Time off for treatment planning

The rest of the week we had no further appointments as they put together his treatment plan, and manufactured the cups to direct the beams to the correct places to target his particular tumour location.

We took the opportunity to travel south a couple of hours to Cocoa Beach, where we stayed for a short break by the beach. We could feel ourselves relax as soon as we got there. It had been a hectic previous week. We had all been stressed and tired from the flight and all of the appointments and conversations with the doctors. Joel had been acting horribly last week, but by the end of our time at Cocoa Beach he was back to his cheerful self. I felt like it was the first time I've properly relaxed since he became ill in January 2013. We slept lots and got lots of fresh sea air. We had good sunshine, on par with our summer sun. Wetsuits needed and coats when the wind blew, but enough sun to catch a bit of colour.

Joel's mask

This is the mask that Joel uses to be fixed to the couch during treatment. He also has a beanbag body pillow that is moulded to his back to prevent him from moving out of position. Fortunately he didn't need fiducial markers implanted into his skull so he hasn't needed any procedures done before starting treatment.

Tour of the gantry

On the Sunday we had a tour around the treatment room at the Proton Therapy Institute. The picture below is the room where Joel will have his treatment. It's showing the bed where Joel has to lay still, whilst the big drum rotates around him and panels come out to take X-rays of the position of the proton beams. The video here is Joel's little song about Proton Beam Therapy. He talks about going to Argos to choose toys, but he means Toys 'R' Us - more bribery! Argh! We are not allowed to go into the room with Joel. He is taken down the corridor on his own. He then has to scan his badge, use the restroom, change into comfy pants, then choose a snuggle blanket before getting up onto the couch to start his treatment.

 

 



 

 

 

 

 

The weekend

The weekends are ours to do as we wish, so this is about our first weekend there, just before his eye and neuro cognition test.

On the Saturday we drove down to the beach at St. Augustine. It was really nice here. The vibe was very chilled out. We happened across a little cafe right next to the beach, so we just had to stop. The kids were able to run off down to the sand whilst waiting for our drinks.

Have I mentioned super sized before? I can't remember, but when ordering a coke, I didn't expect one this big!

 

 

We had a really nice day, and are hoping we can continue to have good weekends.

 

 

 



Further baseline check ups

On the Thursday we had our initial appointment at the Nemour's Childrens Hospital, just a routine Oncology clinic check - blood pressure, height, weight, the usual. There was a lovely play room here which the boys enjoyed and the views from the building were pretty awesome.

On Friday we were back at Nemours for Joel to have a baseline hearing examination, and then on the Monday he had his eye exam and then his neurocognitive assessment.

Joel had to have eye drops to dilate his pupils. Unfortunately as he's had this done before, he knew what to expect, and he screamed, and kicked, and made a runner for the door. He was distraught. He wouldn't calm down. He was really upset. In the end, I had to pin him down on the table, holding his arms down, whilst the nurse dropped the liquid into his eyes. He was not impressed. He gained a $1 note and a chocolate bar for his pain. As he's not usually allowed chocolate, it works wonders as a treat.

Turned out though that you shouldn't have your pupils dilated before a nerocognition test. His vision was blurry and he couldn't complete all of the test so we need to return to complete it next week!

The neurocognition test was incredibly boring for Joel. I'm amazed if it shows anything in a 5 year old. I wasn't too impressed with some of his answers! When asked to name as quickly as possible anything beginning with the letter 's', he only managed about 3 things, and then when asked to name as many animals as he could, I think his only answers were 'cat, dog, iguana, elephant and a crocodile', oh and finally he mentioned a 'cow and a pig'. My God! What does that show? What does it mean if your son names an iguana before 'normal' domesticated animals? Would you not expect every farm animal to be mentioned, and then perhaps go onto common zoo animals? Maybe he's already a bit low on his IQ, or maybe he's just a five year old boy who doesn't want to sit there answering, in his opinion, dumb questions?!

First visit to the Proton Therapy Institute

Well, we've been here a week now and it's been quite a busy one. We arrived in the early hours of Monday, moved into our new home on the Tuesday and then on the Wednesday we had our first appoinment at the Proton Therapy Institute. As well as our consultation with Dr. Danny, Joel needed to have his mask made and a CT scan. It was quite an important scan as he needed to prove that he could lie still, otherwise they would decide to use general anaesthesia. This would mean a port or hickman line being put into his chest, and each day being nil by mouth for 6 hours.
I was not allowed to stay whilst the mask was made. Joel was very upset when I left him as he didn't know that he would have to clipped down in his mask for his scan. The play specialist asked me to leave and I stood outside the door listening. It wasn't long before i heard him chatting away happily.
He did well, and so far they are assuming that he will be able to manage it, although his first couple of sessions of treatment will be the deciding factor. Apparently they will give him Benadryl (an antihistamine) to make him a little drowsy.

During our appoinment, Dr. Danny talked about the prognosis and potential long term side effects of the treatment. He said that there is around a 70% chance of cure, where over a 5 year period the tumour may initially enlarge due to swelling, then it should stop growing and gradually reduce in size until it just leaves scar tissue. This was a better prognosis than we had been told in the UK. However, there is the potential for cell damage to his brain stem (this affects breathing, walking, swallowing and other major functions), his hearing and his vision, and a deteoriation in his IQ. We weren't aware until that point that he could potentially become deaf or not be able to walk properly due to the treatment. We were reassured though that the chance of this was small. We did already know about the risk of strokes and secondary brain tumours.
The consultants agreed that we had made the right choice of treatment. They told us that his December MRI was showing further signs of growth. They said that other children with these types of tumours who had been treated with chemotherapy, still ended up needing radiotherapy further down the line.

When there are so many potential side effects, it's good to know you've made the right decision.

Welcome to Jacksonville

 

Finally we were here and after picking up our car from Downtown we just had to get to the beach. We couldn't get into our apartment until later in the day. Unfortuantely we had no sat nav so the journey across this sprawling city was quite crazy - pretty stressful. The cars over here are enormous - we have an automatic 7 seater Chevy people carrier with rear DVD players - I'm not going to want to give this up for my tiny Citroen C3 back home!

The fresh air was just what we needed and we were happy to be on a beach again!