Whirlwind of fun and information

Wednesday, July 25, 2012

Dillon tried to make up for the past 2 months of illness and hospitalization in the past 4 days....you name it, he did it.  The amazing and wonderful part of all of it was his enthusiasm, his energy, his endurance, and his motivation.  Swimming, basketball, friends visiting, going to the movies, favorite foods at home and out, an airplane ride, bowling, aquarium visit, and a sports car.....soooooo much fun to be had in so little time.  He sailed through it all with health, wellness, and joy.

The trip to Denver was great in many ways.  Sean, Dillon, and I were all relaxed and happy.  We headed out on Monday afternoon after a quick visit to UNM for a blood draw to make sure everything was okay for traveling.  All was well, so off we went.

A big surprise I planned for Dillon.....yes another big surprise.  You know as a mother who is having to watch her son pass the summer in a hospital, I figure any little extra things I can do to help build positive memories for him is well worth it.  Photo below......

I'm not sure who liked it more....Dillon or Sean :))

We kept finding signs with our names on them....

As for the medical portion of our Denver trip....take everything you have learned about cancer and medications and side effects in this Big D journey, and multiply it by 10....that is about how much information Sean and I were inundated with yesterday.  It was huge and scary and overwhelming.    I cannot even begin to put it into words for you here.  So what I will do is just keep updating you on what the next step is and maybe a little look forward, but if you have questions, please comment and/or email and I can share what I know.  We just keep shaking our heads....this is unbelievable.  We still have trouble wrapping our brains around the fact that this is happening to our child.

Here is what I can tell you without question.  We are back at UNM inpatient.  We will be here for probably 15 or 20 days, if all goes as planned.  Dillon is getting his second cycle of the new chemotherapy, which is 5 days of one kind of chemo, 2 days off, and then 3 days of another combination of chemos; this is just like last time.  We will then HOPEFULLY get a few days at home.  At the end of a few days of rest there will be another CT scan, lumbar puncture, and bone marrow aspirate.  Depending on what all of this shows and also depending on how Dillon fairs physically, we may or may not be going up to Denver for the transplant at the end of August.  There are innumerable variables that come into play with the doctor's deciding if we go to Denver after this cycle.

If we do go, then we will be gone for a minimum of 4 months and more likely 6 months.  The first 2 weeks in Denver are outpatient.  We will be provided with a little apartment and that will be our home base.  Dillon will be seen by every imaginable specialist and put through every imaginable test; dental, dermatology, pulmonary, radiology, GI, GU, neuro, ENT, endocrine, renal;  All of this is to get baseline information to know how each system in Dillon's body is functioning BEFORE we begin the transplant process; and with that they can monitor changes as the transplant process progresses.  After that 2 weeks period of outpatient testing and procedures, Dillon will be admitted to the hospital and will begin the "conditioning" treatment to prepare for transplant.  This is the super duper humongous toxic chemo that will completely wipe out Dillon's bone marrow and immune system.  Then comes transplant. 
Again, I will share more about the details of what this will look like as the time gets closer.

There are several bone marrow match possibilities that are being studied as we speak; a couple of them are adult donors that are in the registry and several are frozen umbilical cord blood bank donors.  There are numerous and vastly complex testing that has to happen to get the match as specific as possible.  There are close to 100 factors that they look at and the preliminary match begins with about 10 factors....so they then begin looking at more and more factors to narrow down the match to the one that has absolutely the most factors the same as Dillon. 

Basically, we are just needing to take this HUGE project one day at a time, one medication at a time, one procedure at a time, one side effect at a time.

We love and appreciate all of you and will keep on trudging through the details and information as it comes.