It's a God thing.....

Some messages, some tokens are so obviously a God thing they are unmistakable - today was one of those.

My Mormon friend gave this Baptist girl a Catholic pin with the image of St. Michael; little did she know the significance of it's meaning to us.  

St. Michael is the archangel with four main responsibilities:

• The first is to combat Satan.
• The second is to escort the faithful to heaven at their hour of death.
• The third is to be a champion of all Christians, and the Church itself.
• And the fourth is to call men from life on Earth to their heavenly judgment.

Today, St. Michael is invoked for protection, especially from lethal enemies - I don't know any enemy more lethal than cancer.  Which is why she gave it to us

But why would this Catholic pin have so much meaning to us?  The last conversation I had with Ian before he died was about Michael.  He had been heavily sedated and in the middle of the night he woke up and tried to get off his bed in our living room.  Amy & I rushed over since he hadn't walked in days and we knew it would spell disaster if he tried to get up.  I asked him what he was doing and he was talking to someone named Michael.  I asked if it was his Uncle Michael and he was emphatic; no not uncle Mike another Michael.  He was showing him around and the places he was showing him were amazing, unlike anything he'd ever seen before (Ian's words not mine) but he had to interrupt the tour to pee and he was telling Michael he would be right back.  We took care of business and then Ian said he had to go find Michael; he was anxious to get back to him.  Those were the last words I heard Ian speak. 

My mommas' heart hoped that the Michael he spoke of was the Archangel Michael and he was showing him the wonders of heaven.  Looking back on that day, which has given me so much hope the last 5 years, I believe two things.  That God knew Ian, my logical, scientifically minded son, needed proof that heaven existed and He loved him enough to provide it.  That God knew I needed reassure that I would see Ian again one day cuz really, who needs to pee in the middle of tour of heaven?

My hope now is that God will send his mightiest angel to help protect Alex from the lethal enemy he faces today.

There will be crappy days.......

It was a hell of a day.  It started off pretty good and hopefully ends well but the in-between was not fun.  Today was the day Alex had his porta-cath put in at Marian Hospital.  It would serve a dual purpose, to protect his veins from one of the chemo drugs that can be harmful to his veins and to try and save him some pokes from blood draws, IV's, etc.  We lost count after 40 pokes while he was at Loma Linda and frankly, he's done being poked. He left the hospital with both hands covered in bruises from them trying to access him there.  The scar tissue is building up on his left arm, and his right arm has 'rollers' making it an incredibly hard stick.  Today proved all those things true and cemented the need for a porta-cath.  They had a hard time finding a vein for a blood draw and a harder time getting an IV started.
He was scheduled to go into the Cath Lab at 12pm, due to a delay they finally took him back around 1:45pm.  We were told it would take about 1 hour to do the procedure.  We got a call at 2:40 telling us the doctor had been called out to an emergency before they got started and were just beginning the procedure.  We cringed every time we heard the doctors name paged over the speaker with an 8100 code (whatever that is?); we just knew it was another delay.
Around 3:30pm they called to say Alex was finished and would be back in his cubicle in a few minutes.  We walked back to find him throwing up violently, which had never happened before; he and sedation meds had always had a good relationship, that ended today.  He was throwing up so hard he wasn't breathing for a few seconds; scared the daylights out of us.  We found out from the nurse that she had to give him a large amount of sedation to keep him comfortable.  He'd relax then his eyes would pop open and she'd give him more.  Now he's afraid to take Fentanyl but we'll deal with that later.  The guy doesn't forget a thing, believe me, he'll remember this when they want to sedate him again.
Did I forget to mention the fire alarm after he had finally stopped throwing up and drifted off to sleep?  What else was going to happen?  I was afraid to ask.
We rarely see Alex like he was today and it was disheartening; today was hard for him and it was hard to watch.
And I was mad, I was mad that God was not protecting my son from all this.  It was bad enough that he didn't protect him from the cancer but this?  I haven't given up on God but I don't trust him right now.  I don't trust him to protect my son.  I don't trust him not to tear my heart out again.  I don't trust him to push me beyond what I can endure.  I don't trust him to heal Alex.  And I don't know what to do with all that.
Our conversation today wasn't me demurely pleading and asking for help, it was me demanding to know where He was?  He can tell the devil to leave us alone, He could protect Alex, He could even make all this go away.....where was He?  Hasn't Alex been through enough?  Hasn't our family suffered enough?

"I'm good"

Alex is a man of few words.  If you've tried engaging him via text or on any subject other than sports, you will quickly find this out.  We often joke that his only response is often 'Ok', 'good' or 'fine'.  But these days it's usually, "I'm good".  No matter the hits that keep coming, no matter how inconvenienced he might be, no matter what new symptom may crop up from his chemo, his response has been "I'm good".  .  He goes with the flow and takes everything in stride.  He doesn't complain and he's thankful for everything...even though he's beyond tired of being poked for blood tests he still tells the phlebotomist 'thank you' when she's done.  He's brave without even trying.  He takes in more than you think and he ponders it, then days later a question will emerge
God, I love this boy.

This is exhausting, and we're just starting.

It's been an emotionally exhausting 24 hours.  I cleared out my desk at Grace Baptist last night; probably the neatest it's been in 3 years and turned in my keys.  That was a little more emotional than I had expected.  Then later that night after Alex finished his shower he complained (you know, complained isn't really a good word because he really doesn't complain.  I notice a wince or something in his demeanor that tells me something is wrong and end up having to quiz him and sometimes drag the information out of him) about feeling like he was running when he wasn't.  I pulled out the stethoscope after years of neglect and found that his heart rate was 110 - technically tachycardia.  We waited 30 minutes, then rechecked....108.  Too high.  I texted his doctor who felt it was probably from being anemic and all the other stressors his body is under with chemo, low blood counts, etc.  Checked him again at 1am - 108.

His doctor called early this morning wanting us to come in for a quick EKG so he could send it to Alex's cardiologist for comparison.  My tire pressure was low on my car so I needed to wait for my dad to come with his handy air pressure thingy to pump it up, then off to get gas and pick up something for Alex to eat.  Alex wanted a decaf latte and a scone, I went full leaded and you know how smart my son is?  He decided to wait till after the EKG to drink his coffee because it might affect his heart rate.....how smart is that?  He's a better mom than I am.

EKG was abnormal, which is to be expected for a transplant patient but there's always that lingering doubt that something is wrong.  Dr. Z said he would have his nurse call once the cardiologist compared the EKG's and if there was a significant problem he would call personally - probably the first time I have NOT wanted a doctor to call me personally. Got the word, from the nurse, just a couple of hours later that there is no change to his EKG.  Because the nerve connecting Alex's heart to his brain had to be cut during the transplant his heart rate is controlled more by the hormones in his body so when he is under stress, his rate will go up.  I think you would constitute all this as stressful.

Then we were off to see his oncologist.  He feels that Alex is doing well considering how tough this regimen is on people.  His counts are low - in the basement really but clinically he's still doing well.  I now have HIS cell number and will keep it until I die (I still have the kids pediatrician's number too - just in case).  We made plans for his next round of chemo to take place at French Hospital in SLO after his birthday.  Dr. D is arranging with a radiologist here in Santa Maria (who we like and trust very much) to put a portacath in before chemo begins, then we'll start the next round on the 13th or 14th.  We can expect a 3-4 day hospital stay along with twice weekly blood draws and possible transfusions.

On our way home we stopped at Avila Beach cuz the boy needed to be outside; he's so tired of being cooped up in the house.  It was a beautiful day at the beach with very few people so he was able to walk around a little without his mask and just take it all in.

But the good news, the really great news is that the doctor couldn't find the huge lump that was in his neck before we started chemo......that's a really good start.  We'll take it.

same old boat

I walked into Alex's room this morning to check on him since his white counts are literally zero, making sure he didn't have a fever and I realized I'm back where I started 6 years ago.  Same room, similar disease, different boy.......but the same fight.
I stay up with him until he goes to sleep, just like I did with Ian.
I care for his needs, making sure he gets his medicine, constantly checking him for any signs of pain or illness.....just like I did with Ian.
Eric & I agonize over balancing keeping him healthy vs. letting him live as normal a life as possible.....just like we did with Ian.
I keep a walkie talkie by my bed so Alex can call me in the middle of the night if he needs me.....similar to Ian; with Ian we used cell phones but I tend to sleep through text notifications these days so we've gone 'old school' with Alex.
I've rearranged my life around medications, doctors appointments and tests.......just like I did with Ian.
One thing is different, I didn't ask for a projected prognosis this time.  Ian had a 85-90% probability of being cured but he was the 15%.  I know doctors want to give you hope but in my mind prognosis = 'my best guess' so why ask?  So when folks ask what Alex's prognosis is I tell them the truth, the doctors didn't offer us one and we didn't ask......we only have two options and we've experienced them both.

When bowling makes you cry

Alex's first thought when he was told his cancer was back was, 'when can I bowl again?'  This guy LOVES bowling and he's good at it!  Earlier this year he bowled a 297 game - for those not nuanced in the finer points of bowling, a perfect score is 300.  He has every known bowling apparatus or tool known to man or sold online.  Do you know how hard it is to get excited about watching professional bowling?  I do!  But he watches it.
He had been planning on bowling with his grandpa tomorrow; the first time in weeks.  For someone who bowls twice a week, that's a lifetime in dog years.  Now he can't.  His blood test results today showed that he has virtually no white cells in his body - WBC count 0.3, ANC 0,0.  Its hard to get much lower.  What that means is he is neutropenic (word for the day) and can easily get an infection that could land him in the hospital - again.  I hate this; we had to let him know that bowling tomorrow was not a good option and after a few moments of disappointment you know what my incredible young man did?  He took it and rolled with it; he just keeps rolling with the punches, trying to look on the bright side and looking forward to next week when he might be able to bowl.
It's not the bowling that made my cry, it's how wonderful Alex is; how he just keeps going and how much he doesn't deserve this.
He's had some really great highlights in his life, i.e., playing for the US National Bowling Team in the Special Olympics World Games in 2015 but he's also had some tremendous lows......but he keeps going.....so we keep going.

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.