First Sedation

Emma finished her first 90-day cycle of maintenance.

Friday the 22nd was the first day of the next cycle, so it included a Lumbar Puncture. Anesthesia has been increasingly difficult for Emma. No reactions or adverse side effects; but each successive L.P. and anesthesia has made her more grumpy and more groggy and more nauseated.

Today we tried the much lighter sedation done right in clinic. No anesthesiologist; just some lighter drugs that allow her to be sedated and loopy; but not actually put under. While she didn't actually enjoy that, she prefers it over anesthesia.

Because of the difference in location, Daddy and I were able to stay with her during the procedure and see how it goes. Doug did the procedure while Dr. Engle sat on the couch with us and talked a bit about the procedure and taught us more Oncology 101. He can't help teaching whenever his mouth is open. I love that every question is answered with an explanation and theory, rather than just an answer. He helps me understand so much of what Emma is going through and how the procedures work and WHY he gives the direction that he does.

Emma did great. On the way to get the boys from Grandma and Grandpa, she talked us into a treat: a can of pringles. She hasn't been so enthusiastic about sweet things for so long. She doesn't like ice cream any more. Chips are her favorite treat, and to choose her own can of pringles is a pretty big deal.

Goals Update

First off, Clinic on Friday was pretty good. We love Doug. We love Dr. Engle. We are so happy that those two are Emma's primary doctors and we are glad when clinic days are Friday. Also, Daddy got to come to clinic, which is a real treat.

Dr. Engle explained about the Methotrexate IV. He said that some kids' counts crash with the first IV methotrexate and the body figures out how to process it. Some tolerate all the following doses through the rest of treatment; just the first dose shocks the system. The goal with the increasing dose over two months is to get to the highest point that the patient can tolerate - to make them sick.

That's chemo's job: to make you sick. It is killing the cells that spread cancer. Once the body figures out how to metabolize the chemo, they escalate.

Emma is enrolled in a lot of cancer studies. One through Huntsman Cancer Institute is mapping the gene sequence of Emma and Clinton and me. Then they can compare Emma's DNA with her parents' DNA and see what there is to learn about it. Are there genetic factors? Did her DNA mutate? Can they find a cause for leukemia somewhere in the genetic code? Julie from Huntsman came to draw blood from Clinton and me, since that hadn't yet been done.

I cringe at blood draws. Julie had to poke Clinton twice, and he laughed during his blood draw. There's a genetic tie: we now can guess why Emma laughs in the face of needles.

Our buddy Maddie was in the infusion room getting some blood, so we got to chat with her and her mom. While I was talking, our nurse Kristin employed her mad ninja skills to get all Emma's chemo in and her port de-accessed without me noticing.

Another buddy, Braelyn, was inpatient with fever and low ANC, so we dropped in to visit them, too.

Cancer isn't necessarily a social thing; but we're making friends.

Back in September when Emma was diagnosed, we made some goals.

About a week after we brought Emma home from the hospital, we stuck a white board up in the kitchen. I'm not a schedule keeper. I don't take my vitamins on time. If it weren't for school being so consistent (imagine: they start at the same time every single day. Weird.) we would not do anything according to a schedule. Chemo has to be administered on a schedule.

Along the top of the white board I distilled our four goals for Emma's cancer journey. I can't control how Emma handles treatment. I can't personally prevent fevers, complications, relapse, or any of the frightening possibilities. There is a lot outside our control.

We do get a say in whether our family pulls apart or whether we grow together. Clinton and I get to decide whether we will join a horrifying statistic - 80% of parents of cancer kids get divorced. That's a mind-blowingly unbelievable statistic.

Also, a lot of people going through serious major stresses frequently distance themselves from God. To paraphrase Jeffrey R. Holland, when storms rage and the sea is choppy, don't get out of the boat.

Cancer takes a lot of casualties beyond physical lives. It doesn't just kill, it leaves a mess in its wake. The fabulous doctors and nurses are responsible to fight cancer in Emma; and Emma's team fights the collateral damage that it causes.

Clinton and I are going out a couple times a month, and we're talking a lot about our feelings, our relationship, and keeping tabs on each other. We are making scheduled one-on-one time with Lizzy and Tommy. Caleb, being 10 months, gets an appropriate level of baby snuggling. We're trying to double down on faith-building priorities, especially since Clinton and I have to take turns frequently staying home with Emma when counts are low.

We're still focused on these goals we set in the hospital in September.

Emma's Pediatrician

Got a call this morning from our pediatrician.  She was just saying welcome home.  And asking how we are doing and what's next.
I like her.

Doctors

I want to tell a bit about the terrific doctors we have. When we checked in, the weekend Oncologist came in wearing shorts and a t-shirt. He introduced himself as Luke, and began by talking to Emma. He asked about her family, about what she likes to do, her favorite things. Then he examined her. Then he talked with us.

Luke was the Fellow and Alli was the Resident over the weekend. Monday came and we met Dr. Bruggers, the attending Oncologist, and Doug, who will be our Fellow for the next few years.

30 minutes after we got the diagnosis for sure, and when Doug won the coin toss or whatever decision gave us our Fellow, Luke came to our room. He said to us that he was sorry, reassured us that this was the best place we could be, and knelt down by Emma's bed and played ponies and polly pockets with her for 25 minutes. Then left.

Alli is beginning her Residency, and she leads the discussion during rounds. Each morning, Alli, Doug, Dr Bruggers, and 7 other people meet up, plus our nurses and the parents, and they discuss her case. They go over her latest labs, what she's eaten, her medications, her vitals, how much she has peed, what procedures she has had and which are scheduled. 14 people standing around with clipboards, focused on my 4-year old. Humbling.

Later, Doug comes with either Dr. Bruggers or Alli to answer any of our questions. Doug has finished his residency and is into his Fellowship, so he is officially Emma's doctor. He works with an attending doc, who we will meet, and who is his official mentor. During our hospital stay, though, our attending doc was Dr. Bruggers. See the hierarchy? Wow.

Alli, the Resident, is pretty competent; but she is just beginning to specialize in pediatric oncology. She checks everything and mentions everything. We ask her all kinds of questions and she tells us what she is looking at.

Doug and Luke are Fellows. They are smart guys and they know a lot. They can answer most any question we throw at them. Luke is a great big kid. Doug doesn't wear socks and has hair like Flynn Rider... long on top that he frequently pushes back. They both discuss all kinds of details and tell us what things they are looking at.

Dr. Bruggers has been in Pediatric Oncology for a long, long time. Nothing surprises her, and most everything that caught Alli's attention, or Doug's or Luke's, Dr. Bruggers would explain why it was happening and why it was not a concern or how they would handle it. She seems to have supreme confidence, and is constantly teaching the others and the parents. She isn't cocky-confident; but she is experienced-confident.

The team is in regular conference with a heap of children's oncologists around the world, sharing new ideas, conferring on questions, and collectively trying to improve the success rates for the kiddos that they work with. 

How Did They Know

A couple people have asked how we knew to come to Primary Children's. The pediatrician at the Kids Care on Saturday. I'll try to get my muddled brain to tell the events.

After examining Emma, she told me she wanted a blood test. I was alarmed and asked why; I thought maybe an x-ray would happen looking for hairline fractures. She said she was concerned about the bruises and the bone pain. This is the first I heard of bone pain; but it made sense because of what Emma had been saying.

I didn't jump to leukemia, but when I asked why a blood test, the doc said, "well, we want to rule out leukemia right away." And I was all "Oh yeah, rule that out right now. Blood test here we come."

We went over to the lab in the hospital, drew blood. I remember she ordered a CBC and a CBC diff. Didn't know what they were at the time; but we're getting those pretty regular now.

They came back suspicious and the doctor came in and asked where my husband was, and said it looked suspicious for Leukemia. Luckily at that moment Caleb, who had joined Emma and I at the instacare, got bored and a bit fussy, so I couldn't exactly melt. The doctor invited me to call Clinton and we would talk about what to do next. She said she hoped she was wrong and it could be something else.

Clinton and I were a bit panicked and finally figured out that the quickest way to get it going was for him to get the kids ready and into the car, and I would figure out where he was dropping them. My sister Jen lives 2 miles from my house and 2 miles from the hospital. Hard as it was to tell Clinton to get to the instacare, it was hard to have to say "Leukemia maybe" yet again. Luckily, my #1 go-to babysitter Anna was home at Jen's and Clinton was at Kids Care with me pretty quick.
They told us that the weekend might hold up some things, and since we didn't look critical, we could wait until Monday if we wanted.

Would you wait?

The weekend pediatrician was fabulous. She explained why she suspected Leukemia, but that she could not absolutely diagnose without the tests. She outlined what tests they might run and what we might expect for the next couple of days. She also reiterated that she didn't know what we had, that it might be something else, but that we should really take leukemia symptoms seriously.

After gathering a few things from home and getting a quick shower, we were directly admitted to Primary Childrens Hospital.

And That's why we came to Primary Children's with suspicions of Leukemia. 

Emma's Pediatrician

Since we headed for Kids Care (pediatric instacare) on a Saturday, Emma's regular pediatrician didn't find out until Monday. After regular office hours... probably about 6:30 or so, our Pediatrician's face appeared in the door. She was here in normal people clothes, without stethoscope, and wearing a visitor badge and not a doctor badge. She isn't part of our oncology team; but she wanted to know how her girl is doing. She talked with us and with Emma. Reassured us about what a great place we are in. She did her residency in this unit.
She brought Emma a present. Something little and unique and cool, and clearly not something out of the office sticker box.
And she called again today just to check on us.
We got a good one here.