Reflections on a cancerversary

Emma was diagnosed on the 23rd of September 2013.

It's her cousin's birthday, too.

We have met many new friends over the year. We have seen so many blessings and such goodness from so many places. One new friend is a pen pal, David. He and his wife, Natalie, write pretty regularly. I hope they won't mind if I quote from their most recent letter:

I am not sure how you mark the one year anniversary of a cancer diagnosis. Is it an anniversary? Is it a commemoration? Perhaps it is a celebration because of the tremendous experiences that have come to your family over the past year. Maybe it is a way to mark the friends that have come into your life from hospital staff, to ward members, to family members that have shared so much of this journey with you. More likely it is acknowledge that it has been a roller coaster of emotions and this one year mark is just another stake in the sand that helps to hold your tent strong in the storms of life...
My hope is that your family is stronger, your marriage is stronger, and your faith is stronger. All in all that is a pretty good thing. The cost is high, but the outcomes have been life changing...

He's right.

There are many emotions, lots of thoughts, lots of memories.

I put Caleb in a nap this afternoon and held him extra tight, remembering the week last year when I barely saw him and sweet Becca Malone helped wean him and find his favorite bottle and formula.

Shawnya's classroom is now the home of our school's reading aids, where Emma enjoys "lunch bunch" getting caught up in reading skills since she missed preschool. But a year ago, that portable classrom was where Lizzy went after school. What a blessing that Clinton's sister taught just one year in this district, the year we needed her the most.

I've been thinking a lot about the family whose 4-year old is complaining of hurt legs, or who is pale or bruising that don't know yet but are about to be plunged into this world of cancer. I'm mourning a bit for their innocence and hoping they have the courage to pull together. Somewhere today, there are several families getting their first introduction to A.L.L. I am thinking of them a lot.

Mostly, though, I am grateful.

I am grateful for the researchers who have figured out how to fight leukemia over the last century.

I am grateful for our doctors and nurses who followed a career into pediatric oncology - what must be a heart-rending profession on so many days. They are dedicated and compassionate. I will love them forever.

I'm also grateful for the rest of Primary Children's Hospital - the ER staff, the other doctors, nurses, techs, pharmacists, receptionists, administrators, cafeteria workers, volunteers, cleaners, and laundry mechanics.

I'm grateful for the other health professionals. Our home health nurse, our own pediatrician, the doctor who sent us to Primary in the first place, the lab people, and on and on.

I am grateful that CapitalOne picked Emma for their grand prize - as our medical bills are under control right now.

I am grateful for the gifts of time, food, money, drive-through gift cards, toys, blankets, hats, service, prayers, cards, art supplies, and more.

I am grateful for Emma's Team. For all the people that have put their efforts and interest into Emma and our family. Friends, family, family of friends, friends of family, and more.

I'm grateful for Make-a-Wish and for Give Kids the World. I'm grateful for Camp Hobe. I'm grateful for HopeKids and for ACCO.

I'm grateful to my facebook mamas group, who support and love each other and understand what it is to be moms of cancer fighting cuties.

I am grateful that I still have my Emma. I am grateful for my little family who are, I think, stronger and closer together.

I am grateful for my faith. It sustains me.

Marriage, Relationships, Stress

On September 24th, Emma went in to surgery to have her port placed and to get a lumbar puncture, her first dose of intrathecal methotrexate and the first look at her cerebral spinal fluid. The diagnosis was not a day old, though she had been in the hospital three days.

We were pretty sure our other children were fine; but we had passed them off entirely to family.  Clinton's boss and coworkers were supportive; but he had projects that he was simply ignoring.

We sat in the surgery waiting room, the first "break" since it all began. I saw a chance to talk and process -- and I needed to talk. The woman need... the biological Must... to talk and process and vent. Emotionally, we haven't actually bought shoes until we have gotten an opinion on them. Cancer wasn't real until I could talk it out. Maybe I'm being a touch dramatic with my description, but only a touch.

There I sat next to Clinton, ready to talk, and he was was playing Lego Star Wars on his iPad. I tried a couple conversation openers; but he barely responded with some short, non-conversational reply that conveyed the stereotypical, monosyllabic, manly grunt.

Trying to be respectful of his need to use the Force and to play with virtual knobbly bricks, I checked facebook and started to set up a blog. We have always been a team, so I needed his blessing to go forward with publishing updates about Emma to the world wide web. His reply: We need to talk about it.

YAY! He wants to talk!

But he didn't want to talk, as it turns out. He wanted to fight squared-off Storm Troopers. He wanted an indefinite waiting period before sharing all our troubles and personal details on the proverbial six o'clock news.

Steam and flames were beginning to leak from my stifled feminine psyche. A Wall was going up around his heckled, henpecked, male psyche.

I went to get a drink, and tried to understand why he was being so... so...

And in that moment, I saw Clinton trying to protect Emma. I saw him not just playing games; but trying to grapple with the awful reality that he hadn't yet been allowed to internalize. He needed to shut down and process. He was trying to get some control and was certainly not ready to issue a statement. He just needed some space.

In that moment, I saw him differently. I got my drink and tried a new conversation opener:

"You need to play a game right now, to deal with all this."
"Yes."
"You need some space to internalize, and you need some down time."
"Yes."
"That's how you deal with stress."
"Uh-huh."
"That's not how I deal with stress."
He paused his game and looked at me. "I'm sorry, Honey. What do you need?"

We discussed WHY I needed an outlet. How many texts and emails and phone calls I had not returned, how I process, and that I needed to talk or type or run or DO something. I outlined what I thought were his objections to a blog, and asked what else. He explained his concerns. We discussed what precautions would make it nearly ok for him.

And then, right there in the surgery waiting room, we hashed out our personality and character differences and our emotional needs. We listened. We talked. We took turns.

Then, he gave me his bluetooth keyboard and returned to fighting the Dark Side, and I started a caringbridge page that is now this blog.

That awful stressful day in the hospital while our daughter was getting a port placed for 3 years of blood draws and chemotherapy, our marriage took a huge step forward. I learned to step into his shoes and try to see how he thinks. He learned to step into my shoes and try to see how I think. We saw our differences and found a way to serve both our needs. We both compromised a bit; but it was easier once we saw each other.

We have had a few of these since - moments when we stop worrying about "what we want" and look at the basic need - the WHY.

Within a few hours, we had adopted our four goals.

Those are at the core of most any decision we make lately. We are getting better at being a team.


I don't know where the stats come from; but I hear that 80% of parents of pediatric cancer patients divorce. 2/3 of parents of children with ADD divorce. Premature kids, twins and triplets, autistic kids, kids with disabilities, all seem to have higher rates of divorced parents.

In the stress of the moment, a selfish comment or a misplaced accusation can plant the seed of resentment, can lead to a grudge. Then when the stress continues chronically for months and you don't make an opportunity to stop and evaluate the marriage, you get in the habit of not liking each other. You expect hostility and you start every encounter defensively.

I don't want to get in the middle of anybody's relationship; but sometimes I want to shout at people, "STOP and take a second to SEE your spouse!" He probably isn't a childish jerk, and she probably isn't a nagging ___. Under stress, we all tend to be our not-best selves.

Take a drink and try to understand why. Pause your iPad, and look up. Forgive, ask, understand, give the benefit. Figure out a way that you can both get what you need. Figure out a way that you can both empower your spouse.

Don't wait until the stress is past. Step back and see the whole picture. In an emergency get the bleeding stopped; but don't go to bed until you've made your marriage important.

Going it alone isn't going to help. Divorce won't solve anything. You need a buddy, you need a partner -- for your own emotional self, but also logistically and financially. Somebody has to carry insurance and make the house payment and keep a job going. Somebody has to go to doctor appointments, manage prescriptions, clean up puke, and stay with a kid that can't go to school or day care or whatever. Somebody needs to give you a break to go scream, vent, play games, go to the gym, or otherwise decompress.

In stressful times, don't dog your spouse to your friends. Don't. Be each other's best cheerleader and best fan. Build up your buddy as much as you can, because you need your buddy to build you up. Defend and protect that marriage; because you need it more than you ever did before.

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. 

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 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