From the beginning Mike and I talked about how one day we would like to give back to the Jimmy Fund Clinic and Dana Farber and Children's Hospital. Since we don't have deep pockets, building a new research wing is unlikely. However, we have just been invited to join the Pediatric Patient Family Advisory Council.
This is a group of doctors, nurses, administrators, bereaved parents, parents of children who have completed treatment, and parents like Mike and me whose children are still in treatment. We attended our first meeting last month and it was very interesting. The main function of the council is to make the whole experience at JFC better.
Stuck in a Moment
One of my favorite songs is "Stuck in a Moment" by U2. It begins, "I am not afraid of anything in this world. There's nothing you can throw at me that I haven't already heard." I thought that was true until October 12, 2006. During the first month of Charlie's illness, we survived on adrenaline, fear, and the unending support of all of you. I do feel less scared now. I hope we never have to face anything else like this again, but if something does happen I know we can handle it.
Luke, I Am Your Father
During Charlie's last lumbar puncture (spinal tap), his nurse, Mary, said the recovery room nurse had a tough time waking him up from the anesthesia. Mary just happened by, and knowing Charlie's love of anything Star Wars, she whispered to him in a deep voice, "Luke, I am your father." Charlie opened his eyes and said, "Mary, do you even know what episode that is from?"
Wisdom from Our Poet Laureate
A few weeks ago Charlie said to me, "Mum, I feel really weird. The whole inside of me feels really angry, but the whole outside of me feels really happy. I am all confused."
The following words are the happiest I have ever written: CHARLIE IS CURED!
He received his last dose of chemo at home the day after Thanksgiving. We are thrilled beyond words but I am also feeling a ton of other emotions that I didn't really expect: happy and sad, numb and exhilarated, confused and focused, hopeful and fearful, calm and anxious, relieved and scared, anchored and adrift.
How do you thank the medical professionals who saved your child's life? We have lived under the watchful eyes of some of the best doctors and nurses in the world. Moving away from that security is a scary thing. And there is an ever-so-slim chance of relapse.
Looking back, I am amazed that we are all sane. I took my cues from Charlie. Even on his darkest, weakest days, he somehow mustered the strength to carry on. He is the bravest person I know.