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Posted 2019-05-06T04:33:42Z

Year One Celebration

This past week marks a year since Samuel's bone marrow transplant.  We spent the week in Seattle for lots of tests.  The most remarkable results are the bone marrow biopsy showing all chromosomes are normal, no scarring in his bones, and 100% of the cells in the biopsy are his brother's donor cells.  Also, his spleen was over 22 cm last year and is now 11 cm (10 cm is normal).  Some blood levels are a little low, but the Dr's aren't concerned about it.  Some of the meds, which he can now discontinue, contribute to anemia so we expect those levels to keep moving toward normal.  The Seattle long term care team would like him to be monitored monthly by our local Dr for the next year, but said we don't need to return to Seattle.  They are always available for consulting and any questions.  [...]

Posted 2018-09-27T07:57:55Z

Test results

Since I last posted, Samuel's liver levels kept increasing and other blood levels kept dropping.  Last week the long term care team in Seattle asked for a bone marrow biopsy.  We got the results today.  There is no indication of disease in his marrow and the scarring that was there is totally gone!  It usually takes up to a year to heal.  Other blood levels that we were concerned about were either in normal range or heading there.  We've been seen weekly in Anchorage since we came home, but next week we can get blood tests locally and skip the trip in to see the Dr. [...]

Posted 2018-09-09T07:20:54Z

Update from the home front

We've been home a month and Samuel has been monitored weekly in Anchorage and also by the long term Seattle care team from afar.  Last week Samuel's liver levels had quadrupled and this week they haven't improved.  Some other blood levels have been declining.  The Seattle team said the liver levels indicate late acute graft vs host disease in his liver.  They aren't requiring a liver biopsy, but are asking for some extra tests this coming week and also want the weekly checks in Anchorage to continue.  Thankfully the first line of help doesn't include steroids.  We would appreciate continued prayers for healing of his liver and for the other levels to come up to normal.[...]

Posted 2018-08-07T07:28:00Z

Mark your calendars!

Our dear friends and family - how many of you remember at the end of March when I sent out these words, "Man, we can't wait till all this is behind us leaving only a testimony of God's great faithfulness and the amazing stories of love and kindness that carried us!"? It is hard to wrap my mind around all that has happened since that day that seems a lifetime ago![...]

Posted 2018-07-25T19:19:37Z

Home Stretch

It has been a while since any update. So no news is good news. I had a wonderful time with all my daughters. Allison just left last Thursday after being with me longest of all the caregivers. It was so great to have her and she was able to overlap 5 days with Kristin and now my youngest, Suzanna was able to be here with her too for a few days. She is here with me for a week and will go home tomorrow and then Karen will come for the final few weeks. Almost forgot to mention that my good friend Andrew Hibshman was with me for a week in there too. I posted a bit about our time together on FB. So we are done with all appointments on August 9th and will be free to return home after that. We want to thank all of you again for your support and I am not out of the woods yet as this is a very long recovery and feels as such quite a bit. I love that I have such a support team around the world. Thank you all!![...]

Posted 2018-07-03T21:01:00Z

"Best bad news ever!"

That was my big brother's response to our good news today. Thank you from the bottom of our hearts for your responses of prayer and support yesterday. The doctor believes Samuel had food poisoning from clam chowder he ate yesterday and not GVHD! The GI team will check in on him again after the holiday to make sure he is still on the mend. Obviously, any stressor like that has a greater impact on a body that has been through so much but Samuel is already so much better today...we are confident that will be the case. If they have a question then, they will perform a GI scope at that point but they fully expect he will continue to improve.[...]

Posted 2018-07-03T01:35:31Z

Current Challenge

Samuel got sick last night and hasn't been able to keep anything down today.  Tomorrow he will see a GI team who will see if it  is GVHD (graft vs host disease) in his gut.  Your prayers are appreciated so this will turn around tonight!  Thank you![...]

Posted 2018-06-29T04:02:45Z

Blessed by my Girls and Good News

Yesterday was a wonderful day as i had all 3 of my girls with me for the afternoon and evening. Kristin and Suzanna flew in from Alaska and Allison and I met them at the airport and had a great time together. Allison and Suzanna flew out together early this morning for some vacation time together and Kristin stayed on to take care of me for the next 2 weeks. [...]

Posted 2018-06-27T05:18:16Z

Great Times with Allison

I am so thankful to have had Allison, my oldest daughter, here for the last 9 days. We did a lot of fun things together and she has been a great caregiver, cooking me great meals, keeping the apartment clean, and just making sure that I am taking care of myself doing all the things I need to be doing. We have laughed so much and had a great time together. She will leave on Thursday and Kristin, my second oldest daughter, will take over. As far as what is happening with me...I have been testing my blood sugar 3 times a day before meals and it has been in the normal range each time. I will talk to my team on Thursday but it seems that my blood sugar levels are fine. Thanks for all of your prayers on that subject. The only other concern right now is a rash that developed on the top of my head. I am using some steroid cream for now and trusting that it will not spread. The nurse and PA thought it could be GVHD (graft verses host disease), that is when my cells start attacking the new cells that my brother gave me. It is common to have a little bit of this post transplant but they want to treat it before it gets worse. So we are believing that it will not spread and that the cream will be enough to keep it under control. So again, thank you for standing with us and being such a wonderful support during this long process of recovery. We are thankful with how well things have gone so far and attribute that of course to our Lord but also your fervent prayers are availing much! We love you all!![...]