Okay, now it's on to plan B. After a day of tests at Mpls Children's hospital and Life Scan in Edina on Wed, we left confident that the results would show the entire nasty tumor had vanished--bowing to the conqueror and acknowledging defeat!
Alas, that wasn't to be the case when we heard the results late on Thursday. There still is a very small area in the chest and neck that showed up white in the PET scan. The CT scan and x-rays were clear. The oncologist said it may just be scar tissue, but there is no way of being certain of this. As fast as this tumor grows, we can't take a chance that there is still residual tumor cells in these areas.
The films will all be sent to the study center to determine if radiation will be the next step--but it is almost certain that it will be. If we are lucky, it will only be 12-l4 treatments, and not real heavy radiation. Even this would probably affect the thyroid and heart. But the risk of leaving any cancer cells alive is also very scary. The study center should have a decision in 1-2 weeks.
Kevin is scheduled to go to camp Make-A-Dream in Montana on June 29th to July 6th. Thankfully they are willing to wait to start the radiation until after he gets back. Then it will be a trip to the cities every day Monday through Friday for approximately 2 weeks.
My work schedule has been escalating dramatically in the past few weeks, and it is getting harder to juggle the time needed to be away for Kevin's apts. I didn't leave the office until 10pm last night. I am in the process of opening a new client--little boy with a brain tumor coming from Mpls Children's hospital. It is weird dealing with the same oncologists and Pediatric case managers in two totally opposite capacities--one as a mother of a patient, and the other in a professional sense related to establishing a home nursing program for family.
Only about a month ago, I opened another adult client with a brain tumor. I am so thankful that Kevin's cancer wasn't in his brain. That is why I consider this just a minor setback, things could be so much worse! I deal with families on a daily basis that battle obstacles so much larger then any of us can even imagine. It makes me feel so humble and grateful that Kevin's cancer is responsive to treatment and curable, even though it is proving to be a formidable foe!