ONE YEAR AGO

Amanda age 8 - April 2009

"Did you know it was all going to go so wrong for you?"
- Pink Floyd

Yesterday was Amanda's one year anniversary for being diagnosed with Acute Lymphoblastic Leukemia. There are so many thoughts in my head that I can't even begin to figure out what to say. I thought I'd highliht some pictures from a year ago. I asked her what she thought about her one year mark. She said, "It's been hard but worth it."

So often I am asked how I knew she was sick. I think as a mother you always know when your kids aren't quite right. But looking at these pictures you can see that despite being sick she still happily lived her life. Six months before she was diagnosed she started having a lot of migraines, was ornery, and seemed fatigued. Over time she started loosing her appetite, was constantly pale, and slept more than usual. At the end of February the headaches turned into almost daily fevers and she developed bone pain throughout various places. At this point I knew something was very wrong, but it took two months of doctor's appointments and a week long hospital stay to diagnose her. The cancer was undetectable by standard tests as it had not spread past her bone marrow. It took a bone marrow biopsy to confirm it. Her doctor said that the cancer was packed in there so tightly that she could hardly get a sample out. I'll never forget that day. It was a terrible day.

Equally difficult was the following day. We found out our baby had stopped growing and was dying. The doctor told us to have an abortion. I left his office to go meet with Amanda's doctor to start chemotherapy. The feelings of those two days are too difficult to describe. I was on IV's myself and so sick and run down from my pregnancy. I could barely take care of myself, let alone my children. I had just found out I was getting laid off from my job while carrying the health insurance and Erin had just qualified for early intervention. Everything seemed impossible to face. I will forever be grateful to family and friends for picking up the pieces of our shattered family at that time. One year marks are a funny thing. They flood back memories and give you that permission to reflect. Time slowly heals the wounds.

A year later my kids are still recovering from various flu bugs,ear infections, and cancer treatments are still a struggle. It's better, but still a struggle. Amanda had clinic this past week. She woke up from a lumbar puncture and screamed in pain whenever she sat up. I hated that she had to experience the pain, but glad the nurses were able to observe what I've been describing for months now. It fortunately triggered some extra help from her doctor and we now have a different game plan for the next LP. Cancer and chemotherapy still rule her life. She roid-rage screamed for two hours yesterday about all the activities she misses. She has every reason to complain. It is still a challenge. But she said it best, it is worth it! Her cancer is curable and every day we are one step closer to that cure.

Amanda the day of her baptism, February 28, 2009. The following day her fevers began.

A month into Amanda's fevers - I was four months pregnant and on a PICC. Nobody in this picture was well. This was our first family outing after months of me being in bed, and it was our last outing before Amanda was diagnosed. It's hard to look at this picture now because deep down I knew something was very wrong with all of my children, but was too sick to do much about it.

Amanda was hospitalized a few days after this picture was taken. I think this picture shows what leukemia looks like.
I took no pictures while at the hospital. I had too much of my own medical equipment to pack and frankly, I just didn't feel like capturing the moment. Thanks for the pics Teri. Knowing that Amanda's cancer is curable made moving forward with treatment more manageable.