In seven months Noah, 10, saw his world change after being diagnosed with a life-threatening tumour on his spine in May 2017. Noah, from Bilston, needed emergency surgery to remove the mass, which was only discovered after it began causing scoliosis of his spine. He then went to Florida for Proton Beam Therapy, to remove the slithers of tumour unable to be removed through surgery.
His mum, Samantha, said: “When we got the diagnosis at Birmingham Children’s Hospital, they told us it was a stage 2 Ependyoma the length of four vertebrae and was crushing his spinal cord from the inside out. The build-up of pressure was what caused his scoliosis. They think he may have had it for quite some time.
“The doctors cleared the decks and he was in for surgery the very next day. There was no real time to process. If it had gone untreated it would have killed him. He was in surgery for 8 hours and it was the longest day of my life. I was scared to leave the building.”
Over the next five weeks, Noah stayed in hospital for rehabilitation. The surgery had left him unable to move his arms and legs, and although movement came back quickly in his arms, his leg movement was much slower. He now uses a wheelchair, while he continues to develop his leg strength.
Samantha added: “Noah had his 10th birthday in hospital too but luckily we had managed a surprise party for him at a diner across the road where we got as many people there as possible. Noah said he loved it and never thought anyone would do something like that for him. It gave me a proper lump in my throat hearing him saying that.”
When Noah left hospital, he faced new challenges including navigating his home with his wheelchair and coping with an uncomfortable back brace. On 3 July 2017, the family got the news that they would be flying to Florida for proton therapy and would be leaving three days later. That meant him and mum, Samantha leaving his five siblings behind with their dad in Bilston.
“That is just one of the times CLIC Sargent was so helpful” added Samantha. “Our social worker collected all the forms for me to apply for grants. She brought all the papers and I filled them in on mass. The NHS pay for your flights and accommodation out there, but we still have to feed ourselves, and all the family at home.
“She also arranged grants and helped us get money from other places because just keeping everything ticking over financially was quite hard. We are very lucky to have a supportive family but we did feel like we were sponging. You are just take take taking and you have nothing to give back. The financial side of cancer is very difficult, but CLIC Sargent is there to help.”
She added: “CLIC Sargent are always there. They helped us get our money back when we had to cancel a big holiday. It is just reassuring knowing that we have that support behind us. You are in no position to be fighting battles because you are actually already in one. It’s nice to know we have CLIC Sargent in our corner.”
“Noah rang the end of treatment bell in Florida in September, following his proton therapy. His prognosis is just a big question mark but we just have to hope. He had his last MRI in October and it wasn’t showing anything they weren’t expecting to see.”