Severe nausea may (hopefully) be resolving

Isabella is now finishing day #8 of her 2nd chemo cycle, and hasn't eaten anything for 7 days. She seems to be pretty sensitive to the side effects of the chemo, often vomiting 6-10 times/day despite trying all types of anti-nausea medications. Over the last two days, the spontaneous vomiting has stopped, but she throws up any little bit that she tries to eat or drink. Finally tonight, she held down a ravioli, then a piece of watermelon (she has such little appetite that we are willing to obtain and feed her anything she wants). They still have IV fluids running to try to correct the electrolyte imbalances that have resulted (very low potassium). We keep saying, "She should be better tomorrow", but this time I think it might be true. The chemo has affected her taste buds, and she has been telling us that meat tastes funny, and sweet things are no longer appetizing. She bit a piece of pizza earlier and said it tasted "weird."

Pet Therapy

Rusk has many forms of therapy available to the kids.  What’s funny is that for adults, therapy can be a burdensome chore, that they dread.  Here in the Pediatric Rehab, everything is pretty much playtime!  For occupational therapy for example, the kids can draw or use play dough, which helps improve their dexterity.  For recreational therapy, they may play the Wii, which improves their hand-eye coordination. One of the therapy sessions that Isabella particularly enjoys is Pet Therapy where a group called Pets for Patients brings in an animal that the kids play with.  Today, they brought a small pony for the kids to play with.  The pony was pretty hairy, and responded to commands like sit, and shake hands, and play fetch.  Pretty smart pony! :)

Back to Rusk! Yay!

Yesterday was a good day overall. Isabella was transferred from the Pediatric unit to Rusk to continue her physical therapy.  Isabella also took the fifth and final dose of temodar pills for this cycle.  The dose is made up of two pills.  Although she had problems with the first pill, she took the second pill like a champ.  For this cycle, we created a "Pill Chart" for Isabella.  For each day she took her pills, she put a sticker on the chart.  You can see the chart to the right.

 

The therapists at Rusk were all amazed at Isabella's progress while in the Pediatric unit, especially with how she walks and uses her right hand.  We look to make even more progress over the next couple weeks.

 

Isabella continues to feel nauseous from the chemo, and although she eats a little bit, she still throws it up.  We’re hoping that the nausea wears off within a day.

The Case of the Curious Fever

So Isabella spiked a fever on Sunday afternoon, which required her to be treated with antibiotics. We still aren't quite sure what caused her fever on Sunday, but since she didn't show any other symptoms, the doctors suspected that it may have something to do with the port in her chest - which was infected a couple weeks ago. But, the bloodwork did not show the same bacteria as the previous infection, so for now, they have ruled out the port. If the bloodwork had shown the same bacteria, they would have had to replace the port in her chest, which would have meant another operation. But for now, we are just going to watch her closely.

Her temperature has been normal since yesterday, so they are looking to finally discharge her back to Rusk rehab on Wednesday. Isabella is still feeling nauseous from the chemo, but she has been doing better with the pill swallowing. Wednesday will be fifth and final day of temodar pills. She has started to eat stuff again, and finally tonight, she has been able to keep her food down.

We're hoping that the worst is behind us for this cycle.

Swallowing Pills

How do you teach a 5 year old to swallow a capsule?

The first method used to teach Isabella was not very successful. The teacher gave me a handout to describe the process and I'll try to summarize it: the parent leaves the room, the trainer asks the child to take a drink of water, the trainer then models the pill-swallowing behavior for the child. The child is then told to practice the behavior with the smallest placebo. If the child is successful, the child is praised. No rewards are to be given. The trainer then states, "Next pill . . ." and moves up in size. There should be no bribery, cajoling, or other persuasion. Protests or questions from the child are to be ignored . . .

Needless to say, Isabella wouldn't even acknowledge the woman was in the room with her. (I could have predicted this - Isabella often won't warm up to someone until she sees them for the 3rd or 4th time.) The woman apparently concluded that Isabella wouldn't participate and we never saw her again.

The child psychologists from rehab were then asked to see Isabella. They took a different approach, believing praise, bribery, and persuasion are sometimes necessary. If these ladies were drug-pushers, they'd be very successful! Again, parents left the room. They sat like they were all having a tea party, and were laughing and acting like it was all lots of fun. After playing Connect 4 several times, we could overhear things like, "OK, now we're going to try something really fun! Look what I can do with this Nerd candy! I'm going to put it on my tongue, take a sip, and look . . . it's gone. This is so cool! You have to try this, Mary!" Mary tries it and agrees, "You're right, this is easy and very cool to do. How about you try it Isabella!" Soon we were hearing that Horton (Isabella's elephant) was swallowing the Nerds, and wanted Isabella to do it, too. After the tremendous peer pressure, when Isabella finally did her thing, the rest of their time together became play time. She swallowed nerds for 2 days, then Tic-Tacs for 2 days, then a tiny clear placebo capsule filled with pink sugar the last 2 days before the real meds were to start.

The first day of Temodar came, and the whole family was there. We started our game of Monopoly, and stopped in the middle until everyone swallowed their "pill". Mom and Dad went, then Annalise tried a Tic-Tac, but couldn't, so she had to chew it. This made Isabella so proud that she could do something better than her sister, that she swallowed hers without a problem. I cannot describe how relieved we were.

Unfortunately, on the second day, Isabella had a fever and felt terrible. She was starting to throw up from the IV chemo already despite anti-nausea meds. We had a difficult struggle over several hours, and then finally forced the pills down while she had her mouth open crying.

This is not going to be as easy as we had hoped.

Nathaniel Helping at the Hospital

While at home, Nathaniel always manages to get to a broom and run around the house sweeping. We have no idea where he gets it from because I don't know if he's ever seen Julianne or me sweeping. :) Anyway, while visiting Isabella, one of the maintenance closets was opened and Nathaniel got a broom and got working! This video shows him running around the Pediatric floor cleaning up!

Monday, January 12 Update

Isabella had a pretty rough Sunday.  She already began feeling the effects of the chemo from Saturday and didn't have much of an appettite.  She was also feeling weak, so we didn't do much except for sit in bed and play with her Leap Pad (a children's computer).  Later in the afternoon, she developed a slight fever, which made her feel yuckier.  They administered her carboplatin with no problems, but when it came to the temodar, she refused to take it.  We were surprised because she had taken the temodar so quickly the day before.  We finally were able to get her to take the temodar, but with great effort.

They also drew her blood to run tests and gave her some antibiotics and Tylenol to get her fever down, which had spiked to 101.5.

So, unfortunately, this will delay her move back to Rusk, so we'll be here for a little bit more.

Right now, Isabella is actually feeling a little better.  She ate a little bit (but threw it up a little later), and is now playing a game with Julianne.  Also amazingly, her right hand continues to gain more flexibility.  Although she is able to close her hand, it is difficult for her to open her hand (especially Mr. Thumb, as we like to call him).  But today, she is able to hold her right hand wide open, including Mr. Thumb, and give me a high five!

10,000 Hits for Isabella

Sometime today, someone read Isabella's Fight for the 10,000th time. It's very heartwarming and gratifying that so many people are still keeping up with us and that we're not going through all this alone. We're not even two months into this and it already feels like it's been forever - that our "old lives" are just distant memories. This fight is like running a marathon, and unfortunately we're not even half-way to the finish line yet. But to put things in perspective, there are other types of cancers where the patient goes through chemo for over 2 years - we'll be doing it for (hopefully) just 5-6 months. And even after it's over and if Isabella is cured, we will forever still be anxious at every twitch or every headache or every stumble that she has - that's just the nature of the disease. When we pass this marathon's finish line, we will have to just keep on running.

How do WE do it?

A lot of people ask how we manage to handle everything going on. In addition to having at least either myself or Julianne at the hospital at all times, we still have two kids at home that we need to take care of. It doesn't help that we live in Connecticut, and to get to the hospital is typically an hour each way. Sometimes we drive in, but most of the time, we take the train in. Since NYU is just a few blocks from Grand Central Station, it's not a bad walk (except for those days that are really cold and windy!) Since I work in New York City, I have a monthly pass, so there is no additional cost for me to take the train - plus my office is only a couple blocks from the hospital, so it's really convenient for me to walk to the hospital during lunch or after work. Julianne's boss gave her a generous gift of some train passes to help defray the cost of Julianne taking the train.

At home, we usually have some family helping out with the kids while one of us is either going into the city or coming home. On days when I am home, I get Annalise on the bus then jump on the train with Nathaniel. I take him to the Stamford train station where my mom picks him up, then I jump on the next train into the city. Someone is usually home to pick up Annalise from the bus stop after school, then either Julianne or I will be home around dinner time to finish up the day with the kids. Usually we take 2 day shifts at the hospital, because when we were doing every other day, it felt like we were getting no time at home and it was really exhausting.

It should get easier once Isabella is done with her inpatient rehab at Rusk. We're hoping that she will be able to move from inpatient at Rusk and go home and just do outpatient therapy. This will be a lot easier on us and at least we'll all be home together. We don't have a definitive date yet on when she'll be done with therapy, but hopefully, it will be within two or three weeks. As long as she doesn't have any medical setbacks and can get a good two or three weeks of therapy straight through, we should be able to go home.

Cycle 2 Day 1 Complete!

Isabella, our little trooper, is done with Day 1 of Cycle 2 and she did great! She was able to swallow the temodar pills with little problems. Julianne and I both sighed in relief when she took the second pill and and she smiled so proudly afterwards. I am pretty amazed that it only took a couple days for Isabella to get the hang of swallowing pills, but Julianne will describe how she learned so quickly.

Chemo Cycle 2 Begins

They just administered the Vincristine and the Carboplatin will be
dripping for the next 4 hours. After that, she will take the Temodar
pills. Isabella has been able to swallow placebo pills over the last couple
days so hopefully she'll be able to do it now that it counts. It's
really sad that a child so young has to learn how to swallow a pill.

Isabella has had a really good couple of days. She's been in a great
mood and participating in all the activities. She's walking great and
flexing her right hand. Her appettite has been picking up, which is
key since she'll probably lose it again within the next couple days.
Also, one of the possible side effects of the chemo is loss of
hearing, but a test 2 days ago shows Isabella still has perfect
hearing.

Right now, the whole family is here at the hospital. It really is
heart warming to see all the kids together laughing and playing.
Julianne also took Annalise to get their nails done for a little
bonding time together.

--
Sent from my mobile device

~~~~~~~~~~~~~~~~~~~~~~~~~~~~
roneil@icatar.com
http://www.icatar.com/
http://isabella.icatar.com/

Chemo Cycle 2 Starts This Weekend

Isabella's second cycle of chemo starts this Saturday, January 10. Just as a reminder, the chemo cycle is comprised of three different medications: carboplatin, vincristine, and temodar. Carboplatin is given through the port in Isabella's chest over a period of 4 hours. Vincristine is given through the port in a single push. Temodar is given orally and is the one that Isabella really had problems taking during the first cycle. Since Isabella couldn't swallow the temodar pills, it had to be opened up and given in liquid form. The taste of it made Isabella throw it up. We are currently working with a child psychologist to try and teach Isabella how to swallow pills whole so that she won't have to taste the temodar.

The schedule for this chemo cycle is as follows:

Day 1 (January 10): Carboplatin, Vincristine, Temodar
Day 2: Carboplatin, Temodar
Day 3: Temodar
Day 4: Temodar
Day 5: Temodar
Day 7 (January 16): Vincristine
Day 14 (January 23): Vincristine

On Saturday, January 24, Isabella is scheduled for an MRI so that we can see how the remaining cancer cells are reacting to the chemotherapy. This will be our most anxious time. If it looks like the cancer cells are shrinking, then we will continue with the 3 more cycles of chemotherapy. If it looks like the cancer is continuing to spread, we will immediately move to radiation therapy.

We hope to get back to Rusk on Monday, January 12. Isabella hasn't gotten much therapy at all while in the pediatric unit, so we are anxious to get back to rehab.

Also, as a reminder, St. Thomas Church will be holding a prayer service on Wednesday, January 7 at 6:30 PM. You can refer to the "Prayers for Isabella" post below for more information.

Some Pictures and a Video

Not much new stuff to report today, but we do have a couple pictures and a video.

Here are me, Annalise, and Isabella in our Yankees hats.


Isabella doesn't seem to be bothered at all about her hair falling out.




Finally, here is a video of Isabella playing a lap harp that she received from her grandparents for Christmas.

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.