Our first day in Florida (7th June 2011)

Today we had an appointment at the Proton Therapy hospital at half 9. We had to have breakfast by 7am (she was due a general aneasthetic at 1pm) which meant waking everyone up at 6! That didn't go down well! UFPTI have recently employed a driver specifically to pick up patients from here and take them to the proton hospital. The driver is called Mitch and is british although he has been here for 26 years! The Ronald McDonald house (RMH) used to drive people but they had too many hospitals to cover and patients were arriving late which messed up the whole proton schedule. Hence deciding to employ their own driver. Millie eventually let Mitch take us but only when we put her car seat in his car!

The place itself is large and airy and so very unhospital like. Everyone is very friendly and we will get to know many of their faces over the next few weeks - staff and patients. Basically everyone waiting is there for a course of proton therapy. One of the main cancers they treat is prostate cancer so there were quite a few older men around. The younger children are aneasthetised but everyone else just has to lie still for half an hour or so. There are 3 proton machines and they were running late today because of bad storms over night, apparently they had to reboot the system! There is a board by reception that lists how late each machine is running, today they were between half an hour and an hour late.

We met Amy, Millie's nurse whilst we are here. She is nice but somehow younger than I expected. And not in a nurses uniform! We also met Dr Danny Indelicato who is treating Millie. He is very young (with 2 kids aged 2 and 3 months) but seems to know his stuff. He took us through the potential side effects of proton therapy ranging from localized hair loss to damage to healthy brian cells which could effect sight, hearing, high level developmental learning (ability to read, do complex math ...) to secondary cancer. All quite scary but very little new to us (Alison took us through it). And to be honest the risks are worth it compared to not having treatment.

Millie's cancer is rare and her tumour was in an unusual place. Normally ependymomas grow at the back of the lower part of the brain making surgery and proton therapy difficult. Where Millie's tumour was makes it easier to treat. I asked about success rates. He has little information to go on so bases it on the information obtained from treating such cancers with normal radiation but in this case the side effects are reduced and the dose can be increased because it can be focused better. The Institute has been up and running since 2006, they have been treating children since 2007, they have done about 19 or 20 ependymomas in children. They have only had one come back so far but they really need to be given 5 years before they believe it has gone. So, all in all, we were given a success rate of 80%. We were also told that Millie will be need to be monitored for life not just because of the cancer returning but because of the effect the tumour and treatment might have on her. Basically, he believes that the earlier they catch any issue from developmental problems to hormone levels the better it can be managed.

Millie was due for her CT scan and simulation at 1pm. It was gone 2pm before they took her in. The poor thing was so hungry and tired. She was in for over an hour (I started getting nervous towards the end). They do a CT scan but they also put her in the right position for treatment and make her a mask to ensure she stays in that position during treatment. She came out and was taken to recovery.  When we got there the nurse had changed her dressing, as I had asked, and Millie had been sleeping for 10 minutes. I was told they like to let them sleep for 20 minutes before allowing the parents to wake them up. If they wake up themselves beforehand then that is fine. Millie woke as soon as she heard my voice! And sat up screaming that she was hungry. I sat her on my lap and she drank a lot of juice then had some chicken salad.  We were then allowed to leave, so less than half an hour after we walked into recovery we were in the car coming back! In Frenchay we had to wait 2 hours.

Millie started to relax once we got back to RMH and she wanted to play in the playroom, which we duly did until tea time. I'll write more about this place at some other point. Most evenings a group of volunteers makes tea for all the families. The community support that RMH gets is incredible. Tonight was fried chicken with mash (of various forms!). Millie wasn't very hungry but she is already getting used to being here and she loves to help us tidy up afterwards. Which everyone thinks is so cute! After tea we watched the fish in the 2 beautiful, large and donated fish tanks being fed then did some painting with a group of volunteers called Art with a Heart. It was then time for bed and she has got used to that already so settled down fairly quickly and passed out. My husband and I then went for a drink in the kitchen, had a chat with another family.

It has been a long day but that is, by the sounds of it, the longest day we will have. We are now just waiting for Dr Danny to work up Millie's treatment plan - he needs to determine what dose he can give, how many beams, at what angle and how many treatments. We have been told Millie starts on the 16th but that is still to be confirmed. She will have between 30 and 33 treatments. Most patients miss one day of treatment for some reason or another so we have been told not to book our flights yet! But we could be flying home at the very end of July but more likely a week later.


I feel bad about not bringing our eldest but it was the right decision. The flight would have been hell, it was hard enough as it was. I looked after Millie and my husband carried all the bags. With our eldest in tow, and extra luggage, it would have been 10 times harder. And even here, although they have play rooms and food provided etc there really is only so much to do and she would be bored within minutes. And she wouldn't like the food provided. Today at the hospital really confirmed my thoughts but it still hurts.