Catching up with a C.U.R.E. Family...

A Word from Diane…

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You may be familiar with our family -- we are the Featured Story on the C.U.R.E. website.  We were incredibly honored to work with C.U.R.E. to share Evan’s journey and our story of the love and support we received from the time of his Acute Myeloid Leukemia diagnosis in October 2018 until he rang the end of chemo bell in June of 2019.  Unfortunately, Evan’s journey has a part 2. 

Evan was 8 months out of treatment.  He finally had blood work that showed everything in the normal range, and he had gained back the weight lost during his 6 months of chemo.  He was back at school in his junior year and enjoying a sense of normalcy.  Cancer was in the rear view mirror.   

Two days prior to Christmas, I noticed a bruise on Evan’s elbow.  He had gone ice skating with friends.  He fell, and in his words “mom, it was epic.”  A week later, we noticed that the bruise had become much larger and was a greenish color.  It gave us pause.  The first week of January, Evan starting having nosebleeds, but he is prone to them during the winter.  It couldn’t be, could it?  The bruise, the nosebleeds?  Then, on the evening of January 7th he told me he was cold and couldn’t get warm.  My husband and I shared a frightened glance.  We had an order in for blood work, so I asked him to go to the lab right after school the following day.  He called me that afternoon and begged to go to practice for the school musical instead.  He promised to go first thing in the morning.  We decided to let him take this last evening and do what he wanted with his friends.  Deep down, we already knew.  And, on the morning of January 9th, our fears were confirmed.  He had relapsed and we needed to bring him in immediately.  There were large chunks of silence on the drive to the hospital punctuated by Evan’s occasional comments.  “I’m going to miss my church confirmation.” “I’m going to miss the school musical, ski club, the Vermont trip.  Again.”  Yes, my sweet boy, you are.  Again.

Walking onto 7 North at Golisano felt oddly like going back home.  We were surrounded by all of the same incredibly kind and wonderful people who were there for us a year ago.  Basically, we knew the drill.  We knew what to pack and how to settle in.  We knew C.U.R.E. would be right beside us again, and sure enough, we had a parent advocate in our room within an hour of being admitted.

This diagnosis has included two inductions – chemo and then recovery, about a month in-patient for each induction, just like the four inductions he had for his first diagnosis.  We’ve got this.  We know how this works.  However, this time is that he needs a bone marrow transplant.  This is new, uncharted territory.  I spent time reading the information that was provided to us, but found that in the early days of his relapse, it was too much information to absorb and too much to bear emotionally.  I had to put it aside.  We decided to live each day as it comes and deal with what is next when it gets here.  We also learned from his first diagnosis that you need to have some humor and fun.  Embrace this for what it is, and on the good days, be silly.  In Evan’s case, that has meant some funny cancer t-shirts, pranks with his nurses and dying his hair blonde, bright red and then blue.  Thank you, C.U.R.E., for making the hair colors happen!

I kept a daily journal during Evan’s first diagnosis which included a list of all of his blood work results, what meds he was on and how he reacted to them, how sick he was or wasn’t.  I also wrote about how I felt.  I grabbed it and brought it with us.  I could track exactly how many days during each prior induction it took for his ANC to start to rise.  I could apply all of that prior knowledge to his treatment this time.  And it helped with the emotions I was going through to read the words I had written a year ago. 

We have met so many families during this journey.  Some we have met only via Facebook, some on the unit, some through C.U.R.E.  When you have a child who has been diagnosed with cancer, you instantly become part of a community that you never knew existed.  It’s a community you never wanted to be a part of, but one that you wouldn’t trade for the world.  We draw strength from this community.  We share each other’s good days and bad days.  We cheer each other’s victories, and grieve each other’s losses.

We are now less than two weeks away from his bone marrow transplant.  We are feeling anxious, scared and even excited.  We are truly amazed that a stranger is going to give our child the gift of life!  We are spending every moment as a family (not hard to do given the quarantine for the COVID-19 virus!) and enjoying this time.  Soaking it all in, really.  We don’t know for sure where this journey will take us next, but we are ready for the ride.  We are Evan Strong!

UPDATE: Evan underwent his bone marrow transplant in late April. He is on the road to recovery, but Diane and Evan are still at Wilmot waiting for his numbers to climb. We at C.U.R.E. are sending our well-wishes to our friends and are looking forward to more updates as they become available.

Cure Kids Cancer