Can we tell you about our remarkable son, Callum?

Callum was diagnosed with acute lymphoblastic leukaemia in May 2017, when he was just 16. After the initial 9 months of intense chemotherapy, he went onto maintenance chemotherapy. But in January 2020 we had the devastating news he had relapsed in his central nervous system (in the fluid surrounding his brain).

This led to Callum having a stem cell transplant in June 2020. All went smoothly, Callum seemed to be recovering well. But he’s a very astute young man, especially where changes in his health are concerned. And again, we found out on New Year’s Eve 2020 that he had relapsed in the same place for a second time.

This time, CAR T cell therapy is the next course of treatment, but Callum didn’t fit the criteria to have it done on the NHS, but his haematology team at Birmingham managed to enrol him on a clinical trial at University College London Hospital, that would enable him to have CAR T cell therapy.

After 6 long months of trips back and forth to London and Birmingham, he was ready to have his transplant on 16th June.

Callum recovered remarkably well and we had a lovely peaceful Christmas and was looking forward to a much healthier 2022.

Sadly, three weeks ago, he became quite poorly, we all thought it was some type of virus, his haemo team included, as his blood counts were so good.

But a CT scan, MRI and lumbar puncture confirmed our worst fears and last Monday, the 7th of March, we were told he had relapsed for a third time and there is a patch of leukaemia cells on his optic nerve (chiasm).

This time, there is no pre planned next step treatment, both teams at QEHB and UCLH agree that the best plan is for Callum to have regular triple intrathecals (chemotherapy lumbar punctures) and pulses of steroids to try and clear the leukaemia cells. It’s now manageable, not curable. So we don’t know what the future holds for us.

Callum’s team have told him to “make plans, do stuff”. Covid has stopped him doing anything for the past two years, it’s time to get out there and have some fun and live life to the full!!

This is where we are asking for your help. Cancer is very expensive and it doesn’t care how much money you have, or don’t have. We don’t want to have to say no to anything Callum now wants to do, but finances are extremely tight, and fuel prices are going to squeeze us to the limit with umpteen hospital visits and appointments that are going to be inevitable now. He would love to travel as much as possible now, holidays have been impossible with covid loitering.

Our boy is one of the most courageous, strong, determined people you could ever wish to meet, and he deserves to have the world as his oyster now, after 5 years of hell.

Please donate absolutely anything you can, every penny will be appreciated much more than you will ever know.

Thankyou so much.

Rachel, Allan, Callum and Ethan Lord