May 30, 2014

This morning it is a great day. Afton is able to move her foot and leg again and her speech is improving. It appears that the emergency radiation treatments have provided some relief from the tumors that were causing the most significant problems. We still have not had a bowel movement in days so we are not out of the woods yet. However, I hope we have reached the very bottom of the negative trajectory and are starting to see positive results. We are grateful for your love and prayers on Afton’s behalf.

What a past 24 hours it has been!

1. Visitors - many thanks to Stan and Kristi Gwin for driving all the way from Hattiesburg to come and visit. They brought Caroline and Cami Thompson who previously lived in Clinton as well as their son Jace, who swims on another team but knows Afton from both swimming and church. Many thanks to Samantha Bradley Stone who is going to school in Huntsville and made the two hour trip to spend some time with us. It was great to see familiar faces. The relief society president from the local ward also came to visit and to assure us that the local church members here in Nashville were praying for us and would help out in any way. I have loved the outpouring of offers for support from both the local Vicksburg residents as wells members of the church and others from all over. We feel very blessed. I attribute it to Afton’s ebullient personality!!!

2. Radiation - thank goodness for George de Hevesy and the Lawrence brothers (John and Ernest) who first conceived of the idea to use radiation as a treatment for disease back in the 1930’s. Tumors attributed to Ewing Sarcoma are typically very responsive to radiation. However, they usually wait to use radiation treatment near the end of the cancer treatment cycle because there is a lifetime maximum amount of radiation that a body can absorb. In Afton’s case, the speed in the growth of the tumors, forced the doctors to accelerate their plan and use radiation treatment to reverse the loss of movement in her leg and her speech and swallowing problems. How glad we are that they did. For the first time in a while we are seeing an improvement in conditions. We are not finished with this fight but hopefully this emergency treatment will give us time to allow the chemotherapy to work at reducing and eliminating the other tumors in her body.

3. Scissors - in preparation for Afton most likely losing her hair, both Afton and Kaylynne decided to cut their hair and donate it to "Locks of Love". Thank you Kaylynne for being willing to sacrifice your amazingly long and beautiful hair in tribute to your sister. Afton looks beautiful with her new hairdo.

4. Bowel Movements - Not to be crass in any way, but you just never realize how important using the bathroom is until you can’t. We are now praying for a proper poop.

5. Blood banks - thank you to everyone who has ever or will ever give blood. Afton is receiving her first transfusion today because her red blood cell count is dropping from the chemo therapy. We have been asked about organizing a blood drive on Afton’s behalf. We will be doing so and providing that information shortly.

6. Religions - I have always been a student of other religions. Especially when I was serving on my mission, I spent a lot of time finding commonalities between denominations rather than differences. I love the various ways people express their faith. Thank you especially Telly for your beautiful and heartfelt prayers. The fact that you are praying as fervently for my child as you would your own makes me feel like you are an early expression of a heavenly angel. Thank you to the members of the many churches in Vicksburg of multiple denominations who are including Afton in their prayers, holding special meetings for her and in so many different ways appealing to God on her behalf. I love you all for your including my daughter in your appeals. I have no words to describe the feeling I have for you!

7. VSA - Swimming is not the best spectator sport. The
athletes spend countless hours alone, swimming back and forth with few to cheer them on. During a swim meet, there is typically lots of waiting around. There are dozens if not hundreds of heats and you can spend an entire day to cheer on your child for maybe one minute. However, the one characteristic of swimming that hooked us as parents on this amazing sport is that all of the athletes and parents are cheering for each other on rather than jeering against them. I love that. This weekend is the Stamm Family Invitational swimming meet held in Vicksburg. It’s the first Stamm meet in eight years that Afton will miss and that Sheri and I will not be there as well to cheer on our five swimmers as well as the rest of the VSA team members. I would encourage any or all of you to go to the city pool this weekend to cheer on these dedicated and amazing athletes. And while you are there, please throw in an extra cheer for Kaylynne, Abigail, Scott and Katie on our behalf!

May 28th 2014

28-May - First good news we have received in weeks. The neurosurgeons did a complete spinal MRI and while they found evidence of tumors on her brain and in the spinal area, the tumors have not compromised the boundary between the body and the brain or spine This is huge. this means that if the chemotherapy is effective at shrinking the secondary, tumors then we should see a drastic reduction in her symptoms and less likelihood of brain surgery. Also, the primary bone tumor should respond well to radiation treatment if the other tumors will shrink. We feel very grateful for any good news at this point and so we thank you for your support, prayers and good wishes.

Afton is still a very sick girl. She has lost tons of weight, has no appetite and hurts, especially near the tumor on her pelvis bone. Our prayers are still that the tumors will respond favorably to the chemotherapy and rapidly begin to shrink.

Some of you have asked how you can send cards or packages to Afton. Here is the address:

Vanderbilt Children's Hospital
Afton Wallace
Room 6744
2200 Children's Way
Nashville, TN 37232

Also, if you wish to send an E-Card, you can go to the following web address:

http://www.childrenshospital.vanderbilt.org/interior.php?mid=1985

Our oncologists are schedule to make rounds soon and hopefully we will receive additional information.

Thanks for all your support

May 27th 2014

27-May-2014 - Well there is good news and bad news. First the bad news. This cancer appears to be very aggressive and has spread throughout her body. In addition to the tumor we knew about in her pelvic bone and liver, tumors now appear in her liver, spine and skull. Those in the skull are the most worrisome. One is pressing on the top of the brain and the other near the pituitary gland. These are causing slurred speech and potential endocrinological issues. The good news is that because of the pathology done on the biopsy that was taken last Friday at St. Domonic’s, they have determined that they know enough to begin chemotherapy tonight. They feel that this cancer is in the “Ewing Sarcoma Family” which gives enough information for them to proceed. Typically they would wait for a complete diagnosis but in this instance they want to start immediately. Thank you Vanderbilt Pathology for so rapidly working to identify the cancer that is ravaging Afton’s body.

The side effects of this chemotherapy are significant. She will have terrible nausea and will most likely loose her hair but that is simply a cosmetic issue. Far more serious side effects include low red blood cells, low white blood cells and low platelets. While the platelet and red blood cells can be replenished through transfusions, there is little they can do to replenish the white blood cells. This causes the body to be very susceptible to germs and diseases. While this cancer is a treatable one, Afton’s case is very advanced so this chemotherapy treatment is not guaranteed. However, for the first time in weeks, we feel that Afton is actually going to be treated. We are all elated to begin the process of fighting this cancer, not simply watching Afton get worse. Yahoo!!!

The chemotherapy process works in stages. They will give her the chemo tonight and then they will monitor the response of the tumors. Based on how her body responds, they can adjust the drug combinations. Our prayer is that we will get the proper drug combination immediately and that her tumors respond by shrinking, rapidly. Each round of chemo is followed by a recovery period that allows the body to build back the white blood cells. The frequency of chemo treatments is based on how well her body rebounds. Again, we are praying that Afton’s strong body will recover more rapidly so that the chemo can be applied more quickly so she can recover.

All of this is very frightening. I feel like I have taken on three new graduate courses in one in biology, one in psychology and a final one in terrifiology. However, the Doctor’s and the nursing staff have been wonderful. Dr. Pastakia and Dr. Libes have been very patient, especially with me as I have drilled them for information. Dr. Ginger Holt has been very kind with her busy schedule and spent a lot of time making sure the staff had gone over everything with us. She fawned over Afton’s name and told us that she was also a competitive swimmer. We are grateful for the layers of doctors who are all working to help Afton recover. Our night shift nurse Morgan has been an absolute angel. We can’t thank her enough for all she has done.

Our Utah and BYU connections keep coming through, (it helps when you wear BYU T-shirts). Dr. Bingham (the endocrinologist) is a BYU graduate and he gave us is cell phone to call if we needed anything and Dr. Holt (the ophthalmologist, not related to Ginger) is from Price and although he is a Ute, we still were grateful for his help!!

We continue to be overwhelmed by the love and support from our Vicksburg family. The churches and prayer groups who have added her name to their prayer lists, the families who have offered to take our children with them on vacations, etc; You are all simply amazing. My mom is just blown away by the love and support that everyone has given. We are so grateful for the meals, the snacks, the cards, the gifts, simply everything. You all have been so astonishingly loving and we are ever so grateful. Thank you from the bottom of our hearts. In addition the organization and structure of the LDS church has been so well designed to support in these kind of situations. We have received calls from President Robinson who is the Branch President of the Young Single Adult branch here in Nashville. He immediately sent over his executive secretary (Br. Westover) to help me administer to Afton. President Robinson was so very kind. His daughter went through something similar a few years ago and he has been most attentive The bishop of the family ward in the area also called and instructed his relief society president to make contact with us to insure we were taken care of.

One of the things that has happened which we simply did not expect at all was that many of you have offered financial help while Afton fights this disease. We are simply blown away by these offers. We think that our Federal Blue Cross/Blue Shields insurance will cover most everything involved with her treatment. I have not had a chance to go over all the details but I am confident that our financial liability is exceptionally small and there are no longer lifetime caps that limits how much insurance will pay. Regardless of this, some of you have asked about making financial donations. To accommodate that desire we did set up a trust in Afton’s name where you can donate if you wish. We will use those funds to cover incidentals such as food and transportation and for the insurance deductibles. Once this nightmare is over and Afton is back to full health, we will donate any remaining funds to charities that focus on childhood cancer awareness and treatment. I will get the details of that trust fund in a future post.

Many of you have also asked about coming to visit. Let me explain our situation. We are located on the cancer wing of the children’s hospital. This is a limited access location where only two people are allowed in the room at one time. Further, because most of the children here are undergoing chemotherapy they have weakened immune systems and so no one with a cold or especially the flu is allowed in. Because of the limited access, it would be impossible to accommodate large groups of people like we had at St. Dominic’s. If you would like to come, recognize that only one of you can come back at a time (since Sheri or I have to be with her as well) and that the visits would be relatively short. We would welcome anyone who wishes to come and are grateful that so many of you have offered, I just wanted to make sure you all understood the limitations of visiting cancer patients. If you do want to come, please contact us so that we can coordinate times people may want to visit. It would be terrible if one of you came up only to find another person or group already here.

It is now early morning on Wednesday, 28-May. Afton continues to be very sick. The reaction to the chemotherapy was pretty tough. She threw up most of the night but is now (6:30 AM) resting with loud snores. William Butler, these are even better than the ones from the other night. We are praying that the tumors will shrink rapidly and that Afton’s body will be able to fight off this catastrophic disease very rapidly.

May 26th 2014

Today, 26-May, was a big day. We have finally arrived at the Vanderbilt-Ingram Cancer Center and the Monroe Caroll Children’s Hospital at Vanderbilt. The Vanderbilt hospital sent their LifeFlight aircraft down to Jackson and Sheri and Afton were able to hop on the Beechcraft KingAir 200 and fly directly from Jackson to Nashville. Their total time enroute was less than 2 hours. What a blessing. I drove the van through Birmingham to Nashville and it took about four times longer. I would have preferred to fly.

We made fun connections along the way. The flight nurse grew up in the same neighborhood in Alaska as I did. She went to East High School. Very cool. When Afton and Sheri arrived at the ER, one of the ER nurses tracked them down and said, "I've been looking for you." She is Bob and Sue Athow's daughter who grew up in Vicksburg and has been following along what is happening with Afton. It was very comforting to know that people are watching over us. More fun connection took place when one of the ER doctors saw Sheri's BYU t-shirt and mentioned that he grew up in Utah and then one of the Oncologists who is working on Dr. Holt's staff is also from Utah. We already feel surrounded by people who care about Afton's case.

Afton made the trip ok but when we arrived they started some of the tests immediately. They performed number of X-Rays, blood tests and then ordered an MRI of her back on Tuesday morning. We will also have the PET scan and then an x-ray guided biopsy of the bone. Hopefully they will be able to rapidly identify exactly which cancer Afton has and test the procedure to make sure it will work to cure Afton. I echo Telly Fields prayer that she posted on Afton's regular facebook page in which she asks, "That this cancer responds immediately and favorably to treatment such that the medical personnel are astounded and give You the glory and the credit."

know that we love you all and are very grateful for your love and support.

May 25th 2014

Yesterday, 25-May, was another gut wrenching day. The pathologist came and gave us a preliminary assessment that Afton most likely has a form of bone cancer named Ewings Sarcoma. The good news is that this form of cancer is treatable. The bad news is that in Afton’s case it has matasticized and spread throughout her entire abdominal region with spots in her liver, spleen, and other internal organs. It looks like the main cancer is in her pelvic bone but has spread to other bones as well. I share this with you so you all understand the hill that we have to climb. There are many dark days ahead but Afton is phenomenally strong and we have great faith in the power of the divine.

Today, 26-May, was a good day. I went to church in Vicksburg while Sheri stayed with Afton and hosted hundreds of visitors all day long. I’m not kidding when I say hundreds. At no time during the entire day was there less than 15-30 people in her room. We occasionally had to ask people to leave when the pain became too great or she needed to eat; but all in all she was exceptionally glad that so many people came to wish her well.

Church was fantastic. Br. Gary Holmes gave a marvelous prayer in which he thanked the Lord for both Afton and for the doctors who have taken the time at great expense to learn the art of healing. Br. Holmes just returned from his own cancer surgery and is not out of the woods yet. Thank you Gary for your tender testimony given through prayer. Sam Lance took over the meeting and in his special celestial way let everyone know how much he loves Afton. I was very grateful for Sam’s testimony. I felt the sweet embrace of the members of our ward as they opened their hearts and shared their testimonies.

Our next major hurdle is to get Afton up to Nashville. We originally thought we would drive with her in the back of the van on an air mattress. However, her pain has increased significantly in the past few days and has been difficult to control. The doctors and nurses felt it would be better for her to fly so Afton and Sheri will fly on the LifeFlight jet from Jackson to Nashville tomorrow afternoon. I will drive up to meet them. We will then check into the hospital up there and meet with Dr. Holt on Tuesday morning.

My understanding of the process is that they will then perform a PET scan and a bone biopsy so they can better define exactly which type of small blue cell cancer she has. Based on that pathology report they will then determine which chemotherapy treatment is the most appropriate. Our hope is that by next Sunday we are reporting that she has started chemotherapy and we are actually fighting the disease and not just masking the pain with medication. We will stay at the Vanderbilt-Ingram cancer center until they determine if the chemo is working properly. Our prayer has now shifted from finding what is wrong to finding the correct medication that kills this disease and allows Afton to live and recover.

Despite the terrible news about her condition and the immense pain she is now suffering, We have watched miracle after miracle take place as the proper doctor’s have been able to make room for her. We have also been accepted to stay at the Ronald McDonald house so that Sheri and I can trade off having a good nights sleep. The nursing staff here at St. Dominic’s has been so attentive. Jean and Sandy, you are angels.

Our LDS Church family as well as the entire Vicksburg community have been truly like family. People have literally taken our other children into their homes and treated them like their own. People have driven us home when the exhaustion was so overwhelming they thought we would not make it home safely. The Vicksburg Ward, the Jackson Stake, the Hattiesburg Stake, the VSA swimming team, the Warren Central High School faculty and Big Blue Band leaders as well as the Bowmar Elementary school faculty have been astounding in their love and support. We literally have had hundreds of people come to the hospital room to wish Afton well. Thank you for taking the time to come. I think the nurses on the 4th floor at St. Dominics have never had such a commotion as so many people have come to wish Afton well.

Fast for Afton

If you are at all able to do so, today we are uniting in a special day of fasting and prayer on behalf of my amazing and terribly sick daughter Afton. For those of you not of our faith, we believe in the ancient practice of abstaining from food and water for a time as we petition God for special blessings (Isaiah 58:3-11). Today, our local and regional church leaders have asked all of the congregations in the central Mississippi area to join in a special fast dedicated to Afton. We did not ask for this honor but are exceptionally grateful that hundreds if not thousands of people will be uniting their faith and prayers on Afton's behalf. If any of you who are not of our faith would like to join, we would feel equally honored. You do not need to go to an LDS church or any church for that matter to participate. Just simply abstain from food and water for whatever period of time your health and conditions will allow and during that time petition the Lord for whatever blessing you feel are appropriate. In many respects the LDS practice of the fast is similar to the more traditional christian tradition of lent where one gives up something in honor of Christ's redemptive power. While our traditions may be different I believe that the Lord answers the prayers of all those who appeal to Him and so as a particularly worried father who has done all he can do from an earthly standpoint to help his daughter recover, I invite all of you to now implore the Divine power of God on Afton's behalf. We love you all and are so grateful for the amazing outpouring of love and affection we have received on Afton's behalf.

May 24th 2014

Words cannot express how we feel. It is like a kick in the gut and a punch to the face. However, we are also immensely grateful for the love and support that we have been shown during the past 48 hours. It has been a whirlwind of emotions. After 8 weeks, 8 doctors and two ER visits we finally know what we are up against. I'm not going to lie, it is very scary. Afton Wallace is very sick. However, I believe in the miracles, and I believe in medicine.

The plan of action for right now is to spend the holiday weekend at St. Dominic's hospital in Jackson getting Afton's pain under control. On Monday we are transferring to the Vanderbilt-Ingram Cancer center to work with Dr. Ginger Holt who is a specialist in pediatric orthopedic oncology. We are waiting for the results from the biopsy that was taken on Friday, 23-May, to determine which direction to proceed with regard to treatment. Our prayer is that the cancer is a treatable one.

Despite the absolute frustration and feeling of helplessness that accompanies this type of discovery, we are immensely grateful for the small miracles we have seen along the way. Supreme thanks to Dr. Bill Johnston at Mission Primary Care in Vicksburg for his tenacity in trying to help us find answers. We are so grateful to Dr. Raul Vohra at the New South NeuroSpine clinic who patiently took the time to think outside the box as to why Afton was hurting so bad and made the discovery of what is going on. We can't thank Dr. Nick Crosby, Sheri's brother-in-law, enough for his relentless push in making arrangements for Afton's care.

We've met new friends including the imaging center at River Oaks Hospital, Sister Celestine, our beautiful Nunn at St. Dominic's who was so kind to pray with us and Dr. Nicole Cleveland at the St. Domonic's Cancer Center who fit is into her overbooked schedule and who has been so kind. We are also grateful for Dr. Ginger Holt at Vanderbilt who has agreed to work with Afton. We have yet to meet Dr. Holt but we are exceptionally grateful. Most referrals to major cancer clinics take weeks. For Afton it has have only taken 24 hours.

We want all of you who care about Afton and our family to know how immensely blessed we feel at the literally overwhelming outpouring of support we have felt from all of you. The Warren Central High School faculty who have worked with Afton to make sure she finished the 11th grade, the Bowmar faculty who have showered our family with love, my colleagues at ERDC who are taking over my duties so I can be at the hospital, Sheri's colleagues at Hinds who are doing the same, Laura Blaine Butler and Sarah Davis and Ryan Wilcox who dropped everything to come and be with Afton when they heard the news, our church family in the Vicksburg Ward and the Jackson Mississippi Stake who have been so understanding and attentive, David Wilcox for coming over to Jackson to drive me back to Vicksburg so I wouldn't fall asleep, Marisol Nava Byrd for just taking over the care of Abi, Scott and Katie, the Steven Steven D. Boone family who are watching over Kaylynne Wallace down in Destin, Kaylynne for giving up her room to Afton, Abi, Scott and Katie for loving their big sister, Chip and Marilyn Abbe for their love and care, and the literally hundreds of you have reached out by phone, text messages, Facebook posts, etc. You have all been godsends and we are so appreciative of your love and support.

For those who have volunteered to watch our children, we are so thankful. Just so you know, my mom is flying in from Utah on Saturday, 24-May, to be with our kids over the next few weeks so Sheri and I can concentrate on getting Afton to Vanderbilt. We are so grateful for mom in coming despite the pain she still feels from the death of my dad a few months ago. Thanks to Nathan Brown and to Delta Airlines for changing mom's flight so she could come here so quickly and to Slater Lynn Brown for allowing his grandmother to miss his graduation so she could be with my kids. Our families have been our rock and we could not face this without them. You are all superstars!

Afton is supremely strong in both mind and spirit. She is tenacious, thoughtful, strong, beautiful, smart, kind, funny and passionate about so many things. If anyone can fight this disease, she can. We love her and are so proud of who she has become. We have great faith in the Saviour and His power to heal. We pray that it is his will for this healing power to make Afton better. Whatever, happens, we are so grateful for the eternal bonds that hold our family together. We will keep you all posted as we learn and understand more. Again, thank you for all of your love and support.