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What We Know....and All That We Don't

Several weeks have passed since our last post. That means we are closer to transplant and slowly, but surely, the answers are coming in.  Here's what we know so far.

1. While Matt's January numbers did NOT increase, his doctor from Milwaukee would like him to discontinue his current regimen.  Instead, he prefers he be admitted to the hospital in mid-February for a 96 hour infusion.  This is typically called VBPace.  While this was not the news we were hoping for, we understand his reasoning behind the decision.  The hope is that this "traditional" chemo will greatly lower Matt's burden of disease before transplant.  His numbers are not considered high right now, but Dr. Hari would like to be as low as possible so the transplant can be most effective. Right now Matt is scheduled to be admitted to U of C on February 18th and will stay through the weekend.  

2. Transplant is scheduled for the second week in March.  The hope is that Matt will be admitted for 7 days and if all his numbers look fine, he will do the rest of it outpatient.  This is contrary to the original recommendation of 3 weeks in-patient.  He needs to be able to travel to and from the hospital for 28 consecutive days so he will be staying with his dad during this time.  We are hoping (fingers crossed) that his numbers improve quickly, like they did for his last transplant, and he can begin spacing out his visits and will be able to come home in between. We, of course, won't know that until the time comes.

3.  The most exciting (that's a relative term) news is that we found out Matt's sister, Emily, will be his donor.  She was a half match and Dr. Hari was extremely pleased with that.  While Matt had thousands (literally thousands) of full matches in the data base, Dr. Hari would much rather have a sibling be the donor.  This is for two reasons: 1) Emily will continue to carry around the cells that Matt may eventually need in the future.  So this provides a stronger contingency plan should we need it. 2) Because she is only a half match, there is a better chance of those new cells fighting the myeloma.  If it were a perfect match, this chance would be reduced.

So as you can tell, it's been a lot of conversations over these past few weeks.  We are figuring things out and beginning to look at a real timeline. We have also begun to discuss this with the kids.  We are keeping it very simple and hopeful.  So far they seem to be taking it in stride.  I'm sure there will be days in March and April that will be tough and those conversations won't be easy.  My hope is that these conversations will be focused more on missing daddy than being scared of what he's going through.

I'm also beginning to formulate a plan on how / when we will ask for help.  Right now my main concern is helping Matt and his dad in Milwaukee.  One of the most important variables we found last time we went through this, was food.  Matt became incredibly focused on his diet to offset some of the side effects and greatly relied on his meals to give him energy.  So Milwaukee friends, I may be looking to you to spend some time in the kitchen and deliver healthy meals to Matt (and his dad).  I will, of course, keep you updated on this plan. 

In the meantime, we will continue to enjoy the last few weeks of normalcy we have left.  Thank you all for the texts and calls over these past few weeks.  It's amazing to be reminded how great of a support system we have, despite not being able to see so many of you these past few months.

All our love,

Matt & Mandy 


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