Wednesday 26th August

Treatment all as usual. Skin seems to be redder still and I think it's fair to say now this is now due to the radiation rather than the plaster holding his eyes open. We asked to see some pictures of how the proton beams are being aimed at Toby. The best pictures (3D) are only on their computers but we did get to see a 2D image, in his notes. One beam direction is from straight on in front of his eye. The other is from the side, pointing towards the inner corner of his right eye, adjacent to the nose bone. Perhaps unsurprising as this was where the cancer started.

We could clearly see how it completely misses his brain. What was not so good, was the fact they needed to irradiate behind his eye. Something we weren't aware of until now, but will undoubtedly be due to how the cancer spread in the weeks between diagnosis and initial biopsy and the surgery and chemo starting which was 3 weeks later. Not long, but long enough for it to have grown from the size of a pea to the size of a golfball.

They are not concerned about the optic nerve and have been able to reduce the dose around the lacrimal gland, which is responsible for tear production. Sounds relatively unimportant in the scheme of things, but a dry eye can be so painful, that removal of the eye is often needed. Fingers crossed is all we can do on this one.

Seeing all of this reminded me about how long term his follow up will be. Whether it will involve an occasional visit out here again or just copies of his check ups at QMC I don't know, but the contact will continue for years, of that I'm sure.

In the afternoon, all 4 of us went for a bike ride. Sam now rides on a 'tag along' bike and is increasingly heavy for Kyle to pull along. Toby is in a seat on the back of my bike and heavy enough, but Sam now rides on a 'tag along' attachment to Kyle's bike. Let's just say an hour out on the bike left him 800 calories lighter!