June 11, 2014

Today was a sobering reminder of how long this journey will be. We met with Dr. Scott Borinstein, head of the pediatric sarcoma research group at Vanderbilt. He has been working diligently to characterize Afton’s cancer and insure that the most appropriate treatment regimen is applied. He was very honest and direct in saying that Afton’s cancer has metastasized and is all over her body. It is very difficult to treat at this stage. When he first was consulted on Afton’s case he found it difficult to believe the original pathology because they have not seen the Ewing Sarcoma strain of cancers metastasize into the liver. He did indicate, however, that despite the long odds against her, Afton has a lot of things going in her favor. First, she is in excellent physical condition, second, she is eating very well and third, early indications are that the tumors are responding very well to the chemotherapy. He told us that the primary chemotherapy regimen is a 30 week program with alternating rounds of drugs administered every two weeks. Because chemotherapy significantly reduces the ability of the bone marrow to produce red blood cells, treatment can drag on longer if the white blood cell’s don’t recover. He told us that Afton’s response to the first round of chemotherapy was excellent. That is good. During the course of the treatment they will take CT and other scans to assess how the treatment is working and make adjustments as necessary. Because her cancer has metastasized, localized treatment using radiation and surgery is not possible at this time. Our prayer is that Afton’s cancer continues to respond well and that the tumors will rapidly shrink. Another very positive discussion was on when we can think about bringing Afton home and what conditions will be necessary for her when she is home. In the end, everything will depend on how well her blood counts look as this round of chemotherapy progresses.We will keep everyone posted.

Once Afton does return home her routines will not be the same as before. Every two weeks, following her chemotherapy, her immune system will be severely compromised and she will need to be vigilant with her cleanliness and contact with others to minimize the risk of infection. Knowing how much Afton loves to socialize, I think this will be one of the more difficult aspects of her treatment. In addition to keeping her somewhat isolated, she does not have the strength she once had to be as active. The cancer as well as the chemotherapy have significantly weakened her body. Walking is laborious and painful. However, knowing that her leg was completely paralyzed two weeks ago, we are ecstatic with her current condition.

A lot of other things have been going on.

1. Driving - I left Nashville last Thursday and since then I have driven over 1700 miles. I spent Friday in Vicksburg, drove to Dallas so my mom could see my niece and nephew, Erika and Chandler Brown. They both recently returned from serving missionaries in South America and it was wonderful to see them. The visit was exceptionally short, however. We went to church with my sister’s family on Sunday then immediately drove back to Vicksburg. On Tuesday, Kaylynne and I drove back up to Vanderbilt. That is a lot of driving in a short amount of time. Thank goodness our trusty van keeps rolling along!

2. House changes - In an effort to make sure Afton has a “clean" room that will allow her to recover when she returns home, we decided to renovate the upstairs bedroom at our house. I mentioned to Bishop Lance that we may need a little help Monday evening. Word spread and before noon on Monday the entire carpet had been removed, the toilet removed and by Monday evening the entire upstairs re-painted. Our friend Nick Jones from Brandon is putting in new hardwood floors and Aaron Byrd and perhaps others installed the new toilet. I’m shocked at the generosity of time people are showing to help out. Thank you to everyone who came by on Monday. I wish I could thank every person by name.We are excited to have a room that should be able to be sanitized a littler easier without carpet.

3. Chemo side effects - Afton started her 2nd round of chemo last night. So far she has done very well. She has not experienced any nausea or vomiting. However, the some of the other side effects are starting to manifest themselves. First of all the exhaustion is evident. Because chemo reduces the red blood cells and attacks other living parts oft he body, it can be exceptionally tiring. Afton has never been one to sit still for long and the fact that she is in the hospital bed for so many hours a day is discouraging. However, true to her form, she forces herself to get up and go visit people and walk around the hospital wing. The other big side effect is that Afton’s hair is starting to fall out. As she looked in the mirror this morning, she saw a bald spot starting to appear and then began to cry. She cried for about 15 seconds, turned around, smiled at me and said, “oh, well!” I am constantly amazed at my daughter. She is truly inspiring. I am also grateful to the Peterson family and their movement of #tightpantsforaftonschemo. I am pretty sure we have never laughed so hard in our lives. Neither has the nursing staff. We have definitely left a legacy.

4. Miss America - Afton got a visit form the reigning Miss America today. Nina Davulur, the 2014 Miss America,i serves as the National Goodwill Ambassador for Children's Miracle Network Hospitals and she came to the Vanderbilt Hospital today. it was awesome.

5. Noticeable improvements - I was gone for three and half days. Upon my return I commented that she has made noticeable improvements. Her speech is easier to understand and her walking is much better. We are grateful for even the small improvements.

6. Visitors - The most important visitors came over the weekend and this week. Kaylynne was able to spend time this entire week with Afton. Further, Sheri’s parents arrived Monday night and have stayed in Nashville this entire week. It has been so much fun to spend time together. As Sheri’s dad left, he put his arms around her and said he just needed to come and hug his daughter and granddaughter. I know the feeling was mutual for them as well. Afton commented that she loves to hear her mom and Grandma Coco talk and laugh. I am glad we had this time with family. It really lifts our spirits.

7. Sheri remains a superstar. I always knew I married up but this past few weeks have further demonstrated how much I admire her. She has spent every waking and sleeping moment with Afton for the past three weeks. She has had to deal with a tremendous load and I am so grateful for her. After 18 years of marriage I realize more and more how lucky I have been. Thank you Sheri!