Thursday, 30 January 2014

Quick thought on the day

'It' s not fair Mummy, you get the easy part and I get the hard part. I don't like doing this.' My dear little boy. You are so wise for your years, outwardly so strong but inside you are such a fragile thing.

Wednesday, 29 January 2014

Side effects or obnoxious 5 year old?!

Joel was so angry with life today. He has been like this a few times now and it makes me so sad. I don't know it it's tiredness, fear or just that he's growing up and learning to be obnoxious and vile! Who knows? Let's hope it won't last and my delightful, sunny boy will return soon!
I've found it hard the last few days seeing him go off for his treatment. I always feel a bit sick as he goes off and then you keep checking your watch, wondering how he's doing and waiting for him to be brought back out.
He's had early morning slots this week, out of the door by 6 am! We were told this morning that he is much better in the morning, more sedate and relaxed! I think we are still adjusting to the routine after a few late mornings last week!
Early morning is good but it does make it hard to find things to entertain the boys. It was really cold today, they were expecting snow but it was just rain. Such bizarre weather here in Jacksonville, it can switch between our summer and winter temperatures in a matter of days.
Joel has lost his appetite a bit. All of a sudden there are so many foods he won't eat. Lucky he's a chunky monkey!

Tuesday, 28 January 2014

Thank-you to all our fundraisers

There is not a huge amount to do in Jacksonville. Don't get me wrong, there are some lovely places to see, but we have almost exhausted things to do with the days. If the weather's good then it's great, but the weekends are really important in terms of just getting out of Jacksonville and doing some fun things. We headed down to Cocoa Beach again on the weekend and stayed at a hotel with an outdoor heated swimming pool.

Every time we pay out for something nice, we are so grateful for everybody back home who so generously donated money for Joel to have some respite from his treatment. These times are so important to Joel. He said last night, 'I'm so lucky that I can have a holiday whilst having my treatment'. The Americans who have travelled here for treatment call it the 'Radiation Vacation'! So thank-you to everyone.

Joel spent most of the weekend in the pool and on the beach, exhausting me with football. We made a sandcastle village to while away the time.


Family Fun Night

The University of Florida Proton Centre is where he is having his treatment. They are fantastic. Once a fortnight they hold a Family Fun Night, where they put on some food and entertainment and invite all the children who are having treatment. Joel hit it off with two other young boys from the UK and they went crazy. The three of them were so energetic and were playing chase and tag. He really loved meeting them. One of them was 4 and the other was 5 so you can imagine they had fun. They both have to have their treatment under general anaesthetic, one of them has a real phobia of the mask. We feel very lucky that our consultant in Bristol, Alison Cameron, was so fantastic. She suggested that with practice Joel would manage to lie still. We travelled up to Bristol a number of times to practice and to make a mask. Out of the other 4 children from the UK that we've met here, not one of them was advised to practice before starting their treatment. I'm not sure that Joel would have managed without general anaesthetic without the work that was put in before we came.

At the Family Fun Night the boys were able to paint and decorate a mug and a tile that would then be fired and taken home. Unfortunately I was chatting to another family whilst the boys were under Martin's supervision, so the end result was a mish mash of colours all smeared together as he left them to it!

The treatment continues

So, Joel is now 6 treatments in with 24 left to go! He is being very good about it, he doesn't like having it done, but he goes without too much complaining. It's normally comments like 'I'm scared' or 'I don't think I can do it this morning' which makes me really feel for him, but he has an audiobook that lasts the length of his treatment so that helps. He chooses to listen to that one story over and over, 'The White Cat' read by Emma Thompson - he loves her voice! After wearing his mask, you can see the imprint on his face. Awful picture, but if you look carefully you can just see the 'honeycomb' print on his forehead.

He's been feeling a little nauseous but it's not affecting him too bad at the moment. One of the other boys has been sick since day 2 so hopefully Joel won't be affected that bad. He's been prescribed his anti nausea meds just in case. He had his treatment at 6.30 am this morning and almost vomited after that but I think that was tiredness too.  I'm now equipped with a bucket in the car! Don't want to be caught out, especially when it's a big posh chrysler!

Thursday, 23 January 2014

First couple of treatment sessions

He's done it!

Tuesday was his first session, he needed to be on the couch for 40 minutes. It was his first experience of the couch moving and the drum rotating with the noises that came with it, and machines that move close to his head. He was dosed up with Benadryl to make him sleepy, and it worked as he fell asleep during his treatment! Apparently he woke up rather startled with 5 minutes left to go, so Kim the play specialist needed to count down for him, so he must have been struggling a bit. As I don't get to watch him I'll never know how easy or hard it was for him.

He also lost his first tooth today, so it was a big moment for us all. Our little boy growing up. The tooth fairy even managed to find her way all the way over to America.

The following day, again dosed up, he managed his session of 30 minutes this time. We were so proud of him. We'd been told that the first two sessions were going to be the deciding factors for whether he'd do it without the general anaesthetic. His session was an early one, so he didn't fall asleep this time, which makes me all the more impressed with him.

He got a trip to Toys 'R' Us that afternoon - I think that is what got him through those first couple of days. He was so excited - he'd never been into a store like this before!

Reality hits

Honeymoon over and it's time for Joel's treatment to start. I could feel the stress start building up as we drove back to Jacksonville. I was just most worried about the whole general anaesthetic thing. Joel had practised lying still every day in Cocoa Beach, so he was as ready as he was going to be.

We were talked through Joel's treatment plan, and shown images of which areas of his brain would be affected by the radiation.

The green area shows maximum radiation. Fortunately the risk to his vision and his hearing is relatively low. His pituitary gland should be not be greatly affected however his hypothalamus will suffer exposure and as this works with the pituitary gland he may still need hormone treatment when he gets older. As I understand it, damage to healthy cells in the brain stem may result in the same symptoms as a brain stem injury.

Kennedy Space Centre

Whilst at Cocoa Beach we spent a day at the Kennedy Space Centre.

Joel had an amazing day. He watched a 3D movie about astronauts in space, he touched moon rock, he saw a whole range of rockets and the space shuttle Atlantis. He was in awe, though a few days later, during a thoughtful moment, he did say 'Mummy, I don't want you to go up into space!' Fortunately I have no desire to do this!

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.



Thursday, 16 January 2014

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.

Tuesday, 14 January 2014

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.

Sunday, 12 January 2014

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!

The flight

Waiting to check in at Heathrow, struggling with too many bags, but thankful that my mum had persuaded me to take the buggy! As usual, flying long haul, the seats were too cramped and the staff not too attentive. I was tired and pretty stressed by this point. Turned out I should have ordered kids meals, despite checking on the website beforehand. We were sat at the back so being the last ones to be served, we had a choice of Thai red curry or Thai red curry - mmm, perfect for the kids?! Thomas then kicked the table and knocked all of his food on the floor. Not a good start, a few tears shed, by me not Thomas. Finally the boys fell asleep - not so much luck for myself and Martin. 

The flight was delayed as somebody decided they were too ill to fly and so they were off loaded but their bags needed to be found. Add on a strong headwind and by the time we got to Atlanta we were about 2 hours delayed. We had a connection to catch in an hour. Were we going to make it? We didn't realise that we would have to go through immigration in Atlanta and claim our baggage and re-check it in to Jacksonville. We knew time was ticking, so the immigration queue seemed never ending. The kids were exhausted, we were exhausted. It was the equivalent of 1am British time. We ran all the way to our terminal and fortunately due to the freezing temperatures in Atlanta, the flight was also delayed. When priority boarding was called, I was straight there asking if we could get on the plane.

The crew were so lovely. They gave us snacks which later we found out actually would have cost us a fair amount of money. It was a really nice gesture. The crew were quite taken by the boys.

We were very happy when we arrived at our hotel. The room was super sized, as you'd expect from America, but the weather was unusually cold. I could have strangled Joel when he would not go to sleep. He finally dropped off at 2.45am American time (5 hours behind you guys), then was awake by 6am. God, was I tired.

Thursday, 9 January 2014

Our journey


Our journey started on Sunday 5th January, when we got the train from Redruth to Heathrow. The storm was due to hit and the train company was advising travel on the Saturday instead. We decided to risk the Sunday as there was no way we were going to be ready on the Saturday.
Saturday morning was spent packing and then we had a steady stream of visitors throughout the afternoon.

Fortunately the train was not affected by the predicted storm so we got to our hotel that night without mishap. We even managed to get a swim in before trying to settle the kids to sleep, ready for their big adventure the following day.


We have received so much support from family, friends and the local community. It has been incredible and we would like to say a huge thank-you to everybody who has helped us with our fundraising. We have been astounded by the generosity of people, particularly where we receive donations from complete strangers, or large donations from people that we only know in passing. There are people who's support has been so important that they have become really special friends, and that means so much. Our local community has been amazing and we feel very priviliged to live amongst such wonderful people, so thank-you to everyone.

Joel looking awesome in his 'Hulk' outfit - a gift generously given to him.

Some special friends for Joel and Thomas

Just before we left home for America, Joel and Thomas received a special parcel. Two bears, one now called 'Dr. Bear, and the other 'Scrubs' had arrived to look afer Joel!

Dr. Bear was armed with his medical kit, to which we've added a few extras - some numbing cream, plasters and canula butterflys so that Joel can keep practising. Hopefully this will help him cope with the blood tests and canulas.

Wednesday, 1 January 2014

Back to it...

Yeah! He's finally done it again, but I'm now £20 worse off! The Christmas break has caused havoc with Joel's practising. He's got out of the habit of doing it, and so we've gone from the week before Christmas where he was clipped down in Bristol for 29 minutes, to him screaming at me, not wanting to even put the mask on. We got back to it at the start of this week. Sunday, I was determined that he would try again, but he was so distraught, he didn't want to do it. I could feel myself getting cross with him, as he has to do this, but when he cries like that, you feel bad. I had to take a moment, to tell myself to calm down. I said to him that we'd try to lie still but without the mask, and he managed it, he lay still for 32 minutes. No mask, but hey, 32 minutes, with no DVD just peace music. Ah, we were so happy x really proud of him!

Monday then, I just needed to get the mask back on him. He didn't want it. We had tears. We negotiated, he said one minute, I said ten, he said two minutes, I said five! We tried out the counting beads today to see if they would help. It's a string of ten beads they used at school when learning to count, our friend suggested them, and it seems to work. Every 30 seconds he pushes a bead along - we tried every minute but it was too long for him. He kept doing this, and restarting when he'd used them all, and he managed not 5 minutes, but 12, so again we were happy. Things were looking better.

New Years Eve and somehow we didn't manage to practise. There's never a good time. He never wants to do it. It needs to be a time when Thomas is occupied or taken elsewhere, as his little brother, being 3, is a bit of a live wire! Well, today it just wasn't going to happen.

By the time we got to New Years Day I was feeling like a bad mother for missing a practise yesterday. We couldn't get ourselves into gear today - a bit of a pyjama day, despite no ill effects from the night before - we were all asleep by 10pm, too tired for New Year celebrations! Well, it got to bed time and we still hadn't done it. Here's when the bribery started...he's mad about Ironman, and is determined to get an Ironman Lego set that he'd seen in the shop the other day. He got Ironman for Christmas, but this not only has Ironman in a red outfit, but there's another one in a silver outfit too, and he's just got to have it! I thought it was worth half an hour of mask wearing, seen as he hadn't been doing too great with his timings. I thought it would take him until the end of the week to earn it, and then it would be a toy for him to play with on the train. He agreed to earn it over a couple of days. Well, he got to the agreed time limit of 13 minutes, and he wouldn't stop. I kept saying it was too late, he needed to sleep now, but he was determined to earn his Ironman! He kept going, telling me he wanted to do half an hour, and dear of him, he did it. I tricked him and stretched him to 32 minutes (!) so we were both really proud. He kept saying to himself 'I can do this, I can do this'. A mature mantra for a 5 year old. So, I'm now £20 worse off and know I will be sent to the shops at the crack of dawn, but his confidence with it seems to have come back, so heck, who cares, it's worth it.