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Heather Peter's (Toby's mum)

written by

Leukaemia Care, Charity

  • Toby and Noah

On the 15th May 2015, our lives were turned upside down. Our son Toby, aged 2, wasn't quite right.  He has been in and out of hospital having been born with a congenital heart defect that was operated on in December 2013, so we thought what else could possibly go wrong? 

Over the span of a few months, Toby’s appetite decreased and he started falling asleep during play or meal times. He had night sweats that would soak the bed linen and his belly grew bigger from an enlarged spleen.  It was the sudden and vast amount of bruising that covered his body that told us he needed to be seen by our GP.  We thought the GP would say it was viral.  Little did we know that just a few hours after being sent to the hospital, they would say in such a soft, calming voice please call your husband because the doctors need to speak to you both. When we were guided to a side room with comfy chairs, water, tissues nicely laid on a table, and a team of professionals following, we knew it was serious. But no one prepared us for the words, "I'm sorry Toby has Blood Cancer, Acute Lymphoblastic Leukaemia.” Life has never been the same.  

It has been the hardest year of our lives… watching our child fight his biggest battle and feeling so helpless. Toby has been a true star through all of his treatments which has included blood transfusions, bone marrow aspirations, steroids, spinal, IV and oral chemo. Plus, insertions of NG feeding tubes, scans, injections, leg cramps and hair falling out.  Toby still smiles after all the pain and hurt. We could not be prouder of him.

Life has changed… it's full of appointments and anxiously awaiting test results. A lot of time is spent at home which provides a safe environment for Toby when he is neutropenic.  A sick bowl is never too far or the comforts of his "batman" room when Toby decides it's time to rest. Toby’s 6-year-old brother’s life has changed. Noah has seen his little brother at his worst.  He has been told that friends can't come to his house when Toby's bloods are poorly. He has been sent to grandparents or friends endless amounts of times: but Noah's love for his brother has never changed. For the second year running Noah and Toby will be participating in Leukaemia CARE’s fun run “Go Gold for Kids” alongside many of their friends to help raise awareness of childhood cancer.

For me...for many years I was a very dedicated teacher, however sadly, I have resigned from my job to dedicate my time and energy to getting my family through this ordeal. Life is slower and not one moment spent together is taken for granted. Life is challenging to say the least, but our love for our kids is endless. The love and support we receive from family and friends acts as our guiding light.

Toby has 2 and a half more years of daily treatment. If anything we have learned the future is very much unknown, but we will make the most of each day. We will continue to accept help from others, seek medical attention even if something just doesn’t seem right. We will never give up the fight.

Toby is our hero and a true inspiration to others on this journey.