On June 29, 2015, my family’s biggest fear arrived. A 1 cm mass was picked up on a CT scan of my chest. It didn’t take a rocket scientist to know what this “mass” was.
Looking back, The Ewing’s had probably started growing many months before that CT. I’ve had lung issues since my initial flamethrower chemo. Two bronchoscopies had been required since this initial chemotherapy. One of those bronchoscopies was ordered four months before the the June 29th scan. I remember coming home very nervous about the results and being overwhelmed with joy when the doctor finally called, telling me it wasn’t cancer. Truth is, it is more than likely the cancer was there in my lungs but too small to be picked up with modern scanning equipment. I lived the next 4 months unaware that the cancer was doubling at a frenetic pace.
As soon as I learned the cancer had returned , my father and I consulted with four of the top Ewing’s doctors in the country as well as four extremely knowledgeable adults whose children had been diagnosed with Ewing’s. These individuals have been exceptionally helpful both personally and in helping us grow our foundation. The majority consensus was that two drug combination of Irinotecan/Temodar was my best and first bet.
We also consulted with two doctors who were running clinical trials on immunotherapy but there was not enough data to suggest that it would work and I wasn’t willing to roll the dice. These same doctors encouraged me to use the I/T cocktail. “Some” patients have had great success with this chemo regimen meaning, long remissions of maybe one year or more.
After kicking a lot of ideas back and forth with my father, I decided to move forward. I would go ahead with the lung resection of the 1 cm lung nodule at the Cleveland Clinic . One portion of the tumor was sent out for genomic profiling (Foundation One) and another portion was sent to Champion’s Oncology. My tumor was flown from Cleveland to New Jersey where scientists at Champion’s Oncology implanted it in immuno-suppressant mice the same day as surgery. We hoped some sort of mutation could be targeted in the genomic profile. We also hoped that the tumor would grow in the mice where they could be test targeted with other chemotherapy agents. It wasn’t the perfect plan but it was the best plan based on the information available and the studies we had done while in remission. Of course, no plan is perfect at this point.
Unfortunately, the genomic profile didn’t turn up anything of use (thus far-I only had three genetic mutations) and my tumor, after four months, was unable to grow in the mice. Champions Oncology was a bust.
Two weeks after the lung surgery I started 4 months of the new chemo. I had five days of chemo one week and then two weeks off. The drugs were Irinotecan (approved for colon cancer) and Temodar (approved for some types of brain cancer). The side effects weren’t fun but they paled in comparison to the original treatment. I was extremely fortunate that my body was able to take the chemotherapy without too much fuss. Many patients aren’t so lucky and have to end this treatment prematurely due to knee buckling side effects.
We were able to go through this treatment without having to have a conversation with our kids about the cancer and all the “unknowns” and anxieties we were facing. We did not know what was going to happen and we decided it would be unfair to dump all of this on them. We seeked advice from a trusted counselor and together decided the best approach for our family was to talk about the situation as the specific difficulties that would impact their lives arrived. This was very important to Paula and me. Our kids knew that Dad was sick and taking medication that made him tired and unwell. Our son knows too well what cancer means. It wrecked havoc in his seven year old mind when Dad was first diagnosed. Many of his friends at school talk about their grandparents or parent’s friends who have died of cancer. Alex brings it up quite a bit with my wife these days and expresses how glad he is that dad is doing ok, has the best doctors and is working with the foundation to do something to help. We are doing all we can to give them as much of the normal happy childhood they deserve. What will happen tomorrow we still don’t know. They are awesome kids.
After 4 months of treatment, my scans came back clean. Once again, I was NED (NO EVIDENCE OF DISEASE). Of course, after the surgery, I had no sign of disease so we don’t know if the chemo actually killed off all the microscopic cells or not (numbers tell me that they may have done their job but they didn’t kill them all off). I’m back on 3 month scans and heading to the Cleveland Clinic on March 7, 2016 for a chest/pelvic ct and full body bone scan.
Two weeks after my chemo treatment ended, Paula and I returned to Memorial Sloan Kettering to have my third arm surgery. Once again, the surgery was performed by Dr. Healey. After a 9 hour surgery, Dr. Healey did another hip graft, checked for Ewing’s (found none), and inserted in two plates and about 16 screws. I currently live with a brace 98% of the time. It comes off when I shower or when I play the guitar. Thank God for the guitar and thank God they didn’t find Ewing’s in my arm. In all likelihood, that would have meant amputation.
Terminal is a word we don’t like to use but one we are getting more used to. Some of the top Ewing’s doctors in the world would say that I’m terminal at this point while others say that I haven’t reached that point just yet. What we do know is that I am considered terminal if the cancer returns one more time.
We still have hope. What this information and all that we’ve learned over the past three plus years shows us is that we have to be better than those that came before us. Our projects have only one goal in mind. Get to the patient NOW.
I refuse to wait for a treatment to find me, to put my head down and take what’s given to me. I will continue to make my own decisions and I will continue to push the boundaries of what we can do as a foundation. There is nobody coming to save the patients with Ewing’s Sarcoma. We are dying and dying at a rapid pace.
We attempt to live one day at a time. Fortunately, all our affairs are in order and the family is as tight as we’ve been. God willing, our efforts (in conjunction with others) will bear fruit. There is hope. It may be small but it’s there. HOPE.
I still consider myself fortunate at this point. Many have suffered far worse. One Ewing’s patient I know has Ewing’s on her heart. She will have open heart surgery where the tumors and a portion of her diseased sternum will be removed. Six months after that, she’ll have surgery to remove one of her lungs.
And there is beautiful Olivia (she is the girl who is on our main page-center picture). Ewing’s has returned once again to her left maxillary sinus cavity. It is larger and more aggressive. Jessica, Olivia’s mother, says the surgery is “the stuff that nightmares are made of. It will leave my baby scarred along her lip, nose, and under her eye, but we will tackle that when it comes.”
The reason we’ve been able to kick the foundation into a new gear is thanks to donations we’ve received. Our donors make a huge difference. The funds we’ve received have helped us in our quest to put an end to Ewing’s.
Please take another look at what we’re doing. Thanks to you, our journey continues. HOPE continues. CSF thanks each and every one of you.