Skip to main content

Well Then

Patagonia coats sure are tough!
The title of this post is my favorite subject line from all the emails I've received this past week from friends and colleagues and perfectly sums up life.  It brought me a much needed giggle that I so badly needed.

I want to begin by saying thank you from the bottom of my (our) heart for the outpouring of love and support we've received this past week.  We've been flooded with calls, packages, emails, texts, gift cards, flowers and well wishes. We are thankful for every single one of them.  Just when I think things are calming down, something new will pop up on my doorstep or in my inbox.  It takes my breath away every time. So thank you, thank you, thank you!


My leg 1 week later
We are healing a little more each day.  I came home last Sunday evening with 3 broken ribs, a broken foot, a punctured lung, small air pockets in my chest cavity, and some severe road rash.  H, luckily, walked away with only a few scratches.  Emotionally, we both struggled immensely the first few days.  But each day gets a little bit better, both physically and emotionally.  H resumed his "study hall" with his friends on Monday and that seemed to bring immediate joy back to his days.  Each night the fears seemed to lessen and the conversations about that day shorten.  We still talk about it every day and I can say that I carry it with me in the back of my mind all the time.  But a lot of conversations have shifted to updates on our car, which are few and far between.  They still have not recovered our car or the woman who took it.  They have solid video evidence of her attempting to use my credit cards, but they still need to locate her and the vehicle.  It continues to pop up on street cameras in the city so we know it isn't far.  I am anxiously waiting for this part to end so I can feel some closure to this horrific event.  


Look, no more hair!
In the meantime, we will turn our attention to E's birthday this week and Matt's hospital stay this weekend.  We are incredibly lucky that Matt's sisters have decided to come and stay with us while Matt completes a 96 hour infusion at U of C.  This is in preparation of his transplant in late March.  We've been told his stay will be uneventful but the fatigue will kick in about a week after he gets discharged.  By then a lot of my soreness will have subsided and I can much more easily manage the tasks of every day life.  We will, then, have some downtime before transplant officially begins the last week of March.  Phew, we could all use a little downtime!! 

Again, thank you to everyone who sent a message, called us, dropped off a package or had something delivered.  We are constantly reminded how amazing you all are and how lucky we are to have you in our lives.  We very much look forward to the day when we don't quite need as much support as we do right now. :)



All our love, 

Matt and Mandy

Comments

Popular posts from this blog

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 ...