I’m sure lots of you will remember Alex, the gorgeous little boy with the bad word Acute Lymphoblastic Leukaemia. We wrote about Alex and his adventures earlier this autumn. This is Alex. We thought you would like to know how he is now.
This is Alex yesterday. It’s been a long few months. As Alex’s Mum said recently “When we were first in hospital mum insisted I go for a walk and I was hit by a wall of heat. Today I was hit by cold! Nearly 2 seasons have gone by since Alex became ill and I’ve barely noticed them.”
Today, he and his Mum started their third out of four 4 day stays in hospital while Alex has intensive treatment. The days are long, the treatments unpleasant and the boredom and longing to be home as a family, intense. It feels like doing time in the slammer. Here is the pump that delivers the chemotherapy.
But mostly today I wanted to let you know the good news. Yes, good news. A couple of weeks ago Alex’s Mum shared this update on her facebook page.
“Nearly 4 months ago we had the devastating news that our gorgeous boy had Acute Lymphoblastic Leukaemia. Treatment with prednisone started immediately and less than a day later his blast (Leukaemia cells) count in his blood was down 50%. On day 8 he had 0% blasts in his blood which meant he was a “prednisone good responder”.
One week after that he had a bone marrow test. That showed that he had already gone into remission, and 0 blasts could be seen under a microscope. Around this time we were also told that the “cytogenetics” were favourable. He had a genetic subtype that responds well to treatment. But after all that we were still waiting what the “risk” level of his Leukaemia was – a very sensitive test to show the tiny amounts of Leukaemia that we’re left in his bones (called MRD) was carried out on day 33 of treatment and then again on day 79.
Today we finally got the results. They were negative. It had all gone! It means he is classed as “standard” (or low) risk.
This means the last 18 months of treatment are going to be far easier, and though no walk in the park, our lives will look a lot more like normal. The next 2 months are going to be hard, but the end is in sight.Our beautiful boys make us so proud every day. And we have been so utterly touched by the love and support we have received.
So thank you.
And yes I did hug the doctor.”
I cried endlessly until my nose and eyes became red and raw a bit when I first read this. I *may* well be crying a bit now sharing this news here.
There has been lots of talking and hugging and questions for this family to receive over the past months. A common question has been how his parents knew what was wrong. Of course, they didn’t but his symptoms were extremely worrying and they kept discussing possible diagnoses with the doctors until tests revealed what was happening to Alex. Here is an infogram from Cancer Researh UK with some useful information. Symptoms may vary but this gives some ideas.
I’m sure you’ll join with the TMK team in wishing Alex and his mum a quick stay in hospital and in our joy about the fabulous results they received.
Rosie x
