Jack

Dear Staff at the Children's Cancer Fund of America:

I am writing to introduce you to our family as pictured in the enclosed photograph.  I am John (Dad-44) standing in photo.  From left to right in the front are Pete (4), Emily (10), Matthew (6), Andrea (Mom-37), and Jack (13).  Jack is a bright, outgoing, athletic kid with many friends and younger siblings that all look up to him.  His athleticism is what led us to be blessed with an early diagnosis of his cancer.
One Saturday in May of this year, he volunteered to assemble the new trampoline we had recently purchased for the kids.  After several hours or work and with a little of dad's help, he enjoyed the fruits of his labor and got to spend a good portion of that afternoon jumping on the trampoline (front flips, black flips, etc.)  Later that evening he complained of pain in his chest when he breathed deeply.  Thinking is was simply a result of his recent arduous acrobatics on the trampoline, we chose not to worry about it at the time and see how he felt the next day.  Well, the next evening in church, his chest pain came back, so mom took him to the local emergency room while dad took everyone else home.

The next day, dad left for a business trip to California and mom got to take a surprise trip to Phoenix Children's Hospital (2 1/2 hours from home) as the x-rays and ct scan done the previous evening at the local E.R. revealed a mass in Jack's chest that required further study by specialists in Phoenix.  Well, you can probably imagine the rest.  Luckily, the tumor was about the size of an egg and neatly encapsulated just under the chest wall slightly to the left of his sternum.  Several hours of surgery and a few inches of rib later, he was tumor free but just on the threshold of the rest of his treatment.

It required several weeks, a team of really smart doctors in both Phoenix and St. Louis and many tests to eventually identify the tumor as an undifferentiated sarcoma.  This diagnosis replaces several intermediate "guesses" and eventually dictated 30+ weeks of chemotherapy with treatments about every 10 days to two weeks, depending on Jack's ability to recover adequately in between.  We hope to be hone with this regimen by the end of the year, yet face the possibility of additional chemo and/or radiation treatments.  Additional related tests and scans have all been negative to date, for which we are immensely thankful.

Upon your receipt of this letter, we will be approximately half way through this 30 weeks of treatment. It has been an eventful first half with surgery to resect the tumor, surgery to install a port-a-cath, surgery to fix the non-working port-a-cath, a couple of trips to the local E.R., one emergency ambulance trip from Flagstaff to Phoenix due to an infection that landed Jack in the PICU for a couple of days, getting a handle on what all the various medications do, and what medications to use to counter-act the ill-effects of the first medications, etc.

Our family lexicon has come to include many new words, concepts and places like “home-schooling,” The Ronald McDonald House, hydroxyzine, the hospital cafeteria, oxycodone, PICU, ondanzatron, mouth-care, the beeping I.V. machine, heparin, roommates on the second floor, blood counts, many nurses, many doctors, good I.V. spots and not-so-good I.V. spots, adavan, etc.

In spite of it all, we are extremely lucky and blessed. Mom has a very understanding boss that allows her to continue her full-time work mostly from home. Dad owns a business where his brother, Jack’s uncle, is his business partner and thus very understanding and accommodating about the needed time away for frequent trips to Phoenix Children’s Hospital, etc. Grandma and Grandpa have been outstanding in their support in helping to care for Jack and his brothers and sister. We have more sincere, standing offers of help, day or night, from family, friends and neighbors (some we didn’t even know until now!) than we could possibly take advantage of. We have hood medical insurance and great caregivers that allow for Jack to have come to believe is the best care possible. We realize that many families dealing with cancer don’t have the good fortune of all of these positive elements, and we are thankful for our blessings and feel deeply for those who lack them.

Our struggles are coping with the logistics of a relatively large family, treatment facilities that are 2 ½ hours away (especially with $4.00/gallon gas!), a treatment schedule that can change day-to-day based on blood test results, etc., two full-time jobs and the stresses of everyday life that everyone knows well. Our planning is day to day. Every once in a while we can plan almost a week ahead – though those well intentioned plans often go to pieces on day three or so. Yet, the sacrifices our family must make pale in comparison to the rough road that Jack himself must endure, and thus our load is light and our road traveled willingly when his is considered. As much as we’d like to, we can’t take on his pain, nausea or fear.

We are continually amazed by the many wonderful groups, organizations and individuals we’ve encountered in our journey thus far. Thank goodness for all the selfless, generous, caring people in the world of children’s cancer, and thank you for considering our family, and Jack especially, with your program.

Sincerely,

John R. Stalker and Family