Dear friends,
Bram is amazing. He just had 2 more rounds of surgery this week. And I am glad to say they both went well. On Wednesday Bram had a Lumbar Punction done. A CSF sample (brain fluids) was extracted from his spine and is currently checked in the lab. This is done to make sure there are no tumour cells in his spine which might need treatment as well. We hope to get the result in the next couple of days.
On Thursday Bram had a tracheostomy inserted in his windpipe. He now breathes through this, bypassing his throat. This was done to give Bram a safe airway during radiation treatment. Bram is currently receiving oxygen support, but hopefully will be able to live without oxygen in the near future. As a result Bram has no more tubes or dressings in his face and we can finally see his normal face again 😃.
In the next weeks Laura Sengers and I will receive the training necessary to care for Bram. All going well Bram’s tracheostomy will be taken out after treatment has finished and all swelling has disappeared.
Bram is getting used to breathing through his tracheostomy, suctioning to remove his mucus is much more comfortable than before, and no more oxygen tube in his nose. His smile has already returned. He is still very tired from these operations but will get stronger very soon.
The plan is to stay on the current ward for a week, than move back to his oncology ward for a couple of days before being transferred to UCLH. After arriving in UCLH a CT scan will be done and a face mask will be custom made. Actual radiation treatment is scheduled to start on Monday 7th of September.
Love,
Jeroen, Laura, Max and Bram