Sunday, October 18, 2009

Get your motor runnin'...

I have been meaning to post a recap of Andrew's Make-A-Wish trip, but it is hard to separate the details of the trip itself from the overall Make-A-Wish experience. I cannot say enough about this organization and how humbled we are to have had Andrew's wish granted by them. Therefore, I am simply going to post a copy of the letter that we sent to our Make-A-Wish coordinator and the Make-A-Wish organization upon our return:

Maria (and Make-A-Wish),

We just got back from Andrew’s Make-A-Wish trip and I needed to write to let you know what an incredible job you and the organization did and how perfectly Andrew’s wish played out. From the beginning, when Andrew’s Wish Granters came to our home to get to know him, understand his interests and, ultimately, learn his wish, we knew that there was an attention to detail and a desire to make this something truly special and unique for him; but nothing can quite prepare you for how moving and impressive it is when you experience it firsthand. All expectations were exceeded.

It is important that I go through this item by item, because everything and everyone was “above and beyond” and worthy of mention. Andrew’s wish began with a ride to the airport, but this was not just any ride, it was a ride in a white stretch limousine with a driver (who was extremely courteous and kind). Andrew and his sister, Lucia, were ecstatic over the “long car with the lights in the ceiling.” Frankly, our trip could have started and ended there and they would have been thrilled, but we were just getting started…. Our American Airlines flight to Miami was smooth and enjoyable and it was a surprise bonus to be greeted in Miami by a Make-A-Wish volunteer, who was there simply to offer us a friendly face and point us in the right direction as we picked up our baggage and headed for our rental car. At Avis to pick up our rental car and, again, at the Courtyard Marriott, it was heartening and humbling to notice how the respective representatives became more hospitable and engaged as they recognized that Andrew was on a Wish Trip. Put simply: Make-A-Wish brings out the best in people.

Certainly, that is what I witnessed the next day at Andrew’s wish, which was to meet his favorite racecar driver, Tony Kanaan, and see an IndyCar race. We were met at Homestead-Miami Speedway by yet another Make-A-Wish volunteer, Lissette, who was the definition of “trooper” and stuck with us throughout a very long, hot day of car racing. Lissette saw to it that we received our credentials, made it into the racetrack, interfaced with the track media representatives and kept us company. Homestead-Miami did its part, too, in the form of Ryan and Natalie, the media representatives there, who did more than take care of us—they went well out of their way to make sure that Andrew’s experience was perfect and complete. Last, but by no means least, I cannot say enough about Tony Kanaan himself, who was accessible and charming and spent more time than he had to give answering Andrew’s questions, signing autographs and posing for pictures. He topped off the visit with an invitation to Andrew to join him on the podium, should he win the race. Ultimately, he did not win (though he ran an exceptional race), but he saw to it that Andrew made it into the Winner’s Circle regardless. He was a true gentleman and, though I personally do not know much about IndyCar racing or follow it, I can say with certainty that he has fans for life in me and my family and we wish him only success.

Sunday was also a perfect day for us, but in a different way: Obviously, Make-A-Wish’s purpose is to address those kids with life-threatening illnesses. But, there are non-ill siblings, whose lives are impacted nonetheless by their sick brother or sister. Certainly, that has been the case in our house, where we have been struggling with the “collateral damage” of Andrew’s illness and subsequent treatment, as it has been inflicted upon Andrew’s sister, Lucia. With our day off on Sunday, we were able to grant Lucia’s “wish” by allowing her to plan her ideal day in Miami. For her, it was simple: A day at the beach as a family—no more, no less. So, we spent our entire Sunday at the beach, playing in the water, building sand castles and collecting shells. Oh, and getting REALLY sunburned. But, that’s a small price to pay for that kind of quality time.

Our return to Los Angeles on American Airlines was equally as smooth and uneventful as our departure and was followed by our pick-up and ride home in our head-turning limousine. In short, it was the perfect trip and I cannot think of one thing that we would have changed or that could have been better. We—I think collectively and individually—are so grateful to you and the Make-A-Wish organization for such a profoundly beautiful gift and experience. You do exceptional work and we will sing your praises for quite some time to come. Thank you, again.


Sincerely,

Paul Filippone
Dad to Andrew Filippone, Wish Recipient

And here are a few parting photos:







Wednesday, October 7, 2009

Fish, fish, got his wish!

Andrew will receive his Make-A-Wish this weekend, as we travel to Miami to see the final IndyCar race of the season. Apparently, this is the championship race and the points competition is ridiculously close, so everyone's season comes down to this. Pretty exciting.... AND, he also gets to meet his favorite driver (of the 7-Eleven car), Tony Kanaan. Truth be told, I can't remember if Andrew's exact wish was to go to an IndyCar race or to meet his favorite driver, Tony Kanaan, but the two seem to go hand-in-hand, so he picked up a twofer.

I want to take a moment to heap some praise on Make-A-Wish and acknowledge what an incredible organization it is and how dedicated the volunteers there are. It and they have been amazing. From seeking us out, to coming to meet Andrew, getting to know him and learning his interests, and then organizing and personalizing and, ultimately, granting his wish--it could not have been done better. It's a humbling thing to experience: The time and energy and attention to detail that went into making sure that Andrew's wish is just right.... I encourage you to support the Make-A-Wish organization and/or your local chapter. They are out there really making a difference in a lot of kids' lives and they deserve our support.

As we gear up for our big Make-A-Wish weekend, I should also mention that we are only just now starting to breathe this week, as it has been scan week, which is always stressful and full of anxiety. Or as I saw somewhere else today: Scanxiety. So far, though, we only have good news to report: Clear CT scan, clear bone marrow, and half of a clear MiBG scan. We have to return tomorrow for the additional MiBG scan, so we're not totally signed off just yet, but we're feeling reasonably good. Oh, and by the way, Andrew's hemoglobin this week was 8.6, which is still ridiculously low overall, but the highest he has been in months (maybe years?), so we were pretty thrilled with that.

In fact, treatment begins to space out a bit now--clinic visits once a month and scans every 3 months--so we had the final discussion with our doc to have Andrew's port removed. His surgery will be scheduled for next week or the following. This is good news and it is progress. The port is the last evidence of his active treatment, so we are eager to get rid of it. The timing is important, too, as flu season is upon us and, if Andrew were to keep the port and develop a fever, then we would have to be admitted into the hospital for antibiotics to ensure he didn't have an infection via the port. Taking the port out means that, if he develops a fever, well, it's just a fever. Of course, the downside to all of this is that, from now on, for blood draws and scan weeks, etc., whenever they need blood out or contrast or whatever in, they have to poke him. No more easy access. I suppose that's the price of progress....

Paul