Home Sweet Home

So we are back home after a nice quick stay at the hospital. We had expected to be at the hospital a couple more days for the stem cell harvest, but they were able to collect 3 times the required amount of stem cells from Isabella in one shot.

Today was also a special family fun day at the hospital where visitors from Ringling Bros. and Barnum & Bailey Circus came by to entertain the kids. There were a couple news crews and reporters to cover the story, so if we end up being on the news, I'll send out the links. There were a couple clowns and magicians there, and we had a nice picture taken with Isabella. The picture was taken with a "magic" camera, where you could see the picture almost immediately after you snapped the shot. You couldn't see the picture on the back of the camera, but it would magically appear on a piece of white paper that came out from the camera. Amazing!

Not Cool!

Isabella and I just had this conversation while we were playing Uno in the hospital, after I had her draw two cards.

Isabella: What does draw mean?
Me: It means to take cards from the deck. Do you know another meaning for 'draw'?
Isabella: To draw on a piece of paper?
Me: Yes.
Isabella: Do you know what other word has two meanings?
Me: What?
Isabella: Cool.
Me: What are the two meanings?
Isabella: Cool, like you're cold (shivering).
Me: Yes, and what's the other one?
Isabella: Cool, like "you're cooooool".
Me: Oh, like me?
Isabella (without even thinking): No! Like Nathaniel!

Scheduling Updates

Since Isabella had an extra couple of weeks of recovery time from chemo, her blood counts were at very good levels. The doctors feel she may have gotten enough stem cells in today's collection, but they will officially know tomorrow morning. The worst case is that they have to do another collection early tomorrow. Since you have to wait 48 hours after the collection to start chemo, they'll be sending us home tomorrow and start chemo on Thursday morning. We'll be readmitted to the hospital Thursday, hopefully for just two days, then be home on Saturday.

This cycle of chemo will be different from the previous three in that they will not be giving Vincristine on Day 1, 7 and 14. Instead, they will just be doing Carboplatin on Day 1 and Day 2, and Temodar on Days 1 through 5. Then, that's it for this cycle! Isabella will get her MRI done on April 18, then we're not sure when the final, really intensive Chemo cycle begins. It will be during this final chemo cycle when her bone marrow will be killed by the chemo. They will then inject the stem cells that they collected back into her to regrow the bone marrow and restimulate the creation of her white cells. That whole recovery period will take 4 to 8 weeks in isolation in the hospital. It will take a year for her body to fully recover.

Thanks for keeping up to date. The weather is getting nice here in the Northeast and hopefully you are enjoying your Spring.

Vacation Over - Back to NYU

After a busy weekend, Isabella is back at NYU Medical Center for a few days. She is scheduled to have her stem cells harvested again. You can read about the stem cell collection back in our archives. Julianne and I will be swapping hospital duty for the next few days, and we should be home by Thursday or Friday. Then Saturday, we'll be back in the hospital to begin Cycle 4 of her chemotherapy.

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?