cranial radiation

This has been such a big week, on many fronts. We celebrated Ethan's return to preschool on Monday and Tuesday and then had a very long day on Wednesday at the hospital. Ethan's sedation for chemo into his spine went well with no complications and our visit to the clinic for his IV chemo went fairly quickly. Despite the growing sense of "normal" with procedures and treatment, some days are just harder than others, and Wednesday was one of those days.

Wednesday afternoon we met with Ethan's radiation oncologist to discuss the radiation therapy that is scheduled as part of his treatment. This has been one of the biggest concerns for me as his mother, knowing that there are many long term effects that can result from radiation therapy - and so I was thankful to have a thorough explanation of why he needed treatment and what was involved.

One of the biggest reasons why I have questioned the need for radiation in Ethan's treatment is because he did not have any leukemia cells in his CNS fluid when he was first diagnosed. CNS fluid is often a place where leukemia likes to "hide out" and so it was a huge blessing to learn that he did not have any leukemia there. The radiation therapy that he will receive is cranial in order to attack the CNS fluid that covers his brain - and so I wanted to know why he needed to have radiation to his brain if there wasn't any leukemia there in the first place. Perhaps you can understand my concern!

The answer is basically that the radiation therapy is prophylactic - meaning it is done in order to prevent any future relapse of his leukemia in his CNS fluid. Even though it wasn't there to begin with, in a relapse, the leukemia could still grow in his CNS fluid. Ethan's leukemia is also classified as having an intermediate risk of relapse, based on the fact that his leukemia took longer to clear from his blood during the induction phase of his treatment. Because of this elevated risk level of relapse, his treatment is more aggressive and does include cranial radiation in order to prevent a future relapse.

We talked through the risks and effects. He could have problems with memory and comprehension in math and reading, issues with his pituitary gland in areas of growth and thyroid, etc., and the possibility of brain tumors years later (either benign or malignant) from the radiation treatment. There is also the potential for developing cataracts in his eyes.

In summary, this sucks! But we also can't avoid the radiation therapy because everyone involved is expressing it's importance, in addition to chemotherapy,  in helping to cure Ethan's leukemia and preventing a future relapse. We all - doctors, parents, family, friends - have the same goal of wanting Ethan's cancer to be cured and gone forever. And so this is another step in the journey toward that goal.

So, it's hard to say we felt better after our meeting with the radiation oncologist, but it was a very helpful time to gain more insight into why and what is involved. The first step in getting his radiation therapy started begins on Monday morning, where he will be sedated in order to have a mask made that will help to hold his head in place during his treatments. His radiation will take place in 8 consecutive day treatments starting next Wednesday March 19th. He will have treatments each morning Wednesday through Friday next week and then Monday through Friday the following week, and will be sedated for each treatment. This is in addition to his already scheduled chemotherapy and clinic appointments.

How you can pray for Ethan (and us) right now:

• Please pray that Ethan's cancer would continue to remain in remission. 
• Please pray for protection for each of the 9 scheduled sedations over the next 2 weeks. 
• Please pray that Ethan's brain will be protected from the possible negative effects of radiation therapy - for his memory and comprehension and pituitary gland functions to remain intact, and for protection against any future cancers due to the radiation and chemotherapy treatments. 
• Please pray for comfort and calmness for Ethan in his treatments - that he would know that he is safe and for God to take away any fear or anxiety. 
• Please pray for discernment in hiring a part time nanny and developing a solid caregiver plan for Eloise for the expected and unexpected ahead. 
• Please pray for protection over Pete and I's marriage. This is tough stuff and can make for tense times individually and together as we try to navigate and make decisions on everything that is required. Please pray that God would keep our hearts knitted together.

We are continually thankful for your prayers and encouragement. Thank you for continuing to lift up our boy and our family - we are beyond grateful.