It's now been two months now since Holden woke in his bed throwing up, signaling to us that he once again was showing signs of his cancer.  Throughout Holden's treatment, from the moment he recovered from his initial craniotomy and tumor resection, he had actually been 100% symptom free from his cancer.  Post surgery, Holden experienced lingering balance issues from the location of the tumor and had ongoing painful peripheral neuropathy from some of his chemotherapies.  This combination made it difficult for him to walk unassisted, but this was not a direct result of Holden's cancer, these were lasting effects from his treatments.

Cancer is misleading this way for people who have never been directly involved in the care of a loved one.  Holden was diagnosed just after his 1st birthday, but after he recovered from surgery, he went about his business like a somewhat normal 1-year old.  Yes a significant portion of his life was spent in treatment, but to any onlookers, aside from Holden's precious bald melon, he wasn't showing signs of cancer or even feeling its effects.  In fact, throughout his first 18 months of treatment, post surgery, not one cancer cell was ever detected in his body.  Holden had plenty of rough days during that 18 months, but they were only bad because cancer treatment itself is extremely taxing on the body, not because of his Brain Cancer. 

During his treatment, Holden was admitted for fevers, required surgeries to place a shunt or a port along with a litany of other medical needs, none of which were a direct result of his cancer, rather a result of his treatment.  For clarity, fevers are a concern because many chemotherapies not only kill cancer cells, but also kill other rapidly dividing cells like white blood cells (as well as hair cells), which fight infection, leaving cancer patients extremely vulnerable. Hospital admission becomes a requirement so powerful drugs can be administered to fight any potential infection until the body has recharged its immune system.  The cancer doesn't directly cause this admission, the treatment does.  Holden, along with many brain cancer warriors, also needed a shunt to be placed and a subsequent revision of that shunt in order to drain some of the fluid in his brain that was that was left behind from his original brain tumor.  Other surgical procedures like his Central Line and Port placements were procedures necessary for chemotherapies to be administered properly and prevent the need for ongoing IV's.  All of these things were necessary to fight an enemy we saw no sign of.   

I mention this only because there were actually a few moments that I questioned whether all this was necessary.  His tumor resection had been successful and our surgeon was confident there was no tumor left behind.  For all practical purposes, Holden was cancer free, or had no evidence of disease, N.E.D., as cancer parents like to say.  During all of his treatment, not a single sign of his cancer!  This is not uncommon for many cancer patients, and the hope is that evidence of disease is never detected.  Unfortunately, for many forms of cancer, this is the primary weapon after completion of treatment- Hope.  Research can give you a percentage, and for the lackluster pediatric research, these percentages feel like nothing more than a SWAG, Simple Wild Ass Guess.  A doctor can speak to his or her professional experience.   Cancer parent groups can give you the Momcologist's perspective.  At the end of the day these patients and families are left to hope that they are one of the lucky ones.

I thought we were just that; I honestly did, although I never uttered those words.  Brain Cancer-Surgery-Treatment-Victory. Check please!  Now let's go serve our new purpose of helping other families through this horrific nightmare.  Sadly, for Holden, his victory was temporary.  As I have mentioned before, Holden's cancer not only recurred, but had metastasized to his spine at his very first post treatment MRI scan, which was only two months after finishing his treatment protocol.   Many children will remain in this remission period for a very long time and sometimes, we hope, it lasts forever.  Of course I'd prefer to cling on to that hope, but herein lies the tragedy for cancer families.  For cancers like Holden's and many others, it's a lifetime of grief, or a lifetime of angst.     

Earlier I mentioned that Holden had remained asymptomatic until recently on October 8th, which also happened to be our wedding anniversary.  The last two months have answered the question that I had previously posed to myself about the necessity of Holden's intense treatment after a successful tumor resection.  His follow-up chemotherapy regimens may have had some benefit to the rate at which his disease was progressing, but only after running out of treatment options have we witnessed the fierce and aggressive nature of AT/RT.  Time has stood still for the last two months in some respects, but the rate at which this disease has taken over our little boy and watching him succumb to this monster day after day feels like an eternity.  We are underarmed to fight this disease and so many others, but that is a story for another day.

Tonight, like the last few nights, Holden has been sleeping conformably on the couch in the Family Room, which may have been his compromise with us.  We wanted him in our bed, he wanted the floor.  At some point during the last couple of days, he's settled on the couch.  We are happy with the outcome.  Good snugglability, but only one parent at a time.  He is only waking up for short periods now, although sometimes he surprises us.  Saturday night he awakened at 3am, devoured 14 Pop-Ice popsicles over a two-hour period, and went back to sleep.  He is calm and peaceful and speaking softly when he opens his eyes.  

Our days and nights are long, which I like.  I hope time continues to stand still a little longer.  



  • I came across Holden on TikTok many months ago. What a privilege it has been to be part of his life. Since then, I have been checking in on how he is. Today I checked in, my heart is broken! I am so sorry! He was a brave little man with a huge heart. He is now met with angels! I am so grateful you have shared his life with us! You have made public one of the hardest things a parent could go thru, that is a gift. You chose to celebrate him during his final months and will continue to celebrate him. You are an amazing family! You have showed the world love. Today I will hug my kids harder and not take one second for granted. Rest easy little man!

  • My heart is broken for your loss. Holden’s story has touched so many people’s lives including myself. Thank you for sharing your son with us. Thank you for showing us what love is. Know that as Holden closed his eyes to this cruel world he opened his eyes to eternity with Jesus. I know he was welcomed with open arms. I pray your family is wrapped in God’s love and comfort for your days ahead. Forever in my prayers.

  • Dear Chad & Alex,
    I’ve tried numerous times to write this and there just aren’t the right words. Unfortunately I have witnessed the irrevocable destruction that the loss of a child has on a parent… it’s simply unfathomable to anyone that hasn’t lost their own child and I’m so sorry you have to endure this agony. The one thing I want to communicate to you both is that the handful of families I’ve seen lose their children at a young age, are left wishing they could’ve known what impact their child would make on the world. Fate stole that from them and there’s nothing that will ever give them an answer to that. You guys were dealt a rotten hand and realized your time was limited with precious Holden. You chose not to take that laying down and you pressed pause on your grief, gave Holden the absolute most perfect existence anyone could ask for filled with unlimited love, excitement, adventure and chicken nuggets and then you shared him with us. In doing this, you changed the outcome and you now KNOW what an impact your Sweet, Precious, Sassy Super Hero Holden left on this world. How many lives he’s touched. How many eyes he has opened. How many people now stop and smell the roses because his time to do so was cut short. How every time we see a cement truck or a police car or a fire engine we will think of your sweet boy. How each time we see a duck or a hamster, your beautiful baby’s face will come to mind. I could go on for days about how many ways he has touched all of our lives… hundreds of thousands of people! So please please know that in your hardest of times, sharing Holden with the world was a gift you never had to give, but did so with such an unselfish love and because of it, he changed our lives! He made his mark! And he will never ever be forgotten 🤍

    Shannon Souther
  • I gasped No! and proceeded to sob for the next 20 minutes. You have set an example I will never forget and hope to emulate.

    J P
  • Oh Holden, I am so sorry. So many hearts are broken over this devastating loss. He captured the hearts of so many and his story did not go unheard. So many including myself loved Holden so much with out ever meeting him. What Holden went through was not fair. No child should ever have to experience what he did. I pray one day there is a cure so no child has to go through this.
    I bet your hitting some balls up in heaven and putting sticker everywhere.. watch over your parents… they still need you.. fly high sweet angel.

    Samantha Swink

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