June 22, 2014

CANCER DOESN’T PLAY BY THE RULES!!!
If there is one thing we have learned is cancer does not discriminate, it affects you not just physically but every “ally” you can think of, and it makes up its own rules. Needless to say, it has been an emotional roller coaster this past week. Afton has made tremendous progress over the past two weeks. Her pain level has dropped significantly, her speaking has improved and she has been walking better with the help of the walker. This is not just proud parents bragging, the progress has been so good that the doctors here at Vanderbilt have been working to transition us to receive chemo back home in Mississippi with only occasional visits to take place here at Vandy.
. In preparation, the doctor ordered a full body PET scan. This was unusual because they usually wait until after the 6th round of chemotherapy to do any scans. However, because Afton had so much cancer and so many tumors they wanted to verify that the treatments were in fact shrinking the tumors and killing the cancer.

Well, the PET scan came back and the results were very concerning. The science behind the PET scan (or Positron Emission Tomography) is that cancer tumors are highly energetic and consume significant amounts of glucose. By injecting the body with glucose infused with a radionuclide, the areas with high metabolic activity (cancer) will have higher concentrations of the radionuclide and hence will show up brighter on the scan. This works great except when other parts of the body are highly metabolically active. All this science to say that when the scan came back and were compared with the PET scans taken when we first arrived there were areas that showed significantly decreased metabolic activity (which is good) and areas with significantly increased metabolic activity (which is bad).

The initial read looked as if the chemo was working well on tumors in the soft tissue but not in the bone. In fact, there was fear of new tumors being developed on the spine and sternum. One of the oncology fellows spent a significant portion of Friday talking to multiple experts trying to figure out what was going on and whether Afton’s chemotherapy regimen needed to change. Needless to say, Thursday night and Friday were spent praying and worrying considerably. Late Friday afternoon the doctor came to tell us that the experts had agreed that the new hot spots in the bone marrow were NOT cancer but were areas of the bone marrow where there was no previous cancer that were reacting to the drug Nupegen and were producing significant quantities of red and white blood cells. They are hoping this will be the same result with the spine and tumor areas but required more scans. Afton has since had a spine MRI, Pelvic MRI, several X-rays and two ultras sounds. She is scheduled for a brain MRI first thing tomorrow morning. The tumor board will meet on Monday and Tuesday to reassess her situation. It seems as if Afton’s body is working really well at killing the cancer. However this needs to be confirmed with additional testing so may be at Vanderbilt a littler longer than we anticipated.

One of the other results of the PET scan is that the doctors looked again at her pelvic bone. In the first few weeks they were more worried about keeping her alive and not as worried about the structural integrity of her bones. However, since she has improved so rapidly and started trying to walk again, they are now very concerned that she not do anything to break her weakened pelvic bone. As a side note, when you are on chemotherapy, a body’s ability to regenerate broken bones is drastically reduced. So, if you do break your bone you have to decide between stopping chemotherapy to let the bone heal or keep on chemotherapy to kill the cancer. Not good decisions. The result of this concern is that they ordered her to keep the weight off her left leg. No walking for now. She had already worked up to a ½ a mile a day. It is amazing that just 2 ½ weeks ago her left leg was paralyzed and her right leg had partial paralysis. Nothing stops this child. That news was almost as hard for Afton as was the having the feeding tube. She hates it. In order to finalize the analysis of her pelvic bone, they ordered a pelvic MRI and will tell us on Monday if she is able to keep walking. We are praying that the bone will have enough strength to bear her weight and not break.

As you have seen by some of the photographs and the Beautiful Redefined video, there has been some fun with trimmers and shavers this week. Afton finally cut her hair off and then she and Sheri cut mine off. We have also seen a ton of people who have either cut significant portions of their hair or shaved their heads entirely. Wow, that is really cool that so many of you are showing your support for Afton. I am not convinced that the shaved look is for me and I know that Afton does not like it for herself. However, I think she looks beautiful. I actually think this was far more difficult and emotional than can be explained. Children don’t care as much and adults understand the need of chemo but teenagers, especially teenage girls are defined by clothes, shoes and yes hair. Again, thank you for the solidarity you have offered.

This week was also full of visitors. My sister Amy and most of her family drove up from Atlanta to say hello. That was fun because all of her boys, including her husband Kevin, shaved their heads to support Afton. Sheri’s cousin Brad Breinholt also came to visit. He had business down in Huntsville and when his flight home was canceled because of bad weather, he hopped in the rental car and drove straight up to say hello. Dave Richards and Owen Eslinger from my work did the same thing. In addition we received a visit from the Eckstein’s and loved hearing about Luke’s summer college tour. Also, Afton's friend from Vicksburg, Jessica Schmidt and her two sisters came on Saturday and typical to their nature, Val and Wendy Kraus came bearing gifts of Sonic treats. Val and Wendy have been amazing in their support and we are so grateful for them as well as all who have come to visit.

Saturday was also filled with some surprise and special guests. Two weeks ago a photographer was taking pictures of many of the children here at the hospital. When Afton was asked if she wanted her picture taken, she reluctantly agreed. She didn’t feel that great but true to her nature she toughened up and went. Well the two photographers are triathletes and as they talked with Afton they were intrigued by her story and they bonded over swimming. I told the photographers about Afton’s Facebook page and we left. Later that day, they looked up the Facebook page, saw the video of Afton doing dips and showed all of the triathletes in their club, including their coaches. The coaches immediately wanted to come and visit Afton. They came today. The surprise part was that one of the coaches is Thad Beaty who is from Clinton Mississippi and is one of the guitarists for the country group Sugarland. If that was not cool enough the other coach who wanted to come was Ashley Whitney who is an Olympic gold medal winner from the 1996 Atlanta games. We were blown away that they wanted to come. They spent almost an hour talking and even brought some awesome gifts including the warm-up robe that Ashley wore during the Olympics and one of the guitar picks that Thad used on tour. Afton wouldn’t take the stuff off. It was very neat that they would make time to come.

Thank you everyone for you thoughtful posts, comments and even likes. We have used them to uplift our spirits and keep in touch with all our friends. We are truly overwhelmed by the support and love we continue to receive.