Radiation Update: January 26, 2015 The last 7 months has been an endless game of risk assessment. Luckily, we have had exceptional help from doctors who have explained the “risks” in such a way that our decisions were easy. However, I must admit that we feel exhausted at having to make life-altering decisions again and again. When it comes to radiation therapy, the “game” has taken a whole new twist. When the Vanderbilt tumor board met regarding Afton’s case following the scans in January, they concluded that the best course of action would be to give Afton the “standard” radiation therapy treatment for Metastatic Ewing’s Sarcoma. This consists of daily radiation treatments every day for five weeks. They turned to this course of action because with metastatic disease, you are never sure which of the previous cancer sites will become active again so you try to treat them all. However, because Afton had so many, they were concerned, even with the standard treatment, that they would not be able to treat them all. So even with this treatment, there is a risk that some of the metastatic tumors that are not treated with radiation become active again. Scary, but that is the deal with this disease. Another concern we had was the huge impact of such a lengthy treatment regimen. I know we are lovely and fun to be around, but lets be honest, who really wants guests for 1 week of assessment and 5 weeks of radiation treatments, 25 doses in all. After much discussion, we decided that the best solution would be to transfer Afton to the Huntsman Cancer Institute and Primary Children’s Medical Center in Utah. Afton will transfer treatment anyways in the fall when she begins Brigham Young University and both Rob and I have lots of family in Utah. If your going to impose…, why not on family--right? So we started to make plans. Last Thursday, (January 22nd, 2015) we received a call from the radiation oncologist. He had spent a lot of time with Rob and Afton earlier in January discussing the different options and we feel like he was responsible for saving Afton’s life last May, so we really like him! Anyway, he told us that he went back to the January scans and looked more closely to determine if a shorter, but more intense, radiation treatment was feasible. This is a preferred option when they know the primary tumor location because it destroys all of the cancer cells (and any good ones) but can only be used for smaller areas. It was never considered previously because they were not entirely sure of the primary location and, as with the “standard” treatment, there was so much disease, which sites do you choose to treat? However, after the reexamination of the scans, he felt strongly that the chemotherapy was so successful that the soft tissue tumor on her left pelvis was no longer active and did not require radiation treatment at all. In fact he said that he could see no appreciable difference between the soft tissue on the left and right sides. He said that he felt there were two smaller areas on her pelvic bone that looked different than the other bony areas and that he would like to concentrate the high intensity radiation on those sites. This is a huge deal. We have asked for the faith and prayers of many so that the doctors would be able to treat the “primary” locations so that Afton has the best chance of reaching remission. We feel that this is an answer to prayers. Further, this more intense treatment only requires five treatments and can be completed in one week. There is still the same risk that one of the metastatic sites not treated becomes active again which is no different than the “standard” treatment. The good part is that the risk of these two “unusual” sites becoming active after the radiation treatment is very small. So, with all that, and with our hearts in our throats, we have decided to return to Vanderbilt and have Afton undergo the more intensive, but much shorter radiation treatment. They will also treat the bony sites on her vertebrae that were cancerous last May, even though they do not appear active at this time. We were also blessed to welcome home a dear friend and “family” member from his LDS mission to the Atlanta Georgia North Mission. We love this kid like our own. He took some time to decide to go on a mission and graduated from Mississippi State in Accounting before he left. It was wonderful to watch his growth over the past two years. We spent many late nights looking at pictures, listening to stories and playing games. His parents are some of our most dear friends, Joe and Linda. They moved to Ohio two years ago and I have cried into my Sonic Diet Coke many times lamenting about life without my Lindy. It was a short visit but a nice emotional boost for our families to be together. Thank you Andersons for spending the weekend. We have also learned that Afton’s high school graduation is on the anniversary of her diagnosis. I am still feeling overwhelmed and blessed that we will be able to celebrate with her. We are so blessed by the faith and prayers of everyone. Both Rob and I are constantly stopped as we are about town and asked about Afton. We continue to see the blessings from of a loving Father in Heaven who is watching over our family.
Posted on: Tue, 27 Jan 2015 07:19:47 +0000