Myles’ Story

Because she does it better… I am going to let Laurel tell you about Myles Cancer Journey… and their navigation of grief.  Then read on- Marcelle wrote about life and cancer with his missing twin.
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Funny how things and life dance to a beat that two people clearly heard, when they weren’t together.  After my last blog post for Childhood Cancer Awareness month, about Myles and his cancer journey from ages two to nine-when he passed; I thought to myself that it was one perspective. I believe it was his perspective.  I decided, at that moment, to write another piece from Marcelle’s perspective (Myle’s twin).

The next day, my dear blessing Erin, asked me if I thought Marcelle and/or I would like to guest blog for her. I said yes, but would need to ask Marcelle.  I asked and he said yes.  His piece will follow mine.  His piece is written as a fourteen year old young man who has lived a thousand lifetimes with and without his brother.  Mine is written through the eyes of their mother who witnessed every moment of the journey.

Myles and Marcelle’s Cancer Journey

By Their Momma

As I look back over the past 15 years, I would say definitely, without a doubt, that I had the honor of birthing a pair of angels.  When they were born they were immediately obviously different. Myles had a full head of dark curly hair and even at 5 pounds managed to have chubby cheeks.  Marcelle also at 5 pounds had the finest, straightest hair, a pointy little nose and his fair skinned cheeks were rosy.  They shared a bassinet, then a crib- not because they had to, I had two, they just were better together.   As they grew Myles was a left handed, and Marcelle was right.  Myles was jovial and impish while Marcelle was more serious and reserved.  I remember on many occasions saying they were the perfect yin and yang; that if they were one kid they would be one super perfect kid of awesomeness.  They spent every moment of their days and life together…except when Myles was hospitalized. I am sure Marcelle doesn’t remember the early days of his diagnosis, but I feel like he was affected by it.  I dropped Marcelle at preschool, took Marcelle to the doctor and never came back for 8 days.  Thank goodness my dear friend Michele picked up Marcelle and took him into her home for those 8 days.  At the time Marcelle was nonverbal and was doing sign language.  My head and heart don’t really want to think about what he was going through in his head while Myles and I were at the hospital.  He visited us while we were there but, he wasn’t at home with his mom and brother like he was used to.

For the first almost three years of their life, I watched Myles be Marcelle’s teacher, protector, brother and friend. Myles was discharged from the hospital on their 3rd birthday and we stopped by the preschool to have cupcakes and so I could bring my Marcelle back home with us and the dynamic duo could be reunited.  From the moment that Myles was diagnosed with a brain tumor, WE had cancer.  It was the three of us, at every radiation, every blood draw, every, and every check-up. Marcelle stayed with Michelle when Myles had chemo and when he had to be isolated because his counts were low.  But the rest of the time we did it all together.  Everyone was great.  If Myles got a sticker or a lollipop, Marcelle got one too.  For every, bear, blanket, game, toy that Myles got Marcelle got one too.  They never knew that cancer was bad because as far as they knew, they had it good.

When they started elementary school they were in separate classes.  I remember the teachers telling me that when they would see each other out on the playground they would run towards each other with open arms and end in an embrace like they hadn’t seen each other in years.  I remember when one was tired they would like at the other and say, “Ok, it’s time for US to go to bed” and off they would go.  I loved watching their relationship, their love for each other.  When we traveled, I would look back at them and there they would be in their car seats holding hands.  At night I would check on them in their room and one will have come out of their bed and joined the other and there they would sleep, curled around each other.

As they got older Marcelle would help pick out Myles glasses or go with us to get new hearing aid molds and would help pick the colors.  My favorite molds were the orange and green ones, each of their favorite colors swirled into one.  Myles was clearly extroverted and oddly confident, for all he had been through.  I remember a little girl asking me what he thought about the line in the back of his head (he had a zipper from the surgery to remove the tumor) and I said “I don’t think he knows it’s there because he can’t see it”.  Marcelle just kinda looked at me, like he still does to this day when I say something he disapproves of (which feels like every day).

Myles cancer journey brought him celebrity status.  He was on radio shows and Marcelle was right there with him.  He did print ads, and commercials.  There first commercial was for Make A Wish…I still have that one. It was filmed at their pre-school.  Myles and Marcelle are on the local Ronald McDonald House business card.  They have given back to the Melodies Center and Starlight Starbright- always together.

My favorite story involves Myles being asked to be in Melodies of Christmas.  At the end of the night, the children who are patients at the Melodies Center come out and sing Silent Night.  The first year that Myles did it, Marcelle sat in the audience with me.  He complained the whole time because Myles didn’t memorize the words and Myles wasn’t singing. You guessed it, the next year and every year after, until Myles died, Marcelle managed to be a part of that show.  He joined his brother and the other patients signing Silent Night on the stage.  I would often chuckle about the poor people reading the program and looking at the names.  They were thinking that two brothers were up there singing – how tragic it had to be that brothers were also patients at the Center.  This would be a time I would get a disapproving look from Marcelle…  I was so proud as I looked on in the audience.  They were both so proud to be able to participate and give back in this way.

It’s these moments that show me that Myles’ cancer story is just as much Marcelle’s cancer story.  They have been together from before they were born.  My greatest fear about Myles’ death was how would Marcelle ever go on without him? My heart broke into a thousand pieces a few times along the way.  First when I told Myles older brother (who was 28 at the time) that Myles was going to die and whatever was left of my heart was destroyed when I had to tell Marcelle.  No parent should ever have to do that.  Ever.  It was awful.  The worst thing ever.  The sound that came from deep inside Marcelles body will ring forever in my ears.  I waited for as long as I could to tell him.  I knew in January and I carried that weight until July.  I don’t remember the days… I feel like Myles died within a week of me telling Marcelle.

I remember their last encounter.  Marcelle wanted to go spend the night with friends and before he went Myles asked him to feed him some ice cream.  I have a picture of Myles in his recliner and Marcelle smiling next to him, with a bowl of ice cream on Myles’ lap.  They hugged and kissed and said they loved each other and off Marcelle went.  Within hours of him leaving Myles closed his eyes and his breathing became sketchy.  His oncologist would come to my house and tell me that it was the beginning of the end- that it could go on like that for days or even weeks.  Myles older brother traveled back and made it just after midnight.  I told my sweet baby that it was okay to go and that we understood- while I was talking I realized that he was listening.  At that moment, he took his last breath.  That next day when Marcelle came home I had to tell him that Myles died. He said “ok”.  I asked if he knew what that meant.  He said “yes” and then went out to play.  My sweet 9 year old did the only thing he knew how to do, and that was to be 9. It took several years but Marcelle eventually told me that he knew Myles was going to die that day and that’s why he asked to go spend the night away.  I told him that I wished he had told me because I had no idea- I’m pretty sure I got the Marcelle look again.

I am so proud of Marcelle because he could have crumbled, but he didn’t.  He went on to the 5th grade and gave his brother the most amazing tribute by singing ‘Smile’ in the local school “talent show”. There wasn’t a dry eye in the house.  He commanded the stage, gave a short intro, dedicated the song to Myles and sang accapella to standing room filled audience.  Marcelle is in tenth grade now and the emptiness that Myles left in our family is still very present.  Birthdays are happy and sad.  A constant reminder that one of my children is getting older every year and his twin brother is forever 9.  Holidays suck.  No other way to put it…they just do.  Everything is a mix of schizophrenic energy…another year of school…yaaay but Myles is missing from the picture, another right of passage…yaaaay but Myles is missing this right of passage.  This is our life now. We honor Myles through his namesake foundation and by telling his story.  Marcelle honors Myles every day because it’s tough to be Marcelle- yet he keeps on getting up and being the best Marcelle he can be.

So that’s my story, the Cliffnotes version anyway. I realize I never asked Marcelle about how he felt about his journey with his brothers cancer and eventual death, so I did.  I asked him to put it in words.  And true to form, in a few words, he told his story.  We are the faces of pediatric cancer….

 

Myles’ Journey

Written by Marcelle, his twin brother

Losing anyone in your family is hard to deal with. But losing your twin brother is really hard. I lost my twin brother Myles to cancer five years ago, and when he left, parts of me left too. There’s something unique about twin siblings that other siblings don’t have. Myles was my best friend; we never fought, we were always there for each other, and when I was told he was going to die, I was absolutely heartbroken. Not a day goes by that I don’t think about my brother. Not a day goes by that I cry myself to sleep in agonizing pain. But I do know that he is in a better place now, pleasing the Lord like he pleased me.

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