How did we get here?
It all started at the end of May / beginning of June, when Ben had slightly swollen gums, a pale face (the pale face has never been unusual particularly) and an ear infection. The doctor noted he was indeed ‘pale and interesting,’ but didn’t comment further and we were given antibiotics to try if the Calpol and Ibuprofen didn’t work for his ear infection. We were just off on holiday for a week at the beginning of June.
While on holiday, it seemed to take a few more days to clear, though Ben didn’t want the antibiotics, so Ibuprofen and Calpol saw him through. He had mentioned a couple of weeks before that one of our dogs had bumped into him and his gum at the top front of his mouth had been knocked and he felt it was slightly swollen.
I hadn’t been too concerned at that point, but half way through the week, while chatting, I caught sight of Ben’s gums. They had swollen considerably and his teeth were disappearing underneath. I asked him if he was brushing his teeth properly and he protested that he was. I knew the gums looked different and not normal.
On our return home a few days later, we found a dentist, who took a look at him and I already had a doctor’s appointment set up a few days later to ask for a blood test for anaemia. Anaemia runs in the family, so it seemed a possibility. The dentist prescribed antibiotics and said it was likely gum hyperplasia, but that Ben’s teeth seemed fine underneath.
A few days later, having not had much success with the antibiotics, we headed to the doctor’s to be told the swelling looked like something that was found in young and teenage males and could possibly be sorted with surgery. He gave us a form and we headed to Paediatrics in Portsmouth a few days later. We had to go for our youngest for her Optician’s appointment there and her eyes were first class and we then headed to see if we could coax Ben into a blood test.
He was not happy and we saw a Doctor, who was visibly shocked by his palour and immediately asked to see him to be checked. It turned out Ben had been tachycardic for some time, a sign of acute anaemia and we were ushered round to the Day Assessment Unit. It was all very swift, but the doctor said immediately under his breath that there was a problem with his bone marrow.
A few hours later, we were being told they were trying to rule out Leukaemia and the next couple of days, things were more about the fact that they had spotted a couple of cells in his blood stream that looked Leukaemic.
We had been to a homeopath last September and they picked up borrelia in his energetic signature. My gut told me to get him tested for Lyme initially, as Lyme can imitate many illnesses. The Doctors wanted to rule out the more aggressive illnesses first and Lyme was at the lower end of the list.
We were then booked in to Southampton for a room and bone marrow aspirate, which we were told would be the gold star test for Leukaemia.
On the morning we were told it was looking like Leukaemia, the Doctor told James and I with Ben in the room and we were given support from the Doctors and there were tears and feelings of surrealism. You can’t help but think ‘this can’t be happening,’ but quickly, those feelings are taken over with inner strength and determination to simply put one foot in front of another and to be the rock you need to for each other and as a parent for your family and especially for Ben and the girls.
We were transferred by ambulance to Southampton, with James following closely behind. The girls were with family and Ben lay on the bed, chatting to me over the noise of the engine and determined to have me watch ‘Guardians of the Galaxy’ with him on the MacBook as we drove along. Even at this point, Ben stepped up to the plate and was already dealing with the situation with great courage, which frankly blew me away.
The diagnosis day came after his first operation and then he was in for a lumbar puncture and chemo up and down his spine and round the cerebral fluid round his brain to make sure all Leukaemic cells were gone from the bloodstream. A nerve-wracking and distressing time and the waiting in the ward is the worst.
Still, out he came, feeling a little bit sore and then he brightened up and the next day it was onto the first round of chemo …