The sweetest word....

One of the sweetest words in the English language must be 'normal'......our lives have been far from normal so we value that word probably more than most.

Alex's MRI, done to locate any abnormal or enlarged lymph nodes in his neck so they can be biopsied, came back 'perfectly normal'.  So says the radiologist and his oncologist.  We are still waiting for Stanford to review the scans and weigh in but for now.....it's normal.

So what does that mean?  We wait and watch and have another PET scan in a couple of months.  Alex seems to be keeping his latest sinus infection at bay.  His lowered immunosuppressent medicine may be helping in allowing his body to fight the infection...normally.  😊

We carry on with our normal routine - bowling, work, trips to Solvang, lunch with friends, our latest home improvement project, running the Foundation, thankfulness for the days we have together.....maybe we'll even get a family vacation snuck in there somewhere. 

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.

What a sweet blessing....

I came home from Solvang today to a sweet blessing (literally - hot chocolate mixes, KitKat bars, muffins 😁) from an anonymous Sister in Christ.......thank you!  I'm most excited about my Mama Bear mug!  Which will go nicely with my Mama Bear key chain; seriously, I may have to put this on my tombstone.


After last Monday's surprising news about Alex's biopsy-that-didn't-happen cuz you need a lymph node to actually do one, we got a call from Stanford on Wednesday afternoon.  So we're back on the roller coaster ride, but so far, it's a kiddie ride.  They had just reviewed the PET scan and are concerned.  Of course, in the middle of this, our oncologist is changing his practice.  Dr. DiCarlo's last day at his former practice was Tuesday, Stanford calls on Wednesday and they can't reach him because Dr. DiCarlo's former practice will only tell Stanford that he no longer works there.  BUT Stefanie has his personal cell number which she immediately offers to Stanford.  They speak.  Stanford is a little less concerned but feels it would be prudent to try and get a biopsy so they have some pathology to look at and verify this is not cancer. 

We will be seeing Dr. DiCarlo tomorrow (Wednesday) at his new practice in SLO and he will be coordinating with Alex's ENT (whom we love and almost worship) in having an MRI or CT scan done of his neck area to see if it's possible to get a biospy.  Exhale.

So, in response to the last two weeks and in preparation for tomorrow and whatever may come after, I got my hair chopped off today and got a work-over from my massage therapist, Carol.  Carol's motto is "I'll get rid of that knot even if it kills you".

You know what I've realized is probably the most emotionally exhausting of this whole journey, having to pretend that life is normal.  Continuing with normal routines, putting the dread aside when you wake up in the morning and acting like cancer isn't hanging over our heads, trying to act like we don't know the bottom could collapse beneath our feet at any moment.  But we do it because that's what Alex needs; he needs to feel like his life is normal, he needs to do the things he loves and enjoys, he needs to pack as many memorable moments into his day as we possibly can.  We can't sit around and wait for the bottom to drop out.  That's a waste of his life and I won't let that happen.

So anonymous friend, THANK YOU for making today a little brighter.  I think I'll sit down with a muffin and some hot chocolate....