In July 2012, the Giordano family’s life took a harsh, unexpected turn and they were forced to make decisions they never thought they would face.
After their son Mathias, an avid soccer player, repeatedly complained about pain in his shin, his parents, Roya and Chris, took him to his pediatrician. An X-ray led to an MRI and the discovery of a tumor in his shin bone. A biopsy confirmed osteosarcoma, a cancer of the bone. Since then, Mathias has undergone numerous rounds of chemotherapy, surgery to amputate his leg, and surgery to remove cancerous spots in his lungs.
With all Mathias has had to endure, he also has had to learn to walk using a prosthesis. It hasn’t been easy for him.
“He first was fitted for a prosthesis in February 2012, but there were many skin issues with the residual limb,” said Roya. “The skin didn’t heal properly so he had to have the dressing changed frequently. During this time he had multiple minor surgeries, but his skin didn’t recover or heal. Then the chemo he was on was also making his skin quite sensitive. He was given a silicone liner, but he didn’t like the feeling of it against his limb. We know him so well and how in tune he is with his body and when he says something is not right, we listen. We told him we are not going to push you, when you are ready to use a prosthesis, you tell us.”
At the end of chemo this summer, Mathias was feeling a little better and anxious to be walking. He was comfortable putting his prosthesis on, but he couldn’t actually move it. He got around the house on his crutches. Then came a fall resulting in a broken wrist – he couldn’t use his crutches for six weeks.
New prothetist – amazing results
It was shortly after that an acquaintance suggested Roya visit with John Hattingh, chief prosthetist and owner of the Prosthetic Care Facility of VA.
“We didn’t think Mathias was ready to see another prosthetist because of his skin issues, but she told me I had nothing to lose, just go meet him and see his nice, modern facility.”
After thinking it over, Roya called for an appointment and the results for Mathias were nothing short of amazing.
“Mathias has done more in the past few weeks since seeing John than he has done in the past year with the other (prosthetic) leg,” Roya said. “He’s like a new kid with the walking and independence. He’s folding laundry and putting it away. He walks to the kitchen and grabs his own drink. Around the house he doesn’t even use the crutches and is completely independent. It’s beyond amazing. It’s just a miracle.”
John Hattingh, CP, LPO, CPO (SA) explains that one of the issues that Mathias has is that he is a very short transtibial patient. “He only has one inch of tibia. His first prosthetist put him on a standard PTB (patellar tendon bearing) socket and that just wouldn’t work because that socket is not compatible with a short residual limb or those with knee instability.”
Instead John designed a supracondylar/suprapatellar (SCSP) socket to extend the socket above the kneecap, which stabilizes the knee and provides additional suspension.
John said that he could immediately see the problem of incorrect socket design because of his experience treating patients injured during World War II. “The philosophy then was that one German hand was the length of the tibia, therefore surgeons cut as much soft tissue away as possible to be right on the bone, the skeletal system because that is where the patient weight bears.
“That philosophy has changed as surgeons try to save as much leg as possible, but in Mathias’ case, there is no soft tissue and he had very little tibia – so his socket design determines how well and for how long he can function in his prosthesis and keep active.”
Mathias also had a problem with a very heavy prosthetic foot. “He was fit as if for a 120 pound person and he is only 70 pounds. His foot was like a brick underneath him,” John said.
His solution was to grin off a layer of carbon so it would be suitable for Mathias’ weight. “I ground off enough carbon to accommodate a 70 pound person, but the foot still has structure and integrity. Now his foot actually works,” he said.
Off to Hawaii
Mathias’ new mobility came in handy when the Giordano family recently vacationed in Hawaii, granted by the Make A Wish Foundation.
He was walking around and it was quite impressive and everyone around him thought so too,” Roya said. “We took a tour of a submarine and the USS Missouri. He went up and down at least 300 steps or more. We were tired afterward, but he was perfectly fine. Then we were given a tour of the bottom of the ship where the crew eats and sleeps. He was lifting his leg up to go across the water-tight hatches, about 45 of them and he did it. He had no complaints whatsoever.
“We also went to the beach and John said that wouldn’t be a problem. He told Mathias not to worry if the leg got sandy or wet. He said, ‘Do whatever and when you come back, we’ll fix it up.’ That made Mathias feel really comfortable and allowed him to enjoy the trip.”
A special bond between prosthetist and patient
In the short time Mathias has been seeing John, Roya sees a strong connection. “I don’t know how to explain it but watching the two interact with each other, I feel like they are on a different language path,” she said.
Mathias will say something and my husband and I will sit there and look at each other not understanding. John will say, ‘We can fix that – I know exactly what you are talking about.’ It’s unbelievable the way they communicate with each other.”
Besides the language of prosthetics, John has been able to connect with Mathias on a deeper level, intuitively knowing what Mathias needed to hear.
Roya explained: “Mathias was always very competitive and he does everything to the fullest; he likes to do things the right way and the right way only. He feels responsible for everything he does, even though he is only 12, but he has always been that way. John told him, ‘I’m an engineer. I can build anything you need, but this leg is not going to work on its own or be useful if you don’t put it to work. So this is teamwork, a 50-50 agreement. You are responsible as much as I am responsible for this.’
“It was this magical formula,” Roya continued. “No one has ever done that with him. Connected with him on that same level. Get in his head and say you’re responsible. But you do your part and I’ll do my part and we’re partners. I thought that was beautiful.”
John will continue to see Mathias for adjustments as he grows taller. “His physician did tap his growth plate so there will be some lengthening of his tibia as he grows,” he said. “I’m currently in the process of redesigning his socket because he wants to play soccer. His current socket doesn’t have the positive suspension he needs. If he were to kick the ball really hard, the prosthesis would follow the ball. I’ll keep the same socket design but add a pin suspension.”
He added: Mathias is just an amazing kid. I can’t do enough for him. It’s been rewarding for me to see him walking. It’s so worth it to get up in the morning and do this.”
The battle continues
Through it all, Mathias remains a positive, upbeat child. He and his younger brother, Troy, have announced they will kick cancer’s [butt], but it continues to be a long, hard road.
“Mathias and Troy are three-and-a-half years apart, but heart-to-heart, they are very close, almost like twins. Troy is good support for Mathias,” said their proud mother.
Mathias continues to work on successfully using his prosthesis, but his battle with cancer is not over yet. The spots on his lung returned and the doctors said the chemotherapy wasn’t working. The Giordanos are currently interviewing cancer specialists around the country searching for their next option.
“We try to stay positive; that’s all we can do,” said Roya. “We’re in it together and we’re going to fight it until there is nothing left to fight for.”