Chapter Two

If I was being completely accurate, this would actually be Chapter Four; if you count Alex's heart transplant in 1990, his cancer at age 10 in 2000, Ian's cancer and now the reoccurance of Alex's cancer 17 years after his original diagnosis.  But for those who only came into the story with Ian's cancer in 2011, it's Chapter Two for you.  If you're having problems following my logic, now you know how I feel about the Star Wars movies.

A friend encouraged me to start writing again and I think she was right but Chapter Two doesn't start with Alex's diagnosis of Stage 4 Diffuse Large B Cell Non-Hodgkin Lymphoma on 11/18/2017.  It starts five years ago after Ian died from cancer and the journey since then.  This will be hard for some people to read; it's hard to write.  I'll disappoint people; I've disappointed myself.  I've questioned everything I believe.  Some will disagree with me.  Others will see truth in what I say and know that my journey is much like theirs.  That the journey of faith is not a straight line; there are pits and valleys and sometimes the mountain tops are hard to find and even harder to get to.  That God is not based in theological points; he's based in how He impacts our lives.

But let's start with now.....I knew for months that something wasn't right with Alex's health but none of the test results were making sense.  My mom radar was up but I couldn't put my finger on what the problem was.  All these little things kept coming up.  A weird bump on his heal - the podiatrist pronounced a slightly misshaped heal bone.  An unusual dis-colorization on his right foot???  Again, a reasonable explanation from the specialist.  A lump under his arm - a sebaceous cyst confirmed by biopsy.  But his blood work - that was the puzzling part.  His numbers were way off but no explanation why; not from his primary physician or his hematologist and they ran a litany of tests.  Even Loma Linda University Medical Center spent a week testing him for everything under the sun with no answers.  But in the end, it was cancer.....again.  Or in his case, PTLD - Post Transplant Lymphoproliferative Disorder - a special cancer just for transplant patients. He had PTLD back in 2000 and beat it.  His first dose of chemo reduced the lymph nodes the doctors had found in his neck and six months later he was declared cancer free and remained that way for 17 years.  We had no idea it could come back.  We would find out later that other transplant kids who had PTLD had reoccurances ranging from 3 months to 6 years later.  Our Alex, being the record breaker he is, held out the longest at 17 years.

I was hoping since we hadn't detected any lumps anywhere and nothing was showing up on the CT scan except for one little bump measuring 1.3mm that couldn't be felt by the doctors, that we had caught this thing early, maybe Stage 1 or 2.  When the PET scan results came back we were shocked to see the cancer was wide spread - upper and lower abdomen, in the bones, his spinal column, his skull......everywhere.  We were not prepared for Stage 4.  How did I miss this?  How did I let this get so bad?.  How could I have let my boy down in such a major way?  Why didn't I press the doctors harder, sooner?  My job was to protect him, look out for him, be his advocate with the doctors and I had failed him.  I had let this progress to this point.....the guilt is overwhelming.

Eric & I are tired, we're worn out from fighting.  It's just been 5 short years since we watched Ian die; not nearly enough time to recover and regroup.  We've always had a 10 years stretch in between major medical crises' with our kids; why now when we are still reeling from Ian's death? I had just begun to feel like life might be ok.  You know what my goal for this past year was?  To try and find joy again.......so much for that.  I can't tell you the number of times I've reminded God that we need a break, that we can't do this again, that this kind of fight will break us and not in a good 'christian' way.  Break me to the point of walking away.  My faith had been hanging on by a thread the last five years and not fishing wire or a spider's web that is thin and delicate but deceptively strong so don't try and get all metaphorical on me.  I have had to fight desperately to retain some semblance of belief and trust that God does love me and cares about what we're going through and as a Father wouldn't rip my heart out again.