Sunday, November 22, 2009

Bumpy

Ron caught a low-grade infection sometime in the past few days since his release from the hospital. His temperature spiked to 100.3 (100.5 is considered an official fever for transplant patients), and he's had persistent headaches since yesterday morning. Today he experienced a good amount of vomiting--the first since this transplant process began. The doctor on call suggested we go back to MGH this morning, which we did. They did some blood work--counts are normal--and took some cultures to rule out the flu. We should have results from the cultures tomorrow morning, but the doctor thought it was unlikely that Ron had the flu because he would be feeling much worse. Ron looked incredulous and I could see him thinking, "worse?!"

Ron has been such an atypical transplant patient. He sailed through the actual chemo, radiation, and transplant, but is now hitting his lowest physical days. Pre-transplant, he very rarely had headaches and has only vomited a handful of times in his entire life (a fact he takes pride in given his colorful college days), so these side effects feel unusual. That said, this could be a sign that the donor's immune system is successfully taking over Ron's body. If the donor has allergies, Ron will have those allergies; if the donor gets migraines, Ron will get migraines. If the donor vomits as a typical response to disagreeable things in the body, so too will Ron. Honestly, all we care about is whether the donor's immune system can keep Ron's cancer from coming back; we'd be so grateful to take the migraines over the histiocytic sarcoma any day.

We still have some low-grade colds lingering in our household, but we have decided it would be best to bring Ron home. He and I are quarantined in our bedroom and our kids are quarantined in the back of the house with my parents. One adult ferries supplies to and from the kitchen, and we're maniacal about hand washing and keeping food and utensils separate. As far as exposure, Ron is only exposed to me--the same situation that he would be in at the Best Western--but we have the far greater comforts of home, and I have much greater confidence that Ron's room has been properly sanitized. The homecoming has been tricky, but it's unbelievably soul-satisfying to be under one roof again. We occasionally hear the kids' voices outside the room and Ron turned to me after listening to Mai negotiate a popsicle from my parents and said, "that's worth it to get home."

Huge thanks to our big burly Barn dads who helped us move the kids' rooms to the back of the house. It's been really critical to be able to sequester the kids off the playroom, and we couldn't have done it without you!

And finally, thanks to all of you--family, friends, everyone--for your love and support. Coming from a girl who at one point in her life thought she could do it all (who WAS that girl?), we absolutely could not have done it without you.

Tomorrow morning we will go back to MGH for another follow-up visit with the transplant doctor. These past few days, Ron has had very little energy and I have been far busier than when he was in the hospital, so forgive us if we're out of touch. We'll do our best to keep everyone updated. Sending lots of love--

H

4 comments:

  1. Home Sweet home
    Ha sounds like you have everything under control even with the ups and downs.
    Ron's comforts are the main concern.
    You really know what they are and have weighed the pros and cons and made great decisions.

    Love your post, love your thoughts and feelings. Keep us in the loop.

    All the best on a speedy marriage of platelets, stem cells,immune system etc..
    Your #1 Fans in Winchester

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  2. As ever, you guys continue to humble us with the way you forge ahead. I am so sorry to hear about the fevers and headaches, Ron--but you must be so glad to be home.

    When you feel well enough, you both should really be spending your quarantine time plotting a way to get on Oprah before she ends her show. (I am only half-joking.)

    Thinking of you all--

    Your western MA contingent

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  3. Dear Ron,
    My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant from diagnosis through survivorship by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
    Please know that others are thinking of you and pulling for you! To learn more about our programs and services, please visit www.nbmtlink.org or call 800-546-5268.
    All the best!

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  4. Ha, I assumed the role of praying to the porcelain G-d in college so you can say my stomach is far weaker than the iron man's. But Ron played an integral part in inducing my vomiting so for that I am forever ungrateful! Ron, must be great to be home and hearing the sounds of Mai and Tal. I imagine their laughter lifts your spirits and their melodies lull you into calmness. I find that if I am away from home, even for a day... I miss the sounds and chaos of my kids. But given everything you have gone through and to get to this point... you are a walking and talking miracle uplifted by the life of your children and loving wife. Ha, you are, in some ways, a miracle... for Ron, and we, as an entire extended family could never show our true appreciation for the care and love you continue to provide him. There is no doubt in our minds that the positive results of his journey have been due, in large part, to you.

    Billy, Cher, Kijana, Ethan, Dylan and Leo aka "the Woolly Mammoth".

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