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.  

 

175 comments

  • Hello my name is viola I have special needs your story teach my heart ❤️💜

    Viola
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  • I am so so sorry. My sincere condolences to your precious family. May you find some comfort in knowing how much he was loved.

    My nephew lost his battle with brain cancer 4 years ago.
    It was called supra tenurial primitive ectodermal Tumor in his left temporal lobe.
    He also was “cancer free” briefly. Cancer is a monster.
    Again, I’m so sorry.

    Debbie Campbell the
  • I read everything with big eyes and a deaf scream of grief in my head, but the last paragraph literally gives me chills…. It s awful, and the way you write this story, makes ppl who read it, imagine just a second the nightmare you went thru……

    Angi

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