In 125 days, this is what Talen has had to endure.. what has become his life:

- 11 x seperate chemotherapy and immunotherapy drugs

- Chemo directly into his spine

- Vascath surgery

-biopsy's and bone marrow collection

- GCSF injections

- Stem cell collection for possible reintegration into his body

- 6 x blood transfusions (including an almost anaphylactic reaction to platelets)

- 3 x PET scans

- Multiple CT scans

And tomorrow… another biopsy.

And now we have been told the words no parent ever wants to hear….Talen is considered refractory Burkitt lymphoma…

After his last round of chemo, his PET scan showed regeneration and growth of the lymphoma. It hasn’t responded the way we we hoped it would.

There have been so many layers to this fight... Early on, he had a reaction to one of the chemo drugs. Then, he had a severe reaction to platelets during a transfusion that was terrifying to witness. Watching your child react like that knowing their body is already fighting so hard to survive… is something I hope I don’t have to witness again.

As for prognosis… we wish we knew. There isn’t a clear roadmap from here. The next treatment option we’re pursuing has about a 40–50% response rate. That’s what we’re holding onto right now… The hope that he will be in that percentage. Because if he doesn’t respond, we will be left with limited options and may need to start looking overseas for treatment.

The current plan is to try and qualify for a clinical trial using Glofitamab, an immunotherapy that works differently to traditional chemo. If he responds, the goal would then be to move forward to a bone marrow transplant, most likely two BMTs.

Even writing that feels overwhelming and like a terrible dream.

BUT… here’s what hasn’t changed in 125 days.

Talen’s courage.

His resilience.

His ability to smile in hospital beds and push through things no child should ever have to face.

We are exhausted. We are heartbroken. But we are not giving up.

We are praying this trial opens the door to transplant. We are praying his body responds. We are praying we don’t have to think about overseas options. We are praying for a miracle in the middle of medicine.

Thank you for all of your thoughts and messages, to say they’re overwhelming is an understatement. We will try and keep everyone updated as much as we can