Full of Life - ViviAnne's Story

1 Year Update

2011-10-24T20:43:00.002-04:00

Well, she's been cancer free for 1 year and 1 month. She does not have to go back to the clinic for another 4 weeks. They moved her to an every 8 week check up schedule. She is doing fabulous at school and for the most part you'd never know she fought for her life. She talks about it from time to time. She has made it clear that she thinks cancer is yucky, she does NOT want to do chemo again and she's even said she wishes NO ONE would ever have to go through chemo. She's asked the hard question as to why and I answered her as best as I could. Like I've said before, there is no answer to the "why" question that is a good enough answer.

So, she is doing good and we as a family still seem to be okay. There are days I wonder if all the unspoken hurts and disappoints will haunt us forever or if we'll be able to forgive and forget and move on. I guess time will tell.

Anxious. Very Anxious.

2011-09-22T10:14:00.002-04:00

ViviAnne goes to her one year check tomorrow! She has been seen every 4 weeks since her last Vincristine push on September 25, 2010. We're here. She made it to a year. After tomorrow's appointment they will only see her once every 8 weeks. She will be glad to have this larger space between appointments. Last time she asked me how much longer she was gonna have to keep doing this. She became a patient at the clinic May 2008. She is a bit spent with it all. Trying to explain it to a 6 year old who doesn't remember not going to these doctors but still knows she doesn't want to miss school to go visit them is difficult. She'll get it one day.

So I said Anxious in the title of this post because I am! Last week I started to get this feeling of dread in me. One I've felt before. The feeling that something bad is coming. Something, but what?!?! Was it that Brent had a hard day at work? Is it finances stressing me and leaving me feeling hopeless? I push back to the back of my mind that it is NOT the return of Cancer! Its NOT!!! She is fine and as I type that I can honestly say I half way believe it. This past year I've believed it. I had a scare but figured out she can get a fever and it will be fine. But this is different. The knot that was in my stomach all this week and half of last week is now in my throat! This was not a feeling I was expecting to have. I wasn't expecting to have any feelings honestly. I was expecting to truck right along with this appointment as I have the past 6. Routine check up and then on with life. I'm not though. I wish it were finances or something else giving me this dread. Not cancer. ViviAnne is ALIVE and HAPPY and SMART and WONDERFUL and I'm sitting here about ready to throw up! Ugh. It is gonna be a long day and night and then after tomorrow when they tell me she is still cancer free I hope the 8 weeks between appointments don't bother me. I hope I just truck right along. Ugh

Please pray for a family. Jeremy Bartlett lost his fight to ALL yesterday. He was 19. His mother really needs prayers. Her mother passed away yesterday afternoon too. If I am remembering correctly Jeremy was diagnosed a couple months after Viv. When I found out last night about him getting his wings my heart hurt. Really hurt. To fight for so long and be so young. It is never fare. Nothing about Cancer is fare. Everyone who has ever fought or is still fighting has people that love them and don't want to see them endure the pain. Everyone has a story. Love and prayers to Paula and others out there hurting from Cancer.

11 Months and counting

2011-08-27T22:04:00.002-04:00

Well, she is 6 and has 3 less teeth than she started the week with! We also had a clinic visit on Friday. Her WBC's and ANC were higher than usual for her. Not too high like out of the normal range but high for her. Now, this is more than likely attributed to all the gunk her allergies are causing her to fight so we are not at all concerned that her norms are higher than her norms. Does that make sense? Also this means she's is 1 month away from celebrating 1 year cancer free!! The Docs say that after reaching your first year marker your chances for relapse decrease. No I don't know by how much nor do I know what her chances percentage wise WERE to relapse these past 11 months. I don't see the point in knowing these statistics, they get me NO WHERE. I can't stop the cancer from coming back no more than I could stop the cancer from happening in the first place!! "It is what it is." So I find no real comfort in the fact that she is reaching her year maker as being somehow "safe". Nor do I sit around and dwell on the what ifs or wring my hands with worry or make up statistics in my head just to "make it all better". Cause that is not who I am. I'm not a stick my head in the sand kind of a person nor am I a make crap up so that everything will be all better kind of a person. Tell me what I'm dealing with when I'm dealing with it and I'll do it. I'm not gonna borrow trouble nor am I gonna ignore it or sugar coat it.

Don't take any of that as me being somehow ungrateful that she is 11 months cancer free cause I am NOT ungrateful. I thank the Lord every day for my kids and their health and their LIVES!!! I am very grateful!! I am just real about it. The percentage of this or that happening means nothing to me. I am trying to live a healthy life physically and spiritually and mentally and I am trying to raise my kids to be healthy in those ways too. That is the best we can do. The rest is out of our hands. Let me see if I can break down my thoughts on statistics when it comes to cancer. A doctor told a friend of mine something to this extent (it is not verbatim).....if you make it cancer free for 5 years your chances of living longer without cancer increases than if you only make it 3 years cancer free. WHAT?!?! Yeah, you just lived cancer free for 5 years rather than 3, you just lived 2 more years of cancer free!! Now, I realize he could have meant your chances after beating cancer for a second time but still, the way the stats are presented and manipulated just render them useless to me.

I have complete peace that ViviAnne is fine and cancer free tonight and will wake up tomorrow in the same exact cancer free place. The rest is outta my hands. Thank goodness!!!

SO, she is 6 and Cancer Free and this year life is far less stressful than it was last year and the year before that AND the year before that!!

Time Flies

2011-08-22T20:25:00.004-04:00

WOW! This summer went by fast! I can not BELIEVE that ViviAnne is in Kindergarten!!! She is also gonna be 6 this week!!! MAN! She has grown up so fast!

I was thinking the other day while I was making the bed, cause that particular task does not take a lot of brain power, how people kept telling me that if I could just hang on during treatment that I would get my baby back. I pondered that statement, and have many times, usually coming up with the fact that I"m angry because I didn't get her back! I have had to re learn her and I've had to forgive myself for the times I didn't realize it was the drugs and just over all feeling like crap that caused her to behave a certain way. Anyway, this day while making the beds and pondering I realized that in reality getting her back was not truly ever an option for us. She was 2 when she was diagnosed. She was 5 and a half when the drugs were supposed to be gone and she'd "come back". But the fact of the matter is she did in fact grow and change and came out the other side a different person. We all did. So I really shouldn't be angry that I didn't get her back. I should be thankful that she is who she is and that she is this little tender hearted, mothering, smart girl who has an old soul and who is very intuitive. So intuitive! She can read a situation and understand it on a level that other kids her age can't. It sometimes makes the social aspect of her life harder but as a friend of mine pointed out that gift of hers will be a great asset as an adult and teenager which is really what is important!! It's the long haul to look at not the immediate.

She is so amazing! She watches out for her brother and he loves to be with her. He is so sweet! Sweet and funny and I love the fact that they have a bond that is so strong!!

Our little family is growing and finding our way and I have a strong faith in the fact that we will be strong and wonderful for many years to come, regardless of what else gets thrown at us. It is like Brent told our kids, we believe that God is in control of our lives and will always do what is best for us so in reality we don't need to worry, cause God is in control!!

"God's way is perfect" Psalm 18:30

3 Years Later

2011-07-17T20:59:00.003-04:00

Three years ago we were thrown into the cancer world on July 15th. Each year around this date we get a little anxious. It just kind of happens. This year we spent the day just like any other day. I wondered how it would feel this year considering ViviAnne is no longer in treatment. I wondered if I would be upset or anxious again. I didn't feel like I would be. I wondered if by going to Chicago with ViviAnne, Grandma and Aunt Stacey I was some how ignoring this anniversary. Almost like doing it an injustice considering Brent and Cooper would be without us. But, I just rolled with it. So off we went to Chicago while Daddy and Coop stayed home and camped and fished and spent some good "MAN" time together while us "girls" took in the sites in Chicago! And I'm sooo gland I did!!!

Chicago was great! ViviAnne was so good. She walked and walked Michigan Avenue with us and took an hour and a half Architecture Boat tour without complaint. Considering her time to the American Girl Doll Place was not until the second day of our trip she did great behaving!! It was wonderful to enjoy her and see what a big girl she is becoming. I thought about how far she's come in the past 3 years. How much she has changed and endured and came out the other side of it smart, sweet and tender hearted. Now, she is still incredibly head strong and a handful at times but I have to remind myself that this fight that is naturally inside of her has been a blessing for her. The fight and do not back down stance she takes with me is the exact kind of character she needed to beat cancer. To not fear it but take it head on! And this is who she is! And I love her for all of it!!!

So we have another big milestone to celebrate this year during this time of year. Her very FIRST tooth came out!! No taking in heavy doses of chemo and steroids but rather losing a tooth was her reality this year! I pulled it for her and she was amazed at how some thing that could bleed like that did not hurt. She has a proud smile showing off the hole in her teeth!

Three years have past and I can honestly, HONESTLY say that we are a joyful home. I gave good lip service to us being fine but the truth was we were as fine and as happy as we good be. I just need to learn to accept the feelings for what they are/were and not put so much pressure on myself and my family to be a certain way. But I have been trying to let that go and when I think about it we are joyful and happy just the way we are. With all of our noise and mistakes and fears I wouldn't really change much about us, or our past. It has made us, us. I can sit around and wish cancer hadn't happened to my baby but it did. It is what it is. We are moving on. We still carry our scares and I still can't look at pictures of the past but I'm not gonna beat myself up about any of that. It is what it is. And I'm not gonna feel guilty that this past week wasn't some how "memorialized" as it has been in the past. It didn't phase me and I think that is a good thing.

So she is gearing up for Kindergarten and she is full of nervous and excited feelings. My job is to help her deal with those feelings and experiences. It will be new and a challenge but we'll figure it out and learn as we go just like we did with cancer.

Happy Summer!!

Summer Days and Giving Back

2011-06-21T20:00:00.003-04:00

Well, we have kicked summer off in our house in a new way. We are all healthy and hospital free. I have found a new enjoyment of working in the yard and I am even trying my hand at a small veggie garden. ViviAnne and Cooper are getting to the ages that they can be outside with me and be trusted to not dart into the street or wander off and they love looking at the tomato and pepper plants too!! Now that I've explained to ViviAnne to not pick the pretty yellow flowers off of the tomato plants. :) So between the yard work, the thunder storms and the pool we are having a pretty uneventful summer so far. I'd say the kids are border line bored. But I'm loving it!!! Oh yeah! We are doing play dates too!!! This is a new ground breaking thing for us! Play dates that we can keep AND best of all I do not have anxiety attacks about them!!! BONUS!

ViviAnne has been the honored Girl of the Year for the Leukemia Lymphoma Society for a fundraising campaign they do each year. She was on a local television news show and said "Thank you" into the microphone in front of about 200 people at the final event. She is learning to speak to adults at these functions and behave appropriately. Honestly, she does a wonderful job with all the attention at those kind of things. It takes about 30 minutes to get warmed up to the idea of lots of adults talking to her and wanting her picture taken with them but once she gets used to it she is all smiles and high fives and giggles. She really does great! We are trying to teach her that now is our time to give back! To show our love and support to other Cancer Fighters out in the world like people did for us. To teach her that it is not all about her any more. (I'll admit, the later is harder to teach.) But parenting is a marathon, this is something I have to remind myself. She may "get it" one moment and then not the next. Of course, adults are that way too.

OH, she also is getting involved in the American Girl Doll fundraising for Kosair Hospital. It is a group of women and girls who do things all American Girl Doll themed and raise money for the hospital. She went to a day at a horse farm to ride ponies and learn how to groom them and even painted one all while being in the theme of the American Girl Doll, Felecity. She loved it! We will do another event this fall. The money will go to build pods for the NICU at Kosairs. Trying to make the families feel more private while they struggle with their new babies who are struggling.

So, the giving love side of this cancer journey is exciting. I feel a great sense of responsibility to give it all back/pay it all forward! To say thank you to everyone who prays, gave money, sent food and/or cards or just read the blog to check on us. Banding together is what it takes. And many times families don't get that. They either don't live near family or for one reason or another it just doesn't happen. That is another part of LLS and Kosair that many people don't realize. They help the families who are need of help when no one else can. I'm seeing and hearing more and more how the donation dollars make a difference. And I'm finding the deeper understanding of how blessed we really have been. I've known it but now that the clouds are lifting I'm understanding it on a deeper level.

I hope everyone is enjoying their summers!!

Matthew: 25: 34-36, 40
³⁴Then the King will say to those on his right, 'Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. ³⁵For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, ³⁶ I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.' '. . . . ⁴⁰And the King will answer them, 'Truly, I say to you, as you did it to one of the least of these, my brothers, you did it to me.'

Medals 4 Mettle

2011-05-01T19:37:00.002-04:00

This weekend has really been something else. I know for many it would seem like just a normal, whatever weekend. But for me it was great! You see I have for the past, oh I don't know, 4 months or so been just mad!!! I feel like something is missing and I don't know what it is and I live up around an 7-8 on freak out level. Which before cancer was not me at all. I was pretty laid back. But now I'm the one people have to walk on egg shells around. Is she okay today or has she been on the brink of freak out most of the day? Who knows? I don't usually. My friends at Gilda's Club told me they think the reason I have such a feeling of unrest and anger is because cancer is gone. Huh? Then they explained. I lived for 3 years with a sick kid. The minute I let my guard down she would get knocked back down and in the hospital. The shoe always dropped on me. And NOW the shoe is not dropping but yet I'm still on edge waiting for it to. Even though I talk the talk of we are fine, I don't truly believe it to be so. Which to a big extent I agree with them. Thanks ladies for shedding some light on the subject. I can let my life be drama free as I like it and it will be okay. This too will take some time to adjust but I'll get there.

Anyway, I told you all that to tell you this. Saturday was the Mini Marathon in Louisville for the Kentucky Derby festival. Kim, Brent's mom, walked it and some other friends walked and ran it. ViviAnne on the other hand was not able to go watch because she had dance pictures!! So fun! We did make-up and full dress for her upcoming ballet recital. She missed her pictures last year from being too sick and in the hospital. Then she and I hung out with my Mom for a bit and then when we got home the kids and I were outside for 5 hours straight!!! Playing with the neighbor and working in the yard and both the kids played in the hose and were wet down to their undies!! It was great!! They were great!! No big fights only one freak out from Viv but it was very short and I kept my cool with the whole thing! (This is HUGE for us!) It was just a great day!!! And we were exhausted from all our play!!

Sunday I woke up feeling horrible!! Brent even commented that I looked like I was about to throw up and might wanna lay back down and not worry about the dirty kitchen, the dishes aren't going anywhere. Is this my husband? But I really did feel like crap. The kids were kinda grouchy but not terrible and we had a Medals 4 Mettle Awards ceremony too. Now neither Brent nor I really wanted to go. But I had told the ladies at the clinic we would be there. Medals 4 Mettle is when a U of L medical student trains and runs the Mini Marathon in honor of a Pediatric Cancer patient and then gives their Medal to the patient. Last year Viv never got to do this because she was too sick and in the hospital. But even though Brent and I really didn't want to go we went anyway. And I am so glad we did!! We heard Dr. B, the head of the clinic, speak about how important he thinks it is that these young aspiring doctors put faces, names, and reality to the diagnosis they are learning about in textbooks. That they learn first hand the PEOPLE that go with these diseases and their fights and see their courage first hand. To GIVE BACK to their fellow man! How awesome he is to be trying to instill this in his students. We heard from student runners, a Mom of a patient and from a 14 year old boy who is a patient and what Medals 4 Mettle meant to him. It was great! I am so thankful we did it. Because this is what is about for me now. Giving it back, paying it all forward. And I need/want to get to that state of mind on a more consistent basis.

When we got home ViviAnne said she was so excited for her "Graduation at school". You see, this time last year she was already pulled from school. She missed out on all of May and most of April so she never got to make the secret Father and Mother gifts or learn the graduation songs or do the Stick Horse Derby races and there was no end of year picnic for her. She just left school one day and never went back. She was in the hospital, and too sick when she got out too. Are you picking up on the trend here? This time last year Viv was in the fight, I mean really in the fight. Transfusions and relapse and transplants were all swirling around us. She remembers watching the Derby fireworks from the hospital window but nothing of school stuff. All last week I could tell she was so excited to go to school. She would be fully dressed and by my bed at 6:30 AM!! I knew they were doing fun stuff but hadn't thought that she would remember that this was all stuff she missed out on.

So the month of May is crazy for us. We have stuff all through the month. And as annoyed as Brent is with it all, he is so busy with work this extra stuff is stressful, I'm trying to just take it all in. Take it all in and run with it. Not get stressed and pissy. Not get short tempered or have anxiety attacks. But rather remember how thankful I am and should be that she is here this year! Here and not still fighting!!! Here with great counts (had them checked Friday) and excited to be a 5 year old Graduating from Pre-K! And I can cry because she is growing up. Even though the tears are mixed with tears of anxiety for fear that cancer will return too soon, thankfulness that she was spared and is still here with me, happy that she gets to live a 5 year old life outside of a hospital and wonder at how she can still bring people to their knees with her honesty and verbal skills! And that is all okay.
I'm trying to learn to accept for emotions, have them and then move on.

So as we enter Derby week I'm going to try to live in this moment. Show my thankfulness that she is here and not where we were last year and thankful that she didn't lose her fight. Live my thankfulness and smile and run and play and just be. I've tried to be present in the moments of my kids lives and I think these past 4 months I didn't do so hot. I was too wrapped up in my own anxiety and crap inside myself. The negative talk started to over take me again and being there at Medals 4 Mettle today I was reminded to stop it. To embrace my life even though it didn't play out like I thought it would. Even though I feel and know we are a lucky one I need to live that feeling!!! To give back to those around me. Cause the ones around me the most are little and looking up to me to guide them. And I don't want to guide them with all this anxiety. It is like I say to my children, "it's not always all about you." Well, it's not all about me either.

Happy Derby!!

Spring Pictures

2011-04-19T08:46:00.004-04:00

Stacey took some pictures of the kids.
These are pretty representative of how they are. Viv has a softness about her and Coop is a mover and a shaker. Hope everyone is having a great Holy Week!

"I am with you always." Matthew 28:20,

Cast off

2011-04-12T13:27:00.002-04:00

Today is the day the cast comes off! She is excited about it and, to tell you the truth, so am I. Over the past 5 weeks she did figure out how to do things with one hand or at least use the fingers that stick out of her cast but the cast slowed her down. Which is amazing considering she is a pretty slow moving person to begin with! I really took for granted what it was like to have a 5 year old who has no mobility issues. A simple arm break helps to remind me how fortunate we are to have such healthy kids.

On the topic of health, last week was Spring Break. Both the kids had a G.I. Bug. Not at the same exact time but back to back from one another. So the ENTIRE week we had to stay close to home and a bathroom. Thankfully our kids are young enough that they don't look forward to being off of school like older kids do so for them it was just another week at home sick. No big deal.

Allergies have started to give us some grief but not as bad as last year. Hopefully it will stay mild for us because allergies are just annoying!!

With only about a month left of school for us we are already starting to think about next school year. On one hand I hate to do that but on the other I also love to plan. Especially when it comes to school stuff! I just get so excited for them! I also want to make the right choices for them so I think about it quite a bit. It is kind of an uncomfortable feeling to have only school decisions to make and not have them overshadowed by cancer decisions. Uncomfortable because it is a new/unknown feeling but one I'm welcoming and getting used to.

Hope everyone is enjoying their Spring and that whatever troubles/struggles you are facing you will find the strength/humility to turn towards God and turn it over to Him.

Counts and what not

2011-04-06T13:48:00.002-04:00

The clinic visit last Friday went fine. ViviAnne has grown AGAIN. This little girl is growing like a weed! Her counts were still a bit up and her lymphnodes were still enlarged but nothing alarming. Dr. A said I did the right thing by taking her to the E.R last weekend. She said I waited and did not rush her there at the first sign of a fever but after days of fever and swollen lymphnodes she most certainly should have been seen at the E.R. All of her stuff turned out to be "normal" and she is well on her way to being "normal" but for right now she is still in the "watch her real closely stage". So, that was reassuring to me. I am always worried that I am over reacting or something. So it was nice to know I was not. I guess my maternal instincts aren't completely out of wack!

We are on Spring Break this week but in typical fashion for our family we have a sick kid! Coop has had some G.I think since Saturday night and the occasional fever flare up. The fevers are very occasional and I thought the G.I stuff was over but alas he is back at it again.

This makes two months in a row that every single week a kid has been sick with either a fever or stomach issues. They both can't seem to kick it! I am thankful we are not in the hospital!! But seriously I am like any other Mom, I would like my kids to be healthy!!

This too shall pass!

Happy Spring!!

"Cancer is Yucky."

2011-03-31T19:48:00.002-04:00

Hi all! Well here in our house we are never dull. Let me explain. We are a passionate, loud, crazy and sometimes just plain "not right". From the outside looking in we may seem to be pissed off a lot. And to some extent we are. (We are working on it.) From the inside looking in we love hard and loud, we fight hard and loud, we play hard and loud and heck we even sleep hard and loud! (Both kids talk in their sleep.) And we are a work in progress. At night I go to bed and think about all the things I could have done better or just did plain wrong. I ask God to forgive me and help to guide me to raise our children the way He has called them to live. To do what is right by Him and the kids. Basically I ask for help to not screw it all up!

Yesterday, Cooper had his 4 year old check up. I know, I'm 2 months late. Anyway. He is doing great! He is 75-90% in height and 75% in weight. He is a good little guy. They did a CBC and his blood work looked perfect!! YAY!!! They also gave him 5 shots in his legs. 3 in one leg and 2 in the other. So last night he ran a slight fever, threw up once and completely gave up on walking by dinner. This morning he wasn't much into walking but I told him if he could not walk he could not go to school. And today was a big day for him, he was the show and teller! So by lunch he was walking better and went to school. He said he put his picture on "Grumpy" for the "How are you feeling today chart". That is fine. I'd be grumpy too. He is night and day compared to Viv when it comes to everything. Including medical procedures. I am still figuring him out and his needs when it comes to illness and such. I know it sounds silly him being 4 and me still working on that but he was not a sick kid these past years (thankfully!) and I am so used to how Viv is when she is sick. And like I said, they are total opposites in nearly every aspect of life. Except one. Both of the kids are affectionate with us. They both love to snuggle and cuddle and just be close. Which for Brent and I is just fine. We are cuddly too!!

Now on to Viv's "biggie" for the week. Today while Cooper was at school she and I were driving down the road to home and she started to talk about her hair. Seriously, I am so over the hair talks. It is every day, more than once a day. I'm a bit burnt. But I let her talk and boy am I glad I did. I won't go word for word on the conversation because there were tears from her and a couple of "no, no, no, you don't understand" but I assured her I wanted to understand if she could please explain it again. So it went something like this. "When I had Cancer no one really liked me because of my Cancer and because I was gone so much. And now that I don't have Cancer people like me okay. But I don't have long hair like all the other girls. But I have hair when the Cancer girls don't." So I said, "So you feel kinda stuck in the middle and not sure where you belong?" And she said, "No, I feel like it is starting new! Now that I don't have Cancer I feel like I am starting new! And I don't like it!" I"m trying to gather my thoughts and all I can say to her is "Me Too! It feels kinda like I am starting new too now that you don't have Cancer! But by the time you're 6 (cause she is still working on concept of time) I bet it won't feel new to us and more. And all those yucky feelings you have on the inside about it right now won't be there any more. And when you see someone who is different, like in a wheelchair or with braces on their legs, you need to be nice to them and treat them kindly because you don't want them to feel bad and lonely like you felt when you had Cancer." And she said, "I know! I just don't like my cancer!" And so I said, "I know you don't. But, I don't think you should be embarrassed about Cancer because you won! You beat cancer and you should be proud of yourself!" And she said, "So I was in first place?!" Me: "No, no, no, you weren't racing. It was you against cancer and Noah against his Cancer and C.J against his cancer and like that." And she said the most amazing things next, as if she hadn't already. "Oh, so there are people still fighting their cancers but I fought mine and won?!" So I said, "Yes, some are still fighting. Others have won too and some have lost." (Okay, maybe I should have left that last part out to my 5 year old. It just kinda came out) So this is where we landed. Mind you most of this has been through her choking back tears. She says to me, "I don't want to talk about this any more. I don't like Cancer. Cancer is yucky."

So, we stopped talking about it. I did say something to her about an hour after this to tell her that I was proud of her and love her and that if she ever wanted to talk more about her Cancer she could talk to me any time. Or her Daddy. She said, "yeah, cause I beat Cancer. Cause the medicine worked." And I told her, "Yes, and you are a very strong smart little girl with a great brain and a beautiful strong heart. And together with the medicine you won! And I can't wait for you to show people how beautiful you are on the inside as you grow up!" And she gave me a big hug and said, "Guess what. I named my brain Thinker. Get it, cause it makes me think?!?!"

And that was that. My little glimpse into how she is thinking and feeling about where she is now on her Cancer journey was over. And that was fine. We moved at her pace and I tried my best to say the right things and sound sure of what I was saying and reassuring without sounding mad. I know that sounds weird but sometimes she takes my assured voice as a mad/angry voice. Which I don't yell it at her but I don't talk all sing songy oozing with sweetness either. Maybe I should, but I just talk to her like she is a person. I try to use words and examples for her level but the way I deliver it is just like I were talking to anyone else. Hope I didn't screw it up.

Again, her maturity and way with words astounds me. The way in which she can express herself never ceases to amaze me. I think this is another reason why I hate to see her have any struggles with the "friend" department. Well, any struggles at all. I feel like she has been through so much and knows so much and understands feelings on a level that the other 5 year old girls and boys just don't. And how do I keep her with having this empathy and internal beauty and be true to herself without hiding it/ignoring it just to fit in? How do I instill confidence in her without her being a "mean girl"? How do I appreciate her "mouth/brain" and still teach her that she needs to learn when to keep her "mouth/brain" shut? These are just some of the questions I have about raising her.

We go to clinic tomorrow for a check up. Hopefully everything will be fine. I"m sure it will.

Thanks for all your support and prayers.

And Jesus said, "Let the children alone, and do not hinder them from coming to me, for the Kingdom of God belongs to such as these." Matthew 19:14

Another E.R. visit...why not

2011-03-26T20:43:00.002-04:00

So Viv has been running high fevers since Thursday evening. Like upwards of 103. YIKES! And then on Friday she complained of her neck hurting in the back. I figured, oh a krick in her neck. I felt her neck and yes she had swollen lymphnodes but she is supposed to right? Well, Saturday MORE fevers and more complaining of neck pain to the point of unable to move it without Motrin or Advil. So after having a panic attack and multiple calls to my Mom, who is a nurse with vested interest, it was decided I should call the doctor. So I called her regular pediatrician. She wanted her to go to the E.R to check for strep and Minigitious. Given her recent history she just did not want to sit on it till Monday. So off we went!

No strep, no need for a Spinal Tap to check for Minigtious, thank goodness. The doctor did note VERY LARGE swollen lymphnodes in her neck. Only her neck. (Yuck, that is exactly like last time. I have been in knots even since the high fever spike!) The doctor went on and did a CBC. The moment of truth was coming. And thankfully she is fine. Her WBC's and ANC were very high but the Doctor said they are supposed to be. With Lymphnodes that large her body is obviously fighting off something, not strep though, so High Counts are too be expected even wanted. I had to have the doctor explain it to me. I knew how it all worked but this has not been our normal. Too high of counts has always been bad. Now, it is good. It isn't that I think the Doctor at the E.R. is wrong, because I know she is not, but it seems too good to be true. What? We dodge the bullet? The other shoe isn't gonna come falling through the clouds? I can breathe? Are you sure? I mean are really sure? But it's true. She is normal and sick and fine. Still gonna do a round of antibiotics to play it safe but other than that she's good to go!

So I know she is fine. And I had a couple of hours to pray and get myself chilled out before we actually left for the E.R and I was sure in my gut that she had not relapsed. Okay, so that evil 5% was there but I was 95% sure she was not facing relapse. That even though the past two nights have been flash backs to what it was like 3 years ago, this time we are not headed for a 4 month long journey of trying to figure out what is wrong. This time she is normal, sick kid.

Still gonna see the oncologist this week anyway but that was already scheduled. So I'm gonna sleep tonight. At least until she wakes me up with a fever again. Ha ha ha.

2011-03-24T13:10:00.002-04:00

This is a pic from today after Pre-K. We played with her hair and even though she wanted two french braids down the sides of her head I could not quite do it with her silky hair. I told her we would try when it is wet tonight. But...we did get Pig Tails!! Yay! It has been a year since pig tails!!! Again, I might be the one who is the most excited! All though I am not making too big of a deal about it to her. Because after all, hair is merely an accessory!

Also, her cast. You can't see the purple sparks in this picture but trust me they are on there!

80 degrees yesterday and 39 degrees today. Happy Spring!!

So, I guess I'm gonna keep going

2011-03-23T21:39:00.002-04:00

Well, I have had a couple of people request I continue this blog. And after some thought I've decided to do it. As long as I can think it is worth it. I kinda felt like it would be me just talking for the sake of talking BUT I think, like my dear friend pointed out, that people who are in the storm of Cancer might find some little nugget of hope from seeing a family struggling but doing it AFTER Cancer.

Because like I've said, this is a NEW life. There is no going back to the way it was. And honestly, I don't think I'd want to. NEVER thought I'd say that!! Don't get me wrong I am not at all saying I am thankful for Viv's cancer diagnosis, because I AM NOT, but the things I have learned and gained from it I am thankful for. Example A, I have a pretty no nonsense approach to Doctors and Hospitals and Insurance now. Lets lay it all out there and deal with it and talk to me like I have a brain cause I do!! Example B, last week Viv broke her arm. I know, I know you're thinking WHAT?!?! But really I was not at all phased by this. I did not get angry, anxious, worried nothing. It was almost like I felt NOTHING. I mean of course I felt bad for her for being in pain and that she has to be in a cast for 5 weeks but other than that I was good. Okay, I'll tell you what happened. She was at my Mother and Father in laws' house and they have a patch of woods on their property. Well, our "little ballerina" was walking across a log, as to not be out done by her little bother, and she fell. She fell and hit her arm on the ground. But first and foremost she fell in the mud! She was most upset about the mud! When Kim, my mother in law, called me to tell me that Viv had hurt her arm I could hear Viv crying but still the mud was a BIG issue. I arrived to find Viv sitting in Grandma's lap all clean and she said through her tears, "I got MUD in my pretty hair! It was disgusting!" To which I said, "I'm sorry. Did you hurt your arm?" "yeah, I think I broke my arm, Mommy." She too was very matter of fact about it. True she was crying but she was fine. By the time I got her to the ER she was in no tears and never cried again. They hooked her up with Toy Story 3 and she was good. The nurses kept telling me how good and easy she is. To which I said, "She is a Cancer Survivor." So yeah she is good and easy in the hospital, it was a second home! BUT neither she nor I got really flustered or upset. Whatever, she broke her arm. Stick a cast on her and we're good. I can do broken arms. Heck, I can DO cancer. I'll choose broken arm but whatever! So she is sporting a Hot Pink with Purple sparkles cast. Because every girl needs some bling!!!

Brent still got upset that she broke her arm. He kinda went to the same angry spot I've seen him go to in the past 3 years. Now, this is not b/c Brent is an out of control person. It is because Brent HATES to see his children get hurt!! Hates it so much that he/we hover over of them A LOT!!! But he did not stay in this angry mode, which is good. Because it has taken us MONTHS to get out of that mode. But that is another post all together. Probably more than one post!

So we are doing good. Enjoying our crazy Spring weather even with the allergies and finding our way as a family.

If I can figure out how to get the pics of Viv and her cast off of my phone and on to here I will. No promises on that one!

Post Chemo

2011-01-15T17:16:00.002-05:00

Is this the end or the beginning or just a turn of the page?

I have not posted in a long time on purpose. The end of chemo was a mixture of happy and nervous emotions. Letting go of anxieties, anger and fears and embracing our new life has been more difficult than people want it to be. I am sure people on the outside looking in want to shake us and say “get over it”. But living it day in and day out changes you. For the good and for the bad. So I guess that is why I wonder is it the end, beginning or just a turn of the page?

We've mentioned in previous blog posts that we have not ever really questioned why ViviAnne/us? The question will never have an answer that will suffice. The real question is why anyone? Why should anyone suffer cancer? Again, no answer is good enough. So I have chosen that with all that I have had no control over, many times even my own emotions felt out of control, I will move on past this chemo journey changed for the better. I hope to learn from our struggles and come out the other side a better person for it. I would have loved to have learned to not be judgmental, to love deeply, to stand my ground, to pick my battles and want to be a service to others in a different way. A way that did not cause my baby to hurt and suffer; but that was not the cards we were dealt. So I am going to choose to put our lives back together in a way that fosters my newly learned traits. And trust me, we are putting our family back together one tear, one fight and one therapy session at a time.

My prayer is that God lead us through this new part of our journey. There is no going back. Brent and I can't even recall who we were before Cancer. Those people are not even memories, they have been erased entirely. The good part is we have chosen to pick up and learn one another together. To learn how to parent and live and create the family life we want for ourselves. I still mourn the loss of what was. I still have fears that I will fail at this new us because we don't really know what that is. And even though I have said we could learn to live a life that is not day to day in reality that is not the case. We are still day to day in many aspects. Taking it one day at a time. Rebuilding us one day, one break down and one laughter at a time. Any more than that still sends me into a tail spin. We're healing; physically and emotionally and spiritually.

So where will this blog go? I don't know. It may end. It may change with us. I do know that if we decide to end the blog this won't be the last entry.

Thank you for your years of prayers.

Four weeks with no CHEMO...

2010-11-08T12:08:00.002-05:00

So far so good. She had her counts checked and there was no sign of Cancer. Just typing that makes my stomach do a flip flop. It is wonderful and scary all together. I find myself in a place that is familiar to me. A place in which I do not want to reside. It is that place of feeling your insides spin and your shoulders up around your ears and feeling like you might implode. I have no real cause for being there now. She is doing fine. Fear is the driving force behind those feelings and I do not want to live in fear. I've lived in fear for a long time. It is now my time and my families time to not have me there. So I do not dwell there. I allow myself to feel the fear for a moment but then I get back up quickly and get moving on out of there.

She is scheduled to have her port removed on Wednesday! It is the last physical element to saying we are done! This aspect is both a relief and scary. But in all honesty she has outgrown it so regardless it needs to come out.

Physically she is doing great. Emotionally and physically not so much. She is tearful and overwhelmed with sadness each day. She is having to figure out how to play in groups larger than 2 people. She would tell me daily, "It is just too hard, Mommy. I don't know how." Which she doesn't she has been sheltered and her little mind does not process really fast right now and knowing how to play with more than 1 person at a time is a learned thing. I think as adults we take that type of learning process for granted. But when your 5 year old comes home upset daily from Pre-K that it is just "too hard" to play with multiple people it is heart breaking. We are working on it. I have to remind myself that she is behind and can be caught up and Rome was not built in a day. Cancer was not beaten in a day. It was a long 2+years and recovering from it will take time. Her immune system will take a full 6 months to recover as well.

We are dealing with insurance issues as well. Seriously, fighting cancer isn't enough?! Come on, Humana, get it together! We live right outside of Louisville, you are a Louisville based company how are you NOT covering ANY University of Louisville Doctors?! It baffles me! But I'm working on it. We shall see. I am not gonna get on my soap box about insurance. That could be its very own blog for me!!

OH!! We went to FLORIDA Last week!! AWESOME!!! Make-A-Wish and Give Kids the World are INCREDIBLE!!! I am going to write a post all about it! Hopefully this week. I want to post pics too! When we told the kids that it was our last day in Florida and that tomorrow we would be going home Viv replied, "Yeah, cause we have to get back to our real life cause this is just our dream life." And that pretty much summed up the week.

Happy Fall!

DONE!!!

2010-10-08T12:31:00.000-04:00

MAN! October has been packed FULL of stuff already. We have been go go go and it has been a welcomed change of pace. ViviAnne received her LAST DOSE OF CHEMO 9 days ago and her LAST DOSE OF STEROIDS 4 days ago!! HAPPY DAY!! We can start the 6 month detox time and then begin to know our little girl again. Unaltered, no tummy aches, no fuzzy head and no sore body!!!! After 26 months and 3 weeks of chemo we are DONE!!!

She will keep her port until her next round of blood work. And Dr. A said that "WHEN her blood work comes back CANCER FREE" we will remove the port the next week probably. Not IF her blood work comes back cancer free but WHEN!!! How great is that?!? The doctor who has been with her the closest through all this is in the positive mindset that this journey is over for her. Our prayers is that she will NEVER have to walk this journey again. That has been my prayer for so long. One, to not lose her to a complication and two for her not to relapse. With Leukemia it is the complications that seem to be the biggest threat. BUT NO MORE. Not for now! And hopefully not ever!!!

Figuring out our Non-Cancer life sounds like a life I want to learn. Cause learning the Cancer life was NOT something I wanted to learn at all. No one wants to learn to live day to day. Now I have to figure out how NOT to live day by day. But I am willing and wanting to learn this new life. BRING IT ON!!!

Thank you to everyone out there who has supported us, prayed for us, laughed with us, cried with us and listened to us vent!! We have met great people along the way and I am so thankful to my Noogie Land Moms and Chemo Moms. I am so thankful for my Non-Cancer friends who have stuck by me/us too! The Lord has placed you all in our lives at the right moments and I am so thankful!!

Bump in the Road

2010-09-22T14:47:00.001-04:00

Written by Kristen

A Bump in the Road
So last week on Thursday Cooper had a 12 hour stomach bug. I was hoping it would miss everyone. Monday early ViviAnne threw up. But only once. Then when she woke up from a nap she had a fever of 101.5. So I let her just hang out for a bit and took her temp periodically to see if it would come down on its own. She has done that in the past. Spike a fever and then it breaks all by itself. But after a couple of hours this did not happen. I called the Doctor and was told to take her to the hospital. We got here around 6:30PM. Her fever was gone by the time we arrived. Of course! But it spiked back up around 9ish and then again around 4AM. So we have been here for going on 48 hours.

She has really been okay today. Her HGB is right around 10 which is anemic but not low enough to transfuse. Her platelets are 230 but her ANC was over 9,000 when we were admitted. It has steadly come down through the course of the stay but considering it is still high they want to play it safe and keep her here while they wait to see if her 48 hour blood cultures come back negative. She has been fever free for over 24 hours as of now and so we wait.

She keeps teetering back and forth between being in good spirits and being down right hateful! Her biggest beef with today is she has missed her PJ Party at school today. She woke up and said, "Okay, Mom, tell them I am ready to leave cause if we go now I can still make it to my party". I told her it does not work that way here and she got all teary and started fussing at me that she was ready to get outta here. I can't blame her. She knows that she is missing out on fun things while she is in here. And she is bummed.

I am going to take her to Art Therapy here in a bit. We'll see how that goes. She keeps calling it Art Class. We'll go with that. Sounds better. Maybe they can get her to express why she is always so angry and argumentative with me. Then again, maybe I don't want to know. Kidding, I want to know.

Oh yeah! They are delaying her last Vincristine push and steroid round till next week. Which is fine. No steroids this weekend is fine by me. I am used to plans getting changed and schedules getting thrown off. It is life. You can either fight it or roll with it. I have chosen to roll with it. Getting all worked up does not help things.

I have also found a very firm sense in "This doesn't work for us but this does" and then going with that. It is my life and my kids and husbands life. We have to live them the way that we are called to live them. Not a way that makes other people comfortable but a way that God has asked us to live. And if that means saying No to things even when it would be easier to say Yes that is what I am doing. Finding my voice, I guess you would say. Now, I do need to work hard on the volume of my voice from time to time but our lives are all a process and God isn't done with me yet.

So our bump in the road has been just that. Just a little time in Hotel Kosairs. They are good to us. Oh and if you were wondering, even if this happened next week or next month the same thing would have occurred. Fevers within the first 6 months after treatment land you right back in the hospital. Come March I'll have to figure out how to care for a sick child and NOT bring them to the hospital.

Thanks for the prayers and support.

August Update

2010-09-13T14:52:00.009-04:00

Well August was a full month! Viv recovered from her end of Julychemo round during the first part of August. Then as the month went on we geared up for her return to Pre-K and her 5th Birthday. She had a wonderful pool party with lots of friends and family and the cake she designed herself!! It was a lot of fun making her cake for her andgetting to celebrate her turning 5. One of the best parts of her party was when she opened a pair of jeans given to her by Grandma Susie and she said in her best drama queen voice and hand motions, "Oh I hope those aren't skinny jeans!" It made the party I think! Justgoes to show she is always paying attention.

Speaking of things "stylish" that is Viv's newest thing. She wants to be stylish and asks after getting dressed if she looks
"stylish". She changes clothes about 4 times a day and won't wear a dress to school because it does not look good with her tennis shoes that she has to wear for school. Maybe when the weather gets cooler she will with her leggings. We'll see if she finds that stylish?!

The end of August she had her FINAL spinal tap! She did just fine. It took a long time to get the both Doctors and Chemo and Nurse all there at the same time so it was about noon when they started and she was so hungry and thirsty that she just became very grumpy. I can't really say that I blame her. It was so weird to think that I was watching her get her last spinal tap. I even have a hard time saying it was her FINAL spinal tap because it just seem possible. Plus it seems like if I say it and really believe it than it won't be true.That is will somehow jinx it. I know others think I should have been bouncing up and down with the fact that she has had her last spinal tap but it just is too scary to think about. That other shoe might just drop if I do.

School has been going

along nicely and Coop is going to the same preschool as her this year. It is nice to have them both at the same place. He is doing great and getting all stickers when he is there. Right now it is about getting him used to being in a school and to like school, which he does. He has shot up in height! He is 41" and only about 1" shorter than Viv. They really do look like twins now. Her hair is just about the same length as his now and so I get that my sons are cute and then they'll stop and so, "Oh, I mean son and daughter" cause 9 times out of 10 she is in a skirt or dress or pink.

One more Vincristine push to go the end of September. One more round of awful steroids and then she is done. Just done. Some people have asked me what I'm gong to do with no more chemo and I just draw a complete blank. I guess we'll all find out the answer to that question together.

Friday July 30th

2010-08-03T09:14:00.002-04:00

We had treatment today. Her counts were excellent at 1400!!! YEE HAW! We had a very plain jane, uneventful clinic!!! Those are the very best kind!!! She is doing okay. We still struggle with her attitude of everything has to be a fight and the "end of the world as we know it" when something does not go according to how she thinks that it should drama stuff but we're working on it. 2 more Vinchristine pushes and 1 more LP is all that is currently on the chemo schedule. Praying and hoping the other shoe does not fall and she really does get out of chemo.

All in all she is doing fine. She is excited about her 5th birthday and wants to talk about it A LOT! She is ready to start Pre-K again and is also looking forward to Dance. She asked today if she would still have her port and cancer when she turns 5. And told her yes. She said, "So, nothing changes I'm just bigger right?" She is so smart. I think that is part of the reason why she does fight me so much. She runs through ABC in her head of a scenario just like I do and if our two scenarios don't match up she gets upset. Especially when she just has to be correct, right? HA HA HA. Getting to know your children is such a wonderful experience and challenge.

I for one am looking forward to meeting ViviAnne in April. When I can know that it is not the chemo making her act a certain way. Poor baby does not even know what it is like to have a day with no meds, no pains and no crummies in the tummies. She has no recollection of what it feels like to not feel like crap or altered. She will have to get to know herself too. We will all meet again in the Spring of 2011. Sad, scared, feeling cheated but yet excited, blessed and encouraged are all the feelings I have about this new family we have for ourselves on the horizon.

Just a little update.

2010-07-17T22:38:00.001-04:00

Well, on Friday I took Viv to the clinic for two reasons. One, she had this really bad rash that I thought was from the sun exposure and all the meds but it looked awful and she was really itchy. Two, she needed a counts check after a increase in her Methotrexate. Even though Methotrexate does not decrease counts like the 6MP pill does they just wanted to check since they were taking her dose from a 50% level to a 75% level. Well, her ANC dropped, A LOT. She had been in the 3,000 for two months, hence the chemo increase, and her ANC is now 700. UGH!!

Dr. Ayyanar came in with her "concerned" face and said, "well maybe she has a virus cause her ANC is low but not too low to hold chemo. So, watch her for a fever cause it is possible and be very careful with her exposure to others."

So, our two days of normalcy this week were ended with this. Abigail, the kids 8 year old cousin, had spent two nights with us this week and we swam with cousins and friends for 2 days. So much for trying to be normal. We'll recheck counts in a week and see how she is.

2 years later...

2010-07-11T22:33:00.000-04:00

July 10, 2008 at 11am-ish, I was phoned that my baby has cancer. Two years ago today we were living with cancer, not knowing what type, the prognosis or what we were going to do. Here we are two years later. She has been through many levels of hell and is not out of there yet.

We have had a great weekend and I was even able to relinquish her to be with Grandma all day yesterday. It took a lot of work on my part mentally and emotionally to not make her stay home from the wedding in the afternoon that she had already been told by Grandma that she was going to attend. I am so glad I did though. She had a great time and danced her hiney off with none other but her admitting nurses' daughter!! Joy she deserves and I am so glad I did not keep it from her because of my anxiety.

I find myself, after two years, to be riddled with fear and anxiety of stepping out of this house, this bubble we are in, and allowing she and Coop to do things without me by their side. On the rare times I do it I am watching the clock for them to come home. I contemplate whether to take her places over and over in my head. Simple places like Target, friends homes even family functions. And more often than not land on the decision to not go and do something; it is safer here. We longer go to the YMCA because my anxiety goes into over drive when I think of the germs in there. I can't even really remember just picking up and going without thinking about it for hours sometimes even days. My prayer is that ViviAnne and Cooper not be forever altered by these fears and anxieties.

ViviAnne is doing great. In two years she has only been in the hospital for longer than 24 hours every 6 months. And with exception to last April when her bone marrow stopped working she has really been a lucky one. She is beautiful and sweet and caring. Her caring even becomes a hinderance for her at times. She loves to dance and swim and sing. She LOVES to wear dresses, paint her nails and play all things girly and she loves books and drawing too. She is amazing with the complex issues and how she has a natural instinct on how to cope with them in the moment and then release and break down after it. Such a grown up thing to do.

Two years later we know what type, we know what the prognosis is but we still don't know what we are going to do. How to do this new life that is coming before us. I don't think we've done the past two years great. Not great but fair. But there is no hand book or "how to" book on life, no matter if there is cancer in that life or not. We do the best we can with what we have. And when you have been handed hell, you deal with it the best you can for you and yours.

Two years down. Three more Vinchristine pushes and one more Spinal Tap to go. The every day battle is ending. The light is there. And much like we were shoved into the darkness we are now being pushed into the light. Yes, it is for our own good but the darkness becomes your comfort zone making the light you have so longed for, prayed for and wished for just as scary as the dark.

Don't misunderstand. I want her to have her body back from these poisons she has been forced to take to save her life. I want to get to know my little girl as whom I thought she would be before she was diagnosed. I want her to know what it is like to have a day with no tummy aches, legs that can run the full length of the play ground without hurting, and a brain that is just as sharp and quick as others around her. But the fear is there. Gripping on so tight, pulling at you and your joy. I always wanted to have a joyful home. Maybe in the next year we can figure that out. Maybe the light will rush over all of us and the fear will be but just a memory buried in the back of my soul.

Summer Update

2010-07-07T15:10:00.011-04:00

Long Overdue.....I know.

So I know I've been neglecting the blogs. And well, here is the thing...I just really don't feel like I have anything worthy of reading. Ever since she was released from the hospital in April, we have a pretty ho-hum life. I don't take them, Viv and Coop, really anywhere. We do Gilda's Club once a week, and now that the weather is hot, we swim at Grandma's about 3 times a week and that is about it. I will say this, Viv is a GREAT swimmer. She swims with no floaties/swim wings. She jumps off the diving board, goes face first down the blow-up slide and even spins mid air when she jumps off the board or the side into the pool. (Of course my heart about stops every time she does these "whirlly birds!!)

She is afraid of EVERYTHING on land and gets nervous when her tricycle goes too fast; but in the water she is a FISH!! That has really been the best part of summer, watching her just go to town in the pool! She is not good at running b/c of the muscle soreness with the chemo and I think she has just really taken to swimming.

It is great! Coop, well he swims but he is more of a guy who wants things on wheels! He loves bikes, big wheels and trucks and tractors. He has already requested that Nana get him something he can drive around at her new house. He is such a funny kid!! He also requested tools and a swing! All things man/boy related things, he LOVES!!

She had treatment last Friday and they increased chemo. They just can not keep her counts in the range they want them. Then when her counts do finally get into the right range she gets sick and they plummet! This balancing act and trying to figure out what it all means, if anything, is maddening!!

I have not only neglected the blog but family and friends too. I don't really do anything or call anyone. I just can't seem too. I'm struggling and maybe even more than I realize. I am spending what little energy I have on my kids, and then on some days there is some left over for Brent. He says he is fine with what I have to give him, that he is not feeling too neglected yet, so that is good. But I am just struggling. I know many people think I should be use to it or excited because treatment is coming near the end, but all I can say is this, sorry but I am not feeling any of that. I have to figure this out on my own time table and in the best way I know how for me and my family. That is the best I can do. And if that means I stay in this pit for a longer time than others think I should, then so be it. I am praying and doing all that I feel like I can do right now. Telling me how you feel is fine and great! I'm totally willing to listen and be happy for you. But expecting me, the MOMMY, who has been the very closest to this hell with her every step of the way and watched helplessly as my BABY is in hell, to just be okay, or happy, or over it/used to it is just not gonna happen. Brent and I have to figure this out. And me being where I am is making it harder, I know. So I've got that to figure out too.

So, that is that. I'm still day by day, sometimes hour by hour. I would someday like to not be in survival mode but that is all I have known for over 3 years now and I have that to figure out too. We'll see if my relationships with my kids and husband can ever get to a place I would really like for them to be and then be sustained in that place.

Home at Last!!!

2010-04-27T20:37:00.001-04:00

So ViviAnne was released yesterday at 2PM. Her counts FINALLY came up and the potty issues have dramatically decreased. The last 24 hours were very tense. Her ANC was still nothing and her WBC was right at normal so Dr. Ayyanar did a lab test that would check her white blood cells for any Leukemia cells. If there were cancer cells she would then do a Bone Marrow biopsy to check for full relapse. Needless to say we were all VERY scared. But thankfully the lab results came back negative for cancer cells which meant NO RELAPSE!!! And ViviAnne was sooo tired of doing the nightly shots and the doctor determined that she could be completely done with the shots. Another good thing. So we are home! She is settling in okay, it is always an adjustment to be back home and having to share attention with a sibling.

ViviAnne said more than once that she wished I had not taken her to the hospital. She would scream and yell about the shots and say things like, "Mommy, tell them to take my port out I want to go home!" or "Why did you bring me here?!" It was heart wrenching. I explained when we were home that I did not want to take her to the hospital but that she was very sick on the inside and the hospital was the only place that could make her well. She just gets quiet when I tell her things like that. She had a lot of anger this time. And rightfully so.

Her hair is falling out still. She told me last night that she was sad her hair was falling out. I asked her tonight how she felt and she said mad and sad. When I asked why she said "because I won't be pretty any more with a bald head." I assured her that she is beautiful with or without hair. She has a TON of hair to begin with so even with it falling out by the handful she still looks like she just has thin hair. We'll see if it slows down this week. I hate it for her. She is so sad and upset about it.

Thanks for all the prayers and well wishes the past week.

We will go back to the clinic on Thursday to make sure her counts are holding and she is not in need of another transfusion. For now we are happy to sleep in our own beds, to not be stuck with needles and to be with Daddy and Cooper.

What ViviAnne has been up to...

2010-04-25T23:12:00.016-04:00

ViviAnne is still at Kosairs in isolation. One of us will update soon with all the latest info in regard to what's going on medically. Just wanted to post a couple things really quick about what she's been up to. Being stuck in a room for over a week, Kristen and Brent have been trying to keep her entertained with art projects, pretend store and beauty salon, and lots of movies, among other things.

ViviAnne wanted to say a big thank you to her teachers and classmates at St. Aloysious for the bag of goodies they sent...

Also, here is a song she and Kristen wrote together...

The Sun has Gone to Bed

by ViviAnne Bohannon

The Sun is awake in the

morning
The Moon is asleep in the morning
At night the Sun has gone to bed
And at night I

must go to bed.
When it is time for night night I tell my Mom & Dad "I love You" cause I really really do.

I know we are friends when the Moon is out & the Sun has gone to bed.
And I know we'll be friends when the sun is out & the Moon has gone to bed too.
And I will be your friend in the morning.
I will be your friend always.

ViviAnne and Brent are working on a cartoon together. So far its about a guy who looks a like a triangle and incorrectly thinks he has super powers, and his sidekick, an evil Chihuahua with an identity crisis (and incontinence) who thinks he is french.

ViviAnne said "tomorrow we will work on their nemesis". Who Brent believes will be a Super Human Princess that fights crime in fabulous masquerade costumes.

Thanks again for everyone's thoughts and prayers.

Good Day...

2010-04-24T00:19:00.001-04:00

Well, today was a good day. She is still not eating but her fevers seem to be gone and her potty issues are decreasing. She was in good spirits all day and laughed and smiled a lot. They had to de-access her port and then re do it. Simply a 7 day procedure thing. So while she was unhooked I washed her hair and let her dance around the room. And when the nurse accessed her port she did pretty good. ViviAnne told me, "they can't do it here. I'm really scared". A lot of times it takes multiple sticks and nurses in the hospital to access her port. Come to find out they don't hold onto it tight enough. But today I warned the nurse about her wiggly port and said to just hang on to it and all will be fine. And I was right. ViviAnne was glad that she got it in one stick, me too.

Her ANC is only 50 and her HGB is dropping but not too bad or too fast so we will see if it can just hold on and level off. Her platelets are still low, but they are the last cells to fully recover so we will have to watch them. BUT the good news is her bone marrow has a .1 increase in function!! YAY!! We'll take it. Or maybe it was .2 and her White Blood cell count was a .1 increase?. Either way it appears as though the bone marrow is starting to work again. She has the workings of Pre Cells in there and that is good. Her numbers are far from normal but bone marrow is not repaired in a day. Dr.Ayyanar was hopeful and optimistic that if her fevers stay gone and she starts to eat AND her counts come up and stay up then she can be released as early as Sunday!! So, we will see what Saturday and Sunday labs bring.

Now, with all this goodness there are 2 disturbing things to report. One, her hair is falling out in CLUMPS!! It is just like it was when she went completely bald. We'll see if it slows down tomorrow but it was BAD today. Her hair is shorter and much thinner than it was yesterday. Two, if she goes home on Sunday chances are I will have to give her her shots at home. YIKES! I am not afraid of needles but I'm Mommy. I'm supposed to be holding her hand during the shot, not giving it. SO, we'll see what happens there. Maybe her hair will not go completely out this time and maybe I won't have to give shots. We can always hope.

Thanks for all the prayers. I am always blown away but the out pouring of prayers for our family and little girl.

Wednesday Hospital Update

2010-04-21T10:40:00.001-04:00

2:30 A.M
Here is what Dr. Ayyanar is thinking. She has a virus that has shut down her bone marrow and that is why her HGB and PLT are not maintaining transfusions and why her ANC dropped down to nearly nothing. So she received more blood and started doing a shot in her leg once a night to stimulate her bone marrow so it will produce and do it quicker than it is. At least this is the best I can explain it. I asked her if they were thinking relapse at all. She said no, not right now. ViviAnne is not presenting with other factors that they typically see in relapse. So good! IF these shots and transfusions don't hold her levels up then they will be looking into checking for a relapse. Kind of a non-committal answer but a plan with answers none the less.

SO, here is what I as the Mommy and the ever present person knows and fears. I know VivIAnne's diagnosis nearly 2 years ago was not typical. She did not have many factors that jumped out as Cancer and she had some things that suggested it was not Cancer. So telling me that she is not showing the typical signs of relapse is not comforting to me. Also, I know that Dr. Ayyanar is being truthful when she says that certain viruses in our Cancer kids can suppress the bone marrow to the point of nearly shutting off. And so going this route first is the best and most logical. And I am really hopeful and positive that this in fact the case. I do not have a heightened sense that relapse is here. Is it a fear, yes of course. It is a fear that every Cancer Mom and Cancer patient has. It is ever present. But do I really have my gut telling me that is the case, no. I am positive and hopeful her bone marrow will start to produce the necessary blood to survive and that she will not relapse.

It is now 3 A.M. She has a fever. CRAP! She had been fever free for over 24 hours. She is turning circles in her bed and talking with a whimper. She just spoke of shots. Love her heart I just wish I could trade places with her. I would. I would do all of this for her.

You may wonder how I do it. Often people outside of the Cancer world wonder that about those of us in it. Well, I can tell you this about me. When I am in the hospital with her my "energy level" or what some people call their "oara" drops down to nothing. I don't get panicked or anxious or mad easily. I do not get overly excited either. And if I do it is short lived and never in her presence. So even though my mind turns and burns I do not physically or verbally manifest these thoughts nor do I turn them into real feelings. Maybe this is also why the nights are hard for me. I have to work harder to not let my body and soul react to the fears and thoughts. They have to remain only in my mind and at arms length and in the dark nights it is harder.

I suppose if I really think about it I don't have the option or the knowledge to do it any other way. The fears are real but I don't want her to see or feel my fears, she is the one physically bearing the brunt of all this. Anxiety is no good cause I have no where to go and fighting against that fact is futile. Mad gets me no where either. So I sit. It is like my whole body goes into slow mode. I have to be Mommy and I have to be patient Mommy so no other emotion can be too strong. I do not think about doing this mental/spiritual/physical slow down. It just happens. I've learned that when a Doctor or Nurse tells you the results won't take long you are really looking at a 6 hour wait. Now, outside of the hospital 6 hours does equate to "not long" for me. But in here, it does.

This is another reason I do not talk on the phone too much. Talking about it to multiple people and answering questions or hearing their concerns makes it more difficult to keep my emotions under control. So, I go radio silent to many of you. The blog has helped. I don't feel like this is talking. I go at my own pace and when I want to. It is selfish and I am sure some people close to me feel slighted and that is not my intent. But I have to stay calm and patient for ViviAnne and this is the only way I know how.

I did feel peace today while watching her sleep at 7PM. She was getting her blood so the color was coming back to her cheeks and she was sleeping so peacefully. I just sat on her bed and watched her. I had no fears and no what ifs running through my mind. Just peace. I find myself watching her more this time. Really looking at her. She is so beautiful and smart. She told Dr. Ayyanar, who was speaking about how ViviAnne was when she was first diagnosed and how angry she was with the doctors and nurses every time they came in her room, that the story was so embarrassing. Exact words, "this is so embarrassing". Now, how many 4 year olds would say that to their doctor? She was so right on and did not lose her cool just said it. She cracks me up. After getting her shot tonight she told her nurse, "tomorrow night give my shot to another patient". I thought her nurse was gonna lose it! She also has the eye rolling of a 14 year old girl down pat!!

I really should try to sleep. I think the Tylenol might be kicking in. She is sleeping peacefully now. Good night all. Thanks for the prayers and warm thoughts. I am grateful for each of them and even though I have gone "radio silent" I want you to know I appreciate you and your prayers. God bless.

Hospital update

2010-04-20T11:00:00.001-04:00

Hospital update
This morning her Hemoglobin (HGB) has dropped AGAIN, 7.2 now, so they are going to transfuse her today. Her Platelets (PLT) have dropped too, 58 now, but they are border line transfusion. Yesterday they had stopped one of her oral lung meds. that can lower counts to see if that would stop her counts from dropping. It did not. And the medicine they gave her in place of the oral meds had to be inhaled and after the breathing treatment she passed out. It was scary for me and I am glad my Mom was here and I was not alone. ViviAnne came back around quickly and 3 nurses ran into the room to help her. Thankfully that treatment is only a once a month thing so she won't be doing it again this stay, if ever.

Flagyl is the med she is on for C. Differential and it tastes gross. And this morning she lost all the color in her face and started to shake real bad and then threw up, threw up all the meds too. So they may change to a different med because this is the second vomit. She HATES to vomit. Really, who likes that yuckiness?

I have not seen Dr. Ayyanar yet today so I will ask her what her take is on all of this. Is it all from the C. Differential? We know ViviAnne tested negative on her Coombs test and on her Hepatitis test so I just am curious on the Docs. take. I like Dr. Raj, he was the Doctor on all weekend and yesterday, and I do think he is a great Doctor I just have a bit better of a relationship with Dr. Ayyanar. We'll see.

Thanks for all the prayers.

Fears still lie in the quiet dark

2010-04-19T10:03:00.001-04:00

ViviAnne is back in the hospital. Friday morning around 4 she woke up with a stomach ache and a fever. I took her to the clinic first thing that morning to find her ANC at 100, her HGB at 7.8 and her Platelets at 78 all wrapped up with a temp of 102. So we were sent directly to the hospital. It is now 5 A.M on Monday morning, we are still here.

Over the weekend she has had a blood transfusion and a platelet transfusion. She has battled high fevers, low temps. and shaking. She has tested positive for C. Differential, an infection in the intestines/colon. It is painful and causes big potty issues. She is experiencing it all. On Saturday she sat next to me and moned for about an hour or so. Friday I spent most of the time in bed with her cause she felt so crapppy. Sunday she perked up but did have some icky times. Sunday her ANC was 10!

So, here I am again. Lying on an uncomfortable love seat thing with sheets that turn into a wrinkled balled up mess and I am facing my fears. I lie here with the all too familiar sounds of the hum of the air being filtered, the I.V pump squeezing fluids and the clock. The blasted clock in this room is loud! I can hear the seconds ticking away. My mind races as I go over all the blood work and tests they've done through the course of the weekend. Negative for Hepatitis, negative for Coomes, Pancreas working properly, Liver NOT going into liver failure yet. Liver enzymes high, Billy Rubin high, ANC low, HGB up but still anemic, Platelets up but still low......what does this all mean? I pull myself back from thinking the worst and just remind myself that she is sick and that is what this all means. SHE HAS LEUKEMIA DUMMY!

But still, here in the dark running on an average of 4 hours asleep a night, it is hard not to get lost in your fears. During the day I am distracted with tending to ViviAnne. Here in the quiet, but noisy, dark my mind turns and burns with questions and what ifs. And I think of Cooper. I miss my little man and feel like I am failing him. He is struggling with bad allergies and I just want to hold him. Love on him and listen to him talk. He is so funny.

The night in the hospital is lonely. You are reminded how isolated you are and how the world still goes on even though your world has been forced inside these four walls. It is a must in order for her to survive and I would not be anywhere else. But doing this again and again, and I think we are one of the lucky ones, can really do a number on your head. Facing demons and fears in the dark of a hospital room that no Mother and Child should have to face; and yet here we are.

Update

2010-04-02T17:11:00.001-04:00

Just wanted to give a quick update. I'm sure Kristen will have a lot more info to share in the next couple of days, but until then...

ViviAnne was released earlier this evening from 7 West. From what I understand, all of her blood work (post-transfusion) and chest x-ray looked satisfactory to the doctors. I'll leave all the details to Kristen, but just wanted to let everyone know that she is home and doing well.

Thanks for everyone's thoughts and prayers.

Aunt Stacey

Back to 7 West

2010-04-02T11:37:00.004-04:00

Kristen asked me to put up a quick post to let everyone know whats going on. I'm just getting bits and pieces from Brent, Kristen, and my Mom, but I think whats going on is...

ViviAnne was admitted to 7 West (Kosairs). She was looking really pale, had been coughing a lot, vomiting, and running high fevers. She had been fighting all this for a month now with antibiotics at home.

Her fever has broken but her lower left lung sounds diminished. They are concerned she is heading down the same road she was on last fall with the exception that they caught it much sooner this time.

I think her ANC was at 940 (which means she's neutrapenic) and her hemoglobin at 7.4, so she was given a blood transfusion. I think its going to be a kind of "wait and see" situation, so I'll update when I know more.

Aunt Stacey

HAPPY DAY!!

2010-03-26T11:19:00.006-04:00

After two weeks of me being just a ball of anxious irritability today my feelings were relieved! We went to clinic to check if we could get ViviAnne to start responding to treatment again by a drastic increase in chemo and....SHE DID!!! The very minute Dr. Ayyanar said her ANC is 1700 I smiled so big and just wanted to jump up and down. I was so relieved and excited! She is responding to treatment!! Relapse averted!! YAY!! They are going to maintain this very HIGH dose of chemo as long as she tolerates it and IF she stops responding to it then we will just cross that bridge when/if we get there. I am not even thinking about that. I don't want to think about it. Today she is responding to treatment and her cancer is still being held at bay!!! YAY!!

Today is Brent's birthday and what a wonderful gift for him to have, a daughter who is staying in remission!?!?! So excited!

They are thinking she has asthma because the allergy medicine they put her on 2 weeks ago is not working at all! She has coughed and coughed for nearly 7 months and the only time she was ever under control was when she was on breathing treatments. I was against the asthma diagnosis months ago but now I am thinking that might really be it. She coughs all the time and if she gets upset she coughs so much she has a hard time catching her breathe. We go to the asthma doctor next week. They want to hold off as much as possible on any further X-Rays or C.T's because they do not want to further radiate her unless absolutely necessary. Which we appreciate.

So, today is a GREAT day. The sun is out and it is cold BUT I am on a high today. Which is good because I've been in a pit for 2 weeks!

I would like to thank everyone for their prayers over the past year and a half. And especially the past 2 weeks.

2010-03-14T23:22:00.008-04:00

March 12, 2010
CRAP!

Well, ViviAnne had treatment today and it was not good. She fought every move we made just like she did in the very begging. I told her we could do it the hard way or the easy way and I really wanted her to chose the easy way. Well, I don't think she was falling for it so it was a 3 hour battle from finger poke for counts to when they came into her room at OMO to sedate her for her LP.
And to add insult to injury, her ANC had doubled from last month when they increased her chemo. So, basically her body did the direct opposite of what they wanted it to do. Her ANC was 6200 and her Hemoglobin had decreased a bit. I did not like the look of the blood work at all. The Nurse said they weren't thinking relapse but Dr. Ayyanar jumped on it and maxed out her chemo on all 3 different types. Which I appreciated. I mean, come on lets be proactive and avoid relapse at all costs! We will go back in 2 weeks to check counts again. They need to know sooner if she is responding to the increase like they want or if it will puts her counts too low. I personally do not think it will put her counts too low but I am praying that her body will respond to the increase in chemo and we will bring down the ANC. I hope I am explaining this all correctly and letting you

know that even if her counts do not respond correctly it does not mean for sure that she will relapse; but the thought is if the ANC stays too high for too long then your chance for relapse is higher, because you are not responding to treatment. ViviAnne, bless her heart, has not been responding according to the books for a year now. A lot of her cancer has not been by the book, not even the symptoms for diagnosis. But hey, that is how we do things in our home. We do things our way and not the way that is most popular and we still seem to pull it all off.

On a happy note, the new meds. they used to sedate her for her LP worked wonderfully. She simply went to sleep and woke up as if she was napping. I asked her if she thought her sleepy medicine went okay at the hospital and she said yes. We didn't talk about it too much. I am thinking that part of the reason for her being so hard to handle during the day was because of the fear of having a bad experience at OMO like last time. So hopefully the next time she has to go to OMO she won't be so afraid.

Her hair is beautiful and people comment on it a lot. I think in one way she does not like adults at school to dote on her hair because it is a reminder that she is different. She has been quite the handful the past 3 -4 weeks with attitude and anger and everything seems to be an arguement. We are trying to work with it the best we can and often I question if we are doing it correctly. Constantly wondering if it is the cancer and chemo or just her. But, maybe with her blood work getting all out of wack this past month added to the frustration inside of her. God only knows and it is going to be through his strength that we will get through this next year. Praying for her to respond to treatment and not relapse.

Best wishes to everyone as we welcome SPRING!!

Updates are back!!!!

2010-02-16T13:15:00.011-05:00

February 14, 2010

Happy Valentine’s Day!!

Okay so we have not abandoned the blog. I have other posts that I have written and not posted but I just thought I’d add on to this one and try to consolidate a bit.

Christmas was good for 2009. A bit stressed but I don’t think we were any more stressed than the average family. We were home for New Years and the month of January went pretty smoothly. We have been running really high ANC counts for months now so the Docs increased chemo this past Friday when she was in for treatment.

But let’s back up just a bit. January 30^th we celebrated Coop’s 3^rd Birthday. Brent and I made him a John Deer cake and all of his Grandparents were able to make it in to see the big boy blow out the candles. What a sweet funny boy he is becoming. He will look at you out of the blue and tell you he loves you or that he likes you. And then that is it; he will go right back to whatever it was he was doing. So sweet.

ViviAnne is really enjoying Pre-K. She is staying 2 days a week for a full day and I have already told her that she will not be enrolled in Kindergarten next year and she doesn’t care, she wants to stay with “the little kids”. She doesn’t understand fully what that means yet but she’ll figure it out.

OH, ViviAnne finally grew!! She is 40 inches now! So exciting to see her grow and change. Her hair is thinning out again and the Docs said that it can happen that you just never know how a body is going to respond to treatment. I am thinking it is just going to thin and not fall out completely, that is my guess.

We have exactly 12 more treatments and 4 more Spinal Taps and we will be done. I have a knot in my stomach even typing that. I know I should be doing this joyous countdown but I am not. I am afraid to get excited about it and then the shoe fall and the dreaded happen. I know many of you are thinking I am crazy and not finding the joy in it but it is the Chemo Mom curse. You want to be joyous and you are but the fear is so real and so present that it robs you of it. And considering that the hypothesis is that a child who runs consistently high ANC’s is more likely to relapse…well that is her. For 11 months now we have been battling keeping her ANC in the range that is optimum. The only time she gets into that range is when she is sick and then it jumps right back up again. So yeah knowing these facts that I HAVE to know steal my joy of a countdown. Because the light at the end of this repulsive tunnel is growing bigger and brighter then it was last year and I know this time next year, God willing, the Light will be right on top of us! So I’m praying for no relapse and for somehow to find the joy, for my family’s sake. They need me to find the joy in life again, they need me to “get back out there” and I pray that I can and will and I pray it will be sooner rather than later. It can only help us at this point, can’t hurt.

While at clinic Friday ViviAnne was playing with another little girl about her age while in the waiting room. They were equal in their noise level, which for those of you who don’t know is LOUD, and they sat on the floor and giggled and played the Memory game. Then came the triage nurse calling the other little girls name. These two very small little girls stopped giggling and squealing and got completely silent and just starred at one another. The little girl put the cards down, got up and walked through the door leading to the exam rooms and treatment room. ViviAnne said nothing just told the little girl’s mother that she did not need help cleaning up the cards. She silently picked up the cards, turned and handed them to me and then sat in my lap, never speaking a word. I had to choke back the tears. To see these two very little girls with kindred souls about such things you pray your child never encounters share a moment together that was so tangible to me and heart breaking all the same. To see them ripped from their childlike innocence right there before my eyes was so hard.

ViviAnne has such a nurturing soul and she really thinks through things pertaining to feelings and hurts I know that she is meant to touch people far better than I, myself, ever dreamed. I am so blessed to have my children. I hope I can be successful in showing them that.

Below is an older update that never got posted...

December 21, 2009

MERRY CHRISTMAS!

First off, thank you to everyone who made our first ViviAnne’s Halloween at the Hallow and Golf Scramble such a success!!! Even with the cold and horrible wind I think a good time was had by all.

ViviAnne had a rough time in October and November with a cough that actually started in September and well it finally landed her in the hospital for 6 days. They determined that they (The Docs) would not diagnose it as asthma but Reactive Airway Disease, which is treated the same as asthma only it isn’t a lifelong diagnosis. And as long as she does not seem to suffer from other symptoms in the near future they will leave the diagnosis as such. SO FAR SO GOOD!!

Because of the cough and all the antibiotics and the flu going around she missed all but 3 days of school during the month of November and pretty much the last 2 weeks of October. But once she started back in December she has been great! She really missed school and once back she got nothing but smiley faces everyday! She was so glad to be back I think she didn’t want to rock the boat any.

December’s treatment included the dreaded spinal tap. And it was AWEFUL! The spinal fluid was clear, which is good, but the after effects from sedation were the worst they’ve ever been! She always initially wakes up telling me she loves me and that I have 4 eyes and then she turns into this anxious, crying, angry with a mix of scared little girl. But after about 30 minutes of that she settles down. NOT THIS TIME! This time she turned from the sweetness to the other very quickly and she was hallucinating! It was awful! I cried. I couldn’t get a grip. Thankfully the Anestiaologist was there and she took care of both of us really. I didn’t know what to do. ViviAnne kept jumping and yelling, “WHAT WAS THAT!?” and then she’d ask me to hold her but when I would get close to her to hold her she would get jumpy and tell me to go away. I didn’t know how to console her without aggravating the situation. It went on for about an hour. They’ve decided from now on to put her to sleep with a different drug that does not have all the psychotic side effects but does come with a bit more risk while as

leep. Like needing oxygen while in sedation but that the wake up is much better and I have heard of other Chemo Moms talking about this form of sedation and it seems like the older kids like it better because the wake up is not so terrible. So we will see what that one brings. All I know is Friday was HARD! It took me DAYS to recover. I don’t think I ever will. This too will go into my memory bank of the horrors she and I have faced together with her bearing the brunt of them.

Which always leaves me wondering what she will remember? I have been told that, as with many things, time will erase the memories and she will only subconsciously remember but that her ability to truly recall the horrific feelings will fade. This is the only thing that gives me hope that she can have a childhood. I will carry the memories with me forever. And, I am sure, that this memory will be filed away and rear its nasty head from time to time. Just as these memories did tonight as I lay trying to sleep.

While at the dinner table tonight I looked over at Cooper who will be 3 in just six weeks. The exact age ViviAnne was when she was diagnosed and we were signing off on all the protocols that would govern and save her life. And I thought to myself as Cooper was tearing into his chili, what a baby he is. What a baby she was and how I would love to take back some of the things I have said to them over the past year and a half. It makes me question why we were given a sick child. Not a “whoa is me” kind of questioning but rather a why was this beautiful child with cancer entrusted to us to raise? Brent and I aren’t exactly the poster parents for patience and so why would this stress be given to us? What are we supposed to learn and/or take away from all of this? Will ViviAnne remember all the times I’ve lost my patience or ended up crying in the closet? Will she only remember the hurt at home and not the laughter? Have I given her enough laughter? These are the questions haunting me tonight as I replay memories in my head of things I wish I’d done differently and hope she and Cooper don’t remember.

It reminds me of the Ghost of Christmas Past kind of thing. Like here, Kristen, let’s look at how you lost your cool with your toddler while she was in the hospital getting chemo. (I put her in time out in her hospital room. What kind of mother does that?!) Or let’s look at last Christmas when Brent and you got into a yelling match after him losing his cool with the kids and then I ended up crying on the floor in the laundry room, “Merry Christmas!” were not the words I would have thought of then. How about the times she had to be held down by me and others to get poked by needles, me the woman who is supposed to protect her from all harm. And the time when she fell down on week 2 of treatment and I had no idea that her feet and legs were giving her as much trouble as they were and while I held her hand she cried and said pick me up and I told her no that she could get up by herself and really in truly she couldn’t. I can still picture her little body on the ground holding my hand crying and I said put your feet under you and push yourself up and then she cried some more and Daddy did pick her up but I was SO clueless I just didn’t see that she was not capable of getting up. She wasn’t just a toddler throwing a tantrum. I still cry when I think of it. Oh how wronged she must have felt by me. Her Mother wronged her in a desperate time of need. I deserve Cancer, not her. I deserve whatever physical punishment God can think of, but unfortunately I do not get any, she does.

The plan for this year is to be better and to DO better. For Christmas we will go to Grandma’s and Nana’s and have a Merry Christmas…we shall see.

ViviAnne's Halloween @ The Hollow

2009-09-21T13:11:00.000-04:00

Time for Reflection

2009-09-12T17:49:00.004-04:00

Well it is night and the house is quiet. Both kids are exhausted because of all the comings and goings with ViviAnne going to Pre-K every day and today she started DANCE!! YAY! So they both fell asleep on the couch at about 6:45! Crazy, I know!

The past few weeks have been great! Don’t misunderstand me there have been plenty of squabbles between the kids and me fussing at each of them but we have truly been blessed! ViviAnne is enjoying school and comes home every day with smiley faces (their form of grades) and only a few “needed a reminder” faces but those are ALWAYS for talking. She has been 100% with her helping others, following directions, learning prayers and language skills SO I can deal with the talking because I figure the other stuff is where it really counts! Her temper seems to be getting a bit better too. Sure she has her freak outs and melt downs but she is 4 and we are working on it. But I cannot tell you how incredibly happy and overcome with joy that she is where she is today!!! I could not even see this place a year ago. I longed for it but I did not truly understand the meaning between having a “normal” child and a “sick” child till now! She is still sick but she is getting to do “normal” things and loving it!!

I asked her last week if she had told any of her friends at school about her port, and she responded with “No” and a look like “are you nuts?” Then I asked if she had told anyone at school that she has Cancer, to which she said, “NO” again with the look of are you nuts. So I explained she did not need to tell anyone at all I just wondered and there was no need to talk about it with her friends at all. She just went on back to eating her lunch and never said another word about the subject. I think she knows she is different with her Cancer and her hair (all though it is too cute) and she just wants to keep it under wraps. I can’t say that I blame her.

Today she was explaining to her Daddy and me that her hair MOVES NOW!! Like in the wind when she rides the horses on the play ground. She was VERY happy about it. Too funny how much she takes in, it is no wonder she is wound a bit tight with her temper. She has been through hell and back and has no idea why or how to cope so she just loses it when she doesn’t understand simple things now. Everything is a threat I guess. But, like I said, we are working on it.

At Dance tonight she was so sweet. When I told her she was starting dance today she just smiled the biggest smile and said, “Will I get to use my ballet back pack and shoes?!” I have learned not to tell her things until maybe a couple of hours before it occurs because she just gets so worked up. And in cases like this she would imagine all the things that she would like to happen and if it didn’t play out like she had in her head then she gets upset. I guess we are all a little like that but I just keep her on a day to day schedule except with school. It works better for her little mind. ANYWAY, when we went to ballet she did everything the teacher asked and smiled and would sneak a quick wave to me every now and then. At the end of class a little girl had an “accident” and ViviAnne rushed over to her, put her hand on her back to comfort her and had this very worried look on her face because of the girl crying. To which ViviAnne says, “she just needs her Mommy” as she pats the little one on her back. All the other little girls just kinda stared but ViviAnne ran to the rescue! It was so sweet to see her concern for her.

I did have to leave the room at one time because I started to cry and there I was again being the emotional Mom but this time I got away from people BEFORE the tears fell. I watched her walk on her tip toes in a line across the room. I watched so closely as just 11 months ago this was one of her physical therapy moves because she did not have the strength in her legs to walk well. She sort of swung her right foot around and the left was very unsteady. And to see her do this nearly across the room was just over whelming to me. To see how far she has come and to know that no other girl in this room (THANKFULLY) has had to travel her road was just a lot for my heart to bear. I was thankful. Thankful she is here today, thankful Cooper is happy and tearing the place up like a normal 2 year old boy, thankful that today she has not relapsed and even though she is tired it is from her “normal” life not her “sick” life!! Thank you, God, for getting us through this battle! Even though the war is FAR from over I feel victorious today.

Update

2009-09-10T21:30:00.001-04:00

I know it has been a long time since an update but I am having a hard time finding the time to write an update that is worthy of posting. So, here it goes.

Last Monday ViviAnne started Pre-K! How exciting?! She is doing wonderfully in school and seems to be adjusting well. On her very first day of school I asked her if she wanted Mommy to drop her off or walk her to her classroom. There was a rather long and silent pause from her to which I knew she was giving it some serious thought. Then, to my surprise, she answered back, “I want you just to drop me off.” I was floored. I explained to her what that meant and she said back, “I know I know I want you to drop me off.” So I did. Except she did forget to grab her backpack on the way out of the car so I did have to get out to give it to her and she was in serious, school mode. Actually I think she was overwhelmed and a little scared but the point is she did not say a WORD or even look around she just kept her eyes straight ahead and walked towards the doors with her teacher. I was standing there waving and saying, “Bye, ViviAnne, bye honey” and she never turned around or anything. I think the only thing she could hear was her heart beat and own breathing at that point because the teacher had to lead her with her hand on her shoulder. I, on the other hand, heard nothing but her silence and my heart breaking. I returned home to tell Brent what had happened and he just smiled this understanding smile for me but proud smile for her. Then Cooper and I went to my Moms and I told her and cried. I was that Mom standing in the carpool lane, blocking it even, begging for their child to wave. For the next two days she did not say good bye to me when she got out. Then on Thursday I heard her little voice say, “Bye, Mommy!” And I turned and looked over my shoulder to see her turned around and waving. I nearly wrecked the van as I arched my back to wave and yell, “Bye HONEY!”

Tuesday was ViviAnne’s 4^th Birthday. She had a wonderful day and even came over to me at my Mom’s house while we were getting ready for dinner and gave me a hug and said, “I really do like my Birthday, Mommy.” She had gotten a bit sassy early so I think she thought I was upset with her. I was with the sass but not with her for the day or anything. She received a Pink Soccer Ball from my Mom for her birthday which she was so excited about she stopped opening the present when she realized what it was and started to jump up and down and squeal. I guess she liked it?! I had to finish taking the wrapping paper off. She had decided though that she was NOT 4 until after she blew out her candles on her cake. So the next day at school she was on the playground throwing her hands in the air while yelling, “I’m 4 now! I’m 4 now!” Too funny.

Friday ViviAnne missed school for treatment. She did not want me in the room while they pricked her finger for her blood tests. She instructed me to stand in the hall. She could see me because basically I stood in the doorway but that was where she wanted me. She looked at the tech and said, “I’m 4 now so I am a big girl.” She did not cry when they took her port out this time but you could tell she was trying REALLY hard not to. She just laid her head on my just and wimpered a little bit.

She was diagnosed with a sinus infection while there and they also informed me that, yet again, her counts are too high! CRAP!! What does this mean?! She can’t have her 6MP pill increased (that is her daily meds) it is already at 100%. They can still increase Methotrexate and Vinchristine but those are the MORE toxic drugs so I’d rather not, but if that is what HAS to be done then we will. They are gonna wait and see what next month brings. They also ran a count on her IGG. It is a part of her immune system they can increase for fear it may be too low. So they told me not to be surprised if I get a call to bring her in for an IV drip in 2 weeks. We shall see. I have no idea how a low IGG and a high ANC go together but I do plan on calling and asking this week. I am just a tad nervous about these high counts, AGAIN!

She is tired and emotional this round of steroids. No real hunger yet but the tired part hit pretty much the day after treatment. But with school and a sinus infection and CHEMO who wouldn’t be tired. I’d want to just crawl in a hole with all that. But she treads on and is very excited about school this week too.

I’ll update about IGG and high ANC as I get the info. I will even post some pics from school and birthday.

ViviAnne is 4!!!

2009-09-02T03:18:00.007-04:00

Fall Fundraiser

2009-08-15T23:36:00.004-04:00

Written by Aunt Stacey

Everyone mark their calendars for October 17 2009...we are having a fundraiser for ViviAnne's treatment! It is going to be a Family Fair type of event in Oldham County so come on out and bring the kids to have some Fall FUN!! Music, food, games, cornhole, and much more. We will also be doing raffles and silent auctions on donated goods and services.

We are still working out the details, but wanted to give everyone as much notice as possible. More info to come soon:)

PHEW!

2009-08-06T00:36:00.006-04:00

Let me see, where do I begin? Well, I suppose I should start with some exciting news. The increase of ViviAnne’s Chemo did the trick, her counts have all come down but not below the cut offs!! SO they are going to keep her at this increased chemo level and she seems to be tolerating rather well. She is such a trooper. Steroids have been rough with the attitude this go around BUT it could also be do to the fact that she has had an INCREDIBLEY busy last week!!
Here is how it all went….
Monday through Wednesday of last week ViviAnne attended Cheerleading Camp at my niece’s high school. Madison, my niece, is a Varsity Cheerleader and they do this for a fundraiser. ViviAnne was permitted to go into the 2nd grade group with her cousin, Abigail, because the two of them are attached at the hip when they are together. ViviAnne had a GREAT time. What little girl wouldn’t, she was encouraged to yell and jump around while INSIDE. These are two things that are frowned upon at home; she was loving it! GO REBELS GO!
Thursday morning was her Chemo day and the start of 5 days of steroids. She did as usual. No tears until after they took the needle out of her port. It is like she takes all her energy to keep it together and then the moment it is over she just lets the tears fall. My heart breaks for her. To think of how my very young little girl has the ability to pump herself up mentally and emotionally for all that she has to endure and she responds like I would and I think ANYONE would, with tears when it is all over. It is really something else. I was told more than once this weekend that she seems more mature than a 4 year old and in a lot of ways, she is!
ViviAnne was a flower girl this weekend in a wedding for Cousin Debbie’s daughter, Shelby. So, we had quite a few things to do over the weekend after an already busy week. Thursday evening we went to a cook out and both ViviAnne and Cooper swam and met one of the ring bearers. We had a good time and the kids loved swimming, as always. Cooper even went down the water slide and LOVED IT!

Friday Kim and I took ViviAnne to a bridal luncheon where she wore her fancy dress with her pink pearls and she was very well behaved. Shelby gave her the cutest bear from Build-a-Bear that was decked out in pink princess, ballet wear and even with a cell phone and crown, right up ViviAnne’s alley. Shelby recorded herself saying, “ViviAnne , you look FABULOUS!” and when you press the paw that is what you hear. She just loves it! That evening was the rehearsal and she practiced pretty well and then the dinner at Captain’s Quarters, she really enjoyed watching all the big boats and ducks and she is a BIG fan of Shelby. In her eyes she is the best thing since sliced bread.

Saturday was the big day! Poor Shelby and ViviAnne were off to a rocky start. But after a little bit of sprite and fanning and some bribery, only for ViviAnne though, the wedding went off BEAUTIFULLY! ViviAnne walked down the aisle and smiled when told to and stood where told as well, the only thing she did not do was drop the petals onto the floor. I think we had spent so much time telling her NOT to drop her petals and putting them back into the basket she just thought they were not supposed to come out of the basket at all. She really was precious and Shelby was GORGEOUS!
ViviAnne and Cooper both danced and Cooper behaved himself BEAUTIFULLY! ViviAnne on the other hand I think had just had enough. She was in tears and fighting with her Daddy and by 9PM she was up in the room ready for bed. She said to me through a little bit of tears, “Mommy, it was just A LOT! I’m sorry I behaved that way, but I am tired,” And you know what, I could not argue that at all. She had so many people she didn’t know telling her how cute she is and wonderful she did and couple that with being tired and on steroids and you get one worn out little girl and one worn out Mommy.

Needless to say Sunday and Monday have both been low key at home days. She did not even want to play outside today and the weather was wonderful. But I was not going to make her because honestly I did not care.
I was telling Brent how worn out I was and kind of complaining but you know what I take that all back! How lucky are we to be able to do these things with her?!? This time last year she could barely move from all the pain of the chemo and swelling from the steroids. We weren’t sleeping and all I could think about was, please let her survive! I mean exactly ONE YEAR AGO this is what was happening. I could not have even dreamt that I would be able to do cheer camp with her or allow her to be a flower girl! And now, I just PRAY that she does not ever relapse so that we do not have to relive that horrible HELL! Oh man, what a difference between Induction and Maintenance!! God is good and I have realized that somehow along the way I have embraced this life of Cancer. No, it is not a life I would have chosen and yes I do still get upset when I think about all that was taken from me, things I will never know or the fact that the constant steroid levels in my baby have altered her from who she could have been BUT I try really hard not to dwell on it. I allow myself to have the feelings but I don’t dwell. Because this is my life, I can’t change it and I have no choice but to try and make the best of it. It is kinda like Brent says, “If you want to see God laugh, think that you are in control.”

Tomorrow is the 16th!

2009-07-16T00:39:00.007-04:00

Daddy Writes:
I sat down at my computer tonight like I do every night after everyone goes to bed and the house is finally quiet. But unlike the typical nights I didn’t open up Autocad and get busy working on drawings or jump onto Facebook to follow everyone else’s life and procrastinate working. I didn’t check my email or the bank accounts. I just sat down and for some reason lost control of my emotions. Today was a normal day; no more stressful than any other, normal fights and fits, one kid went to bed easily, the other required some work, Kristen and I had few squabbles but nothing major.

I could not figure out what the hell was a matter with me. I thought to myself that I haven’t been a mess like this for a long time…for like a year…and then it hit me like a ton of bricks. A little bit of panic set in. I had to find a picture or something so I started digging through the archives of my hard drive with some sense of urgency. I kept going further and further back in time. I could not find what I was looking for because I didn’t know what it was. The process of scavenging through pictures and blog post and old emails was like a horrible series of flashbacks. Like you would image your life passing before your eyes with every thumbnail and preview recalling a time or memory but everything that popped up on my screen was in the last 12 months. And then this image popped up…

And I realized it was what I was looking for and I just flat out lost it. This was one of my favorite pictures of ViviAnne before she was diagnosed. As stupid as it sounds, it’s like my subconscious had booked marked today’s date. I couldn’t remember my life before July 15^th of last year.

I continued to dig through emails trying to recover what I was doing, what I thought and cared about because I clearly don’t anymore. I don’t remember a lot of things from High School and College…but there is a logical explanation for that. Why can’t I see back just 13 months ago? The more I think about it the more I realized that I have been doing this for the past few weeks leading up to today. Taking ViviAnne yesterday to meet people and see jobs I work on in 2007, All of us going to Lexington in the middle of a day on a Monday just to stop in at RTA just to say “Hi”, Driving by the old house, Quitting my job (maybe…maybe not), just to name a few. I have been numb for a long time. I miss who she was before all of this. I miss who we all were before this. I hate that Cooper has seen the worst of me. I miss the relationship I had with my wife. I miss our friends. I’m tired of telling everyone we are "fine" and "doing great". I hate who I have become. I WANT MY LIFE BACK!

Sorry for the pitty-party but that is today in my life.

This is me closing a chapter…Tomorrow is the 16^th!

Hair Pics from Aunt Stacey

2009-07-09T14:38:00.002-04:00

HAIR!

2009-07-01T19:43:00.001-04:00

2009-06-14T18:33:00.004-04:00

Delayed Update

A week ago ViviAnne received treatment. Her counts were still VERY high so one more month and then they will need to adjust her chemo pill to a higher dose if the counts remain high. As stated before, too high of counts means her body is processing the chemo too quickly and the chances of relapse are higher when counts remain too high for too long. It is all a balancing act. This time the chemo seemed to hit her hard! She was her usual angry, hungry self from the steroids and she had NO energy. She would want so badly to play, and would for a bit, and then she would go and lay down. You could tell she just did not feel well and was angry that she didn’t feel well. It took about a whole week and then she felt better. She has such an attitude this week too! But this could be a 3 year old with chemo brain too. Not a good combo.

Her hair is really growing and she has a cute little tan from swimming and her hair is getting white from the sun. I think it might be curly. The whole back of her head is wavy and the sides are long enough to be over her ears now and it is starting to curl up too. We shall see!

Even though this time of our live is trying I am reminded daily by acts of kindness from friends, family and strangers that God does have his hand in all of this. It is really comforting to know people are out there praying for us and supporting us through all of this.

Thank you Jindy and Christy...

Brent’s cousin, Christy, and her new husband Jindy have written very encouraging words on the blog and sent cards with words of prayer and encouragement as well from the very beginning of ViviAnne’s treatment. Well, now these two beautiful people have even gone one step further. They asked all of the guests at there Texas wedding reception to not bring them gifts but instead to use that money and donate to ViviAnne’s Fund! HOW AMAZING and UNSELFISH is this!?!?! To forego wedding presents so our family can have a bit of the financial strain lifted is too awesome for words!! We thank you for all of your kindness and love, Jindy and Christy. And to your guests who donated as well. Thank you!!

HILARIOUS!

2009-06-05T19:58:00.001-04:00

**This was written by Kristen last week.

ViviAnne has had a good week this week. She is still her sassy, strong willed self but she is sooo funny too. Lately it has been all about dancing and gymnastics at our house. She loves to dance and watch others dance and do her gymnastics “tricks”. I will be finding a place that offers both of these services to her if we can swing the money. I wish I could somehow explain her dance moves. Simply writing, “With one hand on her hip and the other arm out stretched she shakes her little hips and taps her foot” REALLY does not do the dance justice. It is too funny!!

And Cooper! OH MY! Today I squirted him with water while we were at Grandma’s pool and he thought it was funny. Well, then he got out of the pool and I went to squirt him again and he said, “HA HA HA, you can’t get me now!” He is so funny and SMART! With the two of them being so smart and close in age I am gonna have to really work to stay one step ahead of them. We’ll see how it goes.

I’ll up load their Mother’s Day Out pics too. They are very expressive of their personalities. Ms. ViviAnne with her “sassy, dance pose” and Mr. Cooper and his “laid back, cool guy pose” and according to the director these were not poses the photographer told them to do. Just told them to pose and something along those lines and my kids being so comfortable in front on the camera went into full on “cheeeeese” mode.

It is late and I had a good day with them today and yesterday so I am not gonna get into some of the bad things that have happened over the course of the past 3 weeks and just go to bed basking in my children’s humor and innocence. Chemo is next Friday. YUCK!

Update

2009-05-18T13:41:00.001-04:00

I definitely think this time the coming OFF of steroids was worse than being ON them. She has lashed out more being off of them but we are working on it. On the plus side, her sleeping has gotten better the past 3 nights. She was only sleeping for about 5 hours while on the steroids but she has slept through the night for the past 3 nights. This is a HUGE help to my sanity. I am a person who needs sleep and although I do not get it I can only tolerate no sleep for so many days and then I physically get ill. Back when she was first diagnosed I could go a week straight with very little sleep before crashing, now about 4-5 days is my limit and then I’m sacked out, so her timing was perfect on sleeping through the night.

ViviAnne was looking at pictures online of an 11 year old boy she knows from clinic, Jesse, who we have referred to in previous posts, and she said “Oh, he looks like a PRINCE!” He was dressed up and she thought he looked nice. She thinks any man dressed nicely with a “Mommy” must be a Prince so this was a complement to Jesse.

She and Cooper were playing last week, and by playing I mean rolling on the floor, and Coop all of the sudden stands up and says, “Ouch, Sissy, you hurt my port.” As he is holding is chest in the exact spot she has a port. I tried very hard not to laugh but did tell him he doesn’t have a port. She is convinced that one day he too will get a port and telling her other wise is like spitting into the wind, so I don’t.

She is doing great besides the temper this past week, hopefully that will fade too and then we will go in for another treatment, but this is our cycle. I think of the ebb and flow of the ocean waves when I think of her cancer treatment schedule. And like the waves sometimes the crashes and roars are very loud and turbulent. But with the help of God, family and friends we are navigating through these waves.

Update from Kristen

2009-05-11T14:20:00.004-04:00

I took ViviAnne to clinic this past Friday for her monthly round of chemo and steroid start. She did great, as usual. She cried a little because she didn’t get to go to the hospital! (Yes, you read that right.) They spoil her over there and she doesn’t mind going and playing and getting all the attention. She is always given a drug that erases part of her memory of the day so she NEVER remembers her actual treatments. So she was upset when she was told, “No hospital today,” Oh, the mind of a 3 year old!?

This round of steroids hasn’t been as difficult as last month, so far. She hasn’t complained about her legs either so she must have tolerated the chemo pretty well. Her counts are VERY high. So high in fact that if they remain this high next month they are going to up her 6MP (daily chemo pill) dosage. This pill is supposed to suppress counts some and if it is not doing so then there is the risk it is not high enough and doing its job of ridding her body of cancer. Was that clear? Let me break it down a bit more. If the 6MP dosage isn’t high enough for a long period of time or isn’t working then RELAPSE of cancer is the side effect. It is this weird balancing act. You don’t want too low of counts BUT you don’t want too high of counts either. So we will see what this next month holds.

She has been very active and you can tell that all last week she felt great. She is REALLY testing her limits now with us. That whole "I’m gonna do what I wanna do" is in full bloom. Her pediatrician assured me to just stand my ground with her so we as parents can run the house, not her. She has for about 7-8 months SO regaining our control is going to be a long, long, LONG road but it is a road we need to travel.

Oh, here is a new funny line of hers. “You are ripping my sound!” This is yelled at Cooper when he interrupts her while she is talking, and she is ALWAYS talking. She has also discovered funny faces and is trying to figure out the concept of rhyming. It goes a little something like this, “Bruce…..that looks like bruise. You know bruise on my leg.” So she is getting that words sound similar and can pick out words that kinda match but the rhyming still hasn’t come yet. She can also add the number 1 to any number 1-5 and know the sum. She calls it her “plusses”. She’ll say, “1 plus is 2, 2 plus is 3...” and so on. She doesn’t always think to say the 1 but sometimes she does. But boy oh boy she has it down pat! She can mix it up and start with 4+1 and then move to 2+1 and such, so it is no longer the pattern she has memorized but actually how to do it! I personally think this is AMAZING from a little one who does not attend preschool or day care. The Mothers Day Out program works on letters, not numbers. Isn’t she great?!?!?

Her hair is BEAUTIFUL! It has grown in even and thick and is a darker blonde than it was before but is blonde still. People ask me if I’ve cut it because it is all even and thick. I just say, “Cut it?!?! No, it is growing in!” If I tried to cut her hair she would lose her mind on me! Well, since everyone is doting on how great her hair looks while getting her ready for church on Sunday I asked if she wanted a hat and she replied, “No, I want people to see my beautiful hair.” Fair enough. Show that hair off, baby!!!

Where has the time gone?

2009-04-23T13:22:00.009-04:00

Sorry it has been so long since our last post. I can’t believe we’ve neglected the blog for a month! Rest assured we will do our best to not let this happen again.

Let’s see, where do I begin? Well, ViviAnne received her Vinchristine and Spinal Tap with Methotrexate on April 10th and did wonderfully. She was a little pissed when she woke up from the spinal tap but this has become to be expected. Her initial wake up is always the same, “Mommy, I love you. How are you? You have two eyes.” The last part she means two SETS of eyes. And then once she becomes more coherent she doesn’t remember helping to push in her meds, because that is the highlight for her getting to help push, and she becomes angry because she doesn’t remember pushing it and thinks she hasn’t done and needs to do it. Remember, a change in the routine freaks her out so her not remembering a big part of the routine and the nurses and me telling her that she did in fact do it makes her little 3 year old groggy brain flip and she gets MAD! But once this wears off she is back to her normal self, just sleepy.

She was VERY irritable on Easter and all weekend due to the steroids SO we made the most with what we had. She did get to wear her fancy dress and go to church and did an Easter Egg Hunt at Grandma’s. She was bummed the eggs were empty BUT she still had a good time. Cooper of course did great at finding the eggs because he didn’t care of they were empty or not.

We have been getting along as best as we can. We have found our own rhythm in the house and it is probably different than others but that is okay. It works for us. She and Cooper are enjoying a semi-normal childhood with trips to the YMCA 3-4 times a week while I work out and a play group one day a week at Gilda’s Club with a Mother’s Day Out program at church for 3 hours one day a week as well. We just wash the crap out of their hands and it has become expected by them to wash hands A LOT!!!

With the weather getting warmer both of the kids get irritated on the days that it rains or is cold (gotta love Crazy Kentucky weather) but with temporary tattoos, movies, books, dancing and music we pass the time on bad weather days.

We did go to Orlando the week of Spring Break and went to the beach and Sea World. I will post pics and write another post just on our trip.

Hope everyone is doing well! Thanks for all the prayers, they are working.

ViviAnne's 3am Conversation

2009-03-22T09:34:00.000-04:00

So, there are a lot of nights when ViviAnne will wake up around 3 and stay awake for an hour. And since I am usually in bed with her already from her 11PM wake up she wants to talk, I know shocker.

This morning was a talk I allowed her to have and didn't once ask her to please be quiet and go back to sleep. She started telling me that she did not want to match her Papa any more that she wanted to match me again. (Her hair.) She said she was so beautiful when we got her hair cut like mine (back in August) and she wanted to be again. I assured her she IS beautiful and that her hair is growing back and she and I will match again. Then she started to tear up and she yanked her sleeping hat off and said very sternly, "no it is not! Look! I don't have my blonde hair yet! I look like Papa! And he said we need to match and I don't want to get my hair cut tomorrow!" She said she heard Papa say that she was going too when we take Cooper an Brent to get hair cuts on Saturday and she thought she would be getting her hair cut as well. So I pulled out my assuring mommy tone and said, "I make the decisions on your hair, not Papa, and I say we will not be getting your hair cut tomorrow and you will not and do not match Papa any more. We are going to grow your hair long and you will match me." She dried her little eyes and said, "Okay, thanks. Yeah, Gramma makes the decisions for Papa so we'll just tell her that I'm not gonna match him any more." Then she gave me a hug and said, "I love you. Can you hold me?" And of course I did.

What a discussion to have with a three year old at 3AM! She was so articulate in her thoughts. She never was stumbled on her words or got worked up into a scream. For a moment I felt like I was talking to a 13 year old not a 3 year old. Well, atleast no one has to wonder how she feels on the matter. She is OVER not matching me.

8 months and 1 day

2009-03-16T14:21:00.000-04:00

That is how long ago ViviAnne was diagnosed with ALL. I can't believe it has been that long. I can barely remember life before cancer. Cooper was only 17 months old when she was diagnosed and now he is full fledged 2. ViviAnne could not express to me exactly what hurt just that she hurt. Now she tells me, "my tummy hurts". MAN 8 months changes A LOT.

I thought back to when ViviAnne was 17 months old and a colic and reflux filled Cooper entered our lives. He never slept and rarely was calm. He remained like this for 6 months. So I barely remember ViviAnne changing from that sweet little 17 month old baby into a sassy strong willed 2 year old. It just happened. Now here I am again. I can not remember Cooper either from 17 months to 2 years old. ViviAnne was the demanding one this time. My hope is that one day I will lead a life where my entire family sleeps through the night all at one time. That both of my children will be healthy and active and I won't live in fear of germs, ports being damaged or strange bruises. Oh what a difference 8 months makes.

This weekend she did okay. Yesterday her eyes looked dark and she seemed a bit tired but she fought off a nap like a normal 3 year old. Today however she asked to take her nap at 12:30. Wanted jammies to be comfy in and everything. Those steroids and Vinchristine just knock her out for about 4-5 days. But at least she can get some rest. Her moods are not quite as bad this time. Well, the swings aren't as often I should say.

Spring is coming! I will be glad to let the kiddos ride their bikes and play outside. And so will they. ViviAnne has been telling everyone the past couple of days that, "this weather is crazy! It is supposed to be warm so we can play outside! Silly weather." Cooper made up a song. It is The Papa song. And well that is the whole song just sang at different intervals and pitches with arms stretched up to the sky. The boy LOVES his Papa. So at least there are some things to smile about. I'll take them when I can.

Counts are Up!

2009-03-14T14:43:00.003-04:00

Written by Mommy

I took ViviAnne to the clinic on Friday morning to check counts and try to resume chemo. AND WE DID!!! Her counts were up to 1700 and she was looking good. She wakes up early on clinic days, just the anticipation of it I suppose. This clinic day she woke up at 4:30 AM! That is right 4:30 in the morning talking and ready to go. I of course was not soooo it made for a very long day!

She did wonderfully as usual. She explained to a nursing student that the reason she comes to the clinic is because she has cancer. It tears my heart apart everytime I hear her say that. She sat and chatted and made a building with blocks telling the nursing student about her port, Cooper, my rib breaking and me not being able to hold babies and on and on. She is always pretty easy to chit chat one on one with a woman.

Then we were off to the hospital to visit C.J. I had explained to ViviAnne that C.J. now has cancer too and he has a port and will be going to the clinic to see Dr. Ayyanar. She responded with "that's crazy!" I then explained that he too would be getting his port done by Francis (ViviAnne's FAVORITE nurse) and she then got this very serious look on her face and said, "No, not Francis I don't want to share Francis".

C.J. looked good. He was still nervous when we first walked in but once he figured out we weren't there to poke him or listen to him he sat up and smiled and teased his Mommy. It was nice to see him smile! ViviAnne brought him a sucker and he shared some chewies with her. It is great that they have one another. Crappy that it has to be like this.

Oh yeah. Friday Morning Cooper was supposed to go spend the day at Papa's shop because Kim was going with ViviAnne and I to the clinic. WELL he was sick. So Brent stayed home with him and played "Catch the vomit". I personally think he is a hero for taking on that job. Cooper wants his Daddy when he is sick though. They are snuggle buddies. Brent said the first vomit played out like this. He and Cooper were laying in bed, snuggling of course, when Cooper looked over at Brent and said, "Oh no!" Brent grabbed a towel to catch it just in time for Coop to throw up on Brent's arm. Poor guys! Needless to say we kept ViviAnne and Cooper seperated for the day. At around lunch time Cooper turned the corner and has been fine ever since.

I am trying to think positive. The weather is supposed to warm up and so my kids will get healthy and we can get back to a normal life until counts drop again which will hopefully not be for a very, very long time.

Special Prayers

2009-03-10T22:35:00.004-04:00

On a very serious note:
This horrible disease has struck another member of my extended family. My cousin Greg and his wife Sheree are tending to little CJ at Kosairs this week. CJ is about 8 months older and ViviAnne thinks the world of him. He was just diagnosed with A.L.L. also. The protocol is little tougher on boys. So please place them in your prayers.

I have asked Stacey to remove the ChipIn widget from our blog. If you still feel inclined to show your support, please consider contributing to CJ's Treatment Fund. We have been truly blessed by all of your love and support and will be making every attempt to pay it forward.

Stacey has created a similar blog for CJ.
http://bravecj.blogspot.com/

Thank you all.

Brent

Update from Daddy

2009-03-10T21:29:00.006-04:00

Update from Daddy

Well it has been a week since our last update. I take the blame for that as it appears that I am the last one standing.

To recap:
2/19 Cooper – Pediatrician: RSV
2/22 Cooper – Hospital: Puncture Wound
2/23-2/26 ViviAnne - Hospital: Fevers & RSV
2/28 ViviAnne - Pediatrician: Counts
3/03 ViviAnne – Clinic: Counts to low No Treatment.
3/04 Kristen – Hospital: Broken Rib

Yes a broken rib! I swear God is looking down and cackling “Dance Monkey!!!”

She had been coughing for 4-5 weeks continually getting RSV I suppose (see above). Her side had been sore for a few days like a pulled muscle. Then Kristen called me at work muffled and crying “Can you come home...I coughed...something popped...I hit the floor and can't move.” I said “Maybe Later”...not really. I rushed home. Cooper met me at the top of the stairs naked from the waste down. ViviAnne said "Daddy hurry something popped out of Mommy." I find Kristen laying on her side positioned like the statue of liberty between the bed and the dresser. Her cell phone in her hand. Cooper's toy cellphone laying at her head. Evidently I missed a pretend 911 call from ViviAnne telling me that Mommy was down and I needed to come home right now. Followed by a “Yeah” “Okay” and “Don't worry Mommy daddy is on his way.” As I came around to her side I stepped into a pile of lotion in the carpet which brought to my attention that she was covered in lotion. All hell had evidently broken lose on my way home. Kristen couldn't move to fight them off. They doused her in lotion to help the pain, ViviAnne rushed and made a Get Well Card, Coop pee'd himself and even worse cleaned it up himself. It was like “Lord of the Flies” in my bedroom.

A very special thanks to Mom and Stacey for ridding us of kids for a few days so she could start to recover. Kristen is moving a round a bit better this week. I think she over did it today though. She looked to be in a lot of pain when I got home from work.

To say the least I'm walking on egg shells constantly wondering what is going to get me. Will it be one of the branches from the ice storm still dangerously looming at the top of the tree, or maybe something as random as a low flying bird, maybe bird-flu, or restless leg syndrome.

I'm due.

Quick Update from Mommy

2009-03-04T00:25:00.001-05:00

I took ViviAnne to the clinic today. Her ANC dropped to 500! So more home bound for us! I am very upset by this. Too upset to even express my emotions. I need to sit and be quiet to sort them all out. But as you can imagine I don't get many opportunities for that.

I will tell everyone this; she will not resume chemo until March 13th if her counts are up by then. A full 2.5 weeks with no chemo!!! Not a good thing in my book. She complains about her knees and back hurting here and there too. I'm nervous and scared and mad and AAAGGGHHH!!!!! That is all I can say for now.

Counts Update

2009-02-28T14:13:00.001-05:00

I took ViviAnne to the pediatrician again this morning for a counts check and to make sure she is still recovering. Her cough is getting more and more spaced out and there is just a tiny bit of crackle in her lungs. Her ANC was 810 this morning. So the counts are coming up, VERY slowly but coming up none the less. She is pretty worn out. 2 hour naps everyday and still asleep by 8:30PM at the latest. And that is with her wanting to put her jammies on at 7PM. She just wears out. That too should pass with counts coming up and the RSV ending. Just in time to receive another round of steroids and IV push on the 13th. If it was like last month that will wipe her out too with more naps and early bed times.

She is VERY irritable this week. I'm sure it is just the combination of hospital stay, 2 trips to the doctor and being sick AND low blood counts. Still, it is trying on our patience. Her tone and mouth are the worse! She isn't violent or anythng just incredibly sassy. I call her Judy Attitudy when she is like this. It is my one way of trying not to snap her head off! Sometimes I succeed and other times I don't.

As she was sitting on the floor crying today just from being overwhelmed and worn out she said to me, "I don't like 3!" and I replied, "That makes two of us honey!"

Released

2009-02-26T01:13:00.000-05:00

Well at the late hour of 10PM ViviAnne and I left Kosairs. We were in isolation the entire time which meant no playroom or really visitors either. She was incredibly stir crazy and ready to go home as was I.

Here is what we know. Her ANC is only 460 so she is home bound again. Her platelets and HMG are low too but no need to transfuse as long as they maintain where they are. If her HMG drops more she'll need a blood transfusion. SO they are holding her chemo until her counts come up. I will be taking her to the pediatrician tomorrow for a counts check and to make sure she is doing okay. Then back to the clinic next week for a recheck and to see if we can resume chemo. Of course the scare of relapse is always on the radar but I think with the high fevers and prolonged cough her body just gave out and that is the cause for her counts to go into the toilet. I HOPE and PRAY that is the case and that we can get chemo going again next week. But as always no hard core answers on what all this means. Just educated guesses. Keep ya posted.

Update

2009-02-24T17:43:00.003-05:00

Update from Aunt Stacey

ViviAnne is still at the hospital. She tested positive for RSV today. I'm not sure why it did not show up yesterday, but it did today. She is still getting fevers and they will not release her until she has gone at least 24 hours with out one.

From what I understand the doctors are concerned but not alarmed. They are primarily just concerned about getting the fevers to stop and are hesitant to send her home until that happens.

Kristen said ViviAnne is doing okay, the not feeling good comes and goes. She is primarily just bored since she is not allowed to go to the playroom since she is sick. Kristen is trying to keep her occupied with movies and games.

Grammaw is helping Brent out with Cooper. He is doing fine by the way, the cut on his head is healing with no complications.

What a week for Brent and Kristen. I wish I could take all these problems away from them.

I'll update again tomorrow.

Back in the Hospital

2009-02-23T14:48:00.003-05:00

Update from Grammaw

ViviAnne is back in the hospital. She woke up with a fever 4 am this morning and was admitted back at Kosair 5 am today. She will spend the night. At last update, she did not have a virus, no RSV, still waiting for her chest xray. She has had a cough for over a week and they are afraid it may turn into pneumonia. She is on IV antibiotics and fluids. Better safe than sorry. If all goes well she will probably come home tomorrow or the next day.

She's not enjoying this hospital stay because everyone has to wear a mask and she cannot go to the playroom. REALLY?!! I'm sure she is enlightening them on that rule! All for her best interest though!

Mommy and Daddy at least got to visit with friends in Lexington for Saturday and Saturday night. They got home in time to go to a baby shower where Cooper fell and cut his head. Kristen had him at the emergency room to check him out, got home went to bed and returned with ViviAnne a few hours later. Cooper is fine, he didn't require any stitches.

Below is a video from Saturday night. Enjoy!

**you may need to upgrade the latest version of flash to view the video.

Eat it Coop! from stacey downey on Vimeo.

Treatment and Preschool

2009-02-20T14:04:00.001-05:00

Last Friday ViviAnne went to the clinic for a Vinchristine IV Push and started another 5 day pulse of steroids. She also had a cold but the doctor said her lungs sound fine so as long as she remains the same and progresses to recover in the next 2 weeks everything will be fine. But all of that left her feeling VERY tired all weekend and rather cranky. SO we only went to the YMCA on Saturday and then the rest of the weekend she stayed low key.

She is off steroids now. The food craving this time was Peanut Butter and Jelly with no crusts cut into triangles. Easy enough! But today will be the last day I allow her to only eat that! Her belly is hurting tonight and she is having a little constipation but I think we are ahead of it so it shouldn't get as bad as it has in the past.

Cooper is terribly sick. I took him to the doctor yesterday and he said it looks like RSV. Which both kids had last winter and Cooper did breathing treatments for but this year he isn't as bad, largely due to his age. SO it is just a very bad cold. Which he has proceeded to give BACK to me. The three of us, ViviAnne, Cooper and myself, have the exact same sounding cough that is more annoying than anything else.

I kept Cooper home from Mother's Day Out but allowed ViviAnne to go (we call it her preschool) and I got the BEST report on her today. Her teacher called her "a ray of sunshine for the other little girls in the class". Apparently she gets all the little girls playing together even the one little girl who is incredibly shy will interact with ViviAnne! How great is that? She orchestrates the play group and they all are just drawn to her. I was afraid it would be the opposite since she is bald so this just made me light up inside. It also made me feel like ViviAnne really is the sweet girl I always knew she could be. And a leader.

Then on the the way out the music lady said ViviAnne learned all 3 songs and the dance moves in just the 3 weeks she has been attending and that now kids who used to not sing and dance do b/c the just follow ViviAnne. Also, she is the loudest singer (shocker!) but she did say ViviAnne dances to the beat very well.

I was so overcome with joy when I left preschool today. Knowing that I have stories that are "normal" three year old stories to share and not what has been the normal story for us with her, which is "she is so brave! she doesn't even cry when they stick her finger!"

Beautiful Girl

2009-02-18T18:20:00.004-05:00

Pics from Aunt Stacey

Busy Week

2009-02-06T15:12:00.001-05:00

Sorry we have been slacking on the blog posts. This week has been a great week! ViviAnne and Cooper both went to the YMCA with me 3 times this week. This is the first week in 7 months that this has happened! Both of the kids LOVE it there so it was a great step back into a normal life for us and both of the kids loved having it return to us as well. With ViviAnne's low immune system and intense chemo the past 6 months things such as the YMCA were off limits to her and so we made them off limits to Cooper as well, to lessen her chances of getting sick. And it worked but it was very hard.

The past month I have been trying to let her lead a normal life but that has not been easy. Every day I think, "well, let's just wait one more day." I am mixed with fear and excitement at a semi normal life. But this week I took the plunge. I enrolled her in preschool for the fall, took her to the YMCA AND on Thursday both kids went to a Mothers' Day Out program at church from 9-12. They are seperated by age so the two of them were not in the same room, like they are in the YMCA. This was a HUGE step for all of us. (Well, maybe more me than them but whatever.) 3 whole hours with NO kids. I didn't know how to act! I suppose I'll get the hang of it though. :)

Cooper walks into the room like he owns it and ViviAnne was so excited to go to "school" and meet new friends. She did ask if they had ports and if they knew she wouldn't have hair but she did okay with the fact that they do not have ports and that they all have hair and not her. When I picked her up her teacher said, "she is so sweet. And she played so well with all the little girls. She would just lead them all into playing with all sorts of things!" Big shock, ViviAnne is sweet and is quiet the little leader. Which works well if other children will follow, if not then she will try to MAKE them follow. It can be trying at times with her to realize she is NOT the boss. Cooper's report is always the same. Sweet, funny and very verbal. Which he is all of these things!

Thursday night Brent and I took ViviAnne to a YMCA dinner to help with their Spirit Campaign. It is a wonderful program that helps people who can not afford camps and memeberships to still get to attend with the Spirit Program. We have been extended a memebership at our local YMCA through this program and we are SOOOO THANKFUL for that. If it weren't for the Spirit Campaign and the people who donate to it our family would not be able to afford a YMCA membership and our family would not be complete. So we of course said yes we would be willing to share our story to the crowd of 250+ of what the YMCA and the Spirit Campaign means to us. It was great. Brent and I both teared up on stage as we shared our story of ViviAnne's diganosis,how we had been YMCA members for a year prior but had to terminate our membership b/c of cancer and how giving us a membership through the Spirit Program gave us back something that cancer had taken from us. ViviAnne did wonderfully and was such a little lady all night. She was polite and sat with her fancy dress and napkin in her lap being so great. She did hit the wall around 8, when it ended and all the people coming up to talk to us just overwhelmed her so we said our good byes and left. It truly was a great night and a WONDERFUL program. We are so thankful!

THEN on Friday morning ViviAnne went to Kosair's to talk on the radio. She was on 102.3 and she told them (with absolutely NO coaching) that the reason she comes to the hospital is because she has cancer. I nearly dropped to floor to hear her say this. All I had told her was we were going to the hospital to talk on a microphone to people. That was it, the rest was all her. She said things like, Cooper is 2 and doesn't go to the clinic, and I have cancer and I am 3 and my name is ViviAnne! It was amazing to watch. Then on 99.7 she wasn't much into talking so I did all the talking. It was really a great way to help raise awareness for the hospital and help such an amazing place raise money as well. They said they'd probably contact us again in 2 weeks or so for her to help with another fund raiser and I said that was fine. So, we'll see.

All in all it has been a busy week and NO chemo. This is a new kind of busy for me. One I am a bit anxious about but I think I will grow to enjoy. Thank you all for your support and prayers the past 7 months. We still have 2 years to go, as most of you know, and we will continue to pray for you all as well.

2009-02-01T12:06:00.001-05:00

We have Power...

Like many other families in the Louisville area we were without power from early Wednesday morning until late Saturday afternoon. There are still many, many people without power so I feel fortunate that we have it back so soon. We bunked with my Mom who never lost power while Brent and his Dad ran a generator to keep Kim and Gary's house semi-comfortable. Their power came on last night too so we are all up and running.

In the midst of all this freeze and no power ViviAnne went to clinic yet again Friday. (3 weeks in a row) This time her counts were GREAT! She looks good and has a bit of what is called "the 6MP rash". It is a little reaction from her chemo pill and is worse in the winter months. Moisturizer is the only thing that will help. It comes and goes like the wind and there is nothing to be conscerned about. Phew, another bullet dodged. She did get her Spinal Tap done with chemo into her spine on Friday. The fluid dripped out fine and looked clear. They ran I.V. fluids for about an hour prior to doing the tap to give her a little extra. She has a bad bruise from it now but I think everything is fine.

She woke up from her sedation with her normal loving self. She kept hugging me and told me she loved me and even asked her famous question, "what's your name?" to the recovery nurse. Then all of the sudden when she was more coherent from the sedation she got angry. I mean screaming until red in the face fighting me angry. This can be a side effect of the sedation to make them cranky but this was a whole new level. One I hadn't seen from her since the very begining so I was conscerned. The nurses decided to wait on de-accessing her port until she calmed down. And about 30-45 minutes later it was like the switch flipped again. She and I were sitting on her bed playing finger puppets and she said she'd like to call the nurse to do her port now. So we did and the Debbie came in and de-accessed her port and ViviAnne said "that was fast". So, then we left. She took her signature nap in the car and for another hour there after and we were fine.

Friday was also Cooper's 2nd birthday. I spent the remainder of the afternoon with just the two kids playing and hanging out but we did nothing for Cooper's birthday. No cake, no party, nothing. ViviAnne did tell the nurses it was Cooper's birthday and so someone from Child Life Services brought her 3 mini sport balls in a gift bag to give to Cooper from her. So she did and he loved them and she loved giving him the present, just from Sissy. But other than that his birthday just kinda came and went. He walks around and tells you "I 2!" with delight and so if there was a birthday to overlook, this is the one. We had not planned a party anyway, it was my fault the cake didn't happen and I do feel bad even though I know he has no idea. Next year, right? Happy Birthday, COOP!

Hope everyone is staying warm.

No Spinal Tap Again

2009-01-23T20:11:00.009-05:00

Note from Aunt Stacey:

Kristen asked me yesterday to post the update below. Sorry I just got to it now. Also, Brent and Kristen both are miserable with the Flu today. Not sure if they got it from Coop or not. They shipped the kids off to Nana's for the day to give them a rest and avoid infecting or re-infecting the kids. I spent the day with ViviAnne the other day when Coop was sick and have tons of pics to post. Check back later this weekend to see them:)

Also, fundraising for ViviAnne's treatment has not ended. The PayPal/Chip-In widget to the right of this page is incorrect. I'll work on getting that fixed ASAP.

Written by Mommy

I took ViviAnne to the clinic at the bright and early hour of 8AM to have her counts checked and repeat her spinal tap. If you notice below it did not work properly last week. Well, the doctor there today said that steroids, in her experience, can cause the spinal fluid to dry up some so if her fluid was not wanting to run/drip before steroids and she just ended steroids yesterday then the chances of it running/dripping today were slim. The ultimate decision was mine, but I opted to not even attempt the spinal tap to then have the chance of having to attempt to do it again next week. Three weeks in a row of spinal taps was more than I cared to tackle. So, I said we'll see ya next week. She will continue with her oral meds at home and the steroids are over until next month. She is feeling pretty good and her spirits are up. The steroids have made her belly pooch and her cheecks rosey so she looks healthy and happy. And I think, all in all, she is.

Cooper is feeling better. For those of you who don't know he was throwing up all weekend. He still doesn't have much of an appetite but he is doing tons better. No one else in the house caught what ever it is that he had. We did send a stool sample to the lab to try and figure it out. He ate some recalled peanut butter crackers last week so the possiblity for salmonella, all be it slim, is still there. With no one else in the house sick it makes me wonder.

All in all we are weathering it okay. I would not have said that 2 weeks ago. 2 weeks ago I felt like I had hit this wall and the wall won! But I've been to a therapist provided by the Cancer Research Center and she is great so with her help I am hoping to get back to feeling like a normal, calm Mom again. Time will tell.

Maintenance

2009-01-16T22:08:00.000-05:00

Well we went to the clinic today to begin maintenance. And she did even though her ANC is 850. That is high enough to press on with chemo. She did well. We were able to see Jessi, a young 11 year old boy who was diagnosed within a week of ViviAnne. He is the kindest most gentle boy with her. While other 11 year old boys would not give her a second thought he lets her play on his video games and laughs with her a lot. He is too much. And ViviAnne adores him. So that was her highlight of the week, I'm sure!

After her Vinchristine push at clinic we headed over to the hospital to do her spinal tap. After 3 needles and about 7-8 sticks her spinal fluid would not flow and so Dr. B was not able to perform her chemo or send fluid off to pathology. We are scheduled to back Thursday of next week to try again. I asked, "what does this mean?" and he responded, "Nothing. It is not good or bad it just is." So that eased my mind some. I've been watching her pretty closely to make sure the multiple sticks aren't hurting her tonight. She seems to be okay. A bit dizzy when we left the hospital but after a nap that too passed.

When I went to pick up her MANY prescriptions today with very specific instructions with each drug the young female pharmacist came over to the counter to talk with me. She said that if this was her daughter and she was picking up all these drugs with this detailed of instructions that she would be over whelmed. I had already gone to my Mom's and gone over each prescription and wrote them down in a notebook. I took my notebook out at the pharmacy to double and triple check the drugs. The pharmacists said, "wow, you've got this down." And I responded, "I'd better. It is her life for the next 2 years." She started to tear up. You know it is bad when your pharmacists admitts it is overwhelming. And that is just the tip of the iceberg.

Good News for a Change

2009-01-12T17:10:00.003-05:00

Written by Daddy

ViviAnne’s clinic visit today was very optimistic looking forward. All her counts are up including her platelets and hemoglobin. Her ANC (which controls her body’s ability to fight of infection) has creeped up to around 1050. For reference, 1000 is homebound and 500 is locked down; New Years Day ANC was 16. She is scheduled to have another spinal tap Friday which kicks off the maintenance phase of her treatment.

Maintenance chemotherapy - Chemotherapy given in lower doses to assist in prolonging a remission. This will last 18 months but will typically be monthly visits as opposed to the weekly (2-3 times a week) that we have been currently undergoing.

In February, she will be able to start going to some normal kids functions like mother’s day out, Sunday school, and the YMCA (“Fun” as she used to call it.)

We know that we are nowhere near being out of the woods and that relapse is always looming over us. But for today the news is good and we take celebration in a small victory. Thank you again for all of your considerations and support for our families. Your prayers are working please keep them up.

Quick Update

2009-01-05T15:58:00.000-05:00

I took ViviAnne to the clinic again today. Her platelets have come up some with no need for transfusion, thank goodness, and her ANC came up to 500. SO she is still home bound but she is hopefully on the climb up and will not fall back down again for some time. Her HGM is still only 7.9 and that is with the blood transfusion from Saturday. I was hoping for a big leap because you can tell in her eyes she is just wiped out. But like a little trooper she is up and playing. Because as a 3 year old, that is what she wants to do, PLAY! They checked her urine again today and there is still blood in it but not enough to send off any big alarms. We still don't have the C.T. results back from Saturday to know what is going on with her kidney stones but we should have those soon. We go back to the clinic on Wednesday for another counts check and urine check. Hopefully (fingers crossed) everything will come back up and clear.

She is scheduled to begin Maintenance on the 16th of January as long as all of her counts are high enough. We shall see. A week delay in starting the next phase is not a big deal either. That is the answer I was given today at least. So, we're home and if she a has a good night tonight, the night terrors are back from her over night stay in the hospital, we might go to Gilda's Club for their preschool play tomorrow. We'll see.

Home at Last!

2009-01-03T18:48:00.000-05:00

I took ViviAnne to have her counts checked Friday morning and they were all down. Considerably down. For about 5 days her urine was been VERY dark almost brownish but we had dipped it earlier in the week and it was fine. Well Friday evening I dipped it and it showed blood in her urine. With an ANC of only 400, platelets of 45 and HMG of 7.8 this concerned me. I called the doctor and they said to bring her in to the hospital. After testing her counts had dropped further and the blood in her urine had cleared up to only a trace amount (which is okay) and she was doing okay with all the other blood work (I'll spare you the details of those) and it appeared she has no infection or virus. So they landed on the blood being from her kidney stones. SO they gave her a blood transfusion and did a C.T and let us go home. Which is good because without a hard core answer is was nice to be allowed to go home since she looked good and all preliminary testing looked good.

Her ANC is only 16 now and her platelets are now 35 so she will go back to the clinic on Monday for another transfusion of platelets since she got her blood today. She is resting on the couch and doing okay. We left her port accessed because it took multiple sticks to get it done correctly in the past 24 hours and I couldn't see taking it out to have to put it back in within the next 48 hours. The Doctor agreed. YAY!

As to blood and marrow donations that some of you have inquired about, you can always sign up to do so in her honor but she can not get your blood b/c of the lengthy time it takes to process blood and the fact that we never know when she will need it. This is her 3rd transfusion and could be her last or could not be, no one knows. Also if she has received your blood in the past and she ever did need a bone marrow transplant then you (the blood donor) would no longer be a candidate to donate to her even if you are a match. So you can donate in her honor. I would.

December Pictures

2008-12-26T21:28:00.005-05:00

Photos from Aunt Stacey

Quick Update

2008-12-26T19:30:00.001-05:00

ViviAnne and I went to the hospital today. She got to see a resident she had during her initial visit and who is truly a wonderful lady. So that was a bonus. But that is pretty much where the bonuses end. Now it wasn't as dreadful as that sounds. Counts were down and so she needed a blood transfusion. But they were able to proceed with chemo as planned, so that is good. She will go back to the hospital on Monday to recheck her counts because with this weekend long chemo we are doing at home, her counts should drop more and they are concerned she will need a platelet transfusion. SO we will go Monday to see.

The exact words were, "Well I'm not going to tell you for sure that I think she will cause then she won't nor am I going to say she won't cause then she will. But whatever the case we don't want her bleeding on you." My response was, "Yeah, that would not be good." So we are home and she has a bit of a headache but she is eating and that is good.

Merry Christmas

2008-12-25T04:07:00.001-05:00

It is 2:45 AM on Christmas morning. No my children did not wake me up this early, well sorta. ViviAnne woke me up for a drink and I can't fall back to sleep. We had a wonderful Christmas Eve with Brent's family. It was just the immediate family so there was not all the chaos of cousins and such but it was exactly what we needed this year. Both the kids have been on a Christmas high all week with gifts arriving daily since Sunday's visit with PeePaw (my Dad). And it has been wonderful to watch their excitement and joy over the presents and celebrating the coming of our Lord. Every night I ask ViviAnne why we really celebrate Christmas and give presents and she responds with "Because it is Jesus' birthday. And because we love him." It warms my heart to know that she is beginning to learn and understand the true meaning of Christmas.

She has felt wonderful all week! And knowing what I know about her treatments I'm in amazement as to how?!? But she has been on this toddler Christmas high and it is wonderful and a bit exhausting at the same time!

So, in these wee hours of the morning I felt compelled to tell you all that she is feeling great and Brent and I are both feeling blessed and relieved that our Christmas is turning out the way that it did, not in the hospital or with her in the bed.

During my night prayers I was so thankful and grateful to God for her health and Cooper's health and all though they have different levels of healthy I am thankful. I just kept telling God thank you, thank you, thank you. Thank you for Jesus so we may know you and thank you for my wonderful family and thank you for Mary. Now, this last thank you just kinda popped out and so it gave me pause. "Thank you for Mary?" I thought. I am not a Christian who focuses a lot of attention on Jesus' Mom nor do I put faith into her being able to answers prayers so where did this come from. But I went with it and really it is true. How wonderful of a role model for me as a Mom. To have your soul break for you child and be frightened for their life. I know she had faith that far surpasses my own but she was also a Mom. And so I wonder when Jesus was born, born to die, did she hold him tightly in the night while he slept and ask to take His place? Knowing the pray was futile but praying it the same. I think she did. Because that is what I do at night. Knowing God will not give me her Cancer but I pray it anyway. Oh how I long to take her place. Take it all away. Mary HAD to feel the same way, she just had to. So yeah, thank you Mary for being a wonderful role model.

MERRY CHRISTMAS!

Delayed Intensification Moves On

2008-12-21T13:18:00.000-05:00

Friday Mom and I took ViviAnne to begin the remainder of her D.I phase. Her counts were up (YAY!) and so we headed over to Kosair's for a 2 hour saline drip then a spinal tap with chemo push (Methotrexate) another IV push (Ara-C) then Cytoxin drip for about 45 minutes then 3 hours over more saline and an oral pill 6TG. All in all we didn't leave the hospital until 9PM at night. A LONG DAY considering we checked in at the clinic at 9:50AM. ViviAnne did okay. There were new faces this day for sedation and a wonderful nurse who she only had once before. ViviAnne does not handle change or new people well. It makes her scared and then she fights back. Which she does not do at all when she knows the people, even though the chemo is coming. SO I had to work extra hard at getting her to do the little things and keeping her calm. After the LP and a lot of the "busy" chemo was over she settled in and was fine. Things just didn't run as smoothly as the have in the past. She has 4-5 little hole marks on her back from the Spinal tap, almost like they couldn't quite get it. The fluid was clear to the eye, which is good, the doctor just commented that it was running very slowly. Apparently that is more of a nuisance than anything but in the end it was fine. I had ViviAnne remain flat for 45 minutes to an hour afterwards just for safe measure. The spinals can cause horrible headaches and if one gets up too quickly the chances of headaches increases.

Friday was also Christmas in the hospital for ViviAnne. Two sets of groups brought her in games and coloring books and toys. She was lovin' it! No wonder she never minds going to the hospital. She has figured out she always leaves with a new toy of some kind! Whatever works to make her not afraid I'm all for!

She is home accessed with her port now, something new for her and took a bit to get her to understand. Like I said any change in the routine or something new sends her spinning. But she is okay with it now and we are keeping she and Cooper seperated as much as possible so the port does not get damaged and ultimately hurt her. Mom (who is a Nurse) is giving her the daily chemo at home because I didn't want ViviAnne to have to get used to a new home nurse and neither did Mom. ViviAnne also started a new oral pill at home 6TG. So if you've kept up with the count that was 4 differnt chemos Friday and then 2 everyday since and then 1 after Monday. Then it is back to Kosairs the day after Christmas to repeat last Friday, minus the Spinal Tap. PHEW!

With all of this she is doing wonderfully. Her spirits are up and she is excited about Christmas! She tells everyone that she wants Santa to bring her a pink guitar. HO HO HO!!! ;)

We are looking forward to the end of the year and moving on to Maintence in 2009! This phase will be the marathon phase of 2 years. We will figure out our new new normal then. But as of today the sun is out and she is happy and I am anxoius (as usual) Cooper is silly and Brent is busy (as usual). So today is a good day. Hopefully tomorrow will be too.

Beautiful Girl

2008-12-16T15:23:00.002-05:00

Chemo Delayed

2008-12-12T19:46:00.001-05:00

Written by Mommy

My Mom and I took ViviAnne to the clinic today to begin her second round of Delayed Intensification. Well, she didn't. Her ANC was only 540 and it had to be at least 750 to proceed with her Chemo. So she has to wait a week and be rechecked to see if counts are up. If they are then she will proceed if not then we will wait again. What does all this mean? Two weeks with no chemo as of now? No one knows. Could be absolutely nothing in the big scheme of things or could mean something. No one knows now and will never really know. It is not uncommon for this to happen but I've never read or heard anything about what delaying means for the long haul, because I don't think they know. "One day at a time" is really rearing its head again.

ViviAnne is doing well...

2008-12-10T14:44:00.003-05:00

Written by Mommy

Sunday ViviAnne perked up. She has been VERY talkative all week and is giggling and the mood swings are not too terrible as of today. The come off of steroids is almost as bad as when she is on them. She had more hunger with this round of steroids than the last and Monday I pulled the plug on only letting her eat chicken fingers and salads. That is all she wanted this steroid round and I learned early on to not fight the cravings just allow her to eat it because it won't last forever. So now she eats normally just more than she normally eats. (Did ya follow that?)

But it has been nice having her smile again and giggle and do silly things just to ask me, "Do you think this is funny, Mom?" She is like her Daddy in that way. Do something funny to make others laugh and smile and to be the center of the attention. They both always make me smile. We've been making cookies everyday to keep busy in doors. Even though her counts were up on Friday I am not taking any chances. We've got 3 weeks left of heavy chemo and we are doing everything within our powers to keep her healthy and even seeking the higher power with prayer on the matter as well.

She is okay with being bald now. It took her a couple of days to get there. She kept telling me that she and I don't match any more. And saying she wanted me to cut my hair. It was hard watching her try to put it all together. She'd walk into a room and say, "What do ya think about my hair?" with a smile on her face of course. And we would smile and say how beautiful she is. We explained hair is merely an accessory. And actually she does look great! Her complexion and shape of her head look angelic! She is our little Christmas angel!

Cooper had some issues with her going bald as well. He walked over to the trash can on Friday night and tried to pick her hair up and he said, "Nooooo, SISSY'S! No No Sissy's!" And then walked over to her and hugged her. It was everything I could do not to cry. But that was really it with him. She is still Sissy to him no matter what, he doesn't even give her bald head a second glance. You can tell he is glad to have her a little back to normal and not just laying on the couch and telling him, NO.

Friday all of this goodness is going to be taken away from us again. So I have been trying my best to cherish every moment this week. Knowing it won't last but loving it while it does.

PawPaw Takes One for the Team.

2008-12-05T00:05:00.003-05:00

Posted by Daddy:
As Kristen mentioned in a day or two ViviAnne's hair may be completely gone. Kristen has cut her hair short again to minimize the trauma of losing it (if at all possible). Pawpaw stopped by the Barbershop on the way home from work today to show her it's no big deal.

The sight freaked her and Cooper out at first. But they eventually warmed up to his new do (or lack there of). ViviAnne has for the most part only really noticed the little girls at the clinic/hospital whose hair has fallen out. Her little mind couldn't figure it out and she always assumed these little bald kids were boys. We always carefully explained in those instances that these were pretty little girls too and that their medicine just made their hair fall out. And that it was okay because it would grow back when they weren't sick anymore.

Within 15-20 minutes tonight, she got it (kind of). She was reassuring everyone, "It's still PawPaw, he just has little girl hair now."

Later tonight, she woke up crying. Referring to something about little babies she must have been dreaming about and how she hated her hair. This is obviously only a temporary yet very emotional visual manifestation of what is going on inside her poor little body. Once again there is nothing that I can say or do to make it better or fix it. We just have to go on like it's no big deal.

2008-12-03T21:36:00.002-05:00

Written by Mommy

Tuesday night I was giving ViviAnne her bath and I noticed immediately upon washing her hair that it was falling out badly! She has been in a constant state of shedding since the beginning of chemo but not handfuls worth since induction. As I mentioned her new growth was sticking straight up through her thinning her. Well all day today her hair fell out by the handful!! She has been scratching her neck from all the tickling and tonight during bath I thought "if I sit here and keep washing it is just going to all come out in my hands."

I couldn't believe how much hair was coming out and she never even flinched. I asked her if she was sad about it falling out and she said no that she was scared. She would look at her hair lying on my lap after she would lay on me and just stare at her blonde hair on my legs against my black pants. You could tell her little 3 year old brain was trying to put it all together. I explained it would grow back and it is okay and she is beautiful and like many other little girls at the clinic she will be just as wonderful too. It broke my heart to have such a converstaion with my daughter. She is such a girly girl and I don't want her to be scared. Brent asked me how I was doing with it. I responded with, "I have no choice. I have to be fine so that she is fine." And so that is how I am with a lot of this, just fine.

She was real quiet all day today, weak acting and sounding is what it was. She has been very weak and close by me all week. You can tell she just doesn't feel well. Around 5ish she perked up today. She gets about two bursts of energy a day. They usually last about an hour or so. One around 10ish and then one around 5ish. Sleep follows not too long after the bursts. She sleeps in 2-3 hour spurts this week and last. Very restless and whimpers most of the night. I do what I can to soothe her all though it is not enough. Talk about helpless. Maybe that describes how I really feel; fine and helpless. This, like all things, is not in my hands; it is in God's and all we can do is pray.

Update from Mommy

2008-12-01T15:10:00.000-05:00

Written by Mommy

I took ViviAnne to the clinic today. She was very pale and nauseated all weekend and I just was concerned. SO this morning we went in. Her ANC count did come up to 500 over the weekend and hopefully with the help of the steroids she is on they will continue to climb. She is still home bound and at a great risk of infection at 500 but atleast she is going up. She will be rechecked this Friday and then if all is well she will start the second round of Delayed Intinsification on the 12th. Her hair falls out all day long but she still has a bunch left and the new growth from where it fell out the first time is sticking straight up through her hair. So she might not lose it all. She is very irritable and combative still and as long as she can make it through to the end of the year 2009 will start a less intense phase and she should be good to go

Rough Patch

2008-11-30T18:41:00.002-05:00

Written by Aunt Stacey

Just a quick update. ViviAnne is going through a rough patch right now. Treatment did not go very well on Friday and her ANC is down to zero, which means it is nearly impossible for her body to fend off infections. Brent and Kristen are on lock down, keeping her at home and not allowing any visitors. Just wanted to give a quick update, Kristen can write more later if or when she has the time or desire.

Below is more info on Neutropenia.

ANC stands for Absolute Neutrophil Count and refers to the total number of neutrophil granulocytes present in the blood.

Neutrophils serve as the major defense of the body against acute bacterial and certain fungal infections. Neutrophils usually constitute about 45 to 75% of all white blood cells in the bloodstream. When the neutrophil count falls below 1,000 cells per microliter of blood, the risk of infection increases somewhat; when it falls below 500 cells per microliter, the risk of infection increases greatly. Without the key defense provided by neutrophils, people have problems controlling infections and are at risk of serious complications.

Update from Mommy

2008-11-25T17:45:00.004-05:00

ViviAnne is in her second week of Delayed Intensification phase. She will receive another round of DOX and Vinchristine this Friday at OMO because the clinic is closed for Thanksgiving. She was really out of sorts yesterday. She was combative and very agitated. Of course during the middle of it I was losing my patience thinking, "What is with her today." That is one of the many difficulties with her being so young and not being able to express how she is really feeling. And usually it is after the fact that I catch on. Which is filling me with guilt for not picking up on things as quickly as I think I should. Today she is just tired acting. Quiet at times and siting a lot too. Hopefully she is okay and just having a rough couple of days, I'd hate for something bad to come knock her down and put her in the hospital. That being said, we have home bound ourselves since the start of this phase because of all the people out and about this time of year and the flu and strep throat and....I could go on and on. The kids and I are already getting a bit stir crazy but that to shall pass. Hope everyone has a Happy Thanksgiving!

She Pooped!

2008-11-19T19:45:00.000-05:00

Written by Mommy

She did it!! They decided to not admit her today but went ahead with the PEG chemo anyway and then went up in strength for an at home laxative which she will remain on for at least a week to make sure she is good and going. And well that with the Miralax AND the Senna (stool softener) she finally went tonight!!! YAY!!

She tolerated the PEG okay but refuses to walk b/c both of her legs are so sore and she has been wimpering ever since they were given to her today at 1:30. Hopefully tomorrow she will feel better. And then on Friday it is back for more chemo and the Kool-Aid chemo (DOX). Which is dreadful stuff. It is all dreadful but something about putting something red into your body that isn't blood is just wrong.

Anyway, she is still tired and cranky and thankfully we only have 2 more doses of steroids b/c they made her VERY moody this time around. As if 3 years olds weren't moody enough without chemo. ;)

High ho, High ho it is off to chemo world I go!!

Chemo Update

2008-11-17T16:13:00.001-05:00

Written by Mommy

ViviAnne began the dreaded Delayed Intensification last Thursday. She handled it all wonderfully but has been very tired ever since. Sleeping more and just telling me she is tired, plus her color is pale and her eyes look weak. But she is not throwing up so that is good. The steroids are making her moods swing considerably but she is not hungry this time. We went today for another form of chemo, PEG, but it is delayed and so is her treatment for this Thursday due to constipation. When we went to clinic today we were concerned that she has been constipated for a week and the chemo will only make it worse so we are holding it off until she poops. She has 24 hours to poop with the assistance of the 3 different kind of laxatives and stool softeners we've BEEN using at home and if that doesn't work then the will have to admit her to the hospital to physically remove the stool. So we are waiting on poop, AGAIN! It obviously would be better if she could go at home. So that is what is new with us. Just another day in chemo world.

One thing Cancer has taught me...

2008-11-13T21:13:00.004-05:00

Written by Mommy

A woman I’ve met through Chemo Moms told me she has a letter that says, “Dear Cancer, thank you for….”and she has a list of things it has taught her along the way. Now, I personally have not started one of these letters all though I know I should. There are many things I need to take time and do but I’m not always in the right frame of mind to be positive and uplifting towards myself or others. But I will tell you this. I have learned through our Cancer journey to not be so cynical towards people because the capacity at which God has created us to love is astounding!! There is not one single day that someone does not somehow convey to us that we are still in there thoughts and prayers and the amount of love poured out to ViviAnne and all of us is amazing! So I plan to pay it back, pay it forward and even pay it sideways each and every chance I get!

I’ve always been one to stand back and not approach people. I have always thought that I didn’t have anything worth saying nonetheless worth listening to. But no more! Sometimes it is just a kind word from a stranger that brightens a day. Take for example ViviAnne’s new Chemo Angel. It is this woman who lives in Washington, her name is Jessica. And she has 3 little girls and is planning on taking time out of her week to send a little something to ViviAnne for the next18 months while she is in treatment. It is a volunteer program and people across the country sign up and support complete strangers going through chemo just to let them know someone is still with them even if it is not physically. HOW AMAZING IS THIS?!?!?!?! I encourage everyone to check this out, even if it is just to be blown away by the love out there. ..

http://www.chemoangels.net

It is so easy in today’s world to forget people love and care about others. When the world seems wrong, which it often does now in the face of cancer, God really is working through people and my heart over whelms at the love we get. Some days, like yesterday, it is the only thing that keeps me going I think. So thank you again. And hopefully some of this will touch others of you out there. Cancer has changed me, good and bad, I just remain prayerful that along with ViviAnne’s health will come good out of all of this. Because honestly the days are getting bleak and the love of God and others is the only thing we have to lean on right now. Thank you!

Halloween (long overdue)

2008-11-06T13:41:00.003-05:00

Written by Kristen

Well, we did it. We let the kids go trick or treating in our neighborhood this year. ViviAnne (the little Princess) and Cooper (little Frankenstein) went to about 6-7 houses and did their routine. Tick or treat and thank you. That is all that was said by both of them at each house. No conversation just strictly business. Then we went back to our house where my Mom had been manning the candy for the other kids in the neighborhood. We joined her on the front steps and both kids passed out candy to the rest of the neighborhood kids and enjoyed a sucker or two of their own. The adults, Brent, Mom and myself, nibbled on candy and laughed at all the teenagers and little ones prowling for candy. Then it was inside for jammies, “Spookley the Square Pumpkin” movie and White Chicken Chili. It was a lot of fun and both ViviAnne and Cooper finally figured out what all the fuss over Halloween was about. It was nice to have a day focused strictly on kids stuff and not on chemo or cancer.

NoogieFest

2008-10-30T19:22:00.000-04:00

Noogie Fest

Written by Kristen

This past Saturday we took ViviAnne to Gilda’s Club Fall Festival, Noogie Fest. There were tons of activities and an animal show for the kids. It was a wonderful opportunity for ViviAnne to play with other Cancer warriors and survivors and for us parents to get to talk with one another about fears, questions, hear positive stories and just have a great cancer family day!

ViviAnne had a blast! She wanted so badly to jump in the big blow up bouncers outside, and did muster the courage when there were not big kids in there and Daddy would sit in the contraption and hold her hands for her to bounce. She would giggle and squeal. (both with fear and delight) She enjoyed the mask making and made some green slime and even had her caricature made! There was also a safari animal show with snakes and frogs and birds. She sat there next to one of the sweetest girls ever, one of Deborah’s triplets, and watched as this crazy man pulled one animal after another from bags. Every time he would ask for a volunteer little hands would shoot up around the room and there our little ViviAnne sat, wanting to be brave and a big kid and you would see her look around at all the kids with their hands waving excitedly in the air and her little arm would creep up only to hold her hand right next to her head. As to say, “yeah I’m big and not scared” but really she was and I am so glad that man didn’t get any quirky ideas and call on her because the outcome would have been bad. Thankfully he didn’t and ViviAnne sat there and watched all the other “brave” volunteers touch the snakes and birds and even a skunk! It was really a great thing for her to get to do.

I find myself constantly fighting the battle between treating her “normal” and treating her like she is sick. It is so hard to tell sometimes what is real and actual stomach or knee complaints and what is repeating previous experiences. She relives her traumas a lot!! So this weekend to see her get to play and do normal kid things was great. I was aloud to not have that battle within myself and let her be “normal” all the while talking about how hard this is with the other parents. I just hope over the course of the next two years that I never let her see in my eyes that she isn’t normal, because she is only with a little extra crappy stuff. I never want her to see my fear of all of this, not until I have a better handle on it myself because right now it is an uncontrolled fear one that could scare a grown up if I unleashed it so it would frighten the heeby jeebiez out of her!

We met other parents whose children are either out of treatment and/ or in the same place of treatment as us. We exchanged numbers and emails in hopes of being able to meet up again and vent and/or cry about this horror we now live. Parents who get it! Mom’s and Dad’s who like any Mom and Dad are trying to do the best they can for their child only we all feel as though the hand we’ve been dealt now has higher stakes than before, higher stakes with worse odds. So I find myself almost being clingy to these Moms when I get the chance to see one, just so I know I’m not crazy or over reacting. Which I’m finding out I’m not but a little reassurance is always nice!

ViviAnne is continuing along nicely in treatment. Her counts have maintained pretty well. Her platelets are a tad high but not too high to do anything about. She still carries around a kidney stone but nothing too bad, and she has a random vomit here and there but nothing to get worked up over. At least that is how I feel as though I have to look at it. She truly is amazing how she takes it all in stride and just moves on. We’ve heard a lot of stories of how awesome Cancer kids turn out to be as adults. The compassion and empathy they have for people is amazing! These are traits we were trying to instill in our children pre-cancer SO hopefully I too will have a story like that for ViviAnne. Hopefully I will get to be one of the veteran Mom’s whose cancer survivor becomes a doctor or nurse or social worker or minister. Someone who gives back to this world!! These are the things I try and tell myself so that I do not dwell on her prognosis and the “what ifs” and the horror of all that could go wrong and/or IS going wrong. We try to stay positive. Some days we are more successful than others. And then there are some days when it is minute by minute. So if you talk to me and I’m up then I’m up. And if you call and I don’t call back, well it is because I’m down and I can’t muster the words or the energy. So everyone out there who gets annoyed with my voice mail, please know I am thankful for your calls I just can’t seem to get the energy to talk sometimes. It isn’t personal; it is just where I am right now.

Information

2008-10-28T21:22:00.005-04:00

Written by Kristen

Please take a moment to read this article from Cure magazine if you have a chance.

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/142

...and look at these statistics:

· Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

· One in every 330 children will develop cancer before the age of 19.

· The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

· Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.

· One out of every five children diagnosed with cancer dies.

· Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.

· Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.

· Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.

· Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).

· Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

· The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

· Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives.

· On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

· On the average, one in every four elementary schools has a child with cancer.

· On the average, every high school in America has two students who are a current or former cancer patient.

· In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.

· While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

· Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.

· Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

** This is copied from a fellow cancer warriors Caring Bridge page. now you all can see what keeps us parents awake at night! Thanks, Deborah for the info.

Kosair Video featuring ViviAnne

2008-10-19T15:21:00.002-04:00

Written by Daddy

Over a year ago, I filled in for our business/marketing manager at a GLI event; not 100% sure what I was getting into. The event was a nice lunch and quickly turned into one of those 5 minute marketing things. Like speed dating for marketers. You trade two minute commercials and contact information with the person across from you. Someone rings a bell and they are gone and another person sits down and you go again. If I had known this, I would not have gone. Anyway, the bell rang and a vibrant lady sat down who seemed to have this down pat. She did her thing, I did mine, the bell rang, we shook hands and she went on her way.

Fast forward to mid July this year and we meet again in the corridor of 7West. She has a little boy who is now 8 and was diagnosed with ALL about a week or so prior to ViviAnne. We have since ran into each other about a dozens times in treatment, at the hospital or at events like Light the Night. We try to keep up with each other’s progress and make sure each others little ones are still doing okay. Her son’s name is Noah and he just got released recently from a week long stay in the hospital. Please keep Noah and his family in your thoughts and prayers. They had a rough week.

Noah’s mom sent me a link to this video recently. It brought back a lot of bad feelings and emotions I had a few months ago. But it also brought back one of the emotional moments Kristen and I had the first night we spent at 7West. We agreed that we would never say this isn’t fair and that she doesn’t deserve this. Because no child deserves this yet there were dozens asleep on that 7West that night and tonight who were dealt this hand. I don’t know how well we have kept with that but this video reminded me of our attempt. After much discussion between Kristen and I and a couple of weeks of letting our original emotions surrounding this video subside we want to share it with you all.

http://norton.cachefly.net/JFK_CHF/support_chf.html

D-Day

2008-10-15T13:10:00.007-04:00

Written by Daddy

Sunday October 12th 2008; Kristen was sick and needed a well deserved day of rest. I knew my mission. I had to get the kids fed and dressed and out the door, not to mention the same task for Brad, Stacey and Andy. The latter was more of a daunting and time consuming task for me. I kid.

Reconnaissance Mission One was to observe miniature aircraft activity over Tom Sawyer Park. There is a little airstrip (by little I mean a driveway) off of Hurstbourne Lane where old Navy Has-beens and remote control wanna-be pilots gather to play with their middle aged toys. These guys took this very serious; they each had clearly invested a lot of time and money in this pastime. When we arrived half a dozen were already on the ground going through their pre-flight inspections. And then one by one they’d taxi on to the tarmac and take flight. Cooper about locked up and Andy wet himself a little in all the excitement. ViviAnne of course only cared about the pink plane. It takes a big man to show up in this arena with a pink plane, but even a bigger man to laugh at him when it crashes into the tree line. Unfortunately, Vivianne’s favorite plane was last seen being loaded into the back of an SUV in several pieces. It was no secret that this little excursion was focused more on the three adult men in our squadron. But the kids loved it as well. They were perfect angels patiently waiting the next flight.

Our next mission was clear, so we loaded up the team and headed to HobbytownUSA. The rules were clear and even more clearly ignored. NO TOUCHING! Upon entering the door Cooper somehow managed to run in three directions muttering, “I Get!, I Get!, I Get!” ViviAnne fixated on a pair of toy binoculars or “Schelesopes”. We managed to escape significant collateral damage and left the store. Andy bought a small Styrofoam RC Plane that boasts a wing span of about 5 inches. ViviAnne dubbed this piece of aeronautic engineering “Andy’s Cute Plane”. Daddy prefers to go down in flames and splurged on a more man sized aircraft. The kids didn’t seem to mind that these where crackerjack trinkets compared to what we had witnessed earlier.

Back at Gramma and PawPaw’s, “Andy’s Cute Plane” saw about 60 seconds of airtime before a slight breeze hurled it into the top of a tree; the very top. Under the careful supervision and direction of ViviAnne, a spool of fishing line, a lead weight, 60 feet of rope and 1.5 hours, later we managed to dislodge the flying BigMac container from the tree with minimal carnage.
“The Man Plane” took a painstaking 3 hours to charge. After a 3 minute preflight video on CDROM, ViviAnne, Andy and I were experts. Stacey gave ViviAnne another controller so she could pretend to be at the stick. The maiden voyage included 10 feet of ascent, 20 yards of travel and a mid-air collision with the nearest tree branch. After carefully surveying the damaged wing and loss of landing gear, the executive decision was made to push our luck and return to the air. The next flight was a little more successful with a fly-by over the house before we lost sight and contact. Our new found hobby had quickly become a rogue unmanned missile and no cow or horse in a quarter mile range was safe.

Andy and I took to the great wild of Oldham County to recover the wreckage. We climbed barbed wire fences and dredged through the thorns of undergrowth of adjacent properties to rescue our fallen comrade. With the sun and our hope of “not leaving a man behind” setting we started to head back toward Gramma’s feeling defeated. We’d all but given up when we heard the whine of a 9-volt engine crying out for help. We actually had to go back, get the car and drive to where heard the sound. With our pride and a large remote control in our hands we knocked on a farm house door. Luckily no one answered and we scampered around the house to find our plane in one piece and hurried back to headquarters.

My little fighter pilots were exhausted by this point but glad to see that we had survived to fly another day. We returned home and debriefed Mommy on our mission accomplished. The perfect Daddy Day; no work, no chemo, no boo-boos, and no structure, we literally went were ever the wind took us. It was a great day that I will never forget.

PawPaw's Post

2008-10-12T13:59:00.007-04:00

Written by PawPaw (Brent's Dad)

As the father of a handicapped child I always wondered “why us” , why not let this child have a normal life, why did God do this. Kim (grandma) is a saint, she has taken on the situation for 30 years with patience and love where I was less understanding of the situation and question God’s reasons for this, I was mad at the world instead of coping with the situation like Kim. When we were told of this situation of our first child by the doctors it was like someone hitting you in the chest with a sledge hammer then you pick yourself up and try and deal with it the best you can, not knowing for sure what is the best way, but you try and do what you think is right. It’s a lonely feeling sometimes like your on your own and only the support of your family and friends help you get through it.

So here we are, 30 years later, life is good, your kids have grown up, graduated college, got married, bought houses, had children, etc. Life is good. Then you find out your little granddaughter has the dreaded word “cancer”. Here comes that sledge hammer again, right in the chest, life seems numb, it’s hard to work, it’s hard to sleep, sometimes it hard to not shed tears. And then it comes to my mind again “why us”, why make this poor little thing go through this, why do this to these parents. Maybe some day if I am lucky me and God will be able to sit down and have this discussion.

When Kim told me of the Leukemia walk we did last Saturday I did not think it was a big deal, we are going to go down to the river front, get in line with a few people and take a one mile walk. What I experienced was totally different than expected. I saw a thousand, maybe two thousand or so people, carrying red and white balloons with lights inside them. People were wearing different kinds of personalized t-shirts to support their sick friends or family member, or the heart breaking t-shirts that read “in memory of.” But then there were the encouraging blue and white t-shirts that said “survivor."To be able to talk to these people and share their experiences and concern for your loved one, it was awesome.

We will still have the sleepless nights, the challenge to concentrate at work not on ViviAnne’s illness, the worrying about the parents and kids. But I see the goodness and support of family and friends, friends of friends, even strangers, the determination of the doctors at Kosair, the determination of Brent and Kristen and the support of the Leukemia foundation. I see all this and I say to myself, we will succeed in this quest and one day we will be with VivivAnne down on the river front, walking that mile with her blue and white t-shirt that says “SURVIVOR”.

Light the Night

2008-10-07T16:12:00.020-04:00

Written by Mommy

This past Saturday we went to the Riverfront to take part in the Leukemia Lymphoma Society’s Light the Night Walk. It was only a one mile walk where supporters carried red balloons with lights and survivors/warriors carried white balloons. We went down early with my mom and brother to hang out and enjoy the evening of fun. ViviAnne and Cooper both enjoyed bouncing and sliding in the blow up things and ViviAnne had a butterfly painted onto her cheek, pink of course, and loved looking at all the kids running around and playing. She even tried to join in with some older kids running in the yard but they had pooped out by the time she mustered up the courage to run too. She was so happy and excited by all of the people and music and even the ducks swimming down the Ohio River were fun for her and Cooper! They were both a joy to watch and it was a truly touching night.

Nearly $400,000+ was raised that evening for cancer patients of all ages and we signed a petition to get Congress to support research in the Leukemia and Lymphoma areas. (They currently only give money to 4 cancer research trials and they are not in the blood and bone areas.) It was moving to see all the other survivors and warriors and all the people out to support a disease that is so devastating.

ViviAnne of course did not understand why we were walking, she just enjoyed the walk and the balloons and our matching t-shirts that have her picture on the back. She thought that was the coolest! On Monday I put a plain grey t-shirt on Cooper and she said “hey, where’s me?” like he can only wear t-shirts with her face on them. She was dishing out the hugs and kisses to all of our supporters and talking up a storm, she loves to be in the spotlight! Thanks to everyone who came out to support her and gave up just a little bit of your Saturday night for our baby, I was so happy and felt so loved to see you all there!!

On Sunday her cousins Abigail and Madison came over to play. ViviAnne squealed and bossed people around and played very hard the entire time they were here. She just thinks she is such a big girl that a 6 year must want to play with her and do it her way because she has the BEST ideas! (At least that is how ViviAnne would describe the situation.) ViviAnne LOVES babies and her entire life has never thought she was one. Even when she was only 15 months old and BABY was a favorite word she thought she was a big girl and they were the babies! It is kinda funny to watch her interact with girls about 5-6 years old because that is about what age she thinks she is. She played with Abigail as if she is on her level and then Sunday night she crashed.

She slept 13 hours that night and woke up sick on Monday morning. The vomiting was controlled by the Zofran but even with a pukey Monday morning the weekend and the two weeks leading up to this one have been GREAT!!! She was playing well and smiling often. I hope today isn’t her descent down the other side of the mountain but just a fluke!

Joint Post from Mommy and Aunt Stacey

2008-09-30T17:57:00.009-04:00

Mommy wrote...
It has been another great couple of days. These past couple of weeks have been so good that looking back on the weeks prior to them I can really tell ViviAnne wasn’t feeling as well as I’d thought. But there was never any signs until the vomiting started.

Anyway, enough about that…..Like I said she has been doing remarkably well the past few weeks. So well that yesterday I took she and Cooper along with Gramma to the Newport Aquarium to visit Aunt Stacey. It was a wonderfully full day with no tears or fits. She simply took it all in with wonderment and curiosity. It was great! And as an extra bonus there were only 2-3 other families visiting that day so we pretty much had the place to ourselves. Which was great; if it had been crowded she could not have gone!

She and Cooper enjoyed looking at all the colorful fish and were a little unsure of walking through the glass tunnels and/or over the glass platforms. ViviAnne was a bit startled when a BIG shark swam over our heads but all she did was hold tighter to my hand, no tears or anything. Cooper was quite funny with the glass bridges, he would stop dead in his tracks and baby step around the glass if he could. Aunt Stacey led both of them over one glass platform and he kinda shimmied across until it was close to the end then he ran. It was so funny. I love to watch the things they are afraid of because you can see the “what is that?!” look in their eyes. As we age, we definitely take for granted knowing what everything is around us, and forget that these little people are taking in the world for the first time ever! It was really something!!!

A quick note from Aunt Stacey...

Kristen did not have time to finish this post before ViviAnne had woken up and was calling out for her. She asked me to wrap the post up for her...

ViviAnne is doing amazing! I cannot tell you how full my heart is after spending the day with her and seeing her enjoying life like every child should be able to do. Just weeks ago she was so weak and her body so taxed by Chemo that she couldn't even sit up for very long by herself. I can remember one day we were absolutely ecstatic when she wanted to get down from the couch and lay on my back. She was too weak to stand and play so she laid on my back while I was on the floor and we pretended to be alligators and other animals. Just her wanting to play was a big deal to us. Fast forward to yesterday where she was literally tearing through the Aquarium, running from window to window too see all the different species, enthusiastically yelling out to all of us to come see. Watching her and Coop interacting is so heart warming. They just love each other so much and play together so well. When she was going through that horrible first phase of Chemo and steroids, she refused to let Coop anywhere near her. To see her back to loving on him and mothering him is such a good indicator of how she feels.

My mother-in-law, Doris (or DOWIS as ViviAnne says) is in town visiting and came along yesterday. She bought the kids some stuffed animals from the aquarium and they LOVED them. Coop even tried to ride his for some reason. They had a blast running around the plaza with them. They really liked the telescope (or SKELESCOPE as ViviAnne says) that they could look through to see the boats on the river or the buildings downtown. I'd be holding up ViviAnne so she could see through it and look down to find Coop had completely scaled half of the telescope base.

Doris went on and on about how well behaved the kids are. I think that says a lot about Brent and Kristen. Even through the stress of this horrible ordeal they have not lost focus on still teaching ViviAnne and Cooper how to be well behaved, sweet and polite children. I know they are still trying to figure out what their new "normal' is, and though things are going well now, they still have a long road ahead of them, but I am so proud how they have continued to be such amazing parents through the stress of it all.

I go home after days like yesterday and just feel so grateful and appreciative to have days like that. If anything, the last few months have taught me to thankful for ANY good days. Until Andy and I have our own babies, ViviAnne and Cooper are the most special people in our life. I am so proud and thankful for these ridiculously adorable bright blue eyed, blonde-headed little people. And even prouder of their parents.

A Great Week!

2008-09-26T15:46:00.003-04:00

Written by Mommy

This week has been exceptionally good!! She has been in good spirits all week and appears to be a normal active 3 year old with thinning hair . She and Cooper have played well together all week and even though she is tired and poops out rather quickly around lunch time she is still happy and a joy to be with.

We went to the Urologist yesterday to check on her stones. No news of moving or improvement. After an X-Ray and an ultrasound they appear to be located in the same place. Next week she will go for another CAT scan to determine where they are next week and give the doctors a better idea of how to proceed. They are going to run blood work to see if the stones are by chance not caused by the chemo but rather the pituitary glands being over active (or under active I don't remember which) and possibly spilling too much calcium into her system creating the stones. She followed this up with "But this is very unlikely. It is like looking for a zebra on a horse farm." And I said "Oh, if you only knew how many times we've been told THAT over the past few months. Now I feel like that is just a red flag for yep this is what it is." But anyway I don't know which one is supposed to be worse. Side effect from chemo OR caused by the pituitary glands? ViviAnne LOVED the ultrasound. She just lied there and stared at the screen like "What is this weird movie?" And of course the Nurse Practitioner went on and on at how cute she is. I tend to agree. Her cheeks are chubby from this round of steroids and they are too cute!!

Just wanted everyone to know we are proceeding along nicely this week. She woke me up 2-3 times a night this week so I never had the chance to fear the worse. I saw her every couple of hours!!

Thank you all for all your love and prayers. It has been truly amazing and is really a big help in keeping our spirits up. We are praying for each of you as well. Last night during bed time prayers ViviAnne said "and thank you for no boo boos and thank you for everybody...." it was really sweet. (And if you know how she actually says 'everybody' you know how sweet this is for sure.)

Chemo Update

2008-09-21T23:33:00.002-04:00

Written by Mommy

It has been awhile since we have updated on what she is doing treatment wise. She began her new round of chemo last week. She received her Vinchristine through her port and is continuing to take the 6MP pill at home. She was placed on steroids, only for 5 days thankfully, and is now taking Methotrexate at home in the form of a pill. The spinal tap will only be once this month instead of once a week. YAY! As Stacey mentioned she does have kidney stones and we are watching them to determine how they should be handled. They do cause her pain when they move and I don’t believe she has passed one yet. They have her on some meds to try and ease with the passing of the stones, no pain meds but something to try and make it easier.

To be completely honest with you, giving her chemo on a daily basis is starting to get to me. I keep thinking and telling myself, “This is to make her better. Yes they make her feel like crap but it is for the best in the long run.” But still I used to think of chemo as this thing Doctors did; not something I would ever be giving to someone, especially my own daughter. It kind of messes with your head and serves as a daily reminder that yes, she is sick and in the fight of her life, literally.

Everyone asks “how is she?” and I usually respond with “She is doing fine.” And well, I am not so sure that is the case. She is sleepier than a normal 3 year old. She has her moments of panic when I don’t know what is wrong with her and she has her normal playful moments as well. All along I’ve thought “she is breezing right through this we are so lucky!” but now with the kidney stones being caused by the chemo I am having second thoughts on that. Maybe her little body isn’t breezing through this and either it is her age and/or my own inability to handle this that I am not realizing how she really is. She is sick! And I know that, but living the day to day with a child who has Cancer is the hardest thing I hope I ever have to do. I find myself retreating to a place in my head where there is no cancer and she is just fine and this is just like a bad flu or something. And then she throws up or her hair lands in my hand and the harsh reality slaps me in the face. The reality of even though none of us are promised tomorrow my daughter really only has an 85-90% chance of making it out of this successfully, baring nothing out of the ordinary goes wrong. Now, I know those are great odds, the best you can get even, but up until this point the odds have not been in our favor even when we’ve been told that they were. SO I go through the motions of pill after pill, holding her, talking to Cooper and trying not to lose my mind and my marriage with all this. I pray the entire way down the hall when I wake up in the middle of the night or early in the morning and she actually hasn’t woken me up yet. I pray that she is still alive. I pray that she is just having a good night’s sleep; one that is not filled with night terrors of being poked or scanned or being fretful from not feeling well; one where she dreams of happy things like the zoo and the beach.

The past 2 months have been the longest ones of my life yet it seems like a lifetime ago that she was diagnosed. Our previous life really is gone forever and that is okay but we still haven’t really figured out this new one. I mean I know the counts rules and the fever rule and I have the medication schedule worked out but how to actually DO this I have yet to figure out. How to DO this life and it be a life that doesn’t drive me down into a deep pit or tear my family apart I have yet to figure out. I think we, Brent and I, both feel like we are drowning and keep fighting to come up for air to only have the air be full of bad stuff and so back down we go. Even the “our time” which is very little is still filled with Cancer talk and/or how many times Cooper fell down this week. (His faced is bruised now from falling onto his face off of the stairs in the garage. OUCH!) But it is all I can think about. It is all I do. I can’t even clean out a closet, do the laundry or make a dinner without the thoughts of how my children are doing with Cancer staying in my head. How is ViviAnne REALLY doing and how is Cooper coping with his Mommy being taken away from him with no warning for 4 days at a time? Will I ever get to be the Mom I always wanted to be? After last week, it doesn’t appear as though I will any time soon.

So in this deep pit where I am currently residing I happened upon a scripture in a book a dear friend gave to me for my birthday this year. I don’t read this book nightly just pick it up from time to time when I think about it. Well, tonight ViviAnne is so tired from Chemo that bedtime was early and fast so I picked it up. And here was the very first thing I read at a random page I turned to.

“Moments of darkness in our lives may be caused by the death of a loved one, the loss of a job or a home, or another great tragedy of life. Yet there is a greater darkness than these tragedies: the darkness in the eyes of one who has not felt God’s love, grace, and the assurance of his hope. There is hope for all of us. There is light. Jesus Christ, the Son of God, is our hope and light in the darkness.”

—Margaret Fishback Powers.

“For you were once darkness, but now you are light in the Lord. Live as children of light.”—Ephesians 5:8

HUH, I guess my Nana is right, God really is everywhere and has His hand in each and everything we do, all we have to do is be receptive to it. This is just what I needed coming off of 2 really bad weeks. Thanks, God.

Home From 7W

2008-09-16T16:37:00.006-04:00

ViviAnne came home from the Hospital on Sunday. She still has the kidney stones. The first update on how they will be treated was inaccurate. The doctors are monitoring them and will act accordingly when they become more of a problem. She also has her weekly Chemo treatment tomorrow.

The big challenge this week will be what to do with two little ones with no electricity. Thankfully, at least Nana's house has power.

Still in 7West

2008-09-13T19:49:00.003-04:00

ViviAnne is still in the hospital. She had a CT scan yesterday which helped the doctors determine that she has kidney stones. One of the stones is in a position to pass on its own soon, the other will be removed. Brent and Kristen are waiting on the final word from the Urologist in regard to how that procedure works. She will most likely be in the hospital at least another day or so, depending how everything goes.

She is doing very well though. She is laughing and playing and talking on the phone. Trips to the hospital like this are just going to be a part of life for the next 2.5 years.

Will post again when she is released.

Back to 7West

2008-09-11T20:15:00.003-04:00

ViviAnne is back in the hospital. She was having abdominal pain, blood in her urine and not acting right. Kristen took her to the clinic and she began vomiting. They admitted her back on 7west, hooked her up to IVs, took some blood and will try to find out the cause. We knew this would eventually happen, still its so sad to see her feel so bad. Hopefully she will only be there for a few days.

Serendipity

2008-09-07T16:00:00.001-04:00

Written by Daddy

On Thursday night, August 4, 2008 Kristen and I went to a pediatric cancer support group at Gilda's Club (www.gildasclublouisville.org). The namesake Gilda Radner, one of the original "Saturday Night Live" cast members, once said "Having cancer gave me membership in an elite club I would rather not belong to." This place embodied that precisely with sticks and bricks and a very warm, welcoming environment. Gilda's Clubhouse is beautiful place located on Baxter Ave. across from Phoenix Hill. Their sole purpose is to support people fighting cancer. Whatever shape "support" may take the organization aims to provide that service.

Kristen and I chose to go that night desperately seeking something; something from professionals or something from other parents who really understand.

I don't know what we were looking for.

Was it someone to say "You are doing all the right things?"

Was it for someone to tell us "You are doing this all wrong and should be doing this?

Was it for someone to thrust out of my analytical obstinate mind the constant recalculating contemplation that a 85-90% survival rate means that 1 in 10 children die?

Or maybe it was just for someone to say "I know, I've been there!"

We happen to be there on a night that was intended to re-organize or re-define what "support" meant for this particular group. The intent of the meeting was to have a sounding board of parents and patients and all the associated organizations to determine what else could be done or how better Gilda's Club could meet the needs of it members. Unfortunately, as it originally seemed, no other parents or patients showed up for one reason or another. Things happen for a reason, right!?! This turned out to be exactly what we needed. Kristen and I had the undivided attention of representatives of Gilda's Club, Kosair Children's Hospital, The Lymphoma & Leukemia Society of Kentucky, Hosparus, and the Children's Hospital Chaplin. The director asked us to introduce ourselves and our story. I still don't know how long the meeting was supposed to last, but over two hours later Kristen and I left Gilda's Club. The director indicated that just listening to just us gave the organizations a clear direction and the focus they needed. We could sense the consensus from across the dinning room table that each of these wonderful people representing each of these amazing organizations once again realized they are not just sustaining a worthy cause. They are supporting a Mommy and a Daddy and a beautiful baby girl in the fight of their lives.

We would rather not belong, but are excited to become members of this elite club. Kristen and I stepped out of the clubhouse doors into the misting late summer rain and a place we haven't been in a long time: On the same page and happy!