Wednesday, May 26, 2010

What do you expect

When you put the nine month old in charge of blogging, you can only expect a month going by with nothing entered and a whole lot of drool on the keyboard.
I suppose I shouldn't bestow unearned blame on my children, despite the kick I get out of it. In all honesty, life has been feeling (dare I say) more "normal" lately. I've already dictated several blog entries in my head, but life has become BUSY and I find myself distracted with other priorities. I took my doctor's very blunt orders to stop having children and did something about it. I find myself in slow recovery mode again, but with the added benefit that Amanda is doing great and doesn't require the intensive care as she did before. She had clinic today and I told the doctor that she's had her best month in over 18. She's even sleeping better. The doctor told me that the last intense treatment round (which was last October for Amanda) is so hard on the body that it takes a good 6 months to bounce back. This month has given me a glimpse of the energetic, creative, curious, and playful person that Amanda really is, and the hope that it might be part of our life once again. It's nice to have back. During clinic there was a child Amanda's age, new to treatment, screaming at the top of his lungs about how he did not want to be there! It choked me up - it's hard to see. Amanda was the same way at the start of treatment. Clinic days ringed of frustration and fear. I am so grateful to be where we are at in her treatment and to see her strong resiliency. It's a lot easier to have hope now.I really have three beautiful, wonderful children. I'll have to remind myself of this often during roid rage week!

Saturday, May 1, 2010


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.