..an interview with a mom & her son:
“He started in the Special Olympics when he was little and we were military, so we moved around, so it was kind of hard to find. Tell her what sports you did…’
‘Buddy Bambinos Baseball (softball). They give you like shirts/jerseys.’
‘Tell her what other sports you did..’
‘Bowling. We got bowling shirts and I have a Seattle Seahawks ball. I’m still trying to get a Raven one. My bowling bag can carry two bowling balls.’
‘And tell her what other sport you did.’
‘We were going to do golf, but we didn’t do it because that’s when the amputation happened…but tell her about the other one you did..’
‘Oh, they were Bocci balls. I’m the oldest brother. Then my younger brother, then my sister, and my little sister lives in Hawaii.’
‘Yeah, we had him first. My husband and I are high school sweethearts and I had him at 18. He was in college at the time and was thinking about how he could support a kid and so he decided to join the Army and he left and he proposed, so we decided to get married. So. yeah, he was about 6 months old at the wedding. We’ve kind of been away from our family ever since. They’re in Arizona.’
‘Arizona Cardinals has a football stadium. I like Seahawks, Ravens, Falcons.’
‘He follows all the sports. We call him Mr. ESPN because now he’s tracking basketball now that football is over.’
‘My dream is to get to the Seahawks stadium and go into the locker room and meet Russell Wilson.’
So, yeah we had him. We were in North Carolina at the time. Then our next son came along and our first son was about five years old when we could tell the difference between him and his younger brother. We did testing and shortly after that, he had a fall and became epileptic. So at age 3, he had epilepsy. We were up and down the road from North Carolina to Water Reid so many times and he was on SO many medications. He’s been on so many medications since three years old. From there, we moved to Hawaii. Then in Hawaii, he had Strabismus (lazy eye) and he had to have surgery on that. He had that twice in the 3 years we lived there. He’s also had brain surgery twice for epilepsy. His whole left occipital lobe is gone. He’s still on epilepsy medication, but a lower dose and he hasn’t had a seizure since.
He has had a rough life.
Then we were living in Waldorf and he kept complaining his knee hurt. You know kids get growing pains and so we would give him some medicine and thought he’d be fine. He kept complaining and kept complaining so we decided to get it checked out. Well, my husband deployed to Afghanistan for about a year, so I took our son to the doctor and they did the x-ray and said they’d contact me. Well, I’m at work in DC and I get a call from the Oncology orthopedic’s office wanting to schedule an appointment. I was thinking they had the wrong number and she realized my doctor hadn’t contacted me. So, I started freaking out. We scheduled an appointment for the biopsy.
My husband came home within the week after we found out he had cancer. Thursday was five years since we found out he had cancer. He’ll be 30 in July. We did chemo, but the orthopedic surgeon did a limb salvage, but cancer came back and the cancer was climbing itself up his leg. He recommended amputation mid-thigh. My husband was really hesitant about it because with being in the military, I think he knew what that was really going to mean for our son, but we decided to move forward and do it. Ever since then, it keeps coming back…it just keeps coming back; from his hip to his shoulder, to his tailbone, now he’s back, and he has spots on his lungs. We’ve done chemo, but it won’t work, and a few other things… so, now our only option is the trials.
Usually, the first dose with sarcoma gets it. For this type of cancer, radiation works really well and the spots can disappear, but they said he has too much radiation, and now some spots have gotten bigger. The spots on his spine and hip have him in so much pain. In January 2020, he had a bone marrow transplant, which is a trial Johns Hopkins was doing. It was a trial to remove everything out of his body and teach his body to do new stuff. His sister was his donor. That was so scary. It was intense. They wipe his body out and then add the new bone marrow. It was scary. We also decided to not only do conventional medicine but unconventional medicine. So, he visits a wellness center and they are so good to him. We’re thankful to have the support. The kids are so great about it~I mean, think about it; your older brother is really more like your younger brother and kids at school don’t tend to treat special needs really well, so the kids rally around them…including their friends. They watched out for him in school.
So that was good.
I get down. I do get down. But I have faith. I totally have faith that he can be healed and God will heal him. Then there’s that part of me that knows it may not be in God’s plan. It may be that God is ready for him to come home and I have to accept that….I think deep down I’ve learned to accept that. He was God’s kid before he was mine. God just let me borrow him, so I have to cherish every moment and I think that we do. I just have faith that God can still heal him. If He can move mountains, then he can heal him. I have faith that it can be done. I really do. I feel like he’s had a hard life and he is in a lot of pain….you’d almost rather them not be in pain….but we don’t want him to leave.
We even left our Christmas tree up because we don’t know if he’ll be here this Christmas. We decorated it with yellow ribbons for bone cancer for three years now.
It’s our TJ tree and we aren’t ready to take it down.”