The Nightmare Continues

Kaylee in the hospital the day after diagnosis... Still dancing

Robert (my husband) finally called me as we were driving to pick Trebor up from school. I had already panicked on the way to pick Kaylee up, and was doing my best to not break down again while she was in the car with me. I, very calmly (probably eerily so, since I was having to force myself to not fall apart) informed him that all of Kaylee’s labs were too low and we were heading to Texas Children’s to have more tests run. Before I could finish explaining it all, he, not so calmly, asked me “Do they think she has leukemia?” That’s when I started to fall apart again. I said “Well that’s something we’re looking at...” and he hung up. I can sort of laugh at it now, but at the time.... He called back just a minute or so later, still not quite composed, but just as scared as I. 

By the time we finally made it downtown, my mom was there to meet us at the ER. We went in, filled out a little bit of paperwork and were called back pretty quickly. They asked all the same questions as her pediatrician, and it seemed that they, too, weren’t convinced there could really be something so wrong with so few symptoms. They repeated the blood work (This time, she had to have an IV placed, and that was traumatic). Hours and hours, we waited. First they came back and confirmed that the counts were, indeed, too low so they would send her bloodwork to a hematologist who would look at them under slides. We got there at noon, at 5:00, my mom left to get the boys from daycare. Right about then, they came and drew more blood. I was talking to Robert online all through this (he was 9 hours ahead of me, and it was WAY past his bedtime, since he has to wake up super early for PT in the mornings). After that last blood draw, I remember telling him “This isn’t good. There’s something really wrong”.  Robert was exhausted and told me he was falling asleep, but would keep his internet up so he could hear the messenger beep if I sent him a message. 

At around 6:30, the two lead hematologists (who I hadn’t met yet) came into our room with our nurse. As soon as they introduced themselves, I could feel my heart drop, and I was trying so hard not to just start bawling with Kaylee still in the room. The nurse took Kaylee to get a special treat from the treasure box and, while I can’t remember the exact words of the Dr, the ones I do remember are “We’ve tested her blood, and we’ve found that she does have leukemia”. They stayed and explained that we’d be admitted immediately, and that she would have a bone marrow biopsy the following day to determine what type of leukemia it was. As soon as he told me it was leukemia I (very rudely, I’m sure)  began trying to message Robert. He didn’t respond.

After the doctors left, I took Kaylee to McDonalds and let her order everything she wanted. I’ve never bought my kids soda and try to limit their “crap” intake, but that night she got chicken fingers, sprite, and a milkshake. I told her “all rules are off tonight, Kake... you can have whatever you want”. After the hell she’d been through (blood draws were new to her, and she cried and cried and cried every time someone came in to mess with her IV), she deserved Disney World, the least I could do is give her something fun to eat. During the trip to McDonalds (in the next building) and all the way back, I was still frantically messaging Robert with no message back.

After more than 30 minutes, he finally messaged back, and I explained what was going on. I honestly cannot remember anything about our conversation. Really, all I remember about the rest of that night is comforting Kaylee and crying and crying and crying after she went to sleep. The nurses were SO kind, and the doctor who had to come in and read 103398609804589 pages of paperwork regarding the procedures she’d have done the next day was as comforting as he possibly could be. Every time I’d look at my girl, though, I’d break down. She was having nightmares in her sleep (a first) from all the trauma of the day. 

I didn’t sleep more than 10 minutes that night, and Kaylee’s sleep was broken as well. I remember just laying in bed with her (since she couldn’t sleep without waking up terrified without me holding her in her sleep) wondering how something like this could have happened to the SWEETEST child in the world. Kaylee’s the kid who will go play with the kid who’s being left, the kid who ADORES her brothers and well... pretty much everyone. Why her? 

While I knew about leukemia, and had even fundraised for a sweet little boy WITH leukemia, I can honestly say I never really thought “it could my kid”. I’d never met a “cancer kid” BEFORE they were diagnosed, so I guess it always seemed like something that happened to “other” people. I KNEW it would be my worst nightmare, my imagination could never imagined just how AWFUL the reality was. Looking back, months later, I wish I’d been more informed. I was alone, and all I knew was “leukemia is fatal”. I can say, without a doubt, that was the very worst day of my life. From completely normal to SHATTERED in less than 12 hours. From NO symptoms to deathly ill in 48 hours. 

Our lives changed forever on that Wednesday night. Fortunately, looking back, it’s not as bad as I feared. I remember, when we left the hospital on Valentine’s Day, our social worker told us “You will become experts at finding the silver lining” and it’s so true. I see more good in strangers than I ever have. While there have been a few let-downs, there has been SO much joy, love, and support offered up to us from most of our family and the community. We’ve been wrapped up in love since the moment I announced (facebook is a beautiful thing)  her leukemia. Within hours, one friend had organized a gift card drive. By the time we left the hospital, Kaylee’s room looked like a gift shop. She had more crafts than she could possibly complete, and movies to watch day and night. She was happy. When it comes down to it, at the end of the day, that’s what matters. My focus has changed entirely. Things that were secondary are so much more important and things that mattered SO much are just distant memories. Cancer sucks, there’s nothing that will change that, but my reality does not.