We just began the toughest round of chemo for Lulu yesterday. There’s a reason for the name: Delayed Intensification. It’s just loaded with all the ingredients for an intense drama including 9 kinds of chemo, and, ooh our favorite thing: steroids!!! I don’t know how many of you have a spirited 5-year-old girl, or have met one, but ours walks the razor’s edge between charming and bratty on a daily basis. She’s a creative force, so full of life it seems impossible that it could be contained in this 35 lb. package. She also has the wit of a teenager; including the sarcasm. Even the word Mom can be delivered with more varied intention and meanings than previously thought possible. Depending when you meet her, she will sweep you off your feet and climb into your heart in the most charming, playful and engaging way, or drive you crazy with endless chattering and obnoxious demands for attention. So … let’s put this on steroids! Based on our last experience, I will be calling often, tag-teaming with Jimmy and Grandpa if he’s still here, telling lots of stories-that-will-be-funny-later, and planning my occasional escapes to gather myself enough to go back into battle.
That’s the easy part. The 9 kinds of chemo are more challenging. I’ve been running through a lot of emotions based around this leg of treatment. I’m hopeful since it’s our last giant hurdle to cross before starting maintenance for 2 years, and it feels like there might actually be a light at the end of the tunnel. The hold-your-breath scary part is there are no guarantees. This feeling of unsure footing has been amplified by recent events. We made a few friends on the H.O.T. (high risk) unit during our long stays at the hospital. I was just thinking about how well everyone was doing, and how lucky we all are. It starts to feel like you’re having coffee or beers with your friends, and forget you have children who are all literally fighting for their lives. I told you about Bo, who had the rug pulled out from under him and his family when his leukemia came back. He and his mom are at the hospital again, finding their strength and gearing up to fight once more. We have another friend who is a mere couple of weeks ahead of Lulu. She’s almost 4, and one of the cutest things I’ve ever met with huge blue eyes surrounded by thick wings of black lashes. She and Lulu hit it off immediately. After doing as well as our little one, she is suddenly in the fight of her life. The drugs, not the disease, are tearing her tiny body up. After starting delayed intensification, the toxic drugs broke down her intestinal wall, allowing bacteria to enter causing typhlitis, and her lungs have filled with fluid from an unknown origin. She is on a ventilator in ICU, just had surgery and I can’t stop crying for her. I’m so worried, and hope she finds every bit of little girl magic and chutzpah to pull through. I find myself wanting to hate these drugs with every ounce of my being, but I can’t. If they don’t kill her, they will save her (and my daughter’s) life.
I haven’t really asked the big WHY question too much during this time. I am now. I know both of these families have as many people loving and praying and thinking of them as we do. I’m not overly religious, but I do believe in a God, a force and an energy that created everything. I’ve heard, “this is God’s will” and I just don’t buy it. I don’t think God would ever choose to take one child’s life, and save another. It can’t be. Can it? I’m not losing faith, I’m just wondering. Maybe God doesn’t really work on that level? Maybe we were all just given free will and we’ve messed up this earth so much that we are creating all these diseases of the body, and mind. Our food and environment polluted … Cancer; rampant, cure; toxic.
I’m feeling pissed off, confused, scared yet hopeful. Maybe it’s been left in our hands with God to guide us, not fix it for us. If so, we need to change it. Quickly. We need to change the way we eat, purchase, process, work, live. We need to start wherever we can, in big and small ways. We must be part of the positive change, and not the toxic buildup. We need to stop filling our minds up with entertainment that thrives on hate, food that poisons us, work that kills our souls and our earth. I certainly don’t have all the answers and solutions, but I hope this will start a conversation. Maybe if we begin with ourselves, we can create some peace within that can be shared with all.
Please send prayers, good juju or whatever you’ve got to Bo, Kate, Lulu and everyone at Children’s, especially the HOT unit.
a.l.l. of us