Jake Mcguire is Phat Tuesday's 2008 PMC Pedal Partner.
Jake was diagnosed with Acute Lymphoblastic Leukemia on July 26, 2006, 3 days before his 6th birthday. Our world as we knew it disappeared on that day and we entered a new world that we really hadn’t thought of much before. We felt like time stopped as we were admitted to Children’s Hospital in Boston and almost immediately began chemotherapy. We had to cancel Jake’s birthday party that weekend and thought that it was the end of our summer and life as we knew it.
Unbelievably that wasn’t exactly the case. Yes, our life would never be as it was before he was diagnosed but we began to understand a new normal. A life of blood counts, temperature checks and medications. Life became very unpredictable and Jake’s health would change on a moments notice. We could never plan too much in advance. The constant worry does take a toll and if it weren’t for the amazing support of our family and friends we may not have gotten through that early time. Sleep began to be a commodity that we wish we had more of. Jake also has a 4 year old sister, Brenna who was longing for attention by this point and that was very hard to juggle. However, for each bad day we had he probably had at least 2 decent days and that was encouraging for us.
Jake took his diagnosis all in stride. Despite being pumped with horrible poison that was supposed to put him in remission, he got up everyday and was a typical kid as best as he could be. For a child who had never had blood drawn before this diagnosis, he showed us bravery that we never knew was there. From surgery for his port, to blood transfusions and chemotherapy side effects he continually amazed us in that his biggest concern was what craft they were doing in the playroom that day! He began to make friends within his new cancer world with fellow patients and constantly charmed the nurses, doctors and hospital staff. And his little 38 pound body was as much of a fighter as his spirit. He amazed the doctors with how well he was tolerating the chemo and was able to go home on Day 9 of Induction therapy when most kids stay for at least a month. He again made the record books when he did not have to be re-admitted to the hospital for fever for the rest of Induction which almost never happens. As we moved over to outpatient treatment at The Jimmy Fund at Dana Farber, his charisma continued. He again made more friends of the patients and staffs, which have now become a huge part of our lives. And don’t forget this is all during aggressive weekly chemotherapy, painful procedures and the loss of his hair. Although we have had many struggles with his oral medications and port accessing, moments after it is over he moves on and the old Jake emerges ready to play or deal with the next challenge.
That fall he entered 1st grade a different child. He looked different and I’m sure he felt different. But he never once complained about it. Instead he proudly would remove his hat and say, ”It is just because of my medicine and when I’m done with it my hair will grow back” so matter of fact. We as parents were always more bothered by him being different then he was. His determination to keep up with his classmates was inspiring to all. He was weaker and more tired then they were but it never deterred him from trying his best and thankfully his friends never cared he was different, instead they supported him fully. His spirit is truly infectious.
Jake is now finishing second grade and is turning 8 this summer. His hair has returned and his strength is improving. Throughout the past 2 years, Jake has endured weekly chemotherapy, around 12 spinal taps and multiple daily oral medications. He has had a few setbacks and has been hospitalized for illness twice, once for a virus and another for pneumonia. He spent a total of 30 days in the hospital the first year. But amazingly he has never missed a treatment cycle and has tolerated 150% chemotherapy dose for 9 months now and has not been hospitalized since May 2007. He will finish treatment in August 2008 after 25 months of continuous chemotherapy. This journey has been very difficult and challenging but within this tragedy have blossomed many blessings! Jake has taught us the true meaning of strength as have all of the other children we have met who are also battling cancer. The stories we now know are heartbreaking and inspiring at the same time. We have also been amazed by the kindness of family, friends and strangers alike. Jake has over 1000 people registered on his website from all over the country, many whom we have never met and they check in on him daily. Now that is a support system. Cancer brings out the best in everyone. We have witnessed ordinary people doing extraordinary things to make this world a better place.
For Jake, the 5 year cure rate is around 80% and we are immensely grateful for those odds. We are hopeful that he will be cured and we will never see this beast again. Thank you for letting us introduce you to our amazing survivor and for what you are doing to support Dana Farber and their crusade to find a cure for cancer. We are honored to be paired with Phat Tuesday and look forward to meeting you all and cheering you on this summer.
Kim, Mark, Jake and Brenna Maguire
