Another Change of Plans

Why wouldn't here be yet another change in our plans? It is 2021 after all! As Matt headed down to U of C on Monday for testing, he received a call saying his cells weren't ready. There is a very specific timeline of events that have to occur before being admitted and that all hinges on the cells arriving on a certain date. So.......another curveball. Everything is pushed back exactly one week. So now Matt will be admitted on Wednesday, May 5th instead of tomorrow. He will then receive his new cells on Monday, May 10th. So this post is short and sweet but we wanted to let everyone know the change in schedule.

All our love,

Matt and Mandy

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The Beginning

It's Probably Just a Virus "It's only a virus," is what we kept thinking and hearing over the past few weeks. By this time, Matt hadn't been feeling very well for 2.5 weeks. He had suffered from fatigue, sleepiness, and some nausea. He hadn't drank coffee in over 2 weeks and eating ice cream was out of the question. After 2 weeks of this "virus" Matt decided to make an appointment with his primary care doctor on Tuesday, August 11th. They decided to draw some blood and take a urine sample and scheduled a follow up appointment two days later. When he went in for the follow up appointment they informed him that his kidneys were essentially failing and were only functioning at 10-12%. They immediately directed him to a nephrologist who scheduled a kidney biopsy for the following Monday. Fast forward a day and his symptoms of fatigue and sleepiness worsened to the point that a 2 hour nap was absolutely mandatory yet he still couldn't ga...

Boring. It's Very, Very Boring.

The title sums up the past two days. Boring. But I will be the first to say, with a hospital stay - boring is great. Matt and I headed down to the hospital yesterday morning nice and early so he could get checked in by 7:00am. They drew some labs and sent him down to surgery to place his central line. While this process was not complex, it took for-ev-er. By 11:30 or so he was finally headed back up to the floor where he'd begin his first chemo infusion. However, we soon discovered that he'd be getting 2 hours of pre-hydration and 2 hours post-hydration. So the hour long chemo was really 5 with all the extra stuff. But in Matt's words "I'm not going anywhere." The rest of the day continued to be uneventful. Matt got into his room where he will spend the next 7-10 days and his dad was able to visit in the afternoon. After a good nights sleep by all, I headed back down this morning and enjoyed a cup of coffee and a few laps...

The New Plan

We have a plan. Thank goodness. Matt and I went down to U of C today and, after waiting for far too long, met with Dr. J. He informed us that Matt's light chains have not gone down as much as they would have liked and because of that, they don't believe transplant is the best option. The main reason for this is that the drug they give Matt to wipe his immune system is something called Malphalan, and it's in the same category as the Cytoxin he just received. Meaning there's a high possibility that it wouldn't work as well as they need it to prior to transplant. I also learned today that both of those drugs are in the same class as VDPACE, which is the infusion Matt received before our initial plan of a donor transplant in 2021. Which, of course, didn't work then either. So I think it's safe to say, that category of drugs is essentially useless to Matt. So, we pivot. The new course of action is to do a carT called ciltacel. This ...

Ninja Blood

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