Charlie is diagnosed with acute lymphoblastic leukemia (ALL) and undergoes two years of treatment at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. Below are excerpts from a series of emails that Caroline Rider wrote to her extended family and circle of friends.
Our Charlie has been diagnosed with leukemia. We know what a shock it can be to hear this. The type of leukemia he has is called ALL and it is the most common and the most treatable. The good news is that we live close to the one of the best children's cancer centers in the world, and Charlie has an excellent prognosis. He will be in Children's Hospital for at least a month. When he is discharged, he will be in remission. Once he goes home, he will return to Dana-Farber's Jimmy Fund Clinic once a week for two years.
Charlie is HOME!!!
After being told that he would have to be in the hospital for at least a month, the doctors say he is doing so well that he could go home. We are thrilled because we all get to sleep under the same roof again. We are also TERRIFIED because we have a long road ahead.
Charlie started to lose his hair this week. We don't have pets, but our furniture looks like we have shedding cats in the house. It was driving him crazy so he asked if he could get it cut. His Aunt Krista obliged with a backyard buzz cut. His hair is now only about a ¼ inch long, but soon he won't have any hair at all. The new look suits him. He has a beautiful round head.
Charlie is in remission! A recent bone marrow biopsy showed there are no cancer cells in his body. Alas, the doctors know from years of studying this disease that there are still some leukemia cells lurking somewhere. The crafty little devils are waiting for us to drop our guard so they can attack again. But we won't let them. That is why Charlie is in the hospital again – this time to get a massive dose of chemo.
Other than the first few numbing days after Charlie's diagnosis, the past few weeks have been the hardest. Charlie had nine Jimmy Fund Clinic visits in three weeks (four of them surgical procedures). I have never felt so bone tired in my whole life.
Charlie has not been his happy, charming self and that has been hard to watch. He has been very clingy, needy, whiny, angry, and at times in pain. I have found it difficult to get to know the other parents at the clinic because, frankly, I have a hard time wrapping my brain around the fact that my child is sick.
We continue to make weekly visits to the Jimmy Fund Clinic where every single person there is truly amazing. What a place! I don't know how they do it day in and day out, but they will all always have a special place in our hearts.
I find myself referring to situations as BD and AD (Before and After Diagnosis). Our life is certainly not what it was BD, but we seem to have found a sort of normalcy that works for us. Charlie is doing well … considering.
During the first few weeks, every time a doctor or nurse came in the room I really believed that they were going to say, "We are so sorry. There has been a huge mistake. Your child is perfectly healthy and you are free to go." But after six months it has finally sunk in that this is happening to us.
For a few weeks, Charlie had excruciating leg pain as a result of his medications. Once while his visiting nurse, Kathie, was here, Charlie was complaining about the pain. Kathie explained that it was probably the bone marrow regenerating itself. The next day Charlie said, "Mum, my bow and arrow are really hurting again."
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.
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.
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?"
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.
Next: Relapse and Stem Cell Transplant
Find out more about resources for children with ALL and other forms of childhood leukemia:
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