Friday, December 26, 2008

December Pictures

Photos from Aunt Stacey



































Quick Update

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. 

Thursday, December 25, 2008

Merry Christmas

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!

Sunday, December 21, 2008

Delayed Intensification Moves On

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.

Tuesday, December 16, 2008

Friday, December 12, 2008

Chemo Delayed

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.

Wednesday, December 10, 2008

ViviAnne is doing well...

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. 

Friday, December 5, 2008

PawPaw Takes One for the Team.

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.

Wednesday, December 3, 2008

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.

Monday, December 1, 2008

Update from Mommy

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

Sunday, November 30, 2008

Rough Patch

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.

Tuesday, November 25, 2008

Update from Mommy








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!

Wednesday, November 19, 2008

She Pooped!

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!!

Monday, November 17, 2008

Chemo Update

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.

Thursday, November 13, 2008

One thing Cancer has taught me...

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!

Thursday, November 6, 2008

Halloween (long overdue)

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.

Thursday, October 30, 2008

NoogieFest

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.

Tuesday, October 28, 2008

Information

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.


Sunday, October 19, 2008

Kosair Video featuring ViviAnne

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

Wednesday, October 15, 2008

D-Day

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.





Sunday, October 12, 2008

PawPaw's Post

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”.

Tuesday, October 7, 2008

Light the Night

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!