Time

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.  

 

174 comments

  • I found Holden through TikTok back when the pandemic started in March I was at home without work and learning how to home school my 7year old son. Your precious little boy touched my soul. I’d always look to see updates from him. He made me smile and laugh on the good days and broke my heart on the sad ones. Mom and dad you have gifted us the sweetest purest most sassy little angel with every video memory you shared. I’ll remember your Holden every time I see a cement truck or drive by a golf course I’ll remember him at the park with my son when we feed the ducks. I’ll remember the sweet little moments when he would say besito or I love you mi amor 🥰. I saw my son in your son and I fell in love 💛 may his light always reach your family Rest In Peace sweet Holden 🕊💛

    Kleysi
  • My heart is so broken! Thank you all for sharing his life with us! It must have incredibly hard. Watching this young manhandle what he had to do every day, gave me inspiration. Watching you as a family inspired me as well! I know he is out of pain now, however, the grief and sadness are just beginning for your family. Please let us know how we can support #holdenstrong as well as your family! You have all touched all of our lives! Grief is not easy and it comes in cycles. allow yourselves to feel whatever you need to feel. Much love and prayers for you and your family.

    karin adams
  • Dear Holden’s family. You don’t know me but I have become a friend through this crazy thing called social media. Why, who knows, but you have shared a special little boy with so many of us looking for something. Ever since I stumbled across Holden I would look forward to seeing what he was up to. There were good days and there were sad days and bad days. So many of us felt your pain but not the way your family has. Your pain is so indescribable, it’s real and it hurts. Your son touched my life. He brought smiles and laughter but he also made his tough days real. For such a young person your son made an impact on so many for some reason. I feel maybe this isn’t making sense but please know I adore your Holden. I will continue to wear his bracelet and shirt and remember a little boy who brightened my days, who made me appreciate the small things. I will never be able to see a duck or cement mixer without thinking of him. Be gentle to yourself. I pray that God brings you comfort, rest and sweet dreams of your beautiful family. With love from a friend.

    Karen Stegman
  • To Mullen Family: I woke up this morning to look up on Tic Tok on the lastest on Holden and it broke my heart to see what was posted. Chad and Alex, I can’t start to imagine what pain and heartache you as parents are going through. Just know that we are all here for you during this trying time. Thank you for bringing us into this world and life of Holden and sharing him with the world. To his brother and sisters: just know that Holden is now looking down on you and is your guardian angel. Just remember all the good, fun and crazy times you all had with him. Take care of those ducks for him. Know his spirit is in all the pets he loved. Just remember to close your eyes if you are feeling sad and feel the wind and he will be there. He will always be in your heart and memories. Again, thank you for sharing his story, his life and all the memories you have created with him.

    Jackie Morales
  • 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!

    Tom

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