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May 19-25

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So I guess what they say it true..."No news is good news".

Things have been pretty busy around here, so I've forgotten to write any updates lately. I didn't realize it until I started to get quite a few people reaching out to see how Mitch was doing.

Mitch is doing really well! So well, in fact, that we all got to come home sooner than expected. We were supposed to move back early October, but since he was doing so well, they let us stay in Bismarck starting around the end of August as long as we commuted back for weekly visits. And even though the round trip is about 15 hours, it was SO worth it to be back in our own home and to start getting settled as a family of 5. 

Mitch had his "100 day workup" the end of September. This is the time that any side effects or complications would be considered chronic graft versus host disease instead of acute GVHD. We are so thankful to be out of the acute window without any big issues! The work up is pretty much head to toe again, so it was a long couple days of testing that included a bone marrow biopsy, DEXA bone scan, pulmonary function tests and a ton of blood work, to name a few. I tell you what, I think waiting on bone marrow results is one of the hardest parts of this whole process for us, and probably will never get easier, no matter how far out we are from all of this. That being said, we are happy to say that MITCH IS STILL IN REMISSION! He also had another chimerism test done (seeing how many of his cells are donor DNA vs his DNA). The hope is eventually all cells are 100% donor. They test two cells lines or types of cells, and Mitch's results were 100% donor and over 95% donor. His doctor said he is very happy with results, and usually you don't see both at 100% until he is off immunosuppressants. His blood counts continue to look good as well! This meant he got his central line out. It had been a long 10 months with either a PICC, port or central line. He finally got to go swing a club again. He also gets to take advantage of the buck tag he got!  He still gets run down pretty easily, and I often have to remind him to take it easy and rest. But it is so nice to see him be able to do some of things that he loves again.

Other than that, we are trying to get back to "normal" life here in Bismarck. Although, I will tell you that normal isn't normal when recovering from a stem cell transplant during a pandemic. We are still living in a pretty tight bubble.  They are weaning Mitch's immunosuppression medication, but its a slow process. I'm hoping he can be off by the end of the year and can start getting his vaccinations. Remember, he is like a newborn and has to get them ALL again. Gus is more vaccinated at this point! I've been back at work for about a month, which was a harder transition than I thought. You would think after spending literally all day, everyday for 4 months with your husband and all three kids, going back to work would be a welcome change...hahaha. But it was what became my normal and I grew to love it. We are adjusting though. At the advice of Mitch's team, all three kids are still at home. Homeschooling a kindergartener is interesting, to say the least. But luckily Ruby loves learning and makes it pretty easy. She is scheduled for her first COVID vaccine tomorrow (YAY!!!), and we are really hoping to have her back to in person school starting in January. Gus is almost 4 month, and honestly the happiest baby and really likes to sleep at night. And Fletch is Fletch :)...the middle child is fiery and fearless, but sensitive and sweet.  We try to find little things to make their life seem normal, too. We did a birthday parade for Ruby instead of an an actual party (see Mitch's part in this below). We went trick or treating. We try to do outdoor activities or outings during the week when other kids are in school so places aren't busy. We are so looking forward to the time when we don't have to second guess everything we do and not have to worry about exposures for Mitch that could make him really sick and set back his recovery or worse. We just want our kids to be able to be kids again. That being said, we are just so thankful that our kids have adjusted so well to everything they have been through over the past year...we are so proud of them. Mitch's doctor has said that Mitch can possibly go back to work part time at the beginning of the year. Although he probably won't admit it, I think he might miss the stay at home dad role. Oh, and he can have one beer a week...that first beer to celebrate tasted really, really good! We are looking forward to every little step we get to take back towards our lives before all of this. Slow and steady wins the race. 

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