Doug’s Story

Site created on May 10, 2018

On June 14 Doug will receive an allogeneic stem cell transplant (a transplant using a donor's cells) at Stanford Medical Center. With posts and photos on this page, we'll keep you informed about his schedule and status, and provide links to information in case you want to learn more about the process.  At the bottom of this post are links to clear and brief descriptions of Doug's very rare blood disease, called myelofibrosis, how stem cell transplants work, and how stem cell donors are found.

Timeline:
June 3: We move in with our amazing friends, Roz and Wally Naylor, who live in Portola Valley, five miles from the hospital.
June 4: Doug begins a 5-day radiation treatment to shrink his spleen. This is an outpatient procedure and he'll come home to the Naylor's every day.
June 9: Doug is admitted to Stanford's special transplant center. He begins chemotherapy treatment that will strip him of his blood system - including immune system, bone marrow and blood cells. This prepares him for the stem cell transplantation.
June 14: Stem cells from an unrelated donor (see more info about him/her below) will be introduced through a port in Doug's chest. It is done all in one day and then he is returned to his private room.
June 14-?: Doctors test and observe Doug closely to see when stem cells begin to mature, multiply, and rebuild his blood system. This can take from 2-4 weeks.
End of June: When Doug's system is back in operation, he moves back into Roz and Wally's house for three months of observation, during which time he'll go to the hospital every other day. He'll be required to remain within a 30-minute driving distance from the hospital. Doctors will be monitoring how his body is adapting to the new cells. There's a danger of Graft vs. Host Disease, and doctors will be prepared with an arsenal of treatments to nip any disease attacks in the bud.

Donor:
Several of you have offered to donate your stem cells. That is so very kind of you! There's a strict protocol for stem cell donation that's managed through BeTheMatch.org. (Read more at the link provided below.) Doctors sought a 10-point match, and they found three. The stem cell specialist, Dr. Andrew Rezvani, chose one, and that person agreed to spend the extra days it takes to get his stem cells harvested and delivered to Stanford. (Read about the process below.)

Visits:
So many of you have offered to visit, and that will be absolutely wonderful for Doug when the time is right! Doctors say visitation depends entirely on the patient's condition, fatigue and desire. So we'll just see how Doug is doing as he goes along. In the hospital he can have limited visitors, but the doctor said he may be too tired to see anyone. On the other hand, he might crave visitors! (Which do you think....!?)

Communication:
Of course, he'll love to interact in any way that he can, and there are a bunch of ways to do this: Send videos, use Skype, Facebook, telephone, text, or What's App for phone calls, video calls; send letters (what are those....?); send photos; interact with him on the Doug Read Summer Camp Facebook Page we've set up; or any other way you can think of being in touch.

Caretaking Help:
At some point we'll set up a calendar of visits for those of you who want to come see Doug over the summer. I may not set that up until sometime in June.

Learn More About Doug's Situation:
Myelofibrosis blood disorder: https://my.clevelandclinic.org/…/diseas…/15672-myelofibrosis (https://l.facebook.com/l.php?u=https%3A%2F%2Fmy.clevelandclinic.org%2Fhealth%2Fdiseases%2F15672-myelofibrosis&h=ATNhqWWRDNKQsNPh0W3qsBLmxS1N1sV5lVuCG5diw2cdre3l5osggfwDbBF6ypnNCuzl6oh9lBaT-7HEPkwhqXQWaifIzFchHsrQ-sQMPYrgwfKSjJTfgmrWtfJD)
What is a Stem Cell Transplant? https://bethematch.org/transplant-bas…/how-transplants-work/ (https://bethematch.org/transplant-basics/how-transplants-work/)
Stanford's Blood & Bone Marrow Transplantation center: http://med.stanford.edu/bmt/about.html (https://l.facebook.com/l.php?u=http%3A%2F%2Fmed.stanford.edu%2Fbmt%2Fabout.html&h=ATPLzTkB0l1N6ufVcrrOrkRdF64vV85Sp_tjsGzuC_oN9yC3EjY_QYYQ1JqR6xcHa5rGBcyI6NdC3lOw1FIejukCmF1chzVbMv42-oLGdcZDmTEdsZ_K08o7ZmdX)

Feel free to send questions!

Newest Update

Journal entry by Laura Read

Hi everyone,
We've been talking for a long time about how we want to do an update. Lots of reasons for this, but mostly, Wow, look how far we are from this time last year! Last year, Doug and I had just moved into a wheelchair-friendly apartment on a busy street in Mountain View. We were taking 45-minute drives to the Stanford outpatient clinic every other day so he could have tests and transfusions/infusions for platelets, red blood cells, and potions that protected him from flu, pneumonia and so many other things. The nurses, techs, PA's and docs at the Stanford ITA (Infusion Treatment Area) were our lifelines. We love them so much, and visit the ITA when we go to Palo Alto for our regular monthly checkups.

Doug will be writing an update, soon. (Or so he's been saying for weeks!) Tonight Doug's at the Tahoe Nordic Search and Rescue monthly meeting. He went early before the meeting because he has in mind a short-person skit to put on with some of the others on the Team, and they're going to practice. Since the Sierra Valley Art and Ag Trail craft fair in September, he's been making more and more Jeffrey pine wood art with his saws, chisels and paints in the yard and selling it by the armfuls to people walking by with their dogs (and families).

Last summer he had one of the setbacks the docs have warned us about. His body is hosting an epic battle of immune systems - the old and the new. They pick different locations (organs, usually) for flareups. In the past, it's been the skin, but this summer the systems went crazy in his liver. Doug had to start a steroid, prednisone, and it zapped all of his strength and energy, and whatever calmness he had. It also made him puffy. He couldn't mountain bike, road bike, stand up paddle board, or even hike. But he could make art - so the Art & Ag Trail was a savior! Good news is, the liver has recovered and he's almost off the prednisone. He's one plucky guy.

He gets a twice-monthly blood report, and I'm attaching the results of his blood tests today. We live by these numbers. It is amazing. The HGB (the hemoglobin count we watch) is almost normal. It's been as low as 6 and now is inching toward the normal range, which is about 13-16.5. Platelets are coming up. Those help his blood clot. And WBC, white blood cell, is within normal. Recently we both had colds, and the docs said to let his immune system fight his off. We're still deeply afraid of germs, though, and he won't get any vaccinations for another 8 months or so, so the measles epidemic is super scary.

Thanks for reading and for keeping us in your thoughts. We're following closely the progress of other people locally who have their own issues to deal with right now. We love you!
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