Treatment for childhood leukemia is typically a 900+ day journey. Sometimes it might be less, and sometimes it might be more. Each child responds differently to various medications and procedures. That’s two and a half years of chemotherapy. For Lily, that will take her past her tenth birthday which will be in April of 2011.

I find myself wishing away the 900 days - wanting to get them behind us so that Lily can be restored to her healthy self again. In the past two weeks I’ve had enough of watching her suffer - I can’t imagine over two years of her going through the effects of this treatment - and yet, there is no other choice. Untreated, leukemia can kill a child in about two months. In just the few days leading to her diagnosis, we could see how quickly her health deteriorated. On Thanksgiving, she was pale and not feeling well, but she was still out in the yard turning cartwheels with her cousins and sister. Three days later, she could hardly move off the sofa as the doctors tried to figure out what was going on. Now she gets up and walks slowly to the bathroom and then back to the bed. The chemo and her body’s reaction to the chemo have worn her out.

As I was coming home from the hospital earlier today - tears in my eyes from having to sit helplessly nearby as she cried in pain - I wished for the 900 days to be over. I wanted this behind us and Lily healthy and happy again. Just blink and fast forward two years. This disease is so wrong. It’s unfair that a child should suffer like that - and it’s not just Lily. Being on the pediatric oncology hall so much the past two weeks, I see that there are many other children who are suffering as well. And I see children who have much more aggressive and advanced cancers than Lily. This morning a couple got on the elevator the same time I did and punched the button for the sixth floor - Lily’s floor. I asked them if they had a little one on the floor and they answered that their daughter, Tiffany, wasn’t so little - she was 17 years old. Tiffany was rushed here last night from Kentucky. They don’t know what her diagnosis is - just that there is a mass/tumor in her head. Each day, as I get to know more people on the sixth floor, I learn of more heartache and tragedy. I see babies, toddlers, children and teens fighting horribly cruel cancers. It can be overwhelming.

So my instinct was simply to wish it all away. Poof! Two years gone and this experience behind us. Then, I thought that perhaps I should look at it differently. Rather than wishing away more than two years of our lives - which I couldn’t do anyway - I could choose to look at it as an opportunity to really live life and to savor every aspect of it. I certainly won’t savor the suffering, but maybe if I keep looking at the suffering as a necessary hardship to restore our Lily to health, then maybe I can bear it. Because it’s the hardest thing I’ve ever done to see that precious child suffer. I would do absolutely anything in my power to take it all for her - and yet I am completely helpless in the face of leukemia. I can be there for her and her parents and sister - but I can’t take a single chemo treatment for her or a single pain or a single fear. And the recognition of that fact and our grief at what leukemia is taking from and doing to Lily has caused RT and me to sob many times the past two weeks.

There are many who have lost their children to one tragedy or another. Given the choice, those parents and grandparents would have welcomed something like leukemia because at least after those long years of pain and treatments, they would most likely have that child alive and healthy again.

So my thought is that this experience is terrible and heartbreaking and sad, and it is worse than what most people go through. I think that we probably couldn’t bear to know some of what is still ahead for us in this journey with Lily. However, it is not the worst thing that people have had to endure.

No major conclusion from all this rambling, and I don’t have any great insight. Just some thoughts that have kept running through my head the past few days.

This entry was posted on Sunday, December 14th, 2008 at 7:05 pm and is filed under Lily's Leukemia Journey. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.