Saturday, January 3, 2009

Isabella Update for Saturday

All of Isabella's blood counts are now back to normal. Her neutrophils (white cells), platelets, and hemoglobin are all at normal levels, after being at alarmingly low levels a couple days ago when she was having multiple, severe bloody noses. The only medication she is now on is the antibiotics to treat the infected port, and that will continue for another week.

Her right hand also continues to improve as she stretches it out and exercises it every day. She also uses it more and more on a day to day basis, for instance, she holds her cards while we play Super-Duper-Shmooper-Fooper-Cooper-Hooper-8's.

She'll probably stay here on the Pediatric floor for the next week, since she will start her next chemo cycle a week from today (Saturday, January 10). We would like to send her back to Rusk for a few days of physical therapy before chemo, but the insurance company seems to be balking about her moving back and forth between the pediatric floor and rehab. (It's amazing how much say the insurance companies have on determining the care that patients receive, but that rant is for another day.) So hopefully, she'll go back to rehab after the first couple days of chemo.

Isabella also remains in good spirits. Just yesterday, representatives from the movie studios came by and provided DVDs of The Tale of Desperaux to watch. (They were very strict on the distribution and required the DVDs be returned immediately after we were finished watching.) We play cards and Candyland. Her hair continues to thin and fall out. We think more hair would be out but it's still a pretty big mess in braids and giant knots. Julianne will probably cut the braids off and the rest of her hair will fall out. Isabella is surprisingly upbeat about her hair falling out. We keep joking that when she's completely bald, we'll paint a blue arrow on her head so that she looks like Ang, from Avatar, the Last Airbender.

Thursday, January 1, 2009


One of Isabella's favorite gamea to play here in the hospital is
Super-Duper-Shmooper-Fooper-Cooper-Hooper-8's. It's the same as Crazy 8's, but Isabella didn't want to call it that because it might hurt
the 8's feelings to be called crazy! :)

Sent from my mobile device

Medical Update

Isabella has medically been doing fine since this weekend. She had gotten a couple of transfusions and has felt much better since. Her platelets had fallen to 4 (no, that is not a typo). As the medical people reading this gasp, I'll explain that normal is 150-400. Platelets help clot blood. When they fall below 10, you can spontaneously hemorrhage. As an OB, we get a little nervous when platelets fall below 100, and start to really freak out when they fall down below 50. So you can imagine my reaction when the oncology fellow came in and told me hers were 4 one morning and was asking about any nosebleeds. As the platelets were being brought up, I stood her up to go to the bathroom and of course her nose started gushing. She was also pretty anemic - as the blood started dripping, you could see a spot of red, with a ring of water around it soaked into the clothes. It turned out her hemoglobin was 6! (Normal is 11.) Her neutrophil count bottomed out in the 70's, and is now back up into the hundreds. ("Neutropenic" is under 1000, and at <500 you are severely susceptible to infection.) She'll be on precautions for a while, but we've been lucky that no one in the family has gotten sick, and we've become very good at washing our hands all the time.

We are starting to see a lot of hairs on her pillow the last 2 mornings. A lot of people have asked what she thinks about losing her hair. A couple of days ago I sat down with her and told her that because of her chemo, her hair was going to fall out. Her response was a very matter of fact, "I know." I guess kids do overhear more than you realize. She told me she'd have to wear some hats so people don't see her bald spot. I told her she can show people her bald spot if she wants and doesn't have to wear a hat, but she seems to want to. The social worker came in to talk about some hair pieces that fit under hats for chemo kids, but I declined it because I don't want her to feel like she should be ashamed of being bald. My mother also had a good point: when was the last time a 5 year old looked in the mirror? (Besides to see how green her tongue was after eating a popsicle!) She's not at an age where she's particularly self-conscious about her looks, which I think is a very good thing.

I Don't Want To Miss A Thing

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream would never do
I'd still miss you, baby
And I don't wanna miss a thing

- Aerosmith, "I Don't Want To Miss A Thing"

When Annalise was first born, I used to listen to this song all the time. It pretty much summed up how I felt being a new father. Now, with Isabella in the hospital, I'm reminded of the song again and sadly it's under vastly different circumstances.

My New Year's Resolution is to not take any moments for granted, because you just don't know how much time you ultimately have. I don't know how many times the kids have "nagged" me to look at something and I was too "busy" with something else to pay attention. Looking back, what I was doing probably wasn't that important. Just today, I was playing around with Nathaniel and tickling him and he was laughing up a storm - and I sat back and reflected and was enveloped in the moment and I smiled. The other day, when Isabella was home and we were listening to some music, I picked her up and we began dancing. Again, I soaked in that moment and cherished it, and wished it would never end.

On behalf of our family, we wish everyone a healthy and happy New Year. We thank everyone for your continued support.

Tuesday, December 30, 2008

Prayers for Isabella

We know that there are many people out there praying for Isabella's quick and complete recovery and our family greatly appreciates it. Our parish, St. Thomas the Apostle here in Norwalk, CT is having a couple services to pray for Isabella.

The first is a mass for Isabella on Saturday, January 3 at 5:15 PM.

The second is a prayer group that will recite the rosary for Isabella on Wednesday, January 7 at 6:30 PM.

If you are in the area and have the time, feel free to stop by. They are located at 203 East Ave., Norwalk, CT 06855.

View Larger Map

Monday, December 29, 2008

Quick Monday Update

Isabella is still doing ok and her spirits are still up. Her platelet and hemoglobin counts came back normal, but her neutrophils (white cells) are still very low, so she is still susceptible to infections. In addition, she will need to receive antibiotics for 14 days to treat the infected port, so she will be staying on the Pediatric floor for a couple more weeks. Her next round of chemo will start just as the antibiotics will finish. This will further delay her rehab, but we are hoping that they will be able do some light rehab in her room. Finally, one of the side effects of the chemo is that Isabella is finding it difficult to swallow, so she has been eating and drinking very little. When she gets hungry, they do give her some pain medication so that she can eat.

Sunday, December 28, 2008

Isabella Doing Much Better

Well after a few hours of worry for us, Isabella has been doing much better today. After yesterday's events, which Julianne blogged, Isabella had been feeling pretty crummy and hadn't eaten or drank anything. She also had a really bad nose bleed early this morning, which left a pretty big clot that's blocking her left nostril. But today, I brought Annalise, Nathaniel, and Grandpa in to visit Isabella and she started feeling better and better as the day went on. I'm not sure if it was the visitors or the medicine kicking in, but Isabella started eating and drinking a little and even played more cards with everyone. Her temperature and blood pressure have also been good, so now we're just waiting on tomorrow's blood tests to make sure that she is recovering from this last dose of chemo.

Even more exciting is that she has slowly been opening her right hand more and more. Up till now, she has been able to move her right arm and hand, but not really able to open her fingers to be able to grasp anything. She would use her left hand to open her right hand. She started doing it at home on Christmas day once in a while, but today, she's been really working at it, opening and closing her hand 10 to 20 times in a row. Her thumb and pointer finger still need a little work, but she should be able to get them to work with some therapy and more time.

And yes, hopefully, we should have some of the Christmas pictures up soon. I'm just waiting to gather them from all the cameras that were present.