Remembering DREW

Josh and I were asked to be a part of a parent panel for a "Death and Dying" symposium for Residents at Mayo this week.  The young doctors in Pediatric Medicine will be learning about end of life care, and they thought we would be a great resource to these doctors as part of the panel to explain how it feels on the other side of that situation as parents.  I was really honored, excited that they thought of us.  Looking forward, this is the kind of thing I'd love to do.  Being involved in this difficult world, sharing our story, our experiences and helping others.  Whether that's with families going through it, as kind of a peer resource for all the different aspects childhood cancer that are so challenging. Or in this case, helping the doctors too to learn from a willing parent what is helpful and what isn't, and how to approach some topics/sensitive issues with families.  So I'm so thankful for this opportunity, and for the hope it gives me for what my future may hold.

In preparation for the symposium, one of the coordinators asked me to give her a brief introduction to our family that she can use to introduce us to the group.  She specifically said to "go beyond just the medical record.  We can read that.  Tell us about him, what he liked, what he played with, what made him laugh, what he was scared of".  As I was working on this, I struck me that I really don't think about him a whole lot!  I think a ton about how I feel right now, what he taught me, what he seemed to embody...maybe his legacy as opposed to his actual life?  Sitting and recalling different aspects that made up Drew, I could feel it was different.  And just like when this certain two year old friend of Drew's is in the house and brings the memories to life again, remember him, brought him back to life.  It filled me with gladness, he really was a sweet, charming, playful boy!  It's that bitter-sweet feeling, that brings happy tears from the joy the memory brings, but also the sting knowing there will never be any new memories made with him in this lifetime.

So many of you only know him from what I've wrote, you never got the pleasure of actually being around him.  (Something for you all to look forward to in Heaven!)  So I wanted to bring him back into this blog too, after so much reflection on my own feelings. 

First off, he was so laid back.  All the nurses upon first meeting him in his bed at the hospital would note his knee up, leg crossed, arms above his head "just chillin" pose, and chuckle. What a sight! He always was this way, and since Molly is a *little* more high maintenance, whenever they were together, it really highlighted how relaxed Drew was. Its only recently I'm seeing how kind of bossy Molly is.  I never noticed because Drew always just did whatever she told him to! I used to joke Molly and his future wife would probably not like each other, since he'd probably find someone who bossed him around too.  He was just such a people pleaser.

They have a  "treatment room", where they do any uncomfortable, painful procedure so that his room, his bed, was always a safe space.  I wouldn't go along when they took him back there.  It was hard to watch, and I felt like it just made it worse for him.  Kids do better when their mom isn't there wincing and acting upset too.  And apparently he didn't need me anyway--he'd always come back smiling and the nurses would go on and on about how cooperative he was. 

He loved attention, and getting a reaction out of people.  After so many days in a row at the hospital together, his antics would lose their cuteness to me.  But when a new nurse came on at 3:00 or 7, it was like you could see him come to life again--a new audience!  He'd do his "hot blanket, please?"  "cold water, please?  Thank yoooou!" and they'd "awwwe!" all over him.  And he'd eat it up.  One morning I woke up and counted 5 blankets in his bed with him from a night of sweet talking the nurse into bringing him hot blankets every time she came in.  The music therapy lady, our child life lady, pre-op nurses, anesthesiologists, receptionists, even the Oncology team themselves had little inside jokes with him. 

His size and energy was always something staff were amazed at as well, and was probably something that we took for granted. He was diagnosed very weak and sick, but after several weeks with our friend his "tubie" in his nose giving him the nourishment he needed, he really thrived.  He was always tall (Molly is too, they get that from their dad), but he was also solid.  Accept after the very first hospital stay that he needed a few days with a cute little pint-sized walker to get going again, we never talked to a physical therapist much again.  I know some going through this treatment plan are still seeing physical therapy years out.  He topped out in the 97 percentile for height and weight.  I remember asking if that was for "normal" boys, or some kind of cancer patient scale?  No, that's all two year old boys.  He reached 38.5 lbs the last I remember, at just 2 years old!  The nutritionist was another specialist we didn't talk to much, accept to be told to keep up the good work.  There was a Radiation Oncology nurse who, meeting Drew after he just completed 6 chemo cycles, surgery, and back to back bone marrow transplants, was amazed at his strength and energy.  "he's the strongest Neuorblastoma kid I've ever seen in my 28 years." Wow.  What a gift.  That "tubie" and Drew's determination to not miss out on life let us DO so much more when we were home, instead of being weak and sick.   So many memories together, fun was had, as a family that I am thankful for every day.

He also was more sensitive, the most "snuggly" of our family (which is at the not-so-snuggly end of the spectrum).  But he'd sit with nurses, and staff without much of an introduction.  After a surgery one time, looking him over in the post-op recovery room, I notice what looks like glitter on his forehead.  What in the world?  Is there a party going on back there?  Then the nurse comes in, and I see all of her shimmery eyeshadow.  BUSTED!  You were canoodling with that nurse back there, weren't you Drew??  Geez... Another time, I came back once to his room when I thought he was napping to find him snuggling in just a diaper with a nurse while another one was changing his bed out (apparently he had gotten sick all over), and the nurse asked if he wanted to go to mom, "No, I stay with you." Patting her chest as he lay on her.  Which was fine with me.  Not that I wouldn't have snuggled him, but its like he knew who needed the love.  Who was would most benefit from his love at the moment.  I remember going to sleep beside him in the cot at the hospital and him saying, "How 'bout a kiss, mom?"  And then him leaning over, presenting his face to be kissed by me.   Most of the time though, he was satisfied just holding my hand.  When he felt awful, when he was going to sleep, and even on his final night on earth, as it got harder and harder to breath...

He'd hear children crying in down the hallway and would stop and listen, and note, "baby crying..." with a sad face.  He really had the biggest heart, and trusted people like he'd never been hurt.  I really think it was the love of Christ that he just allowed to flow through him.



Hopefully this gives you all a good feeling today reading about who Drew was too.  And that if it also brings sadness for what has been lost, like it does me, remember like I do that he's still this same Drew, just not here!  I wrote all this in past tense, and listen to myself say "he was this way" and want to correct myself, he still IS all these things.  As I explain to Molly, the part that made Drew Drew, that sparkle inside of him, is what still lives on in Heaven with Jesus.  His body is just not working anymore.  He still IS this laid back, attention loving, energetic, lovable little guy that he was here with us, he's just in a different place.  I would guess excited to have a new audience to try his antics on!  I can't wait to be around that bright light again that sparkle of life.  But until then, I am excited for this new place I've reached where I can really think about who he was, the memories I have with him, and there's a place in my heart that is happy again, remembering.  And even if it makes me cry at the same time, I will be thankful for the pieces of Drew I still have with me.   Thankful that I got to be this little boy's mom here on earth, even if it was for not even three years...

Here's the introduction I ended up with for the symposium.  When I got it together, I sat and read it and smiled through the tears streaming down my face... 

Drew Becker was a little boy that lived each day to the fullest.  He was full of life and love and energy.  He tolerated a lot, until he couldn’t.  On January 21^st, 2016, he was diagnosed with Stage 4 Neuroblastoma.  He began one of the most intense treatment plans for childhood cancer which included 6 cycles of chemo, surgery, the first tandem bone marrow transplants at Mayo for Neuroblastoma, and 13 treatments of radiation.  Being diagnosed before his 2^nd birthday, he really developed a lot in his last year, despite all of the treatments.  He went from a baby to a little boy.  Literally!  He got up to the 97^th percentile for height and weight!   He was solid.  One nurse said he was the strongest Neuroblastoma patient she’d seen in her 28 years in the field.  He began to really talk, and his personality emerged even more.  He loved boy things—big dump trucks, diggers, trains and John Deere tractors.  His smile could light up a room, and how well he handled procedures and scans was legendary.  He did everything that was asked of him, many times with a smile on his face.  After his cancer stopped responding to treatment, his family made the decision to let him live what all agreed were most likely his final days with his family, celebrating Christmas and going on a Make a Wish trip to Disney World.  He died 10 days after they returned, after only 5 days in the hospital, 3 months shy of his 3^rd birthday.

That pretty much sums it up!  If that isn't the shortest, sweetest, and saddest story ever told....