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. 

She Eats

Emma didn't eat a lot in the hospital. Like really not a lot. A few strawberries, half a chocolate milk, and a nibbling bite of PBJ provided it was cut in squares and not triangles. That's it for a day.
She is taking a steroid, day 6 now, that is likely to make her super hungry all the time. Also it may make her grumpy grumpy.

We started seeing the grumpy in the hospital; but no appetite.

This morning she's had a few glasses of milk with her two cheese sandwiches. While that isn't teenage boy appetite, it's fabulous to have her voluntarily eating.

There is a bit more energy in her this morning. Of course as a rule, good days interweave with rough ones. We'll probably use up a good amount of that energy in a trip to the lab for a blood draw this morning.

Regarding Choices

Memo to me:
Next time I am discussing seven separate pediatric cancer prescriptions with a nurse on discharge day, and he offers me the option of having them filled by the hospital pharmacist and brought to my room, I should really consider it.

I am really cost conscious, so I never go to the hospital pharmacist, understanding them to range on the pricier side for the same stuff.

Convenience, friends, might be worth something. Especially under the following circumstances:

• When you've met your deductible and the prescriptions are part of what's 100% covered for the rest of the year. Zero copay on $350 or zero copay on $370 isn't actually a difference.
• The pharmacist is not 1 more stop, but 2 more stops because 7 prescriptions aren't a 5-minute process.
• Even if stores are open 24 hours, there are only a few 24-hour-pharmacist locations, and so the lines are long on Saturday evening.
• Your kid was just discharged, is tired, and needs one of those prescriptions tonight.
• Whether or not you know it, pediatric forms of this stuff might take time to compound or not be regular stock. The pharmacist may call the doctor and ask for a variation, and the doctor might not call right back. Then it's 3 stops and some phone calls and waiting.
• Sick people come to the pharmacy for prescriptions, and I have an immunocompromised child at home.

This one was my fault. For the first time in a week, I had control of something, and I chose my default without considering. I could have made a better choice. It isn't a big deal, just make a note for future reference.

Actually, upon looking at this list, I think I will print and bring to the PCMC inpatient pharmacist that I talked with about my prescriptions. He didn't recommend one way or the other. Maybe he doesn't want to pressure me into buying from the onsite pharmacy, or maybe he just hasn't considered it this way.

Caleb's Bottles

Last Sunday, Jen took my 3 kids with her family of 8 to church. We had just gone to the hospital the previous night. Before the service began, some people asked who her extras were, and she explained about Emma. Lots of offers for help, outpoouring of love and concern. One gal, Becca, runs a daycare.

Becca: "What do you need?"
Jen: "I can't get the baby to take a bottle."
Becca: "I can help with that." Caleb is 7 months old and has rarely had opportunities to not want a bottle. I'm always back before long.

Becca came around 2:00 with a grocery bag of different bottles and a grocery bag of different formulas. She has the experienced eye that can tell whether Caleb hated each nipple, formula, or both. She had the patience to work through his furious angry fighting.

After several tries, they found the right combination of nipple and formula that he would eat, and she stuck around to make sure he drank it all. She held him and soothed him, played with him until he was happy, got him asleep.

She left around 7:00. She came back 5 minutes later with 2 more identical bottles and another can of the formula he had chosen. She was there 5 hours focused on my baby boy.

I have never met Becca. I am so glad that we get a front-row seat for a parade of kindness and generosity and greatness.

Home

Emma is home.


Every other word is just words. There is a deep breath and a relieved sigh. Really, the best news in a week: Emma is home.

What a Week

Last week we were rushing about trying to get ourselves fed and dressed for two soccer games. We have been in this incredible children's hospital for a week. Our lives are taking a different road than we expected.
I shared on facebook last Saturday a meme that begins with a common sentiment, God will not give you something that you cannot handle.
It was funny and it kind of relieved a little stress; but I don't think that the concept is entirely true.
God does give some things that we can't handle yet, and helps the willing gain the ability to handle.
God does allow some things that we simply can't handle, and the only possible solution that is a win is to lean on him. To trust Him.  To have faith.
I believe God wants to refine us, to polish us, and to make us into something better than what we are.
He wants us to tear our pride muscles a bit and grow some humility.
He loves us. Oh yes, He surely does.
He gives us things that we cannot handle, and then we choose whether to let Him make us into somebody who can handle that hard stuff.
I did not ask for this. I do not want this. But we are going forward in gratitude and faith. We are going to come through a bit better, I hope.
What a difference a week can make.

Day 3

After a transfusion on Wednesday, Emma's heart rate dropped like a rock and it has been steady in the fifties for a couple days. The theory? Her heart has been working so hard long enough on anemic blood that now, with all those red blood cells bringing all that oxygen, her heart is totally coasting. probably will even up after a few days.

No fevers again for the second day. That is pretty awesome.

She is still pretty seriously low on immunity, but the doc let her go for a walk after visiting hours tonight, provided she wears a mask. Yes, the photo shows two masks: she likes Mickey better; but the green one is the required level of filtration.

She is cleared to go home tomorrow after her next dose of chemo, provided she responds well to that. Cross your fingers and hip hip hooray!

C is for Crown

Emma's cousin, Zoey, has a preschool group. This week they are learning about the letter C. Zoey made a crown, of course, and she made it specifically for Emma, since Emma is sick. Zoey loves crowns too, and she and Emma have argued over crowns before.

Thanks Zoey!

Feeding Jen's Bigger Family

Two related stories:
We got here Saturday evening, and Jen took our other 3 kids to church with her family on Sunday. Jen and Jeremy have 6 kids. Jen's ward [congregation] totally supported and loved our kiddos that day.

My Aunt called Jen and said since she couldn't do anything for us, she'd bring Sunday dinner to Jen. "But that's 11 people, Sybil"
"No," said Sybil, "The baby won't have any."

So Sybil brought my cousin's wife and daughter, fed my family and Jen's family, and then brought dinner to us in the hospital. The generosity from the Sybil, Daryl, Chad Heather, Maura crowd gave us huge generosity and support right there.

Then Jen's friend, Sue, told Jen not to make dinner on Monday. She and her husband mad a big 'ole kettle of crock pot goodness to feed the family that was feeding my family.

There you go, two stories I wanted to tell. Combined. We are seeing kindness and love from people we have never met. We are so grateful for a network of friends that reaches out into goodness.

Emma's Team

We have started to refer to our support, in my head at least, as Emma's team. Cousins, Aunts, Neighbors, Uncles, Grandparents, and friends. Emma's team includes people that she has never even met her, but that are praying for her and for us.

Before this, Emma had a smaller team of 8 small people and their coach.

Emma's soccer team left her some love notes and a bouquet of candy.

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. 

Shout Out to the Laundry Guys

My brother, David, is a maintenance mechanic at Intermountain Healthcare Central Laundry. Once I got a tour of the laundry and David, or Tech as his coveralls say, showed me the machines that do thousands of pounds of laundry an hour. (Sh David, I'm telling the story) Tech tells me that his big rig machines can get your laundry so clean and they handle the craziest, grossest stuff. Emma gets sterile clean stain-free sheets and blankets refreshed every day. Thanks Tech!

We are learning how to take care of her. The chemo drugs are pretty harsh, enough so that if I am handling any biological products (puke, pee, and other stuff that parents just deal with) from her I need to use double-ply nitrile gloves, and that any laundry we wash with her body fluids on it gets two washes in a domestic washer.

To clarify, we don't have to use gloves to touch Emma; she isn't radioactive, nor is she a germ farm or a radioactive mass. Just that her byproducts have that toxic medication flowing freely. And the drugs are heavy-duty stuff.

Also, we learned that some of these medications might make her a little nauseated.

So... Hey David! Emma is sending some truly toxic stuff your way right now.

If We Hadn't Gone In on Saturday...

Emma's legs and hips are pretty sore today. Blood cells are made in bones, and some of the heavy producers are, as I understand it, long bones and hips. That is, legs and hips. This is the pain that made her limp and brought us to this place. Partly the increased discomfort is because Day 1 Chemo is attacking the cancer where it is: in those sore bones. And also, as I understand the theory, because it is the progression of the symptoms of leukemia.

2 weeks ago she complained of pain. 10 days ago she was limping some. Last week she was stumping around and not wanting to walk. Saturday she had a serious limp. Today she want to be carried to the bathroom.

If we hadn't come in on Saturday, I think we would be here now. Just without the cool Life Flight tour.

True or not true, cannot be proven either way.

But the way I figure it, we'd be here.

The New Normal

Earlier today, I wandered in to the laundry room, pulled some left over pizza out of the fridge and stuck it in the toaster oven, pulled some pajamas and one of Emma's blankets out of the dryer and brought them back to her bedroom to fold and stick in a drawer, then went back in to get the pizza and back past the nurses station to Emma's room.
Now, that string of events could happen any time in my house, except, of course, the nurses station.

I think the adrenaline is finally wearing off or running out. We are starting to look at reality and beginning to realize things that need to shift a little.

We have a few goals for this journey. When we get to the end of Leukemia, we want to be better individuals: Clinton, Me, Lizzy, Emma, Tommy, and Caleb. We want Clinton and I to be a better couple and closer as husband and wife. We want our family to be tighter knit and better as a family. We want each of our children to know how very important they are and their own value as people and as members of our family. Most important, we want to be, individually and collectively, closer to God. And we'd really like to beat Leukemia, too.

We're hoping to invent a new and improved normal.

Chemotherapy Day 1

So this is the official day 1.
Emma has had several extra things given by IV and mouth.
Steroids, anti-nausea, anti-cancer, fever reducer, and a bag of blood. Well, truly, the blood transfusion is still going on... that's a 2-hour thing. It's kind of interesting to see the end result of a blood drive.
I haven't given for a while, what with a 7-month old baby. But seeing the bag hanging there and providing her a very needed transfusion makes me want to drop by the red cross and give a pint.
Day 1.
The first segment of treatment is called induction, and runs 29 days. After they are happy with her reaction to the day 4 drugs, we get to take her home, and then much will be outpatient.
Our list of possible side effects would make a really cool speed-talking caveat on a drug commercial. "Ask your doctor if Chemotherapy is right for you..."

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. 

Life Flight

Saturday night we finished up with the chest x-ray and got on the elevator. Emma was looking cute in her mask and jammies.  A super  nice guy got on the elevator with us and then suggested we go to the roof with him and flashed his badge for the unlabeled roof button.  He walked us out to the life flight helicopter,  showed us around,  and let us ask questions.

Our nurse was so stoked to be Emma's entourage for the night and several other of our nurses and doctors are a touch jealous.  Very few get to check out the helicopter without a life threatening emergency. It was pretty cool.

We love how so many go out of their way to do nice things for the kids there.  A mask is kind of like a backstage pass there.

USB Port, Lumbar, Support

First off, we love love love the love notes that are pouring in. That is very sustaining and strengthening stuff.
Yesterday Lizzy visited,  today Tommy came up for a bit. He was not really comfortable with all of it; but he did like the buttons that adjust the hospital bed.
Emma had an echocardiogram today to provide a baseline measure of her heart.  Later she got her IV port,  which is truly like a USB. medicine in, blood out. Whatever is needed, cross platform.
While she was under,  they did a lumbar puncture  to get spinal fluid for testing and they also gave Emma her very first dose of chemotherapy.
Officially,  tomorrow is day 1.
Clinton and I are trading nights at the hospital.  Tonight at about 10:15 I arrived home. The mail was in, the front door repaired,  my dishes washed, my kitchen cleaned, the trash out, toys cleaned up in the family room.
We aren't strong enough to handle this on our own.  We are so grateful that we don't have to.
Tomorrow starts the official Day 1 of treatment. 

The list

I wasn't sleeping after about 4:30. I woke up to go to the bathroom, and exhaustion has lost it's bite, so I couldn't get back to sleep. My brain is whirring about what we've learned and what we don't know, texts and emails I haven't returned, things Clinton should bring to the hospital when he wakes up, worries for our other children, both dealing with the new changes and stress, and also the things that concerned me Saturday morning before all this exploded. I've been also thinking of all the amazing and incredible things that we have experienced since Saturday. We have seen such love and support and generosity. We are so grateful for the people who have helped to make this a bit bearable.
Some of the things I hope I can write about while I still remember them and before they get blurred together:

Life Flight (don't worry, it's good)
The start of the story
Emma's pediatrician
Jen's ward
Caleb's bottle
Sybil
Luke playing with Emma
Elliot
The Mass of Doctors
The false negative and the diagnosis wait
Xbox
Blankets
Church on Sunday
Friends of Scouting
My connection with the foundation
Dinner from Maryland
Music
The Call button
The re-key
Lizzy Tommy and Caleb

There are other things. Some things are a little more private. We have a few stories, though, since coming here.

We are so thankful for the love that is surrounding us and filling us.
Emma is doing pretty well. There have been a few things that aren't great here; but there have been some great times. But there is also a fair amount of Emma sitting either in her bed or on the couch with a pile of little toys, about half Polly Pocket Princess parts and playing with them happily. The nail polish bottles have been married a few times and the crayons have been sorted, filed, lined up, and re-boxed. Her trove of toys has been sorted into hers and the hospital's a few times. If you've watched Emma play, then you'll know that this is all very Emma. And encouraging, or at the very least positive.

She has drifted back to sleep after a tough blood draw. She had to have a new IV placed last night and it was pretty rough. Then she fell asleep barely consoled. So to be up for more poking at 5:30 left her a little perplexed. Later today she will get an IV port which will reduce the pokes. But she'll also get her first bit of chemotherapy, so I think for the foreseeable future there may be a few clouds among our silver linings.

Thank you all for your love and support.

Here is the first badly taken backlit picture from Saturday

The Punchline

Merinda and  Clinton will both be updating here. First message from Merinda.
So it's been hectic here since around 5:00... some 6 and a half hours ago. I want to update you on everything that has happened today, but I'm going to skip right to the for-real diagnosis:
Emma has Pre B Cell acute lymphoplastic leukemia.
Commonly called ALL or Pre B ALL
Three-letter Acronyms, or TLAs are going to become part of our life,

I plan to put any updates, any information we get that seems worth sharing right here.
Then we'll direct all of our super amazing team of loving support here for updates. It turns out that we have a really awesome powerful support network, and we couln't be happier about that.
Drop us a line in the comments. We'll read them.
Thanks for joining in our journey.

-Momma

Leukemia

Got the diagnosis that we're going to stick with yesterday around 6:00. Emma has Pre B cell Acute Lymphoblastic Leukemia, or ALL.
The most common cancer for kids is Leukemia, and the most common Leukemia for kids her age is this ALL business.
They refuse to tell us stats because Emma isn't a statistic and her journey is going to be Emma's story, not a statistic; but this variety of cancer has great cure rates.
Obviously they don't like telling people they have cancer; but this is their favorite to diagnose, if you can say it that way without being ghoulish.
It took a few hours for things to settle down, but since we're in for a long haul, and since we have a HUGE support network, we decided to take the social worker's advice and put up a single place for Emma updates.
Thank you so much for caring about our little Emma to come here.
I've added to this journal the large-group-blast-emails we sent to our family over the last couple days to bring you up to speed on how we got here.
I doubt I will put so much information so quickly again.
Thank you all so much for loving us enough to necessitate this kind of communication tool. We're overwhelmed by the love we've experienced, and that's before we actually really told anybody outside our family. Thank you.
With sincerity, Merinda

Email Monday September 23rd around 3:30

Rescind the positive diagnosis. The flowcytometry came back negative, so we don't DEFINITELY have leukemia. Though we still might. Might be something else. Maybe aplastic anemia, maybe a virus coctail, maybe leukemia, and maybe something different.

They are as eager as we are to have an answer. Right now it will just take a bit of time. We don't know the final answer, but they sure do know a lot about Emma right now.

Procedures are put off until we have a bit more conslusive diagnosis. We are so pleased with the folks here. At one point there were 12 doctors and nurses gathered around reviewing Emma's case with us, for a total of 14 people in on the conversation. They are smart, they are responsive. They are concerned, and they are so great with Emma and with us. A pair of nurses just came in to let us know that the team is working on it, and we'll know as soon as there is anything to know.

Thank you all so much for supporting us. We are loved and we feel that. Thanks so much.

-Emma and the folk

Email to family Sunday Night

We have a positive diagnosis. This is Leukemia for sure; but we need some lab work to be sure of what variety we are dealing with.

Best case scenario has us out of the hospital by Friday or Saturday. Another scenario has us here for a month; but we're kind of expecting about next weekend. That seems like the likely diagnosis, anyway.

There are a lot of "ifs" at this time; but it's going to be kind of a big deal for the next 6 months for sure, and probably last for 2 1/2 years. Again, all depends on the specifics.

We'll be starting one or another variety of chemotherapy -- probably Tuesday; though remote chance at tomorrow. 

At the same time, she's going to get an IV port - which is kind of like her very own USB hookup for drugs. Maybe Clinton will install Linux on her later on.

Thank you all.

Email to family Sunday

Update,

White blood cells are low, red blood cells are low, platelets are low. This could indicate a few different things,  among them,  leukemia.

Chest xray shows a little bit of enlarged on one side of the heart. This could indicate a few different things, among them,  leukemia.

There was also a bit of cloudiness in one lung, which looks a bit like pneumonia, or it might be an indicator for leukemia.

She has a lot of bruises on her legs, feet, and back. We don't suspect physical abuse, but even aside from that, she's an active kid; but the bruises can also be an indicator for leukemia.

She's been complaining of pain in her feet and legs- and where it hurts moves. Serious limping sent us to instacare Saturday. Bone pain can mean growing, or other things, or Leukemia.

Emma's blood under the microscope doesn't definitively tell. They see suspicious things, but no absolute. 

We are waiting for an operating room. Once they pin together all the broken elbows and stuff, we will go in for a bone marrow aspirate and biopsy. The marrow will tell definitively whether we have leukemia. They have a couple other possible diagnoses; but you can see the evidence.

They don't allow plants, so no flowers.

Primary children's is a good place for a 4-year old to be in the hospital. Emma has a pile of polly pockets, an xbox, coloring books and crayons, a pinkalicious puzzle, and princess memory, in addition to cable and movies. She can request any other toys and books, too.

We went to 30-minute sacrament meeting. Our ward is on alert.

We will let you know anything else. Thanks so much for prayers and support.

Clinton,  Merinda, and Emma

Email Saturday September 21, 4:53 pm

Hey Family,

We took Emma in to the instacare this afternoon. Limping, complaints about her feet hurting. She wouldn't play soccer this morning.
Doc ordered some blood tests. We are on our way to Primary Children's Hospital. We will be there at least overnight, and Emma will be in likely for at least a week.
They are pretty sure she has Leukemia, but we don't know what kind. The pathologists at our local hospital are off for the weekend.
We'll let you know more as details become available.
We may or may not answer phones or respond to texts promptly.
Emma could use some prayers if you don't mind.
For right now, Jen has the other kids, and I'm sure we'll make adjustments there as well.

-Min