Our Daughter has been diagnosed with leukemia. We know what a shock it can be to hear this. The type of leukemia she has is called ALL and it is the most common and the most treatable. The bad news is that we live close to the one of the best children's cancer centers in the world and no money to start up the treatment, and she has an excellent prognosis. She will be in Children's Hospital for at least a month. When she is discharged, she will be in remission. Once she goes home, she will return to clinic once a week for two years.
After being told that she would have to be in the hospital for at least a month, the doctors say she is doing so well that she 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.
She started to lose her hair this week. We don't have pets, but our furniture looks like we have shedding cats in the house. It was driving her crazy so she asked if she could get it cut. Her Aunt Krista obliged with a backyard buzz cut. Her hair is now only about a ¼ inch long, but soon she won't have any hair at all. The new look suits her. She has a beautiful round head.
She is in remission! A recent bone marrow biopsy showed there are no cancer cells in her 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 She’s is in the hospital again – this time to get a massive dose of chemo.
Love and War
For a few weeks, she had excruciating leg pain as a result of his medications. Once while his visiting nurse, Kathie, was here, she was complaining about the pain. Kathie explained that it was probably the bone marrow regenerating itself. The next day she said, "Mum, my bow and arrow are really hurting again."
During Her last lumbar puncture (spinal tap), her nurse, Mary, said the recovery room nurse had a tough time waking him up from the anesthesia. Mary just happened by, and knowing her love of anything Star Wars, she whispered to her in a deep voice, "Luke, I am your father." Charlie opened her eyes and said, "Mary, do you even know what episode that is from?"
Wisdom from Our Poet Laureate
A few weeks ago she 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."
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 July 30th, 2019. 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.
Life's a Party
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 I need you all to keep her alive with your love and donations.