We’ve had a couple of people asking us about what happened so far, so I thought it would be a little easier to document it all here as well, since we understand that some of you might not know us personally and did not know the journey we’ve had battling leukemia.
I think it has been, close to almost 3 and half years now that we’ve been going in and out of the hospital. Hayden was first diagnose with childhood leukemia ALL in 2018 when he was 10 years old. We thought it was dengue at first but turns out to be leukemia.. something none of us could ever imagined.
He underwent approximately 1 year of aggressive chemo as his age is too old to be part of standard risk ALL, and instead classified as high risk leukemia. After suffering for almost 3 years and just as he was about to come out of maintenance, his blood result during one of his routine check ups was not very good. And here we are, back again having to battle leukemia from the start again and even more aggressively.
His hair that was growing out thickly and we even let him grow it out long since he was having online classes during the Covid-19 lockdowns. And now he is balding again. He could eat anything he wanted, and now it is back to limited choices although we have relaxed the rules compared to when he was younger.
And he had to reinsert his catheter. Which is quite a painful too.
And because his chemo treatment has to be highly aggressive, we had to camp in the hospital every other week for an entire week of chemo. The only thing we are thankful and grateful for is being in a private hospital is considerably comfortable, and a lot of the medical costs are covered by insurance.
If you see him day-to-day, he looks like usual. He will play his games, make lame jokes, share his memes and watch his anime. He looks like a healthy teen if you overlook his beanie to cover his head and tubes hanging out of his chest. Honestly, as parents, we can never even begin to understand how he feels as he sits at the hospital feeling sick or when cleaning his own catheter tubes. The only complain I’ve heard (other than his usual gripe about how bad the hospital internet is) is ‘Mom, I think I might need therapy after all this. I probably have PTSD from all this‘.
It has been 5 months now since the relapse, and now it the crucial part of getting that transplant done in order to ensure there will be no more relapse after this. He has been a good sport at the hospital as we share food and jokes, and sometimes he is just plain grumpy and asks when he can go home.