For the 9 past months the TMK team and so many readers of the blog have been following the progress of little Alex as he undergoes treatment for Acute Lymphoblastic Leukaemia. His early stories are here: this-is-alex/ and alex-an-update-another-3-nights-in-the-slammer/. Now we are thrilled that Alex’s Mum is going to tell the rest of his story. Today she is talking about the past 9 months. Rosie x
Things that I’ve learned that I wish I hadn’t had to.
The only major risk factor for childhood cancer is being a child, mostly it’s just sheer bad luck.
Being told your child has cancer is just the weirdest and most devastating thing. You don’t know how to react; I felt like I was in a play, or on the TV and wondering what my next line was. I was completely lost and totally alone. Because whilst you’d hope there was someone with you supporting you and picking up the pieces, sometimes that just doesn’t work out. We’d been told he was clear and my husband had gone home. And then I had to call him and tell him and I could barely speak the dreadful news.
The day Alex was diagnosed. Receiving treatment and brotherly love.
Treatment for Acute lymphoblastic Leukaemia is at least 2 years. In the UK a boy has 3 years 3 months of treatment, and that’s if it doesn’t come back (relapse). When the doctor said 2 years it was almost as much of a shock as the diagnosis.
The routine treatment for ALL does not include a bone marrow transplant (these days called a stem cell transplant or STC). That is reserved for cases that do not respond to treatment, or relapses. Ten percent of children die whilst being prepared for an STC because the bone marrow must be completely killed off – it’s incredibly toxic treatment which also leaves the child extremely vulnerable to infection.
Chemotherapy is weirdly banal. It’s just another IV drip or injection. Even a stem cell transplant is just another drip.
Alex’s first chemo.
Bloated, exhausted and night sweats at the end of the first month of treatment.
You expect a severe reaction to chemo; I expected a very poorly, vomiting, child I had to tend to all night with sweats and shakes and all sorts. He wasn’t himself but basically he was fine. Of course that’s not always the case and he was certainly tired, pale and fairly miserable, but it wasn’t the extreme reaction I anticipated. In common with many children receiving chemotherapy he found it hard to walk and his legs were weakened, many children have to use a wheelchair for some of their treatment.
Treatments became routine.
Children being treated for cancer are not necessarily bald. In fact, Alex’s hair started falling out after a month and was growing back 3 months later. He didn’t lose his eyelashes or eyebrows though they got a bit sparse.
Remission does not mean cure. In the case of ALL – most children (more than 95%) achieve remission in the first month. Alex had 0% blasts visible at 33 days with a very sensitive test called MRD (Minimal Residual Disease) which can detect up to 1 in 100,000 cells. The thing is, the bone marrow contains billions of cells, and you can’t check every single one which is why they must keep on treating it for years. And you don’t really get the all-clear for FIVE YEARS after treatment ends, in the UK that is 8 years from diagnosis. Even after that, there is a small chance it could relapse – or there could be a secondary cancer.
Cancer treatment can include a lot of steroids which can have a profound affect on appearance (bloating – especially around stomach and face), behaviour (depression, aggression, anger, insomnia) and appetite, which becomes extreme and very particular – often strong-tasting and salty foods are demanded, even in the middle of the night! Alex was obsessed with cold meats and bacon, and gained one quarter of his body weight in 4 weeks. Twice.
Big tummy, bald head.
Thankfully childhood cancer is relatively rare. In the Netherlands, where I live, there are 400 cases a year in a total population of 14 million. The word rare is subjective so to put it into context the chance of a child developing cancer before their 15th birthday is 1 in 500, or 0.2%.
And then, here’s the thing…it doesn’t matter how strong you are, how strong your child is, how hard you fight, how well you cope….it doesn’t matter how much you love and adore your child, what matters is how the little cells react to the treatment that the doctors give them. Some cancers are almost impossible to cure because at a cellular level they simply don’t respond how the doctors hope it will. And sometimes the treatment itself kills, either by toxicity or reducing the body’s ability to fight infection.
Sick in hospital in November 2013
Sadly, we spent most of Christmas Day in hospital, but Santa came!
So how can I help?
Register to be a blood donor. Many cancer patients need blood products, Alex has needed several transfusions.
Register to be a stem cell donor, or if you can’t (there are age limits and other limitations) encourage others to do it.
Support CLIC Sargent, Make a Wish, local hospices, and charities that support research into cancer treatments.
….and how is Alex?
Alex has started school. His hair has grown back, and he’s very much like the boy we’ve not seen since June last year. He’s a bit more tired than usual and generally has a nap once a day. All his treatment is now oral, so his portacath has come out. The portacath is a small ‘box’ under the skin that enables medical staff to give chemotherapy safely and usually allows them to take blood sample – though not in Alex’s case as it didn’t work. In fact, we got to keep it as a souvenir! The last date of treatment is 30 July 2015.
Alex is a source of fascination for his classmates on the first day of school.
Words and images Catherine Drury.