In October 2018 my beautiful Grandson Alfie became ill. What we thought was an ear and throat virus turned into the beginning of a horrendous scary 6 months and is still ongoing.
After being rushed to Addenbrokes hospital he was diagnosed with Acute Myeloid Leukemia. This type of Leukemia is rare in children as it usually affects the over 60s . We were told he would be in hospital for 6 months. He was only 10 months old.
My heart was broken. Watching my daughter and future son in law suffering was the hardest thing I’ve ever seen. Ollie had only just finished treatment for Hodgkin’s Lymphoma 4 days before Alfie was admitted. So two people out of a little family of three had been struck with this vile disease.
We were all sad, confused and angry. And so began the treatment….four rounds of chemotherapy over six months. Watching the different chemos entering his tiny body broke me every time. So many medicines to stop infections and to stop him being sick. So much for a baby, but every day he made us smile with his determination to keep going and enjoy life.
Each round, when he was neutropenic he was at danger of catching any illnesses so we had to be extra careful. He ended up in a barrier room each round, which he obviously didn’t understand, why he couldn’t leave the room for up to two weeks at a time. Poor Saffron didn’t see daylight for two weeks during one round.
The emotional roller coaster on C2 ward is hard. You see families coming in hanging onto hope. Then later seeing them broken and trying to absorb all the information but then the next minute you are celebrating with another family who have received good news. I have never cried on or hugged so many strangers in my whole life. You draw strength from each other and that is the only way to get through it.
Each round also meant heart scans and bone marrow aspirations to see what level the disease was at. Waiting for those results each time was nerve racking.
The position we are in now is that treatment has finished but we have had worrying blood results from his weekly tests in that they have seen some immature cells and they are not sure what they are yet. Alfie is now having yet another bone aspiration done so they can see what is happening inside his little body.
The scientists at Bristol have also designed him his own personal test to see if they can give us any information on what is likely to happen in the future. This limbo feeling is so hard. It is a constant black cloud above our heads threatening to burst at any time and bring us crashing down again.
There is no stem cell match for Alfie at the present time. So please can I ask anyone who is able to sign up to be a potential donor.
A person’s best match after a sibling is a complete stranger so please, please, please can I ask you to help. We have met many children on C2 who have needed stem cell transplants, so please help others out there too.
Weʼre raising £150,000 to help pay for CAR T cell therapy for Alfie: Just Giving link
Words by Karen Miller