Health Experience: It finally hit me – my child had cancer

From a lump in a knee to a rare form of cancer, Ronan’s journey has been both emotionally and financially difficult

Tue, Jan 28, 2014, 10:06

Tuesday, April 30th, 2013: Our Ronan has just turned eight and is still recovering from an operation to remove a lump above his knee. His doctor said it was like a twisted varicose vein.

He was on a waiting list at the Mid-Western Regional Hospital, Ennis for a year when we noticed it was getting bigger and he was bumped up the list.

We went in today expecting to be told all was okay, but the surgeon said a histology report showed Ronan has a rare form of sarcoma called Dermatofibrosarcoma Protuberans (DFSP).

DFSP is a rare type of sarcoma/cancer, a soft tissue that develops in the deep layers of skin. It is sometimes described as having tentacles that can grow into surrounding fat, muscle and even bone. The odds are one in a million. We are in total shock.

Friday, May 10th: We’ve already had calls from the secretaries of two surgeons and an oncologist with Our Lady’s Children’s Hospital in Crumlin. They discussed his case at a weekly team meeting. An oncologist called me yesterday. They need to do an MRI on Ronan to get a clearer view of the cancer before any operation.

Saturday, June 15th: The MRI is next Friday. There is no stopping it or the outcome. The fear sweeps in like a tornado, hoping the cancer is only as deep as the tissue.

Whatever about the cancer, Ronan’s autism is for life and unless he somehow gets the help he needs with his social skills and independent living, where will he be?

He has poor upper muscle control, and his speech is not in a regular conversation style, unless it is about Angry Birds or Skylanders. He’s gentle, and has shutdowns as opposed to meltdowns. When I look into his eyes at times, I feel he is giving me the window of his heart and soul and it blows me away.

Ronan made his own toast this morning for the first time. I’m so proud of him.

Friday, July 5th: A doctor from the oncology team just called to say since Ronan’s MRI didn’t show any mass or sign of further cancer they would rather leave it and see him again in six months. Completely devastated. I can’t have my baby walking around waiting for the cancer to grow more. I’m so tired of fighting.

Monday, July 8th: Emailed oncologist Dr Pears’ secretary, Rona, today. “Dear Rona, attached are pictures for Dr Pears to bring to the meeting on Thursday. I do hope Ronan’s case is going to be discussed as I got a call from another doctor on Friday which left me devastated and that feeling of complete hopelessness of having to fight yet once again for services for Ronan.”

Tuesday, July 9th: I got a call first thing this morning from Rona. She said Dr Pears read my email and wanted me to know she was going to bring up Ronan’s case at the tumour meeting and also to set up an appointment for July 17th. So relieved. I had no idea of how lost and hopeless I had felt until I got that phone call.

Wednesday, July 17th: The appointment with Dr Pears went well and she explained more about the process the pathologist goes through with samples and how hard it is to put an exact location on the remaining cancer cells left in Ronan.

Like spreading pepperoni on a pizza and then trying to put all of the cut parts back together exactly where they were on the pepperoni stick. Somehow, when I put things in my head in layman terms I always seem to compare it to food. Feel so much better after talking to her.

Tuesday, September 17th:
Ronan had an ultrasound today and met Dr Pears who had arranged for him to be seen by a plastic surgeon, Mr David Orrs. Out of curiosity, I looked up both specialists online and found Dr Pears is on the board of Barrettstown Camp and Mr Orr is involved with Operation Smile. This made me feel a lot better about putting my trust in them. Plan is to operate on Ronan on October 3rd.

Wednesday, October 2nd: Wheelchair organised with the Clare children’s services. Car filled to the brim and we are on our way. All going well until hospital called to say there was no bed available. Operation is postponed. Oh Lord, what a lesson to learn. Back home.

Monday, October 7th: Operation went ahead today. I went with Ronan into the operating room until he was out. The staff in the hospital are great. After the operation he had a dressing on the DFSP leg (his left leg) from thigh to toe with a splint along the back of his leg to keep it straight.

Monday, October 14th: A week post-surgery and Ronan’s dressing has been removed. It looked like he had suffered a shark bite, just a chunk of flesh missing from his leg. Burn unit nurse and a member of the plastic surgery team said the skin graft looked wonderful.

I stayed until he dozed off and then I went outside behind the smoking shelter and cried my eyes out. It finally hit me then that my child had cancer.

The week passed in a blur, all sense of time is lost in a hospital when you sleep on a mattress on the floor, waiting on pathology results, hoping they got all of the cancer.

My husband, Paul, stayed with Ronan for two nights to give me a break and spend time with our other son, Kieran.

Friday, October 18th: Ronan and I are home after 11 days in the hospital. I was never happier to see our yellow house. Paul and Kieran are delighted with our return.

Financially, between health-related costs along with all the usual everyday stuff, we are in dire straits and are already on interest-only payments for our mortgage.

Along this journey we were helped by a few charities, but two stand out – Aoibheann’s Pink Tie and Hand in Hand West, who arranged for Ronan and Kieran to release baby seals called Hero and Samson back into the sea at Salthill. Wonderful.

We’re not out of the woods health-wise. Ronan has an upcoming appointment with the genetics department to be tested for Li-Fraumeni Syndrome, which greatly increases susceptibility to cancer.

Wednesday, January 22nd, 2014: Ronan had blood samples taken last month for the Li-Fraumeni Syndrome testing, but it will be four-six months before we get the results. If it comes back positive then, yes, he has LFS.

But if it comes back negative, it doesn’t mean he doesn’t have it, as he hits all the criteria. I try not to dwell on this on a daily basis and, for the most part, it works.

When we arrived back in Clare after the operation, Paul had a letter from Ennis General Hospital saying they apologised for Ronan being on the waiting list for so long and does he still need the surgery.

Imagine the fear if we were still waiting for that surgery to find out it was cancerous? How much deeper would the sarcoma have grown?

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