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.
Jake loves sports! He is in his senior year of high school now and loving it. He will be applying to colleges next month and hoping to be a sports announcer in the future since he can no longer play sports. He is a huge sports fanatic. He was the kicker for the football team and as an incoming Junior would have been the varsity kicker. In the spring before his junior year, he started shot put. After a month of practice and one meet, he complained of knee pain. After about a week of it not going away, we took him to his rheumatologist, thinking it was his psoriatic arthritis kicking up. It wasn’t. We had him tested for lime disease. My ex-husband (whose brother died from osteosarcoma when he was 13) asked if we could get a xray. That was a Wednesday, Saturday we had an MRI. Monday I got the call that it was a tumor. We were at Children’s hospital the next day meeting with Dr. Gebhardt and two days later he had a biopsy. That Friday, they confirmed it was osteosarcoma and he went in the next week for a port and his first dose of chemo.
Jake has been amazing with his treatments. He had 9 months of chemo and it made him sick and lose his hair but the worst part was the mouth sores. Other than that he didn’t complain. He had his major resection and a prosthetic put in in August 2016. Continued through chemo but was always in pain with his leg. Went to PT but still, couldn’t walk without pain. Chemo ended in January but his leg still hurt. In April, his 3 month scans were clean. Then in May of 2017, they thought he might have an infection in his leg. We went in and discovered that the metal rod that was now his femur was loose and that was why he was in pain and couldn’t walk properly. They had to replace it with a larger one and now he is walking great. In July he had his 6-month scans and they showed a spot on his lung. It had metastasized and he had lung surgery to remove it the end of July. We had his scans and it spread to his other lung. So he will be having two more lung surgeries in the next two months and then starting chemo in January.
Like most teenagers, Jake couldn’t wait to get his license. That is all he talked about since he was 15. So one obstacle was he was scheduled to get his license in Sept of 2016 but because it was one month after his major surgery and he was in the middle of chemo it had to be postponed and he was crushed. He asked at every doctor appointment when he could get it. We worked it out that in October when he could use his leg (he was still on crutches) and he had a week break from chemo and wasn’t on any pain medications, he finally got his license! But for the most part, because he is 17 and not a complainer, he is trying to be exactly like he would have been so the only obstacles now are fitting in PT, surgery, soon to be chemo and doctors appointments with everything else.
Jake’s diagnosis has been very tough. I feel terrible for Jake’s dad, as he already went through this with his brother. You wonder how it can happen twice in one family. I think I am still in disbelief of it. Jake did so amazing during chemo and bounced back so easily. He never lost weight, had tutors to get him through his Junior year and went into school a lot to see friends. So when they told us it metastasized, it was such a blow because we honestly thought he seemed so physically strong throughout treatment that he beat it. We are back to square one now and I still can’t grasp it. Jake has the thought process “don’t worry, I beat it once I’ll beat it again.” His spirit is amazing.
