This is what leukaemia looks like this week…

September is Childhood Cancer Awareness month, today, Tiffanie Smith writes about her son Alfie’s treatment for leukaemia.

This week Alfie went back to school with a spring in his step and a song on his lips… “Follow the yellow brick road!” to be exact as he has a fondness for Judy Garland of late. He’s been asking for school lots over the summer and popped his uniform on over his PJs on day 1 he was so excited. 

I very much feel as though we are following a yellow brick road with him since 19th February 2020.  The day we were told he had Acute Lymphoid Leukaemia (ALL).  

Following a path of yellow, as children’s cancer support ribbons are gold, towards the day we might get to ring a bell for end of treatment rather than meet a wizard. 

Looking for the brains to manage the daily chemo drugs and juggling the appointments, setting alarms and checking off dates with cancer nurses for weekly bloods and monthly checks, lumbar puncture chemo every 3 months, not to mention home school during lockdowns and poorly times. 

There have been times in the last 18 months when we have felt our hearts break watching our boy struggle with meds and blood transfusions, hair loss twice, NG tubes being fitted for meds and later for milk feeds to regain weight he lost, the muscle wastage and loss of mobility that comes with harsh cancer fighting drugs in the early days.  “If only I had a heart”… as strong as his. 

But we’ve been in awe of the courage of a lion he has shown in the face of fighting this thing. He had a Hickman chest central line fitted to be able to administer drugs or blood products easily and the hospital provided a lion toy from a cancer charity with ‘wiggly lines’ and a book about Ollie the brave lion who is having chemo too. He still has that line and probably will until end of treatment now.  It’s become a bit of a friend he keeps up his shirt and I think he might actually miss it when it goes. 

Since hitting maintenance in September 2020 he has bounced back into life and smiles and laughter and bolting off the ward to visit nurses down the corridor! Everyone knows Alfie at our local Children’s ward!  He still has 7 months of treatment left to go and the yellow brick road is still winding.  Every week we monitor bloods, check school for potential outbreaks of infection he needs to avoid or watch for temperature spikes that might see him admitted for IV antibiotics for a few days. When we are admitted he’s keener to see the nurses and phone the play support team for toy requests than worry about treatment!  

My brave lion taking it all in his stride… think we’re good for courage thanks.   

This month is children’s cancer awareness month.  Many people are ‘going gold’ and supporting children’s cancer charities, raising funds or spreading awareness.  

We were lucky, it had been spotted relatively early, if it hadn’t been for a routine paediatric appointment for our yearly DS review and our paediatrician being on the ball with possible symptoms we may not have known how ill he was until too late. 

They symptoms are: 

  • pallor due to anaemia, 
  • infections
  • increased bleeding resulting in bruising 
  • a rash
  • bone pain 

Our story and our journey with leukaemia is just that, ours.  No two children have the same path with leukaemia.  We have friends who have had a far more difficult journey, some have lost the battle and our heart goes out to those families.  We know others who have been cancer free and well for years following treatment. We have been lucky thus far and hope our end of the yellow brick road date of April 2022 comes without further troubles, certainly no wicked witches or flying monkeys please! 

If you are at all worried about your child’s health please be sure to talk to your paediatrician.  Leukaemia is more common in children with DS compared to those without but for many the outcomes are good and knowing the signs will help. 

There is info about 3 types of leukaemia and Down Syndrome on the DSA website.  If you do find yourself in our shoes there is great support via dedicated leukaemia FB groups and through children’s cancer charities.