Saturday, 12 July 2014

Self Reflection

I can't believe that I haven't posted since May. For me, a lot has happened so I guess my focus has been elsewhere. I am finally back at work. I went back in May once I had got the scan out of the way. I didn't know how I was going to get back. I was spending many days in tears and a lot of effort was needed on my part to get me back to a better place. I became a little obsessed with a healthy diet and yoga initially, but I think the counselling I've been having has probably helped the most. Reflection. Questioning exactly what it is I'm scared of. I was trying to carry everyone when actually what I needed to focus on was me. I wasn't voicing what I needed. But I did know that inside, I felt like I had an elastic band that was twisted so much that at any moment it would snap.



This helped me to cope with the mixed emotions I felt when people, on my return to work, would say 'Oh, you are looking well'. It's amazing what a face can hide.

What I did know, was that I'm not the same as I was. Experiences like this change you, and it's taken, is taking, time to learn who I am now.



Wednesday, 7 May 2014

MRI done and dusted...for now!

He did it! He managed the MRI without an anaesthetic, and didn't go crazy about the canula. Our hard work paid off! I should never have doubted him. Though without the preparations it'd be a different story.

The canula was going to be the biggy for him, and he hated even the look of the magic cream, so I was a little cunning. Over a number of days before his scan date, I'd go into his school at lunchtime and put the cream and dressings on him. I'd do it after he'd eaten but before play time started - that way he was desperate to play and any fuss that he made just delayed his playtime. Once the cream was on, he had playtime to distract him from the discomfort of the dressings. It worked a treat. He'd come home, amazed that the backs of his hands were numb. He thought it was 'magic' how he could scratch himself and not feel it! I mean this is what I'd been saying all along to him...that's why they call it magic cream! But, I guess sometimes you just can't trust your mum, you have to find out for yourself! So, after a couple of times he trusted that yes, indeed, the magic cream did work.

On the big day then, he let me put cream in four different places, insides of both arms and backs of both hands. Good advice from the play team - put it in every possible place. His veins are pretty difficult to see, so the night before I gave him a hot bath and then put ink dots where I could see his veins, as I was scared that I'd put the cream in the wrong place! When I applied the cream that day I was shaking as I was so nervous. It felt like such a responsibility. It will be easier next time I'm sure.

It was worth putting that much cream on as his hands were useless and one arm wouldn't keep the canula in, it kept slipping back out, so they had to do it again on the other arm. He had a lovely bruise the next day.

I secretly dosed him up with some Benadryl mixed in with milkshake, a trick I learnt from the team in America. If it's a one off he doesn't notice! This makes him drowsy. It worked a treat as once he was in the scanner and had got over his initial panic and had a cry, he fell asleep. Awesome! It helped too that he was absolutely exhausted. He also stayed asleep whilst they injected the contrast dye through his wiggly. I don't think he would have liked that.

I stayed with him during the scan and was able to hold his hand throughout. He had 'Flop the dog' his Proton buddy, and his snuggle blanket to keep him safe. His other 'Doggy' had to stay in the locker as he has metal inside him!


 Back upstairs to have the canula removed and job done. I won't say it was easy, but he endured it. He was happy once he received the Skylander Giants character that he was promised. It made it all worthwhile for him!

I think it was an amazing achievement on his part, and a huge relief for me.

Sunday, 20 April 2014

A year has almost passed.

On Friday the 25th April it will be a whole year since Joel's initial CT scan at Treliske, when we found out that he had severe obstructive hydrocephalus with a mass legion, likely to be a brain tumour. I remember that day well. We had arrived at Treliske with no appointment letter, just a telephone message about where to go. When we arrived there, they were not expecting us - turned out we should have been at the hospital in Penzance. However, we were found a bed and waited for an unscheduled slot for a CT scan. Earlier in the week when we saw the paediatrician we had been insistent that Joel needed an MRI scan, however this didn't happen.

I remember how I attended the hospital on my own. I didn't know how long we'd have to wait and Martin needed to be at work. I don't think he really accepted at the time what might have been wrong with Joel. I thought he had a brain tumour but we didn't talk about it. Martin just knew that Joel wasn't right.

Joel's school performance had been declining rapidly since the December. He would stare into space, not hearing when you spoke to him. He would jump at loud noises. He would dribble and his food needed to be cut into small pieces. His arms would tremble and he would spill his food and his drinks. He could no longer dress himself. He had become incontinent, in fact he had been for months - though the doctors thought this not unusual. He had a cold that had lasted months. By the end he could hardly walk - he would stumble and fall. He would always wake with a tummy ache and would occasionally vomit - though he had been prone to this since birth, so we hadn't taken great notice of this.

Each time we went to the doctors, Joel would be Joel and he would charm everyone, putting on a show, trying his very best to walk in a straight line when asked, squeezing fingers as hard as he could, touching his nose as the doctor instructed - he passed a lot of the tests, much to my frustration. It took a lot of insistence and evidence to get his case noticed. I took along a video of him tripping as he walked, and a range of school work which showed his skills decline. This was all suggested by the Brain Tumour Trust's 'HeadSmart' campaign.

Martin had called on his way home from work to see if he should be coming to the hospital. I told him to go straight home as the paediatrician had just told me that the scans were so blurred that they were useless, they couldn't see anything from them. We'd have to come back the next day to have a scan with sedation. After putting down the phone the consultant then came back to say that someone else had looked at them.

I remember the nurses taking Joel away to play. I remember desperately not wanting to be told anything without Martin there with me. I asked if I could call Martin, get him to come. The consultant wouldn't wait. He told me that it was likely that Joel had a brain tumour and that he had to be taken to Bristol urgently.

I remember how calm I was. So cold. So unemotional. I remember calmly phoning school to say that I wouldn't be in work for a while.

I remember thinking how the hell was I meant to tell Martin over the phone. He was currently driving home. I phoned my mum instead who was looking after Thomas. Thomas would have to go home with her. I read out a list of what I'd need for Joel and what Thomas would need. My mum is a rock, at least she is on the outside. I can never read what's actually going on under the surface, but she deals with all that is thrown at her. She has a positive answer to everything. She always makes sense. I don't know where I'd be without her.

Martin's world was shattered.

Joel and I were taken up to Bristol by ambulance that night. I persuaded Martin not to follow until the morning. I can't imagine how he endured that night at home on his own.

My neighbour, who is now a close friend, is a nurse at Treliske and I remember her coming to the ward to see us at the end of her shift. She waited with me and Joel and helped us into the ambulance. I won't forget that. It meant so much.

We arrived at Frenchay around 1am. I had spent the entire journey in the ambulance writing in my notepad - working out my cover lessons for work. Seems crazy now when I look back on it all. I've still got that notepad. Adrenalin. It kept me going from that day until his Proton Therapy, when I crashed.
 
Joel was taken into theatre at 9am. Martin didn't manage to get to Bristol before he was put under. That scared me. Not knowing whether Martin would see him alive again.

I remember Mr Edwards, the neurosurgeon sitting down with Martin and I, rapidly talking through the surgery that was necessary to relieve the hydrocephalus. The tumour couldn't be removed but he thought they could get a biopsy. The risks were horrendous and we weren't sure of the outcomes.

I remember us both in tears, sat at a table outside the cafe. We had hours to pass. Hours to contemplate our sons life. It was surreal. For me, I didn't feel like I was actually there.


Joel was in the High Dependency Unit where I slept by his bedside. When I think back, I can still remember how he smelt. Iodine or something similar.

Everynight I still trace the line of his scar and cup his forehead in my hand. Wishing that my hands could heal.


The MRI preparations

Just over a week to go now until Joel has his first MRI scan since his treatment. He has always had a general anaesthetic for his MRI's, but since he now needs to have them every three months for the next three years, I thought he should try to do them without anaesthesia. In the States it is common to train young kids up so that they are able to cope with the scan without sedation. I've been looking at their sites and have picked up some tricks along the way...

I ordered a toddlers play tunnel and Joel has been practising laying still in that to get used to the claustrophobia of the scanner. He's been listening to an awful 30 minute long track of the horrible noise of the scanner, some of which sounds like a woodpecker, a pneumatic drill and a persistent fire alarm. He will be able to listen to an audio CD. He's chosen 'The Further Tales of Peter Rabbit' by Emma Thompson. He listened to 'The White Cat' read by Emma Thompson during his Proton Therapy, but can no longer bear to listen to it!

On Friday we visited the MRI department at Treliske. We took photos from the front door of the Tower Block, down to the basement and the reception and waiting areas, as well as a couple of photos of the staff, before seeing la piece de la resistance - the MRI scanner. I thought that with the photos I can put a little photo book together to remind him of what to expect on the day. So far so good. Fairly confident that he can cope with laying still again - I think the radiotherapy is still in his not so distant memory and he knows the importance of laying still and has the visualisation techniques to stay calm.


Our biggy at the moment is him coping with the canula. Typically he needs to have contrast dye. If he didn't need it then we'd only be dealing with the scanner. He hates canulas - with a passion. I only have to mention them and he's in floods of tears, like hysterical.

I am armed with a number of tubes of magic cream and dressings so he can practise just having the cream on his arm. He's managed to allow me to tape a canula on top of his skin whilst playing doctors with Doctor Bear and Monkey. We squirted water through it for a bit of fun. We are closer than we were, though a lot more conversations are needed.

We discussed it tonight and a little bit of bribery (actually quite a lot) ended with him saying that he would give it a go. He would accept the canula without running off down the corridor, like he had previously said he would do.

It's so hard. Trying to prepare him for what's to come. I don't want to do it. I don't enjoy it. I know though how important it is to get him prepared. It will be such an achievement if he can do his scans without anaesthesia, as over the next few years he would be clocking up quite a number of general anaesthetics, which can't be good for such a young boy.

Sunday, 30 March 2014

Mother's Day

'There is no undertaking more challenging, no responsibility more awesome than that of being a mother' President Gerald R. Ford
 

Ah, Mother's Day! Been having a little browse on Pinterest and just fell in love with some of these sayings, which all seem to ring so true.
 
 
'I won't always cry Mummy,
When you leave the room,
and my supermarket tantrums,
Will end too soon.
I won't always wake, Mummy
For cuddles in the night,
& one day you'll miss,
Having a chocolate face to wipe.
You won't always wake to find my foot,
Is kicking you out of bed,
Or find me sideways on your pillow,
Where you want to lay your head.
You won't always have to carry me in from the car,
Or piggy back me down the road,
When my little legs can't walk that far.
So cherish every cuddle,
Remember them all,
Because one day,Mummy,
I won't be this small.'
 
 
'I never pulled over the car just to look at horses,
I never was willing to give someone else my last bite,
I never planned on handling someone else's boogers,
I never listened to a song 50 times in a row,
I never found rocks in my dryer,
I never had the power to heal a wound with my kiss......
until you.'
 
 
Another saying stood out for me...
'A Mum
is like a
teabag
Only in hot
water
do you realise
how strong she is.'
 
 
Before the boys came along, I could never have imagined how rewarding, yet how hard it is to be a Mum. The last few weeks have been quite up and down for me. When Joel was diagnosed last April I was so strong. I knew there was something wrong with him, and in a way it was almost a relief to be told that yes, there was something seriously wrong, as it meant I didn't have to keep searching for answers, which I had spent months previously doing.
 
After his surgery I had to be strong to get him back up on his feet again, to play it all down when things hurt or when he questioned the scar along his hairline. To protect him when he was playing..always watching.
 
I had to be strong throughout his scans, helping to play down the general anaesthetics. Making fun and games of things which are definately not fun. It's actually really hard to keep pretending that your boy is a super fast racing car driver whilst watching him writhe around as the gas finally takes over and makes him pass out.
 
It's been hard, and throughout it all I know I've been strong. I didn't shed many tears between April and December. But now.. I don't feel so strong. It's hit me, since coming home, just what we've been through. And yes, the tears have started flowing.
 
 
If only I could just breeze through it like my little boy.
 


 Joel's Mother's Day gift to me. Beautiful. He has the best smile in the world.

 

Saturday, 22 March 2014

Joel's mind

Joel seems to have more energy now than he did before Christmas. I don't know how that is. I expect it's purely that he's had a really good rest, and he managed to be more active in America, so he's built up his stamina. Before Christmas he didn't have the energy to go out at play time, he couldn't walk to school, he couldn't do anything after school, and he needed vast amounts of food to give him energy. Last week, he cycled to school twice and walked a couple of times! Amazing! He wants to join a dance club, a gymnastics club and a football club, oh..and a swim club.. he wants to do everything. By the end of the school day though, he's wiped out, and there's no way he could walk home, he can only just make it to the car!

I remember him saying in America, when his treatment had finished, something like 'Well it's good that my treatment is all done, that means I can have a happy healthy life now'. It's interesting how his mind must work to process it all. It was only last week that he said 'Mummy, if I didn't have radiotherapy would I have died?'

I still haven't got rid of this cold virus that Martin and I picked up in the States. My ears in particular are blocked, and I think Joel must be getting it, as not only is he now coughing like me, but I think his ears must be playing up. He said tonight that they were ringing, then yesterday he said that he could hear voices in his ears, and 'was it the bad cells talking?' Funny how his mind works.

He has been so brave, and yet he gets scared over the smallest things. He doesn't want to use the bathroom on his own, he doesn't want to be downstairs on his own. This week he ran out of school with the receptionist to find me, as he realised he hadn't said goodbye properly. He was in hysterics at school when the fire bell went, beside himself ...he doesn't want to be left at his friends party...the list could go on. Funny how he took the treatment all in his stride. My brave soft boy!

Home

Wow, how has two weeks gone since we got home?

Joel has continued to be amazing. We arrived home on the Friday evening and he was desperate to go to school the following day! So, on the Monday he went to school. He woke up desperately keen and excited, but later started to panic saying, 'What if everyone is now better than me?', 'What if I don't know the answers'. He managed the whole week, going in late and coming home early - 'Get me there for morning play time Mummy', 'Pick me up at the end of afternoon play time Mummy'. Sorry Miss Philpott, but I don't think he was too bothered about the lessons, he just wanted to play! By the Friday, Joel had gained 'Star of the Week', and a disco party was held for all of the infants during 'Golden Time' to celebrate his return. A perfect opportunity for a reappearance of 'the Hulk!'


He was ever so proud to have won a football eraser during musical statues. I mean come on, who else was going to beat him when it came to staying still?! Wasn't really a fair game for the others now was it?!

Tuesday, 4 March 2014

Joel's last treatment

'Come on! Where are my clothes? Let's get this day started!' They were the words of Joel at 5.30am this morning. Today was his final treatment session and Joel was excited. 'I get to ring the bell and eat chocolate brownies!' Patients 'graduate' by ringing the chimes to celebrate the end of their treatment and cakes are shared with the other Proton patients and their families.

As I never got to go into the gantry with Joel for his treatment, I asked for some photos to be taken of our brave boy.





I still can't quite believe that it's over. So now we won't know how successful the treatment has been for another 5 years. If Joel is in the 70-80% that the treatment works for then we can expect to see swelling of the tumour between 6-18 months after treatment, then gradual shrinking over a 5 year period. If it doesn't work then we'll have to assess the surgery risks again as the area cannot tolerate further radiation.

In addition to his scans Joel will need regular neuro-cognition testing and hormone level testing as damage to his IQ is likely, and due to the levels of radiation to his hypothalamus he may need growth hormones as he gets older.

Just so long as his smiley, happy, bubbly personality doesn't go then we can face what life throws at us. He is one special boy who captures many many hearts.

We will miss all of our new found friends at Florida Proton, and as all the Americans say to us, 'we will pray for you'. A prayer was said for Joel today. Our new friend Peter prayed for 'healing', whilst Joel repeated the prayer back, reciting 'we pray for Heely's' - the make of skate shoe that Joel has just come across in America and has spent the last few days desperately trying to find! Lord please forgive him!! The mind of a 5 year old, you've gotta love him!


video
 

Our final weekend

The last couple of weeks have been a bit of a blur. Joel has got progressively more tired and irritable, and consequently trying to deal with the arguments between Thomas and Joel has been exhausing! We've all been wiped out with chesty coughs and colds, and Martin ended up with an ear and chest infection. Normal for winter I know but unexpected whilst in Florida! Curse whoever gave it to us!
The coughs and colds have lingered but we had to make the most of our final weekend in Florida so last weekend we headed down to the Ocala National Forest, north of Orlando. It was pretty. We swam in Salt Springs, a natural pool created by three springs where water bubbles up at 72 degrees. Beyond the swimming area was a lake where we were lucky enough to see a few enormous manatees bobbing up for air.
We stayed in a lodge on a campsite overlooking Lake Kerr. A nice change from Orlando hotels. It was beautifully peaceful.

A few nice pictures of cheeky brother Thomas, who was once shy and is no longer. He has really grown whilst we've been away, and is now quite a handful. He's learnt from his older brother!

 
Whilst Joel was too scared to climb the fallen tree, Thomas got right in there.
 
 
The view of Lake Kerr from our BBQ spot - toasted marshmallows whilst the sun set.
 

The best of a whole bunch of 'selfies'! Joel being as crazy as ever.


Joel did a bit more resting this weekend, but Thomas was busy in the play area.


We've had to be careful not to lose sight of Thomas in all of this, so just a cute one for the record. He's such a silly sausage and almost as crazy as Joel.

video

Joel is still the biggest show off though! Always busy dancing.

Wednesday, 19 February 2014

Animal Kingdom

Not quite sure what happened to my videos on the last blog - tried to sort it and have now given up!!

On the Sunday we went to Animal Kingdom. We trecked through Nepal where Martin and I went on an amazing roller coaster up Mount Everest and were attacked by a yeti!

 
We then travelled onto Africa, where we went on a jeep safari, we saw hippos, lions, giraffe, gorillas...




Joel was a wilderness explorer for the day and had to discover lots of clues and find out about many different animals in order to earn stickers. He really enjoyed this, especially as after watching too much 'Barney' he was really wanted to be a forest ranger.
 

Magic Kingdom


 Saturday was our day at Magic Kingdom. We were at the park by 8am after breakfast at the hotel - Mickey shaped waffles! Thomas also chose Fruit Loops - can this really be classed as food? Chemicals in a bowl I think.















We didn't manage to get birthday cake yesterday, so by mid morning it was time for a coffee and cake to celebrate. America has been one long eat-a-thon.


The highlights of the day were watching the street parade and a show about Mickey and his friends making dreams come true. Now, we've never really been into all the Disney characters and we weren't too sure what our Disney experience would be like, but it was actually a very poignant moment and suprisingly emotional as we listened to how everyone has a dream and how Mickey makes them come true. My dream was for Joel.


video
 

Knowing that we were here because of everyone's generosity made the whole weekend even more emotional as we would never have done this as a family if we weren't in this situation.


Joel danced along to the street party, doing his crazy dancing, in his own little world. Look out for him in the grey stripey jumper wiggling his tailfeathers along with Donald duck!Meanwhile Martin and I had all kinds of thoughts just whizzing through our heads. An emotional day, but a good one.

video

 






Monday, 17 February 2014

Disney for my birthday

After our stop at Panera Bread we carried on driving to Orlando. We are lucky that Joel's treatment is at an ungodly hour in the morning, as it meant three days at Disney instead of two. We arrived at the hotel then got the shuttle to Epcot first. We wanted to save Magic Kingdom for a full day on Saturday. Epcot is like a world tour, it has different areas to represent different countries. We wanted to go on the Norwegian Viking Ship ride and kept telling Joel that it was just a gentle boat. He was screaming and in tears saying that he didn't want to do it! He has a phobia of rides and even struggles on a carousel! We asked if it was scary and we were told no, so we persuaded Joel that he was being silly and bribed him to come on with us. It was scary! It was dark and eery and we felt bad for telling him that it would be ok. Later that night before sleeping he told us that he didn't like the rides that go up and down and round and round because he thinks that his tumour is going to fly around inside his head. He doesn't get the idea that it is attached and that it cannot move. It made us sad hearing him say that. We now understand why he doesn't like rides and decided that Disney would be about the shows and not the rides.
We strolled past all the different countries then took a boat to Hollywood. This was better for Joel. He got to see Buzz Lightyear, Stitch and Lightening Mcqueen.



 
Joel enjoyed the 'It's a Bug's Life' play area where everything was oversized making us seem tiny. He also loved the Speedway where both Joel and Thomas got to drive their own Hot Rod. Not a very clear picture but Thomas scared me to death as he swayed me back and forth as we kept hitting the metal guideline! Though actually looking at the picture he probably couldn't see much!


 

The background scenery for film sets was amazing, from a distance it looked like you were actually there!



Joel did really enjoy the shows, and it didn't matter that we weren't focused on the rides. We watched an Indiana Jones stunt show which showed how the stunts are filmed. There was lots of dramatic fighting scenes and a huge boulder ran over Mr Jones before he escaped in a stolen aeroplane! The day ended with a night time laser and fireworks show with Mickey.

 
When we got back to the hotel, the staff had covered my bed with balloons and party banners with a card from the reception. What an amazing day!

My birthday breakfast

Friday the 14th - Valentine's Day - My birthday!

This is the blog I wrote but didn't manage to publish ......

Oh my God I feel so fat! Panera Bread for a birthday breakfast - third time this week - that's not good is it?? Monday to celebrate Joel managing his first MRI scan without anaesthesia. Wednesday because we had time to kill between appointments and today Friday 14th because of my birthday. What has happened to our family's sugar free diet?? Must get back on track. See the enormous stack of boxes filled with sweet treats from Stel and Pete!
 

Friday, 7 February 2014

Reality hit

A little bit of a reality hit this morning. We don't really think too much about Joel's tumour - we go for treatment and then leave straight after. Block it out and carry on. But today, we stayed on a little bit longer as we got chatting to a couple of people we've become friends with. Everyone here has so much to deal with when you listen to their story, you feel quite lucky when you listen, and then it dawns on you, you realise that we too are one of them. We too have our own story.
A 9 year old girl with a tumour in her pituitary gland, 15 hour craniotomy to partially resect it, then here she is having proton after the remaining cells continued to grow. She has a life of hormone therapy ahead of her due to damage to the pituitary gland. Her mum struggles to get the level of meds right to control functions such as thirst and temperature regulation.
A 5 year old boy with a tumour in his brainstem, the area which controls the most basic functions such as breathing.. staying alive. 8 hour surgery to resolve hydrocephalus. Too high a risk to operate on the tumour itself. Chemotherapy not highly effective, so he's here having proton. That's our story. So he's doing well now, but dwell on it, dare to think about the future? What if we're the 30% it doesn't work for? What then? That's why we don't think about it. So forgive us if we post blogs about all the fun things that we are doing, but we are filling our days, blocking out the conversation we don't want to have. Burying some of the conversations we've had and the things we've been told, and holding onto others.

Our Journey..Strength..Courage..Hope


My next blog will be a fun one, I promise.

Wednesday, 5 February 2014

Awesome weekend

We have had the most amazing weekend thanks to everyone who helped raise money for Joel. We spent Saturday at Legoland and Sunday at Seaworld, Orlando.
It was fantastic. I was on the verge of tears by the end of the dolphin show at Seaworld. It meant so much to me just how much Joel enjoyed it. Seeing his little face get so excited. It would just light up. Never would our family have shared such an amazing time together if all of this hadn't happened to Joel. The fundraising that people have done for Joel has made this the best 'radiation vacation' we could ever have dreamt of. The boys have not had a 'holiday' like this before and are unlikely ever to again. It has been a once in a lifetime experience and Disney is yet to come!



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!