Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

On Friday, April 4th, Wes went to his Endocrinologist for a check up, and to get additional testing done regarding growth hormone replacement that needed to be done. The following Monday, April 8th, I received a call from his Endocrinologist, Dr. Smith, stating that some of Wes’ blood work came back elevated, and he had added what is known as a tumor marker to his panel. This tumor marker came back positive, meaning it was more than likely our son had cancer…again. Dr. Smith ordered an MRI to confirm the results, and on Thursday, the 11th, we were told that there was a tumor found in the pineal region of Wes’ brain, and that it was presenting as a different tumor type than what Wes had before. We were referred to Primary Children’s Medical Center in Salt Lake, to Dr. Zeinab Afify, a pediatric oncologist, whom we had seen seven years previously for Wes’ first bout with cancer. Dr. Afify had us come down to the clinic on April 16th for a lumbar puncture, additional testing, and visits with multiple specialists. The following day, the 17th, we were told that Wes most likely had what is known as a non-germinomatous germ cell cancer. Initially, it was recommended that we begin with an extremely invasive neurosurgery, which would possibly incapacitate our son. However, we were then told that his care team (consisting of multiple oncologists and radiation oncologists, a neurosurgeon, as well as a pediatric brain tumor specialist) felt that it would be better to begin chemo first and monitor the tumor’s response. So, we will be headed down to Primary Children’s tomorrow for Wes to have his port insertion on Wednesday, April 24th, and he will begin his first chemotherapy treatment the following day. Wes will have to be admitted as an inpatient for each chemo treatment, due to his Diabetes Insipidus, which complicates the infusions. At this point, we have been told that he will have at least 6 rounds of chemo, which will alternate between two separate treatment types. Each round will last 21 days; odd treatments (1, 3 and 5) will consist of Carboplatin and Etoposide and will require a 1-2 day inpatient admission. Even treatments (2, 4 and 6) will be Ifosfamide and Etoposide, with Neulasta and another drug I didn’t catch the name of as well, and will require a 5 day inpatient admission. Throughout his treatments, his doctors will be monitoring the tumor to ensure it is responding to the chemotherapy. If it isn’t, he will need to have the neurosurgery. If, at the end of all 6 treatments, some of the tumor remains, he will need to have the neurosurgery.

At the end of chemotherapy, if all goes well, Wes will then need to complete around 5 1/2 weeks of radiation therapy. His team feels he needs a special type of radiation called Proton Beam radiation. This type of radiation is only available in Seattle, Phoenix and Houston on the western side of the US. Since Seattle is closes, that is probably where we will go, but that isn’t until September at the earliest, so we’re not making any concrete plans at this point.

Clinically, that is where things stand right now. Wes is in good spirits, all things considered, and both Cody and I have complete confidence in his team. His radiation oncologist said that Wes is now considered special, and that being special in medicine is never a good thing. I don’t know how optimistic to feel yet. I guess I’m what I would call “cautiously optimistic” for now. We haven’t been told that there’s nothing that can be done, but surgery is still on the table. I guess we’ll see. Here are some pictures of my “special” boy.