Monday, June 20, 2016

Hello from the Other Side...Or , YAY! We're not in the hospital!

"Home is the nicest word there is."
-Laura Ingalls Wilder 

We are home, for now, but most of you know that already. If feels so great to have my husband at HOME with us! It's nice not to have to rush to the hospital every morning (although we frequently go for blood tests and other appointments.) It's nice to be able to at least pretend that things are back to "normal" and it's nice to be able to see my husband happier. 

Being home however doesn't mean that he is cured.  Unfortunately AML is a marathon, not a sprint. How I wish that he were just "cured" and we were DONE with this chapter of our lives, but alas that is NOT the case even a little bit. We have a long ways to go still, and I frequently remind myself that I need to take things one day at a time.

We went for ANOTHER bone marrow biopsy today. My poor husband has now endured FIVE of these in the last month and a half! The doctors told us that when we come on the 29th to meet with the doctor we should have a bag packed. If the bone marrow biopsy is GOOD he will be admitted to start his consolidation chemo which would be about a week in the hospital (to keep the cancer from coming back) if it's not good, he will have to be in for another long bout of chemo, so another month or so. I'm praying for good results!

The bone marrow transplant team said they are having "difficulty" finding a match for Brian. They didn't exactly say why, but one doctor said something to the effect of "you never know who hooked up with who a ways back" so I'm guessing that to mean that my strawberry blonde, blue eyed, freckled husband has some non-european lineage in his DNA somewhere. One nurse said he was "unique" I of course knew this already, and am not surprised he can't do things the "normal" way. Every step of this journey has thrown us a curve ball, but I refuse to lose hope!

The transplant team discussed other possible ways to get the transplant done in the event they couldn't find a match, either cord blood which would be an advantage in that the stem cells in cord blood are young and need less "matches" since they aren't fully developed or using a half match as in one of the kids. Brian doesn't want one of the kids to be his donor, but when he discussed it briefly with them they were arguing over who would "GET" to be the donor! They love their daddy, and would be honored to be the one to help save his life!

Speaking of donors, and searching, we will be hosting a Be the Match drive at Ypsilanti Community Schools high school on July 15th from 3-7.  I need volunteers to come an hour early and learn how to help with swabbing and registering people. 

If you read this and you are able, please shoot me an email or message to let me know, even better if you are famous or something and happen to read this (Hint Hint Ellen, Blake Shelton, Bachelor Franchise folks...) and want to show up to make MORE people come out and try to be the match for somebody PLEASE DO!!  You might not be the "unique" match for my husband, but we are not alone in this battle and there are many people also searching for their perfect life saving match. 

I am so thankful to all the family and friends who have helped us out through the Meal Train, and the Go Fund Me page, and helping to get our Be the Match drive going. 

If it were not for your kindness and generosity I don't know what we would be doing right now. Brian will get social security disability but they won't even send a check until November! (This by the way makes ZERO sense to me, but that is a whole OTHER topic for another post some day...) 

Thank you, from the bottom of our hearts for all of your help, may your kindness be repaid to you tenfold and then some.

Now that my update is complete I need to get a Diet Coke and get ready for The Bachelorette.  

God is good. All the time. 


Jennifer Voan said...

Wish I could come and help with the drive. Being a week behind you all has helped with our journey. Praying, hoping, and keeping my faith for US. Love you sister friend ;)

Phina Kelley said...

Mark and I will be there to help! Keeping you all in our prayers! Love you guy's <3

maureen marich said...

Unfortunately the one time in the entire summer I'm going camping, you guys are doing this important blood drive. Is there any other way to donate blood for Brian's cause? In addition, I just want to say I appreciate you opening the doors of your family's private life and letting us all know Brian's status from time to time. Your faith in God, strong family bond, and the overwhelming support of friends and family will pull you through these scary times. Hang in there and know I love you and continue to pray for your family! 😊👍☀️

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