Whole Lotta Nuthin’ Goin’ On

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

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

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

Hair Today, Gone Tomorrow

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

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

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

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

View Slideshow

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

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

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

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

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

To read the rest of the article, click here.

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

To find and contact your state reps, click here.

Urge your Representatives to support House Bill HR 653.

Urge your Senators to support Senate Bill S 305.

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

Hooray for Hats

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

MRI Update

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

Pretty Big Day Coming Up

Isabella finished up her second cycle of chemo on Friday with the last vincristine dose. Isabella has been doing very well over the last few days. She's felt great, been engaging, eating and drinking well (we just found out she loves a mint chocolate chip milkshake). She has been using "Mr. Righty" for practically everything and building up strength in her hand. She is also walking much better than before. She's still neutropenic (low white cells), so we are still very careful around her - for example, Nathaniel has a runny nose, so he will not be able to visit her tomorrow. We are planning on going back to Rusk on Monday to continue her physical therapy.

On Saturday, she is scheduled to get an MRI where we will see the effects of the chemo on the remaining cancer cells. We are hoping to see a great reduction in cancer cells and at worst, see no growth in those cells. We should know the results on Monday. Part of me wants to just get it over with and see the results, and part of me does not want to see the results. Part of me wants to hope for the best, while part of me wants to prepare for the worst and perhaps be pleasantly surprised. This constant emotional tug-of-war, as well as just the not knowing is mentally and emotionally exhausting. This is not an uncommon state that people experience. I just read an article where millions of people don't get routine physicals or go to the doctor just because they are scared to find something and would rather not know. It's not logical, but it is human nature.

So as soon we know, we'll let you know. Thanks for reading.

Reality Starts to Set In

Disclaimer - if you're not in a mood for a tear-jerker, skip this entry. . .

The reality of Isabella's cancer is starting to sink in.

A short time after her surgery, I had gone to one of the school assemblies to see Annalise's class sing. I saw Mrs. Stelly's kindergarten class and actually scanned the group to see if I could find Isabella even though I knew she could not possibly be there. A couple of weeks ago I was waiting to get Annalise at the bus stop, and while watching about a dozen kids unload, I envisioned Isabella climbing out, too. Then suddenly there were no more kids and the doors shut and the bus drove off and I had to admit that she really was in the hospital.

I have finally stopped trying to find Isabella in her bed when I wake up in the morning so that I can tell myself everything's OK, it was just a really, really bad dream.

I am a member of this on-line support group for parents of kids with brain cancer. People offer some really good advice on everything from sibling care to meds to new protocols that they've found. Normal, non-medical people discuss medication side effects, dosages of radiation, and the latest research studies they've come across in their desperate search to find something else to try. I'm getting used to the "lingo" - people often sign their names with "mother of (name), ___ years old, diagnosed (date) w/ (cancer type), chemo (dates), radiation (dates), recurrence (dates), now on (meds/ protocol)." Or if they have lost their child they say, "mother to Angel (name), forever 11." Or forever 3, or forever 17. Then I suppose most move on to the bereavement support group.

Every once in a while there's a post that someone's child just lost their battle. One that really upset me happened a few days ago. Her boy was in 5th grade and I didn't know them personally, but just found out he was treated at NYU also. She wrote, "As difficult as the last two years have been for Jacob, the end was peaceful. Lying between us as we recounted stories and sang to him, Jacob just went to sleep. Pain free. At home." I still cry every time I read this. I told Roneil I wouldn't have any stories to tell. I wouldn't be able to sing if I knew he was dying. I COULD NOT GET THROUGH THIS. My mind starts to wander, and I think, what did she do with her 6 year old son during all of this? When does she call someone to take the body? And then my mind screams, "Stop thinking about this! This will not happen. This CANNOT happen!"

One of the moms created a "Wall of Courage" that she displayed at a local "Relay for Life" event. She just created a virtual version of it to circulate around:

http://heidster.com/relay_2008/virtual_wall/

Watch the video - you should see these beautiful children. The author included that, "Unfortunately, there are a number of children that have since become angels as this wall was created in May of '08. Please feel free to circulate and share this link."

When I do literature or internet searches on Isabella's type of tumor (I can't seem to stop myself from doing this), the information is so dismal. I try to cling to the one sentence that talks about the occasional exception - there are a few reports of children surviving.

Why did this have to happen to my precious Isabella? She never did anything wrong. She is a good and kind and smart and funny and friendly and lovable girl. No one could ever deserve anything like this. No one should ever have to go through this.

I cannot lose her. I would not be able to go on.

I am having a very difficult time.

In Case You Missed It

One of Isabella's classmates, Henry, left a note in the Update to MLK update thread. Isabella read it and typed out the reply herself!

Anonymous said...
I miss you Isabella very much have a nice day
Love Henry

January 20, 2009 6:30 PM
Anonymous said...
Thanks for the note Henry. I miss you and everybody in K-2.

Isabella

January 20, 2009 10:41 PM

Update for Wednesday, Jan 21

The nausea effects from the chemo seem to have all gone, and Isabella's appetite is definitely picking up (she just ate a big bag of sour cream and onion chips and some chocolate milk). She also has recovered from the most recent infection and has not spiked a fever since she's been up here on the pediatric floor.

As expected, her blood counts have continued to drop. She's had a bunch of nosebleeds and she's gotten a couple of platelet transfusions. She's also neutropenic again (low white cells) and she is receiving neupogen shots, which help stimulate the growth of the white cells. She's got one last dose of vincristine this Friday to finish up this second chemo cycle, then she will get her MRI on Saturday.

Unfortunately, her rehab is again disrupted with her being here. We just can't seem to make any traction and get momentum going for the rehab. Since Isabella is neutropenic and she's due to get another chemo shot this Friday, we will probably keep her here in the pediatric unit through the weekend, then hopefully go back down to Rusk early next week. At least we got our old room back, which is a big double room with no roommates, so we have the whole room to ourselves!

Update to MLK update

Well, she spiked a fever again to 104. She also had 2 pretty impressive nosebleeds - enough to need a transfusion, so she just bought herself an admission back to the inpatient floor tonight.

Considering what's been going on today, she's been in pretty good spirits tonight. So I'm going to stop writing and get back to our favorite card game Super Duper Schmooper 8's.

MLK Day Update

Isabella was finally starting to lose the effects of the chemo over the weekend when she suddenly spiked another fever this morning. As you read before, Isabella has been nauseous and not able to eat, but finally on Saturday and Sunday, she was able to eat little bits and pieces and kept it down. Last night, she started feeling more sluggish and finally this morning when they took her temperature, she was up to 102.

They gave her some Tylenol and some antibiotics and her fever is back down and she is feeling a little better. All of her blood counts are still normal, but dropping pretty quickly, so it's not helping that she hasn't been eating. They have been running IV fluids to keep her hydrated.

We were possibly hoping to get her home on a day pass after her morning therapy was done, but obviously, we won't be able to do that.

Severe nausea may (hopefully) be resolving

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

Pet Therapy

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

Back to Rusk! Yay!

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

 

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

 

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

The Case of the Curious Fever

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

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

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

Swallowing Pills

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

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

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

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

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

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

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

Nathaniel Helping at the Hospital

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

Monday, January 12 Update

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

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

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

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

10,000 Hits for Isabella

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

How do WE do it?

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

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

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

Cycle 2 Day 1 Complete!

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

Chemo Cycle 2 Begins

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

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

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

--
Sent from my mobile device

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

Chemo Cycle 2 Starts This Weekend

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

The schedule for this chemo cycle is as follows:

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

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

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

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

Some Pictures and a Video

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

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


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




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

Isabella Update for Saturday

All of Isabella's blood counts are now back to normal. Her neutrophils (white cells), platelets, and hemoglobin are all at normal levels, after being at alarmingly low levels a couple days ago when she was having multiple, severe bloody noses. The only medication she is now on is the antibiotics to treat the infected port, and that will continue for another week.

Her right hand also continues to improve as she stretches it out and exercises it every day. She also uses it more and more on a day to day basis, for instance, she holds her cards while we play Super-Duper-Shmooper-Fooper-Cooper-Hooper-8's.

She'll probably stay here on the Pediatric floor for the next week, since she will start her next chemo cycle a week from today (Saturday, January 10). We would like to send her back to Rusk for a few days of physical therapy before chemo, but the insurance company seems to be balking about her moving back and forth between the pediatric floor and rehab. (It's amazing how much say the insurance companies have on determining the care that patients receive, but that rant is for another day.) So hopefully, she'll go back to rehab after the first couple days of chemo.

Isabella also remains in good spirits. Just yesterday, representatives from the movie studios came by and provided DVDs of The Tale of Desperaux to watch. (They were very strict on the distribution and required the DVDs be returned immediately after we were finished watching.) We play cards and Candyland. Her hair continues to thin and fall out. We think more hair would be out but it's still a pretty big mess in braids and giant knots. Julianne will probably cut the braids off and the rest of her hair will fall out. Isabella is surprisingly upbeat about her hair falling out. We keep joking that when she's completely bald, we'll paint a blue arrow on her head so that she looks like Ang, from Avatar, the Last Airbender.

Super-Duper-Shmooper-Fooper-Cooper-Hooper-8's

One of Isabella's favorite gamea to play here in the hospital is
Super-Duper-Shmooper-Fooper-Cooper-Hooper-8's. It's the same as Crazy 8's, but Isabella didn't want to call it that because it might hurt
the 8's feelings to be called crazy! :)

--
Sent from my mobile device

Medical Update

Isabella has medically been doing fine since this weekend. She had gotten a couple of transfusions and has felt much better since. Her platelets had fallen to 4 (no, that is not a typo). As the medical people reading this gasp, I'll explain that normal is 150-400. Platelets help clot blood. When they fall below 10, you can spontaneously hemorrhage. As an OB, we get a little nervous when platelets fall below 100, and start to really freak out when they fall down below 50. So you can imagine my reaction when the oncology fellow came in and told me hers were 4 one morning and was asking about any nosebleeds. As the platelets were being brought up, I stood her up to go to the bathroom and of course her nose started gushing. She was also pretty anemic - as the blood started dripping, you could see a spot of red, with a ring of water around it soaked into the clothes. It turned out her hemoglobin was 6! (Normal is 11.) Her neutrophil count bottomed out in the 70's, and is now back up into the hundreds. ("Neutropenic" is under 1000, and at <500 you are severely susceptible to infection.) She'll be on precautions for a while, but we've been lucky that no one in the family has gotten sick, and we've become very good at washing our hands all the time.

We are starting to see a lot of hairs on her pillow the last 2 mornings. A lot of people have asked what she thinks about losing her hair. A couple of days ago I sat down with her and told her that because of her chemo, her hair was going to fall out. Her response was a very matter of fact, "I know." I guess kids do overhear more than you realize. She told me she'd have to wear some hats so people don't see her bald spot. I told her she can show people her bald spot if she wants and doesn't have to wear a hat, but she seems to want to. The social worker came in to talk about some hair pieces that fit under hats for chemo kids, but I declined it because I don't want her to feel like she should be ashamed of being bald. My mother also had a good point: when was the last time a 5 year old looked in the mirror? (Besides to see how green her tongue was after eating a popsicle!) She's not at an age where she's particularly self-conscious about her looks, which I think is a very good thing.