Joni-Mai's story

Our story started about 6 months ago at school. Joni-Mai came home after school complaining of a sore leg because she'd had a fall in the school playground, she'd taken a bump to her leg and it was aching. We took a look and saw there was nothing visible and decided that because she was walking around and the pain wasn't significant, we would leave it and see how she went. A few days later, she was running around as though nothing had happened and we put it to the back of our minds. Within a few weeks, the ache was returning - mostly at night time, after a long day at school. We watched it and after Joni screaming in pain one evening, we took her to our local polyclinic. They examined her and put her new limp down to the fact that she walked pigeon toed, we were advised against Xray - due to the nature of the procedure and her young and still developing body, it would be detrimental to her major organs to Xray her unnecessarily. The doctor believed that she had disturbed a haemotoma and told us to keep an eye on her. If symptoms continued after 6 weeks, we ought to take her to our GP. Joni's leg got better and every now and then she had an ache, but nothing to warrant another trip to the doctor. By now, we were in the summer holidays and she began to limp more and cry out in pain more often that we believed should be normal. We returned to our GP who referred us for an Xray at our local hospital the very next day. We attended our appointment and were told to telephone the GP for the results after 3 weeks. Little did we know what was coming...

Only 10 days after having her Xray, we returned home from school to find a hand delivered letter on our doormat; Marked "URGENT". I opened the envelope wondering what was inside, to find a letter from Joni-Mai's GP asking us to get in touch ASAP as they needed to see us urgently. We got in touch and had to go in to the surgery as soon as was physically possible, the doctor explained to my husband that there was an anomoly on the Xray and it looked as though the bone had healed incorrectly from Joni's fall and that it needed attention. Our GP referred us to the Paediatric registrar in our local hospital, who wanted to see us along with the Orthopaedic department. They explained that Joni would need some blood samples taken and would probably have an MRI scan to investigate further.

THURSDAY 15th SEPTEMBER:
After a morning in the children's A&E, a botched attempt at fitting a cannula and taking bloods with THE biggest syringe with THE biggest needle I had EVER seen, Joni-Mai was moved up to the children's ward. Tired and very upset by the whole ordeal, she was told she had to have a picture taken inside a big noisy doughnut (MRI). She would have to lay very still and it would take very important pictures so we could see why her leg was so sore. In the mean time, one of the orthopaedic doctors took us to one side and explained to us that he believed Joni-Mai had a Ewing's tumour. He told us it was very rare but it looked like it, in her Xray images. Obviously very upset by what we'd been told, we sat and waited for her MRI scan. The night time came and we were informed (after having to ask...) that Joni-Mai would have her MRI in the morning, thus meaning an overnight stay.

FRIDAY 16th SEPTEMBER:
A restless night under our belts, lots of wake ups for Joni-Mai's obs, we had an early wake up. I hardly slept a dot because there were police chatting in the corridoor - protecting a poor little boy from his own parents - all night. Joni-Mai was called for her MRI at 8:30am. She took her story CD's of choice along with her to listen to while she had her scan. Our princess laid still and shocked 6 different radiographers with how well she laid, for 45 minutes. We were informed that she would have results after lunch time. A long 5 hours passed and lots of doctors had been by to see us, when we had the call to say one of the specialists wanted to see us for a chat. He informed us that we'd have an appointment at the RNOH in Stanmore, where they'd take a bone biopsy to confirm their expected diagnosis of Langerhans Cell Histiocytosis. We would have to wait for confirmation of the appointment and details would follow.

WEDNESDAY 28th SEPTEMBER:
Our appointment had arrived upon us and we made the journey to the hospital in green and leafy Stanmore. Joni-Mai had a general anaesthetic and had her bone sample taken. They took 3 bits of bone and some of the surrounding tissue, so they could be sure to have a good sample to test. The results would take up to two weeks, and in the mean time, we were to continue as usual - Joni-Mai going to school and enjoying her favourite things like parks etc. We returned home, after a very long and tiring day. We also had the pleasure of meeting some INCREDIBLY BEAUTIFUL children. All very poorly but all so happy and caring.

FRIDAY 7th OCTOBER:
After a week and a bit of waiting, we recieved the phone call to let us know what would happen next. We were told we would meet Professor Briggs - the man that took her samples - for a meeting on the following Monday. He would give us her diagnosis and tell us how we would go about fixing things. After going on Google, we realised he was a very important man and understood we were in the best hands possible.

MONDAY 9th OCTOBER:
We made our way back to RNOH for our meeting with Prof. Briggs and another person, Chris Henry. With Gramma there to help us with Joni-Mai and Daisy, we went into the room for our meeting. Prof Briggs informed us that Joni-Mai had a rare cancer. She had an Ewing's Sarcoma in her right femur and that she would have intense chemotherapy and surgery to fix her poorly leg. He explained to Gramma what was happening, too and then we had a chat with Chris, who went into more detail about the treatment and what was going to happen in the weeks to come...