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!



  1. incredibly proud of Joel and all of you for your strength and courage.

    We will look forward to seeing you all very soon



  2. So so proud of Joel and all of you! We have been thinking of you all daily. Sending all our love to you all and safe journey home. Looking forward to catching up once you're back and have a week booked nearby so we can spend sometime with you all in July. All our love B,J and A xxx

  3. Wow, Joel is amazing - you must be so proud of him for facing this head-on with so much gusto! So pleased that you are now making your way home and look forward to seeing you guys very soon. Lots of love from Stel, Pete and (growing) bump! xxx

  4. What a brave boy, and equally brave mummy daddy and little brother. Lots of prayers being said for your beautiful family x

  5. Only now catching up on your blog, and I am so happy to see that despite the worry your family have had an incredible time together.

    Your boys are such characters, thank you for letting us into your personal world and sharing some of your journey. I have much admiration for you all :)

    Wishing you all the very best for the future! x

    1. Thank you Toni for following the blog. Your family was ever so kind at Christmas time and we will not forget that x

    2. We loved receiving the forget-me-nots, thank you so much :)
      We are going to find a special place for them! x