Happy birthday Ezra. What are we supposed to do? How do we celebrate your birthday when you aren’t here?
I can look back in this blog and see Christmas 2009, just a couple months after we learned you had cancer. We had Christmas at home, and you started your fourth round of chemo 3 days later. I see when we sent out your second birthday invite… so full of hope. The day of your big party – so much smiling… so many happy people. We were sure you had no cancer left. I remember the day before you turned two – the day after we had your party – when we learned you’d relapsed. Hearing – again – there was no known cure for relapsed neuroblastoma. We were sure we’d find a way – you’d be the one to throw your middle fingers to the odds.
I remember the day you died. Holding you in my arms. Your mom holding you. Thinking this couldn’t be real. Watching the heart rate monitor numbers get smaller and smaller. I remember your mom telling me to turn it off. I couldn’t believe the numbers wouldn’t go back up. I couldn’t think past the alarm – why would I turn it off? How will we know when the numbers go back up? You couldn’t be leaving – what would we do tomorrow? We still have to fix you – where are you going?
I remember we stopped and bought coffee at 3 or 4 AM on the way home from that night. I had no idea why we wanted coffee. I had no idea why we should do anything. I couldn’t feel anything. Your mom sitting next to me. Her shirt wet from so many tears. Our bodies so tired from fighting with you so long. You must have felt so tired for so long? Were they asking me questions about my drink? Why does that matter? Why does any of this matter?
I remember your 3rd birthday. Watching that video of you over and over and over again. I remember your mom and I trying to figure out what we should do for your day. How to… celebrate? Remember? What do we even call it? And then today – a year later. Those same wonderings. We won’t stop fighting your war on neuroblastoma – we’ve met so many families who are feeling this same thing. It’s not right. I’m so sorry you had to feel all that. I’m so sorry none of us could find a way to fix you in time. We miss you so much. We love you so much.
I woke up this morning to Robyn yelling my name. Charley’s MIC-KEY button had fallen out in the night – inside it had sprung a leak and the small water balloon that holds it inside him had emptied. The button simply slid out while Charley was sleeping. Which means the hole we place it through had been closing for hours while he slept. The MIC-KEY button wouldn’t fit back in. The same thing happened to the last one – so we have no extra. The last time this happened, Charley had to go into surgery to have the hole expanded.
We spent all day today trying to get the MIC-KEY button back in and couldn’t. Luckily we had a smaller tube we could put in so Charley could get his food and medicine. It won’t last though, so we may have to go in for surgery over the weekend to have the correct size and button placed.
We worked on that til 3PM, when Charley finally went down for a nap. He’s tired.
Ezra would have been 4 today. We were supposed to have a 4 year old and twin 2 year olds right now. We were supposed to be watching them from the kitchen window while Ezra played with his little brothers in the yard. We were supposed to be asking Ezra what he learned in pre-school.
We weren’t supposed to measure everything in ml. We weren’t supposed to have more medical supplies than children’s books. We weren’t supposed to know 20 families by name who’d lost kids to cancer.
Life isn’t the same. It doesn’t “just get better.” You know when you have a headache, and you find yourself more agitated than normal because there’s this pain that’s constantly gnawing on you? You snap easier, you have trouble focusing? We lost 2 of our 3 kids – that pain doesn’t stop. It changes, sure. We see beauty in places still. We smile still. We laugh. Through it all is this dull pain, this knowledge something is off kilter, something is missing, something has happened. Sometimes it gets sharp, and it breaks us for an hour, a day, a week. Our life is still full of medical issues – a simple mishap for Charley (the MIC-KEY button coming out) means we’ll spend all day tomorrow in the ER, and Charley will be getting surgery yet again, at 2 years old.
We are fighting to let people know about neuroblastoma and to cure it. People say “don’t tell the sad, tell the hope. No one wants to hear the sad.” But there’s no need for hope if it doesn’t spring from sadness. Hope is toward better. It comes from a place of worse. We’ll only get louder – this war can be won, by all of us. We need attention on it. We need people raising up fists in the face of neuroblastoma. Not afraid to be loud, to be persistent. Did you know we’re personally hearing about new kids with neuroblastoma almost EVERY DAY? We’re meeting families constantly? They’re all being told the same thing – 30-40% chance of survival. Once a relapse happens, there is no known cure. WHY WOULDN’T YOU SHOUT THAT FROM THE ROOFTOPS TO GET MORE ATTENTION ON IT? WHY IS IT “NICE WHAT WE’RE DOING?” This is a war, and if you have the ability to push the fight forward, we want you to do it. Tell the stories. Give toward the cure. Become a doctor. Share a link. Write to congress. Help us fix it – because of Ezra. Because of Ronan… Layla… how many names do I need to write? I can tell you dozens from memory.
Happy birthday, Ezra. We love you so much.
Beautiful. I know of two children from my own small hometown, Braintree, MA, that have neuroblastoma. Beautiful Charlotte Kelly died last December at the age of 5 after her 3 year battle and Will Lacey is battling on for many years after being diagnosed as an infant. I tell everyone I know of neuroblastoma in the hopes of raising awareness. I think of your beautiful Ezra all the time. This war will be fought and won! It is because of people like you and Robyn. Much love to your beautiful family and special prayer for Charley. XOXO
Thanks Debbie! We are friends with the Lacey’s – they’re an awesome family. Pat is doing a ton of fighting, and plus he’s hilarious. You do meet some amazing people while fighting this war.
Happy 4th Birthday sweet Ezra, you are forever missed!! xo For you, For Layla, For Ronan and for so many more little angels we will FIGHT ON!!! Someday there WILL be a cure and less toxic treatments!! xo
hey, we miss you guys. come home so we can hug you. i was just telling katelyn last week what a truly special kid ezra was. so sensitive and sweet. beyond his years.
Thanks Jenny. Love you gals.
Happy 4th Birthday, sweet Ezra. I don’t post often, but I’m still here…following from afar…still praying…still fighting with you all.
I am in awe of your strength and humility. You are doing God’s work here on Earth. All of your boys are so proud to have had you for parents. Just know you continue to affect people out there that you will never even know about. I will be praying for Charley.
Happy 4th Birthday Ezra! The time is going by too fast! As hard as I’m sure it is Kyle, thank you for sharing your thoughts and heart through your posts. Don’t quit posting and reminding us all to keep fighting for a cure for neuroblastoma and cancer in general. You, Robyn and Charley are continually in my prayers and I pray God will continue to change lives Because of Ezra.God Bless!
Sincerely,
Paige
That’s great you’ve bonded with the Lacey’s. Pat is a high school friend of my brother Marty and he has always been hilarious. Happy Birthday to Ezra and I hope it brings some peace to know so many people loved him even though we didn’t know him in person. Keep on fighting the war and we’ll be there by your side until it is won. 🙂
Happy birthday to your sweet boy. Beautiful post, and I wanted to let you know that tonight at 180, P. Jerry had the kids write on a whiteboard what they could do to “be loud” (same words you used) and our oldest daughter (without even remembering today was Ezra’s birthday) was prompted by the holy spirit to write “help find a cure for NB…becauseofezra.org” I think it’s important to let you know that the Lord is still using his little life in so many ways, more than you could ever know. She just told me this as I was reading this post and was surprised to know today was his birthday. No coincidences.
Ann – this is so cool to hear. Thank you for sharing!
Kyle and Robyn, I am so sad that today would have been your sweet boys 4th birthday. I am so sorry for your loss. You are so right to be mad about the fact we still dont have an answer for neuroblastoma. Dr Levy and I were talking about Ezra the other day… remembering the hope, the fight and how much your family has been through. Keep the faith, stay strong and God Bless. Robert Sutphin
Thanks Dr Sutphin! We’ll email you guys this weekend – we’d love to get together again and share a cup of coffee.
Our hearts and prayers go out to you all. Love you guys.
Kyle and Robyn, I can’t imagine the pain and frustration you both feel to re-live this story and events daily in your memories. My family keeps your in our prayers. I am so happy that you have taken your energy to make everyone aware of this horrible disease (I have a friend who fought NB and lost). Please let us know if we can write to political figures, a drug company, a research facility – anywhere to further advance treatments and a cure for this aweful cancer.
God Bless you and thank you for continuing to post and remind us all of Ezra and his life and the progress of Charley.
Happy Birthday Ezra! Our son Noah has the same birthday as Ezra, we thought about him yesterday and prayed for peace for your hearts, that you would feel Jesus’ arms wrapped around you and the comfort and love only HE can bring. Stay strong Matthews family! Love and prayers your way!
Happy Birthday Ezra. Thank you Kyle & Robyn for sharing your pain so we can remember how to fight. Thank you Ezra for your short life helping to save other lives. I prayed for you today and want you to know that I weep with you.
Happy birthday Ezra, we will never forget you! Always thinking about the Matthews family- The Rodriguez’s
I will always think of Ezra’s battle. I will always be impressed with his parent’s persistence, faith and determination to fight for Ezra. I pray that His peace will guard your minds and hearts as you grieve for what’s been lost.
Thanks Sarah – I climbed a mountain with Philip the other day!
Thanks for sharing your heart. Words cannot express how inspiring your lives have been. Indeed Ezra has touched so many lives & this battle will be won because Greater is He that is in Us ……. Happy Birthday precious Ezra. Praying for Charley for God’s touch & perfection in his body. Your family is loved.
Dont listen to those who say “don’t tell the sad.” I say, why not? In the sadness is the heart…and the essence of what makes yours and Ezra’s story so profoundly, heartwrenchingly beautiful…and how justified this war on neuroblastoma is. You tell your however you need to.
Still can’t take off my yellow bracelet…maybe I never will.
The Dneaster family
Thanks Dawn – we totally agree. From the sadness springs the need.
I’m praying for your family & for Evie & kellen who are doing well in their battles with brain cancer & for the Hunter family that lost Ava and for others with bone, breast, etc. cancer. I am a survivor of esophageal cancer and know something about the battle. There are so many. Bless you in your quest. I’ll lift up Charley more often. Thanks for this heartfelt update.
I hope you have heard of http://www.bentownefoundation.org – Ben also passed away from neuroblastoma. His parents have raised millions of dollars to support some exciting treatments for pediatric cancer – Dr. Jensen in particular. There is HOPE.
Yes, Lynora – thanks! We have heard of them – actually a good friend of ours cuts Ben’s dad’s hair. I have an email out to them to maybe meet up – we’re in Seattle for September, which is where they’re based out of as well.
Happy birthday Ezra! I first heard of your family while attending GFC and I think about and pray for your whole family constantly! Your strength is so inspirational. I often think of sweet little Charley too. I also have a two year old who has a gtube and share many of your feelings and struggles living with a tubie. Our little guy had 7 surgeries in 8 months last year and many of those were tube related. That thing has caused so much trouble in the past couple years but on the same hand we are SO thankful for it since without it our little guy wouldn’t be here. BTW we switched from Mic-Key to AMT Mini One and LOVE IT!!! They also have a non balloon option which may be good if you are dealing with leaky balloons and tubes falling out a lot. It comes with a tool so you can insert and remove it at home without having to go into surgery or the drs office. Take care!
Kyle, I just read your recent post on the link Susan Bigbey and Angelica Lind shared on Facebook. I didn’t realize the extent of the suffering and grief you and your children have been through in your young lives. I can’t begin to imagine what the past few years have been like but I can tell that both of you are incredible people and parents. Each of your children have been blessed to have such amazing parents. May God continue to hold you in His hands. It was a pleasure to be part of the band when you led worship at MFA in August. Your talent and passion for worship were inspiring. Keep on fighting for the little ones.
There is rarely a day that goes by that I don’t think about Ezra. He has forever changed me, you all have forever changed me. In so many ways. My heart aches today just as much it did when Ezra passed. I know he is with you always! I am so proud of your hard work & fight against this monster! I love watching Charley grow & I am amazed at his strength!
I have to be honest, this is the first time I came across this blog. I have been reading for the last 2 hours and I am utterly heartbroken. Ezra seemed like such an amazing little man. The world is better, because of Ezra.
Kyle & Robyn, what incredible parents. My thoughts are with you guys and your growing family. Best, Mark.
I just want you to know … because of parents like you, the Thompsons, the Dinoffrias, the Bartoszs, and all the other parents of kids with NB, the word is getting out. People are being made more aware every day, and it’s because you are sharing it all – the hope, the fear, and yes, the sad. It’s working, and people are listening. I’m so sorry for the loss of your beautiful boys. You and Robyn are amazing, inspirational people. Thank you for sharing with all of us.