Strongest treatment out of the way and a new chapter beginning

Fighting fit
Fighting fit

This week was George’s final week of “Delayed Intensification” <fist pumps the air>  I’m breathing a sigh of relief that his treatment should never be as strong as it has been over the past couple of months.  Barry the port will never receive chemotherapy again… I’m sure of it.

Maintenance

We do need to keep Barry (the port) though as George will still be receiving oral chemotherapy for the next three years.  Access is still required for giving him blood transfusions if he needs them, taking blood for testing and giving him fluids/medication if he’s ill or experiencing bad side effects.  We will be going to Alder Hey every fortnight for a blood test followed by clinic the next day (also at Alder Hey!) for an appointment with a doctor to adjust the chemotherapy dose based on his blood test results.

George will still be going to theatre under general anaesthetic for spinal chemo and bone marrow aspirations every 12 weeks for the next three years too… so while this phase seems like nothing compared to the last 6 months, it’s a long slog.  This phase of treatment is to prevent relapse.

Who the hell is Barry?

Just a reminder of who Barry is for those who only joined us more recently.  The lovely nurses at Alder Hey encourage the children to name their line that’s inserted into their chest.  George being George couldn’t choose something cute and friendly sounding… without thinking he just said “he’s called Barry”.  He’d named a Shopkins toy he had “Barry” the day before whilst playing something silly with our friend Nic, he got a lot of laughs so that’s it now.  The nurses say they’re giving Barry a drink or a wash or some medicine.

Fundraising Heroes

Haynesy still in one piece!
Haynesy still in one piece!

This week Damo received a cheque for funds raised by his good friend Haynesy back in Norwich.  Haynesy successfully completed a biathlon 21st May, running 15 miles around Norwich followed by a 50 mile cycle from Trowse to Beccles in Norfolk and back.  We just want to say thank you for thinking of us and well done for completing it in great time! 5 hours 43 mins!

We know you and all of Damien’s friends down there have felt pretty helpless at times so we just wanted to assure you that you have made a difference – starting with Legoland this week!  George (and Damo’s) favourite pastime in a theme park!

We’ve also had many friends taking part in Pretty Muddy Cancer Research events over the past few weeks too, thank you to all of you who ran for George.  I know there have been at least 5 of you with Georgie Roo on your tops, I’m glad I wasn’t there as I’d have been an emotional wreck!  Just want you to know we appreciate it girls, we’re very proud x

Proud of Lady Harriet and friends

Harriet
Harriet

Speaking of being proud, myself and some of the other mums from school are in the process of organising a sponsored hair cut that our daughters have chosen to be a part of.  Harriet and her friends are going to be having at least 7 inches of their hair chopped off in order to send on to The Little Princess Trust.  Their hair will be made into real hair wigs for children who have lost their hair as a side effect of their cancer treatment, like George.

Any funds raised will also go to The Little Princess Trust to help pay to make the wigs.

George being the age he is, and being boy, has not had to suffer the same emotional trauma that young girls go through.  Bearing in mind this on top of everything else! the painful, uncomfortable treatment, the diagnosis and uncertainty – hair loss may seem small in the grand scheme of things, but for young girl (and boys really) it’s like their identity is taken away as well.

Given the amount of brave young ladies we’ve met since George started his treatment, we felt it would be the least we could do.  I think it will also help Harriet feel like she’s a part of something positive too 🙂 she’s so pleased that quite a few of her friends from school are joining her.

What’s next?

This week we have a blood test and a consultant appointment at Alder Hey to tell us what happens from here on in.  Maintenance officially begins on 1st July and we hope to spend the day celebrating with the children.

Graduating from preschool
Graduating from preschool

The little graduate

Tissues at the ready, I cried when Michelle, the photographer that works with Playdays, handed me this photograph.  I cried because of how beautiful it is, how she’d been so kind to have it put on a canvas.  It will always remind me of the fight my little boy was battling when it was taken.  His hair had started to fall out at this point and Michelle came along even took a few special photos of George with his friends too.

George is “graduating” from Playdays next month for another big phase of his life as he transitions into school.  We’ve got his graduation to look forward to, taster days at school and uniform to try on!  I can’t believe how quickly it has come around or that I’ll have THREE school age children by September.

I’m sad that this huge chunk of time has passed with so many hospital trips, treatment and worry when he should have developing like all the other little ones to prepare him for “big school”.

However, it feels right for him to be moving on with all the children he’s established friendships with, for his sanity and mine!  I know I have nothing to fear with his big brother and sister being around, he’s also got 15 friends from Playdays moving up with him who have known him right through all of his.  They accept him for who he is and treat him like everyone else 🙂 We’ll have the parents moving up with us too (thank God!), who have been there to give me a reassuring smile or hug at the Playdays door…plus the parents of children in the rest of the school who I’m lucky enough to call good friends.  We’ll just be sad to not be in the care of the wonderful staff who go that extra mile.

George is probably going to have hundreds of new big brothers and sisters looking out for him come September, we love the school and the teacher he has.  It’s a whole new chapter that he’ll  take in his stride just as well… and if not, we’ll adapt and wing it as we go along.

Lis x

 

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