Carley's journey to cure Aplastic Anemia

Hi I’m Barbara, Carley’s mom. Her dad Rob and her step-mom Shannon and I would like to share our daughters story with you. Seven years ago, our daughter Carley, then only 15, was diagnosed with Severe Aplastic Anemia, a very rare bone marrow failure autoimmune disease. It's a disease where the body severely reduces or completely stops producing blood. Untreated, it is life-threatening. To date her treatment has required an elaborate and frequent cocktail of many drugs, a highly restricted diet, continual monitoring of her blood supply, and the ongoing effort to manage the stress all this entails.

Carley responded pretty well to her initial treatments. After about six months of intensive care efforts she was able to return to high school and a somewhat “new normal” life; one that now included the constant 2x daily medications and weekly lab tests. A year later she was determined to be “in remission”! At that time it appeared that was to be her routine for the rest of her life. However, 12 months ago her blood numbers once again began to decline. And they have remained declining despite all efforts. They have decreased so much so that this past January her hematologist in Ventura recommended that we begin to investigate a Bone Marrow Transplant and to seek a specialist.

Through help from a dear friend we were fortunate to begin discussions in February with the experts at City of Hope in Los Angeles. We were told that at this time a bone marrow transplant would be the best option for Carley, if a donor match could be found. And while these outcomes are never certain, if the transplant took perfectly and completely, she would actually be cured and could look forward to almost a truly normal life.

We are incredibly fortunate to have identified a couple donors who are a very high compatibility match. So we do need to move quickly. One of the many challenges in this process is that there is a very strong probability that the chemotherapy treatment will leave Carley sterile. Because of this Carley has decided to have some of her eggs extracted and frozen, so that she can still look forward to having a baby in her future life. Once that is done, she will be admitted to the City of Hope and spend a full month there, getting her body prepared (via chemotherapy) to receive the new bone marrow material, then spending about three weeks after the procedure recovering to the point where she can take meds by mouth, and be able to leave the hospital.

From there, Carley and I will move to an extended-stay hotel near the hospital for a period of 3 to 6 months while she continues her recovery. During this time she will need around the clock care, extensive rest, protection from infection sources, and she will have to visit the City of Hope twice a week for testing, monitoring and evaluation.

By February of next year, with the grace of God and your help, Carley will emerge from that hotel like a butterfly from a cocoon, transformed internally into a renewed healthy young woman. Her outside will be coming along, too, with her hair starting to grow back and normal color returning to her cheeks!

Despite family help with expenses where possible, we still have to turn to a wider circle of support to get through this financially. Carley will require around-the-clock care for a minimum of six months; consequently, our ability to generate income will be severely restricted at the same time of additional expenses from living away from home during this entire process.

One-third of our goal amount is the immediate expense of the egg harvesting procedure, which has to occur before she can be admitted to the City of Hope. After that, another third will pay for the hotel stay of three months, and the final third will cover the remaining expenses like food, phone, medical incidentals, and some recovery of lost income.

The abstract idea of a bone marrow transplant cure has suddenly transformed into an immediate reality, such that we can’t even do the normal thing of waiting to collect money before starting to rack up the expenses. That’s a luxury of time that we just don’t have. So we press ahead, and hope that you — so many of you, who know Carley and her family or others in my family — will find it in your heart to help her finish her journey to the cure at last.