Medical Update

September 15, 2015

I've been meaning to get an update posted for about 3 or 4 days now, but between all the events of the last few days, it just hasn't been possible.

 

On Friday, September 11th, we were transferred by private plane from the regional hospital where Matt was being treated in Northern Idaho to a major cancer center in San Diego (UCSD).  

 

While we received great care at the regional hospital, it's great to be at a big cancer center now, where we have a great team of Blood, Marrow and Transplant specialists looking after us.  We also have a team of Infectious Disease specialists, dermatology specialists, pulmonary specialists, and physical therapists checking in on him every day. We are very confident that we're in great hands!

 

The transfer down to San Diego was a bit rough.  Despite having a private jet, a full medical crew, and only being in the air for about two and a half hours, it really took it out of Matt.  

By the time we landed in San Diego, his fevers were spiking again, which was only exacerbated by hot weather in San Diego.  Also, the ambulance transporting us from the tarmac to the hospital was exceptionally hot, so by the time we got to the hospital, Matt wasn't doing too great.

 

We stayed in a standard "neutropenic" hospital room ("neutropenic" basically just means an isolation room where he isn't exposed to any potential bugs or bacteria).  Somewhere between 2:30am and 4:30am that first night, Matt spiked a fever of 105 degrees (about 41 degrees C).  The ICU team came in and we ended up getting moved to a more intensive care unit.

We've been in this unit since.  They didn't have a bed for me (I had been sleeping on chairs that fold out into a bed up until now) so Matt's dad brought me an air mattress, which has been heavenly!

Matt's fevers are still consistently spiking to 104+ degrees, so we're constantly having to keep him on Tylenol IV and keep him packed with ice.  Last night his fever rose to 105.5 degrees, which was quite scary.

 

They still don't know what's causing the fevers, which is their biggest concern at the moment.  They have him on an array of meds, including broad spectrum antibiotics, anti-virals, anti-fungals, etc, both as a prophylactic measure and to treat any potential infection he may have (although so far he's been testing negative for everything).

 

He has also developed a rash all over his body, and they don't know if it's a drug reaction or part of a potential infection.  They biopsied a piece of his skin yesterday, so we are awaiting the results of that.  

 

They also did a CATscan of his chest the other day and the results show that he may have an infection in his lungs (which could be causing the fevers), so they've assigned him a lung doctor who will be doing a bronchoscopy on him tomorrow.

 

His blood pressure flip flops between super high, super low, and relatively normal.  The physical therapy team came in today to try to get him to take a few steps (something he hasn't been able to do in a couple weeks now), but his blood pressure was too low for him to stand (it dropped to 90/56 as soon as he tried), so they had to hold off for today.  They did a few other tests on him while he was in bed, though, and he did pretty well on those, so that was encouraging!

(This was the cool "shampooing shower cap" - for when you can't take an actual shower!)

 

He just had another bone marrow biopsy this afternoon to determine whether and to what extent the chemo was effective.  The results of this will determine the next steps in his treatment path:  whether he has to repeat more of the gnarly, hardcore chemo that he did the first week, whether he moves on to a more "normal" less intensive chemo, whether he has a bone marrow transplant, or any combination of the above.

 

I'll try to provide updates again shortly, but it may not be for a few more days.  Thanks again for all your love and support.  It means the world to us.

(Getting out of the ambulance in Idaho at the airport -- Matt's first time seeing sun in 2 and a half weeks!)

 

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