June 25 2014

Round three of chemotherapy starts tonight. After all of the tests and scans and questions from last week, the doctors have concluded that all of the tumors have either grown no larger or decreased in size. That means that we are going to stay with the current chemotherapy regimen because it appears to be working. That's the good news. The bad is that there is still too much cancer spread throughout her body to consider either surgery or radiation at this time. If the chemotherapy continues to kill the cancer cells and shrink the tumors there may be a time in the future that other options are considered.

The other big news from this week is that Afton was given the clearance to start walking again. After the PET scan last week there were concerns that her Pelvis bone was not sufficiently strong to bear her weight and that it might fracture. However, the orthopedic oncologists looked at the MRI of her pelvic bone and concluded that the health risks from not walking (bed sores, blood clots, etc) were worse than the risk of a fracture. Afton loved this because she was terribly frustrated with the “no walking” verdict from earlier. The better news is she can get back in the pool when she gets home.

To help her walk better, she was fitted with some carbon fiber orthotics that help her mimic the energy transfer that your calf and shin muscles normally do. They fit right inside her shoes and strap to her lower leg. They work exceptionally well and she is walking much better and longer. She still requires a walker but just to see her walking again is awesome!!! She walks 1/4 mile twice a day and is hoping to add more tomorrow.

My sister Amy and her husband Kevin and their awesome kids came up again from Atlanta to cheer Afton on. While they were here we went over to the Red Cross and donated four pints of blood. By my calculations, that brings the total of blood donated on behalf of Afton at 206 pints. Thank you to ERDC, Big Blue Band and the Vicksburg Ward. That is phenomenal and will help so many people. Thank you all for helping in this way. Kevin and Amy also helped us make another fun video to help kickoff this round of chemo. We loved having family come to visit.

We also had a surprise visit from another ERDC employee. Lee Miller from my division is up in Nashville doing some training and he stopped by to wish Afton well. It was extremely unexpected and very welcome. Thank you Lee. Our dear friends the Kraus' also came by bringing gifts of swiss chocolate, diet coke and Sunday dinner. Somehow they found out about my adoration of swiss chocolate. Yummy!

We have had several people ask if there was a way to help donate funds for Afton’s medical expenses. We feel honored that anyone would feel so inclined. These donations will be put toward her medical expenses, food, transportation as well as any incidental costs. In order to make it easy to donate, we have established a method to accept donations using the PayPal system. Please click on the link below to process any donations.

https://www.paypal.com/us/webapps/mpp/send-money-online

In the field entitled “Their email or phone number” enter:

mymissionisremission@gmail.com

We have made yellow bracelets and t-shirts to say thank you and to show your support. If you wish to receive t-shirts and bracelets, please email mymissionisremission@gmail.com for details.

Bald is Beautiful

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.

Special Visitors!

Can't believe the visitors who showed up today. Thad Beaty, one of the guitarists for the band Sugarland and Ashley Whitney, an Olympic Gold Medalist from the Atlanta Olympics. They are both coaches for a local triathlete club who found out about Afton. They are amazing people! We are just stunned!!!! Thank you for coming to cheer Afton on and inspire all of us!!!

Rocking the Dome for my beautiful daughter!!!!

Blurred Lines of Chemo

June 16, 2014

Sunday was BFFL day at Vandy. First, Linda and Joe Anderson drove down from Columbus, Ohio Saturday night to visit. We were blown away. Joe was my counselor when I served as bishop in Vicksburg and Linda has been Sheri’s sanity check for years. We love the Anderson’s and are so glad they came to visit. Not to be outdone, Blaine Butler along with Heather Butler, Chip Fields and Carly Copelin came as well. It was so fun for them to come. They were true pick-me-up’s for the Wallace family. Thank you for your visits!!!

Sunday evening also brought a moment no teenage girl should endure, Afton shaved her head. We cut her hair when we first arrived so Afton could donate her hair. As the hair started falling out, we cut it shorter so the piles of hair on the floor would not be so large. Finally, yesterday afternoon she had had enough of the hair everywhere. Dr. Suess’s book was not accurate enough: Hair Hair Every Where. So we cut her hair with clippers then used my shaver to smooth everything out. One thing is abundantly clear, Afton has a beautifully shaped head. It is round and perfect! The hats and scarves that people have sent are fantastic. Thank you, thank you, thank you! It will take her awhile to get adjusted to her new look, but as she has shown us all along, this girl is beyond resilient!!!

When doing a 5 day chemo round there can be one thing guaranteed: the need for Blood - this week brought two more transfusions. We are so grateful for everyone who is donating blood. It will benefit not only Afton but hundreds of others! For some it is easy and for others it is difficult, but to everyone willing we say Thank You. Afton will be receiving tons of blood transfusions during this process and it is important for everyone who can to donate.

Yesterday for Father’s Day we were able to take time to Face Time all of our children. Thank you to those who are loving and helping with our children. I know a lot of people have asked how we can be separated from each other and we admit it is tough. However, with the support we have received, it has made it so much easier. We know our children are being loved and highly entertained, probably even more so than if they were stuck at home with their parents.