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.