Proton Week 3

This week has been full on! We arrived back from Disney, unpacked, washing and sorting then straight into a full day of tests and appointments at several different hospitals the next day. First was the eye test! Louis was amazing and usually when they dilate the eyes with the drops he freaks out and makes it very difficult but he was a star and coped very well. We were told today Louis needs to wear glasses full time all the time, not just for sport!! I’ve asked about this several times in the UK and have always been advised no not necessary but the difference we have found in America is they try to prevent!!! They don’t wait for it to happen. Which I think is truly wonderful! They go above and beyond and every hospital focuses on the patient experience being priority at all times.

I was a little disappointed at first I won’t lie as it’s just something else!! But Louis was so happy and Harli a little envious!! ( kids love glasses) another accessory! Lol. The glasses are purely for protection of the left eye as if he knocks it or walks into a table etc then it would be like me or you going blind! His right eye will never improve now they also told us. Louis had pictures taken of the backs of his eyes which were fascinating. I will include them below hope they don’t freak anyone out.

We also found out this week that Louis’s hearing has been slightly damaged too, nothing to the extreme of doing anything about it, just got to keep an eye on it and be checked every 3 months, hope the radiation doesn’t affect it further which it shouldn’t, the risks are low, but I am praying this doesn’t get any worse.

After leaving Nemours hospital we had to go straight to proton for Louis to be prepped for proton treatment the next day, they hold a lunch meeting on Wednesdays which we attended first and it was nice to meet other people especially other families from England who we have been in contact with on the Facebook forum, we also got to hear stories from people who had graduated and also people who had come back for check ups and reunions who were once told there was no hope. They had proton now 5 years later they are still fit and well! It was very emotional and I don’t think I can attend each week my nerves won’t take it, I cry at anything but it’s such a lovely place everyone is truly amazing.

Wednesday afternoon we took Louis to Vision Express to choose some glasses!! He looks so cute and it’s actually like he’s always worn them! He loves them. We didn’t get home till just gone 6pm Wednesday night and had been out since 8am that morning! Sometimes days can be long.

Thursday was a crap day! I’ll be honest it was.. Louis was booked in for his first proton treatment at 6.30pm! But we had to go in early to have practice sessions due to his reaction with previous scans and mask making! His treatment was booked in for 5.30pm so spent a lot of the day hanging around proton, unfortunately it was a no go, he just got too scared so they asked us to take him for some dinner and try and calm him down! Then they would retry again at 8.15pm. You can see where this is going can’t you!! He did eat, he had his cortisol and calmed down, so I walked him in feeling hopeful, whilst he was having treatment we spoke to the wonderful Dr Danny who showed us Louis treatment plan and imaging, you can see below the picture of Louis brain and the radiation strengths starting with red as the strongest!! Getting weaker so as to limit further damage to the rest of the brain but still zap the whole area! It’s incredible, unfortunately we then got the call to say Louis was too upset to continue with treatment and they needed to stop.

Louis had tried to cough and couldn’t so thought he was going to stop breathing! They’ve had to cut a little airflow where his mouth is now, but by this time it was 8.30pm and he was just so upset and tired just kept saying he can’t do it, the surgery has knocked his confidence so so much. Being cortisol dependent doesn’t help I’m sure.

We called it a night and agreed we would have some more practice sessions the next day, I also decided we would try stress dosing with the cortisol to see if it made a difference, it was a nightmare!! Nothing in comparison but just long and tiring, and draining especially for girls too. Another delay to treatment! I was beginning to worry that they would have to sedate him daily for the treatment! We had one more shot!

We went in early Friday, I knew once he had done the first couple he would be ok and would get his confidence back.

We got to the Proton centre 9.30am, he had two 30 minute practice sessions in the room in his mask that morning, we went off for lunch and to collect Louis’s glasses at 3ish then straight back for official treatment at 5.30pm. They came and collected him from the lobby and I actually did a little prayer! I felt panicked and wasn’t sure if he would be able to do it. He tried so hard and strutting in with his new glasses think it gave him a little extra confidence. But it was the longest 30 mins ever, but so pleased to finally say he smashed it!!!!! So proud of him. We could have all burst. He has to have 30 sessions in total, 1 down 29 to go. Kim who is like the paediatric key worker took him to toy closet and he chose Lego and gave us 5 vip tickets to Saturdays basketball game!! We were all so excited, so relieved, so happy, I could have burst into tears!! Good day!

At the basketball we had our own suite, my kids were ecstatic!! It was brill and Jacksonville Giants won! Woohoo brilliant night we all loved it ! What a treat.

Harli turns 11 Tuesday but it’s bank holiday here today so as we are at proton most of Tuesday we decided to celebrate Harli’s birthday today, anyone who knows Harli knows she loves nails and Ice cream puddings! so I took her for her first pedicure! Glad to say she loved it, we then went to the famous Cheesecake Factory for birthday dinner,it was yummy. Lovely way to end the week. X