Proton Week 5

10 treatments down! 20 to go…5 weeks in Halfway!

A year ago I would never have pictured my life the way it is now, the hardest part of being a parent is watching your child go through something really awful and you just can’t fix it! We have tried to be strong, be brave and think positive but the worry takes over and you can’t help it, it becomes all you talk about along with sorting the meds and measuring fluid intake and counting the wees that day!

If Louis is having a good day we have a good day and apart from the odd daily meds some days can sometimes seem pretty normal! Our new normal… I have a panic now and again that I will forget the emergency injection that we have to have with us at all times, and when we don’t think it will happen Louis will go into adrenal crisis!

adrenal insufficiency is when the body can’t produce enough cortisol,  a hormone vital to life. In times of stress or illness our bodies would naturally produce 10x the normal amount of cortisol which is vital to the maintenance of blood pressure, heart muscle tone as well as sugar and salt balance.

When injury or illness occurs in someone with adrenal insufficiency an immediate dose of hydrocortisone into the muscle is necessary to avert adrenal crisis, adrenal crisis is life threatening. Delay in this injection can lead to heart failure, disability or death. I can most days put it all to the back of my mind and carry on, but if Louis isn’t having a good day or he’s tired or grouchy which happens more now, or the medication wears off or he has a tummy ache or headache!! Those days my mind goes into overdrive it becomes real and if I let it it would easily consume me! But I can’t let it; we have to stay in control of it not it in control of us!

We do tend to eat sleep and drink this poxy tumour! And the damage its done, When the kids are in bed it’s all we seem to talk about, doctors, stories of other children with the same tumour, medication and growth hormone, you can say it’s wrong you can say it’s not fair to our other children but unless you are actually living this nightmare or have a child with a disability or life threatening illness you won’t realise how much it takes over, We tend not to mention it to the kids, we say Louis your fine,  go play, have fun, and still make him do his school work and tidy his room!! This is to keep things normal! I still tell him off if he’s naughty, I don’t treat him any different as Harli is an age where she understands and that would just be unfair! Obviously it’s different when he’s recovering from surgery or having treatment but generally we’ve been able to keep things the same, I don’t know if me and Darren will ever be the same again, but here’s hoping, here’s hoping a year from now the tumour will be gone and Louis will be having mostly all good days so we can have mostly good days too. I’m amazed how far we’ve come in 5 months but also how 5 months can change a family so much I’ve definitely aged 20 years! We both have!

They say God only gives you what you can handle?? Not sure I agree with that! Be strong enough to survive the storm is one thing but I’m definitely not the same person who went in. A few of my friends made reference to storms and sailing , another one told me to abandon ship and get a motorbike!! Lol … I think she had a good point! If only it was that easy! Lol x

Here is our amazing boy having his treatment, the mask is strapped to the table and pulled so tight it leaves him with what they call waffle face!! Then the beams move about, he’s in that big room on his own having to lay still for 30 mins a day! I can’t even hold his hand! He has to do this not once but 30 times! Plus weekly MRI scans and other oncology and eye appointments and tests, A lot to ask of an 8 year old boy! I feel so many emotions when I look at these pictures still so surreal and so emotional but so proud!! Our little hero X he’s still always got that cheeky smile X

Our bit of happy news this week is Harli painted a picture at the craft table and it was chosen to go onto the gallery wall for 3 months at UF Health and they are having an exhibition night on Tuesday to see the paintings, so proud of her .. X

Sadly our gorgeous dog Roo suffered heart failure this week and had to be put to sleep , we got Roo at 8 weeks old when Louis was just 7 months, we knew she was very poorly with a heart murmur and fluid on her lungs before we left, but just prayed the tablets would help and do the job, the vet said she may have another year or 2 but her heart was failing, unfortunately this was not to be and We are devastated we couldn’t be with her but she had her nanny and aunties taking great care of her but still very hard to deal with so far away. The children have had Roo around since they were tiny so going home to no Roo is going to be so tough, we have to think of all our lovely memories we had and that it wouldn’t be fair to let her suffer, X Hopefully that’s all our bad and sad luck now and our rainbow isn’t far away!

5 weeks and counting xx




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