March 18th, 2010

It's interesting to think back on March 18th, 2010. That was the day Elena was diagnosed. Every once in a while, something will cause me to stop and remember a part of that day. What a day it was! It seems kind of surreal thinking about it now. It certainly was a day removed from time. The whole week we spent in the hospital after her diagnosis was that way. It's interesting to think about that day - things feel much better now.

Back up about a month prior to diagnosis. I started noticing these odd pea-sized bruises on Elena's body. There were just a few at first- mostly on her legs. Then over a couple of weeks a few started showing up on her stomach and arms and they weren't going away. I mentioned them to Eric once, but we didn't want to be worry warts and figured, "Eh, kids get bruises!"

Then the Friday night before Elena was diagnosed, Elena was flushed and felt warm. After taking her temperature, we found she had a fever- only around 100, if I remember right. We gave her Tylenol and she woke up better in the morning, although I had a pit in my stomach wondering what was going on. Her fever came back on and off throughout the week, but it was never extremely high, so we didn't think too much of it. We also found she had a little ingrown toenail, so we thought maybe the low grade fever was just a response to a tiny infection from that.

Sometime that week, I was struck again by all of her bruises. I gave her a bath and when I was dressing her after she got out, I noticed she had developed a ton more bruises. In strange places, too- like on the tops of her feet and on her back. I knew that she hadn't fallen down recently, so I was really perplexed.

Two days before she was diagnosed, I took her to the park to play. She played a little bit, but mostly just sat quietly watching the other kids play. I mentioned it to Eric when I got home because it was such strange behavior for her - usually she just plays and plays at the park.

The day before she was diagnosed, my sister-in-law came to pick Elena up to go to her cousin's birthday party and to give me a break with a still pretty new Baby Lily. When Amy dropped Elena off later that afternoon, she asked if Elena was sick because she was really pale and had just sat and watched her cousins play for most of the day. I said I didn't think so. It was probably just because she was tired from getting up early to go play. Plus, maybe she was just trying to fight a little something off - she did have a fever the weekend before. After Amy left, Elena cuddled up with me on the couch and told me she had fun. She was pretty tired and listless the rest of the day, but I mostly just wrote it off to being tired from getting up earlier than usual. Later that evening, when Eric got home, I told him that I thought maybe we should go get Elena looked at because she'd been a little off all week - between the fevers, bruises, lack of energy, and paleness. (Classic, textbook description of leukemia symptoms... not that catching it any earlier would have helped, but man!).

Elena at her cousin's birthday party - the day before diagnosis.

Looking at these just before diagnosis pictures is kind of haunting... to think of how bad she was - how much the leukemia was ravaging her poor body.

Well, that evening, Lily had some AWFUL gas/stomach problems and I was up walking the floor with a screaming baby until 5am. It was not a good night :) As I handed Lily off to Eric around 5, I said we were ABSOLUTELY going to the doctor to get Lily looked at because she had been having insane stomach/gas problems for weeks and it was getting worse. The ironic thing is that I made the doctor's appointment for Elena as kind of a side note. Come to think of it now, I don't know if I would have gotten Elena in to the doctor when I did, if it hadn't of been for my desperation to figure out Lily's gas problems. Maybe that awful night with Lily was a blessing in disguise. I've never thought of that before.

The next day, I made an appointment for Elena and Lily at the pediatrician. I laid Elena down for her nap last thing before we left. As I put her down, I looked at her and thought, "Ah, the doctor's going to tell me this is all nothing - as always. I'm going to feel like an idiot again. Fever and bruising - how random. The bruises are probably because she's a little, active kid. And the fever is probably just a little bug. I hate going to the doctor for nothing and feeling like an idiot!" But then I thought, "Why don't I google her symptoms just to get an idea"? Lily was sleeping also and I went to the computer and typed "fever and bruising in children" in to Google. As the results pulled up, my heart stopped. The first link that popped up was for The National Cancer Institute's page on Childhood Acute Lymphoblastic Leukemia (ALL).

I ignored most of the page and scrolled down to the "symptoms" part, about halfway down. It said, "Possible signs of childhood ALL include fever and bruising." I read on. Weakness, tiredness, and paleness were all symptoms. I had a sick feeling in my stomach and my mind was reeling. "Wow - those symptoms match just about perfectly. No, it CAN'T be leukemia. There's no way. No - you always do this Briana - you always assume the worst and fly off the handle. Cancer? Come on! But what if..."

I browsed over more of the page - scanning and picking up some information here and there-prognosis, how they test for leukemia, etc. You know, just as an fyi... because she didn't have leukemia. She couldn't possibly. That happens to other people. Not to me. Not to my little girl. Then I went back to the search page and looked at the next three results down. All links about leukemia. My heart started to beat fast again and the sick feeling worsened. I frantically searched the search results for some other explanation. What else could cause fever and bruising?! I called Eric at work and told him that I knew I was paranoid and usually overreacted, but that I was really scared because I had googled Elena's symptoms and all that was coming up were links for leukemia. He listened, but told me that I did always freak out about those kind of things and that she was probably fine.

"Can't you come with me to the doctor? I'd feel better - I'm really scared."

He had to work and couldn't come with me. "It'll be fine, just be firm with them and get an answer." he said.

"I hope so. It probably is nothing, but I'm going to have them run a blood test just to be sure." I responded.

When I hung up the phone, I got back on the computer to do some more reading and get a better hold on the situation. What I read didn't make me feel any better. I went into my room, fell on my knees, and lost it. I cried and prayed and cried and prayed. I couldn't shake the thought of leukemia from my mind. I begged Heavenly Father for her not to have leukemia, for her to be ok. I begged Him to spare her. Slowly, a feeling of peace came. Not really an answer, but peace. I knew things would work out. My tears stopped and I felt strengthened to face the rest of the day - however it turned out.

At the pediatrician's, we saw the Physician's Assistant (PA). As she looked over Elena, she started asking me questions about other symptoms - symptoms I recognized from the ALL symptom list I had seen online. My heart sank. She was being really vague and forcedly calm, but I knew what she was thinking. When she finished, she told me she was going to go get the doctor to look at Elena. That was a bad sign. He came in - overly cheerful - and asked me what symptoms Elena was having. I related everything to him again. I asked him a few questions trying to approach the subject that everyone was avoiding. He said,

"Well, I don't want to scare you, but..."

I stepped in, "I googled her symptoms before we came and Leukemia was at the top of the list."

"Yeah." His breath exploded out like he'd been holding it in. "That's what it's looking like." He hurried on, "But, you know there are a couple of other things... it could be mono. We won't rule them out just yet."

They took some blood to check her hemoglobin. While I waited for the results, I called Eric and gave him the news. I was shaking so bad that I could hardly dial the number. I can't remember what I said or what he said, but he left work immediately to come to us. While he was driving up, the results for the hemoglobin test arrived. It came back insanely low - a 4 (normal is somewhere around 12). The doctor told me she was definitely anemic and would need a blood transfusion. And then to get a further diagnosis, we would need to get some blood work done. Eric arrived while our pediatrician was calling up to Primary Children's to talk to the hematologist about what we should do next. We hugged and I broke down. I know I had had heaven's help because I had been able to be strong and composed until then - the doctor's and nurse even commented on how they didn't know how I was keeping it together so well, but seeing him brought my emotions to the surface.

"I should have been here," he said. "I'm so sorry!"

He and his friend/ co-worker, Shane, gave Elena a blessing. The doctor, PA, and nurse all came in several times to see if we needed anything, to bring Elena something to do while we waited. Everyone was very kind - but I hated it. I knew we were getting special treatment because they knew that something was really, really wrong. I didn't want attention- I just wanted to be normal. In the back of my mind, I was still hanging on to the hope of it just being mono. But, I knew from how they were acting that it wasn't.

The hematologist said we should get Elena up to Primary's right away. The doctor offered to send us by ambulance if we felt too emotionally impaired to drive. But, we said we'd be fine and headed out to the car.

We were admitted through the emergency department (ED) at Primary's. We actually stayed in the ED for quite a while. Elena got an IV, several blood tests, x-rays, blood transfusion, and some other tests done there. They told us they could have a preliminary diagnosis in a few hours. And they did - sometime that night (the hours all blurred together) they told us that her blood tests confirmed leukemia. They wouldn't know what type for a few days. This left us in agony - of the two major types of childhood leukemia, one has a 40-50% recovery rate and the other has an 80-90% recovery rate. The doctor who gave us the diagnosis told us a few more things: no known cause usually - leukemia just kind of strikes randomly, there aren't "stages" of leukemia like there are with other types of cancer - it wouldn't have mattered if we had brought her in two months ago - the treatment is the same. There was no room in the Immuno-Compromised Unit (ICS) that night, so they moved us up to the third floor for the night.

It was such an interesting day- so horrible. Our world was shattered in a matter of moments. But, it was also a day where I felt very loved - we have wonderful family and friends. And I felt the love of the Lord so intensely. I feel like he prepared me for that day. I know He was with us.