Our ‘goodbye’ to a giant, is his ‘hello’ to his girls

Saturday morning, I woke up with all the plans of the day going on in my head. Maddie’s Mark had a BIG Best Day Ever and I had to organize the worker bees and figure logistics for cake pick up and beyond. It was one of those crazy days…

I woke up to news that George Bush had died, at 94 he went home to Jesus. His granddaughter shared a powerful, emotional and raw post about her Gampy, along with an image my mind will never forget. I have read and reread her words, and will most likely read 100 times more before I put them away for a time. The connection to George is that for me… beyond him being a pretty great human being, beyond him deserving my respect as 41st President… we both belong to the same ‘club’. We both lost our little girls to cancer.

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I remember learning that there was a Robin Bush, and reading her story. I felt a connection to the Giant that Jenna wrote about. It soothed my heart to know that He and Barbara still remembered her, still talk about her, still honor her. I always worry that someday we will forget, someday we won’t talk about her… fear that she will disappear. I love knowing that they brought Robin along, telling stories and using her words- “I love you more than tongue can tell”. I imagine that reunion moment was a gift God could not wait to witness.

I have an image in my head of what this will look like… what that entry to heaven will look like for me. I imagine Madeline as my 5-year-old waiting for me, impatiently. I don’t imagine clouds, but instead a sunset just the way we loved at the lake. I see her running to me, as I go to her. She will know me, she will be waiting for me… she will be right there with the longest super hug. I can’t see or hope further than that… every moment after doesn’t matter.

Somedays I want to just fast forward to that time, to that moment with her. I know it will be spectacular, my own little miracle in this mess. I think about fast forwarding, but then I am reminded of the rest of my life and purpose and people. Imagine if George and Barbara didn’t use their years here, in this mess, to make it neater, safer and different? I don’t have Political goals, I don’t plan to be President of anything except Maddie’s Mark, there lies my purpose, my job. I get to spend my time here parenting, and looking forward to meeting my grandkids, I really think they are the gift after raising kids through all these tough years. My job is to share Madeline’s words- Best Day Ever, and know that every time I say those words, I am brought back to the moment she altered the future with those words. I can see her hands next to her face with the most perfect smile, after she poked my arm, she said “Best Day Ever” in the most excited and raspy little girls voice. In that moment she brought my crazy brain back to simple and present… almost prepared for the time to come.

I imagine Robin’s short life sat in the back of The President’s brain and her story was a part of the decisions he made. I know Madeline’s short life is a part of my life decisions… she is helping me build the best kind of life.

Madeline’s life sent my life in a direction that I didn’t plan on, just as Madeline’s death has redirected my whole future. I now work with Childhood Cancer Advocacy, Childhood Palliative Care, Organ Donation, Non-Profits… I work in a Special Ed classroom that supports building social and emotional skills. I teach Faith Formation, I write, I speak… alongside raising Madeline’s sisters. All of these things are different than I planned, but they are a part of the different purpose that God is directing. I am sure George and Barbara’s whole life was forever altered by the experience of having a sick daughter and then her passing.

I keep rereading these words from The President’s letters, I love that he wrote so much. I think it is a special gift to the future to leave your words, especially handwritten. The feeling is so familiar to me…

“We need some starched crisp frocks to go with all our torn-kneed blue jeans and helmets. We need some soft blond hair to offset those crew cuts. We need a doll house to stand firm against our forts and rackets and thousand baseball cards… We need a little one who can kiss without leaving egg or jam or gum. We need a girl,” he wrote.

 

“We had one once. She’d fight and cry and play and make her way just like the rest but there was about her a certain softness. She was patient. Her hugs were just a little less wiggly,” he wrote

-George H W Bush

 

Thank you, President George HW Bush. I will always see that image of you and yours meeting in heaven. Your words and actions, honoring and telling others about your lovely- knowing that you still thought of her daily… she never disappeared, are a great comfort to me. Enjoy that soft blond hair… enjoy hearing “I love you more than tongue can tell”…

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Does your day matter?

At the end of the day did it really matter? Did the things you did in your day matter or make a difference? Did you make a big deal out of a little deal, did you let spilled coffee or a fight with your daughter ruin your day? Did you stub your toe, back your car into the garbage cans or maybe forget something important? Did you get angry at the slow car in front of you or yell at the cashier for making a mistake? Did you stress all day about what wasn’t going right? Did you rush through the important stuff, trying to get your family to the next thing on the schedule? Did you fill your night with dance, soccer, tryouts, clubs, homework, reading and of course an hour of driving to all of the above? Did you go, go, go until bedtime and forget to enjoy your family, forget to eat dinner together?

STOP.

JUST STOP.

Hear me out. We get one shot, one chance to do this. We get one chance to do all the things we get to do in the time we have. Some of us will be here a long time, some of us will be kicking around on this Earth for over 100 years. Many people live to be 60 and 70 and 80 and beyond… they can reflect back on the speed of those years- missed adventures, funny memories and big bold moments. It goes fast. Sometimes it goes even faster…

Madeline only had around 8,700 hours to spend here, though we didn’t know. She lived them well, I can look back and see we did it pretty well. She should still be here, but we don’t get to pick the piles of life that we are dealt. Madeline had cancer- not just cancer but a fatal, inoperable brainstem tumor that always steals the last breath and heartbeat of those with it. She had a short life… a painfully short life.

We don’t get to pick… the hard stuff or the easy stuff. We don’t get to pick. I work with families that are going through the hardest things, not just cancer diagnosis, not just treatments… but add on Palliative Care. I work with families, often, who are preparing to say goodbye to their child. They need to hear that they need to trust their gut, that others opinions don’t matter and to try not to focus on those people who are living life and posting or saying things like FML. I am constantly using these life experiences and lessons to frame my life outside of support of others.

For every bit of missing, Madeline has taught me how to live better. I do my day with intention to do ‘what matters’. Sometimes ‘what matters’ is brushing something off your shoulder or reminding yourself it is a little deal. ‘What matters’ might be unpopular- but I try hard to choose it anyway. Oftentimes ‘what matters’ is inconvenient- we have dance, baseball, tryouts, meetings and beyond so we put off ‘what matters’… we try not to do that in our house. We work in the ‘what matters’… and we do ‘what matters’ together.

Cancer altered my perspective on life and living, on ‘what matters’ and time. I wish that lesson came from something else, imagine if I could still snuggle Madeline and watch her grow AND see life the way I now know it. I have never been a person who sees life for all the crap in it, and you better believe I.do.not.use.FML in my vocabulary… I see life for what it is. I see the amazing and hard, joy and pain, love and loss…

So… at the end of the day it is your responsibility to make sure you made the most of it, to know your time mattered. Remind yourself of what is a big deal and what is a little deal- also remember almost everything is a little deal. Remember that we are all doing life- with the hard and the joy, pain and the loss… right next to each other, that waitress or clerk or librarian or slow driver is going through life too. As far as overfilling your time- STOP. I know it looks like it matters, but it doesn’t. Don’t go to a random kid’s birthday party and skip seeing your family, don’t put all the work into 50 activities that keep you busy, don’t fill your life with a schedule. Schedule time for life… I promise you it isn’t worth it- I can only imagine what it would feel like if I had filled Madeline 8,700 hours with the filler crap and the activities that we push them into. JUST STOP… trust me.

We don’t get to pick the hard stuff or the amazing… but you need to be ready to enjoy the amazing and endure the hard. I didn’t pick Cancer and loss…

Make your hours matter.

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Cancer Stole- Her

Today the girls and I drove home from Lake Placid. We drove the same route we drove back to our home in Rotterdam 6 and ½ years ago, only this time it was just the three of us.

Madeline was diagnosed on a Thursday in the morning, we left Albany Med later that day to go home, only after stopping at Target to grab steroids. We went home to our family there, they did a pretty good job of pretending they were happy and okay. We were firm- we weren’t going to make Madeline uncomfortable, well any more uncomfortable than she was. My lovely, independent Madeline could no longer walk like she wanted to, she couldn’t tie her shoes and she couldn’t button her wrinkle free cardigan. She watched her sisters and cousins run and play… and she knew she couldn’t. In a matter of… pretty much 48 hours DIPG stole so much from her.

Our family left for the night and we settled in, and tried to enjoy time and keep Mads comfortable. Friday, we woke up with intention- we needed a cabin for our whole family, her Grammie suggested she make her First Holy Communion, we set up a photography session with the best, and many hands got to work on changing the nursery into Madeline’s own bedroom. All.in.one.day…

The photo session was hard, it was so bright and light. I didn’t feel that way, I felt like I might puke. I smiled and I watched my girls together… Madeline would have normally joined in to make her sisters laugh but she just did her best to smile. Amelia and Lucy didn’t understand. They laughed and ran around… I struggled. The best moments were captured and I am forever grateful…

That night was Madeline’s big ‘sleep over’, she hosted her sisters and cousins to watch ‘Rio’ and they ate junk food on her ‘new’ bed. She was tired but I know she loved being squashed on her bed with her favorite people God made for her. I guess I should restate her ‘sleep over’, we sent everyone back, after the movie, to their hotels so we could get sleep. I didn’t sleep for those days, I just lay there uncomfortable, feeling like I had a stomach bug. Grief and fear can look a lot like a stomach bug.

Madeline woke up the next day, Matt was on the floor next to her, I heard her say “Daddy, Meme and Lucy can’t mess up my bed!”. I smiled and wondered how long has she desired her own neat space…

On Saturday Madeline made her First Holy Communion and Confirmation. She looked beautiful. It was hard, trying to keep her hydrated as others ran and played. I can see her and feel her in her tiny white dress…

On that day her official name, in the Catholic Church, became Madeline Elizabeth Madeleine Sophie Musto, she chose that from a list I prepared for her to choose. I thought it was lovely and soooooo long… I told her that it is a long name for a kindergartener. I tried to make a funny moment and I am sure it was lost…

That day was exactly as it should be… even in the pain.

Somehow the world pulled together a party with 2 beautiful cakes and family from all over the place. We enjoyed it the best we could. We headed up to Lake Placid. I remember Amelia and Lucy rode with their grandparents and we were all laughing and being goofy at the gas station. We had all stopped to head out together, my cousins, parents, in-laws, and beyond. Grabbing snacks, going to the bathroom and filling up on gas. Madeline was in the middle of my backseat, one aunt on either side. They got her laughing, like the gut laugh, and I now know that was the last gut laugh. The very last one…

We arrived in Lake Placid to an amazing Log Cabin, with bedrooms and toilets galore. The kitchen was so inviting and the living room became one of our last perfect moments. Sunday was Super Bowl Sunday… and yet I didn’t even know what kind of football was going on. We just focused on Madeline and building moments…

We adventured around the Adirondacks… to the Saranac Ice Castle, pottery painting and Ben & Jerry’s. When we all made it back to the cabin in the woods, we settled in and welcomed our cousin to read and perform for us. He read Madeline’s favorite books and had the best sound effects. I will always remember how she shimmied up closer, off my lap, to him as he read. My last memory of Madeline smiling was sitting next to my nephew Nicholas as they listened to Lucy repeat the “Clomp, Clomp, Clomp” in the story, just like she did at home. I miss that smile… I will forever miss that smile.

Matthew carried Madeline to bed, I watched him. I remember her head on his shoulder as he walked to the bedroom. The next day Madeline woke up with extreme vertigo, she got sick eating pancakes. I remember bathing with her, thinking in my brain that this must be my job now, to bathe with my lovely. I didn’t know that it was her last bath…

We travelled back to Rotterdam soon after that bath. Matthew had called her Doctor and let her know. We purchased Dramamine and hoped that would keep her comfortable for the drive back. I remember all those twisty roads… praying she would be comfortable. She made it… today I drove that same road, that whole route…

We got home and I positioned myself in the recliner with Madeline on my lap. If I moved, even to itch my neck or adjust my hips she would wake and get sick with vertigo. I stayed in that seat with her for… so many hours. I remember the women from Make a Wish coming to talk about doing a wish to Disney. They told us they only needed hours to get us there to enjoy our time. I just kept thinking Madeline is so not a Disney kid, but if it works then it is meant to be. I sat still as a statue during that visit from Make a Wish. I remember hearing my friends stop and someone telling them it wasn’t a good time, I may have yelled to them, I can’t remember. I just sat still as I could be… until Dr. Porter stopped for a house call. I feel like it was 9pm when she got to our house, 25 minutes from the hospital. She was so calm. She made me make Madeline uncomfortable so she could assess her. It was painful. I watched Madeline in pain and stress from the vertigo. Dr. Porter told us she would see Madeline tomorrow to start a line and administer drugs for vertigo. She calmly and clearly told me that this could be Madeline’s life for a long time. She told me to sleep. I had not slept since Thursday night. She told me that the drugs they would give Madeline may or may not help her…

I took Tylenol PM to fall asleep focused on the idea that the medication they had might not help. Madeline had transferred to Matthew’s lap and I tried to sleep upstairs. Downstairs Madeline had a few episodes that felt like she couldn’t breathe, I heard and rushed down… it corrected itself and I tried again to sleep. I would look at my kitchen and see my little sister Molly and Raquel working on Madeline’s 100 Day project. I know they were trying to stay busy and out of the way…

The last time I ran downstairs I think my sister was calling me… I remember running downstairs. I remember the sound I heard. I remember Dr. Porter telling us “When the tumor progresses her breathing will change, it will have a click, at that point she will no longer be Madeline”. I heard the click… it was time to go to the Hospital.

I put on a Potsdam Hoodie and ran out the door with Matthew, I knew. I knew, somewhere in me, that it was the last time she would cross that threshold. I knew that Sparky would never see her again… and I loaded in the car- maybe with my purse maybe without. Matthew drove fast… and we called Dr. Porter. We pulled up to the ER and someone must have parked the Jeep. I don’t remember. They were ready for us…

Madeline was admitted to the same exact room Lucy was in only 2 weeks prior for a tiny concussion. We got to the room and alarms went off… we were asked about DNR’s and I kept telling them we aren’t ready for DNR’s she was just diagnosed. Finally, we were allowed next to her, we had called a friend to pick up the girls and bring them to us. Madeline looked so tiny, so ready. I remember singing to her, in front of a male nurse or EMT or whatever… I told her “It is okay to go, we will be fine. If you can wait your sisters are coming…” and she waited. They moved us across the hall. The nurses had created a big bed for us, by connecting two beds and putting sheets down. Madeline was in the center, I was to her left and Matthew to her right. Amelia was next to me and Lucy sat next to Madeline’s feet. We talked to her… we told her it was okay. We sang her to heaven…

ABC’s, You are my Sunshine and Twinkle Twinkle Little Star… all of her favorites… and soon she was gone. I had laid my ear on her chest and could hear her breathing slow and her heart sound like it was flooded. I remember that moment… yet I don’t know what time it was.

The moments after are hard… all of them, even this one. I remember feeling like I could not leave there… I had never left her for long…

It was one of the most beautiful and painful moments in history, at least in my history. I sit here tonight and have again entered that time that makes it impossible to get much done, that makes me feel it all. I miss Madeline. I hate cancer. I hate DIPG. I hate what cancer stole from her, stole from us.

Cancer stole my daughter and all the years she could have changed the world. Cancer stole Madeline’s laugh and breathe and heartbeat. Cancer stole Amelia and Lucy’s sister and role model. Cancer stole her perfect dimple and awesome attitude… but it didn’t steal her soul. Madeline’s soul is still hanging out with us, guiding us and building better for others.

This is a hard spot to enter. I let myself today, because it is September. I let myself enter this space and share in hope that this will change… what if sharing this changed something? What if a new set of ears hears this and they can change it… what if that is you? What if… soon we can talk about how far we have come? That is all worth the pain…

Read. Share. Comment. #GoldStrong . Yell. Create Awareness. Change this…

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A Meme Memoir

A memoir is a personal story with many details based on knowing yourself.  Memoirs are intimate and written based on facts an experiences.  A few weeks ago Amelia mentioned she was working on a memoir, she talked about how she helped another boy in her class write his memoir.  She said ‘Mom he was only writing one detail, so I helped him add pieces to his big story’.  She kind of schooled me in memoirs.  I am public school educated but have yet to write a memoir- I remember writing my own obituary and inviting Harrison Ford.  I also remember my teacher letting me know that I could not invite people to my funeral, it wasn’t like that.  All the things we learn… all the things our kids learn before us…

Amelia worked hard this year, and it was visible.  She really matured and is started to fill BIG life and feelings she is blessed and cursed with.  My girls are a reminder daily of embracing the pile and the hard stuff… and living the best you can.  They are the first to help friends- whether it is picking up dropped items, helping others stay safe or rescuing and caring for people who need it.  They are the extraordinary product of a life laced with pain and grief.  I know the challenges that this pain and grief have laid upon those girls, but I see the amazing work God is doing in them along side that pain and grief.  I am grateful every.single.day.

I wanted to share this and Amelia was onboard.  I want to share how God and life build people for a purpose.  I have always known that the most amazing caregivers have a purpose in the care and love.  I know it is true… Amelia’s work reminded me of that.  I always tell my girls you can be anything, anything you work for and anything you desire.  All I ask is that you do it well with kindness… if you are a garbage collector, I am proud, but be a kind one- go out of your way to take care of people on your route.  If you are a teacher, be a good one, go out of your way to build better.  If you are a hairdresser, be a good one, go out of your way to remind people of their beauty.  If you are a police officer, be a good one, go out of your way to treat people well, get the jerks off the streets and build communities better.  I just want them to be ‘a good one’.

Amelia shared her memoir with me… I had a deep feeling that she is going to be ‘a good one’.  No one will leave her care and feel that they weren’t loved and cared for, in fact she plans to take it further and advocate for a cure and for time.  I love how God is using her…

So… finally here is Amelia Musto’s 5th Grade Memoir

I Want To Make A Change

                     amelia5

Amelia Musto                          6/4/18

Have you ever been asked, what do you want to be when you grow up?  I have and until this year I’ve wanted to be a hairstylist, a teacher, a singer, and an artist. But now I know that I want to be a nurse. And I would love to work at Albany Med.

If you are wondering why I want to become a nurse is because I experienced something that opened a door to wanting to help people more.

The  experience that had opened a door is when I was 4 years old my older sister who was 5 at the time passed away. Her name is Madeline. I want to help people enjoy a better life. Until my sister was diagnosed she had a normal life except for she was dizzy and some other complications. When she was diagnosed she had under 2 weeks. I want to change that for other patients.

 I remember we went to a huge cottage with our whole family after she was diagnosed. At the cottage  we decided to go in the hot tub when it was snowing, and my uncle Travis put ice cubes in our bathing suits! I realize now we went to the cottage to spend more time together with our family.

In the future I want to help doctors diagnose patients sooner so the doctors, nurses, and I can help before. And so they can live longer. My sister Madeline had a brain tumor known as D.I.P.G. a cancer they have not yet found out how to cure.

    I also remember the night Madeline passed away how kind the nurses were, they put on scooby doo and brought Lucy and I in a different room to watch scooby doo. My mom wanted fingerprints so, the nurses brought clay to get the fingerprints. The nurses even had them made into a necklace.

    That is why I want to be a nurse. I want the family’s I help to feel special. And help people feel and be better.

Read.  Enjoy.  Comment.  Share.  Think about what made you to be who you are…

Lent and Burdens…

Any lesson that starts with “Crap I forgot the cans… Lucy go find some can’s”… has to be a good lesson, right?

This week we talked about the Stations of the Cross, The Passion of Christ- to 3rd graders. I try really hard to make the lessons not only memorable- but tangible. I know when I learn things the best way to learn them is when I can almost feel the lesson- touch it. I try to bring that into teaching the littles about God and how I know Him. I joke about why I took on teaching Faith to Lucy’s age, that I would be taking a nap anyway, but honestly, I felt a challenge to make knowing God easy for those kids.

I take that job pretty serious.

This season is very important not only in the Catholic Calendar, Easter is a time to reflect on the most painfully beautiful time in the calendar. I guess I love when pain rides right next to beauty, I love how joy lives right next to broken.

The lesson…

I wanted those kids to get it, to feel a little of what Jesus had to feel. Lent is a compilation of sacrifice and celebration, every time you say ‘no’ to a piece of chocolate or wine, you think about Jesus and all of the hardship He carried. The lesson was the most important part of Easter- the Passion. The sacrifice was beyond all of those we give up in Lent. The pain is heavier, the burden bigger and the intensity higher on those hours. I get that… but how do you share this with 3rd graders?

“Crap where are the cans…” I realized I forgot my 14 or 16 cans, I left them at home. I did bring the packets for each child on the Stations. I did make it on time… but I forgot the cans. I sent Lucy on a hunt for some books and she succeeded. We set 2 books on each desk, then we started. I told each kiddo to pick up the books and hold them. I demonstrated. I told them to hold the books while I read and spoke. I started with Passover, ‘The Last Supper’… then brought them through the journey of Jesus.

Judas- betrayed Jesus. Do you know what that means? He handed Jesus over to the ‘police’ and he knew he did wrong. He did that for money and glory, but it ruined his life. Jesus was arrested and taken in front of a crowd who was determined to hate him. He was judged by unfair judges, because they were scared of him and jealous of him. He was condemned to die. “Do you know what condemned means?”… Told to.

They were following along, and complaining. I had to remind those kids to hold those books up (I promise they weren’t heavy)… and listen. We were almost done. Fast forward to the Station that Jesus takes up His cross. I said ‘set down those books’, now imagine your book was a cross. Jesus’ cross was large enough to hold him, and he carried it for a long way. You guys held those books for 6 and ½ minutes, with complaining words and rests. Jesus carried his cross for hours. He begged God to let this not be His job, but He accepted this. Why would Jesus be scared of this journey?

I reminded them that he was beat, he was spit on… he was belittled, and put down. I told them I would NEVER want that for them, but this was Jesus’ journey. He had to carry his cross, his burden to open the gates of heaven. Jesus carried his cross, through heavy streets while people mocked him and tortured him. I wanted them to feel a little of that sacrifice. Their faces were so interested and they followed along. They listened to the end, well beyond the end of Jesus. We talked about how He was nailed to the cross, how that must have hurt. I really loved the point when we talked about the cross next to Jesus, of the criminal. Jesus said there would be a place in heaven for that criminal, just like that He loved him anyway. They died together that day, and they rose right there too. Jesus died, and his mom was right there. I asked them what they thought Mary felt, and it sparked some conversation. They really put themselves in her shoes.

The best questions was ‘Miss Erin what is a burden?’… ‘A burden is something else tacked onto you moment, it could be losing your job, losing a parent, divorce, failing… many things. Has anyone in here felt a burden on their lives, maybe a cross you have to carry?’ Lucy popped her hand up- ‘I have a burden. I lost my sister, and I miss her all the time’.

That is a burden. Softened by the fact that Jesus took his cross up to that hill and carried that for Madeline, for me, for Lucy and for you.

We covered the whole Stations of the Cross, it was a good lesson. I felt like they got it, they listened as their arms got tired. I can imagine Jesus’ arms were so tired, I hope so much that these kids would have been the ones that offered water or love when Jesus walked by with his cross.

I think of the burdens we all have and how we handle our crosses. This morning I read Lola’s Caring bridge… Lola is prepping to head to Heaven. She recently moved from Northern New York to her hometown- Chicago. She is busy enjoying all the food and treats out there… but she is also changing. Lola’s mom wrote about the changes in her day to day to… her progression, her tumor.

Lola’s sense of humor is pretty amazing, her ability to feel her burden and give it up to God is amazing too. Faith can be a hard thing. Lola shows how faith is so amazing… how knowing God can make you present in the last weeks. Lola has burdens bigger than almost all people, her body is breaking down… her brain is not taking care of her body. DIPG is taking her away…

Her cross is big, Madeline’s was too. Lucy’s is now a heavy cross…

Lola offers her burdens and suffering to the souls in Purgatory. 13 years old… and offering her suffering to others waiting to enter heaven. That is pretty amazing. Lola knows where she will go when DIPG steals her last breaths…

If you ever wonder about faith and God, if you question if He is real… if you wonder if there is a heaven- know that Lola and Madeline and so many others are here to show us. They are gifts to show us He is not only real but there after the cross is carried.

I guess Lent is the best time to reflect on burdens, crosses and pain- then on the last day we celebrate. We find eggs, we spend time as a family, we eat and laugh and celebrate. It’s like life… we live, we feel love and pain, we mourn, we celebrate, we eat, we fast, we pray, we beg, we suffer, we die… we carry our cross.

So… what cross do you carry? What burdens are you carrying on your back? What does your Lent look like?…

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What a flu season we have…

Lately all I hear about, other than politics, is the dangerous flu season we have entered this year. Unfortunately, the flu vaccine that was made and administered to most is not the strain that is lingering on doorknobs and getting coughed all over the place. Many teachers and kids have been hit with the truck that is the flu these past few weeks. I have been cognizant of the girls and their illnesses, trying to be really aware and proactive so if we get the flu we are hydrated and as rested as we can be. There is enough talk of the flu and how many people have died- that when Lucy had a fever last week and it turned out to be Strep she was very scared it was the flu and concerned because she had heard many children had died. The numbers are alarming and the season started early.

It should make you mad that so many have been affected and that 37 children have died of the flu. It should make you mad that we live in a world where so many still die of a common illness- the flu. A whole season of it, a whole chunk of the year that a pretty common illness can steal so many lives…

Imagine an illness that is rare and has stolen 819 lives since the start of flu season- 819 children dead. This illness is so rare that most people have no idea their kids are at equal risk to develop the disease. The roulette wheel could land anywhere. Washing your hands, covering your cough and Lysoling the heck out your classrooms and homes will do NOTHING to stop it. 819 kids who said goodbye to their families and headed off to heaven- a place where there is no pain.

You could be going through life at your normal pace, take your child in for a bruise or a broken bone- BAM… the words “Your child has cancer” enter your life. Your life will be forever changed. Most describe the day of diagnosis as the day their lives stopped. That day starts a whole new life- BC (before cancer) and AC (after cancer)… what that AC journey looks like is never good. It will change your forever- even when are not ready for it. Honestly, who is ever ready for it.

Childhood Cancer will require one or more parent to take months off from work, praying that they can maintain insurance and cover bills needed to save their child AND keep their homes. From the moment of diagnosis, the world changes… hospitals become the norm, ports placed, surgeries, ingesting poison, radiating cancer- with the hope that the radiation does not cause more cancer later. Watching your child being taken to the edge of death and hoping that they can get their bodies back to healthy. Since October there have been approximately 5,260 NEW childhood cancer cases. That is spread across several very different types of cancer (all understudied and underfunded). All of those families were in the middle of living their normal lives… and then their new lives started.

This makes me MAD. Does it make you mad? It should. The flu is dangerous, it is spreadable and predictable. We know where it comes from and how it spreads and it has stolen the lives of 37 children. Those 37 children still should have had 1,850 more years combined to change the world… to make this place better and kinder and cleaner.

We do not know how most Childhood Cancer is ‘spread’, how it chooses one child and not the next. It is a true roulette wheel in our world. We don’t know where most of the cancer comes from- what made those cells grow in that way and how to fix it. In adults many cancers are linked to life and the world- not so true in Childhood Cancer. Those 819 children should have had 40,950ish years combined to change this world- to make it softer, kinder, cleaner and more. Cancer took so many futures…

I don’t want the flu. I don’t want my child to get the flu. I wash my hands, I wipe my door knobs, I cover my cough. My girls do the same. How can we avoid Cancer? What can we do to prevent the words “Your child has cancer”? Hope. Pray.

Raise awareness. Increase funding. Share our stories. Make the world know that this is not RARE… Childhood Cancer is not Rare. We need to do better… we really do. We need to get more mad- we need to get more active. We need the world to see Childhood Cancer plastered on their news and their feed… we need change. I know what the words sound like, they echo in my head daily- “Your child has terminal cancer”. I don’t want you to hear those words…

Let’s be better and stronger and louder. While you are at it wash your hands, cover your cough and wipe the door knobs.

flu cancer

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.

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.