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.