Making Headway Family Fun Day

The Making Headway Family Fun Day which was rained out the previous week finally took place on June 28. The event was held at the home of Making Headway co-founders Ed and Maya Manley in Westchester County, New York. The event lived up to its name as we had tons of fun along with dozens of other families that are either currently going through brain cancer treatment or have gone through it. There were several activities tables setup for the children and plenty of goodies for all the children (cancer kids and their siblings). Best of all, there was a heated pool where Annalise, Isabella, and Nathaniel spent most of the afternoon. Click on the pictures below to see a slideshow.

View Full Album

Updates Soon

I have a bunch of pictures and videos that I will be posting soon (hopefully tonight).  We’ve been pretty busy lately even though the kids are now are “vacation”. 

Some Awesome News

We finally got the results from Isabella's MRI from Saturday and they show that there is "marked improvement" in tumor size. This is great news, especially considering that the previous couple MRIs showed no reduction in size of the tumor. We haven't seen the actual images yet so we're not sure how much is left and where it is, but we're remaining cautiously optimistic. At this point, we are still scheduled for radiation later this summer, but we will still discuss with Isabella's oncologist if there could be any changes in treatment. This news will certainly help the summer days go by more happily.

Not So Busy Weekend

So the rain ended up drenching the tri-state area and ruining our plans for the weekend.  After Isabella’s MRI on Saturday, we were planning on walking around all over New York City, perhaps hitting the Central Park Zoo.  On a nice day, a walk to Central Park would be nice (about 30 blocks) but because of the heavy rain, we didn’t want to walk all the way up to the Park.  Instead, we ended up going to Bryant Park (about 12 blocks away), doing some shopping along 5th Ave., and walking by the Empire State Building.  That’s about all the kids could take in the rain and cold before begging to go home.

All the rain on Saturday caused my baseball game on Sunday to be cancelled, and on top of that, the Making Headway Family Fun Day was also cancelled, so we had nothing planned for Father’s Day.  So, instead, we hung around the house and played in the yard.  We also broke out the golf clubs for the first time all year and went to the driving range.  Below are some pictures from our weekend.

Here is Annalise in front of one of the many bakeries at Grand Central Terminal.  It took us a while to pry her away from the window.

We bought a cake from Juniors bakery and brought it over to Bryant Part.  Here the girls are trying to stay warm and dry while enjoying the cake. Nathaniel looks sharp in his first baseball hat, a nice Yankee hat that we got from the Yankee Clubhouse store on 5th Ave.

Here are the three golfers ready to tear up the driving range. Isabella has her own bag and clubs.

Annalise, Isabella, and Nathaniel each wait their turn to hit.

Here’s a quick video of Isabella taking some swings at the driving range.

Busy Weekend

So we have a pretty busy weekend coming up. Isabella is scheduled to have an MRI on Saturday morning, so we'll drive into the city to have that done. On Sunday morning, I have a baseball game in the morning, then in the afternoon, the Making Headway organization is having their annual Family Fun Day. We've heard that in the past, President Clinton attended the party, so we're excited to see what luminaries may be present. Of course, this is all dependent on the weather cooperating as we are expecting rain this weekend.

Bunch of Updates

So we've had a nice and quiet week at home. Isabella has been doing very well. I've been going to work and Annalise is finishing up the school year. Because of the stem cell transplant, Isabella's immunity system will be compromised for a few months, and they suggest we stay isolated for at least the first month. They will gradually get less strict as time goes on, but this means that Isabella will not be able to go to school again until the fall. So since there's not much new stuff to report, I thought I'd post stuff that I meant to post a while ago, but since I didn't get the chance, will put them all together now.

 

This is Isabella at the last day of school.  This is the attendance board where each of the kids put their pictures in the “At School” or “At Home” sections.

Here Annalise and Isabella show off their artwork at the school art show.  The first one shows Annalise and Isabella under Annalise’s painting called “Stormy Mountains”.  The second shows Isabella’s drawing.

   While at the hospital, we decorated Isabella’s wall with lots of her drawings and other art work.  If you zoom into the picture, you can see a picture that Isabella’s classmates made for her, some mosaic tiles of fairies, and a bunch of bunnies.  The calendar shows a different drawing each day showing Isabella in her treatments.

Finally, here are the kids enjoying a nice warm day with some bubbles!

WE'RE HOME!!!

So after almost 3 hours of the worst traffic that NYC and I-95 could throw at us (the rain certainly didn't help), Isabella is now home! And just in time for us to enjoy what is predicted to be a terrific weekend weather-wise.

And if you thought Isabella had a big smile in the picture below, you should have seen her smile when she walked through the door!

Since Isabella is still immuno-compromised, we have no plans for this weekend (except for a baseball game for me). So we'll just do a lot of nothing and enjoying the sun.

Day +11 Steady Improvement

As expected, and as you can tell from the picture, it's Day +11 and Isabella is starting to feel a lot better. It's been a while since she's felt good enough to smile, so it is definitely a relief to see it. All of her blood counts are good. The only thing we need for her to do is to start eating more and we can then go home. We hope to be able to go home on Friday, or on Saturday at the latest. We've only been here about 3 weeks now, but it has felt like forever and I know Isabella can't wait to get home. By the way, the picture above was taken after she completely destroyed me in Uno, leaving me with 16 cards in my hand!

Fred's Team

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

Adlar's Fred's Team Site
Make a Donation

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

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

Day +9 Update Plus What Next?

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

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

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