Hi Everyone,
I was asked about the treatment plan for John. Understand that every aspect of this depends on how John's body responds to treatment but I'll try to give you a general overview.
At the present time John is in remission. The goal is to keep him in remission until his new immune system (from Tim) can get strong enough to fight the leukemia. John is hospitalized this week to receive radiation to his lymphatic system and be treated with AGI to basically eleminate his immune system.
Beginning 8/18 John will be treated on an outpatient basis. He will need to go to Stanford every morning for blood tests and treatment for approx. 3 to 6 hours per day. John will receive his first infusion of Tim's stem cells on 8/24. John is required to live down here with a 24 hour caregiver for at least 100 days from transplant.
We are trying to set up a rotating schedule of caregivers since I can not be here the entire time. As you can imagine, this isn't an easy task. Just the logistics of this is a bit complicated plus each caregiver will need to understand and enforce all the guidelines for John's care. It's seems extensive at this time but I'm sure it won't be all that bad once we get to that point.
John will be on a special diet and living by an extensive set of rules. One of which is that he will be wearing a mask to filter his air for the entire 100 days. He is allowed to take it off while in his room if it has recirculated air. Also, he can't touch or be around dirt, flowers, fresh foods and many other things.
I hope this info. helps.
Tim is home and ready to come here for his second round of stem cell production and harvesting. He will begin the injections on Monday and will be "harvested" on Thurs. and Friday of this coming week. Many people wanted to be John's donor. Kevin, Chris and Tim were the best chance of a match and each of them really wanted to be John's donor. What a great family. I'm so proud of them. Tim has handled the painful side effects well. This week we will be in a hotel that has a jacuzzi. That should help with Tim's bone pain.
My goal for today is to figure out a plan for the next week or so, (transportation, housing changes etc.,).
Our caregiver rotation schedule will begin in earnest mid September as I will be returning to work. I work in a very unique school with great people. They have all been very supportive throughout this entire time.
John and I have been so blessed with each of you. Thank you.
I better sign off for now and get busy.
Love,
Sandie