Interview with Stephanie, BJ’s mother.

Margaret: My guest today is Stephanie Abney of Mesa Arizona. She is a fourth grade school teacher at the American Leadership Academy. She is married to Jim, her husband of forty years. They are the parents of five children – four living. They have seventeen grandchildren. Their oldest child is their daughter Shannon, next is a son Matt, and then daughters Mandy and Kaci. (Their ages range from 27 – 37) Brian James Abney (BJ) passed away shortly after his sixteenth birthday. I met Stephanie when I joined ANWA (The American Night Writer’s Association.) She is an amazing woman. Stephanie, will you please tell us about BJ?

Stephanie: BJ, Brian James Abney was born Sept, 5, 1984. He was a beautiful blonde blue-eyed boy. He was always my healthiest child until he was diagnosed with cancer. He was lots of fun and had a great sense of humor. He was an incredible athlete – he wanted to play pro baseball and probably could have. He loved people and everyone was always drawn to him. BJ was known on campus as a gentleman, always holding the doors open for the girls, always encouraging everyone. He was charmer. He loved to work with his hands. He was very creative and innovative, always “improving” things. BJ loved woodworking and he was quite good at it. He loved music, nature, especially birds and reptiles, and his family. He loved the Lord.

Margaret: When was BJ diagnosed with cancer?

Stephanie: In 1995, at the age of 10½, BJ suddenly became feverish, clammy and threw up (he had just returned from a fishing trip with the neighbors and we thought he had heat exhaustion). After three days with no improvement, we went to the doctor who took one look at him (totally pale & weak), felt his spleen, did blood work and immediately sent us to the hospital.

Margaret: What was the diagnosis?

Stephanie: A.L.L.: Acute Lymphoblastic Leukemia

Margaret: How long did it take from the first time something different/odd/or wrong was noticed until you received the diagnosis?

Stephanie: BJ had what was referred to as “rapid onset” – one day he was healthy and playing baseball, the next he was sick. He complained of not feeling well on a Sunday, I cared for him at home for three days, called the doctor, went in the next day (Thurs) and went straight to the hospital – they gave him immediate blood transfusions (which saved his life) and ran tests and gave us the A.L.L. diagnosis on Friday – so in less than a week our lives were forever changed.

Margaret: What signs or symptoms had you noticed that brought you to seek care?

Stephanie: Fever, clammy, throwing up, extremely weak and pale. By the time we made it to the doctor, his lips were completely devoid of color.

Margaret: What kind of treatment was recommended?

Stephanie: Chemotherapy was the first treatment recommended.

Margaret: Did you seek a second opinion?

Stephanie: Yes, we even changed doctors and hospitals in the process = we ended up at Phoenix Children’s Hospital with a remarkable doctor and we were very happy with the change.

Margaret: Did you feel the diagnosis was correct?

Stephanie: Sadly, yes, it was clearly cancer. On the outset he was given a 55% chance of recovery. He was in treatment for 5½ years. Part of the time he was “said” to be “in remission” but he still was on maintenance doses of oral chemotherapy during that time. Some rounds were aggressive and he lost his hair, gained what I called those fat little “chemo cheeks” from the Prednisone; other times he threw up all the time and laid around. He did enjoy some good times where he played ball, attended church, school, scouts and even earned his Eagle Scout Award. However, he “relapsed” and the leukemia cells were found in his cerebral-spinal fluid (this time we were told he had only about a 30% chance of survival) and a new, more aggressive round of intravenous chemotherapy was begun as well as daily radiation to his brain and spine for five weeks. BJ eventually rallied and had a good year or so when he started complaining of pain in his hip and knee. He also had a chronic eye infection. Due to his blood tests staying in the “normal” range during this time and his energy and physical strength remaining basically strong, these warning signs were missed. We were finally sent in for an MRI for the hip pain and also to UCLA medical center to have a specialist check out his eye infection around the same week. Both resulted in a confirmation that the leukemia cells were back – in his bones and in his eye – wasn’t really an infection. So, this time, he was offered a different round of aggressive chemo with only a 5% chance of recovery. He was never a good candidate for a bone marrow transplant (although we were all tested for it) because he had Valley Fever, a fungal infection and fungal infections are common and can be fatal in dealing with bone marrow transplants. At nearly 16 years of age, having enduring one level of chemotherapy or another for the past 5 years, BJ opted to not take the treatment. He just couldn’t face going through all the aggressive treatment again for less than 5% chance of survival (and neither could we for that matter). We totally supported him. This was in late April of 2000. The doctor told us that we were looking at only about 2-3 more weeks with our precious child. He told this to BJ as well. The doctor said he would do all he could to keep BJ comfortable, but that was about it, since he was refusing additional treatment. However, BJ lasted over six more months (his gift to us, I truly believe) during which time he ended up going to Boy Scout camp, his brother’s house in West Virginia for a visit (although he returned much weaker after just two weeks), and even made it to his grandfather’s funeral in California. However, by mid-August, he slowed down so much that he was basically bed-ridden until he passed away in November. (Also, during the time he survived beyond the doctor’s predictions, both of his grandfathers passed away, as did his paternal grandmother – his maternal grandmother passed away a couple of years before he did). It was almost as if he was waiting for them to all be on the other side to greet him.

Margaret: Did you seek any alternative healthcare?

Stephanie: Yes, we also did every type of nutritional support we had heard of and could afford. He also saw chiropractors, body workers, nutritionists, herbalists… we tried the suggestions found in “The Cure of all Cancers” book and other self-help cancer books. If it was out there, we gave it a shot. He drank all kinds of crazy concoctions, tried eating special diets, drank fresh-squeezed juices, etc. We left no stone unturned. But the Lord was determined to take this young man back home.

Margaret: During the course of treatment was there any particular health care person that seemed to help more? What was it they did that made the journey easier?

Stephanie: We had an exceptional team in the members of the Children’s Cancer Center – our doctor, Dr. Michael Etzel, was phenomenal, as was all of his staff. We loved the “Child Life” personnel and the nurses at the hospital and the counselors and nurses at the clinic. We received excellent care and support. I could tell you amazing stories of service rendered by our friends and even friends of friends whom we didn’t even know that held us up during this time. Their love and kindness wrapped around us like a comfortable worn quilt to keep you warm during the cold and dark hours of the unknown storms of life. No one goes through this life alone and each life touches another’s. That is one of the gifts that we took from this experience and we hope we can pass that along to someone else whose life has been forever changed by the unexpected illness of a loved one, particularly a child.

Margaret: Was any financial assistance needed to pay for treatment? What organization/s helped?

Stephanie: We were lucky to have pretty good insurance, but even still, the bills were astronomical. The Leukemia Society sent us a small amount each year (don’t recall – a couple of hundred dollars, I think). Mostly, it was our incredible friends who set up fundraisers and the kids from BJ’s school raised money and remarkable friends and family would contribute something just when we needed it most, from a vehicle to services, and finances. But their greatest contribution was their constant love, prayers, concern and support.

Margaret: What role did your faith/religion play during this time in your family’s life?

Stephanie: Faith and our religion (LDS – The Church of Jesus Christ of Latter-day Saints) played a huge role during this time. We felt at peace throughout the entire experience, even though BJ did not survive. We have a very large, very faithful extended family and wonderful support from our church members and our neighbors. Amazing acts of service were performed that could fill a book. Knowing that the Lord was mindful of us and that He has an eternal plan for each of His children helped us get through this experience.

Margaret: How did your child’s illness affect your family?

Stephanie: In many ways, BJ’s illness drew us closer together. It was a trying time and a sad time but we also have lots of great memories during those years.

Margaret: If there was a “do over” chance what would you change or do different?

Stephanie: Hard to say. I really think the Lord needed BJ on the other side and nothing we could do would change that.

Margaret: Please share anything that you feel might help another family in a similar situation.

Stephanie: Sorry, Margaret, I don’t have time to share all of that. I don’t even know what all I would include – each circumstance and each family is different. I guess the one thing that is common that I would share is that you can get through things you never thought you could and that WE aren’t in charge in this life and the sooner you come to terms with that the better. Also, to be patient and kind with one another as every family member will deal with this type of thing differently, even on a day-to-day basis. Our daughter, always known for her sunny outlook, wrote as essay in her high school creative writing class while BJ was sick, entitled, “My Happiness is My Armor” – I had no idea about that until she wrote it.

Margaret: Did your family receive hospice services?

Stephanie: Yes, from late August 2000 until BJ passed away on November 8, 2000 we received hospice services from “Valley of the Sun” and they were fabulous. We are very grateful for their help and support.

Margaret: Does your family do anything special on the anniversary of your child’s death to remember him?

Stephanie: On BJ’s birthday we get a professional cake that says “Happy Heavenly Birthday, BJ” and we usually put the age he would be if he were here and we have all the family over and we talk about the good times and watch videos of him, etc. We usually go to the grave around that date as well. We do almost the same thing on the anniversary of his death but without the cake.

Margaret: Do you keep in contact with any other patient’s families that you became acquainted with during the struggle with cancer?

Stephanie: Only one.

Margaret: If there was a “do over” chance what would you change or do different?

Stephanie: I would have taken more pictures and I would have kept a better journal of everything that was happening.

Margaret: At an ANWA retreat several summers ago you shared the story about BJ and the Native American Flute. You played us some songs. Music has been a huge part of my life. Could you please share that part of BJ’s life with us?

Stephanie: When BJ was around 11, his older brother introduced him to the Native American Flute. In fact, they used to make simple flutes out of bamboo and sell them for a few bucks for spending money. Both Matt and BJ seemed to be able to just put the flute to their lips and beautiful music came out. Not all have that gift, but they did.

When BJ was on the last leg of this journey, a friend, who plays and makes Native American Flutes brought his son over and he played the flute for BJ, who was very ill at this point. Our friend, Lenny, was so touched by this experience that he wrote about it to on online group of Native American Flute players, flute-makers and flute lovers, called the Flute Spirits. He told of BJ’s battle and included his name, age, and address. Within days we were flooded with cards and letters and CD’s of flute music. It was so healing for BJ to listen to that music and he was so touched by the outpouring of love that these previous total strangers would show to him. It really boosted his spirits and meant so much to all of us. To this day I am still in touch with the Flute Spirits and have made several life-long friends as a result. They were so loving to BJ. A couple of things that stand out are that soon after BJ received all the CD’s and cards, someone from the Flute Spirits gifted him with a beautiful hand-made flute. BJ hated how the morphine made him feel and he opted not to take it most of the time. Instead, he would play his Native American Flute to distract him from the pain. It was one of the last flutes ever made by Hawk Little John, a famous flute-maker and player, as he was suffering from cancer the same time that BJ was and he passed away a few weeks after BJ. Nevertheless, Hawk Little John took time to write BJ a personal letter about being flute brothers and about being strong during this time. It was very beautiful and gave BJ a lot of strength.

Margaret: Thank you so much Stephanie! I appreciate you taking your time to share these precious memories with us. I hope that they will help others when they come to a time in their lives to make decisions and need assistance with similar situations.