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Charlie returns home but remains in isolation for a full year as he recovers from a stem cell transplant. Because his body is very vulnerable to infection, his parents are given a long list of things he cannot do, such as go to indoor gatherings, eat in restaurants, or have friends over.
When we go back to the Jimmy Fund Clinic for checkups we see Dr. Anu Narla, who has been Charlie's doctor since the beginning. For Charlie and Anu, it was love at first sight. We love Anu for so many reasons, but the most important is because of how hard she has worked to keep Charlie alive and because she is such a strong advocate for him. Even as she tearfully delivered the news to us that Charlie had relapsed, we were confident that she would leave no stone unturned in finding a new cure for him.
We have Anu to thank for something else. She sent Jorge Fernandez to us. Jorge is a psychosocial worker at Dana-Farber, and never was a person and a job more of a perfect fit. Jorge has helped us to put the impossibly scary into perspective and he calmed us down when we were really freaked out.
Every once in a while the isolation gets to me and I'll announce to Mike that I will be spending the next day he has off at the mall, by myself, for retail therapy. It is not the purchases I make that make me feel better (although that doesn't hurt), it is just getting out of the house and interacting with people who have no idea what we have been through. Being home alone with Charlie 24/7 has made me a little cuckoo.
Back in October, when Charlie was hospitalized for an infection in his central catheter line, he was put on several antibiotics. One day, one of the doctors on duty was running through a list of possible side effects of the meds. When she finished she said, "That's just something to keep in the back of your mind." I sighed and said, "The back of my mind is getting full."
Just as the transplant itself was easier than we anticipated (not that I ever want to repeat it), the isolation period was also easier than we thought it would be. If Charlie wanted to play with friends, it had to be outside. During the first couple of months we kept the kids' friends at bay, but eventually it was like old times, and we had lots of boys running around in our yard – even in the dead of winter. When the kids got cold they would hang out in the garage and I would bring them thermoses of hot chocolate.
We also became experts at finding outdoor activities, even if it meant walking on the beach in February. We had outdoor birthday parties in November and March, thanks to our patio heaters, as well as Thanksgiving and Christmas cocktail parties on the patio. It is amazing the things you can do outside, year round.
Well, it's official! After a long year of isolation, Charlie no longer has any restrictions or precautions. He can now do whatever, go wherever, or eat whatever he wants (subject to parental approval, of course).
We celebrated by going out to dinner. We ate in a busy restaurant and Charlie ordered his first fountain drink in more than a year. Later we walked to a local bakery and ate cannolis, another formerly forbidden delight. Perhaps the best part about the end of isolation is that we can now have our friends and family in the house again. On Saturday morning all three boys called their friends and said, "Come on over."
It's hard to believe, but four years ago today Charlie was first diagnosed with cancer. He turned 8 last week, so for exactly half of his life he has been battling cancer or dealing with the repercussions of the various treatments. I am thrilled to report that Charlie is doing GREAT! To look at him you would never know the hell he has been through. He is happy, healthy, smart, and really enjoying life. He loves school, and friends, and baseball, and everything that 8-year-old boys are supposed to love.
So, my dear friends, parting is such sweet sorrow. Writing these updates has been a lifeline for me, and I will miss sharing them with you. But I am grateful that there is no longer a need to keep you informed of our life with cancer. Instead I hope to stay in touch with you all "just because."
Next: The Rider family looks back
Find out more about support programs and other resources for children and their families at Dana-Farber/Boston Children's Cancer and Blood Disorders Center: