Update on Joseph :: 24.11.05

Joseph had his 3 monthly scan yesterday and I'm dissappointed to say that the results are not good. The ependymoma tumour has grown quicker than normal and is now 4 times the size it was at the end of August. The doctors can't understand how he's still standing as its pushing against his stem. We knew his speech and swallowing had been slightly affected but we we're hoping it was a common cold.

Anyway, Joe's booked in for surgery this Monday. If we didn't operate he would have 3 months left and most of that would be in a sleep state. The most frustrating thing is that we tried real hard with the immunotherapy and the Tarceva and his 170 nutrient/supplement daily tablets he's been on. Just getting through each day for the last 9months has been real tough, the routine is relentless and after all that effort and genuine belief, one scan shatters your illusions… nothing has worked.

So, we're back with the dangers of surgery, possible defecits are Speech, Swallowing, Hemorage, Face Palsy, Left Side Paralysis, Hearing, Walking, & Neurology. In other words, we're praying we get our boy back as he was. Our aim is to get Joe home for Christmas. He's desperate to be in his school christmas play and he's been practising all the songs. That's our dream.

If the surgery goes well, we'd have another 9month window to try something else. I have an alternative therapy lined up in Texas which is a tough regime but would show a response within 2 months if it was going to work.

Or… the hospital could offer more chemo, more radiotherapy, more of the same that may give us a bit more time but at a price. Mine and Jude's thinking is "why take an extra 3months if you're in hospital with no hair and feeling terrible during that time?"

We'll make the decision over the next few days. I'm planning on saving the ressected tumour and getting it tested for all the different drugs to see which ones respond and also to store it for possible future immunotherapy and further testing. Joseph is at the age now where he's starting to ask questions about his "lump" for the first time. The penny is slowly dropping and whilst he's not yet fully aware of the gravity of his situation, he realises he's different to the other children and he's scared about his operation. How do you deal with this???

And finally, Jude & I have been on the floor today and I'm sure the tears will continue for a bit more, but we both feel angry and even more determined to save our little boy than ever.

The doctors have been talking for some time now about Joe's chances being zero and whilst it would seem today that they are right, we are determined to prove them wrong. He can live and we intend to make sure of it, even though the odds are stacked heavily against us. 
As long as he's got a slim chance, we will fight on.

My best wishes

Andy Foote - Joseph's Dad

Ps. Right now at this moment he's fit and happy playing with his sister…. It's all so surreal.