The Diagnosis: Part Two

Nothing can ever prepare you for a moment like this. Nothing ever should. No one should have to hear the words "Your child has leukemia."

These are a few pictures from the days leading up to her diagnosis.

4 Weeks before diagnosis, end of the year school picnic.

3 Weeks before diagnosis, first week of summer getting free lunch in the park after swim lessons.

2 Weeks before diagnosis, cherry picking!

1 week before diagnosis, family movie night at the village to see Incredibles 2. Symptoms started during this week.

1 week before diagnosis, watching the car races at Meridian speedway. Symptoms in full swing.

The day before diagnosis, Wet and Wild parade at Eagle Fun Days. First day we really started to notice her refusal to stand or walk.

                       The day before diagnosis, Wet and Wild parade at Eagle Fun Days. 

The morning before her diagnosis would come. She just finished getting her labs drawn in this picture. I remember looking at this picture noticing her paleness and fragile looking body. This was the picture I posted that morning on social media, asking for prayers regarding her unusual symptoms. I'll never forget the fear I was feeling in this picture.

On our way to getting admitted for the first time, the drive down to the hospital is a moment I will never forget. We wept the entire drive. I remember putting my hand on Cody's back, trying to console him as much as I could. Trying so hard to keep it together, trying so hard to cling to the belief that there was still a chance this was not leukemia. I stayed focus on the chance that this was a big mistake, I stayed focused on denial. I was determined this was going to be a big mis-understanding.

Our whole family had been waiting along with us throughout the day for the news about Lilah. I think everyone was worried about her.

We need to tell the family. We need their prayers. We need their help.

Through a video message I explained to both our families what was happening.

We got to the hospital. Everything just felt surreal. This is all just a dream. This isn't happening to us. Things like this don't happen to us; not to our family. We don't get cancer, that's for other people. Stronger people. More spiritual people. People who are more capable than us.

Transport came down to take us up to our room.

I remember walking through the doors of the secured unit seeing the words "Pediatric Oncology" written across the top.

This can't be happening. I just remember thinking how did we end up here? What is happening?  I remember feeling fear and uncertainty about what was ahead. I have walked by this unit a hundred times thinking, those poor families in there. I can't imagine what those parents are feeling, I can't imagine what those children are going through!

I am the type of person who has to fast forward through charity commercials for childhood cancer because they make me cry.

On the outside I was still smiling, chatting in a friendly manner with the nurses who now accompanied us. On the inside, I felt so scared and was trembling all over.

We walked into the room, and saw the hospital crib bed and I just felt a little sick. Still just in complete denial that Lilah would be in one of them. When I saw babies hospitalized in these cribs, or even just seeing an empty one, I thought about the parents standing next to them. What must they be feeling? How could anyone ever get through such a thing. Those poor people, I can't even imagine what that would be like.

The nurses swiftly did their job. Asked all the questions. Said all the things.

Something felt so very awkward, like there was an elephant in the room. We knew we were there for observation and further testing, but that was about all we were led to believe at the time. The nurses seemed to know something we didn't. I felt like screaming.

Somebody just say it! What are we doing here?! What is happening!?

Finally one of the nurses just looked at us and said, "Do you know why you are here?"

I nervously spoke up, "We were told she needed further testing to see if she has leukemia."

The nurse responded, "This is a classic presentation of leukemia, I would say to prepare yourself it's pretty likely that's what she has."

Maybe she sensed my desire to know what they were thinking. Well I appreciate someone finally had the guts to say something, but I am sure she doesn't have all the information. There is still more testing that needs to be done. Lilah has to have the bone marrow biopsy first.

We were told the oncologist would be there soon. So much for rushing down! Now we were just waiting. Lilah was in great spirits. I remember having quite a few laughs together as a family while we waited.

They did have to start her IV and take labs, which she screamed through. She had done so well with her labs that morning she hadn't even shed a tear. This was so much worse. They put a little cuff on her arm to protect the IV line, and put her in a purple doggy hospital gown which she loved.

Finally,  the oncologist walked in. I remember the first thing that went through my mind was that he looked so familiar to me. The nurses finished up, and we sat down to have a chat. Which we would later remember as, "the chat."

He quickly got to the point by saying,

"You are going to get a lot of information tonight, and there are just two things I really want you to remember and take away from our conversation.
First, I am 99% certain your daughter has leukemia.
Second, it is very treatable. "

There it was. Just like that. It hit me in the chest like a ton of bricks. I felt my mind and thoughts just start reeling.

I remember glancing at Cody in utter disbelief and confusion. I thought we were here for observation and testing. We weren't supposed to be having this conversation yet.

"You don't need to have the bone marrow biopsy to confirm the diagnosis?" I asked.

He explained that with her current lab results and her symptoms of leg pain, paleness, and long term low grade fever, this is a very classic clinical presentation of leukemia. At this point the bone marrow biopsy was to confirm which kind of leukemia she had, but they were already certain she had leukemia.

The kind of leukemia you have is very crucial information. I had done enough reading that day to know there were several known forms of pediatric leukemia, and if you had to have a cancer of the blood, the one you want to have is ALL (acute lymphoblastic leukemia). The doctor confirmed this. It had the highest curability percentage and the least intense course of treatment.

He then explained all that was happening inside her body. With leukemia it is not staged like other cancers, because it is already everywhere. It is in her blood. Every organ, every lymph node, every inch of her body was already infected with it. He told us leukemia starts with just one cell. That cell has a DNA error and is programmed never to die. That one cells then turns into many thousands of cells over time. Given her age he informed us her disease probably started when she was just a few months old. He also said there is no known cause and that it was nobody's fault. It somewhat helped with the tremendous guilt we felt instantaneously. Did we catch it soon enough? How could we not see this was happening?

We learned her liver, and spleen and lymph nodes were all enlarged, full of leukemia cells. He told us her bone marrow was absolutely loaded with them, causing pressure and pain in her lower legs. He said if he could show us, her bone marrow would look like a sponge dipped in white paint and it would literally be dripping with these diseased white blood cells.

Her diagnosis upon admission was pancytopenia, low red blood cells, white blood cells (neutrophils), and platelets. We learned that she was extremely anemic. Her hemoglobin was at 5.8, normal is 12-14. Her heart was working on overtime to keep her body and organs perfused. It was causing a heart gallop and contributing to her extreme fatigue. Her platelet count was also below 50 thousand units, so before she could have her procedure tomorrow she would need 2 blood transfusions and a platelet transfusion.


We then had a long chat, probably close to 2 hours. He briefly talked about what would happen over the next few days, and patiently answered all of our questions, never once acting like he needed to go. He wanted to make sure he spent all the time with us that we needed. He told us to plan on anywhere from 1 week to 1 month in the hospital which would depend on her diagnosis. The rest of that conversation was a blur, we just held on to those two things for that night like he said.

Lilah has leukemia.

It's very treatable.

The Diagnosis: Part One

Summer 2018 was turning out to be the best one yet! We had already enjoyed a couple of little family vacations and camping trips, lots of library days, picnic lunches and snow cones in the park, and a daily swim at the neighborhood pool.

A few memories from the start of the summer!

Beach time in McCall at the Simplot cabin. It was a beautiful warm sunny day in May!

It was a great mother's day weekend at the cabin. We spent lots of time snuggling by the fire, fishing, and playing on the beach.

We visited grandparents on our way down to Yellowstone, and enjoyed our time with them. Lilah is giving great Grandma a check up.

Root-beer floats and a friendly game of family football!

We had a family vacation to Yellowstone. We saw so many amazing things as a family!

It's about the simple things, I love this picture!

We will never forget witnessing the historic eruption of Steamboat Geyser! We all got completely soaked!

My favorite little pig-tail top knots!

Slides and swings, her favorite!

Camping at Grand Jean and going for four-wheeler rides!

It was a chilly spring in the mountains, and we drove up to the top of the world!

Sweet baby girl, messy hair don't care, and s'mores by the fire.




Life was good, and normal, and simple.

Lilah had been acting irritable and complaining about ear pain for a couple of days, when I first decided to take her to see a doctor. She hadn't had a previous cold or virus so I thought it was unlikely she had an ear infection, but she had spiked a high fever. After using my handy dandy amazon otoscope, things looked a little abnormal and I decided to take her in.

Surprisingly, after the doctor peeked in her ears she said they were infected. We were both a little baffled since she hadn't had any previous symptoms, but obviously didn't think much more of it than that. Over the next several days, she took her antibiotics as prescribed and we carried on with our summer as usual.

Her ear pain seemed to get better, and she started sleeping a little more consistently at night. Oddly, even though her ear pain and sleeping got a little better, a low-grade fever persisted. I kept alternating acetaminophen and ibuprofen around the clock to keep her comfortable, but after eight or nine days I had convinced myself that she must be over this by now. I started to wean her off the medicines and kept on eye on things. Her ears looked normal, no complaints of pain; she just had a fever.

For anyone who knows Lilah, or who has heard me talk about what it was like to be her mom, you would know she is one spunky, energetic, and even at times mischievous little girl! She was absolutely exhausting every. single. day. She played so hard everyday with all her little girl heart! She was into everything, leaving a trail of destructiveness behind her! We called her the tiny toddler tornado. We would make jokes about how the answer to every question in the house was simply.....Lilah.

Why is this room such a mess? Lilah.

Why are my keys in the refrigerator? Lilah.

Who put all the cucumbers in the play kitchen? Lilah.

You get the gist. She was a very normal, very busy, very happy and seemingly healthy two year old girl. Although she was exhausting to parent, we mostly embraced and loved this about her personality. Little did we know how well that would serve her down the road, how much we would miss seeing her play and get into things, and how much she would need that fight in her soul.

The changes that took place in her over the course of several weeks seem so obvious now in hind sight. However, they happened so gradually over time that it was easy to explain away.

She is so tired and lethargic all the time. She must still be catching up on sleep she missed from being sick.

She hasn't felt up to do anything lately. It's so strange she doesn't want to swim or play. I bet she will turn the corner tomorrow.

She seems to be spending a lot of time sitting on the couch. She's probably just still having some lingering fatigue from the virus she had.

She's been asking me for days to carry her everywhere we go. She's always a little clingy when she's sick.

I can't believe she is asking me for naps! It's probably because it's summer, we've been playing hard and staying up late.

I am surprised she is still running a little fever. I will just give this another day or two, the pediatrician said they don't worry unless its been over two weeks.

Does she look a little pale and puffy around her face? Is she limping on her leg?

I could find a million reasons to rationalize or find an explanation for why she was acting the way she was acting. I found myself thinking day after day, tomorrow will be the day she will turn the corner. I bet by tomorrow her energy will be back.

We were to the weekend, and things continued to puzzle both Cody and I. We had at that point determined we would take her back into the doctor on Monday. It was day 10 of her antibiotics.

She started to complain that her legs hurt. Oh goodness, she is really working the system now. I would tell her she needed to walk like a big girl, and she would just start to cry. Big. real. tears. Something inside of me just told me to indulge her. Just carry her. Just do it. 

She wouldn't leave my lap the entire weekend. She didn't want to swim, instead she fell asleep in my arms on the side of the pool. It was at that moment a friend of mine asked, "Is she sick?" I was a little embarrassed to be honest.

I quickly summarized the strange behavior to my friend, and she said, "she looks so pale and like she is not feeling well."

All of a sudden it was obvious. She WAS so pale.

When our friends left that day, instead of running around with all the kids and waving goodbye, she sat on the driveway and waved goodbye to them. She didn't move, she didn't get up, she just sat there like dead weight all by herself. I remember that was the moment where I was struck with a little bit of fear.

Something is wrong with her.

We were to Saturday night, and we started to really assess her leg pain and refusal to walk. We encourage her to walk, we tried to get her to race back and forth with her brothers. You could tell she really wanted to run but she just couldn't, and she was obviously limping on her right leg.

Panic started to set in.

Cody started to look some things up on the internet. He went to trusty old google and typed in "fever and leg pain in toddlers." At the top of the list,

Leukemia.

I of course chided him for thinking such a thing.

"Honey, this is why you don't google your symptoms! Cancer is always going to be the answer! She doesn't have leukemia, she must just have a really strange virus that's settling in her joints."

However much I brushed it off, there was a pit in my stomach realizing that her symptoms really did match what we were reading. I just believed there had to be a different explanation. Cody went along with my rationale, obviously eager to believe anything but the possibility of leukemia.

Cody and I started discussing what we were going to do. I hate taking my kinds to ERs or urgent cares, so we opted to phone the on call pediatrician. He didn't seem very concerned, certainly did not consider it an urgent matter. He advised us to give her the last does of her antibiotic and then stop giving her antifebrile medications. If symptoms persisted to go into the after hours clinic in the morning. We had a little peace of mind. If he thought it was leukemia he would have told us to go in now I rationalized! We spent the entire evening reading and researching every possibility.

Growing pains? Meningitis? Viruses that settle in the brain-stem? Vitamin deficiencies? Autoimmune diseases?

Everything just kept coming back to one thing.

Leukemia.

Sleep did not come easily that night. Something felt a little uneasy.

By the morning I was so eager to get to the doctor. Lilah didn't look any worse than her usual, but having become acutely aware something was definitely not right with her, we called to make an appointment as soon as it opened.

They got us right in, and we rushed down. The doctor asked for her history which we thoroughly provided. By the end all I could say to him is, "I really don't know what else to say other than something is wrong with her. Something is just not right."

He examined her and determined to run blood work. It was the first time someone other than Cody and I used the word leukemia, but he mentioned it along with a few other possibilities.

"So, it is possible this is just a very unusal virus, right?" I asked him.

He responded, "Yes......it is.....possible." His voice was stretching.

I will never forget the worried look on his face. I ignored it. I buried it. No one is going to be able to tell us anything until we get the blood work back. I am not even going to go there until we hear back.

As he walked out, I felt like he was already consoling us. He told us what a beautiful family we had, and that he hoped she would feel better soon. He said, "When a mother comes in saying something is not right with their baby, we pay attention to that," he continued, "no matter what, you will hear back tonight. Even if the labs come back normal we will call you."

I remember thinking...why is he acting like something is wrong? Nothing is really wrong here. It's just a virus.

We walked downstairs and got Lilah's labs drawn. She did awesome; she never even shed a tear.

Cody and I walked out of the hospital that day side by side, and in complete silence feeling very heavy with fear and uncertainty. We got the kids buckled in, and we got in the car to drive home. We shut the doors and sat there for just a moment. I looked at him and said, "This is not going to be leukemia Cody. I don't even want to let our minds go there until we have to. Just don't even go there. Everything is going to be ok." He agreed, out loud anyway. I could see, however, that inwardly he was feeling the same emotion I was.

Fear.

Fear of the unknown is absolutely useless, or so I have come to believe as of late. Worry seems useful to our brains, when in fact it really isn't. It is a complete waste of time and energy. I reminded myself of these thoughts in my head throughout the course of the day. There is no need to worry. Worrying is not helping anyone or anything. Just wait for the lab results.

However, at some point I just gave in entirely to the worry and the fear. I told myself, of course I'm worried! I should be worried. I have just had a doctor use the word leukemia when talking about my daughter's symptoms. When it turns out to be nothing, well then it wasn't wasteful. I love my daughter, and I am worried for her well being. So you know what, I am just going to worry for today! And it will be such a ridiculous memory someday of the time we thought one of our children had cancer! And how awful and scary that day was, and how grateful we were when it turned out to be nothing.

I spent all afternoon reading about leukemia, all the while feeling a little foolish for doing so. I read  about how it is diagnosed, what labs they run, what tests would come back looking like if it was leukemia.

I was ready.

That's what I do best of course. I prepare, I get organized. I had my armor on. I knew exactly what we would be looking for so that when the results came in I would know immediately that it wasn't leukemia.

The hours ticked by ever so slowly. All the while I was thinking we were probably blowing this way out of proportion. For some reason we had the idea to call family and let them know what was happening, and to have Cody's dad come over and give Lilah a Priesthood blessing. I called my parents, and almost felt sheepish telling them we were ruling out leukemia. Obviously it wasn't going to be that, and I didn't want to cause them unnecessary worry, but something inside me wanted to tell them.

We sent video messages out to all our siblings and parents that day, telling them that something is not quite right with Lilah. While we were sure everything would come back normal, we wanted them to be aware and say extra prayers for us that day.

Cody gave Lilah a blessing. Some of the highlights included:

Your family loves you.
Heavenly Father and the Savior love you.
You are well taken care of by your family and by medical professionals.
You will continue to be able to do the things you love the most as a child.
You will overcome this illness that has overcome your body.
You will feel the strength of Heavenly Father with you.
Get the rest you need to heal properly.
The doctors and nurses and those working with your results will be fast and correct.

We felt a sense of peace and strength. We had faith in our Heavenly Father that He would watch over our precious daughter.

Pretty soon, it was past 5:00 p.m. The doctor told us if we hadn't heard back by then, to go ahead and call back. So that is what I did.

The triage person on the other end was super unconcerned about my request for lab results."Unless there is a critical value, they won't call you back. So you probably won't hear back until tomorrow morning," she said.

"No, no," I pushed her, "the doctor we saw today said we would hear back either way by this evening."

"Sorry, that's just our policy," she insisted.

I told myself, if there aren't any critical values then there's nothing to worry about. I walked over and gave Cody the news about the labs. He was angry. He wanted me to call back. I told him it was good news if we didn't hear back! This was a good sign!

Except that it wasn't, because we knew something was wrong with Lilah. Labs or no labs, we knew it.

We finished up dinner and got everyone in bed. All the while watching my phone like a hawk. No call, no results, no rest for our anxious minds.

We were doing the nightly clean up around the house and Lilah was just following us around a little. It was then I noticed she had started to drag her right leg. She was trying to lift it to walk, but just couldn't. It made an awful dragging noise on the floor with about every other step she took.

"THATS IT!" I said. I have had it. Something is wrong with her and we need answers!

I picked up my phone to call the on call service again, and demand to speak with the on call doctor. Just then it started to ring.

It was the doctor.

"Hi there, we just got the results of Lilah's lab work back," he said. I fully expected him to say they came back normal, and we should follow up with our primary care physician in the morning.

" We did find a few abnormalities that are a bit concerning," he said.

At this point my heart was absolutely beating out of my chest. My cheeks were hot, and I felt like my ears were slightly ringing. My hands were trembling, and my voice was shaking. I felt like I was listening to someone talk through glass or under water.

All I heard was platelets, red blood cells, and white blood cells.

Those were the three tests that I knew by heart from my reading that day. Those were the three tests that mattered.

The doctor continued, "These are the tests that could possibly indicate something like leukemia. We need to admit your daughter to the hospital tonight for observation, as soon as possible. You will meet with an oncologist when you get there. How soon can you get here?"

I was literally frozen. I stood there with my hand over my mouth and my eyes closed. Trying so hard to just process what words had been said.

Poor Cody was standing nearby waving his hands at me. "What's going on Lindsay!?"

I just shook my head in disbelief.

"I'm sorry....what did you say? Did you say she has leukemia?" I asked the doctor.

"Well, we need to get her to the hospital right away so you can consult with an oncologist and have some more testing done, but it is very concerning lab work."

We ended the call. I got off the phone and repeated what he said to Cody.

This can't be happening. There has to be some kind of mistake. I am sure that with further testing this is still going to turn out to be a virus. This will all be over soon.

I called my mom and dad who had been waiting to hear back about results.

I said the words, and I just heard sobbing on the other end.

We didn't have much time to talk or explain. He wanted us down to the hospital within the hour. I frantically called a friend to come stay at my house until my mother in law could be there, and threw whatever I could grab into a backpack.

Within minutes we were in the car on our way to the hospital. Hoping for the best, and fairly unprepared to hear the worst.

What is Lilah Beats Leukemia?

Our sweet and precious two and a half year old daughter Lilah was diagnosed with Acute Lymphoblastic Leukemia on July 8th 2018. It is a day that will ring clearly in our minds forever and left us in complete shock. In the days and weeks that followed we had so many thoughts and emotions running rampant through our minds. We decided to start this blog in part to document and share her journey with family and friends, but also to help us cope with and process our own experience. We also hope that for anyone who may be going through a similar experience who might come across our story, they can find something here to relate to and know they are not alone. We invite you to share along in our journey, the good, the bad, and the ugly. We feel like it is Lilah's story, and we as a family are here to support her and lover her through it. We want to share it with anyone who wants to be a part of the journey with us.

This photo is from November 2017, eight months before her diagnosis and just after she turned two years old in September. 

This photos is from July 2018, three weeks into treatment and just over two months before her third birthday.