Final Post

        April 11 - The SCCA Consult and Stem Cell Transplant

Family = Home

Seattle

South Sound

Its crazy to think how quickly and sometimes so slowly time has passed since this started 2 1/2 months ago. So much has happened in the last few weeks, the biggest news is that I have a donor--Kathy, my sister, has courageously stepped up despite her own health concerns and called me to tell me of her decision 5 days ago. 22 years ago that it was also her that made the brave decisions to donate one of her kidneys to me. In the wise and words of FDR:

 'Courage is not the absence of fear, but rather the assessment that something else is more important than fear.' I am blessed because love truly did cast out the fear, and she has proven that.

Doctors had been saying that Kathy was the best option since the beginning because we share DNA and because this is a major opportunity for me to get off immunosuppression for the last 30+ years of my life. Immunosuppression while great for protecting the kidney, also has a lot of drawbacks for having a weaker immune system and a weakened bone marrow (most likely cause of Acute Lymphoblastic Leukemia). If I were to get a non-related donor, I would have to live with the effects of immune suppression for the rest of my life. 

I finished my 2nd round of chemo about 2 weeks ago, and am currently undergoing immune therapy infusion via small that I'm attached to 24/7. After the 2nd round, I was expecting to recover quickly but it didn't. I had pretty severe headaches, nosebleeds from severely low platelets for 4 days until I got a unit of platelets infused, nauseated for almost 2 weeks, and having fevers. The fevers brought me to the ED, first night in Seattle, and thens the following night once we got back to Portland. I was constantly on something to try to stay comfortable, and therefore did not accomplish much, including updating this blog.

We went to Seattle for a consult with a Stem Cell Transplant specialist Dr. Stephanie J Lee as soon as I was discharged per our doctors recommendation. She was fantastic and informative.  With the Leukemia in MRD, we need to get a realistic timeline down, which is basically ASAP for best results. At this point, we are about 1 month away from starting the Stem Cell transplant. 

Another major decision that we recently made was to move to Seattle for the Stem Cell procedure. Naomi Naomi is the biggest factor in this decision. One thing I knew I could not compromise was to be away from Naomi for a long period. At OHSU, I would be locked in my room for the first 30 days, then whenever I was hospitalized, for the following 100 days, she would not be allowed on my floor. But God provided a way, and it was Seattle. Seattle's Stem cell transplant allows patients with  reduced chemo to do it as out patient meaning I can go home each night as long as I wasn't needing hospitalization, and even if I were hospitalized, she can still visit me in my room. 

Lastly, the stem call registry drive is happening this Saturday 4/15  at Village Church from 1-4 pm. I had to rely on the stem cell registry and I know how much anxiety it can cause to NOT find a perfect match. It is truly a vehicle of hope for so many who may not have hope otherwise. I hope you can find the time to come and spread hope to others who deeply need it.

Praises:

1) the prayer request that God has answered for Kathy's ability to donate, and the decision to move to Seattle are huge for us. Prior to his confirmation, I felt unhinged, not really knowing if what the future held. But know that I've seen how he's confirmed so specifically, I know that he's here with us, and that we're not alone, I have so much more hope and peace. Thank you Jesus.

Prayer requests:

1)     Logistics for Seattle (housing, help needed, community)

2)    Naomi: she will need to stay behind  in Portland for the first couple weeks until the school year ends.         Pray for her to stay strong, and that she'd know she''s loved. 

3)     For me to get healthier in this next month going into transplant. The last couple of weeks has not been good for my overall health with all the ailments I've been experiencing.