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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Lola’s Story… a tale of DIPG

The thing is, cancer steals our kids.  We punish every other thief, we get scared when they are close to us and we hate how they violate our personal safety.  Cancer does this and keeps doing it… you are not scared for your child until you realize that this thief does not discriminate…

I love Lola, and her WHOLE family.  I am grateful to God that He connected us.

The day of Lola’s Best Day Ever we tried to create ‘Heaven’ for Lola, I am sure we failed compared to the Heaven Madeline lives and that Lola will see… but we tried.  I remember a little conversation Heather, the helicopter pilot, told me about.  Lola asked her how she became a Helicopter Pilot.  Heather told her she had other plans, but one day she went up in the sky and just knew that she wanted to do just that, and she did.  Lola told her what she wanted to be, but hesitated because she knew she would not be gifted the time to grow up.

Cancer stole that…

Read Lola’s Story- today is her birthday, her gift of one more birthday was granted today.  Will her momma get to hug her for one more?

Lola’s Story

Told by Her Momma

As a parent of a child with DIPG, I am often thinking back to the months leading up to Lola’s diagnosis. In fact, the whole year prior is a time that sticks out in my mind because our Lola was beginning to find her voice, her path, and thrive in our new home.

In May of 2015, the year before Lola’s diagnosis we had just moved back stateside from Germany. It was a huge adjustment, but as a military family we have learned to acclimate quickly and keep moving forward. We spent the summer adjusting and discovering our community and new home before school began for the children. Soren, Lola, and Ellis thrived in their new schools while Izel stayed home. The new experience can be a little bumpy but they kept pressing forward, learning and growing. Lola ran for treasurer of student council the first weeks of school even though she didn’t know anyone, and believing she could win. Unfortunately, she didn’t, but she made plans for the following year to run for President of student council. Throughout the 2015-2016 school year Lola also joined basketball, soccer, battle of the books, math & science club, and Little Flowers. In the summer of 2016, we were active outdoors at the splash park, camping, riding bikes, going to festivals, fishing, hiking, playing soccer, visiting with friends and traveling to visit family.

When I look back at the summer of 2016, I think I should have known something was happening with Lola. The signs were there. They were small but they were there. She lost balance, was more tired than usual, had headaches that were different than those she had before. I thought it was just puberty.

The first week of August 2016 we visited family in Chicago and pretended to be tourists in our hometown. We took a guided tour of the city, we visited family, and went to Medieval Times. By the end of our time in Chicago I noticed Lola’s left eye did not move as it should. I thought maybe she needed more rest or she might have had too much screen time. I asked my sister to verify what I was seeing. Maybe my eyes are playing tricks on me? It was such a small thing to see. It wasn’t immediately obvious. Yvette said she noticed it as well. When we returned home I made an eye appointment thinking she needed glasses. The week and a half leading up to the eye doctor appointment the left side of her face became paralyzed. I remember hoping that it was her eyesight and nothing more, but there was a nagging feeling that something just wasn’t right.

The eye doctor said her eyesight was perfect and to see her pediatrician since she is experiencing some headaches. We were able to get an appointment with the pediatrician fairly quickly. Our pediatrician asked a series of questions and had us travel to the local hospital for a CT scan. After being sent to the local hospital, then an ophthalmologist, we were finally referred to the Children’s hospital in Syracuse for a MRI. The possibilities of it being something minor changed with each appointment to something life threatening. Lola was admitted on a Wednesday and we waited until 1am Friday morning August 26, for her MRI to take place. I prayed. I prayed a lot that it was nothing serious. By 9am Friday morning I was told the results. I asked when her surgery would be to remove the tumor. The answer was surgery is too dangerous. Lola’s brain tumor is deadly and about 10% of children will live past 9-12 months. After 24 months only 1% survive. I asked for a priest to perform the sacrament of the sick and called Agustin.

When I look back, the years leading up to her diagnosis were perfect. I didn’t know it but looking back I can say they were perfect. Our struggles, our joys, our health, our pains…everything up until Lola was diagnosed was a perfect life. Perfect because Lola was with us and had a future. Our dreams, her dreams…they all disappeared after she was diagnosed. DIPG stole our daughter.

Lola understood the diagnosis and was so full of hope and God’s grace. As the school year started, she began radiation treatments. All of our family came in from Chicago to celebrate what we thought could possibly be Lola’s last Birthday. It was wonderful and in Lola’s words, “It was the best birthday ever! Can we do it again next year? Or how about every year for my birthday?” The last time she had her entire family with us to celebrate her birthday was when she turned one year old. On November 12 she had her Confirmation and the next day was her Make-a Wish.

In December of 2016 she was on trial at St. Jude. Lola chose to do the trial to hopefully help children in the future. We knew it wasn’t a cure. We knew it was to test the side effects of two drugs taken together. The trial was a spirit killer. Lola persevered for 5 months on the trial. I don’t know how she did it. It took 5 months for her to come to a breaking point. Five months of gross tasting drugs, rapid weight loss, constant nausea, headaches, vomiting, diarrhea, pokes and blood draws, dehydration and hospitalization. The side effects were terrible. During her trial she also struggled with not going to school or seeing her friends. She struggled with not participating and missing out on life. On April 24 she made the decision to stop the trail. Lola’s tumor responded extremely well to her first round of radiation and there is no evidence that the trial helped to give her more time.

Lola’s life and health after the trial has improved significantly. She began physical therapy so she could gain her strength back. At that time she had become so weak it was difficult for her to walk up the stairs in her school. She was able to attend the last two months of school and begin again. It was emotionally difficult because the dynamic with her classmates had changed and she was lost when it came to schoolwork. Still, she moved forward.

 

This year was spent doing as much as possible with Lola before her 9-12 month diagnosis anniversary. It truly was a whirlwind of adventure, opportunities, sightseeing, and travels. Once again, the first week of August found ourselves in Chicago and we began seeing the symptoms progress. At first, like last year, I thought she needed more rest. Deep down I knew. Like last year, when we were home I called her doctor, this time her oncologist. An MRI was scheduled for August 10th, 16 days before the anniversary of her diagnosis, the results showed progression. Re-radiation was scheduled immediately and a plan had been set in place for Avastin infusions every 14 days.

Lola began her school year with no aspirations of student council, basketball, or soccer. She has left behind her physical days as she is a bit wobbly and struggles with some double vision. She looks forward to helping out with student council, cheering the basketball team, joining the board game club and Science Olympiad. She still dreams big, but she has made some adjustments. I can’t imagine knowing you have a terminal diagnosis, dealing with the nuances and emotions that being in middle school and a pre-teen (soon to be teenager) involves. It is such a hard time in life and it is not made easier with a terminal diagnosis. Lola with all her prayers, hopes, and grace rises above and continues to move forward.

September 24 is Lola’s 13th birthday. Last year, I worried she would not live to see her next birthday. I have prayed for her to live long enough for one more Christmas, one more celebration, one more milestone, just one more. I still pray. We are very fortunate and blessed that she is doing so well with minimal symptoms from her tumor. In October, she will have an MRI to find the results of her last round of radiation. As of today, Lola’s prognosis is 3-4 months, which lands in November or December timeframe. We pray for one more Christmas, one more milestone, one more birthday, just one more.

We celebrate her birthday, just the six of us today, blessed and grateful that we were given one more birthday with Lola and pray and hope for one more…

 

Ryan’s Story

Many of us meet and spend our lives with our soulmate… the one we were made for.  Imagine meeting yours at 16 or 17, with all the excitement of being young.  Imagine navigating a journey of Leukemia  together- through the fear and the sick and the joy.  Imagine all that you miss- prom, dates, parties, college weekends… all that and more.

Imagine if your soulmate dies.

This is Ryan’s Story… told by his soulmate Jenna.

Ryan’s Story

By Jenna

Ryan and I were 18 years old when he was diagnosed with Leukemia. We had been dating for 15 months, at the time of his diagnosis. We were finishing our senior year and had our entire lives ahead of us. We were to graduate high school in the top 1% of our class. We were going to attend Binghamton University together in the fall. We were in love and we were so very happy. We had everything a person could ever want. In nine months, he was gone.

I look back on those nine months as the slowest… yet fastest experience of my life. In the moment, time was so incredibly painful. Everything seemed so slow, drawn out, and never-ending. Especially when days in the hospital turned to weeks and when weeks turned to months. Ryan’s treatment plan (initially) was three years long. In those first months, it seemed like things would always be difficult, that he would always be sick, and that life would never be normal again. It didn’t help matters that everything that could go wrong for Ryan did. I mean absolutely everything went wrong. It got to a point where we just expected complications, and it became so difficult to stay positive when everything always seemed to work against him. We would be so hopeful about things going well and him being able to leave the hospital just- to be let down again. We became so tired of hearing bad news. There were so many times that everything seemed dark, and it became hard to see any light at the end of the tunnel.

Going through those times together, being brave together, making the best of the awful situation we faced together, made us stronger. When he was down he always had me to pick him up, and when I was feeling down I always had him. He was my rock, he really was, and I know was his. There were days we didn’t want to smile, we just wanted to cry and we did. I never cried more in my life than I did during those nine months. He lost 40 pounds in a matter of four weeks.

Watching him suffer and become so sick, it made me sick. I couldn’t eat, I couldn’t sleep, I couldn’t even think straight. All I wanted to do was be by his side 24/7, and so I was. The feeling that I would get just by being with him, it was instant relief. It all just broke my heart, he didn’t deserve to always be in pain, to always be in fear. I know how scared I was for him- so I can only imagine the fear he felt. He always put on such a brave face and never once did he complain. He amazed me. Our love is really what got us both through those difficult months. It takes a strong couple to go through all that we did during that time.

Life was testing us in a way we had never been tested before. We could always count on was our love for each other. We found joy in the little things, and nothing made me happier than being with him. He had my whole heart. I could describe our love for each other all day long, our bond was one in a million.

When I reflect back on those 9 months, everything seems like it happened so fast. I mean from the day we found out he had Leukemia it was just constant. He was diagnosed, we spent countless weeks in the hospital while I was trying to finish school, we graduated, we tried to make the most of a summer filled with countless hospital stays.   When we received the news that he would be getting a bone marrow transplant, I had to leave for college; even though college was the last thing I cared about. Ryan left for his transplant in Boston shortly after. The next three months were nothing short of a living hell.

In those three months, I lived my worst nightmare. I slowly watched my boyfriend’s life deteriorate before my eyes; while still a full-time college student, 5 hours away from him. I have an amazing family who travelled the 10 hours to get me from my college in Binghamton to Boston and then back to Binghamton nearly every weekend. However, the time I spent in Boston with him wasn’t all rainbows and butterflies.

When I visited Boston during his first few weeks, we were able to have quality time together. I am so grateful for those weekends because those are my last memories with Ryan, as I knew him.

Leaving him was the worst part, it was heartbreaking and I couldn’t stand it. All I wanted to do was drop out of school that semester so I could stay in Boston. If it were up to me I would have. I was so distracted and worried all the time that it was impossible for me to sit in a classroom without bursting into tears. My heart and mind were constantly in another place and it wasn’t Binghamton University. Ryan insisted that I finish out the semester for him, and so I did- for him.

His exact words to me were, “Cancer has already put my life on hold, I’m not going to let it put yours on hold too.”

After being in Boston for about four weeks, things started to take a turn. Ryan was moved to the ICU. He spent two excruciating months in the ICU before we lost him. I would still visit him, I would talk to him, I would hold his hand, but things were never the same.

The times that he was awake he was heavily medicated. He was placed on a ventilator for the last month of his life. In that time, I completed my first semester of college with a 3.80 GPA, and even though he couldn’t tell me, I know I made him proud. The last words he ever said to me were “I love you Jenna” on December 5, 2015.

He passed away on January 10, 2016. That last month was a living hell, and his last couple of days were just soul shattering. I look back and I don’t know how he endured all he did for so long or how I was able to stay strong for him. I realize now that witnessing his strength and bravery made it easy for me to stay strong. I never, ever gave up on him; even when the doctors and nurses were preparing me for the worst. I believed with everything inside of me, up until he took his last breath, that he would survive. When he did take that last breath in my arms, I swear someone physically ripped my heart out of my chest and I will never get it back. I absolutely wish it had been me and not him. Never have I ever experienced a pain as unbearable as the pain of losing him.

It’s hard to believe that all of this happened in a matter of nine months. For nine months, we navigated through a journey of a lifetime together. We believed that this part of our lives was just an obstacle for us to overcome, and that once he came home from Boston we would build the future we had always talked about. Little did we know that the beginning of our story would also be the end…

I feel like our story is something so awful and so tragic that people only make up stories like ours for movies. I cannot believe this is my real life. All of it still hurts. I cannot fathom the fact that I will never see my Ryan again. More than anything, I hate that his story doesn’t have the happy ending he deserves. He had so much more life to live, he had so much to accomplish. This isn’t the way things were supposed to happen. He was the most perfect person I have ever met, he didn’t deserve this.

It’s hard to believe that something like this can happen to a person like him. We were both cheated of a life that could have been so wonderful.

Learning to live without him is a journey in itself, a journey I wish I didn’t have to live. The person I love and my best friend was ripped away from me at 18 years old and I’m never getting him back. It’s hard…It’s REALLY hard. There are still days where I just want to give up… but then I think of him. I think of how hard he fought, I think of his courage and how he never gave up- I know I can survive the life I’ve been faced with. There’s no other way. I now live to make him proud, I have to. That’s really what gives me the strength to keep going, I know I’m making him proud.

Everything I do is for him.

Ayven’s Story

I have had the pleasure of watching Ayven grow… seeing the times she was so sick and to now seeing her on her first day of school right next to her twin.  She is growing to be a pretty amazing person.  I have also had the moments of broken with her mom, hearing her fear, feeling her anxiety on scan days… knowing that her mind hopes but knows her cancer could come back.  I have learned that even AFTER childhood cancer there are so many dangers ahead… chemo is not kind, steroids break down bones.  Ayven’s journey is FAR from over…

Share.  Comment.  Engage.  This is childhood cancer…

Ayven’s Story

By her ‘Momcologist’ Kim

Ayven’s story begins the same as many others. Many childhood like ailments that had doctors leaning towards a simple answer. It took us eight whole months of doctor visits until we finally got a diagnosis. Just not the one we had hoped for.

Neuroblastoma – a word foreign to our ears. What was it? What did treatment entail?  How will we get through this?

WILL SHE SURVIVE? 

A question that loomed at the forefront of our thoughts for days…months…years…

It’s a question that I was afraid to ask, and – let’s face it – even the best doctor in the world can’t predict the future.

It’s hard to explain what having a child diagnosed with cancer does to a parent. It’s hard to explain the heaviness and utter devastation that is felt when you hear the words, “Your daughter has a very large mass in her abdomen, which is undoubtedly a form of childhood cancer.”

The world as you know it comes to a halt. Many cancer parents will tell you that they don’t remember many things in the days and weeks following diagnosis. It’s almost like it is too much for the human brain to comprehend.

Ayven’s treatment was long and grueling. She endured several rounds of chemo, one major surgery, and many smaller surgeries. It took a toll on her tiny fragile body, and it took a toll on us.

But somewhere in that pure devastation there is also something miraculous. There is HOPE.  There are people who rally around you, and lift you up, and keep you going…even on the days when you feel like you can’t.

The exact night that Ayven was diagnosed, I was visited by a real life angel. She may not see it this way, but it was the one event that helped me put everything into perspective. A fellow cancer mom, who happened to be down the hall in the PICU with her son (who had been fighting for his life) took time to come and talk to me. She told me that no matter what, we had to have a positive attitude. No matter what, we had to believe.

So that is what we chose to do. Anyone that came around Ayven had to be hopeful…anyone that came to visit had to believe! We made it our mission. She was going to survive because we were going to be her strength!

We are the lucky ones. The ones who made it through the storm and still have our child to hug. We know this – and literally think about it every.single.day. We are the lucky ones whose daughter was diagnosed at such a young age that she doesn’t remember most of her treatment, hospital stays, surgeries, scans…

We are the lucky ones, who received a better diagnosis – stage three, instead of stage four.

Many times, people who are unfamiliar with pediatric cancers think that once a child is “in remission” or NED (no evidence of disease), they are healed and are ready to take on a long, healthy life. That’s where they are wrong.

While we are SO EXTREMELY thankful that our girl is here with us, she still fights every single day. Ayven has many post treatment issues that affect her on a daily basis. But we have her – and we can handle issues. Not everyone has that luxury (if that’s what we call it).

Childhood cancer research is underfunded. Our kids have more toxic treatments and less answers. We need research. We need money allocated to help our kids.

September is Childhood Cancer Awareness Month.  Please help in any way you can.

Cheyanne’s Story

The thing is childhood cancer impacts all those around the child and family.  In a moment your child’s best friend could be diagnosed with a terminal disease.  Imagine having that talk with your kindergartener- or first grader.  I thought immediately of Madeline’s friends at school and her longtime friends from preschool…

Here is a story about a girl who is now with Madeline… from her first grade friend and her mom’s perspective.

Cheyanne’s Story

By:  Brett Caito

In December 2016, close to Christmas time, I learned of a girl in our community who had just been diagnosed with a rare and terminal brain tumor.  DIPG.  She was given less than a year to live.  It wasn’t until I learned the little girls name that my life would change forever.  Cheyanne Brant.  A first grader in our Elementary school where my daughter also went to school.  My daughter Makala would talk about a Cheyanne all the time.  In fact, she asked if we could take her bowling over Christmas break.  I thought to myself, it couldn’t be the same Cheyanne, but it was.  They were in the same first grade class together.  My heart was broken for Cheyanne, her family, and my daughter.  I felt like we had to do something.  Even if it was just to put a smile on her face.
About 2 weeks after Cheyanne was diagnosed Makala and I went to Galisano Children’s Hospital in Rochester, NY to bring Cheyanne an American Girl doll.  My plan was to leave the gift at the desk and go on our way.  I didn’t want to intrude on the family at such a difficult time.  The woman at the front desk insisted we go deliver the gift ourselves…so we did.  I remember tears swelling up before even reaching the elevator.  I had done my research on DIPG and didn’t know what to expect but knew it would be awful.  When we reached her room on the 7th floor Cheyanne’s parents Ray and Jodi met us in the hallway.  They were overjoyed to see Makala.  Excited for Cheyanne to have a friend visit.  They warned of us of her condition and wanted to make sure Makala would be ok.  Makala wanted to go in the room so we did.
Cheyanne was mostly asleep.  Half of her face was paralyzed.  She could not talk, she could not walk but when Makala entered the room she stuck her little hand out to hold Makala’s and the girls just sat there holding hands while the rest of us cried.
Cheyanne was diagnosed on December 23, 2016 with DIPG.  A rare and inoperable brain tumor with a less than 1% survival rate.  Her first symptom was a lazy eye.  She had to get glasses a few weeks prior.  The tumor was discovered after she began to become weak on one side of her body and experiencing bad headaches and vomiting.  Cheyanne began 6 weeks of radiation.  She remained in the hospital for this entire time.  She spent her 7th birthday in the hospital and she didn’t get to go home for 75 days.  It seems most kids experience a “honeymoon” period after they complete radiation.  Their symptoms lessen or even subside for some time before the tumor begins to grow again.  They are given a chance to live a normal life for a short amount of time.  This didn’t happen for Cheyanne.  Sure, she began to speak again and was able to eat.  But she would never walk again.  She never became well enough to do her Make-A-Wish.  We never got to take her bowling.  She did begin to laugh again which was a wonderful sound.  Her laugh was contagious.   She had a little stuffed dog that she would always make “meow” instead of bark and she just thought it was hilarious.  Jodi would tell me stories how Cheyanne would wake in the night and would hear a “meow.”   Cheyanne just wanted to walk again.  She couldn’t understand why these things we take for granted were ripped away from her.  She wanted to walk, to run, to play with her friends.  It wouldn’t happen for her.  I felt so guilty for not planning a play date before Cheyanne was diagnosed.  Makala had asked several times.  Why didn’t I do it?  I thought we had more time.  LIfe was busy…we’ll do it next week.  Little did I know Cheyanne didn’t have a next week.  After radiation Cheyanne received some Avastin treatments which seemed to shrink the tumor some but it came back with vengeance.
From the moment I learned that my daughter’s friend had been diagnosed with terminal cancer I thought she would be different.  She would be the miracle child.  This couldn’t happen to this little girl or my daughter.  It just wasn’t possible.  But it was possible and it would happen, and it would happen fast.  On June 21, 2016 I would take my daughter to visit her friend for the very last time.  She had declined rapidly only 6 months past her diagnosis.  I knew that day it was going to happen soon.  Makala sat by her side and held her hand for awhile.  The next morning, June 22, 2016 I woke up to messages that Cheyanne had passed away peacefully around 3:30 am in her dad’s arms and surrounded by family.  It was the last day of school for the kids here.  I felt guilty but I sent my daughter off to school without telling her that her best friend had passed away.  In fact, I didn’t tell her until late that evening when I just couldn’t keep it from her anymore.  Her reaction was worse than I had expected.  I thought maybe she wouldn’t totally understand.  But she did.  And she sobbed and sobbed the rest of the night.  My heart broke into a million pieces for her.  Cheyanne should have been at school that day celebrating the last day with her friends.
DIPG stole a daughter, a sister, and a best friend from this world.  Cheyanne deserved so much more.  She deserved to grow up.   Cheyanne was so loved by her entire family.  Her mom Jodi, dad Ray, sister Haley, and brother Devon.  They all remained by her side throughout her battle.   My heart breaks for her family every single day.  Today I sent my daughter off to her first day of second grade.  Cheyanne should be there too, they should be making each other pictures and playing at recess.  Instead Cheyanne’s desk is empty and here I am writing about her disease and death.  I’m sorry Cheyanne….I’m sorry I didn’t schedule those playdates in time and I’m sorry I didn’t do more to stop childhood cancer before I met you.  I didn’t know.
September, Childhood Cancer Awareness month has come upon us.  Don’t wait for cancer to affect your child or someone you know before making a difference.  Childhood cancer does not discriminate and it can happen to any child at any time.  We need to stop it in it’s tracks.  We need to find a cure.  Cheyanne will always hold a special place in our hearts and in our home.  I will continue to do what I can to fight for a cure in her honor.

 

Believe. Devon’s Story

I remember meeting Devon and seeing what DIPG does… Madeline left in 5 days.  I never saw the progression.  I walked into Devon’s house and I saw a mom caring for her son, friends visiting, family surrounding him.  I still see that today.

Today I share Gabby’s words- a sister’s perspective.  Her reason for Going Gold… Read it all.  Share.  Comment.  Engage.

Devon’s Story

By Gabriella LaPrade

My name is Gabriella. I have three amazing siblings; David who is 25, Alexa who is 22, and Devon who would be 21 in February. Growing up with these three were the best days of my life. My favorite and best memories are with at least one of my siblings by my side. David is the oldest and the goofiest, I am the mature/responsible one; the care taker, Alexa is the entertainer and the drama, and Devon was the little brother. You know how little brothers are, especially when they’re young! Devon always pushed our buttons….ALWAYS. But he was also a worrier, like my mom. Always tattling and calling the older siblings out. But ya’ know, those are the good old times. I’d give anything to have them back.

We would get into fights, laugh constantly (even when our mom said to stop laughing during dinner so “we wouldn’t choke” we continued to laugh), and we loved each other unconditionally. We definitely treated Devon differently sometimes, which he never deserved. To be honest, he was… much different than we were.

My siblings and I were always involved in sports or dance classes. We tried to get Devon into all that, he would try… but he wanted to do different things. He was into archery, fishing, camping, fixing things or building things (he was very handy), and he loved basically anything outdoors. We, unfortunately, did our older sibling duties and picked on him a lot for being different than us.

When Devon was 14 he started complaining of stomach aches and headaches. Being the older siblings that we were, we honestly just thought he was being dramatic. He couldn’t possibly have aches like that all the time…could he? He had multiple doctor appointments, that never really came to any conclusions. My mom insisted that it was a hernia. The doctors thought maybe he was constipated and to give him Miralax, otherwise nothing. We kind of brushed it off after that and thought Devon’s problem was solved.

My sister and I were All Star cheerleaders at the time. We had a competition in Rhode Island one weekend in May in 2011; it was Mother’s Day weekend, actually. That weekend was one of my younger cousin’s First Communion party. We left my brother with our family. My aunt called my mom and said that something looked wrong with Devon. It was like he was walking differently and she had a bad gut feeling. She said that we really needed to bring him to the ER. My mom told her, if she was going to the hospital on Mother’s Day then so was my aunt. When we got home from RI, my siblings and I went to my grandmas for the night while my mom, aunt, and cousin took Devon to the hospital. David, Alexa, and I fell asleep listening to Johnny Bravo. In the middle of the night we get woken up to our grandma yelling…

“Wake up, wake up. Your brother has a brain tumor.”

“What do you mean, what are you talking about?”

“Get up. We need to go to the hospital right now.”

That is the moment our world changed forever. Everything moved in slow motion for the rest of this night. There were so many questions I had, so many regrets, so many things I wanted to tell Devon. I am sorry for being a terrible older sibling, sorry for picking on you, sorry your life was about to change forever. On the way to the hospital there was so many more terrible thoughts going through my head.

None of which I will reveal.

Once we got to the hospital, it was like a scene from a movie. I walked into the hospital through two sets of double doors into a waiting room with many of our family members. I was embraced by every single one, and told multiple times that it would all be ok. The Dr. that diagnosed Devon came out to talk to my siblings and I. He drew a brain on the tissue box and pointed to where Devon’s tumor was. On the pons of the brain, an inoperable spot. I couldn’t move… I couldn’t breathe. My first question was WHY!? Why Devon? Why inoperable? Why on his brain? Why wasn’t it me?

My mom came out of Devon’s room and told us that we needed to go and see him but only 2 of us could go in at a time. David and Alexa went first, I needed a minute…or ten. Then my mom came back and said that Devon wanted to see me. That’s when I lost it. I started crying and couldn’t stop…I started walking towards his room, but saw a bathroom and darted for it. I slammed the door and fell to my knees on the cold bathroom floor. I couldn’t do it. I couldn’t see him sad or in pain. THAT’S MY LITTLE BROTHER! Please, God please, don’t do this to him.

I finally calmed down after about 20 minutes and walked into his room. He looked happy… why did he look so positive when he just got diagnosed with the worse news of his life?

My mom said that once they got to the hospital they were seen by multiple doctors and specialists. Once he was finally diagnosed, he looked at my mom and said “It’s ok Mommy, I’m going to fight this. I have Tyler with me.” Tyler was one of Devon’s friends/classmate that passed away from cancer a couple years prior.   Then he asked for a sandwich, to lighten the mood I’m sure.

He stayed this positive the whole time he was fighting. He kept this promise he made to my mom.

The doctor pulled my mom aside and told her that Devon didn’t have long to live. They were unable to operate and it is terminal. WHY? Why is his life being taken from him?

From that moment on, my mother did absolutely everything possible to save him, to give him the best life she could. My mother stopped working and took tons of time off to spend with Devon. She stayed up hours on end and barely got any sleep looking for any and all research on this devil thing called cancer.

D.I.P.G. Diffused Intrinsic Pontine Glioma.

A mass that sits on the pons of the brainstem. The pons controls all functions that we take for granted…breathing, eating, walking, talking, etc. Only 200 children between the ages of 4 and 11 get diagnosed with this each year…

I’m sorry, WHY IS MY BROTHER ONE OF THE 200??

This is a rare and inoperable brain tumor and the life expectancy is 5 percent meaning the other 95 percent usually will not make it. Little to no progress has been made on this kind of cancer or any kind of childhood cancer really, in the past 40 years.

Not knowing how long we had with Devon, all of our lives were paused, in the beginning anyway. We planned a trip to Disney World (Devon’s favorite place). We went on many trips actually.

Devon was put on steroids, which made him get bigger because he had such a big appetite and made him a little angrier. He would joke at some points and tell us to look how big his muscles were getting from being on the “roids”. He eventually got uncomfortable with how he looked, so uncomfortable that he didn’t want his friends to see him. A month or two went by and the next step for Devon was radiation. And it helped and shrunk his tumor 10 percent at first…and then it didn’t help at all.

Next step, was NYC, in March of 2012. That’s right, the Big Apple. My mom found a clinical trial that a doctor was doing at Sloan Kettering Memorial Hospital where an amazing team of doctors were working on treatments for kids with brain tumors. So, guess where we went every week on Wednesdays? NYC. Sometimes I was able to join, and other times I couldn’t (and got sick to my stomach every time I wasn’t with him).

While Devon was sick he got almost everything he wanted. He got a Make-a-Wish trip to Disney and got to go to Give Kids the World. He was able to have the biggest and best 15th birthday party. He spent so much time with his family, who he loved with every fiber of his being. He was able to eat whatever food he wanted…until he couldn’t.

Towards the end of the summer in 2012, Devon began to lose vital physical parts of life, this is where everything for us went downhill. He couldn’t eat, he couldn’t walk, he couldn’t talk, he could barely breathe. But this boy, he was so determined to live that he made my mom get him multiple things that would help him get better. We were trying to figure out how to communicate with him because his mind was still all there. He was literally trapped in his own body. We were able to figure out that he could communicate with his eyes…I bet you’re wondering how he could do that?

Besides the fact that Devon was a secret genius, we got an alphabet chart and started pointing to each letter. Once we got to the letter he wanted he would look up. We would write the letter down and continue until the word or sentence made sense. Eventually we knew what he was saying. We would tell him “I Love You” the way you do in sign language, and he would look up if he wanted to say it back, you knew he was mad at you if he didn’t look up. We would also joke with him and ask him if we were pretty, he would look up (say ‘yes’) for my mom and David but wouldn’t budge for me and my sister. We cracked up though, we knew he was still attempting to keep his personality, which included pushing our buttons of course it all took a while and we had to have some patience but imagine what Devon had to go through. He had to use his eyes to communicate with us…until he couldn’t.

Towards the end of November Devon had trouble breathing, a lot of trouble. He was rushed to the Albany Med. He stayed impatient in the PICU (Pediatric ICU). They told us he had to stay there, and he did, for a long time. My siblings and I were there as much as we could be. David and I were in college and Alexa was still in high school at the time. We still managed to figure out time to go there because little did we know that these would be our last moments with him.

Unfortunately, my siblings and I couldn’t be with Devon every day. I pushed so many friends away because I wanted to spend time with my brother. I didn’t mean to, and I hated that I did, but I didn’t know how much longer Devon would be here. Every time my mom would call me, I got a pit in my stomach thinking this is it, I’m not ready, he can’t leave me. When I wasn’t with him, I was worrying about him, thinking about him, wishing I had just a little more time with him.

Devon was an amazing, special, and kind-hearted boy. Even when he was sick he thought of others. In his last few weeks, even though he couldn’t talk, he used his alphabet chart and eyes to tell us that he wanted to go to St Jude’s. He wanted to get better and that he wanted to get his cousins presents for Christmas. Then he lost his hearing. Then there would be days where he wouldn’t even open those big, beautiful blue eyes.

One day he opened his eyes. I knew it was my opportunity to tell him I loved him; at that point I didn’t know when he’d open them again. He looked up (meaning he loves me too) and then closed his eyes, for the very last time.

Our beautiful Angel gained his wings on a Wednesday December 19th, 2012 at 12:07 am. We were surrounded by so many people who loved him. It didn’t ease the pain.

What were we supposed to do now? His breathing had stopped, his body was at rest, and his amazing, wonderful, courageous heart had stopped beating.

No… NO NO NO!

This can’t be happening, please someone wake me up. This isn’t real, right?… Unfortunately, it was.

Holidays aren’t the same, birthdays aren’t the same, every day…isn’t the same. Part of me is missing and he is never coming back.

I go gold because of this courageous soul. I go gold because the children can’t fight by themselves, they need support!

I miss him every day. I miss his smile, his quick wit, his humor, his beautiful blue eyes. I miss having one more person to call when I have great news, I miss having three siblings to do things with and to travel with. I’ll miss him forever.

Devon taught me what it means to be strong, physically and mentally. He taught me that I can literally do anything I set my mind to. He taught me to believe. Believe in the power of believing. He taught me how to love and how to care. He is my inspiration for EVERYTHING I do. He was such a powerful soul and I can’t believe that he is really gone. This December will be 5 years that we lost him and I still remember that torturous day like it was yesterday.

I have to remember is that Devon was unlike anyone I have ever met. He was a force to be reckoned with; he was genuine and caring. He knew when to give you a run for your money.

He was the light of our lives. A son, a brother, a nephew, a cousin, a friend, a hero, and a fighter. We all love and miss you, Devon. Thank you for inspiring community and for inspiring your family.

September is Childhood Cancer Awareness month. Please make yourself aware of what childhood cancer is and what you can do to help children and families in this situation. Unfortunately, you never know if it could happen to you or your family. I know first-hand that we couldn’t have gotten through this journey without the support of family, friends, and many community fundraisers and donations. Donate or at least volunteer. I promise you won’t regret it.

Rest in peace my handsome angel,

We love you Devon Arthur.

Greyson’s Story

The thing is Childhood Cancer is EVERYWHERE… it is my hometown, it is here in Albany it is in Rochester…. everywhere.  Greyson is from ‘back home’ (near Watertown, NY)… he is one of three young brothers, a twin.  His mom Christine shares their journey…

Greyson’s Journey

Written by his Mom- Christine

January 10, 2014 started like every other day. Get up, get the boys to daycare, go to work, pick boys up from daycare, go home have dinner then family time and then bedtime for the boys. That was the day we had planned in our heads because that was our routine. It was a smooth running machine with 21 month old twins, Jameson and Greyson and an active 4 year old, McKennon we needed that routine and relied on it.

At 10:45 that morning I texted daycare like I had every day since the twins had been 5 months old. I asked how their day was going. The usual response with a silly story about something that the boys had done or said did not come that day. Instead I got a text that said “Greyson fell just after you left this morning. He hit his head and has a bruise. We put ice on it and he seems fine.” I had and continue to have a wonderful daycare so I had no reason to doubt but what Greyson was in good hands. Yet something did not set well with me. I was at lunch and I told my colleagues that Greyson had fallen and had gotten a bruise on his head. I had been talking about how Greyson seemed to have very bruised up legs lately from what I thought was being and active almost 2 year old. I had called the doctor the day before and they said that it was probably as I suspected that he was just an active little boy. My colleagues said I should just call the doctor and tell them that he bruised again and take him in to get checked to see if he was anemic.

The pediatrician wanted to see him immediately. So I took off from work and took Greyson to the doctor. After his examination other the bruises on his legs and the now HUGE bruise on the side of his head he was perfectly healthy. The doctor ordered blood work to just see if maybe Greyson was a bit anemic. We made our trek to the hospital and got blood taken and went about the day. As of 4:30 I had not heard anything from the doctor so…no news is good news.

Around 5 o’clock my phone rang. I remember where I was standing and seeing the number my heart sank. I remember being stricken numb as the doctor spoke to me. Then the doctor said that usually in these situations it means the child has leukemia but further testing needed to be done. . We had to immediately get to Syracuse for Greyson to have a blood and platelet transfusion. I immediately had to take action and I had no idea what I was doing or where we were headed. The next phone call I had to make was to tell my husband Tom, that our son possibly has cancer. My heart broke having to tell him. Then the next phone calls were to family and friends to arrange for help with the other two boys and try to answer questions we had never dreamed of ever being asked, with the few details we had. The whole time our baby was unaware to what was happening.

The days following Greyson’s diagnosis was confirmed and he did indeed have Acute Lymphoblastic Leukemia. We quickly became accustomed to the medical language that accompanied it and very fluent in the “speech” we gave people to explain what was going on. After 7 days in the hospital and many tests, first rounds of chemo and surgery to put a port in his chest for him to receive his chemo for the next three years Greyson was finally able to come home.

That routine that we had mastered was gone. We had a new life that was hard on everyone that was with us. We had barely been home a week when Greyson got sick again. We headed back to Syracuse which resulted in 2 weeks in the hospital for an infected port. They had to remove his port and put in a PICC line to get antibiotics into his body which was full of infection from the port. After two weeks and some of the worst winter weather so no one could come visit and Tom and I could not switch out who was staying at the hospital, we were once again headed home.

For 28 days Greyson had to take steroids that made him ravenous and very moody. He also had to go to clinic once a week and get an IV infusion of chemotherapy. At his Day 29 appointment all of his diagnosis tests were repeated and we found out that he was in remission. We also learned that remission does not mean cured. We still had 3 years of chemotherapy ahead of us.

His next phase of treatment was lumbar punctures (spinal taps) every week for 6 weeks. When they did these they took fluid from Greyson’s spine and also injected chemo into his spinal fluid to keep the cancer from spreading to his nervous system. He would be put under general anesthesia each week for these procedures. Since he was out anyway they removed his PICC line and placed another port for his chemo. We were settling into a routine of sorts…Tuesdays were chemo days… lots of snacks needed for a very hungry boy after not being able to eat until his procedure was done. Then the seizures started. We did not know why he was having seizures and we still don’t, but the tests point to the chemotherapy that he was getting in his spine was irritating his grey matter of his brain and that is what caused the seizures. After 4 pretty scary episodes he was put on an anti-seizure medicine to add to his other daily medicines.

Our next phase was a piece of cake. Weekly chemo not as intense. Greyson felt pretty good. There was the occasional shot that I had to give at home but seeing Greyson feeling well was the highlight of this phase.

Then came the Delayed Intensification Phase. That was the entrance to HELL. This phase lasted 8 weeks. Greyson lost his hair in a matter of 1 day. He went from being an active happy little boy that had not let cancer bother him to a weak, tired, emotional, and sick little boy. He would just lay around and moan and hum which was a sign to us that he was in pain. The chemotherapy ravaged his body and he got the worst diaper rashes from it. He had to be put on IV medicine in the hospital for the rashes. He was so miserable and there was nothing we could do to help him. This phases completely destroyed all of the cancer cells in his body. It also destroyed all of his good cells as well. He had no immune system so he had to stay home or in the hospital. This phase tore him apart. We waited and waited after this phase for his counts to recover so we could continue his treatment. We waited for a month and were ready to do tests to see if his body was going to take over again or if we had completely broken down his bone marrow so that it could not produce healthy cells. Finally his counts recovered and he was able to start his final stage of chemo.

September 2014 he entered Maintenance. He had monthly chemo infusions, monthly steroids, weekly oral chemo and nighty chemo. This phase lasted for 2 years and 7 months. It will end on March 18, 2017.

If you see Greyson you would not know that he has cancer. He has overcome so many obstacles. He has persevered on a daily basis. With the amount of medicine he has had to take he cannot possible feel well all the time. He always has a smile on his face and a witty thing to say. He is an inspiration to everyone that meets him. We have met so many amazing children and families on this journey. We have laughed at successes and cried at losses. We firmly believe that when something like this happens to our children it is a lesson in humanity and compassion. Through this little boy and other children like him we have learned strength, courage, generosity, humility, faith, honesty and compassion. We have seen communities come together to give their all to help lift the burden for him and our family. Complete strangers have reached out to us and come forth to offer words of encouragement or just a hello when it is needed. The doctors and nurses have become a part of our family and we would never have gotten where we are without them. So yes even though Greyson is just a little boy only 4, he is our family’s hero and no matter what mountain he has to face in his life he can always say “I climbed this one and I got to the top!” Cancer picked the wrong kid!

greyson