Done with Chemo, Going Home Tomorrow

Isabella just finished up her last dose of chemotherapy and we are scheduled to go home tomorrow.  She has started to feel a little nauseous, but hasn’t vomited yet.  She also seems to have been hit by the chemo a little harder this time around and is pretty weak.  We’re hoping that this weakness is due to chemo effects and not tumor progression, but we’ll know for sure at her next MRI.

Another Round of Chemo

Isabella’s blood test today showed that her counts are pretty much recovered and back to normal so we will be starting another round of chemotherapy tomorrow (Tuesday).  Hopefully, we’ll be home on Sunday.

The picture below was taken at our local aquarium.

Need Your Help to Sign a Petition

Last year, I wrote about a new device that uses a helmet to send electrical pulses to kill brain tumor cells.  That device was approved in Europe, but not yet in the US.  That device is now going up for approval to the FDA and they are looking for support from you and me to provide compelling reasons for the FDA to approve.  One of the huge benefits of this device is that it doesn’t have the nasty side effects of chemotherapy, such as vomiting and neutropenia (low blood counts making the patient susceptible to infection and fevers).  FDA approval is one of the steps required for this to be covered by insurance companies.  Currently, the treatment costs $10,000 to $15,000 per month.

The link to the petition, along with some supporting articles is below.  The petition is all online, so besides giving a little bit of information about yourself, shouldn’t take too long.

http://www.virtualtrials.com/activism.cfm

Novocure NovoTTF-100A device is up for FDA approval!

We need you to submit your thoughts on the approval, and help us get a lot of responses!

Al Musella, DPM, President of the Musella Foundation, will be one of the patient representatives giving input to the FDA committee, and needs your permission to speak for you - as well as your thoughts to present as a petition. The more people we can get involved, the more effective our presentation will be.
About the NovoTTF-100A: this is an external device - electrodes are applied to the scalp and plugged into a control panel. (You can cover it with a wig or hat!) The device emits an electromagnetic field that interferes with the ability of the cancer cells to divide. I know it sounds like science fiction, but it has been shown to work on cell cultures, mice and people with cancer. If you already know about the device, skip to the questions way below. Otherwise, please take the time to look through the following articles. We will accept negative comments, but only if you have read these articles first.

http://www.virtualtrials.com/activism.cfm

Back to (the new) Normal

Many cancer families use the term the “new normal” to describe how the everyday things in their lives have changed.  After Isabella finished her radiation treatment and showed a few clean scans, we settled into a “new normal” routine as a family.  We knew we could never go back to the way things were before Isabella’s diagnosis, and we knew we had to make the best of our situation.  This new normal included daily nutritional supplements for Isabella, a vastly overhauled diet for the family (lots more natural and organic food), scheduled occupational and physical therapy, anxiety every time it was time for an MRI, and so on.  And for a few months, it was nice to return to normal, albeit a new normal.

Unfortunately, when Isabella’s cancer returned, we immediately got thrown back into the whirlwind of frequent doctors and hospital visits.  We made several trips to Boston, Washington DC, and Philadelphia for consultations.  We would be at the hospital for a week at a time for chemotherapy or for neutropenic fevers.  We had fallen out of our routine.  Even simple things such as eating dinner as a family became a challenge.

However, for the last week or so, we have been back into a sort of routine.  Since Isabella’s blood counts are still slightly depressed, our doctor has suggested we delay this next round of chemo until next week to give her body more time to recover.  Physically, Isabella is doing great and she’ll be able to finish out this week at school.  I have been able to go to work and actually get into a groove to get stuff done.  So even though it’s just temporary, it has been nice to be back to our new normal.

Enjoy these new pictures!

Isabella reads to a dog at a “Read to Rover” event at the local library.

Isabella takes a sip from her “happy cup”.

Isabella and Roneil play some drums on Rock Band.

Nathaniel (and his chocolate goatee) and Isabella try to give their meanest look for the camera.

And finally, Nathaniel gives Isabella a kiss after she gave him a Valentine’s Day card.

There’s a Monkey In My Chair

Isabella has been in school all week, except of course the two days off because of the snow/ice storms.  But when she is out, her desk does not sit empty.  We found this program called “There’s a Monkey In My Chair” that provides a big stuffed monkey that sits in Isabella’s chair while she is out due to treatment.  “Charlie” participates in the classroom activities, and usually one of the classmates is in charge of taking care of Charlie and reporting back to Isabella.  This allows Isabella to keep in touch with her classmates while she is out.  Some of the reports back to Isabella are really cute:

“Charlie went to art but he did not do anything.  He was a little lazy. But he was listening great.”

“Charlie was a good monkey today.”

“Charlie learned about pennies, nickels, dimes, quarters, and half dollars today.”

“Charlie ate his banana at lunch today.”

“At gym, Charlie didn’t run because he didn’t have shoes.”

Unfortunately, Charlie will have to take Isabella’s place again next week.  Our doctors have suggested that since Isabella did not have any severe reactions during this last cycle and that her neurological symptoms have not gotten noticeably worse, that it would be worth another shot for chemo.  After this round, we’ll do another MRI and see what’s going on in there.  After that, we still have no idea what’s next, but we do know that we can’t do this high dose chemo forever.

But Isabella still has another day of school left for her to enjoy before having to go through the chemo again.

Isabella’s Art Work To Be On Display!

As you can imagine, there’s a lot of sitting around and waiting at the hospital.  During that time, Isabella spends some time drawing.  One of her drawings will be on display in a New York City art show that will exhibit art work from sick children.  The exhibit will be on March 13.  Details in the announcement below.  If you’re in the area, stop on by and meet a famous artist!

http://www.artworksfoundation.org/express.shtml

Express Yourself is a creative and performing art exhibition that features the works of children and young adults suffering from chronic and life-threatening illnesses and their siblings.

Express Yourself provides children with the opportunity to be publicly acknowledged for both their struggles and their strengths. In a safe environment, filled with families, friends, healthcare specialists and art therapy patrons, these children sing, dance, recite poetry, play instruments and stand proudly by their works of art.

The process of preparing for the Express Yourself event provides these children with a much needed creative outlet that serves to reduce their stress and anxiety, decrease attention to their pain and normalize their hospital experience.

The exhibition provides all participants with something to look forward to and work towards, taking the focus away from the pain and sorrow of the illness. The event also provides patients and families with social opportunities to interact with other children and families in similar situations and take comfort in shared experiences.

 
Express Yourself - New York
Sunday, March 13, 2011
Kimmel Center for University Life
New York University
60 Washington Square South
(between La Guardia Place and Thompson Street)
New York, NY 10012
Directions
1:30-5:00 p.m.
Performances begin at 3:00 p.m.
Participating Agencies:

• Bellevue Hospital Center
• Blythedale Children’s Hospital
• Brookdale University Hospital and Medical Center
• The Children's Hospital at Montefiore
• Elizabeth Seton Pediatric Center
• Incarnation Children's Center
• Initiative for Women with Disabilities: Young Women's Program at NYU Hospital for Joint Diseases
• Komansky Center for Children's Health at New York Presbyterian Hospital/Weill Cornell Medical Center
• Maimonides Infants and Children's Hospital of Brooklyn
• The Mount Sinai Kravis Children's Hospital
• New Alternatives for Children
• NYU Hospital for Joint Diseases
• NYU Langone Medical Center
• Raymond Naftali Ambulatory Center
• Steven and Alexandra Cohen Children’s Medical Center of New York

If you are a healthcare agency interested in participating in Express Yourself, please call us at (201) 608-0146.

If you would like to submit artwork or perform in our next show, please call us at (201) 608-0146 or submit a contact form.

Home Today!

We got the go ahead to go home and are all now home and resting.  Isabella is still neutropenic (low white cells), but since the counts are rising and she hasn’t had a fever in a few days, they said we could go home.  Of course, we have the normal precautions such as very limited visitors and frequent hand washing, and we have to administer antibiotics for a couple more days.  But, it’ll be especially nice to have everyone home and sleeping in our own bed without tubes and monitors beeping and nurses running around.

Quick Update

The first couple of days Isabella was in the hospital, she had a pretty rough time.  Besides generally feeling bad with the fevers, she also felt a good amount of pain, from what we suspect is some gastrointestinal infection.  The pain had actually gotten to the point where we had to give Isabella morphine to ease the pain.  The doctors have not been able to pin down exactly what might be causing the infection, but they are hitting her with a bunch of different antibiotics.

Isabella has improved pretty well over the last couple of days.  She has not had a fever in a couple days and her blood counts have crept up.  She has also eaten and drunk (or is it drank?) much better than when she was first admitted to the hospital and her pain has subsided a bit.  So our doctors say that if her blood counts keep improving, she may be able to go home on Wednesday.  (Coincidentally, we’re expecting yet another snowstorm here in the NYC area when we hope she’ll be discharged!)  We’ll continue the antibiotics at home, but that’s better than being in the hospital.

So we hope that her immune system continues to improve so that we’ll be able to go home on Wednesday, even if it means going home through the snow.  But in the ultimate act of confidence, I brought all my stuff home today when Julianne came to relieve me of hospital duty.  I hope I don’t jinx us!

The picture below shows Roneil trying to catch some rest while Isabella and Nathaniel play.

Spiked a Fever, Back to the Hospital

Unfortunately (but not surprisingly), Isabella spiked a fever today so we are back at the hospital.  This is standard procedure since her white cell count is so low.  Isabella hasn’t been feeling too bad the last few days since she’s been home from the hospital, and even today, she wasn’t so obviously sick.  But towards the end of the day, she started acting a little grumpy and felt warm and when we took her temperature, she definitely had a fever.

So we’ll be at the hospital for a few days while they pump her full of antibiotics to help fight off any infections.  They’ll do blood cultures to try and determine if the infection is bacterial so they can use the appropriate antibiotic.

With any luck, we should be home by Tuesday or Wednesday.

Simply in Awe

Isabella just got home from school.  That’s right.  The day after coming home from the hospital after five days of intensive chemotherapy, Isabella wanted to go to school.  This will probably be her last day of school for at least a couple weeks as we expect her blood counts to bottom out within the next couple of days.

Everyday, Isabella finds a new way to amaze us, and on some days, she finds multiple ways.  For instance, the last couple days in the hospital, Isabella was too weak to really walk, but when we left the hospital, she walked all the way from her room to the parking lot.  Today, we thought Isabella would only have enough energy to spend a few hours at school and we were fully expecting a call that said she wanted to come home.  But not only did Isabella spend the whole day at school, she also finished an entire OT session afterwards.  And she wasn’t done yet.  After dinner, we went to a furniture store for an hour where she walked all over and even walked up an entire flight of stairs, something she couldn’t do just a few days ago.

She is doing so much better than after the last round of chemotherapy which included the same set of drugs.  At this point last time, she didn’t have enough energy to move from the couch or chew her food.  And although she had a bit of a suppressed appetite a couple days ago, she’s eaten much better the last two days and has not had any nausea yet.

We don’t know whether the chemo is working or not, but Isabella is certainly trying her hardest.  I know she’s frustrated at not being able to do what she used to be able to do just a few short months ago.  Whether it’s climbing stairs or writing her name or just simply talking, nearly everything has become a struggle for her, but she continues to try.  And while she’s willing and able to try, we’ll be there alongside her. 

She has truly become a huge inspiration.

Finally Back Home!

So we finally got Isabella home after spending most of the day in New York City.  We were planning on leaving around noon, but her blood counts were low.  They gave us the option of either getting a transfusion today or coming back to the city tomorrow, so of course we opted to get the transfusion today.  Plus, the kids favorite clown, Looney Lenny stopped by in the afternoon to entertain everyone.  Isabella and Annalise had a great time and both showed great enthusiasm and participated with the magic show.

We also ended up eating dinner at the hospital and finally left around 7pm.  It’s all worth it since we don’t have to go back in until Tuesday (unless Isabella develops a  fever).

What was also nice was the New York city streets weren’t too bad after the snowstorm.  Connecticut was a mess after we got 2 feet of snow, but at least the highways and the City were cleaned up and made the trip a breeze.

Anyway, here are a couple pics from the last couple days.  The plan for the next couple weeks is to try to keep Isabella from developing a fever which would require us to stay at the hospital for another week.  We’ll also probably do another MRI in a couple weeks to see what’s going on in there, then decide what the next course of action is.

Roneil cleans off the car after the blizzard.

Annalise and Nathaniel build a snow slide off the car.

Annalise stands on top of a snow pile that puts her taller than the deck.

Isabella raised her hand for practically every question that Looney Lenny asked!

Nathaniel, still with his clown-phobia, wouldn’t even look at Looney Lenny.

Finally, this picture was from a while ago, but we call it “The Anna Lisa”.

Chemo Update

We’re now more than halfway through this round of chemo and thankfully, Isabella has not experienced any side effects from the chemo yet.  We’re having the same issue that we had the last time, that is, because they are hydrating her heavily through the IV, she has the go to the bathroom every hour.  But she hasn’t felt any nausea yet and her appetite has been really good.

We have two more days of chemo left and we are hoping to be discharged from the hospital on Thursday.  The pending snowstorm on Tuesday/Wednesday should make trying to get home real interesting as the area is expecting a foot or so of snow.

In anticipation of the snow, here are a couple more pictures from last week’s snowfall with the kids having some fun in the yard.  I hope we’ll be able to get home to enjoy the snow.

Update on Upcoming Treatments

Isabella’s MRI yesterday didn’t show that the tumor is any smaller, but it also didn’t show that it had grown significantly so our doctor thinks that it is worth it to try another round of chemo.  We were fully expecting that the MRI would show significant growth and that we would stop any further treatment.  So although we will have another rough couple of weeks coming up with the chemo, we were relieved that the scan was “stable”.

We also decided to start the cycle on Saturday which allowed Isabella to go to school today.  Ironically, because of the snow storm hitting the northeast, it’ll end up being a short day since school will be dismissed early.

So although Julianne and I have been pretty bummed the last couple days, we’ve been trying to have some fun.  A couple nights ago, we played hide and seek around the house.  Here are a couple pictures from that.

Annalise and Nathaniel look for Isabella under the couch.

They still can’t find Isabella.

There she is under their nose the whole time!  I can’t believe she stayed still and quiet the whole time they were looking for her.

It took the kids a long time to find Roneil.  Can you spot him in the picture?

Upcoming Treatments

Happy New Year everyone.  After Isabella’s blood counts showed improvement to a satisfactory level last week, we made an impromptu trip to Vermont to visit Julianne’s parents.  We spent a quiet New Years up there before heading back down to CT on Sunday.  Isabella was scheduled to have another blood draw on Monday, then if the levels were at normal levels, would begin a second round of chemotherapy on Tuesday.  This also gave Isabella a chance to have a day at school, which she was very excited (and nervous) about.

Unfortunately, Isabella’s platelet counts were still a bit low to start chemo.  So our doctor told us to wait a couple days to allow the platelets to recover further, have another blood draw on Wednesday, then expect to start chemo on Thursday. 

In the meantime, we told the doctor that we noticed that some of Isabella’s symptoms have gotten worse, which worried us all.  Again, we changed plans and instead of doing a blood draw on Wednesday, we will be getting an MRI on Thursday (they originally didn’t have an MRI scheduled until after this second round of chemo).  They are most likely checking to see if there is any tumor progression that is causing the worsening of the symptoms.  If that is the case, they will most likely not proceed with this round of chemo because they wouldn’t want to subject Isabella to the severe effects of the chemo with little to no benefit.  If the tumor does show at least stable, then we will proceed with the treatment.

One bright side to all this is that Isabella will be able to spend a couple more days at school, which she really enjoys.  The picture below shows Isabella and Nathaniel taking a walk with Grandma and Grandpa.

Christmas Highlights

Isabella’s white counts have climbed so she’s no longer neutropenic (low white counts that make her susceptible to infections), but her platelets count is low.  This means we’ll have to go into the City tomorrow for a platelet infusion, but that should be it for this round.  We’ll have to discuss with our oncologist what the next steps are, but it won’t be for another week or two.

In other news, the snow came a day late to give us a white Christmas.  Oh well.  That didn’t stop us from having a great Christmas.  Here are a bunch of pictures and a video from the last couple of days.  Click on the picture to see a larger view.

Annalise in front of the festively lit Empire State Building.

Isabella laughs as she wears her reindeer antlers.

Annalise and Isabella help decorate the door with snowflakes.

Here we are for our traditional Christmas Eve dinner of pierogies, fish sticks and green beans substituting for peas.

Even though we didn’t have any time to shop, Santa came by with lots of gifts for the kids.  This also included some handmade, custom stockings for everyone in the family!

Nathaniel wears his new tool belt.

Isabella poses with her favorite new toy, a remote control walking puppy she named Snowflake.

Annalise made this cool ornament at school.  It has a transparent picture of her inside the ornament.

Nathaniel and Isabella venture out into the snow before the blizzard got really bad!

Annalise and Nathaniel pose by some of the large snow piles in our yard.

And what else are you going to do with all of that snow?  Well build a snow fort, of course!  Here’s a video tour of our snow fort!

Merry Christmas and a Happy New Year from our family to yours!

Merry Christmas!

Thanks to everyone for all the wonderful support you’ve shown.  I hope that you are all able to spend time with your loved ones and enjoy this blessed time with each other.  From our family to yours, we wish you a very merry Christmas and a happy and healthy New Year!

Going Home Today!

Isabella's counts have crept up enough for us to be discharged today! They "topped off" her platelets this morning and will be boosting her with some antibiotics soon and I will be driving in to bring her home shortly. The antibiotics will continue at home for a few days while she still has low white counts. We'll also go back into the City tomorrow for a blood transfusion (for low red cells), but at least we'll all be able to sleep in our own beds tonight!

Now the tricky part is to prevent her from spiking a fever or getting another infection during the holidays.

 

Update – 6:56pm

So we’re all home and settled in.  Here is a picture of Isabella from the hospital last night after she heard she was going home today.  Up until then, she hadn’t had much reason to smile so this was nice to catch.

Here we are at home playing Scrabble.

Update from the Hospital

So we are now through day 4 in the hospital. Isabella's blood culture test reveals that she does not have a bacterial infection, meaning that we do not have to do a standard course of 10 days of antibiotics. We're not sure what was causing her fevers, but it was most likely viral, and thankfully, she hasn't spiked a fever in over a day now. So our doctors now tell us that in order for us to be discharged, Isabella's white cell counts need to go up (otherwise, she would most likely get infected by something and be back again). The good news here is that her counts are creeping up ever so slightly, so we're hoping to only be here in the hospital for a couple more days.

Up until today, Isabella hadn't been eating much. She hasn't been vomiting, but she has felt nauseous and had little to no appetite. So Julianne and I decided that we would let her eat whatever she wants, regardless of the low-carb diet. Today, Isabella ate a good amount, including pancakes, pizza, and lugaw (which is a Filipino rice soup that my mom made), which we were encouraged by.

Unfortunately, we are noticing some worrisome symptoms from Isabella. She continues to be very weak physically and she can only walk a few steps at a time. She's also having problems chewing some foods so we're sticking with some of the softer foods. She is also having problems talking and communicating, and she's displaying much frustration from not being able to communicate how she is used to. Now we're not 100% sure whether these symptoms are due to chemo or to tumor progression - our doctors say it may be due to either and we just have to wait a few days to see if the symptoms subside.

So for now, we're still taking things one day at a time and we are looking forward to being home soon.

Save Sebastian

I recently wrote about our neighbor, one of Isabella’s classmates, who is also battling cancer.  He was diagnosed with leukemia and requires a bone marrow transplant, but unfortunately, none of his family members are matches.  This Sunday, December 19, they will be holding a bone marrow drive in Norwalk, CT.  What better gift to give this holiday season than a gift that can potentially save a life?  The process is simple, all they do is swab your cheek, and takes just a few minutes.

If you can’t attend this drive, visit the DMKS web site where you can find a local donor drive or request a kit where you can swab yourself and send it back in.

Here is the announcement.

Help Save Sebastian and Others!

Date:

Sun Dec 19, 2010

- Norwalk, CT

Sebastian is a 7 year old who has a long list of his favorite things. He loves the color red, the Wii, hot cooked shrimp, cookies and ice cream; Lady Ga Ga, the Yankees, chocolate cake, lollipops, monster trucks; fireworks, soccer and baseball. Most of all Sebastian loves his Daddy. He wants to grow up to be just like his father, but Sebastian has leukemia, and his life may be cut short unless he receives a transplant.

“My little boy is tough. Nothing stops him. He gets his fingers pricked a hundred times, must swallow pills every day, endure painful biopsies, but he does not complain or cry. He has the will to fight in him!” says Sebastian’s father. “My family prays and prays for a match.”

BECOME A LIFESAVER!
BONE MARROW DONOR DRIVE:
St. Thomas the Apostles Parish
203 East Avenue
Sunday, December 19th
9:00 am - 3:00 pm
At the gymnasium located in the parish

Back to the Hospital

Isabella woke up with a fever so we took her back to the hospital. The last few days have been fairly quiet and uneventful. Isabella has been home from school. We picked up her new foot brace on Monday and she got a new pair of sneakers yesterday.

So this is very disappointing that we have to head back to the hospital but it wasn't completely unexpected. Isabella's followup appointment yesterday showed that her white cell count has bottomed out so she is susceptible to infections. Hopefully, we'll only be there a few days and be back home in time for Christmas.