We want to Support James Post Care, Put light at the end of his tunnel and show him how much people care about him and that with Positivity, He will beat this. I would like to let people in on what exactly James has done in the last 5-6 months. I want to highlight what he has suffered, the strains and torments he braved and how he felt whilst doing all this. Whilst I have your attention I hope to throw a light on how amazing the Staff at Tallaght University Hospital, the volunteers at www.giveblood.ie and how brilliant the support from his family and his friends, and all their friends have been over the last while. we will be splitting the Donations between James and HL research and giveblood.ie
after we Detail what it's like to be an HL patient, I want to detail what I will do in the hope that you will sponsor James, HL research and GiveBlood.ie, so please read on...
I had a chat with James to identify what exactly this ordeal was like. I asked because I looked at him and thought, this stuff is supposed to be hard... but James always smiles and has so much grace while he has something inside him trying to kill him (this is a fact). so I wanted to know. I found the following hard to listen to when he said it, Hard to write when I wrote it... but importantly, so fuckin Inspiring
- So James, What is it like?
Before going to the hospital, it's so difficult because you know the stress that's coming, anxiety grabs you and it feels disheartening. I know I'm missing all the homely stuff that I'm used to, not being able to cook the grub I like or play the games I'm into. I know I'm about to be locked in a room for a few days. I don't sleep much, I have nerves because what's coming before going in... so I'm always pretty tired before getting to the hospital.
His BPM 90 (a resting BPM for someone fit and in health averages at 70BPM)
before he goes in, he goes to haematology to take blood (5 vile's, a bottle of coke), they do this to make sure he can physically take what's coming. when the results are sufficient they prep and send the chemo up to his ward. He takes anti-sickness medicine due to the ferociousness of the chemo cocktail, blood-thinning injection to stop clots in his heart and brain (the Chemo can cause that), takes tablets to fight other side effects of the chemo. Then, Chemo is hooked up...
day 1 - He gets one-hour chemo, with 25 pills to take over the day, Then a 2-hour stint of another chemo. overnight he is flushed with intravenous fluids, he gets woken up every 2 hours for Vital check, he is tired but can't sleep due to the chemical cocktail that's in him, it makes him shiver and sweat at the same time. the body isn't in no way designed for these chemicals, it is the stuff that kills Cancer, so imagine what it does to Healthy Cells
His BPM 110... things are Winding tight
day 2 - James is woken up if he's asleep (Unlikely) at 7 for another coke can of the blood being drawn from him. more vitals to make sure he is in a condition for chemo. He gets another 1 hour... followed by another 2-hour bout of Chemo, Just like he did the day before and then takes on the HEAVY CHEMO bout for 24 hours. It's very hard to move around with constant drip in your arm and pain from the chemicals... one night when I was there with him, I saw the ordeal it was just to get to the toilet. the following happens, but note much much more is happening to him in his head, there is puking, the throat swells up and cant swallow the stomach turns into knots, body curls up, and at this point, he is at about 36 hours without food... only sips of water...
His at 120-130 BPM (FOR 24 FUCKIN hours). this is an awful Fight he is in
day 3 - Wakes up on the previous day's drip, if he manages any sleep. They take off the drip around 2 PM to shower, he hasn't been able to clean (wouldn't have the energy to do it either). He gets a break for about an hour, then takes another round of the 2-hour chemo. Then he takes 3 intravenous pushes to clear the line, he takes medicine to protect his liver (Mezna) and makes him burn up and feel sick, he takes tablets to protect his organs (about 25 in each day as mentioned )
His BPM is above 140 now. Imagine having to run for 3 days constant... literally running for your Life
Whilst that's a high number, note that he is above 100 BPM for about 3-3.5 days
When his body has regulated after therapy, he needs examination to leave, then he gets blood... THIS IS IMPORTANT! one day his haemoglobin was about 7 ish, it should be 14. The Low Haemo count means he does be tired and sluggish, picking up a cup makes him feel like he can't breathe and faint, his eyes want to close and he has no focus, meaning walking is not a great idea
THIS IS SO IMPORTANT! He gets Blood transfusions (from donators all around Ireland) when you get the blood (2 bags normally about 500ml, 2 coke bottles ). the low Haemo puts him asleep... the blood flows in whilst asleep, with the fresh blood he literally becomes human again, he can laugh and joke, even play his Playstation. the staff in the Hospital even have to come in to tell us to shut the Laughter up :) ... That's James for you, in the trenches taking Grenades, And Laughing!
When in the thick of it James lost all his hair... which is hard for any Kid growing up and finding his way. His eyebrows went, eyelashes and his beard faded away... legs and arm hair disappeared. his muscles mass deteriorated due to the chemo cocktail. Muscles regress to the level of an old man due to the chemicals eating away at him. Food never tastes right, when he cant eat. During all this you can imagine what a teenager thinks, he was depressed because he thought his life was over... literally... at one point he thought and felt "the worst". If not for the people closest to him, he felt like giving up. But he didn't, because as soon as he thought that he also thought... "Get Fucked" I'm pushing this home.
The precautions taken to do all this, should never be taken by a child, he had to freeze sperm in case he couldn't have kids after this treatment, he had to have bone marrow pulled from the base of his spine (GCSF, look it up). this is one of the most torturous procedures in medicine, James has done it about 4-5 times so far. this is because his Immuno is compromised. I've probably written so much about how amazing he is, maybe I've bored you, I don't really care cause these words are true, and done it all the while during one of the worlds most dangerous pandemic. Not being able to go anywhere because he couldn't, He couldn't see his friends and family, for the most part... Only Myself and his Amazing Mother were allowed to go up to see him
My son is more than a Hero or a Warrior, like any other child who faced this unendurable disease! they shouldn't be exposed to this. Each cycle is ( 4 days with 2 weeks of break from chemo on pills and isolation )he did this 6 times in total.... 6 Times!!!!
I want to reward James with the option of maybe buying a car to get to college, or getting to go to somewhere in the world that he's been dreaming of. I want him to have a huge light at the end of a very dark tunnel, and to walk away with the knowledge that his best years are ahead.
So, I will split whatever is donated, half to James and Half to the Charities mentioned above.
To Earn that and Raise Awareness for the Kids in the world battling chemo, I will do the following. there is an Activity I cultivated. its a 5km walk, 10km run and 20km Cycle. this would constitute about 4-5 hours of having my BPM's above 120. I'll add 5km more to it (roughly marathon distance). In a small way, this will highlight the fact James's body never rests. He never gets to sleep either, so, I'll run at night from Midnight to the early hours. He doesn't eat while on Chemo, so I won't eat for 12 hours before the activity and 12 hours after. I'll show My fit bit readouts after. ill also report what I felt likeif anyone is interested. I want to mimic in a much smaller way, what it must be like to suffer what James goes through daily.
Thanks for reading this, and thanks for your support.
#FullPelt #ForJames #ILoveYouSON
- Rita Brady
- Nicola Casserly
- Edel Perrott
- Lucy Paterson
- stacey connolly
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more