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.