There is no denying it. We’ve wanted to return to St. Jude Children’s Research Hospital for years but simply could not bring ourselves to do it. This place is special, very special. But we knew the emotional and physical drain of such an experience would set us back. And yes, it did – but it was something that we needed to do nonetheless.

To us, St. Jude is the place that somehow, miraculously, offered us hope at the very same moment we were told there was none. The words we were told – “go home and enjoy the time he has left” shattered us. After three years of fighting battle after battle and gaining ground, the cancer had returned and spread further and more aggressively. All treatments had been exhausted and there were no further options – it’s over. We were overwhelmed in panic and fear and suddenly felt abandoned, lost, alone, terrified and desperate with nowhere else to turn. It was on that very same day when we were told all hope was gone – that’s when I discovered through my tears as I searched the internet, that St. Jude opened a new clinical trial for children with recurrent Medulloblastoma – THAT DAY! Within two days, we were at St. Jude.

It was a very emotional and difficult time for us, yet again. We were panicking. Honestly, I didn’t know how much more we could take – as if our own hearts were about to fail and end our existence. Tyler has been through so much in the preceding three years that the fear, anxiety and setbacks should have already killed us.

The precision and efficiency in how St. Jude functions and treats both it’s child patients and their families is unlike any other. It’s unbelievable – so much so, that you find yourself trying to find deficiencies. That kind of care and attention to detail brings healing to your mind, body and spirit in itself. Its amazing and beautiful – a necessity that every employee and volunteer at St. Jude understands. It’s beautiful!

Despite the comfort and confidence of St. Jude, we never forgot why we were there. This was our last chance effort to save our precious and amazing Tyler. The fear and anxiety remained and never left us. It’s still what keeps me awake at night.

While at St. Jude I would often find myself in the chapel. One day in particular, while still staying in the Memphis Grizzly House on the St. Jude campus, I remember being in the chapel for 10 or 15 minutes. I was in there alone the entire time. Suddenly, someone was whispering into my left ear and I felt a hand resting on my left knee. The whispered words were … “It won’t be easy, but he’ll be fine”. I was shocked as my eyes widened and I looked around the chapel and saw no one there, no one anywhere! I felt the heaviness of my heart lighten as if a large heavy weight had been lifted from my chest. I remember going upstairs and telling Pam and Tyler what I had just experienced, and with that, a renewed feeling of hope energized us.

After that experience, I was certain that the clinical trial Tyler was participating in was going to be a success – this would be the cure for his disease, recurrent Medulloblastoma and Tyler’s name would be printed in all the medical journals. We were going to beat this cancer and Tyler will make National, no, world news … Tyler P. DeMarco, Makes Medical Miracle Cancer Breakthrough!

Over the course of the next five weeks Tyler’s cancer was not progressing – that was great news! Then, after completing two months on the St. Jude trial we received the devastating news. The cancer once again started growing and spreading into other areas of Tyler’s brain. This time it had also spread into his spin. The clinical trial for Tyler had failed.

We made it home in time to celebrate Tyler’s 12th birthday on May 16th, 2009 where he spent his special day with his friends playing laser tag in Saratoga Springs. I remember driving Tyler and his friends home that night, dropping them off one by one and hearing them laugh and talk about how they were all going to be friends forever, into adulthood and continue to do things together. They talked about taking turns driving to different adventures as adult friends for life. I drove silently with blurry eyes and that heavy weight in my chest. It was crushing me as I listened to them talk – to hear dreams that will never be fulfilled. Nine months later Tyler slipped away from us and was gone from our lives. We will never recover from that loss. We will never be the same.

The clinical trial that Tyler participated in at St. Jude is where the doctors and scientist had learned that Medulloblastoma is not the cancer they thought it was. They learned that Medulloblastoma has four sub-types; two of those four sub-types are always fatal. Armed with this information, the research has progressed in a positive direction, and as of 2017, they have been able to save the life of at least one child with the fatal sub-type of recurrent Medulloblastoma. That child still survives to this day.

We chose to finally make the trip back to St. Jude, despite our emotional pain because we know in our hearts this is what Tyler would have wanted. I’ve said it before and I say it again – the Tyler DeMarco Foundation exists solely because it was Tyler’s wish – to create private rooms for children treated for cancer at Albany Medical Center Children’s Hospital and to help fund the cure for Medulloblastoma at St. Jude Children’s Research Hospital. Since 2010, that’s exactly what we’ve done. Tyler DeMarco Foundation pioneered and funded the creation of the brand new unit now known as ‘D7-East’ that opened it’s doors in January, 2015. D7-East houses 11 private rooms specially designed for inpatient children being treated for various cancer diagnosis at the Children’s Hospital at Albany Med. Now, just last week, on July 22, 2019, Tyler DeMarco Foundation gifted $30,000.00 to St. Jude CRH. This latest gift brings our total gifting distribution for funding St. Jude’s Medulloblastoma research program to $67,000.00.

Our vist to St. Jude was arranged with the help of Mrs. Paula Head (on right in below photo) who is a Sr. Philanthropic Adviser at St. Jude. Paula shared her personal story with us as she took myself, Pam, Tom and Ray on a tour of the hospital. Paula lost her precious 9 year old daughter, Carson to Osteosarcoma, yet another devastating Childhood Cancer, in 2015.

Carson’s Story: https://www.stjude.org/about-st-jude/stories/making-a-difference/carsons-legacy-lives-on.html

Paula taught us a lot about the hospital; many things I remember, many things I have forgotten or simply never learned while I was there. Still, to this day, when I hear the name Danny Thomas, my eyes fill with tears. The story behind his promise to God is simply amazing. It’s Mr. Thomas’ promise, hard work, dedication and fight to get others to support his vision that gave us St. Jude Children’s Research Hospital – the only research and treatment facility of its kind in the world!

I’ve always wondered why – why St. Jude Children’s Research Hospital is located in Memphis, Tennessee? I asked, and Paula answered … When Danny Thomas was planning on building St. Jude at the start of the 1960’s, a young black boy in Mississippi (close to the Memphis, TN State line) was struck by a car and was in serious condition. Hospitals in the area were slow to treat the young boy due to racial discrimination issues of the time; the young boy then died. Mr. Thomas was infuriated by the lack of compassion shown by the area hospitals and vowed to build St. Jude on the boarder of Mississippi and Tennessee in Memphis to demonstrate that “his” hospital will treat EVERY child no matter their race, color or creed to demonstrate that every child is precious and deserving of the very best medical treatment without delay. Mr. Thomas wanted St. Jude to be the example that set the standard for the rest of the world and he wanted that example established at the doorstep of the hospitals who failed that precious little boy … building St. Jude in Memphis, TN accomplished that mission.

When we were at St. Jude with Tyler in 2009, I clearly remember that the daily operation costs to run St. Jude totaled 1 million dollars per day. Today, as Paula told us, the daily operation costs to run St. Jude is now up to 2.4 million dollars per day. St. Jude treats over 8,400 children per year.

The tour was difficult, many tears were shed and our pain was relived. Did Pam and I want to run away from the hospital? … Yes, we did; but at the same time we knew we were meant to be there, we needed to be there. Much like facing your demons, we had to do it – we had to share this place of hope, love and purpose with our friends Tom & Ray who were also brought to tears. There is no avoiding it amidst all the precious and beautiful bald heads and smiling little faces that adorn the hallways within and throughout the sanctuary of this magical place. It’s an experience that forever changes you. For the children, parents and families – it’s an experience that never leaves you – it clings to you, the good, the bad, the ugly – but its still somehow a place of beauty, magic and hope – its an earthly miracle that brings what’s truly important into focus.

By Don DeMarco