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.

Super-Duper-Shmooper-Fooper-Cooper-Hooper-8's

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.

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.

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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.

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.

Unplanned Admission

Roneil wanted me to give my perspective on what happened today. Isabella had a wonderful Christmas yesterday - aside from her disabilities, she really ran around like a normal kid most of the day. This morninng she was tired (we got back late), but participated in her morning classes. (No, the therapists don't even get a long weekend.)

In the afternoon, the PA came over to access her port and give her the scheduled vincristine dose after drawing labs. Within minutes of the PA leaving, Isabella started crying even more inconsolably (she should have been calming down by that point), and complaining of a severe headache all over her head. Then she began shaking all over. It was so bad, I thought she was having a seizure at first, but she was able to follow directions. Then she started vomiting. We were trying to calm her down, but anywhere we tried to touch her seemed like it caused severe pain.

By the time the nurse came in and got the resident, who saw her and called the attending, she was still crying and shaking, but so exhausted that she was dosing off in between screaming spells. We couldn't believe this was an exagerated anxiety type of response to having her port accessed (both other times it was a terrible experience - done as an "emergency" without numbing), because of how severe her symptoms were. The part that bothered me was that even as she was falling asleep, she was still shaking. Finally her nurse came back in to do her vitals, and her temp was 103.7!

Her oncologist came over from clinic within a few minutes and sent us right up to the inpatient floor. Her bloodwork had come back, and everything had dropped severely from 2 days ago - she was neutropenic (neutrophils 400), and on the border of needing platelet and packed red cell transfusions. The doctor's theory makes sense - her port was infected, but not causing any symptoms until it was flushed and pushed the bacteria into her bloodstream. That's why she was completely fine before the infusion, and it hit her like a ton of bricks a few minutes later.

I could tell everyone was nervous, because the nurse at Rusk brought her up without waiting for transport, and the nurse on the floor "stole" the antibiotics from the pharmacy without waiting for Isabella's name to be admitted into the computer (there was some kind of computer problem). I got nervous when they re-accessed her port and she didn't put up the usual fight - she barely complained. She's now on 2 "big gun" antibiotics, pretty much covering any bacteria you could acquire in the hospital.

Isabella perked up within an hour or two and is back to herself again. She took a long nap, and then we spent the evening playing cards. We're waiting to see if she'll need the transfusions tomorrow. How long she stays on this floor is still up in the air.

A Commitment to Fighting Childhood Cancer

Click the title to view an article that ran in today's New York Times about Dr. Jeffrey Allen. He's a neuro-oncologist and part of the team at NYU that is treating Isabella.

Julianne and I are utterly amazed with Dr. Allen and Dr. Sharon Gardner who is the other neuro-oncologist that we've been working with. This article basically confirms the hours that we expect they put in on a daily basis and wonder how they have a life outside of the hospital. In any case, we're grateful that there are people like them who are committed to treating and curing children like Isabella.

Back at the Hospital

We had a great Christmas day at home and have plenty of photos and video from the day that we will post later. Last night, we brought Isabella back to Rusk. Today, Isabella got her last dose of Vincristine, which now officially ends her first cycle of chemo. During the push through her port, Isabella developed a bacterial infection and immediately spiked a fever. She was just admitted to the Pediatric Unit where they are giving her antibiotics while they check her blood cultures to see exactly what could be in there. Right now, Julianne is with her and Isabella is feeling better.

Merry Christmas!

On behalf of the rest of our family, I would like to wish everyone a very, Merry Christmas and a Happy New Year. The last few weeks have been extremely challenging, and we have many more weeks ahead. I am positive we wouldn't be able to get through this without the tremendous support from our family, friends and community. It is amazing and truly humbling how some people who we hardly know display such compassion and selflessness.

Just like Thanksgiving, this Christmas will be different from the ones we've had before, but not as different. I will be taking Isabella back home in the morning and all the kids will be able to open their gifts as usual. And later that night, we'll take Isabella back to Rusk to continue her rehab. But once again, we are all praying for a miracle and that a year from now, we will be celebrating with a cured Isabella.

Home for Christmas Eve

The doctors have OK'd Isabella to come home tonight for Christmas Eve! She has completed her full day of therapy and we will be on our way home shortly. This will allow her to be part of our traditional Slovak Christmas Eve dinner.

Unfortunately, she is not allowed to stay overnight, so I will be driving her back to the hospital later tonight. Then, we will get up bright and early and go back home for Christmas day!

Isabella's Blood Count Improving

They did a routine blood count on Isabella today to check her white cell count. Her white cell count had been drastically lower since the chemotherapy, which makes her susceptible to infections. She has been receiving medication known as Granulocyte colony-stimulating factor (G-CSF or GCSF), which assists the body in regenerating her white blood cells. The doctors expected Isabella to have a low count until at least the end of this week.

Even before the doctors began the GCSF on Saturday, they had noticed that Isabella's white counts were starting to improve! Today, the measurement showed that Isabella is no longer neutropenic - she is still below normal, but her body seems to be recovering very well from the chemotherapy. She still has a little nausea, but overall, she's doing great. Her walking continues to improve, but her right hand will require more time.

She just has one more day of rehab on Wednesday (Christmas Eve), then she comes home for Christmas!

Isabella's Best Friend

Here is Isabella goofing around with her best friend, Imani, here at Rusk. They are wearing sunglasses that they received in one of the many goodie bags from contributions. Isabella loves playing with Imani, who is one of her roommates. When Isabella was in the pediatric unit for a couple days, Imani would ask us everyday if Isabella was coming back. And when Isabella did eventually come back, she was happiest to see Imani out of anyone and they immediately began playing with their toys.

Back at Rusk After a Great Day

Isabella is now back at Rusk after a nice, relaxing day at home. This was her first time home and out of the hospital in over a month. All the kids were excited to finally be home together. When we got home, we had a little lunch, the kids ran around, Isabella was getting a little too enthusiastic with her siblings so we had to calm them down a little. We played some video games (Rock Band) and listened to some Christmas music and danced around the living room. We took a nap, had some dinner, then played some more video games before coming back. It ended up being a typical Sunday at the Icatar household.

It was definitely nice to be home and feel a little sense of normalcy, even if it was just for a few hours. We'll have a couple days of rehab therapy as we wait for Christmas when we'll head home again.

We're Home!

We just got home from the hospital. Isabella couldn't stop smiling the whole ride home, she was so excited. When we got home, her brother and sister were also excited to see her. Nathaniel kept pointing to her and saying something (we think it was "Bella").

Coming Home!

Our string of bad luck continues as a noreaster is going through New
England trying to prevent us from taking Isabella home for the day,
but we're determined! I'm sitting outside the hospital now and
Julianne is bringing Isabella down and we'll be heading home. This
will be her first time being outside in over a month. Isabella will be
able to see the several inches of snow we got in the last few days,
our Christmas tree, Cleo our cat, and her fishes.

We'll be bringing her back early tonight, so we don't have much
planned for the day except a lot of sitting around and relaxing.
She'll be coming home again in a few days for Christmas. We should
have some pics posted later.

First Cycle Complete!

We just finished giving Isabella her last dose of Temodar and she really didn't make it easy. She threw up the first batch that she got, and fortunately, the hospital pharmacy was able to make her a second batch. With lots of patience and water, we were finally able to give her the entire batch with small squirts from the syringe (approximately 0.25 to 0.5 cc's per squirt). We had started with the first batch at 9:20 PM and she took the last squirt at 11:00 PM.

Earlier, they gave her the vincristine, and that went uneventfully as they just pushed it through the port in her chest. They also removed the access from the port, so she no longer has any tubes dangling from her. They'll have to re-access the port next week when she has another vincristine dose.

So round 1 is complete and we just hope that these drugs are doing what they have to be doing and that whatever is left of the tumor is reacting to the drugs.

We also just found out from the attending physician that they will allow Isabella to come home on a day pass on Sunday! We can't wait to have her home, even if it will just be for a day.

Things I Miss (Daddy Version)

I miss...

...coming home off the train and having the kids race over to see who could give me a hug first.

...going to Friendly's and "helping" the kids finish their desserts.

...sleeping in on Saturday mornings, only to wake up being crowded out of bed by all 3 kids (and the cat!).

...doing a triple-piggy-back with Annalise on my back, Isabella on Annalise's back, and Nathaniel on Isabella's back.


...finding Isabella sleeping in unique, precarious positions all over the house. My favorite is still when she fell asleep in bed with a book on her face!

...wrangling up the kids to go shopping at Costco or the mall. Of course, once we get to Costco, filling up on all the food samples.

...doing our "home-run handshake" whenever anyone on the Yankees hit a home run.

...going to Dave and Busters and spending $20 to win tickets on the arcade games. Annalise and Isabella would then spend 30 minutes trying to pick out a prize worth $0.50.

...being a good, ol' regular boring family...

Almost Done With This Cycle

Isabella had some problems taking the Temodar medication. This portion of the chemo is given orally, normally by capsule, but since Isabella can't swallow the capsule whole, they need to open it and dissolve it in water. Isabella had problems taking the medicine because it tasted so bad and she ended up gagging on it and vomiting it back up.

For the cycle, Isabella is supposed to take Temodar once a day for 5 days. She took it fine on Day 1 and 2 (Saturday and Sunday), but threw up Day 3 (Monday) and Day 4 (Tuesday). Since she basically missed the Day 3 and 4 doses, they decided to extend the cycle for two days to make up for it. Last night, Julianne discovered that if we put a couple drops of flavoring in the medicine and give Isabella a lollipop to suck on after taking the medicine, then Isabella is less likely to throw it up. It's been working fine so far since Isabella has been able to take Day 3 on Wednesday and Day 4 today and keep it down. She has one more day of Temodar on Friday and will be done with it until next month.

She also has two more doses of vincristine scheduled for this Friday and next Friday, but this is given intravenously so she shouldn't have any problems taking this. Just for completion's sake, the other medication that's part of the cycle is called carboplatin, and that is administered via IV drip over 4 hours on Day 1 and Day 2 of the cycle, so Isabella is done with that one for now.

Isabella has also been tranfered back to Rusk and just like before, immediately perked up and began playing with her friends again. She should begin her therapy sessions on Friday.

*** IMPORTANT ****

One of the side effects of the chemotherapy is that it reduces your white blood cell count which makes it harder for your body to fight off infections. Isabella's blood count has already dropped dramatically and she will soon begin receiving medication that will help her regenerate her white blood cells. So, not only does that mean that Isabella can't have visitors, but we also need to limit the visitors at our house to make sure that Julianne or myself do not get sick. So please call before dropping by and if you are sick or may even remotely be sick, please postpone your visit until you are sure you are not sick. They expect her blood count to be back to normal within a couple weeks.