Two Trials

We celebrated Maddie’s 5th birthday on Sunday surrounded by friends and family at our cozy, snow-covered farm in Vermont.  ”Blissful chaos” is how I would describe the scene.  We had snow forts and sledding outside, while inside the house was buzzing with little girls playing dress-up (thank you, Nana and Cindy, for all those great costumes) and trains being built on the dining room floor.  Thirteen little kids can make a lot of noise and a big mess, and Maddie was leading the charge.  All the while, I was thinking to myself how happy I was to hear all that noise and see the messes being made.  That’s what kids do, and it was great to see Maddie being a regular kid.  We had a party last year when Maddie turned four.  Our great friends at Chewonki put on an amazing puppet show for Maddie and some friends (thanks, Lauren!), but Maddie felt so crummy that she sat in my lap most of the time sucking her thumb.  This year’s experience was how I envisioned a kid’s party should be.  Of late, Brad and I are continually grateful for Maddie’s good health.  We joke that aside from the leukemia, she’s an incredibly healthy kid.  And frankly she doesn’t let this leukemia thing slow her down anymore.  While we consider our family “a well-oiled cancer killing machine”, we are occasionally brought back to the reality that this is still a monumental task that we are tackling and our fortunes can turn on a dime.  For example, Maddie recently had to take a chemo “holiday” because her blood counts (specifically her absolute neutrophil count) were dangerously low.  During that time, she was at higher risk for developing infections that would land her immediately in the hospital.  Fortunately, the chemo “holiday” enabled her counts to rise and she didn’t get sick during that time where she had little ability to fight off any bugs.  We secretly appreciated the break from the daily medication regimen, but at the same time hoped that her counts would quickly rise back up.  It is a delicate balancing act; we give her enough medicine to keep any cancer cells knocked out, but not too much to knock Maddie out.  Generally, we find this phase of the treatment to be much more predictable and consistent than the first several phases.  Since the medicines are the same from day to day and month to month, Maddie’s physical response to them is pretty much the same on a daily basis.  That’s not to say that she and we do not have little struggles.  She is bothered by canker sores in her mouth and rashes on her face and chest (side effects of the chemo meds).  Her enthusiasm for taking her nightly meds waxes and wanes in no sort of predictable way.  But even considering these little struggles, we consider ourselves incredibly fortunate that Maddie is doing so well physically and emotionally through this journey.  Overall, her prognosis is very good and we have even started to look forward to her 6th birthday next January when we hope to be finishing her treatment.  I doubt that we will ever say “good-bye” completely to cancer; it will always be a part of our lives.  The possibility of its recurrence will always linger in the back of my mind, but I look forward to the day when it becomes an even smaller piece of our daily lives.I just want to leave you with a few quotations from Maddie.  Sometimes looking at life from a kid’s point of view can help us put our own lives in perspective….Once a month Maddie goes to school on the day before her treatment with her port accessed, and inevitably kids ask her about the tube that is taped onto her chest.  I asked her what she tells the kids when they ask about it.  She said, “Oh, I just tell them it’s my tubey because I have cancer.”  Yep, that’s right, that’s Little Miss No-Big-Deal talking. I had a doctor’s appointment last week to meet my new primary care physician.  Maddie came with me.  When the doctor asked me if I had any medical problems in my family, Maddie piped up immediately, “I have cancer.”  I think he was taken aback and I don’t think he believed her at first until we actually talked about her leukemia at the end of the visit.Finally, Maddie said the other day, “You know, Mom, I just love my new hospital (Dartmouth-Hitchcock), but I also really miss my old hospital and clinic (Maine Med and Maine Children’s Cancer Program).  Can we go back and visit my old hospital and clinic sometime?”