Walking For Wishes

One of the hardest parts about this portion of the cancer journey is the lack of attainable milestones. There are three phases to Jack’s treatment regimen, and we’re in the third and longest portion – Maintenance. While Maintenance is supposed to be the least intense phase because the treatments are more spread out, they stretch out across two and a half years. Jack started Maintenance in October 2012, so our next milestone is…

March 15, 2015.

That’s a long way off. Right now it feels like the end of treatment will never come. It seems like we have an endless number of doctor appointments, medications, procedures, blood draws, and dressing changes ahead of us. And through March 2015 we’ll surely worry about fevers and infections and side effects and fatigue and keeping our jobs and paying bills.

Rather than focusing on the depressing difficulties ahead, we distract ourselves. One way to do that is to create other things to look forward to, which Jack has done through the Make-A-Wish Foundation. Last year he met with the Bay Area chapter of Make-A-Wish and submitted his wish to meet Lady Gaga (go check out his video!). We’ve been patiently waiting for his turn since.

Recently Lady Gaga had to cancel her tour due to her own health challenges. Not only are we sad to hear that she is having health problems, but we are bummed that the granting of Jack’s wish – a milestone we were looking forward to – will be delayed, as well. That wish means a lot to our whole family. It means hope and inspiration and excitement and happiness and light in the dark. It means some manner of relief, which is difficult to be found during a cancer battle no matter how many people offer support. I’m sure you can understand why we are a bit fixated on it.

With Jack’s wish being delayed and new waves of exhaustion settling upon us, we decided to distract and rally ourselves with a new goal: the East Bay Walk For Wishes. The Walk For Wishes is a 5k walk that raises money for the Make-a-Wish Foundation. The East Bay Area chapter hopes to raise enough funds to grant wishes to sixteen children – a total of $120,000.

Our team is called Jack’s Juggernauts and we are (at the moment) eleven people strong! Our team aims to raise $7,500, which is the average cost of ONE child’s wish. My personal goal is to get to $1500 and right now I’m only a little over $400 away from that. I know some very generous people!

Many of you have just finished your taxes and are either getting back refunds or bemoaning your tax bill. Either way – you can do yourself a favor for next year and get a tax deduction by donating to our walk. You don’t have to itemize for donations to count and, in many cases, your employer will match your donation.

If you would like to help us out in our efforts to rally our family and help out kids who are facing life-threatening medical conditions, please donate. Any amount helps.

Support Jack's Juggernauts!

Make A Wish, Little Monster

Last week I submitted the referral for Jack’s wish to the Make A Wish program. If you are living in a hole (one with internet access?) and are unaware of this program, it’s a charitable organization that grants wishes to seriously ill children. From what I understand, most of these kids want to go to Disneyland. Jack, being Jack and ever-unique, wants something very different.

At first, Jack said he wanted to act in a movie as Charlie (of Willy Wonka fame). I thought that was pretty interesting. His dad suggested meeting a football player, which Jack had absolutely no interest in. It was a few weeks later when he settled on wanting to meet Lady Gaga and become one of her “Little Monsters.”

I’m not sure what exactly first drew Jack to Lady Gaga. There were a few songs on the radio and he immediately loved them and protested if I tried to change the station. Then he began requesting that I play¬†Lady Gaga songs every time we got in the car. That led to asking to see her pictures (he declares that people are beautiful based upon their voices on the radio) and then a whole new level of fascination developed. Once he learned that she dresses up in crazy outfits (he thought the meat dress was hilarious), his artistic little heart was completely smitten. After all, Jack has dressed up as one thing or another – or just pretended to be some magical monster or alien – just about every day of his life. In fact his daycare provider quickly learned not to call him “Jack” upon drop off, and instead asked who or what he was that day.

So, one evening he and I were sitting at home hanging out. Jack was dressed as a bat and we were discussing his wish in between his eating everything in sight (he was on the steroid at the time). I figured I’d show him one of Lady Gaga’s music videos. Well, once he saw one, he wanted to watch them all! I sifted through the videos and picked the most kid-friendly ones (this does NOT include¬†Paparazzi!). After watching a half dozen of her videos, Jack decided he needed to make a video, as well, to go along with his wish!

Now, Jack is not very athletic. He was never the kid that swayed his diapered booty to music and he does not sing – nor does he allow most people to sing in his presence. Partially because he is noise-sensitive and partially because he gets incredibly embarrassed by grandiose displays. Up until this evening, I’d only heard him humming (but I wasn’t allowed to acknowledge it) and the only dancing he’d done was in my arms as a baby. Not to mention, he had already begun chemo and was generally low energy, sore, and pretty blah.

I’m sure you can imagine my surprise when I turned on some Lady Gaga music and found myself recording this low-quality video (the darkness is one of many reasons we left our apartment in the city) of a dance routine Jack came up with on the spot to go with his Make a Wish application:

We should hear back this week from the Make a Wish Foundation about when they’ll be out to interview Jack regarding his “one true wish.” I can’t wait!