Week 9-10 the end in sight!!..
Louis has had the most amazing 2 week’s, he was asked to be a mascot for the local soccer team The Armada’s along with Harli they got to have pics and autographs at the end and got to keep their kits. We went to see the Harlem Globe Trotters who were fantastic! He got a basketball shirt number 7 Too Tall!! He read his thank you speech to over 100 people at the graduation lunch, and this week he finally rang Auds Chime bell after his last treatment.
UF Proton Health institute is the most warm and friendly helpful place to have treatment, doctors and staff treat you like friends and always go above and beyond to make sure the children make the best life long memories whilst they are in their care. Kim the child life specialist is truly amazing and worked with Louis to make sure he didn’t need sedation, she pulls all the strings to get tickets to everything and she knows each child’s needs individually and this means everything. The families you meet help you so much, the bond you make is so strong and so real, all within a few weeks because we are all going through the same thing so far from home, we made the best group of friends who I know we will see again X
We have our bandanas ready for the 4th March tomorrow wear it out day, we didn’t realise that by agreeing for the Brain Tumour Charity to publish something we were agreeing for the papers too!! They took their own bits and pics from this blog and put together their own story! We had always said we wouldn’t do the papers and have never given or sold our story to them!! Wasn’t too impressed to see Tumour Boy !! And I hope my children never get to see it! But if it brings awareness then fine.
Our Proton journey is coming to the end and that means the end of this blog! I wrote this blog so people could follow Louis’s progress and journey, after all, our support, and raise awareness but I haven’t found it easy not gonna lie, writing it down means I’m thinking it and sometimes it’s best not to think too much as the anxiety that builds up inside takes over and I want to crumble, then I read it again and again which makes me sad, so even though I’m glad I’ve done it what we now want is for our boy, our family to come home and get back to normal whatever that normal is! He has had some hair loss now which Dr Danny said he will continue to lose for the next few weeks but it will grow back, and anytime between the next 12 weeks Louis will become so tired he may just sleep continuously all day for 3 weeks or more! Everyone’s different but it happens suddenly so something we need to watch for, as long as it’s not joined by headaches and tummy aches all will be well and be just needs to sleep! let’s hope it’s not for too long and he can get back to school and be with his mates which is what he’s looking forward to the most.
We will never be able to thank you guy’s enough, we were able to come here all together for nearly 3 month’s without the financial worry pressure or recovery, we had a significant loss of earning’s all coming here and had to pay for the girl’s flight’s a bigger apartment and bigger car, my kid’s got to make some once in a lifetime memories, feeding the Dolphins and going to Disney, the tickets might have been provided for Disney but we still had to cover hotel and food costs and we would have struggled to do this without everyone’s kind help. Being together at this time as a family was probably what we needed to do more than anything. We have secured the rest of Louis’s fund for whatever the future may be whether that’s help with side effects, immunotherapy, more treatment or advanced endocrine meds, help with eye sight or fertility and you guys have made this possible, this is such a complex pituitary tumour and for me as his mum means everything, it helps me deal with it knowing whatever he needs he can have along his way, in the future if we can we would also like to think about helping other families struggling for MRIs or having to go through proton. Louis is the cutest, kind hearted boy and didn’t deserve any of this but he’s touched so many hearts and we know you are all behind him every step of the way. We pray the side effects are few but we know already that short term memory loss is probably sure to happen, along with his loss of vision in the right eye not improving, some days I can dwell and get so cross! but we will deal with all of it no matter what. He’s here and that’s what matters, he’s our superstar and hopefully will continue to do well no matter what challenges we face.
We would like to end this journey with a clip of photos that we have put together to capture the last 6 months, and for Louis to look back at one day and to show his children. We are so proud of him and how he has coped he has been through things I know I couldn’t cope with but he’s done it with a smile, with his gorgeous brave sisters by his side, they too have been amazing, I wonder what goes on in their little heads too especially Harli she always tries to make a sad or stressful situation better and there’s been times where I couldn’t mentally function and she just took over knowing it was all too much for me, it was her strength and watching the way she coped that pulled me back and I knew I had to cope with this for her sake too.
This consumes us, it’s in your head morning noon and night and it’s not about strength it’s having no choice they are your world, Get up and get on with it, just keep pretending it’s ok, we will never be the same again but being here with other families going through the same thing has made us all see that awful things just happen it’s not because we are bad people or being punished which is really easy to think once you’re in it! It’s been good for the kids to meet other children going through the same thing, and see it’s not happening to them for any particular reason, or because they are bad kids it’s just how it is. The children we’ve met are incredible and makes you actually wonder if this is as rare as they say it is, I find it hard to understand why anyone has to go through this pain let alone children I just don’t get it and never will but none of these children sit and dwell they are strong and positive and laughing all the time, they keep you going.
We thank each and every one of you for being with us along the way. Here’s to a healthy happy future for all, let’s hope we can say bye bye to this blog, bye to Jacksonville and a massive bye to this bloody tumour!! now let’s get back home, start growth hormone and find our new normal!!
Lots of love always, just keep us in your prayers X
The Ackers family xxx