Support Lewis' stem cell transplant journey

Lewis Graham will be five this June and has been battling for his health for more than half of his life. In June of 2023, Lewis was diagnosed with Hodgkin’s lymphoma (HL), two months later he was diagnosed with Activated PI3K Delta Syndrome (APDS). Lewis has already completed successful chemotherapy for Hodgkin’s Lymphoma. We created this page to allow friends to support him and his family on the next leg of their journey as he completes stem cell transplantation this April at SickKids hospital. Donations will help offset costs and supplement lost income during this time.

At 2 years old Lewis developed a lump on his neck, initially brushed off as active lymph nodes from fighting off persistent daycare viruses. When he was three the lump grew significantly and kept getting bigger. In the Winter of 2023, Lewis went from family doctor to pediatrician, to Brantford General Hospital and onto McMaster Children’s Hospital Oncology team. On June 5th, 2023, he was diagnosed with Hodgkin’s lymphoma (HL). Our hearts broke.

Last summer Lewis went through four rounds of chemotherapy at McMaster Children’s Hospital, his final round ending in late September 2023. HL is relatively rare for children as young as Lewis, and in August of 2023, we received another diagnosis from immunology that explained the HL: Lewis has a rare primary immune disease called Activated PI3K Delta Syndrome (APDS). This affects 1-2 people per million worldwide and is caused by a genetic variant vital to the development and function of immune cells in the body.

APDS symptoms are varied making it hard to diagnose, but can include frequent and severe infections of the ears, sinuses, and upper and lower respiratory tracts, chronic cough, inability to fight viruses like Epstein Barr Virus (EBV) enlarged lymph nodes and lymphoma. All are symptoms that Lewis has struggled with.

In December 2023 it was determined that because of Lewis’ APDS, he would experience continuous lymphoma relapses throughout his life. After discussion with specialist teams at MacMaster, Sick Kids, and UCLA, it was determined that the best solution was to give him a whole new immune system through a stem cell transplant. Doing this now, while he is young, strong, healthy, and in remission is the best time to take on this challenge.

An anonymous person with a big heart will be Lewis’ stem cell donor, and the process will begin on April 18th. Lewis, Marigold, Frances and Sean will be in Toronto for approximately 3 months total while he undergoes the stem cell transplant. Lewis and Frances will be at SickKids and Marigold and Sean will be at Ronald McDonald House (RMHC) for six weeks. After the transplant, the whole family will stay at RMHC for another six weeks before returning home to Paris, Ontario. Uprooting a family of four is no small task, but it is vital for everyone’s well-being that they stay close and tackle this together.

There will be another three months of recovery for Lewis at home this summer to get his strength and energy back, the estimate is that it will be a year before full recovery. The goal and hope is that at the end of this long journey, Lewis will have a whole new immune system and be able to live a normal, happy, healthy life.

This has been a long road, and one no parent imagines. Frances has been unable to work since early 2023, and we want her to be able to focus on Lewis’ recovery without the added anxiety of this financial burden.

The kindness, love and care of this community means the world to Lewis and his family. We are so grateful for the outpouring of love and support. Let’s help get them to the other side of this disease.