Fred's Team

A few weeks ago, my cousin, Adlar, made a very touching request. He told me that he was going to be running in the New York City Marathon on November 1 and that he wanted to run in honor of Isabella. He would be running as a member of Fred's Team, which is a collection of runners with the goal of raising money for cancer research. Please take a few minutes to visit his site and if you can, give a couple bucks to show support for this amazing gesture. Below is an excerpt from his web site.

Adlar's Fred's Team Site
Make a Donation

This year, I'm running with Fred's Team to support
The Aubrey Fund for Pediatric Cancer Research at
Memorial Sloan-Kettering Cancer Center. Making
the decision to compete in a marathon was a big
one, and training for the race so far has been
grueling. However, I know that any challenge I
face in completing this personal goal is put into
perspective when I consider what children with
cancer face every day.

As most of you already know, cancer has affected
several members of my family as well as many
friends. Most recently, last November my cousin's
daughter Isabella was diagnosed with a massive
brain tumor. Her details can be found at:
http://isabella.icatar.com/. Her struggle strongly
influenced my decision to run the marathon and to
support a great cause.

Day +9 Update Plus What Next?

Surprisingly, Isabella's white cell count has shot up and she is no longer neutropenic (low white cells, susceptible to infections). This means that her stem cells that we transfused into her 9 days ago are doing their thing and making lots of white cells. Unfortunately, now that the white cells are fighting off all the foreign invaders in her body, she has been feeling extremely bad with lots of pain. The doctors say that this is a normal side effect of a large spike in white cells and that she should start feeling better in a day or two.

As Isabella continues to recover from her final cycle of chemo, we've been planning the next stages of treatment for her. First off, she will have an MRI to see what is left of the tumor. Then, we will be going through radiation therapy in Boston starting in mid-July to blast away any remaining cancer cells. The treatments run once a day for 6 weeks.

Although we wanted to avoid radiation as much as possible, due to the size and infiltration of the original tumor, the chemotherapy was not able to eliminate everything. The Boston radiology folks did review Isabella's history and think that she is a very good candidate for the radiation based on how she's responded to the chemotherapy.

Day +7 Update

So far, Day +5 and +6 have been Isabella's most difficult days. In addition to the nausea and mucositis, she also has been battling a fever so in general she's felt pretty rotten. Since they don't know what exactly is causing the fever, they've been pumping her with all sorts of antibiotics and antifungal medicines. Isabella hasn't really felt like doing much over the last couple of days except to watch TV or listen to music since any sort of motion or activity causes her pain. Because of the pain, Isabella is hooked up to a morphine drip which she can activate with the push of a button.

The good news is that we are hoping that Isabella has turned the corner. Today, Day +7, although she still felt pretty rotten, she didn't have to throw up as often and she sat up more. Also, her temperature came back down to almost normal, so hopefully, she should begin to feel better soon (as in Sunday or Monday).

Day +5 Update

Today is Day +5, i.e., 5 days after the stem cell transplant. Isabella continues to feel the effects of the chemotherapy. In addition to the nausea and lack of appetite, she is also suffering from mucositis. Mucositis is a common side effect of thiotepa where the mucous membranes along the digestive tract become inflamed or ulcerated and slough off. Isabella has been spitting out and vomiting the mucous on a regular basis and it looks pretty nasty. In most cases, the pain caused by the mucositis gets so bad that the patient is given morphine and Isabella is no different.

The good news is that we are halfway through the worst week. The mucositis should clear up within a couple days and her blood counts should start rising which will help her to start feeling better. On Day 11 (which will be Wednesday, June 3), the stem cells that were transplanted on Day 0 should have worked their way to Isabella's bone marrow and should be cranking out new blood cells. After that, they say that the blood counts come up very quickly, after which we would be able to go home.

But until then, we remain in isolation. We've played a lot of Uno and watched a lot of movies and TV. Isabella has also drawn a bunch of pictures that we put up on her wall with a bunch of other inspiring works of art. Since Isabella really hasn't had the strength to walk or move, being in isolation hasn't been has bad as we thought it would be.

Our 12 Year Anniversary

Today was not only a beautiful Memorial Day, but also marked 12 years since Julianne and I were married. In contrast to today, our wedding day was marked by heavy showers throughout the day. Today was also the first time in those 12 years that we did not wake up next to each other on our anniversary day as I was home with Nathaniel and Annalise while Julianne stayed at the hospital with Isabella. Since Julianne's dad is down visiting from Vermont, I was able to go into the hospital today so that we can spend some portion of the day together.

Isabella continues to feel the effects of the chemotherapy. Her doctors say that this upcoming week should be the worst of it (the main reason I chose this week to take vacation). In addition to her nausea, which seems to be increasing, her appetite has also gone to pretty much nothing. On top of that, her blood counts have really dropped and she is now officially neutropenic (low white cells) and she received a red cell infusion yesterday. We also expect her to receive platelets soon. Hopefully soon she'll start to feel less nauseous and sometime next week, her blood counts should start to recover. With any luck, we should be home by late June and be able to enjoy part of the summer before having to do anything else medically.

Stem Cell Transplants

Isabella had her stem cells transplanted back into her today. These were the stem cells that were harvested from her from the last couple of months. I've learned a lot over the last few months and added a few more things on Saturday as I watched her get the procedure.

Stem cells in general are special cells that can divide and turn into other types of cells. The peripheral stem cells that she received can turn into any type of blood cells. This is different from embryonic stem cells which can turn into any other cell including spinal cord or brain cells and the cause of many passionate debates. Once the stem cells are transplanted, it takes about 11 days for them to travel through the blood stream and to the bone marrow in her hip where they will hopefully implant themselves and begin dividing to create new blood cells.

After her stem cells were harvested, they were frozen and stored away. They added a preservative to the blood increase the viability of the cells while they are stored. When the patient is ready to receive the stem cells, the blood is thawed and put into a giant syringe and pushed through a central line (in this case, through Isabella's port). While the blood was being transplanted into Isabella, an interesting thing happened. Even though the push is happening through the port, Isabella got a very strong, weird taste in her mouth. This common occurrence happens because of the preservatives in the blood. The taste was so strong, that for the 10 minutes that the blood was being pushed, Isabella got extremely nauseous and vomited and had to spit several times. The doctors warned us of this ahead of time and we were prepared with lollipops to try and negate the taste, but it only helped a little. The really weird part to watch was that within a couple minutes of the syringe being emptied, Isabella felt better and perked right up.

So for now, we'll remain in isolation for at least a couple more weeks. Isabella is still feeling pretty sick from the chemo, but hopefully, those symptoms will start clearing up soon. Her appetite has been ok, but she hasn't been able to keep anything down, but they are pushing nutrition through her port.

Below are some pictures from a visit from Annalise and Grandpa.

Moved to Isolation

So today we were moved to an isolation room in the pediatric unit. An isolation room is the same as a regular room except that everything was sanitized before we moved into the room. And by everything, we mean everything, as they wiped down all our stuff as well. Moving into the isolation room is in preparation for Isabella receiving her stem cells later today (Saturday).

Also, her blood counts continue to remain steady, although the doctors expect them to drop within the next few days. The stem cells take about 7-10 days to travel through the blood stream to get to the bone marrow before they can start creating blood cells. So although she's not neutropenic yet (low white cells which make her highly susceptible to infections), she will be soon. During that time, all visitors will need to wear masks and gloves.

Isabella is still doing amazingly well. She has thrown up a few more times, and earlier today she didn't eat anything. But later in the afternoon, she started asking for some stuff to eat, including some pudding and chicken noodle soup. Of course, she threw that up a little later, but at least her appetite may be picking up. Later in the evening, she ate some chinese fried rice and pizza and milk and so far has kept that down. Later on Saturday, we also expect a visit from Annalise and Grandpa so that should certainly cheer her up.

Isabella also loves to participate in the many activities that the Child Life services provide here on the pediatric floor. Two of her favorite activities are watching the clowns perform magic and music group therapy. Here are two pictures below. The first is Isabella watching Looney Louie do some juggling. The second picture is with her in music group therapy playing some bongo drums.

Last Day of Chemo!

Today, Isabella got her last dose of chemotherapy, a three hour drip of thiotepa. As I wrote previously, although she is doing much better than in previous cycles, she has started to feel the effects of the chemo. She has vomited a couple times over the last couple days and her appetite has been reduced to almost nothing. Also, she is not yet neutropenic (low white cells count) and her other blood counts are still ok, but they continue to drop and we expect them to bottom out within the next few days.

Today, she also started to feel more tired and did not want to do much. For the last couple of days, she would have the energy to walk around and take part in some of the playroom activities. But today, she didn't feel like walking and took several naps.

So the plan for the rest of the week is to have a two day rest on Thursday and Friday. On Saturday, she is scheduled to receive her stem cells that we collected over the last couple cycles. This will help her blood counts recover. We will also be moved to an "isolation room" within the next couple of days in anticipation of her white counts hitting zero. An isolation room is simply a regular room that the nurses completely sterilize before we move into it. In addition, all visitors to the room (including the nurses, Julianne, and myself) must wear gloves, masks, and gowns. It should take about 10-14 days for her counts to start to recover, then, a few more days when we will be able to go home.

So while we're excited to be done with the chemotherapy, we will be on edge for the next couple weeks as Isabella will be extremely susceptible to infection and her body's immune system will not be able to fight any infections. Since she won't be able to leave the room, we will also need to find a way to entertain ourselves in the room.

Chemo Cycle 5 Continues

Today, Isabella's creatinine clearance was normal so they continued with the third dose of carboplatin. They will check her urine again in the morning just to make sure her kidney functions are still ok. Isabella has started to feel some of the effects of the chemo, but her appetite is still ok and her energy is still good. She receives anti-nausea medication, which seems to help during the times when she starts to feel nauseous. In previous cycles, by now, Isabella would be vomiting several times a day and not have the energy to get out of bed, but that is not the case, at least so far. Also, the anti-nausea drugs would have little effect.

On Monday, she will begin 3 days of thiotepa, a chemotherapy drug that she has not gotten yet. Since everything got pushed a day, she will probably not receive her stem cell transplant until Saturday.

A Slight Delay

Today, Isabella was supposed to receive her third day of chemotherapy, which consisted of carboplatin. One of the side effects of carboplatin is that it may affect kidney functions, so every morning they analyze her urine to check her creatinine clearance. This morning, her creatine clearance was lower than normal, which may indicate an issue, so as a precaution, the doctors decided to skip today's chemo dose, check her urine again tomorrow, and go from there. They didn't seem too concerned about it and have indicated that a high percentage of kids on this chemo cycle have this type of delay.

Other than that though, Isabella is responding surprisingly well to the first two doses of carboplatin. Her appetite has been excellent and she only had a little nausea on Friday morning. She did throw up a little today, but it was after she had just eaten and then played hopscotch about a dozen times! We don't think this vomiting was due to the chemotherapy because immediately after she threw up, she said she was hungry again and ate a plateful of baked ziti! Her energy levels remain high as well as her spirits.

She also got a visit from Annalise and Nathaniel today and the three of them played for a few hours this afternoon. In addition to the hopscotch, they played catch, played on the computer, and ran all around the pediatric unit.

Chemo Cycle 5 Begins

Isabella got her first dose of the last cycle of chemotherapy today, a four hour drip of carboplatin through her new port. It usually takes her a couple days or so before she begins feeling the effects. For now, she's feeling great and her appetite has been pretty good. So one day down, five more to go. Julianne stayed with Isabella last night and tonight, and it will be my shift tomorrow and Saturday. I don't know how we did this for four months before!

Getting Settled In

Once we got back to the Pediatrics unit, Isabella was so hungry she had a couple pudding cups. In this picture, she shows off her brown, pudding smile!
Sent via BlackBerry by AT&T

Out of Surgery

Isabella is out of surgery and resting in the recovery room. The surgery went well, but she is feeling a bit achy. Her appetite is ok as she had a popsicle and some yogurt and is asking for more food. We are now just waiting to be transported to the Pediatric floor.

Last Day of School

Today, Isabella went to kindergarten for the last day. Her teachers and classmates gave her a small party and some gifts as she left.

But tomorrow, as her friends continue with the school year, Isabella returns to the hospital. There she will have surgery to replace the mediport in her chest with a different type of port. She will then receive chemotherapy through the port for 6 days beginning on Thursday. We will probably be in the hospital at least through the first week of June, as it will take that long for her blood counts to recover. For details on this chemo cycle, refer to the post Chemo Cycle 5 Details.

A Word from our Senator

I got the following response from Senator Lieberman regarding the National Childhood Brain Tumor Prevention Network Act. If you haven't contacted your representatives yet, there are links of to the right.

Dear Mr. Icatar:

Thank you for contacting me regarding your support for the National Childhood Brain Tumor Prevention Network Act (S. 305), which was introduced by Senators Charles Schumer (D-NY) and David Vitter (R-LA). Companion legislation (H.R. 653) was introduced in the U.S. House of Representatives by Representative Barbara Lee (D-CA). I support legislative efforts to promote biomedical research so that people can benefit from new treatments, and maybe even cures, for diseases.

As you may know, S. 305 would require the National Cancer Institute (NCI) at the National Institutes of Health (NIH) to establish a National Childhood Brain Tumor Prevention Network. This new network would be tasked with conducting and coordinating research, providing grants, and issuing guidance and recommendations from a panel of research experts with the ultimate goal of preventing and curing pediatric brain cancers.

I understand that very little is known about the causes of brain tumors in children and that the few risk factors that have been identified explain only a small fraction of all such cases. However, this disease clearly inflicts painful heartache on families and cuts short the lives of far too many children who suffer from brain tumors. According to NCI, brain tumors are the third most common type of childhood cancer, after leukemia and lymphoma. Tragically, however, unlike leukemia and lymphoma, childhood brain tumors do not have the same favorable prognosis. Each year, approximately 2,200 children and adolescents are diagnosed with malignant central nervous system disorders, over 90 percent of which are located within the brain. Sadly, children diagnosed with malignant brain tumors have only a 60-percent survival rate; and those who do survive have long-term health problems due to the invasiveness of brain tumors and their treatment.

I recognize that childhood brain tumors present a unique challenge for doctors and researchers since treatment options for children differ from treatment of brain tumors affecting adults. Despite the differences between brain cancers and other childhood cancers, as well as the differences better adult brain cancer and childhood brain cancer, NCI does not have a separate division dedicated to studying childhood brain tumors. The new National Childhood Brain Tumor Prevention Network set forth in S. 305 would help fill this gap in research and treatment, providing a much-needed resource for experts and doctors, as well as grant funding for research programs.

S. 305 is currently pending consideration by the Senate Committee on Health, Education, Labor, and Pensions. To keep track of future actions on this legislation, you can go to the "Bill Tracking" service at http://lieberman.senate.gov/issues/resources. Please be assured that I will continue to keep in mind your support for critical efforts to combat brain tumors in children. We must do all we can to provide NCI with the resources necessary to study and fight this terrible disease and provide new hope for all children to grow up and lead active, happy, and healthy lives.

Thank you again for sharing your views and concerns with me. I hope you will continue to visit my website at http://lieberman.senate.gov for updated news about my work on behalf of Connecticut and the nation. Please contact me if you have any additional questions or comments about our work in Congress.

Sincerely,


Joseph I. Lieberman
UNITED STATES SENATOR

Nothing New to Report

There's nothing new to report. Isabella has been and will be going to school this week and the beginning of next week. It is nice to return to a little bit of normalcy, even if only temporary for now. We are still scheduled to begin the final chemo cycle a week from today, after which we'll be in the hospital for several weeks. So for now, we're all enjoying being home together.

Chemo Cycle 5 Details

We finally got some details for Isabella's final cycle of chemotherapy. Cycle 5 is completely different from the first four cycles. This cycle begins with 3 days of carboplatin, followed by 3 days of thiotepa. Thiotepa is another anti-cancer drug that we have not used on Isabella yet. Due to the intense dosages that will be given over these 6 days, we will then reinject Isabella with her own stem cells that we collected from the previous cycles. The stem cells will help with the regeneration of her bone marrow and blood cells. Right now, we are scheduled to begin on May 13, when the port in her chest will be replaced with another type of access. On May 14 (a.k.a. Day -8), we will begin with the first dose of carboplatin. After the last dose of thiotepa on Day -3, there will be a two day wait. Then on Friday, May 22, Day 0, we will do the stem cell transplant.

The doctors estimate that it could take from 10-14 days for her counts to begin to recover (roughly around Day 11), during which we will be in isolation in the hospital room. Isolation means that we will have the room to ourselves (no roommates) and they will completely sanitize the room before we occupy. In addition, during the isolation period, all visitors will be required to wear gloves and masks while in the room.

But for now, Isabella is enjoying life at home. She will be continuing with school this week and next week. Last night, we enjoyed 31cent scoop night at Baskin and Robbins. And finally, she'll be able to watch her dad play some baseball a couple times before we have to go back to the hospital!

Going Home Today!

Isabella's white cell counts are high enough that she will be discharged from the hospital and going home today! Her platelets count is still low so she will get "topped off" before going home. Platelets are usually the last of the blood cells to recover from chemotherapy. This comes just in time for us to be able to enjoy the summer-like weather that we will have in CT where it is expected to be in the 70s and 80s all weekend!

Below are a couple pictures I've taken over the last week. They were taken with a cell phone, so they are a little grainy.

If you zoom into this picture of Isabella, you'll see that her hair is actually starting to grow back. It'll probably fall out again during the next chemo cycle, but we're curious to see if her hair grows back differently.


Remember way back when and Isabella wouldn't smile for any pictures? Here she is with Daddy with a nice big smile! I took this one myself, so it's a little blurry, but if you zoom in, you will also see that Isabella's two lower teeth that fell out are starting to grow back in.


And finally, isn't technology great? This picture shows Isabella in a video chat with Annalise. Even though Annalise and Nathaniel can't be here at the hospital, they can both still see her over the Internet through our web cameras. The kids have fun with the special effects that they apply to the picture and you can see Annalise put herself into a heart.

Not the News We Wanted to Hear

The results from the MRI show that although the tumor has shown no signs of progression, it has also not shrunk. This is really disappointing considering how well Isabella has been acting and responding to the treatments. If anything positive can be taken out of this it's that the tumor is stable and not growing rapidly, but the fact that the tumor is not responding to the chemotherapy is not good.

So for now, the plan is to continue with the last cycle of intense chemotherapy in two or three weeks. This will then be followed by the stem cell transplant from stem cells that we collected from her beforehand. Following the stem cell recovery, we will then proceed with radiation.

In the short term, Isabella may be able to go home on Wednesday or Thursday. Her white count has started to come up, so as soon as they are at an appropriate level, we will be able to go home.

Thanks to everyone who has taken time out to keep up with Isabella's progress. It's still nice to know that we are not going through this alone and that people all over the world are with us.

Big Saturday Coming Up

So Isabella's blood cultures came back positive, meaning she definitely has an infection and needs to take antibiotics for 10 days (until April 25). The good news is that if her white cell count goes up, we'll be able to go home and administer the antibiotics at home instead of having to spend the whole 10 days in the hospital. But we'll be here at the hospital for at least few days.

We are also scheduled to have an MRI on Saturday morning at 8:00am. We're trying to be cautiously optimistic with this one and not get our hopes too high. It would be an amazing miracle if the cancer was all gone, but it would also be devastating if it hasn't gone down significantly or even grew since the last MRI. Realistically, we're probably somewhere in the middle and we're hoping to see very little, if any tumor left. We may not know the results until Monday.

Isabella has recovered pretty well from her fever. She's been eating great and acting normally for the last day or so. Her platelet count is also low and she had her first spontaneous nose bleed for this cycle which lasted for well over an hour. If she wasn't neutropenic, we would definitely be outside enjoying this wonderful weather.

Back to the Hospital

Isabella was just admitted back to the hospital. This afternoon at home, she had started to feel sluggish and started spiking a fever, so we drove her in. They will draw her blood and check the blood cultures to see what is the cause for the fever. She could be in the hospital up to 2 weeks depending on the results and the treatment.

Quick Update

Just wanted to give everyone a quick update. We had a nice and quiet Easter weekend. Grandma came down from Vermont to spend the weekend. Since we expected Isabella's blood counts to drop over the weekend, we didn't go anywhere or have visitors. Because of that, I ended up eating way too much ham and way too many hard boiled eggs (I think there was kielbasa somewhere in there, but it was all a blur).

Today, everyone went into the City to the Hassenfeld children's clinic for a checkup. Isabella had her blood drawn and as expected, she required a platelet and red cell transfusion. Physically, Isabella has been doing very well. In the previous cycles, when her platelet and red counts were this low, she would start bleeding spontaneously from her nose and she would be pretty lethargic. But so far, aside from a tiny bit of spotting, her nose has been ok and her energy level is pretty good.

Isabella has another checkup on Thursday, then we are scheduled for an MRI on Saturday. We have no details yet on when the next and final cycle starts.

Thanks for keeping up.

Super Sib Update

Today, as I wrote in yesterday's post is Super Sib day. We got a nice surprise in the mail as the Super Sib organization sent Annalise a trophy! Here is a picture of a proud Annalise holding her trophy. Click on the picture to see that the trophy is even personalized with Annalise's name!

Happy Birthday to a Super Sib

Today is Isabella's big sister's birthday. Ever since Isabella was born, you could just tell how much she loved Annalise and vice versa. Annalise has done a tremendous job over the last few months during this extremely difficult time. We've all had a lot of new jobs and roles around the house and Annalise has picked up her share. Whether it's helping Isabella take her pills, or reading a book with Isabella, or watching Nathaniel while we attend to Isabella, or acting as a pillow for Isabella when they watch TV. It certainly can't be easy for a 9 year old, especially one who loves attention, to watch her little sister with cancer or to only have one parent home at a time for several weeks. Annalise may have some "difficult episodes" now and then, but not once has she complained about helping out Isabella.

Tomorrow is also Super Siblings Day. There is an organization called Super Sibs which support the brothers and sisters of children who have life-threatening diseases. It's very easy for other children in a family to think "Hey! What about me?" as the parents attend to a sick child, and I'm glad there's an organization out there that thinks about the rest of the family during these times.

Chemo Cycle 4 Complete

Isabella had a much better day today. Julianne took her into Hassenfeld today where they gave her IV fluids to hydrate her. She immediately felt better and ate some food. The good news is that she kept it down. When she got home, she finished up the last of the chemo for the cycle (temodar pills). After waiting an hour, she ate some more and held that down as well. She has not felt any nausea since early this morning. The temodar and nausea may hit her again later this week, but it is a good sign that she has an appetite. Isabella is also scheduled to receive IV fluids at home this week to help keep her hydrated.

Spoke Too Early

The effects of the chemo started hitting Isabella a little harder yesterday. It looks like Saturday night's vomiting was the start of her nausea and not just a simple case of over-eating. Yesterday, although Isabella had a bit of an appetite, she would throw up whatever she ate a few minutes later. This goes for both solids and liquids, so we're going to have to find a way to keep her hydrated.

When she's not eating, Isabella's spirits are good. Yesterday, we participated in an Easter Egg Hunt at out church. Unfortunately, they served some cake which Isabella wanted right away, but then threw it right up. But after a few minutes, we walked back home and played outside for a while.

Today, Julianne is bringing Isabella into Hassenfeld to get her some IV fluids to get her hydrated, and we may need to do IV fluids at home if she can't hold anything down. Today will also be Isabella's final day of temodar for this cycle. She's had a tough time this time around with swallowing pills due to anxiety, which causes her to cry and choke. But after today, she won't have to take the temodar pills anymore. We also hope to be home for at least a few weeks before the start of the final chemo cycle.

Chemo Cycle 4 Day 3

Isabella is doing unexpectedly well so far in her chemo. So far, through day 3, she has not complained of any nausea and has eaten very well. After she took her meds for the day, we were discharged and are at home where Isabella ate a bunch more. So we have two more days of temodar than that is it for this cycle.

UPDATE: Well, right after I posted this, Isabella threw up everything she ate for dinner. Right after she threw up, Isabella was smiling and said her tummy felt better. We just think she ate too much and not necessarily something with the chemo.

Chemo Cycle 4 Begins

Well after a nice three week delay, Isabella is back in the hospital and has started Cycle 4 of her chemotherapy. This cycle is a little different from the first three in that there is no Vincristine given at all during the cycle. They still give Isabella Carboplatin today and tomorrow, and the temodar pills for the next 5 days. The carboplatin needs to be administered in the hospital, but the temodar can be taken at home, so we should be home on Saturday.

I'd like to say that we can see the light at the end of the tunnel, but to quote an old Metallica song, "the light at the end of the tunnel, is just a freight train heading your way." We're really nervous about the MRI scheduled for the 18th because that will show how much we've done and how much we really have left.

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?

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.