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.

Victory Dance: Chemo Round 2 Complete

June 13, 2014

13 THINGS WE’VE LEARNED IN HONOR OF FRIDAY THE 13:

13. If cancer could be cured through eating Oreos, Rob would have found a cure by now.
12. If Oreos don’t solve the world’s problems, Rob will work them out through the consumption of peanut M&M’s.
11.There is a song for every occasion. For example, if a nurse asks if you want miralax you sing Twisted Sister’s “We’re Not Gonna Take It!”
10. Once you hear the song “tight pants” it is nearly impossible to get it out of your head!!! (See Jimmy Falon and Will Ferrell but consider yourself forewarned) However Jimmy Falon, Will Ferrell and JLO have nothing on the Peterson Family’s version of #tightpantsforaftonchemo.
9. Laffy Taffy jokes are funny when you are sleep deprived.
8. Mark Larsen Rumpus from Rumpusville, MS, who just happens to share a birthday with the person Afton is named after, has brought “a lifetime supply of happiness.” (Thank you Sam Lance!)
7. The writers of “Modern Family” must have been spying on Rob Wallace to create the character of Phil Dunphy. He may have his “phil-osophy” but we have our “robology.”
6. When Afton was almost knocked out on drugs and asked what her second form of birth control was—she said “abstinence.” When the doctor said something full proof, she said, “it will last until I’m married so we’re good. It’s called values.”
5. Afton on midazolam or versed is hilarious. She gives the nurses pep talks on how strong she is and that she is going to be fine. “Bring it in girls. . .”
4. Ms. Fairchild’s beach is better than Mr. Wong’s AP summer packet.
3. Afton HATED her feeding tube. She is a swimmer and she likes real food!!!!
2. Radiation masks may be ugly but who wants to get nuked in the wrong spot?
1. There is strength in numbers!!! Thank you everyone for your thoughts, prayers and kind words!!!

June 12, 2014

Day 3 of Chemo is officially in the books. Today was a rough day for Afton. She woke up 16 pounds heavier today than yesterday thanks to all the fluids that she had pumped in to her body. We weighed her 3 times and on different scales since none of us could believe that it was actually that much of a difference. Unfortunately we all know, what comes in must come out. She was given medicine to “flush” her system. People aren’t kidding when they say that your body is at war during chemo. I don’t know if I am a blessing or a curse but I do serenade Afton with rewritten songs. I think sometimes the staff here wonder why there is so much laughing coming from room 6744. Afton has inherited her mother’s cackle.

Afton also enjoyed the benefits of all those blood donations going on for her behalf with another transfusion today. I think secretly she read Twilight one too many times and has a desire to be a vampire. I feel betrayed because I thought she was Team Jacob and to find out she really is Team Edward is a disappointment. The blood transfusions seem to make a huge difference and give her so much energy. Thank you to everyone who donates!! Keep it up! It really does save lives. On a side note, if you have not been tested to be a bone marrow donor, please consider doing this as well. Watching these children wait for a match tears at your heart!!!!

This round of chemo has also brought a huge hair loss. Afton is not quite ready to shave the head yet so in an effort to hide some of the bald spots we went with a pixie cut. You would be happy to know Bonny that I am becoming quite the “Barbra” during this experience. I have told Afton when the time comes to shave her head, we will do a “tonsure” ritual to make it more “fun” if shaving your head for a girl can be fun.

Afton had a tumble when she was walking today. I know she gets so frustrated by her new limitations. The charge nurse had to interview her about the fall. They were worried about her being injured and she was more worried that they would limit her physical therapy. Her will to fight amazes me. She has tears and frustration but after she gives herself a few minutes of pity, she takes a deep breath and is ready to fight again. When I helped pick her up today, I held her in my arms and told her I wish I could trade places with her. She just held my face and told me she would never want that to happen. I told her one-day, she will understand that as a mother, I want nothing more than to shield her from every bad thing that could happen to her. I would willingly take this away from her, but be assured, I could never handle it as well as she is handling it.

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!

June 8 2014

As the doctors came in for this morning evaluation and began with, “Day 14 of 17 year old female . . .” Afton and I exchanged a look expressing the notion of has it really only been 2 weeks and not 2 years. The staff continues to be stunned and thrilled with Afton’s progress. Her numbers look great at this point in the process. We will proceed with round three of Chemo on Tuesday. The hope is to find out the “roadmap” of treatment tomorrow. Afton has moved from the less than 1% survival rate to a 10-15% survival rate. We know the odds are still against her but she is a fighter.

Afton continues to make huge strides in her physical therapy. As she makes her rounds around Pod A, she is having the chance to meet more of the patients. It is good for her to bond with other patients. She does have the most hair however that will not last much longer as it has started to fall out at a faster rate.

It was fun to have Kaylynne come up for a visit this weekend thanks to Marisol Byrd. It was nice to listen to the girl’s laugh and giggle. It makes a mom’s heart happy to hear those sounds. It even made me happy when they got on each other’s nerves. It was nice to have a bit of “normal” it what seems like a surreal life that should belong to someone else.

I have found myself thinking back to the day we brought Afton home from the hospital. Rob’s Uncle Scott came to visit and cradled Afton in his arms and serenaded her with the song Thank Heaven for Little Girls. “For little girls get bigger every day! They grow up in the most delightful way.

Thank heaven . . . thank heaven . . .
Thank heaven for little girls!

June 6, 2014

I made a quick trip down to Vicksburg yesterday and today to take care of a number of matters. Sheri stayed at Vanderbilt to be with Afton. I was not prepared for what I experienced. Before I even left the house Dana Tankersley and Tondia Ferracci walked right inside the house and started cleaning. I was in awe that they would spend some of their precious summer time to clean our counters and mop our floors. I left the house in their hands and this type of treatment continued. I was stopped at the bank and asked if I was Afton's father. I confirmed that I was and then was told that she and her family and her church group were all praying for us. I then went to my office and what was supposed to be a 15 min in and out dash ended up being two hours as person after person saw me in the hall and raced over to tell me that they were thinking of us and praying for us. The same thing happened at the high school, at the bank again that afternoon and at the DMV (more about the DMV later). It happened at Mission Primary Care and at the pharmacy on they way home. People have just gone out of their way to shower kindness on my family and especially on Afton. I have probably used the following expression a hundred times over the past weeks but words simply cannot express how we feel about your kindness, your generosity and your faith. We have been lifted up, prayed over, cheered on, supported and encouraged by an army of people, many of whom probably don't know us personally. Thank you for helping us in every possible way.

As you can see by the photograph I published earlier, Afton's feeding tube was removed today. True to her nature, she has been excessively motivated to get that thing taken out. She hated it so badly. So she asked the doctors exactly what metric they needed to see her accomplish so that she would qualify to have it removed. Wouldn't you know that four days after being removed from intravenous feeding, she has achieved what she set out to do. I have an amazing daughter who has achieved most every goal she has ever put her mind to. Wow! I am one proud papa!

Now, about the DMV. Kaylynne's one year probationary stay in driving limbo (the learners permit) ends next Friday. I did not know if we would be back to help her get her license on that day so I took her down today where she took the driving test. She passed. Congratulations Kaylynne! My insurance bill will never be the same. Two teenage drivers. Yikes!

June 5, 2014

So, today was filled with lots of therapy. Physical therapy, speech therapy, retail therapy Just kidding. All that was purchased was lunch at McDougal's Chicken. It was tasty. The speech therapy and physical therapy was real. I am sure that Sheri and Afton will indulge in proper retail therapy at a later time. In all seriousness Afton is doing better. She is eating like herself, talking more like herself and acting like she feels a ton better. They are reducing the pain medicine one step at a time as her body allows it. That is good. She has said that because of all the pain medication, she does not remember much of last week. I wish I could forget it as well.

Despite all the great news from this morning, the reality of what is involved in overcoming cancer is daunting. The cancerous tumors are still wrapped around many of the nerves that control her leg and mouth movements. She is up and walking, but with great difficulty. The doctors say that many times the tumors are re-absorbed into the body and disappear completely. Other times, the tumors leave behind scar tissue that, while no longer cancerous, can significantly impact the bodily systems where the scar tissue remains. The shrinking is good, re-absorption is better. I'm praying for re-absorption.

In addition, she still has a minimum of 29 weeks of an intense chemotherapy regimen in which her immune system will be continuously compromised. This means that even small and seemingly insignificant illnesses can be deadly. Getting back to a normal routine, including school this fall, will be a challenge. We are so lucky, however, to have a fantastic high school principal, teachers and coaches who have already promised to work with us on helping Afton complete her senior year. Thank you Warren Central High School for your support. We do not know how soon Afton will be discharged, but at least we are talking about it. That is good.

We have had a chance to meet some of the other families on the floor with us and hear their stories. I am inspired and heartbroken all at the same time. These kids are amazing in their determination to overcome cancer despite the massive amounts of pain and difficulties they face. Some of these cancers are truly scary. I pray that pediatric cancer research will receive the same attention as some of the adult cancers so that better detection procedures and better treatment options can be developed. While we feel blessed that Afton is responding so quickly and so well to treatment, cancer still impacts far too many people with dire consequences.

I still can't thank you all enough for being interested and concerned about Afton. I was talking with one of my co-workers on the phone yesterday and he indicated that he had no idea how he would handle what we are going through. The reality is that no one, including Sheri and I, knows how they will handle such a situation until it comes. We have just tried to move forward one day, or sometimes one hour at a time. Having so many people remember us in their thoughts and prayers has made this nightmare infinitely more endurable. We have felt of your strength and are buoyed by your faith.

Thank you.

June 5, 2014--Good News!!

Huge news. The CT scan results came back this morning and the tumors are measurably shrinking. These tumors are shrinking because of the chemo. Wow. Wow. Wow. Wow.

June 4, 2014

I have heard from a number of people that they are waking up in the middle of the night waiting for my daily FB updates. I wish I could talk with you all personally, but this is much more efficient. Anyway, in my quest to keep myself organized, here is today’s list of fun and exciting events pertaining to Afton’s recovery.

Wiggling Toes and Walking - I feel we are witnesses to a miracle. Afton started wiggling her left toes again tonight. She is walking with the aid of a walker and she gets better every day. From not being able to move her leg to wiggling and walking, wow! She even walked the loop of the Pediatric Oncology ward today.
The doctors and nurses were astounded that she would get up and walk a few steps in her room but when she used her sheer determination to walk the circle they cheered her on. When her night nurse came on shift she walked in and said she heard Afton was making round and everyone is talking about it. Man this girl makes her parents proud.

PET Scan - The results of the PET scan came back this morning and the results were unfortunately, exactly what was predicted. In other words, there were no surprises. Sitting through the scan was terrible, but she painfully made it through.

Lab Report - The final genetic testing came back from the tests on the biopsy and the the results are that Afton’s cancer is the most common form of Ewing Sarcoma. That is good because this form has the most research and the best response to the chemotherapy that we are using. However they are still trying to figure out why it is growing so aggressively and why it is in her liver. Although this is an aggressive cancer, hers is much more so than what they have seen. In addition, they don’t see Ewing’s in the liver. This is something they will have to figure out.
 
Visitors - Surprise of all surprises. Corey Howlett, one of my childhood friends from Alaska, showed up with his wife Melissa and all of their eight children. Holy smokes that was fantastic surprise. I’ve known Corey since I was five years old and he was three. We rode bikes together in the woods near our homes, threw rocks at cars together (don’t tell anyone that), he taught me how to fly airplanes and now he shows up over 4,000 miles away from his home to wish us well. What a fun visit! In addition, Kristi Pierce, our neighbor whose daughters swim with Afton and Emily Wolfe and her daughter Ronnie brought up a package from our house. They also brought the mail, and the bills. I hate bills!!!
 
Packages - In addition to the packages that Kristi brought, Afton received another huge load of mail today. Thank you all for taking time to send so many thoughtful cards, presents, gift cards, etc. We are simply without words for the way you have all reached out and shown your love and affection. They brighten her day and she loves reading the messages. The loves she feels (in fact the entire family feels) is sustaining her.
 
Temple Trip - I was able to sneak away for a few hours and travel about 35 minutes to Franklin, TN and go to the Nashville Temple. I love the peace and comfort that attends the temples. It was a good escape. Cary Talbot, that is number 33.
 
CT Scan - Afton had the last diagnostic done today. They took a CT scan of her chest. I think they wanted to make sure every part of her body was covered so they can compare progress when future scans are taken.
 
Blood Drive - Oh my heavens, thank you to everyone who donated blood at the ERDC blood drive yesterday. They received 125 pints of donated blood and had to stop because they ran out of supplies. There were still a number of people waiting to donate. I know that there are future blood drives scheduled in both Vicksburg and Clinton. I will send out details regarding these blood drives later. Again, I can’t thank you enough for these donations. While Afton will never (I hope) need 125 pints of blood, there are hundreds (literally) of people who will benefit from your generosity. Thank you!
 
T-Shirts & wrist-bands - Some of you have asked if there will be more wrist-bands and the answer is yes. We have also ordered a number of T-shirts in Afton’s honor. Please recognize that you are not obligated to donate anything for these wrist-bands and T-shirts but we are so grateful for the donations that we have received. This money will go toward the yearly maximum deductible and any travel costs that we have incurred during this nightmare.
We received a phone call from one of our friends today who had flown to North Carolina. He saw someone in the airport with a yellow bracelet and approached him to ask him about his bracelet as he was wearing his #Aftonstrong bracelet. Ironically he was also wearing an #Aftonstrong bracelet and was visiting from Vicksburg. We are learning it is a really small world.
 
Doctor’s prognosis - Ok, now for the good stuff. The Doctor is fairly confident that with the progress Afton is making, they will either transfer us to a hospital in Jackson or send us home after the next round of chemo. It will all depend on how well her red and white cell counts respond but since she responded so well to the first round of chemo, they are fairly confident we will be able to bring Afton home. That is so exciting I can hardly contain myself. Afton is still very sick, but they now are confident in what she has and how to treat it. That is a far cry from where we were two weeks ago.
 
Sheri and I - many of you have asked how Sheri and I and the other children are doing. Well, to be honest this has been the most traumatic two weeks of our lives. We thought it was bad when Abigail had to have surgery only a few weeks after she was born. Then we thought it was bad when Kaylynne had a bone cyst that had to be removed. Those were chump change compared to this. We have felt things that no parent should have to feel. However, I can honestly say that it has been one of the most spiritually rewarding two weeks of my life. I cannot tell you enough how much the prayers, well-wishes and continual inquiries into our well-being have meant to us. I have never loved the heat and humidity of Mississippi but I have always loved the people. Now I know why. You have reached out and shown us such love and consideration that there are no words sufficient to state how we feel. So many people have asked what they can do and quite frankly you have done exactly what we needed. You have given us your hearts, your faith and your prayers. Thank you.
 
Success - While we have received very good news today, this fight is not yet over. Ewing Sarcoma can come back and sometimes returns even when the initial chemotherapy is successful. Further, there is likely bone damage that will need to be surgically repaired. We will not know how significant this is until the cancer is in remission. Success for me will be when this cancer is in remission, when Afton is swimming again and feels like herself and when my family is back together again. Until then, if you have faith, please pray that the chemo will continue to be successful at removing the cancer, that the bone damage will be minimal and that she will continue to regain the full use of her legs, mouth and feet.

A picture says 1000 words!

June 2, 2014

It is birthday season at the Wallace’s. On May 16th it was Afton’s, on May 29th it was Kaylynne’s and today it is Abigail’s. What crappy birthday’s for all of them. Afton has cancer and Abi and Kaylynne’s sister and parents are just gone. Our kids have been awesome, amazing, stupendous and fantastic through this entire ordeal. Thank you also for helping Grandma Wallace this past week. Thanks also to David Wilcox for providing a special cake and ice cream. We are so grateful for everyone who is watching over and taking care of our children back in Vicksburg.

Afton’s condition seems to have stabilized. We have asked 

for a miracle and we believe it has been granted. Afton’s downward spiraling and out-of-control symptoms have stopped getting worse and in some cases have improved. There are still many tumors in her body that are causing partial paralysis in her left lower leg and mouth. This makes it difficult for her to walk and to speak. The doctors think that the with time many of these neurological problems will be reduced as the chemotherapy fights off the cancer, but we will not know the long term impacts for some time.

When we first arrived and the oncology department looked at Afton’s CT scans, it became clear that surgery was not going to be an option immediately. She had too much cancer. Dr. Holt then transferred primary responsibility (since she is a surgeon) to Dr. Pastakia who is a pediatric oncologist and a specialist in Ewing’s Sarcoma. Dr. Pastakia has been amazing. He has made all of the correct decisions regarding treatments and procedures and we feel very blessed that Afton has been in his care. He even cracked a smile and was extremely encouraged when Afton began moving her left leg again. All of the Dr’s and nurses are astonished that she is still alive. It was looking very bleak for a while.

       Below is my list of events that we wish to share:

 
1. Blood drives - So many of you have asked what you can do to help us. We feel that we have been so blessed and that most of our needs have been met. However, since Afton has been receiving blood as part of her treatment, some have asked to organize blood donations on her behalf. As of now there will be three blood drives where you can give blood on Afton’s behalf. The first is a previously organized blood drive that will be held tomorrow at ERDC and is primarily for ERDC employees who wish to give blood. This is the information from the email that went out this morning:

The ERDC Blood Drive is scheduled Tuesday, June 3, from 8:00 a.m. - 4:30 p.m. in the CHL Conference Facility, Room 495 of Bldg 3200. Please call me to schedule a time as I'm sure they will have a large turnout tomorrow. In order to give for Afton, please tell Mississippi Blood Service Personnel that you are donating for Afton Wallace and her code is "DH41". Remember, you do not need to have the same blood type as Afton and realistically it is unlikely that your blood will actually be used by Afton. BUT, it will be used by someone that is in desperate need of life-giving blood.

The other two blood drives will be held as follows:

June 18 (Wed) from 4pm -8 pm in the parking lot of the Clinton LDS chapel. The address is 1301 Pinehaven Dr, Clinton, MS 39056. Diane Roskelly is the contact individual for this blood drive. Her email is droskelley@hotmail.com. Please contact her to schedule times to come. The same code “DH41” will be used to credit the blood to Afton.

June 21 (Sat) from 10 am- 3pm at the parking lot of the Vicksburg LDS chapel. The address is 6300 Indiana Ave, Vicksburg, MS 39180. Renee Crimm will be the contact individual for this blood drive. She can be reached at renee.crimm@att.net.

2. Visitors - Afton’s aunt Deanne, her husband Nick and their four children drove down from Indianapolis on Friday and stayed through Sunday. What a fabulous weekend visit. Deanne helped Sheri decorate the room with photographs and cards. It looks wonderful. On Saturday, Afton’s teacher Andrea Fairchild made a surprise visit on her way up to Indiana to visit her mother. Afton was completely shocked when the door opened and there was Ms. Fairchild. It really lifted Afton's spirits. Some of our friends from Mississippi who now live in the Nashville area also came to visit. Thanks to Wendy Krause and her son Josh for making the effort to come despite arriving home from vacation that same day.

3. Food - Afton has not eaten any significant amounts of solid food for about three weeks. Prior to that she had no appetite. Between 21-April and 26-May, she lost 24 lbs. Since arriving at Vanderbilt she has lost an additional four pounds despite being fed intravenously. Needless to say this has been a very major concern for everyone. However, today she started eating solid foods again. That is a huge deal. While on chemotherapy they want her to consume 3500 calories per day. Eating solid food again and having an appetite is so huge. This is a good start

4. Gifts - first thing this morning one of the nurses knocked on the door and when I opened it I could not even see her face because of the number of boxes and packages that had arrived. Holy cow, there were six or seven packages and over 20 cards just this morning. Further, she has received dozens of e-cards. What a blessing to have so many people who are concerned for her welfare. Thank you.

5. Physical Therapy - The tumor that is wrapping around her lower spine is still constricting the nerve such that she cannot properly move her left leg. While the radiation therapy made significant progress at halting the advance of this tumor, she still is not able to walk properly. Today, physical therapy came and helped her get up and start walking again with a walker. This is the first time she has been able to move like this in two weeks. Considering that only last week we thought she may never walk again, this is good progress.

6. Speech Therapy - The tumor around her pituitary gland is in the same status as the one on her spine. We think it has stopped growing but it has not shrunk enough for her to regain complete use of her mouth and tongue. Speech therapy came today and told her to practice words that make her mouth work properly. We decide that the following phrase was perfect, “The rain in Spain stays mainly on the plain,” and “Moses supposes his toeses are roses, but moses supposes erroneously.” Miss Nancy, that was definitely for you.

7. Scans and biopsies - The tertiary report came back from the labs in Omaha and confirmed that this cancer is a small blue cell cancer. They are performing one final genetic test to verify that it is Ewing Sarcoma. At least we know that the chemotherapy that we are using is appropriate. That is good. Because of all the emergency procedures that were conducted last week to stop the growth of the cancer, we never completed a Positron emission tomography (PET) scan. This will be conducted tomorrow. The purpose is to map out all of the cancerous tumors throughout her body. I’m not excited to see all of them. What I want is for them to be gone.

8. Faith and prayers - Afton has been the object of so many personal prayers, group prayers, prayer meetings, fasts and prayer offerings. We are so grateful. We feel like we have witnessed a miracle in the preservation of her life. When we first arrived and her symptoms were spiraling out of control, the doctors gave us the “there is only so much we can do for her" speech. I know that they give the same speech to all patients whose conditions are worsening but I don’t think they had much hope for her survival. We were petrified as well. Honestly, we still do not know exactly what will happen. There are so many unknowns. However, we feel that we are finally moving in a positive direction. We are so relieved. Most importantly, we feel sustained by the thousands of prayers being offered on behalf of Afton and our family. We have never felt abandoned by God. In fact, we have felt His constant companionship and we are most grateful.

9. Sunkist Swim Team and the Stamm Family Invitational - The winning team at the big swim meet held in Vicksburg this past weekend receives a $500 cash award. This year the Sunkist Swim Team from the Madison and Flowood area in central Mississippi won the meet and the award. Unbelievably, they donated the entire amount to help fight Afton’s cancer. We are just blown away by this incredible gesture. Thank you Sunkist for making such a gift.

June 1, 2014

It is Sunday morning very early. For as long as I can remember I have always loved Sundays and the chance to go to church. I love talking with the other members of the congregation and finding out how they are doing and making sure people feel welcome. I have also loved organizing and participating in service projects to help benefit people. In many respects I feel on the other end of that welcoming feeling now. We have been so touched by all of the expressions of love and concern. We know that many of you are either donating or helping to gather donations on Afton’s behalf and others are organizing blood drives and offering to take the children, etc. It is, as Norm Jones put it, inspiring! Thank you.

My Ph.D. advisor always instructed me that the best way to organize your thoughts is with an outline. My version of that organization is a list so you will see most of my thinking and writing organized this way.

1. Blood. Afton received her first blood transfusion yesterday on Friday evening. Normal hemoglobin levels for someone Afton’s age are around 12 g/dl. Because of the chemotherapy, her levels had dropped to around 7 g/dl. This was anticipated so they gave her a transfusion of red blood cells. While there are some risks with blood transfusions, there are far more benefits. We noticed her energy level and coloring improve dramatically. So, thank you to all those who donate blood.

To that end, the ERDC has a regularly scheduled blood drive plannedTuesday, June 3, from 8:00 a.m. to 4:30 p.m. in the CHL Conference Facility, Room 495, Bldg. 3200. If you wish to donate blood, you can do so in Afton’s name by using the code DH41. You do not need to have the same blood type as Afton to donate. It is very unlikely that she will receive your
blood. She simply receives credit for the blood you have donated. For those of you who do not work at ERDC, there are people working to organized additional opportunities to donate blood.

2. Radiation - Afton received her 2nd and 3rd radiation treatments on Friday. As I mentioned previously, these treatments have restored partial movement of her left leg and toes and halted further degradation of her speech. However, radiation is only a partial solution.

3. Chemotherapy - The first round of chemotherapy we received was not normal because of the emergency radiation that was required. We will go back on the normal schedule Tuesday. Not pleasant but Afton is enduring it well.

4. Gastrointestinal - functioning properly again

5. Visitors - Despite being seven hours from Vicksburg, we continue to be blessed with visitors and attention. On both Thursday and Friday when things were at the very darkest, Samantha Bradley Stone drove up from Huntsville and stayed with us for hours. Simply sitting in the waiting room with someone to talk with was wonderful. On Friday evening, Afton’s aunt and uncle (Sheri’s sister and brother-in-law) arrived from Indianapolis with their four children. While the visits were very short, Afton loved having the attention of these beautiful little girls and their brand new baby brother. On Saturday, Deanne spent most of the day helping Sheri decorate the room with photographs. The room feels very much more like a home away from home. I went hiking with Nick and the kids on the Warner Woods trails here in Nashville. It was beautiful. I like Nashville!!! On Saturday evening Adrienne Eckstein and her son Luke stopped by on their way to visit Cornell and other universities in the Northeast. Luke’s sister Adrienne is one of Afton’s swim team buddies and it was fun to have them visit. Again, the time in Afton’s room is very short but we are so glad they stopped on their way through.

6. Children’s Miracle Network - This weekend is the fund drive for the children’s miracle network (CMN). This organization links together the fundraising efforts for hundreds of children’s hospitals from all over the country. On Friday I was doing a little shopping for Sheri and someone noticed the hospital wristband that I wear and asked about our situation. Another person in the store overheard our conversation and indicated that she was the CMN coordinator for Vanderbilt. After more discussion she mentioned that she helps to organize a swim-a-thon with the local swimming teams where people donate a certain amount of money per yard the team member swims. The teams swim as many laps as they can, the sponsors donate money which goes toward the local children’s hospital. We brainstormed a little and we are going to try and organize a swim-a-thon competition in Afton’s name between the teams in the Nashville area and those in Mississippi. I will keep you all posted as this idea takes shape.

7. Temples and worship services - my niece Erin contacted every temple in the United States and Canada (90 total) and placed Afton’s name on the prayer rolls. Thank you Erin. In addition, most of my siblings and Sheri’s siblings went to the temple closest to where they lived and united their faith with others on behalf of Afton. In addition, many of churches in Vicksburg are holding special prayer vigils and meetings for Afton. We feel immensely blessed by your combined faith. Thank you!

We love you all and are so very grateful to each of you for your support.