He’s Just Alex

Alright…well first off let’s give everyone an update on our favorite BMT patient Will!  While the steps over the last couple of weeks have been small, they have been important in the ongoing progression of his recovery.

I’ve mentioned this briefly before, but one of the main culprits of his current complications (Low platelets, decreasing blood counts, etc…) has likely been the medicine he was originally prescribed to deal with his Graft VS Host Disease, Ruxolitnib or Ruxo for short.  I know what you are thinking, why is he taking the medicine that is causing the problems he started this whole thing with.  Well, that is how serious the GVHD is.  The low platelets are manageable with ongoing caution and an abundance of treatment.  Untreated GVHD can lead to organ failure and death.  So, it’s something we never questioned. 

For us its been more about how soon can we get him off the Ruxo and hopefully see a rebound of his numbers and that has been a slow process, impacted by his TMA complications. 

Well, for the last eight weeks or so we have been gradually weaning him off the Ruxo.  We started with two pills a day.  Then a pill and a half.  Then one pill.  Then a half and now finally we are on a quarter of a pill a day.  Each step of the way we stop and watch for signs that his GVHD might still be lingering.  For Will, it was mainly in his stomach, so those symptoms are loss of appetite, vomiting and diarrhea.  We are very fortunate that each step of the way we haven’t seen any setbacks on the GVHD front and have been able to proceed with the weaning in a normal fashion.

While he’s not quite off of the Ruxo yet (we are hoping for next week!), this last week saw some of the most positive results yet as his platelets bottomed out in the 30’s and in fact rebounded up to 35 after a week.  Baby steps but we will take it.  This is the first time his numbers have gone up without blood products since right after the transplant.  So, it feels like we might be seeing a light at the end of that tunnel.

They also did another round of Chimera testing, which if I understand correctly is where they test his cells to see how many of them are donor cells vs his original cells.  While he was 100% donor cells at the last test, they check every few months to make sure he doesn’t have any lingering old bad cells that try to take over his system. The two tests they ran this last week were once again 100% donor cells indicating that the transplant is working and everything is where it should be. 

It all remains a slow process but one that it feels like we crossed a mini (I’m talking inches or centimeters for our metric friends!) hurdle, passed the summit of complications and we are starting to gradually run downhill! 

It’s a marathon not a sprint and he still has some challenges from the TMA that we are getting through with his twice a week treatment.  On top of that, his poor body has suffered from all the bed rest & steroids to the point where he isn’t very mobile at the moment and uncomfortably shuffles around the house.

This last week he started asking for a wheelchair and that conveniently coincided with his first round of physical therapy, something that had been a bad word for him previously.  He did alright at his first appointment after flat out refusing to do it in the past so we will take that as a positive.  We will be adding that on with weekly visits to our rotation of hospital trips so yea more time at Phoenix Children’s!  Our home away from home!  (Where is my sarcasm font, I think I misplaced it.)

So, all that said we are in a really good place on the Will front.  So why did I title this post “He’s just Alex”?

Well, its April 5th today.  On April 5th 2005 a very special event happened for us and I’m not talking about the University of North Carolina’s Men Basketball team winning the national championship the night before, although yes that did happen (Shout out to NC State, while I am a die-hard Tarheel fan and always will be you have to be a little happy to see the Cinderella story  of them going from not in the tourney to winning their way in to now being in the final four.  I will mildy cheer for the Wolfpack in the final four, mostly because it ruins everyone’s brackets.  That said you know what they say, “You can’t get to heaven in a red canoe, ‘cause God’s favorite color is CAROLINA BLUE!”  GO HEELS!)

Deep in thought from day one!

No, April 5th 2005 was the day our beautiful first baby boy was born as Alexander Robert Anderson joined our little family.  From the minute he was born I remember that common feeling all first-time parents have, that your life completely changed in a minute and would never be the same. 

I’m not sure how many of our family we have shared this with, but we intended to call Alexander “Xander” for short, but it never really fit.  He was just Alex from day one and outside of the occasional “Xander the Mander!” he would always be that way.

He had amazing blue eyes

Alex was mostly a very happy, healthy baby and made Mom and Dad very happy as well (other than the fact that the kid never slept more than 15 minutes! But who needs sleep anyway!).

They were all bad hair days with Alex and he couldn’t care less!
Started him on the video games early

Life had challenges; all lives do.  We went through all his regular checkups during that first year and everything was normal.  He was progressing the way a healthy baby would.  When he turned one Kim noticed some new red dots on his hands and fingers, where he commonly had been sucking on them. 

Hanging at the cabin

Then at his 12-month checkup she asked his pediatrician about it.  They ran a blood test and discovered he had dangerously low platelets.  From there we went through a whirlwind of taking him to Primary Children’s Hospital in Salt Lake City.  After what felt like an eternity in the ER (and looking back at it our first of what would become many sleepless nights for Kim and I in children’s hospitals!), eventually Alex was admitted overnight and diagnosed with ITP. 

It felt overwhelming at the time, but as parents you roll with the punches, adapt, and move on.  Having a nephew with Hemophilia, ITP felt a little less scary to us.  We could deal with being vigilant for a bleed, that was his life after all, and we had learned a lot from him.  It’s challenging for a baby crawling and learning to walk to try not to freak out over every bump, but we made the best of it and got through it.  Alex was given a round of steroids and thankfully rebounded and we hardly ever thought of it again although looking back it may have been a harbinger of what was to come for our family.  

For most of the next ten years, Alex was a fairly healthy kid outside of being a little overly emotional at times but eventually we would come to realize that Alex was on the spectrum for Autism and didn’t always process challenges the way other kids did.  But he was Alex and we loved and defended the heck out of him. 

Every year we would try to get Alex to dress up for Halloween and he refused.  He would hardly even let you put a hat on him.  I remember the fight at his preschool graduation to get him to wear the cap his teacher painfully helped the kids make.  He never wanted to wear a costume because as he told us when we asked him who he wanted to be for Halloween one year, “I’m just Alex”

With Zach, best of friends…most of the time 🙂

That saying summed him up in a nutshell.  He was just Alex and there was nothing more we could ever want for him.  He wasn’t perfect, we weren’t perfect, but we were all a perfect fit for each other. 

One day I got Will and Zach to do kissy face pictures that I could send to Kim to cheer her up. They didn’t exactly get the assignment but it was really cute either way. Here is Alex mid pucker.

I loved his smile, I loved his innocence.  While I was frustrated by it at times, I love thinking back at his face when he couldn’t look at you directly in the eye, so it looked like he was always giving you the side eye (an autistic trait I’m told).

He had a wild imagination and would often get frustrated when you couldn’t see the world as the amazing place he did.  When he and Zach fought this was commonly why.  He thought everyone saw things like he did. 

He’s loving Will here, not smothering him. Will came around at a time where Alex could start helping out more and he loved entertaining Will and Will loved him right back.

He was very fond of video games, Mario, Link, Pikmin, Kirby, all the Nintendo favorites, Minecraft and Roblox.  He was rarely seen without a controller or a DS in his hands and when he wasn’t, he was busy telling you all about them and you could only hope you kept up!

He loved animals of all kinds, loved his brothers and was a fantastic older brother. He was a super smart kid who even taught Zach how to read at a young age.

Fishing with Grandpa. It was something he just decided one day he wanted to try. It didn’t stick, probably because we never caught anything, but we made great memories in trying.
My memories of Alex now are always with him having a smile. Here he is with a couple of his favorite people who obviously brought a smile to his face, Zach and Will.

It’s been a little over seven years since his passing and what pains me now is equally the loss but also the memory that seems to be fading as we get closer and closer to crossing the bridge of him being gone for longer than he was here.  I often force myself to feel the pain of him being gone so I know he was real. 

One of my absolutely favorite pictures of Alex that encapsulates his spirit and love for animals. This is his dog cousin Izziee in the middle of a few kisses

It’s a silly thing, but one of the things I remember about him the most was the way he would look at me when I came home from work or a business trip, yell “Daddy!” and run to give me a hug.  It was always Daddy with him, even when he was eleven, and he always had such a childlike innocence in his eyes.  I can still hear him saying it but the voice is definitely getting quieter in my head as the years go by.

He did Hamilton before it was cool!

I came to the realization the other day when I was taking a picture of Will, that he has officially passed the age Alex was when he passed.  Now every moment for Will, our youngest, our baby, is looked in a weird light when compared to his oldest brother, whom my memory of is frozen in time at 11 1/2.  Will has always been an Alex clone.  His mannerisms.  His temperament.  His joys and fears.  He’s just like Alex and its uncanny.  However now he’s crossed that point where I can no longer compare the two.  It makes me happy for Will and makes me sad for my memory of Alex. 

The summer after he turned 11, Alex ended up being hospitalized with Mono.  He had extreme swelling in his lymph nodes and couldn’t eat or drink.  After several days of testing and evaluation, including biopsies from his lymph nodes, we were sent home with the mononucleosis diagnosis.  Unfortunately, now we can see it was more than that, but I don’t think the doctors could have done anything differently. 

Alex mostly recovered from the mono over the rest of the summer, slowly but he recovered.  Sixth grade started at Spring Lake Elementary and Alex was facing the typical challenges of an 11-year-old in sixth grade.  Until the headaches, until the Lymphoma, until he was gone…

Alex’s happy place? Video games and a cat sum it up pretty well. Sounds like Will!

Alex would be 19 today, more man than child at this point, and every year on his birthday we try to spend the day trying to honor his memory, doing things he would like to do, eating food he liked and mainly just trying to make it a cheerful, positive day while knowing that the overwhelming pain of missing him will always take over in the end but it’s worth a shot.     

My perspective on things has shifted a little with what we are going through with Will.  I honestly believe that Alex died so Will could live.  Without his death and what he went through, his doctors wouldn’t have been so quick to jump to genetic testing to find out what was going on with Will.  Without that specific genetic testing they would have never found the RASGRP1 mutation.  Without that…

Given everything we know now I’m confident that Alex too had RASGRP1 and because it wasn’t known when he caught mono it overwhelmed his immune system, triggered his lymphoma and eventually his death.  His death allowed Will to live, and I love Alex even more for his sacrifice even if he didn’t know he was doing it. 

This picture is unfortunately a little heartbreaking as it was taken shortly before his headaches and cancer diagnosis. We didn’t know how little time we had left.

But with his death, while it’s the worst thing that has ever happened to us and weighs on us every day, I also must look at how it has changed us.  How it has made us grow.  We aren’t the people we were seven years ago and while I would give anything to have Alex back, I wouldn’t change who we are now as a family.  Alex gave us a remarkable gift.  A gift of love, a gift of appreciation for the little things each day, for never taking anything for granted, for never leaving the room without telling your loved ones you love them (even your sixteen-year-old teenager who says it even if they are mad!).  We are better because of what Alex taught us in his death.  We could rise to the occasion for Will and his challenges because we knew the alternative.  We’ll look back on this experience down the line and realize it was all easy, because the truth is there is nothing you wouldn’t give or do to have your child with you in your arms. 

So, this year again we find ourselves thinking about Alex on April 5th.  We’ll probably have some Walmart Donuts and Papa John’s pizza.  We’ll play some video games.  We’ll talk about our memories, and we will probably cry (already have thank you!).  We’ll go through some Kleenex boxes without bloody noses being involved for once!  I’ll hug Zach, Will and Kim a little more than normal and a little tighter, never wanting to let go and lose any more…

And we will get through it because that is what you do, it’s what you must do. 

Alex is my son so it’s silly to say but I loved him deeply, and a part of me will always be missing without him.  He was my first born.  Always will be.  While it was awkward at first to answer the question, “How many kids do you have?”  now the answer is always three and I never shy away about sharing Alex with anyone who will listen.  Although he’s not here with me now, and the pain of missing him some days is just too much to bear, I know one day I will have the chance to see him again, hear him call out “Daddy” no matter how old he is and run up to give him a hug. 

Alex, we love you today on your special day even more than yesterday and will continue to keep you in our hearts.  Happy Birthday Alex!

Even though we live far away from the cemetery in Payson, UT, we have been fortunate to have a few angels/good friends who have continued to decorate Alex’s grave for us on his birthday and holidays over the years. Thanks to Angela Barney for helping us out this year and Brittany Stokes who has been helping us out ever since we left Payson. You guys are amazing!

3 thoughts on “He’s Just Alex

  1. This is just beautiful Shawn. Thank you for all you are teaching me. I feel your strength and the love you have for your wonderful family. What a blessing to have each other. I wish you could have a chance to at least talk with Alex and have a chance to check in. We were thinking of you guys yesterday. We love you all so much! 🙏🤗❤️. Hugs for you all! How wonderful to have things starting to turn a corner. Thank you for sharing your experiences and the things you are learning with us. Love you so much my dear brother.

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