We appreciate your thoughts even if I don’t reply to your texts, emails or messages. Answers to questions are hard to form in my mind, but I might manage a yes, no or thanks.
Until we set up a social media portal to make news updates to you all, we’ll filter information through a designated person at home, who will then, in turn, forward it on to you.
Yes, you can fundraise for us even if I say no. I have no concept of the financial hardships ahead of us.
Think for me as my brain will be mush. Go ahead and empty our fridge at home. Turn off the hot water. Mow our lawns. Collect our mail. These things won’t cross my mind. I will be in shock.
Want to visit in three hours, three days, three weeks or three months’ time? Do it. Make plans. Come and see us. But as time will lose all meaning, I won’t be able to commit to availability until “the moment.”
I’ll be tired. Bone-achingly, mind-blowing tired. I’ll appreciate your presence even if I’m not up to talking much. Perhaps you might offer to sit with my child. Perhaps I might take you up on it, so I can I leave the hospital for some fresh air, a shower, sleep, a break.
Although an adult is expected to be with my child at all times on the ward, parents aren’t provided any meals. I’ll be hungry. Receiving your nutritious baking, ready-made meals and fresh fruit will be a blessing. Oh, and a good caramel latte would not go amiss.
That was a sad story about your hairdresser’s cousin’s neighbor’s sister who had a totally different cancer than my child. And died. But no, no, no. Absolutely inappropriate.
Please don’t think of me as rude or ungrateful if I don’t personally or publicly thank you for your well-thought-out gift, letter or card you sent to us. I can have faith in your altruism if you can have faith in the postal system.
A hug or your silent company will be of more value than a thousand meaningless words or forced conversation.
I will have limited access to sleep, time, peace, head space, food, technology, Wi-Fi. Thank you for your understanding and support and love.
Our firstborn son Ezra died in 2010. He’d been diagnosed with cancer on the 400th day of his life and lived exactly 800 days. Ezra battled cancer half his life. He smiled through most of it. He was funny, curious and compassionate. He flirted with strangers. He learned to walk and talk in hospitals.
We learned a lot from Ezra, like you can dance and laugh through cancer. We learned the pain from some losses never goes away; it just moves from your skin to your bones. We learned childhood cancer is not yet beaten. Incredible, strong, fragile families are also learning this every day.
Five years ago — a month after Ezra died — my wife Robyn and I started Because of Ezra, a 501(c)(3) nonprofit with a goal of finding and funding a cure for neuroblastoma and other childhood cancers. It has grown, giving more than $700,000 to support patient-affecting childhood cancer research, including the first ever national clinical study approved for all incurable childhood cancers, and trials of a drug called DFMO which we hope is stopping relapse (more than half of kids who beat neuroblastoma go on to relapse — and currently no known cure exists for relapsed neuroblastoma). The results are promising.
As I’ve spent these six years living in the childhood cancer world, meeting the families and children, the researchers and clinicians… I’ve fallen terribly in love. Childhood cancer is a crushing, inspiring world to live in. Daily, we are reminded of Ezra and our loss, and simultaneously built up as we meet more and more families facing and beating neuroblastoma. We are blanketed in loss, knit together by strength people should never have to know they own, and we stand at the front of a war, trumpeting a battle cry.
I’ve loved technology since I was young and have had a ton of fun (and some success) building companies in that space, but my heart was being pulled strongly toward continuing Ezra’s fight, and that of so many other kids we’ve met since he died. I spent 2015 wrestling with the thought of going full-time with Because of Ezra. I had the conversation with Robyn many times, as well as a few people I respect in the childhood cancer world.
One of those conversations was with a gentleman who lost his daughter to neuroblastoma and who has since with his wife (and team) raised more than $100 million toward beating childhood cancer. Over coffee, I asked him how it was moving full-time to a nonprofit. He told me it had been a big change, but they’d never looked back — that he and his wife knew they had to push this and ran full into it. The conversation resonated with me. I had another conversation with a friend doing similar work, and his words were even stronger: “If I wasn’t clear — please allow me to state it now: Do this full-time.”
And so, starting the first week of 2016, I am. Beating childhood cancer is my main goal now. And, surrounded by a powerful group of parents, kids, advocates, supporters, scientists, and clinical doctors, we will achieve this goal.
Because of Ezra has massive plans. We are working with the NMTRC and Dell on funding and advancing promising personalized medicine research. We are funding and pushing forward a drug called DFMO with very few side effects, which we hope is stopping relapse in kids with neuroblastoma. We pay attention to the entire neuroblastoma research landscape and maintain relationships with other passionate groups who are doing our type of work.
We are going to beat childhood cancer.
Robyn told me, when proofing this post, Ezra was all the parts of me she loved. To know his name has some small attachment to the work we’re doing, affecting so many kids who are fighting childhood cancer now… it’s a bittersweet feeling. And really, though we started this because of Ezra, we continue it because of so very many children.
I’d love your help. We’ve built an incredible network with Because of Ezra and the many people involved in furthering our mission. As I dive full-time into this, we’ll need even more help to make our goals a reality. Please, reach out to me at [email protected] to partner with us. We have big, audacious things we’d like to do — and the right support and partners will make them happen. Whether you’re a parent needing to connect to someone or know what treatments are available, or maybe wanting to partner with us through our Because of _____ program, or a corporate partner looking for a charity to align with, or a volunteer wanting to help… there are many opportunities, and we need your help. Let’s continue to be an ever-growing fist in the face of childhood cancer.
If you’d like to be a part of the work being done to cure childhood cancer, we welcome your involvement. If you are a parent seeking information on clinical trials we help to fund (or anyone with a comment), you can reach us at becauseofezra.org/contact. You can support Because of Ezra financially at becauseofezra.org/give. Because of Ezra, Inc is a 501(c)(3) tax-exempt organization with the Internal Revenue Service. Our EIN is 27–4013571. This article was originally published on my personal blog.
But in the weeks leading up to September, Childhood Cancer Awareness Month, CHOA has been asking five of its patients about their happy places for a different reason — the hospital, with the help of an illustrator, planned to bring these happy places to life.
For 13-year-old Hunter who was diagnosed with brain cancer, a happy place is somewhere you go when you’re scared, mad or nervous. In Hunter’s world, there’s a walrus wizard, flying pandas and dolphins you can use as taxis.
Justice, 16, was diagnosed with acute lymphoblastic leukemia on Thanksgiving Day 2013. Her happy place helps her late at night when anxiety and fear keep her awake. In her happy place, Justice has an extravagant picnic outside an Italian castle near the sea.
Eventually, she had to undergo a procedure to amputate her left leg just above the knee. Mya’s happy place is sunny Rio de Janeiro, Brazil, with the famous Christ the Redeemer statue behind her and the ocean breeze around her.
Alex Richards was 4 years old when he was diagnosed with T-cell leukemia and acute myeloid leukemia. Alex spent many years going through chemotherapy, a bone marrow transplant as well as numerous spinal taps and other procedures. Now, he’s cancer free.
Alex’s happy place? His home. The sports fan likes to picture himself watching football and hockey on his own TV with his own toys around him.
Lauren, 11, had a tumor in her brain, but after years of treatment, she’s now cancer free.
For those next weeks, a child who once was tormented by brushing her hair relished in it. It calmed her. I’d run my fingers through her loose curls. Hair loss is so symbolic of your child’s life changing, proof on the outside things are no longer the same. I started to feel so sad about what was to come.
We finally cut her hair in January 2013 because it was starting to itch as it fell out. We’d find hairs all over her clothes, in her food, on her pillow. It was time. It was the beginning of a new hope — hope that the medicine was working.
Soon, her eyelashes fell out for the first time. One by one. Or, if Reese had itched her eye vigorously, several at a time.
Her eyebrows were gone. Finally, she was almost skin bald.
When some months have less chemo, a white poof surrounds her head like a halo. She gets some eyelashes in, different than before, but beautiful. Her eyebrows are patchy. Then all too soon they fall out again.
Her head now shows the scars of surgery. Two brain surgeries.
Reese thinks she has pink hair. Right now, I think it’s a mohawk. She asks for ponytails and I eagerly oblige, pretending to pull her hair from all sides of her head into a top whale spout.
She calls herself “Miller” in the photos of her from before. Her identity is now Bald Reese. She has no idea she once had hair. She recognizes herself in baby photos by her bald, round head.
I’m certainolder children who have lost their hair to chemotherapy are self conscious. I wish that wasn’t the case. I wish hair didn’t mean healthy and bald didn’t mean sick. I wish bald was a sign of an amazing fighter who’s winning the war — even if just for that moment.
I hope when children ask questions to their parents, they respond with uplifting comments of hope and determination. I hope those bald kids radiate the confidence they deserve to show to the world.
My daughter Sawyer introduces Reese with, “…and this is Reese. She has no hair.”Reese smiles and sometimes takes her off her hat in pride. She has no idea how that head makes other people feel.
I’m beyond grateful companies make wigs for children. I’m thankful so many people choose to donate their hair for any sweet child who just wants to feel normal.
But, oh, how I hope for the day those wigs won’t be needed. That any child can feel normal, no matter what type of hair they have. No matter what type of “normal” they’re living.
Because lack of hair isn’t sad. It’s the first casualty of war.
When I hear bad news, news that rocks my world, I still have to change diapers and put babies to bed. I still have to make dinner and do laundry. Because those things matter, too. I have other children. I have a family that needs me.
When Reese had inpatient chemo and would puke on me in the night, I still have to change my clothes and get back into bed. And I don’t do that because I have to. I do it because I want to. That’s why I planned ahead and packed extra clothes.
There was a time I would read other people’s blogs. When I followed other families and thought, how? How do they do it? Then, it became us. Then, I understood.
Being strong doesn’t negate emotion. It doesn’t mean there isn’t a heart pounding, gut-wrenching fear that can hit at any point in time. It doesn’t mean my faith doesn’t waiver. It doesn’t mean sometimes life seems unbearable.
But life is about choosing your moments. I choose to focus on happy ones. I choose to make the best out of any situation and I choose to be strong. It means looking at today, instead of worrying about the future.
But at the end of the day, I’m not the one who puts on the “bubblegum” mask to go to sleep, possibly waking up in pain. I’m not the one who doesn’t understand why they have to go to the doctor so much when their siblings don’t. I’m not the one who feels sick or wants to sleep after chemo. But this does not define her. It does not define our family. It’s merely part of our journey. It’s a chapter that’s long and hard. If I could choose my adventure, at times I would have picked another page. But along the way, it taught us how strong we can choose to be.
Don’t forget where they learned that, though. You showed them the way. You showed them how to still get ready for dance class or go to school on good days. You taught them to have faith or see the silver lining. They got a lot of that from you. She will go to kindergarten next year and feel, without a doubt, the same as everyone else. Her brain tumor is an afterthought, a footnote. Her bald head, last year in preschool, was nothing more than a hairstyle. Her AFO boot is simply a different shoe.
We teach each other. I am strong because Reese is stronger. Her happiness reminds me every day is a good day. She is happy because she knows she is loved. I show her when I’m happy. I show her when I’m sad. I’m open with my emotions because she knows how utterly and absolutely loved she is when I do. I also don’t hide the worry or fear. She deserves that — for me to be honest. She is always honest with me.
The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Yesterday on Facebook I saw several posts referencing actor Ashton Kutcher’s request for changing tables added to men’s restrooms. While watching the Super Bowl this year, I viewed commercials urging dads to be better fathers. I think these are both signs of a strong movement to encourage dads to be better parents and teammates with their spouses. I couldn’t be more on board with these messages and have seen an increase in dads playing a more active role in their children’s upbringing. That includes me, who took a couple years to really grasp the importance of my role as a father and become an active parent in my kids’ lives. That especially became true when my 10-month-old daughter was diagnosed with cancer.
As a childhood cancer parent vet (we’ve been at this for 19 months, so I guess that makes us veterans), I’ve seen countless fathers rise to the challenge of being Cancer Dads — whether that’s cleaning up vomit or stools, holding a vomit bucket while your child endlessly empties their insides, squeezing into a tiny bed with your child overnight in the hospital or delivering countless meds through syringes and shots. I’ve witnessed ordinary dads becoming extraordinary. I’ve seen ordinary moms do the same.
However, judging by the articles and comments I see out there, you’d never know that many dads play an active role in their child’s cancer fight. From the numerous “Things Only Cancer Moms Know” articles (that have nothing mom-specific listed) to the term “Momcologist,” the overwhelming majority of articles on cancer parents only focus on the mothers. Every time I see one, I always type a frustrated “…and dads” or “…cancer parents” in the comment section. We even see it on my daughter Sally’s and other childhood cancer patients’ Facebook pages — many comments are specifically directed at the mothers, not both parents. I can’t tell you how many private messages we receive directed only to my wife Nicole, when I’m the one who reads most of them and handles the replies.
Mind you, in no way am I diminishing Cancer Moms — quite the contrary. The majority of the responsibility often falls to mothers. One of these past Cancer Mom articles actually brought up a valid point: moms create and carry our children for months, so they feel a sense of (unwarranted) responsibility for their children’s cancer that fathers cannot. Dads can’t breastfeed. Dads don’t give the same reassuring motherly snuggles. Moms have a special nurturing skill that’s survived years of evolution. Frankly, most moms do it better.
However that does not and should not discount the roles many Cancer Dads play. Every time I visit the hospital I see plenty of fathers and grandfathers, many of whom are my friends. Through social media I’ve become friendly with Cancer Dads all over the country, the only other guys who can relate to how I feel and vice versa. We’re often relegated to supporting roles not by choice but by need. In many cases it’s the father who has no choice but to keep his full-time job to maintain the funds needed for living expenses, hospital bills and healthcare insurance. I’ll tell you firsthand (and from the knowledge of speaking with other Cancer Dads) that coming to the office every day and not being there for your child who’s fighting a life-threatening disease is incredibly frustrating. It leaves us feeling useless.
None of us is at our best through this journey. Even at work, no magical switch shuts off the immense stress and worry we feel about our family. It’s hard to focus; anybody who’s worked through an eight-hour workday with a hangover can somewhat relate. Imagine working with a hangover every day for months or years. Try showing up at work for a busy day of meetings after a night where you rushed your child to the hospital for a seizure that lasted 45 minutes and landed her in the PICU. You come to work with the added stress of knowing you’re unintentionally not performing to your potential. That comes with a lot of guilt. I know parents who have not been able to maintain their jobs as a result of the stress and exhaustion.
We’re dads. We’re supposed to be the tough ones who rush to the rescue of our kids — especially those of us with little girls. We idolize ourselves as their protectors. Instead, while Mom is at the hospital working with the doctors and nurses on saving our child’s life, we’re often restricted to our desks, doing our best to keep our jobs, feeling helpless and listening to meaningless office gossip. I hear all updates second-hand from my wife and rarely get to ask questions directly to the doctors. I keep a log of all of Sally’s treatment and blood counts so I feel involved. Nicole grows frustrated when I don’t recall something she’s relayed to me, but it’s harder to grasp everything when you’re hearing it all in one conversation instead of living it day in and day out. It’s hard to understand how a certain medicine works in the grand scheme of things and remember specific doses. It creates a tension that likely wouldn’t be as strong if we were both at the hospital daily.
With Mom focusing more on our child in need, Dad often shoulders more of the responsibility at home, especially with siblings. While Nicole would rush off to the hospital with Sally in the middle of the night (which was often in our first year), the duty of informing our sons fell to me. There’s nothing quite like breaking the news to your 7 and 4-year-old that their little sister had to be rushed into the hospital again and somebody not named Mom or Dad would handle school carpools the rest of the week. There’s nothing quite like answering all the questions they have, like is their sister going to die? Or explaining what a seizure is. There’s also the added day-to-day roles Dad often picks up so Mom can get some much-needed, much-deserved sleep.
Childhood cancer can add stress to both the strongest and weakest of marriages. Due to the lack of sleep, mood swings and increased responsibilities, it’s vital that parents work together as a team both to save their child’s life and maintain their relationship. We know parents who have split up during and after treatment. We know moms and dads who are going through this alone. Our hearts go out to them; we admire their strength and can’t fathom the challenges they must overcome.
I echo fellow Cancer Dad Jeff Hendrix of “Praying for Carolyn“ in calling on dads and men to play a more active role both in their families and in the childhood cancer community. It shouldn’t take cancer to inspire dads to become more active parents — anyone can and should do it. I also want to call attention to the incredible Cancer Dads I’ve met through our journey, some of whom I’ve sadly witnessed eulogize their children in recent weeks. If there’s any validity to the term “Act like a man,” it’s these dads who have risen to the ultimate challenge and worked as a team with their spouses to fight this evil monster. If you know one or are married to one be sure to tell them they’re doing a good job, even if what they’re doing isn’t always seen.