The Scariest Machine You’ll Ever See

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

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

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

Stem Cell Collection Begins

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

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

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

(Full Disclosure - I work for Univision)

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

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

Click here to read the rest of the article.

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

Super Sunday

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

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

Here are some pictures from the day.

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

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

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

Whole Lotta Nuthin’ Goin’ On

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

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

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

Hair Today, Gone Tomorrow

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

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

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

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

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.

I Don't Want To Miss A Thing

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream would never do
I'd still miss you, baby
And I don't wanna miss a thing
- Aerosmith, "I Don't Want To Miss A Thing"

When Annalise was first born, I used to listen to this song all the time. It pretty much summed up how I felt being a new father. Now, with Isabella in the hospital, I'm reminded of the song again and sadly it's under vastly different circumstances.

My New Year's Resolution is to not take any moments for granted, because you just don't know how much time you ultimately have. I don't know how many times the kids have "nagged" me to look at something and I was too "busy" with something else to pay attention. Looking back, what I was doing probably wasn't that important. Just today, I was playing around with Nathaniel and tickling him and he was laughing up a storm - and I sat back and reflected and was enveloped in the moment and I smiled. The other day, when Isabella was home and we were listening to some music, I picked her up and we began dancing. Again, I soaked in that moment and cherished it, and wished it would never end.

On behalf of our family, we wish everyone a healthy and happy New Year. We thank everyone for your continued support.

Prayers for Isabella

We know that there are many people out there praying for Isabella's quick and complete recovery and our family greatly appreciates it. Our parish, St. Thomas the Apostle here in Norwalk, CT is having a couple services to pray for Isabella.

The first is a mass for Isabella on Saturday, January 3 at 5:15 PM.

The second is a prayer group that will recite the rosary for Isabella on Wednesday, January 7 at 6:30 PM.

If you are in the area and have the time, feel free to stop by. They are located at 203 East Ave., Norwalk, CT 06855.

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Quick Monday Update

Isabella is still doing ok and her spirits are still up. Her platelet and hemoglobin counts came back normal, but her neutrophils (white cells) are still very low, so she is still susceptible to infections. In addition, she will need to receive antibiotics for 14 days to treat the infected port, so she will be staying on the Pediatric floor for a couple more weeks. Her next round of chemo will start just as the antibiotics will finish. This will further delay her rehab, but we are hoping that they will be able do some light rehab in her room. Finally, one of the side effects of the chemo is that Isabella is finding it difficult to swallow, so she has been eating and drinking very little. When she gets hungry, they do give her some pain medication so that she can eat.

Isabella Doing Much Better

Well after a few hours of worry for us, Isabella has been doing much better today. After yesterday's events, which Julianne blogged, Isabella had been feeling pretty crummy and hadn't eaten or drank anything. She also had a really bad nose bleed early this morning, which left a pretty big clot that's blocking her left nostril. But today, I brought Annalise, Nathaniel, and Grandpa in to visit Isabella and she started feeling better and better as the day went on. I'm not sure if it was the visitors or the medicine kicking in, but Isabella started eating and drinking a little and even played more cards with everyone. Her temperature and blood pressure have also been good, so now we're just waiting on tomorrow's blood tests to make sure that she is recovering from this last dose of chemo.

Even more exciting is that she has slowly been opening her right hand more and more. Up till now, she has been able to move her right arm and hand, but not really able to open her fingers to be able to grasp anything. She would use her left hand to open her right hand. She started doing it at home on Christmas day once in a while, but today, she's been really working at it, opening and closing her hand 10 to 20 times in a row. Her thumb and pointer finger still need a little work, but she should be able to get them to work with some therapy and more time.

And yes, hopefully, we should have some of the Christmas pictures up soon. I'm just waiting to gather them from all the cameras that were present.

Unplanned Admission

Roneil wanted me to give my perspective on what happened today. Isabella had a wonderful Christmas yesterday - aside from her disabilities, she really ran around like a normal kid most of the day. This morninng she was tired (we got back late), but participated in her morning classes. (No, the therapists don't even get a long weekend.)

In the afternoon, the PA came over to access her port and give her the scheduled vincristine dose after drawing labs. Within minutes of the PA leaving, Isabella started crying even more inconsolably (she should have been calming down by that point), and complaining of a severe headache all over her head. Then she began shaking all over. It was so bad, I thought she was having a seizure at first, but she was able to follow directions. Then she started vomiting. We were trying to calm her down, but anywhere we tried to touch her seemed like it caused severe pain.

By the time the nurse came in and got the resident, who saw her and called the attending, she was still crying and shaking, but so exhausted that she was dosing off in between screaming spells. We couldn't believe this was an exagerated anxiety type of response to having her port accessed (both other times it was a terrible experience - done as an "emergency" without numbing), because of how severe her symptoms were. The part that bothered me was that even as she was falling asleep, she was still shaking. Finally her nurse came back in to do her vitals, and her temp was 103.7!

Her oncologist came over from clinic within a few minutes and sent us right up to the inpatient floor. Her bloodwork had come back, and everything had dropped severely from 2 days ago - she was neutropenic (neutrophils 400), and on the border of needing platelet and packed red cell transfusions. The doctor's theory makes sense - her port was infected, but not causing any symptoms until it was flushed and pushed the bacteria into her bloodstream. That's why she was completely fine before the infusion, and it hit her like a ton of bricks a few minutes later.

I could tell everyone was nervous, because the nurse at Rusk brought her up without waiting for transport, and the nurse on the floor "stole" the antibiotics from the pharmacy without waiting for Isabella's name to be admitted into the computer (there was some kind of computer problem). I got nervous when they re-accessed her port and she didn't put up the usual fight - she barely complained. She's now on 2 "big gun" antibiotics, pretty much covering any bacteria you could acquire in the hospital.

Isabella perked up within an hour or two and is back to herself again. She took a long nap, and then we spent the evening playing cards. We're waiting to see if she'll need the transfusions tomorrow. How long she stays on this floor is still up in the air.

A Commitment to Fighting Childhood Cancer

Click the title to view an article that ran in today's New York Times about Dr. Jeffrey Allen. He's a neuro-oncologist and part of the team at NYU that is treating Isabella.

Julianne and I are utterly amazed with Dr. Allen and Dr. Sharon Gardner who is the other neuro-oncologist that we've been working with. This article basically confirms the hours that we expect they put in on a daily basis and wonder how they have a life outside of the hospital. In any case, we're grateful that there are people like them who are committed to treating and curing children like Isabella.

Back at the Hospital

We had a great Christmas day at home and have plenty of photos and video from the day that we will post later. Last night, we brought Isabella back to Rusk. Today, Isabella got her last dose of Vincristine, which now officially ends her first cycle of chemo. During the push through her port, Isabella developed a bacterial infection and immediately spiked a fever. She was just admitted to the Pediatric Unit where they are giving her antibiotics while they check her blood cultures to see exactly what could be in there. Right now, Julianne is with her and Isabella is feeling better.

Merry Christmas!

On behalf of the rest of our family, I would like to wish everyone a very, Merry Christmas and a Happy New Year. The last few weeks have been extremely challenging, and we have many more weeks ahead. I am positive we wouldn't be able to get through this without the tremendous support from our family, friends and community. It is amazing and truly humbling how some people who we hardly know display such compassion and selflessness.

Just like Thanksgiving, this Christmas will be different from the ones we've had before, but not as different. I will be taking Isabella back home in the morning and all the kids will be able to open their gifts as usual. And later that night, we'll take Isabella back to Rusk to continue her rehab. But once again, we are all praying for a miracle and that a year from now, we will be celebrating with a cured Isabella.

Home for Christmas Eve

The doctors have OK'd Isabella to come home tonight for Christmas Eve! She has completed her full day of therapy and we will be on our way home shortly. This will allow her to be part of our traditional Slovak Christmas Eve dinner.

Unfortunately, she is not allowed to stay overnight, so I will be driving her back to the hospital later tonight. Then, we will get up bright and early and go back home for Christmas day!

Isabella's Blood Count Improving

They did a routine blood count on Isabella today to check her white cell count. Her white cell count had been drastically lower since the chemotherapy, which makes her susceptible to infections. She has been receiving medication known as Granulocyte colony-stimulating factor (G-CSF or GCSF), which assists the body in regenerating her white blood cells. The doctors expected Isabella to have a low count until at least the end of this week.

Even before the doctors began the GCSF on Saturday, they had noticed that Isabella's white counts were starting to improve! Today, the measurement showed that Isabella is no longer neutropenic - she is still below normal, but her body seems to be recovering very well from the chemotherapy. She still has a little nausea, but overall, she's doing great. Her walking continues to improve, but her right hand will require more time.

She just has one more day of rehab on Wednesday (Christmas Eve), then she comes home for Christmas!

Isabella's Best Friend

Here is Isabella goofing around with her best friend, Imani, here at Rusk. They are wearing sunglasses that they received in one of the many goodie bags from contributions. Isabella loves playing with Imani, who is one of her roommates. When Isabella was in the pediatric unit for a couple days, Imani would ask us everyday if Isabella was coming back. And when Isabella did eventually come back, she was happiest to see Imani out of anyone and they immediately began playing with their toys.

Back at Rusk After a Great Day

Isabella is now back at Rusk after a nice, relaxing day at home. This was her first time home and out of the hospital in over a month. All the kids were excited to finally be home together. When we got home, we had a little lunch, the kids ran around, Isabella was getting a little too enthusiastic with her siblings so we had to calm them down a little. We played some video games (Rock Band) and listened to some Christmas music and danced around the living room. We took a nap, had some dinner, then played some more video games before coming back. It ended up being a typical Sunday at the Icatar household.

It was definitely nice to be home and feel a little sense of normalcy, even if it was just for a few hours. We'll have a couple days of rehab therapy as we wait for Christmas when we'll head home again.

We're Home!

We just got home from the hospital. Isabella couldn't stop smiling the whole ride home, she was so excited. When we got home, her brother and sister were also excited to see her. Nathaniel kept pointing to her and saying something (we think it was "Bella").

Coming Home!

Our string of bad luck continues as a noreaster is going through New
England trying to prevent us from taking Isabella home for the day,
but we're determined! I'm sitting outside the hospital now and
Julianne is bringing Isabella down and we'll be heading home. This
will be her first time being outside in over a month. Isabella will be
able to see the several inches of snow we got in the last few days,
our Christmas tree, Cleo our cat, and her fishes.

We'll be bringing her back early tonight, so we don't have much
planned for the day except a lot of sitting around and relaxing.
She'll be coming home again in a few days for Christmas. We should
have some pics posted later.

First Cycle Complete!

We just finished giving Isabella her last dose of Temodar and she really didn't make it easy. She threw up the first batch that she got, and fortunately, the hospital pharmacy was able to make her a second batch. With lots of patience and water, we were finally able to give her the entire batch with small squirts from the syringe (approximately 0.25 to 0.5 cc's per squirt). We had started with the first batch at 9:20 PM and she took the last squirt at 11:00 PM.

Earlier, they gave her the vincristine, and that went uneventfully as they just pushed it through the port in her chest. They also removed the access from the port, so she no longer has any tubes dangling from her. They'll have to re-access the port next week when she has another vincristine dose.

So round 1 is complete and we just hope that these drugs are doing what they have to be doing and that whatever is left of the tumor is reacting to the drugs.

We also just found out from the attending physician that they will allow Isabella to come home on a day pass on Sunday! We can't wait to have her home, even if it will just be for a day.

Things I Miss (Daddy Version)

I miss...

...coming home off the train and having the kids race over to see who could give me a hug first.

...going to Friendly's and "helping" the kids finish their desserts.

...sleeping in on Saturday mornings, only to wake up being crowded out of bed by all 3 kids (and the cat!).

...doing a triple-piggy-back with Annalise on my back, Isabella on Annalise's back, and Nathaniel on Isabella's back.


...finding Isabella sleeping in unique, precarious positions all over the house. My favorite is still when she fell asleep in bed with a book on her face!

...wrangling up the kids to go shopping at Costco or the mall. Of course, once we get to Costco, filling up on all the food samples.

...doing our "home-run handshake" whenever anyone on the Yankees hit a home run.

...going to Dave and Busters and spending $20 to win tickets on the arcade games. Annalise and Isabella would then spend 30 minutes trying to pick out a prize worth $0.50.

...being a good, ol' regular boring family...

Almost Done With This Cycle

Isabella had some problems taking the Temodar medication. This portion of the chemo is given orally, normally by capsule, but since Isabella can't swallow the capsule whole, they need to open it and dissolve it in water. Isabella had problems taking the medicine because it tasted so bad and she ended up gagging on it and vomiting it back up.

For the cycle, Isabella is supposed to take Temodar once a day for 5 days. She took it fine on Day 1 and 2 (Saturday and Sunday), but threw up Day 3 (Monday) and Day 4 (Tuesday). Since she basically missed the Day 3 and 4 doses, they decided to extend the cycle for two days to make up for it. Last night, Julianne discovered that if we put a couple drops of flavoring in the medicine and give Isabella a lollipop to suck on after taking the medicine, then Isabella is less likely to throw it up. It's been working fine so far since Isabella has been able to take Day 3 on Wednesday and Day 4 today and keep it down. She has one more day of Temodar on Friday and will be done with it until next month.

She also has two more doses of vincristine scheduled for this Friday and next Friday, but this is given intravenously so she shouldn't have any problems taking this. Just for completion's sake, the other medication that's part of the cycle is called carboplatin, and that is administered via IV drip over 4 hours on Day 1 and Day 2 of the cycle, so Isabella is done with that one for now.

Isabella has also been tranfered back to Rusk and just like before, immediately perked up and began playing with her friends again. She should begin her therapy sessions on Friday.

*** IMPORTANT ****

One of the side effects of the chemotherapy is that it reduces your white blood cell count which makes it harder for your body to fight off infections. Isabella's blood count has already dropped dramatically and she will soon begin receiving medication that will help her regenerate her white blood cells. So, not only does that mean that Isabella can't have visitors, but we also need to limit the visitors at our house to make sure that Julianne or myself do not get sick. So please call before dropping by and if you are sick or may even remotely be sick, please postpone your visit until you are sure you are not sick. They expect her blood count to be back to normal within a couple weeks.

Things I Miss

I read somewhere recently that after something so devastating as a cancer diagnosis, people learn to truly appreciate the small things in life. How true this is! Before Isabella’s hospitalization, I would have said, “Yeah, yeah . . .” But now I long for all those little moments.

I miss the constant commotion at home: the kids running after each other, dancing or singing with their shows, arguing over whose turn it was to play with Nathaniel, etc. Now there’s a different kind of commotion – extended family members coming and going trying to keep Annalise and Nathaniel taken care of and entertained, trying to keep everything at home in order, trying to plan who should do what for the next day.

I miss the “stressful” commute home from work: racing from the office to get Annalise and Isabella from the afterschool program just in the knick of time, throwing them in the car and racing down to Stamford to pick Nathaniel up at Lola’s house. We wouldn’t get home until 7PM, but one of my favorite times was sitting in traffic, singing the girls’ favorite songs with them over and over again. (Thank goodness for Sirius radio record and repeat!)

I miss the weekly trips to the library, desperately trying to find Annalise a new series of books to be interested in, while trying to keep an eye on Isabella in the beginning-reader book room, and running after Nathaniel as he grabs books off the shelves and makes a run for the stairs.

I miss our bedtime routine, including the girls’ last-ditch delay efforts requesting one last drink of water, one more back scratch, one more tuck in, and one more hug and kiss.

I miss sleeping in on Saturday mornings, only to wake up being crowded out of bed by all 3 kids (and the cat!).

All of those little things I used to complain about – I would give anything to have them back if that was all I had to worry about.

Not Such A Happy Monday

Isabella had a slight complication on Sunday and the doctors wanted to keep her another day in the Pediatric Unit. Isabella checked out fine medically this afternoon and we are trying to get back to Rusk as soon as we can. Hopefully, we can get back on Tuesday.

Isabella is also starting to feel a little nauseous from the medication. Her appetite is getting slightly affected and her digestion may also be starting to get affected. She also had the 3rd of 5 daily doses of Temodar. This is the only one given orally, instead of through her port, and unfortunately, she vomited both times they tried to give it to her, so they gave up and we will see how this affects this cycle of treatments. Hopefully, she will be able to take the medication tomorrow without vomiting.

Touching Moments

Isabella wrote a letter today:
“Dear family, when are you going to come and see me? I hope you come soon. (Heart, heart, heart) Isabella.”

The letter is really meant for her sister and brother. It was heartbreaking to read this, but it’s really difficult for Annalise and Nathaniel to visit more often. They were just here yesterday, but it’ll be another week before they are likely to visit again. Weekends seem like the only reasonable time to drag everyone in on the train and not feel guilty about getting home so late.

Tonight she asked when she was going to go home. I gave her the usual answer, “When your right arm and leg start working better.” Then I reminded her that we’re supposed to go back to rehab tomorrow morning. When she said, “That’s what I meant,” I realized that she’s now calling Rusk home.

First Cycle of Chemo

Isabella sailed through her first cycle of chemo. She had a dose of vincristine IV push, then a carboplatin infusion over 4 hours both days. For 5 days she’ll also take an oral med, Temodar, that has to be on an empty stomach, can only be crushed and mixed with water, and reportedly tastes horrible. She complains and cries about the oral med, but does take it because I’ve told her how important it is in helping her get better. She’s scheduled to get another dose of vincristine on days 7 and 14 as an outpatient.

Her only complaint was a tummy ache at times. And she really didn’t eat very well on the second day. But at least there was no vomiting. The doctor said in about 2-3 weeks we’ll start to notice some hair falling out, and then it all comes out within a couple of days. I haven’t warned her about it yet – I’m not sure how she’s going to react. (She might not mind - no more crying about combing out the tangles every morning for a while! And I can pull out some really cute hats that I have collected through the years if she wants.)

She really is used to hospital stuff at this point. When the nursing assistants come in, she offers them her arm for a blood pressure check, and then holds her hair aside for them when they check her temp (they use a temporal artery gauge). Her port is no longer so sore, and she even lifts up her shirt to help the nurse check to see if it flushes correctly in a nice, matter-of-fact way. Wow, all of this from a kid who used to refuse to take Tylenol!

She seemed to do well with the inpatient stay this time, too. She spent most of the morning in the playroom. A group “Bryan’s Dream” donated gifts to the kids today and she got this gorgeous soft yellow and orange flowered blanket. She was so happy with it that she had it wrapped around herself most of the evening while we watched TV.

So far, so good

Julianne has a couple blogs to upload later, but I just wanted to give a quick update. Isabella received a couple rounds of chemo over the weekend. So far, we haven't seen any noticable side effects. She has a couple more medications to take for three days. We're hoping to get back to Rusk (the rehab building) on Monday so that she can continue with her physical therapy. More later....

Chemo Begins

Isabella just received the first dose of chemotherapy at 5:10 PM. One of the medications was a straight push through the port, and the other is a 4 hour drip that will finish shortly after 9 PM. Then at 8 or so, a third medication will be given orally. We will do the same thing tomorrow night, then hopefully, go back to rehab at Rusk on Monday.

Here's an inspirational scene from Lord of the Rings and hope that the remaining tumor cells are treated how the orcs are treated.

Back to the Pediatric Unit

We just got transferred back to the Pediatric Unit, so we will be starting soon. Julianne and I have no idea what to expect. How much nausea will Isabella have? If and when will her hair fall out? The nurse says that everyone reacts differently so we'll just have to wait and see. More in a bit.

Official Official Diagnosis

After further analysis by the neuro-pathologist at St. Jude, he came to the same conclusion as the NYU neuro-pathologist and they completely agree that it is a malignant glioma. We are not even going to bother waiting for the Johns Hopkins pathology results. Isabella is scheduled to begin chemotherapy immediately, tomorrow, Saturday, December 13.

Isabella also had another MRI today and it showed that her brain stem is shifting back to normal (remember that it had been shifted by the original tumor). More importantly, it showed that the remaining tumor cells left in the stem were not growing at any noticeable rate. This is probably one of the first pieces of "good" news we've received since they removed the tumor. If the remaining cells had been growing at a fast rate, it would be a much poorer prognosis.

We're a little disappointed because the rehab doctor said Isabella was doing so well, that he was going to let us take her home on a "day-pass" on Sunday. Since she'll be doing chemo on Saturday and Sunday, she won't be able to go home now. But we are mostly relieved that we definitely now know what we are dealing with and know how we are going to treat it. We will still have many anxious moments over the next several months as we see how the remaining tumor cells react to the chemotherapy.

Emotional Rollercoaster

I am like a human emotional rollercoaster. You should see me – over the last three weeks, my emotions have changed like the wind.

It is so overwhelming to see my child in distress. I was terrified when Isabella became unresponsive when we first got to NYU. I was relieved to see her wake up from surgery to remove the tumor and speak. (They told us there was a chance that she would not be able to speak.) I was devastated when we found out the tumor was malignant and had spread to an unresectable area in the brainstem. I now feel a little bit better that there is a chance for cure with the Head Start protocol. My emotions vary by the day, sometimes by the hour. Here is just a quick example of how my mood changes.

Maya Manley, the founder of the Making Headway Foundation and a frequent volunteer visitor, came to see me one day in Isabella’s rehab. I was in tears as I told her Isabella’s story. She suggested I talk to one of their therapists. I got a call a couple of days later from the therapist. At the time, Santa had just visited Isabella and given her that precious computer which cheered her up so much. Also, the oncologist had just told me a story of a Connecticut child who had a similar cancer who participated in the protocol and is still recurrence-free 4 years later. So when I spoke to the therapist, I told her I was doing pretty well and didn’t need any help.



Two days later, after sitting with Isabella for 48 hours, watching her lay in bed refusing to cooperate or interact with anyone, I was a mess again. Maya happened to stop by our room, and it was pretty obvious to her what a wreck I was. After going home, and having a break, I returned to see Isabella happily back in rehab. Of course, when the therapist came by to see me, I was doing fine and again told her I didn’t need any help. Maya and the therapist must think they’re each talking to two different people!

Julianne Will Be Blogging

I told Julianne it is very cathartic to write things down and is very helpful as one of the ways to deal with this tragic event. It really is inspiring and comforting to know how so many people follow the blog and are genuinely interested. Several people have told me that they follow the blog every day. I convinced Julianne to try her hand at writing and she will be contributing to the blog to provide her perspective on everything going on. Up till now, what you have read on the events is based on my interpretation. I think it will be very interesting for everyone to read another point of view.

Santa Visits the Hospital

While Isabella was in the Pediatric Unit, Santa Clause made a surprise early visit to the kids. This was one of the few times that Isabella perked up while there, and who wouldn't if they were being given all sorts of gifts? Isabella got a bunch of gifts, but her favorite is a toy laptop that she got (wow, just like daddy!). It plays games and music. The video below shows her dancing to her favorite song on the laptop.

Isabella Back to Rehab

Finally, Isabella was discharged from the Pediatric unit and back to the rehab center at the Rusk Institute. Since we are waiting on confirmation of the second and third opinions, we've decided to postpone the chemotherapy, so there was no reason for her to be in the Pediatric unit. Plus, she was missing precious rehab time that we could be using to strengthen her right side.

Isabella is so glad to be back at Rusk because she was reunited with all the friends that she has made so far. While in Pediatrics, Isabella was very grumpy and would rarely cooperate with anyone which was very frustrating for everyone. She had been there since Friday, when she had the operation to put the port in her chest. Since Friday, Isabella has refused to walk or pretty much do anything until last night, when she finally started to walk around with my assistance. But today, when she went back to Rusk and met up with her friends, she immediately perked up, began smiling, laughing, and dancing. Julianne and I were so relieved because we thought it would take her a few more days to adjust.

Her rehab regimen begins again on Thursday, and hopefully, they could make good progress before we start whatever treatment we decide on. By the way, the pathology report from St. Jude should be back by Thursday, which will either confirm whether the tumor is a glioma (original diagnosis by NYU), or an ependymoma (new diagnosis by St. Jude). Either way, we have sent the required material to Johns Hopkins for a third opinion, in case the first two opinions end up not matching.

Isabella's Song

The song that Shira Weinberger used for the Family Photo slideshow is called "Isabella" by the Terrible Twos. You can find it at Amazon by clicking the link and download it for $1.29 or 5 Pepsi points.

If you didn't hear the song when you first saw the slideshow, I suggest you go back and watch it again and make sure you have your speakers turned up. It's a perfect song to go along with the slideshow.

Frustrations Setting In

It has now been three weeks since we first discovered Isabella's brain tumor, and what started out as a whirlwind has slowed to a frustrating crawl.

First of all, Isabella has been moved three times in the last three weeks (with one more back to rehab later this week). We already know that she has adjustments issues every time she moves to a new place, but she seemed extra frustrated on this last move from Rehab back to the Pediatric floor after her operation to put the port in her chest. She really has not been making much progress with her right hand, and she hasn't tried to walk since the operation since she's been sore. Not to mention that she's lost a few days of rehab because of the operation.

Secondly, the back and forth from Connecticut to New York City is beginning to take its toll. Juliannne and I haven't been together at home for three weeks since one of us has been staying at the hospital every night. We've been eating a lot of New York pizza and cafeteria food. Our parents and in-laws have done a great job keeping things patched together at home, but we feel bad basically neglecting Annalise and Nathaniel.

Finally, it's extremely frustrating to still not be sure what this thing is in Isabella's head and not being able to do anything about it. The delays in getting the pathology results and the second/third opinions is really driving us nuts. But although we do wish we could start treatment, we do want to make sure that we are treating the right thing with the proper method. In a way, it could be a good thing that Isabella had the fever that delayed the chemo, because it allowed us to get the second opinion.

Official Diagnosis (...or not)

Last week, we received the official diagnosis for Isabella's brain cancer:

Glioneuronal neoplasm with anaplastic features (which is a type of anaplastic astrocytoma)

There is a clinical trial that specifically treats these malignant gliomas in young children, called Head Start (Phase 3). The protocol for this treatment calls for 4-5 cycles of chemotherapy (4 weeks apart), followed by a final week of extremely intensive chemotherapy. That final dose is so severe that Isabella will require a stem cell infusion to assist her recovery since her white blood cell count will end up being very low. If necessary, we will then use radiation to kill any remaining cancer cells. The purpose of this trial is to eliminate or reduce the requirement to use radiation since radiation has several long term side effects affecting intelligence, growth, and motor skills.

Once we received the diagnosis, we sent the MRI slides and pathology results to St. Jude's Children Research Hospital in Tennessee for a second opinion. Today, we received a frantic call from St. Jude's to ask if we've started chemo yet, and we told them no. It was supposed to start today, but was postponed another day because of Isabella's fever. Apparently, the pathologist from St. Jude came up with a different diagnosis:

Vascular ependymoma (most likely anaplastic)

They need to run some more tests to verify it, which will take a few more days. As such, we will be moving Isabella back to the Rehab center so they can continue with her therapy.

Neither diagnosis carries a prognosis that is necessarily better or worse than the other, but this new diagnosis is significant because an ependymoma does not react well to chemotherapy and is instead treated with radiation. Because of this, we will be holding off on chemotherapy for now until we get the final word from St. Jude.

Unfortunately, we will now have to go for a third opinion, most likely to Johns Hopkins. Since the neuro-pathologist at St. Jude is a nationally recognized pathologist, we expect the findings to match with St. Jude.

You may ask how two pathologists can come up with such varying diagnoses? Well although there are roughly 3400 new brain cancer incidents in children every year, the type that Isabella has is extremely rare with about 50 incidents per year. Because of this, not a lot of people have experience diagnosing it.