Bob's Story - 1972

I met Bob in the summer of 1997. I was immediately attracted to this very intelligent and funny young man.

His parents had told me that in 1972, when Bob was only a year old, that he had been diagnosed and treated for Wilms' tumour. At the time, it didn't mean anything to me. They might as well have been telling me that he had a bad case of the chickenpox as a child. I had no appreciation for what they had all been through. Towards the end of the summer of '98, our son was born. The first year of his life was unremarkable. Then, at the beginning of the fall in '99, he was diagnosed with bi-lateral Wilms. It was a shock, but not a shock.

I looked at Bob who was 26 years post treatment and I didn't, at first, understand how serious the situation was. Our son was going to be fine, just like his dad; it's no big deal. But as we entered into the chaos of worry/anxiety/fear/frustration that is treatment, it started to dawn on me that what Bob had been through was more than just a bad case of the sniffles.

Bob's treatment was not something that he or his family talked about much before our son was diagnosed, so I had no concept of what was involved. It was a blessing and a curse that his parents had been on a similar path before us. It was helpful to us because we had the benefit of their experience; it was helpful to them because there was some personal healing in seeing how treatment had changed [for the better]. The curse? Well, that's easy, the cancer.

I still don't have the full story about Bob's diagnosis and treatment because I was not there, but here is what I've been able to piece together from various conversations I've had with his parents.

When Bob was a year old he started running unexplained fevers that would come and go which were usually passed off as viruses. One day, in his diaper, his parent's noticed a very large blood clot and took him [and the diaper] immediately to the doctor. The doctor referred them to a specialist [a urologist] and he was seen a couple of days later. The urologist had them take him immediately to the hospital and the diagnosis of uni-lateral Wilms was made [left kidney].

The rest of the details are a bit fuzzy, but basically, he had surgery to remove his entire left kidney followed by chemotherapy and a weeks worth of radiation treatments. His stitch site became infected and it had to be recut and resewn, the result of which is a rather deep scar on his left side.

His father has told me often how pleased he was to see our son have a permanent port [VAD] through which medications, blood tests and IV's could go through and he would tell me of the countless times they had to keep repoking Bob. The blown veins, countless attempts [which failed] to get a line started. How Bob would scream and thrash about as it would take sometimes half an hour to get a line in.

Fortunately, Bob does not remember much of what he went through.

When we met, Bob had complained about leg pain and had been to see a couple of doctors. They ran tests for arthritis and lupus and when those tests came back negative he was told he just needed to exercise more. The pains continued and got so bad at times that he'd drive himself at 4am into the hospital because it hurt so bad. They'd give him some Tylenol 3's and send him home.

As our son progressed through treatment and we were warned about possible side effects, both short term and long term, I wondered if Bob's pains were related in any way to the treatment he had as a child and realized that it had been over a decade since he had been seen for follow-up.

I called the Cancer Agency and asked them if they had or knew of a long-term follow-up clinic or, at the very least, had a list of doctors who were experienced in long-term follow-up that Bob could see. They asked if he currently had cancer. He didn't. Then they told me that they didn't know of any clinic and had no list of follow-up doctors. I hung up the phone and started crying. This wasn't just about Bob, it was our son too. I was devastated in thinking that when our son got older he'd have nowhere to go for follow-up and would be left to endure pains with no help.

A couple of days later we went into the hospital for our son's last chemo treatment. We were introduced to Luke's long-term follow-up nurse at this visit. I asked her what was going to happen to our son after he turned 18 and was no longer a child. Who would follow-up on him then and where would he go if he had any problems? She told me that he would be followed up by the Cancer Agency, the very same agency I called only days before. I remember making a comment about how that frightened me and I began to tell her the story of the call I made and what Bob had been going through. I talked and talked and she listened attentively. She told me she didn't understand why I was given the information I was given since the Cancer Agency runs a long term follow-up clinic through their agency. No matter, she grabbed a pen and piece of paper and wrote down some details of Bob's previous treatment and his current symptoms and told us to leave it with her.

Within days we got a phone call from a radiologist who specializes in long term follow-up care and Bob was in to see him within weeks. The appointment was very thorough and a CT scan was ordered to check things out. The day after the CT scan we get a call for Bob to see a neurosurgeon as some masses were found along his spine. We see the neurosurgeon who orders a MRI and it's discovered that Bob has 3 neurofibromas growing out of the nerve on right side of his spine and one small one on the right side [all in the radiation field from when he was a child].

The neurosurgeon felt that the neurofibromas were benign and explained that he didn't want to disturb or operate on them because they are growing out of the nerve and to remove them would more than likely cause paralysis in the legs. So we're in a watch and see type of follow-up. Bob is supposed to be getting MRI's every 6 months [due to long wait lists, however, we'll be lucky if he is seen every 12 months…….don't get me started on how upsetting THAT is]. In the meantime, he's been for several evaluations that have ruled out von Recklinghausen's disease [neurofibromitosis 1 (NF1)] and NF2. The neurosurgeon originally thought that Bob had this genetic disorder and that's what caused the growths. Since it has been ruled out, however, it is more likely that these neurofibromas are post-radiation induced.

The good news is that he's being watched and no longer ignored. He's seeing the people he needs to see in order to ensure he lives a long and productive life.

I get angry, at times, thinking of all those years that doctors dismissed his symptoms and would not even entertain [and rule out] any possible connection to his diagnosis and treatment of Wilms. I get scared thinking about where his life might have gone had that wonderful angel of a long term follow-up nurse at Children's hospital not been there to listen and take action.

Never give up; never stop talking because eventually, someone will hear.