“The first thing I remember when we were told that my daughter had cancer, was black. Everything went dark. And blurry.” But what Oded did after that initial shock is having a huge impact on families dealing with pediatric cancer.
Oded Grinstein grew his non-profit MyChild’sCancer, out of the trauma of being a young parent with a child dealing with pediatric cancer. Born from the type of support network he relied on back then, MyChild’sCancer exists today to help families like his and to give hope to new generations of children and families.
Oded sat down with the Good Men Project to answer some of our questions about his experiences as a father going through such a dark and complicated time with his family and about MyChild’sCancer, his passion project that grew out of that darkness.
Good Men Project:
What do you remember feeling when you learned that your daughter had cancer?
Wow. Well, diagnosing cancer is a process that can take weeks, sometimes months, depending on the early signs and how soon they are identified.
In our case it took a couple of months from the first visible sign and until an MRI was done, after which a biopsy was taken, so we had time to prepare ourselves.
Still, I refused to believe that my nine-month-old baby could have cancer. ‘How is it even possible for a baby to get cancer?’ I thought.
Then the confirmed results of the biopsy came in.
The first thing I remember when we were told that my daughter had cancer, was black. Everything went dark.
And blurry. I remember seeing the doctor’s lips moving but couldn’t hear a word after the first sentence.
Everything kept moving but at the same time everything stopped moving. It was a very weird sensation, especially for a guy like me who is used to being in control.
Today I know that what I was going through these first moments, and the hours that followed, was what the experts call ‘a state of shock’.
What kept you going during her treatment period?
Cancer treatment in kids is an incredibly stressful time for any parent, and for each family it looks different.
Some parents have other siblings to take care of, other families need to travel in order for them to provide treatment for the sick child – sometimes even to another country, Some parents need to leave their jobs in order to be with their child hence creating a difficult economic situation that affects the entire family, and so on and so forth. Regardless of the specific scenario, usually not only the immediate family is affected but also the extended family and close circle of friends who pitch in to support.
During these kinds of times parents learn to receive help from friends and sometimes even from strangers.
You learn to forgo privacy. You learn how to ask for help. You learn how to prioritize basic things in life. I had to think about whether I could possibly keep my job while spending my nights with my little baby at the hospital. And what the alternatives were.
In our particular case, not only our daughter was our firstborn – which in and of itself could be a stressful situation to many parents – but our baby had cancer. On top of that, it was a very rare type of cancer (called Rhabdomyosarcoma), in a very critical location in her little body, that required us to travel across the world from Israel to Memorial Sloan Kettering Cancer Center in New York in order to provide her with life-saving treatment.
We were far away from our home support. Both my wife and I had to quit our jobs.
‘Are we doing the right thing?’ was a frequent thought.I cannot even start to describe the immense stress and concerns we were under, with almost every single aspect of our lives.
We were trying to save our baby in a new place with different culture in a different language where the medical system works very differently than what we knew. On top of that, my wife was eight months pregnant when we arrived to NY with no OB/GYN to take her as a patient while we were living in a tiny apartment that we couldn’t afford on the Upper East Side.
At that time I felt like I had to carry my baby through the process, which I also physically did for that entire year. With such high levels of stress and very little sleep, you wonder how long will you be able to keep going? And just then… a fever, a seizure, an infection, need to rush, more doctors, more information, new risks, a new situation, new implications, more unknowns and more uncertainty.
There are moments, or actually I should say in most moments, you can’t even plan an hour ahead – not to mention a day or a week. You’re in the trenches and there’s no perception of time. You just do your best at that same moment, and pray to your god that you have the strength to keep going in the next moment.
So your personal experience led you to launch a platform that helps families in a similar situation.
How exactly does My Child’s Cancer help?
The idea behind MyChild’sCancer was formed during our long months at Memorial Sloan Kettering in NYC.
The time leading to our decision to come to Memorial for treatment was based on a global search for second opinions, which included sending medical information to multiple cancer research centers around the world and contacting multiple experts. The deep research we the parents did on the latest and greatest medicine had to offer for the specific type of cancer that our young daughter had, brought us to a level of knowledge that occasionally surpassed some of the doctors we spoke with.
At Memorial, I started to realize that as much as I have become an expert for the specific type of rare cancer that my child had, other proactive parents also become experts in the types of cancers they were dealing with. You know what they say; parents with a sick kid are the most diligent researchers on the planet.
And so here I was, unwillingly an expert surrounded by other like-minded experts, and I was thinking to myself: where is all this knowledge and experience going to go once our individual journeys are over? What a terrible waste would it be not to be able to share this knowledge and wisdom with other parents who are just now starting their own journey.
So I started recording my experience and my lessons learned and uploaded it to a website under the domain www.mychildscancer.org, so it could be available to any parent anywhere anytime. And I did the same with other fellow parents whom I’ve met and recorded their stories on the types of cancer they were dealing with (such as Neuroblastoma, brain tumors etc.).
The premise was that we could be parents helping other parents. Shortly after that, parents started contacting me to ask for advice and to consult about their individual challenges. Fast forward ten years, and we are now a team of 15 people helping about 60 families a year during the most difficult and stressful times in their lives.
We provide four pillars of support to these families:
1. The first and foremost is personalized research for each and every child, to find the best doctor or treatment in the world for his or her specific circumstances and complications. That alone frequently generates life-saving information.
2. The second pillar includes facilitating treatment, i.e. translating medical documents, reaching out to medical centers and world renowned experts to make them accessible to the parents and caregivers of the child, negotiating prices with hospitals and advising regarding insurance issues.
3. The third pillar is local support, whenever a family needs to relocate in order to provide their child cancer related treatment. For this we leverage the hundreds of volunteers we have spread across the United States.
4. The fourth is our “wiki cancer” – our database of information which we harvest when a family ends the journey, about the challenges they have dealt with and the decisions they have made along their journey. This is the type of information that one cannot find on Google since this is in many cases unbiased information from parents who have been in the lion’s den fighting cancer and have explored all options how to get their child out of there alive.
This has far-flung worldwide impact as far as Europe and Asia.
On our website we have a page called ‘seven first steps,’ where we offer seven steps for parents who just now joined the community of parents to kids with cancer, you can visit us at www.mychildscancer.org/seven-first-steps to read more.
What is the feedback you are receiving? Has the impact you are now making met your expectations from when you started this project?
The impact we have had on the families we help is beyond amazing.
My team and I were fortunate enough to be able to save a 14-year-old girl’s leg from the hip down, a 12 years old girl’s leg from the knee down, a 15 years old girl eyesight, a three-year-old girl’s liver, and I don’t know how many lives we were able to save.
By ‘saving’ I mean that our work, whether it’s research or a different approach based on experts and other parents’ knowledge, yielded information which was not available before and that led to a change in the planned treatment and directed it away from amputation/blinding surgery/liver transplant in these examples.
We do not do any marketing at all. All the families that approach us are being referred to us by other families we’ve helped in the past, and more often than not by more than one family. ‘I heard about your from a number of places so I thought it would be a good idea to call you guys’ is what we usually hear.
To me, the fact that in the past decade we have been helping more and more families each year with zero dollars spent on marketing or PR says it all.
How is your relationship with your daughter today? Did her journey change the way you think of fatherhood and parenting?
Any parent who holds his firstborn baby during long months at a hospital not knowing if she will make it to her first birthday will not be the same person after such an experience.
I have always appreciated life since a very young age, but this took me and my family, to a whole different level.
My daughter is a miracle and according to some doctors we have met, she was not supposed to be here today. And yet here she is, a very bright young girl who aces school and plays competitive sports like soccer and basketball.
She just turned 10 and not a day goes by that I forget where we came from. Every year she has two birthdays: one is the day her mother gave birth to her, and the other is the day when the tumor was removed and she was declared NED (Non Evidence of Disease), the dream of every cancer patient.
Photo credit: Oded Grinstein
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