I don't know where to begin......
Things are truly awful. Trying to find a silver lining in this one is most difficult.
I am cc'ing this to everyone so some of this will be a repeat for some of you.
Brian Warne, my sister Sara's 4 year old son, was diagnosed last Thursday with cancer at a hospital in Santa Rosa. That night he was taken by ambulance to U.C. Medical Center-Moffet Hospital in S.F. More tests were done and the type of cancer is Burkitts' Lymphoma-stage 4 cancer-the worst it can be. This is a very rare form of cancer--about 6 cases a year are seen at U.C. It is common in Central Africa. These cancer cells double every 16 hours!!
Brian has cancer cells in nearly every part of his body. It started with a lump on the outside of his head that went through the skull and grew towards his brain. This large lump pressed on his brain giving him migraine-like symptoms.
The good new is that 80% can be cured. This is day 4 of his first round of Chemo. He is a brave little boy and he is doing really well so far--a lot of pain, but somehow he is coping. He has to have spinal taps every other day. Those are the worst. This way of introducing the chemo by-passes the blood stream and takes it straight to the brain. Other days the chemo goes through a mainline that has been surgically placed in his chest. He will have this mainline for at least a year. It has 2 white tubes about 6 inches long hanging out of it. They have to be taped to his chest.
He does have cancer in his bone marrow--100% in some places, 0% in others. The cancer is in his kidneys and most everywhere else.
This cancer grows so fast that it must be treated most aggressively. So this Phase 1 of chemo will be folllowed immediately by phase 2. Each phase lasts 8 days--chemo daily. Phase 2 will be a nightmare, because all the doses will be significantly increased. Some doubles, others 5 times the first amount. This phase will cause him to be sick 24 hours a day everyday. He will get mouth sores so bad that he will have trouble swallowing-will probably not be able to eat. He will lose his hair and experience swelling in his face. Nausea, vomiting, pain everywhere will become normal. He will be given drugs, blood transfusions, and iv food every day. Already his nerve endings are so tender that his feet and hands hurt a lot. Morphine helps, but it only lasts about an hour.
Phase 2 starts Saturday. After the 8 day treatment, Brian will probably need 2 weeks in the hospital to recover enough to go home for 1 week and get his blood count up enough to return for a repeat of phase 2.
I have arranged through social services for us to stay in Family House starting Friday through Christmas. I am sure they will let us stay as long as necessary. Beds for parents in the hospital are hard to get and not very comfortable--conference rooms are turned into bedrooms, by pulling beds out of walls and encircling them with tent curtains. Family House is across the street from the hospital and it is wonderful. We have a bedroom with 4 beds.
Sara, David, Denny and I are all home for the 2 week holiday period. We will be living at the hospital and helping Stan and Sara care for Brian. Stan's brother Rick and his family are caring for Steven in Santa Rosa. Steven will visit regularly and sleep in Family House some nights.
Please pray for Brian, Sara, Steven, and Stan as we begin this 6-9 month treatment period. It will be a 5 year program.
I am very tired now. I returned to work today after being out for a week. I will be working everyday this week and going to the hospital after work. I will try to keep you updated as I get a chance.