Riding that roller coaster.....

Just a quick update since my last post......We saw Alex's oncologist at his new office.  He still can't palpate any lumps and we have an MRI scheduled for Wednesday, 3/20.  Stanford wants to see if there is ANYTHING to biopsy; they would really like to get some pathology on what popped up in the PET scan.  Stanford mentioned treatment options, should this be a reoccurance of his cancer and at least we have an option called CAR-T.  It's a new treatment (about 1 year old) and involves harvesting his T-cells, altering them somehow, then re-injecting them.  They will start to target a certain marker (C19) on his B-cells that are the cancer-causing agent (don't you just love all this medical information you glean from my blogs??  😷 ).  We're thankful that we at least have a treatment option; at this point with Ian all we had were clinical studies.  Ian had this same marker on his B-cells but CAR-T was still in the trial phase and it wasn't open to patients with his particular type of lymphoma......the science was just 7 years to late for our boy.....

In the meantime, Alex has contracted another sinus infection.  His doctor is starting to talk surgery...not what we are hoping for but he can't keep going in every 6 weeks and getting put back on antibiotics; at some point he will become immune to them.  So, we are seeing his very accommodating ENT today and will talk options.

We got his blood work back from Stanford and his levels continue to be good - reassuring from a cancer standpoint.  The level for his immunosuppressent medicine has also come down, so we are now below the normal level for other transplant patients but in the target area Stanford wanted him to be.

In the meantime, Alex continues to feel well except for an irritated throat and we do the things he
loves to do - bowling, working at the bowling alley, watching bowling on YouTube, flag football practice with the Special Olympics and attending Hidden Wings in Solvang.  He had his first trail ride last week - with photographic proof provided.

Pray for us this week.....for answers to these recurrent infections, for nothing to biopsy in his neck (still scared to ask for this because it seems so out-of-reach) but the courage and stamina to deal with whatever may come our way.