Six years ago today, almost to the exact time that I'm sitting here typing, Paul and I were given the words that no parent ever want to hear. Leukemia. Oh my gosh were we devastated with that news.
I sat holding a very sick little 2 year old in my arms. Being scolded by the "head" ER doctor. That "your daughter is very, very sick". Of course, I fired back with my big mouth. "No kidding, why do you think we're sitting in the fricken ER"?
Our heads continued to spin as we were told Carly was gravely ill. Her platelets were next to nothing. Her liver, extremely HUGE; as the one doctor had put it. Her hemoglobin almost nonexistent. Her white count was through the roof.
From that point forward. We thought our lives had just ended. What news could possibly be worse than hearing that your 2 year old has leukemia? Now I know. We started hearing words like Oncology, Oncologist, blasts, spinal taps, bone marrow aspirations, blood counts, broviac lines, ports. Being asked almost instantly, "does she have siblings"? "how, many siblings and are they sisters or brothers or both"?
We learned late that night, after being admitted that Carly had been diagnosed with AML (which is the most common form of leukemia for kids born with Down syndrome) leukemia. We were told how our treatments would be. 6 months of very intense chemo. Ideally, 3 weeks spent inpatient to receive the chemo and a couple weeks at home waiting for counts to recover. Then back inpatient again. This news was given to us by the a female resident doctor, who told us she had gone down to the lab herself and viewed the slides of Carly's blood work. She delivered the news to us about midnight on the 25th. By this time, Carly was receiving red blood and platelets. Still, our heads were spinning.
Early the next morning, on Sept 26, we met our Oncologist. He came in to our room and sat down telling us about a completely different type of leukemia. ALL leukemia. He went on to tell us that this was the "best" form of childhood leukemia. If you had to pick one for your child to have, you'd definitely want this one. He went on to tell us how the survival rate is much higher. And how the treatments are not as harsh. And that they can cure this one with like a 90+% rate. He continued on telling us of the treatment plan. 26 months. Yeah.... our mouths dropped. We then explained that we were already told she had AML. That the resident told us she looked at the slides from the blood work herself. Needless to say, he was NOT happy with that resident doc! And so, our heads were spinning again. Being hit with a whole new plan. Hearing 26 months worth of treatment didn't sound like something better to us. Verses 6 months... it sounded so much worse.
Soon after our talk with the Oncologist, we started receiving information regarding ALL. Reading about all the dangers involved. Reading about all the side effects. Realizing we were in for a very, very long haul.
So, today goes on. Not how we expected it to be, six years later. We never thought for one minute that Carly would not win her fight with leukemia. She had proved herself a determined and strong little girl twice before, with both open heart surgeries. Sure, there were times we nearly lost her throughout those 26 month; all of which were due to chemo drugs. But we never doubted that she would beat cancer. Beat cancer she did. She went into remission on the 14th day of treatment. Full remission. Zero blasts in her blood. Perfectly clear bone marrow.
Just the other day, I told my counselor that I feel so cheated. Cheated due to all those years of treatment. Treatment which caused our lives to be changed. Treatment that caused us to spend so much time inpatient with blood infections and fevers and dehydration from chemo. I feel cheated that we didn't have our happy, healthy little girl longer in our lives. She was taken so quickly, with no warning whatsoever. We NEVER saw this coming. EVER. We feel as if we only had about 3 1/2 healthy years with her. Well, that's not true. She was healthy from the age of 4months to 2years. In between heart surgery 1 & 2. But then, three months to the day of being discharged from heart surgery #2, came the diagnosis of leukemia. So anyway, yeah... I think we were cheated.
Now we sit here wondering, why?? Why she's no longer here. Yes, I know it was all heart related, but why? I know there are so many of you who believe in God. Right now, me and God aint good. At all. I will never understand a God who allows a child to go through so much sickness. Why doesn't he heal them? A God who snatches a child right out of the clear blue and does nothing to step in and turn it all around. What kind of God does that to a child? Not one I want much to do with. Even tho, I still want so desperately to believe that Carly is an Angel in heaven right now. She'd darn well better be after going thru all the crap she has endured in 8 short years. Maybe there's hope for me and God yet...but right now...I'm PISSED off at that so called God!
FYI: September is Childhood Cancer Awareness Month.
Also, children born with Down syndrome have an 80% greater chance of developing leukemia than other children. As I said above, usually these kiddo's develop AML. Carly was one of the very few with All.