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.

Looking Back

Kaylee has always been a happy, healthy, NORMAL child. I can count on one hand the number of times she's been to the doctor due to illness. She's had one mild ear infection, one virus, and a bad cough in a little over 6 years. 

The most common question I get from new friends is "How did you know something was wrong before diagnosis?" The short answer is "We didn't. We had no idea" And it's true. We really had no clue that there was something "really" wrong with Kake when her first symptoms presented. Here's the long version:On Feb. 7, 2012. I went to pick Kaylee up from school, like always, and she tripped and started crying uncontrollably. She'd been acting over dramatic (or so I thought) a lot the past week, and I was frustrated. Her teacher assured me she never acted like that at school, in fact, she'd never even seen her cry! We went to the store after school, and she sat in the cart the whole time, tired and weepy. It was the night after the super bowl, and she'd stayed up later than normal, so I thought maybe she was just exhausted and hungry (She didn't like the lunch I sent her that day, so she refused to eat it). For the rest of the evening, she didn't walk, and fell asleep early (after eating a BIG supper). I decided it was a virus (fifth's disease was going around) and thought I'd keep her home the next day. Later that same evening she tried to get up to use the bathroom and still couldn't walk. At that time, I thought she couldn't be "faking it" and brought her back to bed with me and decided to take her to the pediatrician the next morning. 

Still thinking it was a virus, I kept her brother (age 4) home from preschool the next morning (because I didn't want to send him if they had something contagious) and we all headed to the pediatrician's office. After waiting for an hour and a half with a VERY cranky (almost) 2 year old, I was livid and at the end of my patience. Kaylee was walking, and I was back to thinking she was being over dramatic. The pediatrician looked her up and down and told me she was certain Kaylee's symptoms were all in her head, as well. She listed all the symptoms she SHOULD have if it were any number of diseases, and she had none. No bruising, no redness, no swelling, and no fever. However, she suggested that we could have some blood work done just to be certain. I was just ready to be DONE at that point, and started to refuse. Then, I thought, "well if she thinks she can fake being sick, and keep me from working, she's going to learn that there are repercussions", so off to get blood drawn, we went. The rest of the day, she behaved normally. She was still walking a little slow, but went to ballet and made it up and down the stairs several times.

The next day (Wednesday- 2 days after she first fell down), she went to school like normal, and I went off to run my errands. (A week before Valentines' Day, so I had TONS of work to get done). I was checking out at Whole Foods when I noticed I missed a call from the pediatrician's office. I checked the message real quick, and started to worry. Her doctor just said that they'd gotten Kaylee's blood work back, and we needed to talk. Call her at the office. I could tell something wasn't right, so I headed to the car, loaded the groceries and the baby up, started the car and made the call. I KNEW something was REALLY wrong when they pulled the pediatrician out of a room to talk. She said Kaylee's levels were all too low- Her red blood cells, her white blood cells, and her platelets. This was indicative of a bone marrow problem- it could mean she had a virus that caused her bone marrow to stop working, temporarily, or it could be leukemia. Her levels were so low, though, that she didn't want to run more tests. She had already talked to the staff at Texas Children's and they agreed that I should take her downtown to the TCH ER immediately. There are SEVERAL hospitals closer to me, so I didn't know (then) why it was so important for me to take her to TCH (close to an hour away). I facebook messaged my husband right away, telling him to call me (I can't call him in Germany), and called my mom to see if she could take the boys. We were all in a panic. I called the school and asked them to have Kaylee waiting for me at the front, called one of my oldest/best friends (who owns a daycare) and asked her if she could watch the boys (my mom was downtown too, and couldn't make it back in time), ran home and grabbed some stuff and headed downtown.