This is Alex. He is 4. He was diagnosed with Acute Lymphoblastic Leukaemia on 26th July.
His Mum is a great friend of Truly Madly Kids and we would all like to share a bit of Alex’s story.
He is currently receiving treatment which will last for 2 years..(23 months to go..) and after responding really well (with both chemo and steroid treatment which gave him extra adorable hamster cheeks and an appetite the like of which has never before been seen in a 4 year old boy) in the first month, Alex now moves to a schedule of daily oral chemo and chemo by drip 4 times a week in hospital. Here is a snapshot of Alex’s everyday meds.
Alex’s Mum (who has a sense of humour which regularly makes me chortle inappropriately in public while checking my facebook) said calmly “I am now one of those people who spends an inexplicable amount of time at the pharmacy and requires complex conversations with the pharmacist. I wondered who they were.” I guess what she meant is none of us ever wanted to be that person. But here it is.
Alex has also found ways to make this work for him as per this recent exchange with his Mum.
Alex: I’m really hot. I feel hot
Me: <worriedly checking forehead> you don’t feel very hot and you look okay
Alex: Yes I’m hot and I need something white to cool me down
Me: would that be ice cream by any chance?
Alex: <nods enthusiastically>
As I ‘ve been following Alex’s diagnosis and treatment I’ve often tried to place my self in his Mum’s shoes. Life is turned upside down when someone you love and care for is diagnosed with an acute illness. Normal and routine becomes quite different. Familiar faces become those of nurses and pharmacists. You become scared of doctors who “want to have a word”. This week as we are all sharing photographs of back to school and missing our little ones who have started school for the first time and worrying about how they will cope with the world without us and holding them tight at 3 20pm , Alex is back to hospital. School is on hold for now.
Alex and bunny after a recent procedure.
If, like me you wish there is something you can do to help then I have good news. There are TWO things you can do. Firstly, you can give blood. ALL patients need blood transfusions. This really helped Alex when he was diagnosed at first. Giving blood won’t help Alex, because he lives in Holland just now. But it will help another child or adult patient. Look into the options you have for giving blood in Scotland or in the rest of the UK. Secondly, you can give to the charity that Alex’s Mum and Dad have chosen for everyone who would like to help. With astonishing generousity they have chosen not an Acute Lymphoblastic Leukaemia programme as they feel this area of research is already well funded and instead have asked that people who wish to give, give to the Pancreatic Cancer Research Fund. It’s a choice I was thrilled with having lost a dear friend to Pancreatic cancer.
Here is a last image of the irrepresible Alex and big brother Milo. Handsome boys 🙂
Information about ALL is available here http://www.nhs.uk/conditions/leukaemia-acute-lymphoblastic/Pages/Introduction.aspx
Rosie x
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