Evans Syndrome Community Network: July 2012

Saturday, July 21, 2012

Conner's Story

contributed by Amanda Ballesteros

Conner Ryan Lloyd 1999 - 2012

I would like to share with others the story of my Angel, Conner Ryan Lloyd, in the hope of helping others struggling with Evans Syndrome, and to let them know they are not alone.

My son was born a healthy 8-pounds 9-ounces on September 12, 1999. He was a perfect baby and always happy.

In 2004, our lives changed forever. Conner started to develop bruises almost overnight. Some thought this was a case of abuse, and an investigation was opened. We ended up at Primary Children's Hospital in our hometown of Salt Lake City, Utah.

After undergoing blood tests, we discovered Conner had ITP. He was given an infusion of IVIg, and I thought everything was going to be OK.

A few months went by. Conner developed a cough. I took him for a check up, and they found his hemoglobin (red blood) was low. We went straight to the hospital for additional testing. After the bone marrow biopsy came back negative for cancer, we were able to sigh relief. The blood test came back Coombs positive, and the disease rare: Evans Syndrome.

Conner was in and out of the hospital every couple of months for mostly minor low blood counts, and he always responded quickly with a treatment and prednisone. It was difficult for our family to adjust to hospital stays and treatments, but after a while we adjusted to the situation knowing it would be a chronic illness.

Eventually we decided to give rituximab a try. Conner went into remission for 8-9 months at a time! My son was actually able to live a normal, healthy boy's life.

In May 2012, Conner wasn't feeling well. Stomach pains, anemia, and fatigue. We were admitted into the hospital. After 11 blood transfusions, IVIG, 500 mg prednisone, Cellcept, rituximab, and a splenectomy, Conner lost his battle with Evans Syndrome. It was June 8th, 2012. His kidneys were very stressed and not able to release all the toxins from treatments, and his potassium count rose to a level that stopped his heart.

A parent never prepares themselves enough to lose a child. I honestly did not think Conner would have passed from this disease and its complications of treatment. I don't know if there was another underlying disease that he may have had, but the pain that Conner suffered is now over. May he rest in peace.

Conner wanted to be a doctor so he could help other kids going through a chronic illness. I believe sharing his story is a way of helping him achieve this goal. He is an amazing, brave, and dearly missed little boy.

As part of the Evans Syndrome Community Network, I have met some wonderful families in support of raising awareness and promoting research on autoimmune blood diseases including Evans Syndrome. I want to be a part of the support that families and individuals need when suffering from this illness. I want my son's name to always be remembered. Hopefully his story helps another.

Amanda Ballesteros

Mother of Conner Lloyd 09/12/1999-06/08/2012

Wednesday, July 11, 2012

Our Family Vacation

contributed by Janet Shull Shepherd

Our journey began four years ago when Brenna was 10 years old. She had a bad virus which resulted in hemolytic anemia. She was hospitalized, given blood transfusions and steroids. Doctors assured us that it was a freak thing, and that it would never happen again.

Fast forward--two years later...Brenna was 12 years old, Zach 16, and Jared 9. My husband and I took the kids to a beach for vacation that August. Brenna started to have bruises pop up, and purple dots on her legs, arms, and the inside of her mouth. She also started her first period, and was bleeding heavily. We took her to an urgent care clinic and they sent us for blood work.

The doctor called our rented condo and told us Brenna's platelets were 2,000, and her hemoglobin was 5. He told us to go to the nearest hospital, and that we would be transported two hours away to a children's hospital. I went into shock and started packing up our clothing for the trip. My husband drove us to the hospital. We went on to the children's hospital, and Bill went back to the condo to stay with the boys. We were about 11 hours from home, and I had no idea what was really happening with Brenna. I just knew it wasn't going to be good.

Once we arrived at the children's hospital, they started two IV lines to give Brenna blood, platelets, estrogen, steroids, and IVIg, plus some other things to try to stop the bleeding. She was hemorrhaging: It was more blood than I had ever seen. The doctors said she lost all of her blood volume.

To make matters worse, my youngest son had a seizure that same night. He'd had one other seizure the year before. When my husband called and told me about Jared's seizure, I broke down.

My parents drove down and picked up the boys. Bill came to the hospital to be with Brenna and me. It was 6 days before Brenna was stable enough to make the trip home.

Brenna remained on steroids and was repeatedly hospitalized for IVIG and other treatments before she went into remission three months later. She missed 67 days of school that year. Our lives had become a living nightmare, and we have been riding a roller coaster ever since.

Brenna was diagnosed with Evans Syndrome and Lupus. She has chronic hives, chronic fatigue, and is frequently too dizzy to function. She has also developed depression and anxiety issues. She is very worried about starting high school this year, and missing days due to being sick. This is so overwhelming at times, and the worry and stress I have for her consumes me. I try to stay positive on the outside, but seeing my daughter suffer tears me up on the inside.

I keep all who are suffering with Evans Syndrome and Lupus in my prayers, and pray that there will someday be a cure for autoimmunity.

To parents who are dealing with this: I think our strength just comes from God, as difficult as it is at times we have to be strong for our children. We can curl up and cry when we are alone, but when we are by our childrens' sides, by their beds, in hospitals, during doctors appointments, we have to be their advocates, their rocks! Stay strong--You're not alone!

Monday, July 2, 2012

My Story

contributed by Kim Wright

It was 2005. I had flu-like symptoms, was very lethargic, feeling sick. I also had a terrible headache. No matter what I did, I just couldn't get rid of the headache. After five days of laying in bed in agony, my mum said enough was enough, and called for my GP.

The doctor came to my home and tested my urine for possible pregnancy, but that was negative. My mum is an insulin-dependent diabetic, so the doctor also tested my blood sugar levels. This revealed I was slightly hypoglycemic but that was because I hadn't been eating for several days. After the tests, my doctor rang for an ambulance, as I was on the verge of losing consciousness.

At the hospital, I had more blood tests, and was placed in quarantine: Originally they suspected meningitis. They put me on 100 mg of prednisone folic acid, as well as a vitamin tablet. That's when I met my haematologist, Dr. Watson. He came out of semi retirement because I was a cause for concern.

Four days later, I was moved onto the hospital's blood ward, where I was told I had a condition called autoimmune haemalytic anemia. My haemoglobin had dropped to 2, which is what caused the headaches. I was given five units of blood.

I remember this as a very distressful time. I broke my ankle three weeks prior, so I was still recuperating from that when I was in the hospital. To this day, I suspect the trauma of breaking a limb triggered my Evans Syndrome. I was given morphine for pain, and my condition was downgraded, but when I tried to go to the bathroom by myself I collapsed. There was not enough blood to circulate through my body. The second time it happened, my heart had to be restarted.

After three units of blood, I started to feel a lot better, and was sent home after 9 days on 80 mg of prednisone. When I returned to Dr. Watson for my follow-up appointment, he told me that I had Evans Syndrome.

In June of 2006, my platelet count dropped dramatically. I bruised at the slightest touch, and my menstrual period was unusually heavy. Dr. Watson put me on a treatment called rituximab. Thankfully, I responded.

In November of that same year, I miraculously fell pregnant. The baby was due in August of the following year. However, not long into the pregnancy, I was told by a doctor that I should consider terminating my pregnancy: The effects of rituximab on the unborn were unknown, and my child could end up with disabilities.

I didn't even have to consider the possibilities: I would continue the pregnancy and give my child a chance. I gave birth to a perfect baby boy weighing 6 pounds 9 ounces, 6 days overdue, by c-section. We will celebrate his fifth birthday this year.

I have been on and off steroids now for 7 years. I have been given somewhere around 40 blood transfusions. Personally, I have found Azathioprine to be the best treatment for me. Currently, I'm on 200 mg daily, with no side effects.

I do suffer in other ways: I have irritable bowel syndrome, rheumatoid arthritis, and I battle with my weight because of the steroids. Sometimes I get very tired, but I'm still up-beat, and I don't let this get to me.

The main thing is that I'm alive. I don't worry about relapse, and I pray for treatment success…I don't think I would be human if I didn't. I fight…and I win.

In between all of these years, I contracted Legionnaires Disease. I was in intensive care, and was left with weakness in my left lung. I am now prone to chest infections, which lead to pneumonia. I always have back up antibiotics at home, as infections seem to be a main cause of allowing my platelets to drop. I've learned the signs, and I'm quick to react.

I owe Dr. Watson a great deal. He is not just my consultant: He and the members of his team are my friends. I can turn to them any time.

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