R.I.P. Tito Toto

Sadly, we've lost another close family member to cancer. Last night, my Tito Toto (tito is uncle in tagalog) passed away after a very short battle with lung cancer. It hadn't been detected more than a few weeks ago.

RIP, Tito.

“I Can”, by Isabella Icatar

I meant to post this a while ago, but never had a chance.  While at the hospital, Isabella wrote a book.  Click the pages below to see a larger view of each page.

I Can

By Isabella Icatar

I can read books.

I can play a lap harp. (See video)

I can spell words.

I can play Uno.

I can throw a ball.

I can write with both hands.

I can be brave.

        

That last one is especially touching as it shows Isabella getting a shot in her leg.  She even got down to the details of showing the red blood in the syringe.  This amount of self-awareness from Isabella is both surprising, yet saddening.  All a 5 year old kid should be worried about is learning how to read or wondering when their next play date is, not learning how to swallow pills or remembering which leg gets the shot this time.

When Isabella first started the chemo, we would praise her and tell her how brave she was, and she would immediately cry.  My pseudo-psycho-analysis was that Isabella didn’t want to be “brave” because she had come to the conclusion that you can only be brave during bad times, or that something bad must be happening that warrants courage.  I explained to her that it was ok to be both brave and scared at the same time, and that sometimes, both mommy and me are scared too.  So for a while, we tried not to use the word “brave”.

Julianne and I have discussed how much we think Isabella knows is going on and we are surprised at how much she picks up just from random conversations we have.  Once when I was with Isabella in the hospital she just asked out of the blue, “What is in my head again?”  I then explained that she had some unhealthy brain cells in her head that caused her headaches and that although we got most of them out, she needs to take the medicine to get the rest of the unhealthy cells out so that the healthy cells can keep growing.  We emphasized to her that she did nothing wrong that caused this and that sometimes it just happens.  She then started feeling the scar on her head and asked if that’s where they took the tumor out and I said yes.  She wanted to see where they took the tumor from, so I took a picture of her head and showed it to her.  I then asked her if she wanted to see an example of them taking a tumor out of someone’s head and she said Yes!  I found a video on Youtube and Isabella was absolutely fascinated by the video and she watched it several times.

That interaction plus her drawing marked a change in Isabella.

Pretty soon, we’ll be back at the hospital and Isabella’s going to have to be brave again.  We’ll bring her book with her to remind her that she can be brave and we’ll all be there to be brave, and hopefully a little less scared, together.

Blood Counts Are Normal

Modern technology is great. Isabella's blood tests from this morning came back already and all of her blood counts are normal. So we are on schedule for the stem cell harvest next week, and Chemo Cycle 4 a week from tomorrow. We should have a day or two home next week before chemo starts.

Right now, Julianne is out with the kids enjoying a beautiful Spring afternoon at the playground. Hopefully, Winter has left us for good for this year.

20,000 Hits

It took a little bit longer than the first 10,000 hits, but yesterday, we had the 20,000th hit on the page. The updates have been fewer, which is a good thing as we try and get back to a normal life at home. My work has been steady, the girls are going to school, Nathaniel continues to wreak havoc around the house, and for a couple weeks it's been nice to forget about Isabella's cancer. Isabella is almost a "professional" bowler on the Wii. The main thing that has changed is that Julianne's full-time job is now staying home to care for the kids, which in itself is fine, since she doesn't get called in the middle of the night to deliver a baby anymore.

If you recall my "Things I Miss (Daddy Version)" post, it lists the things I missed since Isabella got sick. We've managed to do most of that list besides visiting Dave and Busters, but we can take care of that soon.

Today, Isabella gets another blood draw and we are hoping that her white counts are back to normal. If they are, we are scheduled to proceed with the stem cell harvest on Monday for 3 or 4 days. For this, we will be required to stay at the hospital. Then, next Saturday, we will begin Chemo Cycle 4. One good thing about postponing chemo for another week is that this weekend is my birthday. So instead of spending my birthday in the hospital, we'll be able to get out and do something....maybe even go to Dave and Busters! :)

Friendly’s Friday Update

Isabella had a great week.  She felt well enough to go to school from Tuesday through Friday.  She could have gone all week but she had an appointment at Hassenfeld on Monday.  We fully expected Isabella to only do half days at school, but she had enough energy to do a full day.  And her teachers said she was very active running around with the other kids all day - they were surprised she made it through the whole day.  Plus, when Isabella came home, she would also have occupational therapy.

Last night, Isabella's older sister, Annalise had a concert recital with her third grade class.  Annalise had been practicing her violin for quite some time now, so we were all excited to get out and see how she and the rest of her class did.  Annalise and her class did great, so to celebrate, we did something that we haven't done since Isabella got sick - we went to Friendly's for dinner!

We also have a medical update for Isabella.  Apparently, Isabella's white count has dropped again, which means that her bone marrow is still not fully producing white cells.  Her oncologist does not want to start harvesting stem cells until Isabella is producing white cells at a normal rate.  So this means another week delay, which also means another week at home and another week at school.  Part of us is happy that we get another week at home with Isabella, but another part of us is concerned how the lack of treatment is affecting the remaining cancer cells.

Here are some pictures from the week.

Here is Annalise at her concert.

Isabella with her classmate Kimberly cheering on Annalise at the concert.  Aunt Beth sits next to Isabella.

Isabella at Friendly’s.  They gave the kids these decoder spy glasses to find hidden messages in puzzles.

“We all knew Annalise had a big head, but this is ridiculous!”

Isabella's Lolo

Isabella's middle name is Emma. She was named after my dad, Emmanuel, who died about a year before she was born. Seven years ago today in 2002, we took my dad to the hospital because he had been suffering from some weakness in his right side and had collapsed while trying to stand up. An MRI of his brain showed a tumor. Unlike Isabella's tumor which is a primary tumor, my dad's tumor was a secondary tumor which had spread to the brain from his lungs (he had been a smoker all his life). On March 28, 2002 he went into surgery to have the tumor taken out. He then underwent some chemotherapy for a few weeks, but died less than 4 months later on July 25.

Today is also exactly four months since we took Isabella to the hospital and found her tumor. It was on that day that our lives were devastated with the news, and I in particular could not help but think about my dad's short battle before succumbing. By all accounts, Isabella is doing much better than my dad did. After his surgery, he never regained mobility and his speech was greatly diminished. Aside from her weakened right hand, which is greatly improving, Isabella's recovery has been nothing short of miraculous, and we hope that she will be fully cured.

But her battle is not over yet, and we still have quite a tough road ahead. Isabella never met her "Lolo" (which is filipino for grandfather), but unfortunately she now has more than just a name in common with him.

Getting Some Fresh Air

Now that the weather is starting to warm up, we're trying to get outside for some physical activity. Isabella had a visit from an occupational therapist today and did very well. Afterwards, we got outside for some fresh air and fun. We got some pictures with an old camera that we dug out. The picture above is of us taking a walk and the girls helping push Nathaniel in the stroller. The videos are of Isabella playing hopscotch and baseball in our yard.

Clinic Visit Update

Isabella went into Hassenfeld for a quick checkup. They drew her blood to check the counts to make sure she was recovering as expected. Her white blood cells are back up and she is no longer neutropenic, but her platelets are low. Our oncologist suggested we stop the neupogen shots (this is what helps stimulate the bone marrow to create more white cells), which should help the creation of platelets. On Monday, we'll go back to Hassenfeld and check her blood again to make sure that her platelets are coming back up.

What this means for the schedule is that everything is pushed back another week. Instead of doing the stem cell harvest next week, we'll start on the following Monday, March 23rd for 2 or 3 days. Then, we'll start Chemo Cycle 4 on Saturday, March 28 (which also happens to be my birthday). If all goes well, we can be back home again on Monday the 30th. We're a little concerned that Cycle 4 will now be 2 weeks delayed from when it should have started, but our oncologist said that no child has ever gone through the entire protocol without any delay.

So, we'll be home for another full week. The calendar over to the left is updated.

Life at Home and Another School Visit

So Isabella has been home for a couple days now and there's nothing too interesting to report. She's been getting a lot of *ahem* therapy from the Wii and some in-home visits from a therapist.

Today, she felt well enough to pay her kindergarten class another visit. Her teachers said that she actually ran around and played tag with her classmates, so this is the first time we've heard of her running! Later in the afternoon, she did get tired and asked to be taken home, so we had to go pick her up early.

Tomorrow, we'll be taking Isabella to the Hassenfeld children's clinic in NYC to check her blood counts. We expect them to be pretty good so that we can start the stem cell harvest early next week and Chemo Cycle 4 towards the end of the week.

I also apologize for the lack of pictures and video. Our camera finally konked out on us and there's a new model from Canon that I am waiting for to be released this month.

Some Scheduling Changes

Isabella's blood counts have improved to the point where they will be discharging us on Tuesday! Although the counts are improving, they're still not at the levels where they can harvest stem cells, so we'll head home for the rest of the week and the weekend. Early next week, her counts should be sufficient so that we can be readmitted to the hospital for the stem cell harvest. After that, probably late next week, we'll start Chemo Cycle 4. After this cycle, we will do another MRI to see any progress.

Isabella has also gained back most of the weight that she lost last cycle. We were worried there for a while since she lost so much weight, but she has eaten very well over the last few days. We expect her to do even better once she gets home.

Weekend Update - March 7

We are still at NYU for two reasons. The first is the infection that caused her to spike a fever last weekend. The second is her low blood counts. We think we've treated the infection completely and should be finishing up the antibiotics within a couple days. The blood counts are showing signs of beginning to improve, but Isabella is still severely neutropenic (very low white cells), although her counts have come up slightly. Her platelets continuously drop slowly, but her nosebleeds are getting fewer and stop more quickly. Yesterday, an ENT doctor (that's ear-nose-throat for us non-medical folks!) came by to cauterize one of the ulcerations in Isabella's nose. This seems to have helped her nosebleeds.

The plan so far is to finish up the antibiotics maybe by Tuesday. If her white cell counts improve, we can start another round of stem cell harvesting perhaps on Wednesday. She is scheduled to start Cycle 4 of chemo next Saturday, but that is really dependent on her blood counts being at a certain level. Last cycle was delayed a week to allow her counts to recover better, and that could be the case again this time. If it is delayed, we would then possibly be able to go home next weekend, for a few days before we start Cycle 4.

Otherwise, Isabella is feeling great and eating well. Because she is neutropenic, she's not allowed to leave the room, so we have to try to entertain ourselves. Her new game now is Uno.

Jasmina's Fight

NEW YORK (WABC) -- The family and doctors of a little girl from Manhattan are on a desperate search. Jasmina Amena, who turned 6 Wednesday, suffers from a rare and particularly deadly form of leukemia. Her only hope is a bone marrow transplant. So far a match has not turned up, and her doctors say time is running out.

Read more and watch video footage at source.

Jasmina lives a few doors down from Isabella's room at NYU Medical Center and is in desperate need of a bone marrow transplant for a rare form of leukemia. Since she was adopted, she has no family that can be contacted as matches and therefore they're hoping to get lucky with an anonymous non-related donor. Doctors estimate that without a transplant, she only has 2 months to live.

Jasmina's school in New York City is having a donor drive this weekend, but you can also request a home test kit.

One for Jasmina

Isabella's Doing Better

Isabella is doing much better since she's been admitted to the hospital. Her blood cultures turned out positive, so she does have some sort of infection that they are now treating with antibiotics. This means she could be here in the hospital for another 2 weeks (yuck!). But her fevers are gone and she's been acting fine.

Also, amazingly, she has started writing with her right hand again! Up till now, she had been using her right hand more and more to do things, but she hadn't written with it since she got sick. But yesterday, out of the blue, she just started writing with her right hand! So now, she can write with both her right hand and her left hand.

She also just stopped the modified Atkins diet. We estimate she was in ketosis for about 11-12 days. We don't know if it really did anything to affect the cancer cells, but we're hoping that there may be an additive effect with the chemo and the diet. Since she wasn't eating because of the chemo, this was the time to try it. We may give it another try during the next cycle of chemo. What made it difficult this time around was that she wasn't used to a lot of the food (especially the eggs and cream) and her lack of appetite. Before the next cycle, we're going to try and get her to like eggs and bacon and all the good stuff that make up the diet.

So Julianne and I are back to doing the hospital duty switches. It doesn't help that we had a foot of snow in CT today, so the trains are a mess. Shouldn't it be Spring soon?

Readmitted

We are back at NYU in the Pediatric department. Isabella had a slight fever this afternoon and since she is neutropenic, we didn't want to take chances so we drove her in. Her temperature was 102 at one point, but the last measurement had it at 100.3. The standard treatment is to give her antibiotics and watch her blood cultures for 48 hours, so we'll be here a couple of days. Isabella was a little groggy earlier, but has since perked up. She also had a couple of nose bleeds so she may need a platelet transfusion too.

Chemo Cycle 3 Completes

Today is Day 14 of Chemo Cycle 3 and Isabella received her last dose for this cycle (vincristine through her port). This was done in a quick visit to the Hassenfeld children's clinic in NYC and she is now home. Isabella continues to feel better and is eating and drinking well. Her blood counts have continued to drop with her platelets and white cells at very low levels.

We'll probably just take it easy this weekend and just play some games.

Slow But Steady Improvement

Just as with the last cycle, Isabella is finally slowly improving around Day 11-12 of the cycle. Her appetite is finally picking up today (she wolfed down a McDonald's hamburger, minus most of the bun for lunch) and she's beginning to act a little more like herself. All of her blood counts were low today, so she's receiving platelets infusion and red cells. She has had some nose bleeds over the last couple of days, which is a direct result of the low platelets (which clot the blood). She has also been lethargic, but we expect her energy to pick right up after her red blood cell infusion. During the last cycle, she immediately perked up after her red cell transfusion. Finally, she is also neutropenic again (low white cells), meaning she is susceptible to infections, but we are giving her neupogen shots at home to assist with the white cell creation.

So I think we've turned the corner for this cycle. Julianne has been speaking with the nutritionist and scouring the Internet for all sorts of low carb/high fat/high protein recipes that we are trying to get Isabella to eat. (I'll see if I can get Julianne to post some of her more unique recipes she's discovered.) Isabella has been pretty good at trying new things over the last few days, but her tastes are even pickier than ever - so we'll just have to wait and see what kinds of foods she likes. Isabella has one last shot of chemo (vincristine) this Friday, then at some point before the start of Cycle 4, we will do another stem cell harvest.

We will also be continuing with in-home physical and occupational therapy and learning.

Thanks for keeping up.

Quick Update, Plus a New Diet

We're still touch and go with Isabella. On Sunday for the first time in a week, Isabella was drinking well and she started to try and eat different things. Her appetite is still being affected, but we're not sure if it's because of a change in her taste or her stomach is still not feeling quite right. She's lost a lot of weight since the last round, but she is starting to taste a few things. We had some family over and for the first time in a while, she was smiling and engaging, so again, we had some positive signs.

Speaking of eating, Julianne found this interesting tidbit on the Internet. For years, children with epilepsy have been treated with a "ketogenic diet". Think of it as an extreme Atkin's diet - which means low or no carbs and high protein/fat. Studies found that children on this diet reduced or eliminated seizures. An interesting side effect that they saw was that in some cases with children who also had brain tumors, it also reduced the size of brain tumors or kept them from growing.

The theory behind this is very interesting and without getting too mediciny, let me explain. Our body (including our brain) gets its energy from glucose in our blood. The glucose comes from the starchy foods that we eat. When our bodies are starving (ie, low glucose), it can switch over and begin processing our fat cells. This is the basic theory behind those low-carb diets - reduce or eliminate the carbs in your diet so that your body eats away the fat. Now the interesting part of some preliminary studies is that our brain cells have evolved to be able to convert fat cells to energy, but tumor cells have not. This means that if there is no glucose for the tumor cells, they just shrivel up and either die or lay dormant, while the healthy brain cells continue to process fat cells for energy. We should also point out that there are no official studies or clinical trials for this diet for brain tumors in humans.

So for the last few weeks, Julianne has been researching the study, contacting the doctor who started the study, contacting nutritionists for their feedback, and looking for recipes. Although a menu of bacon, eggs, and steak sound great to me, Isabella might not find it too appetizing. We've offered her numerous high protein/fat items and she's refused them, but frankly, she's refused pretty much everything that we've offered (including ice cream and cake). We're just hoping that's because of nausea from the chemo and that she'll begin eating shortly. But this is going to be a very hard diet to maintain - just imagine a kid not being able to have birthday cake or ice cream? But if it keeps the cancer cells from growing, it'll be worth it.

A Difficult Week Ends Better

The chemo hit Isabella pretty hard for most of the week. She was very nauseous most of the week and did not want to eat or drink anything, which caused her to be very lethargic. We were getting pretty worried about her last night and were trying to force her to eat or drink anything. This would cause her cry and get so worked up that she would then immediately throw anything up.

Fortunately, we had an appointment today to go into Hassenfeld children's clinic at NYU to get another chemo treatment (Vincristine). This is given as a quick push through her port. While at the clinic, they gave her IV fluids, which immediately perked her up and gave her energy. It was like she was a new kid. But they are still worried about her weight loss, so we have another appointment on Monday.

Once we got home, Isabella had an apettite and asked to eat different things and has also been drinking pretty well. Her stomach is still bugging her and she threw up a little, but at least she is willing to eat. We expect her to really start eating and to be able to keep everything down soon.

Annalise, who has been with her grandparents all week up in Vermont, comes back home tomorrow. This should cheer Isabella up some more and we expect to have more Wii time.

Wednesday Update – February 18

Isabella has been home for a couple days now and she’s constantly on the brink of having to go back to the hospital.  The other day, her temperature rose to over 100 for a few hours, even though she was acting normal.  We gave her some Tylenol which helped reduce her fever and her temperature has been fine since.  Also, I mentioned that we need to make sure that she is being hydrated sufficiently.  We have to measure her urine output every few hours and if she doesn’t urinate a certain amount, we’re supposed to contact the children’s clinic so that we can bring her in and be given fluids through IV.  But every time at the last minute, she manages to pee just enough that we don’t have to bring her in!

Today is also Day 5 of the chemo cycle and she took her last dose of Temodar, which are the pills.  After the first day when she took the pills like a champ, the last 4 days were a little more difficult.  On Day 2, she started feeling more nauseous, so she didn’t want to eat or drink or take anything orally, so we really had to work at getting her to take her pills.  It was tough, but she did it.  As a reward for taking her pills, we setup a new Wii that my friends at my office bought for her.  She’s felt pretty crummy over the last few days, but the Wii is definitely something that will cheer her up for many days to come!

Back Home - Chemo Cycle 3 Continues

So we're back home with Isabella. We finished the first two days of chemotherapy, which is required to be done in the hospital because the carboplatin is given through her mediport over a 4 hour period. The remainder of the chemo will either be given at home (temodar pills over the next 2 more days) or in Hassenfeld children's clinic (vincristine through her port), which should just be a quick office visit.

Isabella has started to feel nauseous and her appetite has been affected. It's still early in the cycle, so we expect her to continue to be nauseous for a few more days. Our job is to try and keep her hydrated for the next several days or else we may have to bring her to Hassenfeld for IV fluids. But so far, Isabella has been doing ok at home. She is drinking a little bit and managed to keep down some food. She did throw up a couple times, but it wasn't immediately after eating.

We think she'll do much better at home than in the hospital. We will be making plans with the hospital social worker to coordinate in-home therapy and schooling. Being home will also be much more convenient for us so we won't have to have one of us stay overnight at the hospital - that was getting real brutal.

Back at NYU - Chemo Cycle 3 Begins

Well after an awesome week at home, we brought Isabella back to the hospital to begin her third cycle of chemotherapy. The worst part of today was that they had to reaccess her port, but it wasn't nearly as bad as in the past because we put some numbing cream over the area an hour before they accessed (they access the port with a 3/4 inch needle through her skin and into the port that was implanted in her chest). Honestly, the worst part is Isabella's anxiety because she remembered the past accesses. She cried and cried up until they accessed her, but once they poked through, she was fine and smiling!

Our weeks of practicing swallowing pills also paid off because she took the temodar pills with no problems! Her dose changed from 2 to 3 pills, but she was still able to take them with no problems. The nurses were so impressed with Isabella because the last two cycles, she made such a fuss with the temodar it could take a couple of hours to get her to take the pills. This time, it took her about a minute to do all 3 and she did it during a commercial break of Charlie Brown Valentine.

We will probably be back home on Monday. We will give Isabella the rest of the temodar at home (day 3, 4, and 5), while we will come in to Hassenfeld Children's Clinic in New York on day 7 and day 14 for the vincristine. You can keep track of Isabella's treatment schedule with the link over to the left or by clicking here.

Back to School

Today, we took Isabella to visit her kindergarten class at Marvin school. She was extremely excited to see her old friends that she couldn't stop smiling all morning. We had been planning this for a few days, because we knew that she would be continuing her chemo on Saturday so she probably wouldn't feel any better than she would on Friday. Plus, the school had planned some special parties because it would be the 100th day of school and they would celebrate Valentine's Day. We also knew that based on her chemo schedule, this would probably be Isabella's last chance to visit school for this school year before the summer.

Julianne already spoke to Isabella's teacher, Mrs. Stelly to coordinate the day. Mrs. Stelly would speak to the class and just let them know that Isabella was coming and not to get overly excited. She warned them that Isabella would have no hair, but most of them had already seen pictures of Isabella on this web site. Also, most importantly, she told them that what Isabella had was not contagious so they shouldn't worry about "getting cancer". But at the same time, we had to worry about a sick kid passing along a sickness, so we would be prepared with masks in case someone was sick.

We planned on bringing Isabella to school a little late, around 10 AM so that the kids could get settled in and there wouldn't be so much commotion. When we got to the school, Isabella started to get a little nervous. When she walked into the classroom, all the kids got excited to see her and one boy immediately shouted out, "She's got no hair!" (Luckily, Isabella is not self-conscious at all about her head!) Then, she fell right into line with the routine of the class. She walked over to the attendance board and placed her picture from the "At Home" section to the "At School" section. Then she ate some of the snacks they had to celebrate the 100th school day. After snacks, the teacher read them a book for story time.

We weren't sure how long we were going to let Isabella stay at school. If she got too tired or overwhelmed, we would take her right home. But after a while, it was evident that Isabella was having no issues at all and we decided to go home. We would come back for the Valentine's Day party right before the end of school.

Right before we left, we heard the kids ask if they were going to wear the masks. We decided they didn't have to since no one was really coughing. Some of the boys were actually disappointed at not having to wear the masks and one of them said, "Awww. I wanted to look like Darth Vader!"

Isabella spent the rest of the day at school and had a great day. She brought home a ton of gifts and candy for Valentine's day. She even lost a second tooth while at school, which she brought home to be rewarded by the Tooth Fairy. This was the perfect way to end our vacation!

Our 100th Post

This post marks the 100th post on Isabella's Fight.  I was contemplating what I could write about to make this any more special or significant, and ironically, the post will not be about Isabella, but about Julianne.

Very few of you actually see what goes on on a day-to-day basis, and although we try to paint a picture for you on this blog, it really doesn't capture everything.  One of the aspects that you don't see is how Julianne is dealing with the whole situation on a daily basis, and I know I won’t even come close to being able to describe everything that she’s done.  Yes, she had a couple of blog entries where she let loose emotionally, but not many of you have experienced her incredible strength first-hand like I have.  From that first night almost 3 months ago when we first found the tumor in Isabella's head, her fight-or-flight instinct switched over to fight mode and she broke off the switch.  I often tell Julianne that if I was dealing with Isabella by myself, she'd be dead because I just would not have known what to do during those first critical hours.  But Julianne was there, getting in the doctors and nurses faces, making sure that everything  that was being done was the right thing.  She had contacts in the medical field who suggested what we should do and where we should go.  And when we realized that Bridgeport wasn't the right place for us to be, there was no hesitation to get Isabella to where we needed to be.

When Julianne is at the hospital, she spends every minute tending to Isabella, making sure she's eating and drinking and getting the proper medications.  But once Isabella goes to sleep, Julianne jumps on the Internet to find articles and stories with the hope of finding something, anything that can cure Isabella.  She'll post questions on the support group forums or send e-mails to authors of articles requesting more information about a particular treatment they tried.  She'll contact the families of other survivors and get more information from them hoping to find something useful.  Once she finds some information, she'll pass them by Isabella's oncologist to get her opinion.  She won't get to sleep until 2-3am, then be up with Isabella first thing in the morning to continue caring for her. 

Unfortunately, Julianne's medical training can also be a curse.  She knows the statistics for pediatric brain cancers and their likely outcomes.  She didn't want to take a look at the initial MRIs because it would be too horrific - I looked at them and was happy I could make out the brain area.  She knows what the effects of such and such a medication are or the potential side effects of radiation.  She knows the risks of stem cell rescue and bone marrow extraction.  She knows what doctors mean when they say things in a particular way.  She's seen patients die.

And therein lies Julianne's biggest challenge.  Because in a way, Isabella is her most important patient ever, but first and foremost, Isabella is her child.  On a daily basis, she struggles with being a doctor and being a mother, and she does it amazingly well.  Yes, this blog is about Isabella and her fight against brain cancer, but it certainly wouldn't be complete without mentioning Julianne's complete and selfless dedication as she stands and fights right alongside her daughter.

Timing is Everything

I think we picked the absolutely most perfect week to be home with Isabella. Here in Connecticut, we are enjoying above average temperatures, mainly in the 50s all week and touching the 60s today. We've been able to take walks outside and go to the park and play at the playgrounds. Isabella has been riding on everything from the slides to the swings and even the monkey bars. Today, she even played a little soccer in our backyard. A couple weeks ago, she wasn't able to throw a ball because she wasn't able to open her hand quick enough to release the ball. But we've been having catches over the last few days and she's been throwing with little problems. Of course when it gets dark and cold outside, we settle in with our "music therapy", otherwise known as "Rock Band"!

We go back to the hospital on Saturday to continue with her chemotherapy, and the temperatures will again dip towards the freezing mark. We are hopeful that we are done with the long stays at the hospital and hope to be back home by next weekend.

Midweek Update

This is just a quick update.  Isabella has been home all week and I’ve been working from home as well so we’ve been spending a lot of time together.  The controlled chaos that Julianne wrote about earlier is back and it didn’t take long for someone to start crying about something.  Here are some quick pics from the week.

Nathaniel never likes sleeping in his crib.  For the first night, we wanted to keep Isabella in our room to be closer so we had her sleep in his crib.  Well once we put her in the crib, Nathaniel immediately got jealous and was insisting to go into the crib too!

Finally, a taste of normalcy

For the first time in almost three months, Julianne, Annalise, Isabella, Nathaniel, and I will be sleeping under the same roof.  This week, Isabella will be free from any medications and procedures, except for a quick blood draw on Thursday.  We are certainly going to try and make the most of this week.  Today was a great if not hectic start to the week, as we had to pack everything up from Rusk and the Pediatric unit to take home.  Once we got home it was a typical day with us having some lunch, dinner, and ending it off with a movie night watching Wall-E.  Here are some pictures from the day.

Isabella was so excited to go home, that from the time she woke up, she was running around and couldn’t sit still. 

Here she is getting ready to go home.  Annalise and Isabella are wearing High School Musical hats that they received from the hospital.

This is another nice picture of the sisters hand in hand as they leave the hospital.

Here are the girls leaving the hospital.  Isabella planted that plant a few weeks ago in horticultural therapy (I told you there were many types of therapy available!) This is our car after packing everything!

It was a long ride home and Isabella fell asleep on her sister.

Daddy’s finally home and cuddling with all of his kids.

Some Bad News and Some Good News

The bad news is that Isabella's platelet count hasn't quite fully recovered from the last round of chemo (platelets are the blood component that help to form clots to stop bleeding). She had the platelet transfusion on Thursday and had the bad reaction to it, but her platelet count has dropped a little more since then. In order to start the next round of chemo, we need to be sure that Isabella's body is producing enough platelets, but at this point, it doesn't look like she is, so Cycle 3 of chemo will be postponed.

The good news is that Isabella is being discharged today and we will be going home for a full week! We decided not to go back to Rusk because from previous experience with Admitting and the insurance company, she probably wouldn't get back until Wednesday or Thursday, then she'll have to come back on Saturday to start the next cycle. Instead, the doctors and us agreed that Isabella would do just as well and probably even better just going home. Her hand and legs have progressed so much that we don't expect to lose much (if any) progress by being home for a week.

We're all extremely excited to be going home. Julianne is on her way in now, and we'll have to pack the tons of stuff that we've accummulated over the last 3 months that we've been here. Sometime this week, we'll have to get another blood count for Isabella just to make sure that her platelet counts are back up. Then on Saturday, we'll come back in to continue her next cycle.

The Whole Tooth…

…and nothing but the tooth.  Isabella had 3 teeth come loose over the last few days.  Today, the first one fell out while she was eating her french fries.  She is so excited that it fell out and that she’ll be getting a visit from the tooth fairy that it was very easy to get a picture of her smiling this time.

P.S.  Sorry about the toothy pun.  I was debating over that one or “You can’t handle the tooth!”

The Scariest Machine You’ll Ever See

Isabella went through her second day of stem cell harvesting today.  The official term for separating the blood for collection is “apheresis”.  The apheresis machine (shown to the left, click to enlarge) is a pretty intimidating machine, with what seems like miles of tubing running all over.  Two tubes are connected to Isabella, one that collects her blood and one that returns her blood.  Her blood goes through this machine and goes into a big centrifuge in the base of the unit, which separates the blood into its various components.  The stem cells are then filtered out to a bag hanging from the unit.  The rest of the blood then travels through a heater (it’s the metal, cylindrical thing in the upper left of the unit) where the blood is warmed to normal body temperature before going back in.  I didn’t want to take a picture with this thing hooked up to Isabella, but needless to say, we were both amazed and nervous at the same time watching all this.

Depending on how many stem cells they were able to collect, we expect to do this for another two or three days, which would delay Cycle 3 of chemo for a couple days.  For the last couple weeks, we’ve been taking placebo pills with Isabella and she’s been doing great.  At first, we started with Nerd candy, then Tic Tacs, then Mike and Ike’s and now we’re  at regular capsules.  We want to make the pill taking as routine as possible so that when the time comes to take the real things, she’ll be very comfortable.

Isabella also had an unrelated scare earlier in the day before the harvesting.  Her platelet count was a little low, so they decided transfuse her with some platelets.  Almost immediately, Isabella started feeling itchy, and hives started developing all over her body and her ears swelled to “Ross Perot” proportions.  They immediately gave her steroids and benadryl which caused the symptoms to abate and also knocked her out for a little while.  They said it’s not unusual for this to happen from time to time, although this is the first time Isabella had such a reaction to a transfusion.

Stem Cell Collection Begins

Today, they began the stem cell harvesting on Isabella. Since they could not use her mediport to do the harvesting, they accessed a major vein in her leg while she was sedated in the Pediatric ICU. Then, for several hours, her blood was extracted through a machine which filtered out her stem cells and returned the rest of her blood. There is so much tubing involved that an extra unit of blood was added since she is so small and a relatively high volume of her blood would be in the machine at any given time. They had to continually monitor her blood pressure and temperature to make sure that she didn't have any adverse affects to the procedure. The oncologist and nurse practitioner stayed nearby for the whole process "just in case", but the whole process went very smoothly. (They even seemed happily surprised.) During the collection, Isabella was calm and watched a movie to keep her occupied.

Once the collection was completed, they wheeled her back to her room in the Pediatrics unit. They kept the access in her leg since they will have to do another collection tomorrow and Friday. They will count the collected stem cells each day to help determine whether they will need to collect more. If they don't get enough over time, they will have to do a bone marrow aspiration, which can be really painful, but they say that is rare. Once the collection is finally complete, we go right into the next chemo cycle.

Univision radiothon encourages listeners across the country to support St. Jude

(Full Disclosure - I work for Univision)

St. Jude Children’s Research Hospital has once again joined forces with Univision Radio, the leading Spanish-language radio group in the United States, in its annual radiothon to help St. Jude find cures and save children.

During the radiothon Promesa y Esperanza (Promise and Hope), taking place February 5 and 6, listeners can pledge their donations by calling 1-800-998-VIDA (8432) or by visiting www.promesayesperanza.org. The event will be broadcast to more than 15 markets around the country, including Los Angeles, California; Miami, Florida; Chicago, Illinois; New York, New York; and Puerto Rico.

Click here to read the rest of the article.

I mentioned in a previous entry that pediatric cancer (and pediatric brain cancer in particular) receives very limited research and funding. I don't know if it's just that I am more aware now, or if St. Jude has greatly increased their marketing push because I am seeing many more TV commercials and billboard ads increasing the visibility of these diseases. And now, they will be reaching out to the Hispanic community with a radiothon.

Super Sunday

Normally, for Super Bowl Sunday, we’re hosting a party or going over someone else’s house to watch this game.  This year, I took Annalise and Nathaniel into the City to visit Isabella in the hospital instead.  We had originally planned to take everyone to a circus, where we got tickets from the Making Headway organization.  But unfortunately, Isabella's blood counts were still low, so she wasn't able to go.  Julianne took Annalise and Nathaniel to the circus while I stayed with Isabella back in her room.

When they got back from the circus, we spent a very nice and enjoyable Sunday afternoon.  It was very typical with the kids running around and laughing with each other.  Since Nathaniel was sick for a few days last week, this was the first time in a while that we were all together, so it felt nice. 

Here are some pictures from the day.

As soon as Nathaniel walked in the door, he went over and gave Isabella a nice big hug!

Annalise and Isabella listening to her MP3 player while enjoying some pizza.

Annalise and Isabella got a bunch of toy horses from a friend and they played with them for hours.

Whole Lotta Nuthin’ Goin’ On

The last few days have been pretty uneventful.  Although Isabella has been feeling fine, eating and drinking fine, her blood counts remain low, so they're keeping her on the Pediatric floor.  She also continues to improve movement in her right hand and is using it more and more.  Her walking is almost normal now, and she only has a slight limp.  Amazing since she hasn't been at Rusk in almost two weeks, and she only receives limited therapy (maybe 30-60 minutes a day) in her room.   And because of her low blood count, she’s not even allowed to leave the room to go to the playroom or even just take a walk around the hallway.

It's too bad that she's still in the Pediatric unit because we received tickets to attend a circus on Sunday.  We were fully expecting her to be back to Rusk by now and to be able to take a day pass and see the circus.  But instead, we'll be taking Annalise and Nathaniel to the circus and Isabella will have to stay in her room.

Her third cycle of chemo will start a week from this Saturday on February 7.  Sometime next week, before the start of cycle 3, they will perform a stem cell harvest on Isabella. In a stem cell harvest, they will pump Isabella's blood through a special filter which removes and stores the stem cells then pumps the blood back into her.  The process can take 3-4 days.  The stem cells that they collect will then be frozen and saved until the 5th chemo cycle.  During the 5th chemo cycle, they give Isabella an extremely high dose of chemo which actually destroys her bone marrow.  At that time, they will reinject her stem cells back into her so that it helps regenerate her bone marrow.  She could take up to 3-8 weeks to regenerate her bone marrow, and that time will probably be the most dangerous period during this whole chemo treatment.

Hair Today, Gone Tomorrow

It looks like we got those hats just in time. Today, the giant clump of hair that was still hanging on to the top of Isabella’s head by a few strands finally fell off. Isabella had been asking for the last few days when her hair would fall out because what was left was really scratchy and bugging her. She kept scratching it and flipping it around until it finally just fell off. There’s still a few stubborn strands on her head that didn’t fall out, and I even see a few new stubs of hair already growing back.

What fell out is all still in one giant clump that Julianne has kept and will store. It sounds weird and it looks really creepy, but we hear that people’s hair sometimes comes back differently after chemotherapy – maybe straighter or curlier, or a slightly different shade of color. So this way, we’ll have something to compare to.

Isabella isn’t fazed one bit. She saw herself in the mirror and we took a bunch of pictures (as usual, it took a lot of work to finally get some pictures of her smiling!)

On our side though, it’s just another reminder of the reality of the disease that we’re battling. Before, she looked like she was just sporting a rebellious mohawk. But now, she definitely looks like one of those kid cancer patients on TV. We also now get a really good look at the incision scar left behind and see just how big an area they had to cut to remove the tumor. And even though I may get sad when I look at her now, it only lasts for a few seconds, because she’ll smile or laugh and that makes me smile.

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Schumer, Vitter Join Rep. Barbara Lee in Introducing Bill to Combat Brain Tumors in Children

With 2,200 Children Diagnosed with Malignant Brain Tumors Each Year, Critical Funding, Research, and Coordination are Desperately Needed

Legislation will Create a New Pediatric Brain Cancer Research Network within the National Cancer Institute to Study and Prevent this Tragic Disease

Washington, D.C. – U.S. Senators Charles E. Schumer (D-NY) and David Vitter (R-LA) joined with Congresswoman Barbara Lee (D-CA) today to introduce legislation that would require the National Cancer Institute at the National Institutes of Health (NIH) to establish a National Childhood Brain Tumor Prevention Network. The new National Childhood Brain Tumor Prevention Network would be tasked with conducting and coordinating research, providing grants, and issuing guidance and recommendations with the ultimate goal of preventing and curing pediatric brain cancers. Senator Schumer and Senator Vitter introduced the bill in the Senate today. Rep. Lee reintroduced the legislation in the House.

“There is very little that we know about the causes of brain tumors in children. But what we do know is that this disease confounds researchers, inflicts heartache on families, and shortens the lives of far too many children,” Senator Schumer said. “For kids enduring treatment, and family and friends watching them suffer, research provides a ray of hope. We must provide the National Cancer Institute with the mandate, and the resources, to study this terrible disease, because every kid should be afforded the opportunity to grow up healthy and happy.”

To read the rest of the article, click here.

Due to the relatively few cases of pediatric brain cancer, there is very little research done to treat and cure this type of cancer. In addition, the pharmaceuticals don't find it profitable to invest their R&D towards children's brain cancers. You can help by contacting your state senators and congressman and urge them to pass this bill.

To find and contact your state reps, click here.

Urge your Representatives to support House Bill HR 653.

Urge your Senators to support Senate Bill S 305.

We'll also provide updates to the bills over to the right --->

Hooray for Hats

My aunt, Tita Nits, belongs to the Over 60 Club in Stamford, CT.  When the group heard about Isabella, they all decided to make some hats and donate them to NYU Medical Center’s Pediatric Unit.  We’d like to thank them for their time, thoughts, and generosity.  We gave Isabella first pick of the hats and as we expected, she picked out the pink one.  Here she is modeling her new headwear.

MRI Update

We are still waiting on the official MRI report. Initial indications are that the tumor is the same size, but there is less perfusion, meaning that the remaining cancer cells are receiving less blood flow. Although it is very disappointing not seeing any decrease in the cancer size, the oncologist says that we can take the less perfusion as a positive sign. As such, we will be continuing with two more cycles of chemotherapy, followed by a final blast of high dose chemotherapy with stem cell rescue.