Dear Madeline,
You continue to amaze everyone. You're two and a half, and you are determined to bend the world to your will. You are opinionated, talkative, growing like a weed, and developing every day. Life is (mostly) good! God is good!
You're doing so well that mom and I managed a post-Christmas weekend escape. For the second straight year, you and Josie had a blast hanging out with Grandma Kathy and Grandpa Joe - and with Aunt Beth when they needed to subcontract the labor. I got quite the reminder of all that we've endured when a cancer mom whose 8 year old daughter is approaching the end of treatment for acute lymphoblastic leukemia (ALL) - she was diagnosed a month before you - emailed me and exclaimed how unfathomable the notion of ever taking another trip without her kids was. The idea of ever being able to pick up the pieces and rebuilding and happily leading a "normal" life was utterly foreign to her (it won't be for much longer, I assured her).
Still, life in survivorship is not perfect. You exhibit some symptoms of peripheral neuropathy from time to time (a known side-effect of the
Vincristine, and we're keeping an eye on it), and the doctors are a bit concerned about your blood pressure (on the high side of normal limits). I don't know if this is something to worry over yet. The first high BP reading came within minutes of your radiology appointment, CT scan, and being pumped full of contrast via IV. The second high BP reading came when you were in to see the pediatrician for an ear infection. These seem like things that would temporarily elevate anyone's BP, but you'll one day observe that a medical school diploma is not hanging on a wall in our house. If you have persistent high blood pressure, the medical concern is that this is a
sign of trouble for your remaining kidney. We'll see. Your oncologist told us he wanted to refer us to a nephrologist, but we haven't heard anything since then. I supposed we'll find out in April when you visit at your next oncology clinic visit.
In between now and April, I'll be saying good-bye to all of my hair again. On March 3, 2013, I'm participating in my 2nd
St. Baldrick's Foundation "Baltimore Heroes Event" to raise money to find cures for kids battling cancer and to find new, better ways to help kids deal with survivorship issues after they've completed cancer treatment.
I am astonished by the utter lack of commitment to find cures and to improve the lives of survivors. Almost 75 percent of kids who are treated for cancer and survive will have chronic health problems by the time they reach their 30s and 40s, and more than 40 percent of kids who will survive will have severe or life-threatening conditions. Heart problems, vision problems, hearing problems, lung problems, infertility, nerve damage, and
even new, different cancers caused by the very treatment intended to save kids lives. To think that the end of cancer treatment is only the beginning of a potentially tough life. It's not good enough. Knowing that scary long-term effects of the chemotherapy and radiation treatments might arise over the next several years, it nags at me. No amount of faith, or hope, or trust can ever completely extinguish the fears that a parent of a childhood cancer patient in treatment or survivor will wrestle with.
I am astonished because while the federal government provides the whopping majority of childhood cancer research funding, only 4 percent of the government's entire cancer research budget is current devoted to research the entire range of childhood cancers.
I am astonished because pharmaceutical companies make almost no investment in new drugs because, let's face it, when childhood cancer is "rare," it's hard to turn a profit and demonstrate return on investment to shareholders.
I am astonished because the round-up of the premier cancer-oriented non-governmental organizations and charities send their dollars almost exclusively to research adult cancers and support adult patients.
I am astonished because kids with cancer get crumbs, because the last "new" drug to combat childhood cancer was brought to market in the 1980s, because when our government, our drug companies, and our major charities have the opportunity to show us how important childhood cancer research is to them... well the message is heard loud and clear, and the message is sickening. What's that saying used by a lot of adults? Money talks and BS walks?
So I will shave my head to raise money for research. I walk to to raise money for research. I am determined to make a difference. And you know what? It
does make a difference, a big difference. Virtually every dollar raised goes right back into the research. And last year, research funded by efforts just like mine led to a breakthrough and an immediate, nationwide change in how every kid with ALL is treated. It wasn't a new drug, but rather how and when the drugs and other treatment methods were administered. I do this for you, Madeline, and for all kids with cancer. I do this not merely as a simple symbol of my support for you what you've already been through, but because it is a symbol of how much you matter, how much your future matters, how much I believe in the vibrant future that you so richly deserve.
Love,
Daddy
