A Super Hero was Stolen Today…

We lost him. He was supposed to be first.

I stood in the classroom I work in, in the midst of some crazy moments, I peaked on my phone to use a timer and I saw it. I immediately felt the 500 pound person on my shoulders, the one that makes it impossible to move. I told that person, that grief, to leave me alone right now. I can’t do this part here, so I put it away. I can do that now…

Today Devin Suau left us here on Earth, some might say he lost his battle with DIPG… but I know the truth. DIPG stole him. DIPG broke into his body and stole him- stole his smile, his running legs, his body and this morning DIPG stole his last breath and last heartbeat. DIPG stole Devin, just as it stole my Madeline. He lost nothing, it was stolen.

I know exactly what today feels like to Christine, Devin’s mom. I remember the lack of understanding… how CAN the world still be working. How did people get up today and do normal… I wanted to shout it everywhere. I left the hospital with an empty car seat, feeling like I failed at parenting her. I should never only have 2 car seats, I was worried that the nurses might lose her pearl earring. We drove away from Albany Med, and I don’t think we spoke. Amelia had a major meltdown because Madeline was not in her car seat. We got home and Matthew and I just laid in the living room on the floor. Other people took care of the girls, or at least I assume they did. There were tasks to complete, that kept me busy. The world made no sense… I literally could not understand how we all didn’t cease to exist in those moments that she passed. I had to shop, I remember for the first time ever I had money in my pocket to buy whatever I wanted, and I wanted nothing to do with buying clothes. I still see that dress, it was tiny. I lost so much weight in those days… I hardly recognize myself in the pictures. I remember very quickly my brain became numb, like very numb. I felt nothing. I stood at calling hours, right next to my Madeline who was dressed in her favorite outfit with her prized twinkle toes… I hugged people and reassured them that we would be okay. I was floating above myself back then. I couldn’t possibly feel the feelings at that time, I might have imploded. I remember still the children from her Kindergarten class who came to say goodbye… they are now in 6th grade… and she is not.

I know what today feels like for Christine, and I hoped like crazy that he would be first- that DIPG would be halted and stop taking him away.

For all who wonder what to do… pray. Pray for Devin’s family. Take care of them. NEVER, ever forget Devin, remind them that you carry him, you love him, you miss him. Let his family do it their way, just the way they need to. Support them when they honor him, always. Be kind to Devin’s clan… they need love and support and privacy and peace… they need time. Talk about him… bring him along. Take this story and journey and ACT… raise funds and awareness for DIPG research.

I remember a wise mother who lost her daughter just after Madeline, her daughter Ila Jean had been sick for a long time. She told me in all the time that Ila was sick she memorized her. Ila is in her brain, she can tap into Ila’s smell, heartbeat or the way her skin felt. She memorized her lovely. I texted that to Christine, I hope she memorized her baby. I didn’t know to do that with Madeline… and there wasn’t time. Memorize your kids…

I miss my lovely, I hate that DIPG stole her. I know what that missing feels like… and I know what the pain feels like. Send love and prayers… take your sadness and use it as fuel to change this for others. Today the world and future lost a super hero, a boy who should have grown to a man…

Fly High Devin… you are one loved angel. I hope my angel greeted you with your grandma and you see all the splendor of heaven. Save us a good spot up there, and a few calorie free cupcakes…

This one’s for you Devin, one for your momma… you are her star.  Guide her well.  She will do your work, she will live life and bring you along… DIPG might have stolen your heartbeat and breath, but we are gonna change this world for you… your momma will do the big and hard things for you… you are our star.

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To teach is to learn…

I quite like teaching… I didn’t mean to, it just happened. I meant to be a doctor or a nurse, I loved science and the labs and people. I felt like every time we did an experiment it was like an adventure. Every time I researched and wrote a paper there was tons of interesting things I wrote about that I didn’t know before. What are the odds that when I returned to work after raising my girls to school age- I would work in Special Education, coach Odyssey of the Mind or teach Faith Formation? I guess I quite like teaching…

This year when school started and Faith Formation paperwork was past due, I felt a little drawn to teach faith. I knew they were in need of Catechists and honestly felt a little guilty that during that 5-6pm time slot on Thursday nights I usually took a nap in the parking lot at the church. I had no good reason ‘not’ to teach and felt a little pull to teach. So I said yes…

I know I have high expectations, but I hope to share my experiences and connection to God and help those kids form a great relationship too. I am sure I have high expectations, but I will try. I remember at the 3rd grade level I hated church school, except that I could chat on the bus over and try on other classmate’s glasses. I don’t remember having a real relationship with God, or really getting it. I remember being sternly looked at when I ask how it was possible that Mary was a human that never sinned, yet never knew she was special and would carry Jesus. Sister Norah was NOT a fan of curious kids… and I still don’t necessarily understand that today. What if I can do it better, and some active and chatty 3rd graders can leave on Thursday nights a little more connected to The Big Guy?

I am only a few weeks in, but I am trying. I am trying to remind those kids of how easy it is to have a relationship with God, how loving He is and how He wants to have that bond with us. I want them to be interested and learn… last week we talked about prayer. How it is just a conversation with God, how easy it is and how they need to remember that as they grow. I told them that most adults are scared and put off prayer and connecting to God. They are scared they will do it wrong, or mess it up… but He doesn’t actually care. He craves conversation, connection… it is what we are made for.

This week we tackled Saints, since All Saints Day is coming. It was good conversation… I learned a lot researching for the class. Imagine getting to be the person who tells a bunch of 3rd graders what a Miracle is… or the cool stories that go along with Saints. I got a lot of interest when I told those kiddos that there is a Saint who SUPER loves animals, he is the patron saint of animal wellness- he is also the reason that there is sometimes bring your pet to church day for blessings. I got to talk about Joan of Arc and how a person can become a saint (if you don’t know you should definitely Google it). It was a really good class, we finished it off with a 10 minute game of Head Bands.

I heard some kids talk about when they die and become saints… it just got me thinking about how it all works. To a child we see a good person as a saint… but I know that a saint is WAY more than that. I got to explain that… a saint is a person who gives their life for Christ- not in a ‘I am baptized’ kind of way… but in a I will definitely stand up and proclaim that I know Jesus and love Him- even if you can be killed for it. A saint goes into Leper Towns and cleans the sick people’s sores, loves them and cares for them- at the cost of their health, in the name of Jesus. A saint is a human, they sin, but they do the hard work, in hard circumstances, with high costs such as their life.

One child asked me what saints look like… I started going through the book to find pictures. Then I realized that the truth is they look like us, people… only most were born and did their work in a different time so their clothes are different and they are usually represented as a statue or painting… cameras are newer to history. Here I was thinking all complicated- looking for pictures and paintings… but the truth was simple. They look like us. The cool part is that to become a saint… they have to be dead for 5 years, they need to basically be a hero of sorts and they need to have VERIFIED miracles. BOOM… pretty cool.

I talked about miracles tonight… I think I was the first to deeply talk to those kids about what they really are. Miracles are unbelievable things that really happen. Madeline is my miracle; her life was unbelievable… her sufferless death a miracle.

I am enjoying this season of my life, this teaching season. I know it is a piece of my life that I will forever learn from. I am missing my Thursday night naps… but I guess I have lessons to share…

faith

So far from ‘old’ me…

 

I am just not that person anymore.

I made apple crisp yesterday. My house smelled like apples and cinnamon and fall. The Musto Mountain of Laundry was put away. The pumpkins were all ready to be carved. We were excited to have a pizza/pumpkin night.

I had a thought as I stood cutting apples with the girls… I am not the person I was back when these things were the normal. I used to cook for people every.single.weekend. I used to theme out taco nights and invite friends to cut pumpkins with the girls. I would make a pot of sauce and host… I used to be that person.

I felt, not in a terrible bad way, so far from that person. I started to think of all the things that have changed since then, back when I hosted and cooked and committed to events. I thought about when the girls were little carving pumpkins. I thought about family dinners that weren’t just the 3 of us. Three is such a small number… I know I am just not the same person anymore.

So many things have changed since then, many really great things. All these things life has brought to me have made me a really different ‘me’ than then. I miss her… I miss old me. I don’t wish to be ‘her’… but I miss how she had a slight naïve piece in her, how she loved to commit and plan better. I miss how she cooked and kept up on all the holiday decorating and thoughtful gifts and important events. I looked back at ‘her’ while I cut apples with my girls. I just felt far away from her, but a little nostalgic too.

My world looks so different now, I am not surprised that I am different ‘me’ now than then. I was much younger and I seemed to find time to run with friends and move more. I had a schedule that included naps for my girls. I loved hosting friends for dinner and events… trick or treating and holidays. I see now that many of those ‘friends’ weren’t really friends… but this different me has some of the best people. Back then I had a husband, but never felt loved enough or accepted enough- different me has a boyfriend who loves her always and anyway. I now work full time, run a foundation, parents my girls, cheer them at baseball and more, teach faith formation… and I fail often at keeping my house in order or getting a good workout in.

This me has lived 100 lifetimes in only a few years… I like to think I am ageing well (minus the extra pounds). I have felt and been immersed in great pain… I have been lifted and carried… I have seen and felt great Joy right in the midst of it all. I know I have some extra wrinkles, some extra baggage… but I quite like this different me. What if I were still that me…

Maybe I will work in a little more apple crisp making, hosting more dinners and squishing into my little house. It felt good yesterday… soul filling. Maybe I saw ‘old’ Erin for a few minutes yesterday to remind me of where I am now, and maybe last night reminded me that I need that. I need to squish people in, carve pumpkins, feed them lots and watch movies… it really felt good.

Today I am sitting with my girls, watching Phineas and Ferb, and thinking about it all. I’m sitting in the same living room, with the same red curtains and the same TV… feeling pretty good about where I am right now. I might miss bits of old me, but I love this me. It’s hard to explain. I wish always that there were 3 girls snuggled up with me, but it is what it is. I am who I am- 35 years old, but at least 52 years old in life experiences.

Do you ever look back and think about not just how different life is now, but how different you are? How life’s big piles of amazing and crap built you to be different? … or is it just me…

Dear Hate.

I hate the hate in this world. I hate it. I can’t fix IT… but I can change it. In my own little niche I can. I know my niche is small, but what if we all cover our niches? What if we send hate on a journey a little farther from our world today- we can’t get rid of it, but we could change it. We could alter the world we live in… even if it is only in our niches.

I vow, I promise, I swear I will do my best. I will raise my people to be good, kind and filled with love. I can’t banish hate- but I can build a solid wall of love. I vow, I promise, I swear I will treat those kids I come into contact with in life, in my niche, with love. I will give them love in case no one else builds that bit of them. I will give them safety and love and handfuls of love. I vow, I promise, I swear to treat ALL of the adults and families I come into contact with dignity and respect and love. Love all the way, in every.single.niche.

Today my heart hurts and my soul feels heavy. I just don’t get it, how did we get to this point? How does one person take the lives of so many others? How does one hate enough to try to hurt so many? How can one person, any person, choose to hurt another- let alone 58 or more? I can’t wrap my brain around it, but my heart and soul feel heavy, I hurt. I can feel it. Grief, grief for people I have never met. I hurt for those who saw it all, who felt it all there. I hurt for those police officers and EMTS who had to jump in and stay calm in chaos. I hurt for the babies who lost their mommas and dads… their aunts and cousins… I hurt for the parents who lost their kids and friends or spouses who had to sit today and let it sink into their life that they lost their lovely. I have felt this heavy all of today.

I managed to get through the day and not break down, but it was a struggle. It was a hard day…

I keep scouring the news to hear the stories, the ones about the saviors, the helpers. I want to hear the stories of those who left our world last night. I want to carry them along with me… to fill my niche with love in honor of those souls. I can only imagine the bravery and fear so many felt. I pray for comfort… I know that won’t help much right now.

I can’t change the reactions, the behaviors of others. I can change me… and my reaction and behaviors. I am mad, so mad. I am not going to respond to the mad- only acknowledge it and help build my niche better. I am going to remember those who died last night and the broken of their families. I am going to carry them… bring them along. I am going to watch for the stories of those who showed their brave side, who fought the hate. They cared and loved in the midst of hate.

The thing is… love rides right next to hate. In those moments of EXTREME HATE… Love always rides right there. We just need to see it, we need to feel it. Let the love impact us more than the hate… otherwise hate wins that battle. Fuck Hate. Send that battle off… maybe we need to host an H-Day… and send hate to hell.

I wish I could help every.single.one of those people impacted in some way by this attack in Vegas… but truth is it is all of us. We are all sitting dumbstruck that there seems to be no reason, no foundation for this hate. It is like a new hate in our world. Hate for no particular reason… or so it seems.

I am going to vow to build love, life, light, content, faithful, kind, easy, funny, beautiful people with life skills and tools to ride next to hate, and knock it out. I am going to do the best I can in my niche, what about you? How will you honor those, and create a different world for their kids- for our kids? How will you do better? How can we not wake up broken AGAIN to hate?

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.

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.