https://secure.qgiv.com/event/becauseof/team/1043395/
Today marks the one year anniversary of John’s passing from osteosarcoma. I can’t believe it’s been a year – there are times this past year has seemed so slow, and then again so fast. Whatever it’s been, slow or fast, it’s been heartbreaking. We are doing our best to navigate this world – our lives – with the heavy burden of grief and the tremendous ache in our hearts. We. Miss. John.
I haven’t been active on this site as much as I initially thought I would be. Most of my writing is in the form of journal writing – physically writing letters to John. I do write some of our journey on Facebook. You can check for me their if you’d like at Shelly Prinsen Gegen.
I am going to copy and paste two of my most recent FB posts and a link for you to check out.
The Gegen Family appreciates all the love and support that has been showered upon us over the many, many years.
Love, Hope, and Blessings,
Shelly
FB post 8/17/26
Today marks one year without our sweet John. 
In his memory, our family wanted to do something meaningful—not only for John, but for all the children we have lost to childhood cancer, those fighting today, and those who will face this battle in the future.
John spent 718 days fighting osteosarcoma, so we’ve set a goal to raise $7,180 for the Beat Childhood Cancer Foundation—$10 for every day John fought.
And there’s something especially meaningful about this goal…
John should be turning 20 this September.
If 359 people donated $20 in memory of John, we could reach our goal!
This fundraiser will run through the end of September—John’s birthday month AND Childhood Cancer Awareness Month.
So we’re asking for your help:
Donate if you can. And PLEASE SHARE, SHARE, SHARE!
Share John’s story. Share the fundraiser. Help us reach more people and raise money for childhood cancer research and better treatments for kids.
For John. For the children we’ve lost. For those still fighting. And for the children who deserve a better chance.
Thank you for helping us keep John’s legacy of love going.
https://secure.qgiv.com/event/becauseof/team/1043395/
FB post 8/15
The other day, three different photo memories of my sweet guy popped up on my phone.
My heart instantly ached for John—and then my mind jumped to one thought:
He deserved so much more.
Three pictures that tell three very different stories.
I did not post many pictures of John last August. I think part of me thought I was protecting him, protecting all of Team John, and protecting my own heart from seeing just how dramatically he had declined in such a short amount of time.
The first picture is from August 2023—just about 15 days before John was diagnosed with osteosarcoma.
John was active. Happy. Living his life. He had some occasional discomfort below his left knee that we thought was from all the walking he was doing while golfing.
We had no idea what was coming.
The second picture is from August 2024.
During that year, John had endured six cycles of the MAP protocol—methotrexate, doxorubicin and cisplatin. After two cycles, he underwent limb-salvage surgery.
He worked so incredibly hard to rehab that leg. His goal was simple: to golf again.
But the scans at the end of treatment, months earlier, had shown progression in his clavicle, skull and a few lung nodules. That led to radiation and a new treatment plan.
And then there is the third picture.
This picture breaks my heart.
It was taken just four days before this monster of a disease took John’s life.
John was a warrior.
During that year, he endured six cycles of IE—ifosfamide and etoposide. He endured two additional series of radiation. More units of blood and platelets than I could count. Scans, tests, emergency room visits…so much
And still, the cancer progressed.
Into his lungs.
Into his pelvis.
Into the lining of his stomach.
There were several consecutive weeks when treatment had to stop because his platelets had tanked and simply wouldn’t budge.
Finally, with the help of stem cells that had been stored from John’s battle with neuroblastoma when he was just five years old, his counts recovered enough for him to begin an oral medication, Cabozantinib.
It didn’t work.
Nothing worked.
Look what this horrible disease did to my beautiful son.
I know it is difficult to look at the third picture.
But I can tell you what I see.
I see John.
I see a young man full of courage, faith and love.
I see the warrior who kept going when his body was failing him.
I see my son, a brother, a grandson, a friend.
John would not have wanted me to post that picture last year. I know that.
But today, I feel like I would have his full support.
Because I believe John would want people to see the truth.
He would want people to know that we have to do more for children with cancer.
Another mom made a post a few weeks ago showing several children who had lost their lives to osteosarcoma. She listed the treatments each of them had received.
They were nearly identical to John’s.
And just like for John, they didn’t work.
That is something I cannot stop thinking about.
In the past 40 years, little has changed in the treatment of Osteosarcoma.
Think about that.
Decades.
And children are still being diagnosed with this monster.
They are still being given chemotherapy, surgery and radiation—and when those treatments fail, there are far too few options.
Yes, there is research happening. Yes, there are clinical trials. There are researchers and doctors working incredibly hard to find better answers. But there simply is not enough.
Our children deserve better.
They deserve more research.
They deserve more clinical trials.
They deserve new ideas, new drugs, new approaches and new hope.
They deserve treatments that actually work.
So we need more of them.
We need to move faster.
We need to invest more.
We need to find better treatments—not only to save these children’s lives, but to give them the chance to live those lives.
Because John deserved that chance.
He deserved to grow up.
He deserved to go to college.
He deserved to be with his family and his dogs.
He deserved to work.
He deserved to fall in love.
He deserved to get married.
He deserved to have a family of his own.
He deserved to play a whole lot more golf.
He deserved a lifetime.
Our children deserve a lifetime.
And that is why I am sharing the picture I couldn’t share last year.
Not because I want you to see how sick John became.
I want you to see how incredibly brave he was.
I want you to see what this disease took from him.
And I want you to understand why we have to do better.
For John.
For every child fighting cancer today.
Our children deserve more.
They deserve better.