Make-A-Wish Trip!!

On our first visit to Dr. Joe’s office 2 years ago, Amy, the social worker, tried to cheer me up by telling me how we would be able to do a Make-A-Wish trip. I remember looking at her in utter disbelief wondering how my daughter’s eligibility to participate in an organization associated with children with life threatening illnesses was supposed to make me feel better. But, once the initial shock of Catherine’s diagnosis subsided, coming up with a wish actually gave us something fun to do. Dave and I felt very strongly that Catherine choose something that money couldn’t buy. To us, that meant a one-on-one with Derek Jeter and the rest of the Yankees. Selfish I know and Catherine wanted nothing to do with it. At this time so many of her friends were making the childhood pilgrimage to Disney World, and Catherine became interested. It was so cliché, a trip to Disney World, but it was her wish and we knew we would be going there eventually, so Disney it was. Well, we just came back and I can honestly say that no amount of money could have given us the experience of a Make-A-Wish trip to Disney World. Words that come to mind when I look back on last week’s trip: amazing, inspiring and humbling.
Of course we did all the typical Disney stuff – the Magic Kingdom, Animal Kingdom, Universal, and Sea World. And, in typical Dave/Theresa style, we were go go go. Although our kids are old enough to walk the parks, we knew we’d get more done with them in a stroller, so between that and our guest access pass, which enabled us to essentially cut every line, we covered a lot of ground each day. The kids really enjoyed it. If you ask Alex his favorite part of the trip, he’ll tell you the Goofy roller coaster, but I would add that he loved meeting all the characters (especially Spider Man). It was funny to watch how star struck he was each time we came across a character. Catherine would say her favorite part of the parks was the Peter Pan ride. I would add that she also enjoyed running around in the play areas at Universal and Animal Kingdom.
But Dave and I could have brought our kids to the parks on our own dime and we would have likely paid extra for fast pass access. What made this trip so special was where we stayed – Give Kids the World. It is a village in Kissimmee that is especially for wish families (their website is www.gktw.com). I strongly believe that the kids loved GKTW more than the parks. I don’t even know how to describe it – we ate in a cafeteria type building shaped like a Gingerbread House with tables more appropriate for kids than adults. There is a medieval style castle that is really an awesome play room on the inside. A carousel the kids could ride whenever they wanted. An ice cream parlor, a movie theater, a game room and miniature golf, not to mention a pool that is wheelchair accessible (they have wheelchairs that are made for the water.) Every night there was something fun to do: One night was Kids Night Out, Parents Night Off, basically a big ole’ playdate. We celebrated Christmas one night, complete with decorations and a visit from Santa. Our last night there was a Pirates and Princesses party. In the morning they had horseback riding and visits with the characters from the parks (Mickey and Minnie, Belle, SpongeBob). On the Kids Night Out, they did a Village Idol performance and Catherine actually got on stage and sang a song from the Little Mermaid!! She loved being stage – who knew?? Dave and I commented that we have not seen Catherine run, jump and play like that since her diagnosis. She had the energy of a “healthy” child that week.
Even more special were the people/volunteers who worked there – primarily retired people and kids from local colleges. Everyday I teared up a bit thinking about how selfless these people were to give up their time to try and make our stay memorable. This to me is worth more than any check we could write.
I decided when we went that I would not talk too much with the other families – for my own mental health if nothing else. The day before we left I had heard of some kids who had relapsed and it paralyzed me with fear for about an hour (literally paralyzed… I couldn’t move). I didn’t want to know people’s stories, I just wanted to enjoy my family. Of course I talked to a couple of people: one kid had the “boy in the bubble” disease. He has no immune system and a bone marrow transplant failed so he needs IVIG transfusions every month for the rest of his life. Another girl, from the UK, just finished treatment for a brain tumor. And then another family had a son Alex’s age who was born with a degenerative spinal muscular disease – this child couldn’t breathe, eat or walk on his own, so clearly this trip was more for his sibling. So many kids with severe disabilities – you didn’t need to talk to them to know what was wrong. It actually made me thankful for what we have (although I’d bet that these families wouldn’t wish leukemia on their kids so it’s always a case of the grass is always greener). But everyone at GKTW has a smile on their face and goes about their lives because it’s all you can do.

On a much lighter note, Dave can’t believe that the people of Florida have been so pivotal in choosing our nation’s leader.

I will try to post pictures when I finally download them from my camera.

Cycle 7 Begins!

Today marks the start of the last cycle! And actually, with the timing on this protocol, Catherine will finish her treatment before the Cycle should end. For the first time, I have actually figured out the number of days left - 75. Seems like a big number, but it will be here before we know it. My head spins at the thought. Today was actually the last lumbar puncture with chemo (she will get a lumbar puncture and bone marrow aspirate at the end of treatment to confirm her remission status). The last 2 LPs have gone so smoothly, but today's was a mess. Usually Dr. Farzana is at the office on Wednesdays and does Catherine's LP. These are the only days we see her and somehow her presence makes Catherine relax. Well, Dr. Farzana left for a 3 week trip to India today for her nephew's wedding. So, Dr. Joe, still quite pumped about the Giants Superbowl win, did the procedure. As I have said before, I never stay in the room, but I'm not far either. I could hear Catherine whining and saying, "you're on me!" (one of the nurse's roles during the LP is to actually lay over the patient to ensure that they stay perfectly still). Then for the 30 minutes that she had to lay flat, Catherine cried...the whole time. She has felt nauseous and had a headache, and been quite whiny the entire day. I must say I am whiny too - these days totally wear me out. I am ready for the day to be over!
Yesterday, Catherine asked me if the leukemia can come back after her treatment is done and if it does, will she have to take all this medicine again. Obviously I told her the truth which is yes it can come back and yes she would have to take the medicine again. What I didn't add that always races through my mind is that the treatment will be longer, stronger and come with a much lower cure rate. Thinking about it consumes me at times. Everynight I tell God, I can't do this again - I am not that strong. But then I think, is anybody that strong? No. As my friend who scheduled her breast cancer treatments around her infant son's open heart surgeries said, if God gives you what you can handle, then clearly he doesn't know me very well. So I try to calm myself down and just go about my business as usual.
On a happier note, the Make-A-Wish people came and threw Catherine an ice cream sundae party. I had 35 kids here and about 30 adults. It was so much fun and so special for Catherine and Alex. I hate that we even qualify for this, but it is going to be an amazing trip. They provide everything - transportation, lodging (we will be staying at Give Kids the World which is solely for wish families), and spending money. Not to mention the fact that we get to skip all the lines! We leave in 11 days so the countdown has begun.
That is about all for now. Things continue to move along as they should and hopefully they end as they should.
Thanks for checking in on us!