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.