treasures in secret places

Hi from Seattle! Day 95 This will probably be my last post for awhile. I'm getting ready to go home! My last appointment here ends at 4:30 on Friday the 9th, so we will be coming home on the 10th. A birthday present from my team and the Creator of time.✨  I'm experiencing a lot of emotions as things wrap up here. The last few days have been beautiful and clear in Seattle. I've fallen in love with this city, even though it wasn't fully open and was in the news several times. I explored a lot of it on foot and some lakes by car and met some very kind people. I am so very grateful. I'm crying as I write this; reflecting on how good God has been to me. When they first mentioned the possibility of going through a bone marrow transplant, I was honestly more worried about where I would stay and who would be willing or able to be my caregiver. We have a great place in a great location (clinic, Whole Foods, corner store and delicious restaurants within walking distance) with...

Day 71.  It's been over a month since I last posted an update here. The big update is that my team (made up of rotating transplant doctors, a PA, an NP and a nurse) reached out to the PNH specialist and pediatric teams and learned that for marrow failure disorders of blood, the T-cells are coming in at a totally normal rate. This contrasted with their experience with the huge majority of their patients who have lymphoma or leukemia. So, using the data from other PNH patients or non-malignant blood disease (usually diagnosed in childhood), I was perfectly on track the whole time, and they keep reiterating that I'm right on schedule, but the schedule for this can be from 1-4 years.🙏  My T-cell chimerism donor percent did increase from 17% donor to 25%. Thank you for your prayers! They also did a chimerism measurement of my Natural Killer Cells, also a kind of lymphocyte, and that came back at 100%. So it is that group of NK cells which is protecting my myeloid colony (still at ...

  Sailing class on Lake Union (view from apartment) Hi again friends! It's day 39 post transplant. Just a quick update on my progress: all of the numbers that I have been watching continue to do pretty well. My hemoglobin, hematocrit and platelets have maintained about the same level since the last time and my neutrophils continue to climb. Also my face has much improved. (Praise hands!)  The real news on the medical front is that they did a chimerism test to see what percent of the marrow is the donors. They measured two numbers: CD33+ cells (which were 100%) and CD3+ cells which were only 17%. This is quite low and they would have liked to have seen this number at at least 50% by this time. Eventually this should also be 100%. My doctor has a plan to retest me on Thursday the 13th (2 weeks after the initial test) to see two points to compare and note the trend. In the meantime, they've contacted my donor to see if he is unavailable on any dates in the near future to donate T...

Hi and thanks for reading and praying! My Sol Sister was here for a little over 2 weeks and we had a good time going down to the lake, exploring Capitol Hill, trying out some local eats and hanging out. We have done quite a bit of traveling together and we always laugh alot and get on really well. I'm super thankful for her and that she's able to work remotely (I found a silver lining!) and has been since March. Now Rick is back and my heart is both soaring and peaceful. I am now 28 days post-transplant and my blood numbers look good! My neutrophils (which are what they look at to measure your ability to fight off infection), are up to 1.14. While this is still outside of the normal range, it's enough for them to relax about things like going to get a haircut, etc.  My platelets are at 93, and while still low, is the highest they've been in over 20 years as far as I know, and my hemoglobin/hematocrit is 9.0/26. They actually do blood transfusions here when a person has ...

I'm on Day 15 now. Because my transplant started at 11:30 pm on July 2, and ended at 4:30 am on July 3rd, I have two "Day 0's".  Engraftment usually takes place between 14 and 21 days. I have had blood tests every day in which they measure my hemoglobin, hematocrit, platelets, neutrophils, magnesium, sodium, liver and kidney enzymes. To see if I'm engrafting, the thing to watch is the neutrophils. These are the portion of the white blood cells that are your first line of defense against infection. They are supposed to be somewhere between 2.0 and 7.3 and mine have measured between 0.01 and 0.03 but have never gotten down to zero :) ! This is by design: they wiped out my existing immune system and bone marrow, so until engraftment (when the transplant marrow begins to grow and develop in my body), I have no way of producing more of the cells, because it's the marrow that has that job. However, at the same time, I'm on medication that prevents "Graft ...

Okay! Another update! 7/7/2020 Day 5 After 3 days of chemo, a slew of medications (and medications to counteract the side effects of the medications--Grrrrrrrrr), and a couple of small doses of total body irradiation; I received my bone marrow cells on the night of July2/early morning of July 3.  I only had to spend that night at the hospital, and while I appreciated the staff and my big beautiful room with a view of the water and Husky Stadium, I am NOT a hospital dwelling person, and am SOOOO thankful that they switched my regimen to a less toxic one with 2 1/2 weeks less time in the hospital.  The first few days during/after the transplant were pretty rough. I had a headache from an immuno-suppressant drug, swollen parotid glands which were very painful, and was vomiting with little warning.  Those days are behind me! Yay God! He has been so very faithful through this entire process. Which is really so encouraging to me, because the whole fact that I'm going this...