Bretton is a very funny happy selfless kid. He is always trying to make the people around him laugh. He is more concerned with others than he is himself. He loves hockey and we are thrilled he has started playing again.
Bretton was diagnosed with Osteosarcoma on May 18, 2016 after experiencing pain, swelling, and a visible mass. He has had 30 rounds of chemo, 6, surgeries, countless hospital stays, blood draws and so forth. He lost his lower leg so he now has a prosthetic leg.
As a single mom, I had to quit my job to take care of my son. We also lost our apartment while my son was in treatment. We are staying with family until we can get back on our feet. Things have to be scheduled around multiple doctor appointments and always consider that he only has one leg.
Jorge is a little shy. He loves music, Twenty one pilots, video games like FORTNITE and is a big fan of STAR WARS!
Our Jorgewas diagnosed with Osteosarcoma on 06/28/17. He started limping and then had a tennis ball sized lump. He is followed a very aggressive chemotherapy until February 2018 and entered in remission in March 2018…but sadly we are again in the fight because last scans showed metastasis in his lungs.
He has had LSS in the right leg, tube in his ears because he lost hearing due to chemo, cardiomyopathy, and this last months 2 tracheotomys.
Our family faces lots of struggles like every cancer family. We have a little who will be 4 soon and we have to spend time apart when Jorge is in the hospital. I’m the only one working and some days I need take off so I can care for Jorge. Our world has changed so much but we appreciate the good moments more.
Will’s journey began when we went for a routine MRI on April 17th. He has something called Li Fraumeni Syndrome, which means that the TP-53 gene that is supposed to protect against any bad cell growth is mutated. So Will has no protection against getting tumors. Therefore, the only protection he gets is an annual MRI to check for anything suspicious.
This one proved to show an abnormal growth, which his oncologist then suggested an immediate X-ray. This only showed more abnormal pictures with no hard evidence of what this abnormal growth was. We immediately scheduled an appointment with an orthopedic oncologist. He was actually out on medical leave, so instead we saw his Nurse Practitioner. She was very informative, and consulted with the doctor who requested a biopsy. A week later we learned that Will in fact had another tumor. This time it was on his left hip.
The next few weeks seemed to last a lifetime while we were seeking second opinions at CHOP. Dr. Halpern encouraged us to do so, since that was what we had done nearly five years earlier to be sure several doctors agreed on the protocol, even as it changed throughout treatment.
On May 23rd, we met Dr. Womer. He specializes in sarcomas and his kindness won me over. Because Will has this genetic syndrome, it seemed natural to want to be at the best children’s hospital. I even looked at Boston and Washington Children’s hospitals. But none made more sense then CHOP.
It was within a week of meeting Dr. Womer that Will began receiving chemo, May 31st, to be exact. Cancer sucks…and chemo sucks more! But I know this is the only thing that can help him survive.
A typical osteosarcoma protocol is to treat with chemotherapy and then surgery. The chemo helps the tumor stop growing and to harden it so surgery will be “easier.” His surgery is scheduled for the end of August.
Our family has been having to drive to and from CHOP from our home in NJ and the weekly drives have been taxing. We also have been having to get hotels when the Ronald McDonald House is not available. This has been trying for us, but we are a strong family and continue to fight hard and stay positive in order to beat this.
Seth had just started band camp in August and he had to carry a huge tuba. He kept complaining that his shoulder was hurting. I took him to his pediatrician and they said nothing was wrong. Then in October he got hit with a football and again back to the doctor and said it was sprained.
We let it ride out and then the week of Thanksgiving he fell on it skateboarding and it got worse. He slept the entire time, was in constant pain and was begging to do an x-ray. I finally got him another appointment and finally the doctor ordered an x-ray.
Mother instinct told me to hang around since we lived out of town. I got a call 30 mins later for us to come back in and he needed to talk to us. We then came back in and they rushed us in to a private room and told us that he had a tumor. That he was having a MRI done that night and then tomorrow they set up a appointment with a doctor at Cook’s Children to see an oncologist. November 28, 2017 is when we found out he had cancer, bone cancer, Osteosarcoma.
He has been handling his treatments fairly well. Luckily he hasn’t needed any infusions or platelets!
He’s had some obstacles that has come up. The cancer started in his arm but made its way to his lungs. The chemo isn’t working on his lungs and they removed four live cancer nodules out of his left lung and eight live nodules out of his right lung. They’ve also noticed swollen lymph nodes under his left arm now and it is too deep to biopsy right now. He’s supposed to resume chemo again soon. He’s still inpatient for his right lung surgery and hoping to be discharged soon.
Stephanie is a very hopeful girl and tries to make the best of her circumstances. She wants to write a book about her story to teach other people like her how to live with this type of diagnosis.
Stephanie was diagnosed with Osteosarcoma in March of 2016 at the age of 17. She started having pain in the mandible and we took her to the hospital where they told us that the mandible was misplaced. A month after her surgery, during a follow up appointment, they discovered that she had a lesion. She has been through nine surgeries, had a tracheostomy, 10 months of chemotherapy and now we are waiting for a wound to heal so she can start radiotherapy.
Our family is struggling because we are far from our home in Puerto Rico. Stephanie’s brother, father and the rest of the family are living in Puerto Rico while I (mom) and Stephanie stay in Jacksonville for treatment.
Two weeks leading up to Blasa’s diagnosis, she had the three doctor appointments and two ER visits. We went to her first appointment with with complaints of leg pain. At her second appointment, she had completely stopped walking. On our second trip to ER, she was transferred to a children’s hospital. There she was treated for 3 days for constipation. On the third day they decided to do MRI and CT scan where they found she had tumors on her spine and spots on her lungs.
She was diagnosed with Osteosarcoma in September of 2016. Within three months she was walking again. The tumors had started shrinking with 11 months of intense chemotherapy.
Her biopsy was sent to a different hospital in August 2017. We had found out she had been misdiagnosed. After everything was reviewed, her diagnosis was germ cell tumor. With new scans and blood work done in September of 2017, her scans came back negative for disease and she’s had her broviac removed.
It has been eleven months of up and downs. We are now so grateful that she is starting to have a childhood every child deserves. Every step of the way she has had her two big brothers loving, supporting, and pushing her to always smile while she tries to overcome whatever was thrown at her.
