KatieBear's blog: "Ryans Life"

Hello Everyone,

This is Ryans Story.

When Ryan was conceived it was a surprise. There were several reasons why I thought I would not fall pregnant but fate is fate and Ryan was born on the 14th Of October 2006.

Ryan was very healthy and just beautiful. He barely even cried when he was born and when I took him home he was and still is just an angel.

When he turned Three months old I started to notice every now and then he would wink at me. At first I dismissed it as just a baby thing but it seemed to happen more often. I decided to let Christmas pass as we couldnt get into the doctors anyway and let the maternal nurse decide at his four month immunisations.

His immunisaton date came quickly and he had his needles. It was the first time I'd seen him scream. It was obvious something was wrong, HE was screaming with one eye wide open. His mouth on one side was also pulling up.

Within a week we were at the doctors. HE said he suspected Bells Palsy as the issue. I brought him home and looked up Bells Palsy to find that Babies do not get Bells Palsy and Facial Palsy could be the result of Ramseys Hunt.

Ryan had an MRI one week later. I asked the Nuerologist if it could be a tumor and she said "It was practically Impossible"

The MRI was meant to be 30 minutes....2 hours later I was greeted by the same woman and told my son has a brain tumor and his father and I had to come upstairs and talk to her.

The next 5 weeks consisted of three biopsys and 2 more MRI's as they could not diagnose the tumor. Oncologists thought it was a carcenoma and prepared me for the worst but they were wrong. By this time Ryans palsy had become much worse because of all the swelling in his skull.

Ryan has a Juvenile Xanthagranuloma of the temporal fossa. Although this type of tumor is not usually dangerous the doctors have never treated one in the brain before. They have also never treated a baby with one.

The tumor cannot be operated on, as you can see its like a stringy web which is covering important nerves affecting his facial nerve function and some hearing. IF not treated successfully it will wear away the nerves slowly and start to damage the brain.

Ryan started Chemotherapy (Vimblastine) at 4 months old by injection once a week. In March he had another MRI which showed the Chemo was not only didnt work but he had grown another node on the existing Tumor.

I was as devestated as the first time I found out, I practically staggered out of the hospital with Ryan in my arms crying. He now had to have a Gastric Tube inserted into his nose down to his Stomach to have Chemo once a day - administered by ME.

Its now six months down the track and Ryans tumor has only "slightly" shrunk. This could also be due to all the tissue that was taken during the biopsy.  Ryan has been unwell several times and has never had a full round of Chemo yet. He was recently in hospital twice by ambulance with a dangerous viral infection and then finally admitted for four days while he battles high temperatures and other symptons.

I have recently recieved a few emails from overseas friends on the net asking if I would accept donations as is far too expensive to send teddys and books in the mail. I have thought about it the last few weeks and I will reopen his pledge account which is at FUNDABLE.

If he does recieve donations every cent will go towards his quality of life E.g Toys, Books, Videos and Clothing.

Thanks for reading my story, I appreciate it so much.