Relapse and FEAR.

Relapse and FEAR = Childhood Cancer Bully’s

I remember the moments when I heard the news that one of the children I follow and support has reached remission, or NED.  It is a powerful bubble of joy that erupts from in me… almost a giddy.  It is compressed and makes me feel so excited.  I am excited for the life that those kids and parents get to LIVE now… not be in and out of the hospital, no longer rushing to the ER for a fever and losing that last physical hook up to cancer- the port.  I feel relief for their families and for myself, I don’t have to worry for them so much.  I get to see them get on with ‘normal’… well as normal as you can be after having the experiences that come with childhood cancer. 

I guess mixed into that bubble of joy and giddy… is a big chunk of relief.  It is physical the release when I hear that news… like I carry of those children and parents and siblings inside my being and then when they achieve remission I can let go of the worry part.  I can honestly only imagine what it feels like to be the child who hears the words “You are in remission” or “We find that there is No Evidence of Disease”.  I imagine that their joy bubble explodes; that joy and excitement and relief fling out of their inner being.  I can only imagine what a momma hears when she hears those words, and feels that bubble explode.  For the first time in so long she can see some semblance of future, of plans.  All the world that was put on hold for this family during this time of fighting and hurting and living in that very moment… looks different now.  A family can start in that new and dusty territory of living right then and moving in the ‘normal’ world.

I also know with those words comes some anxiety… there are no longer constant check-ups and labs, tests to know the status of your child’s health.  You are on your own… out there in that world of ‘normal’ that so many just live every day.  Overtime though some of that ceases… and your family melds back into ‘normal’ society.  I love seeing these kids at sports games and creating amazing art, singing at concerts and going away to college.  I have seen these kids when cancer was keeping them tired, sick and in the hospital… it is amazing to see them grow and change and become. 

Fast Forward to another part of childhood cancer- relapse.  Hearing that word evokes a totally different part of me.  Imagine the part that deeply wails at the missing of my daughter… this is the part that is activated when the word relapsed enters the ‘normal’ of these families.  Instead of a bubble of joy that is released, and relief follows… I carry a big ball of different emotions.  I am angry that cancer interrupted life AGAIN.  I am sad that all of those terrible treatments and painful experiences will happen again.  My heart hurts for the child and their family… for the college that will be missed, the concerts, the sports games, the proms, the friends… the holidays.  All of the things we all live and enjoy pretty regularly are again set aside for treatment and hope…

I hate the fear that comes with childhood cancer.  I hate fear… it is a bully.  Fear holds us back from so much, and mars our time.  Imagine fearing that every.single.bruise is cancer, every stomachache, every headache… that is part of the ‘normal’ of childhood cancer families.  Fear infiltrates all of life for these families.  The weeks before a scan is hell for families- Scanxiety.  Fear that on this scan they will find something, that this ‘normal’ is short lived and cancer is still waiting. 

I can only imagine a child hearing the words relapse… of a momma knowing the fight that is ahead of them again.  Relapse goes along and steals the ‘normal’ and regular that their child was building.  After all of the work and time and energy that our child put into fighting cancer and getting better… and relapse brings back the nightmare.  It breaks me to my soul… and fear takes over many of my thoughts.  I hope and pray that relapse will be followed by those coveted words… remission.  I pray that ‘normal’ can return and all of that messy becomes a thing of the past- like way back in the past.

Last week one of ‘our kids’ relapsed.  I guess ‘our kids’ is the wrong term… she really is a lovely young woman.  She was in college, in Canton, NY, the first time she was diagnosed.  Markel isn’t exactly a child, but she is an amazing and inspiring young woman.  Markel missed lots of normal… college and parties and cramming and summers off.  She instead got a port, trips to the hospital, chemo that took her energy and a STEM Cell transplant that gave her a new ‘birthday’.  While her friends were out building lives, and getting coffee… graduating and moving on she was trapped in hospitals and home keeping germs away from her immune weakened body.  She and her momma shared much of her journey and the ‘normal’ they were living at and around Albany Medical Center.  I loved seeing her dimpled smile… I know it was hard to smile so many times.  Her bravery at sharing her journey and her lovely bald head was inspiring.  Cathy and Markel were quite a team, working together at fighting cancer and living and raising awareness…

I was elated when she was done with her STEM cell transplant and treatments.  Seeing her hair grow back and her smile remain was such a positive reminder of the type of people this journey creates.  Markel lost friends to cancer, she has such a young body and mind to carry such grief… but she does she carries it and she lives for those friends.  I loved Cathy, her mom’s, super normal and regular posts about birds and cats and humorous memes.  I got to taste a bit of their ‘normal’ this past year.  My bubble of joy and excitement was fulfilled…

Relapse.  Normal has changed… all of the normal she built is different.  All of the sudden instead of coffee with friends or enjoying dinner out; it is back to the hospital for a long stay.  Stupid Cancer.  I hate how it hides and creeps back… how it continues to take time and energy from these families.  I hate how in moments life changes again… it isn’t fair.

I am reminded, though, that nothing in this life is fair.  We all have different journeys, different hurdles and adventures.  We don’t often get to understand the ‘why’ only that we need to trudge through and climb on… enjoy the time we get to walk and look around and smile.  My world is forever different because of childhood cancer, so is Markel’s.  Her journey is altered and different… it also includes the bully’s childhood cancer and fear.  My adventures, hurdles, mountains and beautiful views are different than Markel’s and Dante’s and Devin’s and Tyler’s and Catie’s… all of them.  Nonetheless childhood cancer took our ‘normal’… instilled a fear in many and changed our pathways.  I will never hear the words relapse… DIPG doesn’t relapse.  The plan and journey are different for all… I just wish I could make it easier and take that cancer away. 

Relapse has struck again… I will hold on to my pile of grief and scared and angry until I hear the words remission.  I will pray for relief and that bubble of joy and excitement for the normal… send love and support and positive energy to our Markel… to her dimpled cheeks and lovely mature self.  What grace that chick has…

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