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. 

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!

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.

Beautiful Girl

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.

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. 

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.

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

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