30 Days of Gratitude – Day 19

Miracles

Our 2nd family miracle Part 2 (I’ve experienced 2 miracles – sharing in reverse order)

The week of Thanksgiving 1993, Jeremy’s blood work didn’t look good so they scheduled a bone marrow aspiration.  His dad and I were in the room as this painful procedure took place.  Jeremy couldn’t take the drug to knock him out.  I tried to help him with Lamaze breathing.  It was as much torture for me watching this take place knowing he was in pain.

We already suspected that Jeremy had relapsed.  It was devastating to have it confirmed.  We went into another tailspin.  The only possible cure now was a bone marrow transplant.  The odds were not in favor of their dad or me matching and Brandon only had a 25% chance of matching his fraternal twin.  We had to arrange for all of us to be tested and then pray that one of us would match.  Otherwise, we would have to use the National Bone Marrow Registry.  At that point, any match would do but there were more complications from an unknown donor.

Melissa and Kevin mentioned earlier had both relapsed and had bone marrow transplants.  Neither made it.  This was when the hit song “Tears in Heaven” came out and I heard that both sets of parents played it during their children’s funerals.  {sigh}.  I’m reliving a lot of painful memories now.  I can’t listen to that song to this day!

More hospital time was required for the most intense chemo yet!  The port-a-cath was no longer good enough for what Jeremy would need.  A Hickman would replace that.  I had seen that on other kids.  It was scary.  Little tubes were dangling out of the center of Jeremy’s little chest.  I would have to be precise and so very careful cleaning it and flushing it.  I was so scared that Brandon or Jeremy would pull it out accidentally.

I remember crying when I saw Jeremy’s sweet hair all over his pillow after a few days of intense chemo.  That one little thing almost did me in, it made it REAL.  I received a call on my birthday that year that Brandon was a match!  I burst out crying and the lady that called shared my joy!  Best present ever!!  Plans had to be finalized including Jeremy’s wish that was being granted by Make a Wish to go to Disney World.

My family got together before we were admitted for a family dinner.  Lots of photos were taken as we celebrated life!  We went in on February 9th – Bren’s birthday.  Full body radiation was required for several days. Most kids get knocked out but Jeremy’s sensitivity to those drugs kept him awake.  So they let me communicate by microphone with him to keep him calm.   I read stories to him as he laid still  with his goggles on.  I could watch him on the monitor and remind him not to move.

Another horrific decision had to be made because leukemia hides in reproductive organs.  Because that is what happened with young Kevin, I had to make the decision on my own to do one more radiation treatment.

The nurses had posted a chart with Jeremy’s blood lab levels.  The day one level hit zero was bone marrow transplant day!

I’ve never seen anyone more exhausted!  We had a little potty chair set up next to his bed.  He had horrific diarrhea for days. After the radiation to his testes, I asked them to bring diapers because Jeremy thought he had to go to the bathroom all of the time but then couldn’t go.  I reassured him that it was ok to go in the diaper.  I remember one nurse saying something ugly about that but I was too exhausted to confront her.  I had a present a day for both boys. Sometimes they would talk over the phone about their present – a little dinosaur or train – something for them to look forward to. We had a tv and video  in the room and that kept Jeremy entertained. Family members could come in as long as everyone washed their hands. No masks were required.

Brandon and his magic bone marrow – How do you explain to a 4 year old little boy that something in his body has the magic that can save his brother?  The social worker and I talked this over quite a bit.  I ended up using the Good Guys vs. the Bad Guys.  Since they loved Teenage Ninja Turtles and Power Rangers, Brandon was so excited to help his brother fight the bad guys.  Thank God they were able to knock Brandon out for this painful procedure.  I got to see him for a quick minute before they took him into surgery.  Billy stayed with him before and after while I went back up to Jeremy.  Then Brandon was back at home with my mom to recover.  He was sore for a few days and then was fine!

Can you believe Jeremy’s transplant was the easiest part of the whole process?  They simply hung a bag of “blood” which was the marrow.  It went right into his Hickman!  Every day his blood counts improved!  They finally released us on March 18th – St. Patrick’s Day!

We went to the bone marrow clinic weekly for the longest time.  Dr. Yanovich was an amazingly kind man.  We could have chosen any facility but I wanted to be close to home and we made the right decision.

One more horrific scare – Easter Day.  Jeremy was so bloated and had a strange color to his skin.  I can’t remember if he had a fever or what happened but we ended up back in the hospital.  Graft vs. Host – who was going to win?  The fear of God was with me.  I think I had been preparing myself all along for his loss.  Was I a cup half full or empty?  I really didn’t think I could live through this if he didn’t make it.

Remember there had been several kids that didn’t make it.  I didn’t mention Crystal yet.  She was a year older than Jeremy and in the next room of the Transplant Unit.  Her mom had just had a baby and couldn’t be in with Crystal the whole time.  My heart broke for that little girl and her mommy.  I had just found out that she didn’t make it!

They stabilized Jeremy and he came back home.  Every day he got better.  He grew in the most gorgeous curly black hair!  Jeremy could go out in public as long as he wore a mask until the doctor said it was ok not to. I remember when he was told to stop taking the anti-rejection meds.  Since Brandon was a close relative this was the case but if it had been a stranger, he would have been on anti-rejection meds for LIFE!

Jeremy AND Brandon turn 24 tomorrow!  Jeremy had some challenges with hand/eye coordination and ADHD.  I’m proud that he went off of the ADHD meds in middle school because he didn’t like the side effects.  He has Metabolic X Syndrome and a few other small issues today.  But he is a survivor!  He led the first lap of the American Cancer Society Relay for Life one year.

I’m so grateful to God, the doctors, nurses, scientists, hospital volunteers, Mom, Bren and Terry for taking care of Brandon, my family and my friends for being there for me, the community for offering financial support. I have to give a very special thank you to Dr. Lee – the boys pediatrician. He made the early diagnosis of Jeremy’s leukemia.  He will also be mentioned in tomorrow’s miracle:)  I’m grateful that I could be with Jeremy throughout.  Patients need an advocate.

I am also thankful that Jeremy doesn’t remember much – he’s quiet about so much but I want to believe he doesn’t remember any of it.

I have to share that I had a lot of years of therapy during the treatment years and afterwards for post-traumatic stress.  I was right where I needed to be and would have done it all over again.  The one time I thought I would break was when Bren called me and told me Brandon had a bad case of stomach flu.  She was worried that he needed to go to the hospital.  I sat there in that hospital room with one sick child and sobbed for my other baby.  I couldn’t be in two places at once!  Thankfully Bren got him thru that without needing the hospital.

I pray for those that are currently going through these treatments and their families. I pray for those that lost their battle and their families.  I pray for those brave doctors and nurses that take care of these kids because I can’t imagine anything harder yet more rewarding.

What are YOU grateful for today?

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2 thoughts on “30 Days of Gratitude – Day 19

  1. I am so thankful that we all still have one another. Sher, you are an amazing mother and sister. God knew what he was doing when he chose you for your twins and you for my sister. ❤

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