It’s Sunday, October 14th, 2012. Down in St. Martin, Carina, Piper and Michelle are enduring Tropical Storm Rafael. Luckily it wasn’t too brutal, but from what I’ve heard, it dumped a lot of rain, knocked out power and water for long stretches of time, and threw up an impressive wind storm. Rainy season, hurricane season, and hot ‘n humid season are all at their peak in the Caribbean right now. Although I miss Carina and Pipes terribly and wish I was with them, it might be stretching the truth just a little if I said I wish I was on the island right now.

Autumn in Minnesota:

Meanwhile, I am enjoying the most beautiful fall weather in recent memory, and I’m doing so with the company of Tanner, who has been with me all along, and Andi, who just arrived on Thursday, September 27th when we flew her back to the States for emergency medical tests.

It Started at Girl’s Camp Last July:

In a previous blog post, I shared how we came back to Minnesota earlier than we otherwise would have so we could send Andi to girl’s camp with her friends from church.  She had a blast! But, she also came back with something strange:  Swollen ankles.  We didn’t think too much of it.  I massaged them for her, but otherwise, we ignored them. Over the six weeks Andi was in the States, the swelling went up and down.  We watched them, but didn’t really know what to do about it.  Soon-to-be Dr. Crookston did some research, which was inconclusive… too many possible causes.

Not long after all the girls got back to St. Martin, the swelling got worse. Much, much worse, to the point where people were looking at her legs and exclaiming, “Andi! What’s wrong with your ankles?!?”

Wanting to get to the bottom of this, Carina took Andi to see Dr. Deketh, the Dutch doctor who runs a clinic not far from AUC. We’ve seen our fair share of this good Doctor since we arrived last December between Piper’s chin, Cari’s ear infection and Michelle’s staph infection.

He took a blood sample for some lab work.  Gratefully, there is a lab on-island to run the tests, and we got the results back quickly.  The results were… confusing.  Deketh, a family practitioner, wasn’t able to offer much insight.  Cari called Andi’s pediatrician back in St. Cloud and consulted with her, who suggested they run the blood tests again, but to check a few other things as well.

Cancer?

When we got back the next round of tests, some numbers had improved slightly, but others had declined. Cari again called the pediatrician in St. Cloud, and the conversation did not go well.  When she got off the phone with Andi’s Doctor, she immediately called me.

“Her pediatrician said the blood numbers could indicate Leukemia.”

The bottom dropped out of my world.

It was 3:20 pm on Wednesday, September 26th.  I got online at work and booked two airline tickets for the next day:   A one-way for Andi from SXM to Minneapolis via Miami, and a round-trip for me from Minneapolis to Miami so I could meet Andi in Miami and bring her back to the Twin Cities.  I then went to my boss, told him what was going on, and told him I’d see him on Monday.  He was completely supportive and understanding and wished me well.  In the meantime, Andi’s pediatrician, Dr. Deketh and Carina all collaborated to get Andi an appointment at Children’s Hospital in Minneapolis.

The Longest Drive Home:

On the way home from work that day, I fought back tears for the first half of the drive, but it was a battle I couldn’t win.  If any of the other drives in rush hour traffic looked over at me, they would have seen a full grown man weeping like a baby.  Back at my in-laws, I packed a day-bag and then paced the floor, not knowing what to do with myself until I could get down to Miami the next day to hug my Andi.  I was grateful for the 5:00 am flight  and had never been so happy to set my alarm for 3:00 am.

Andi’s Trip To Minneapolis:

The solo flight from SXM to Miami for Andi was nerve wracking.  She had to exit the plane and make it through customs totally on her own, and by the time she came out the doors where I could meet her, the pressure and nerves of everything got the best of her, she fell into my arms, wrapped her arms around me, buried her face in my chest, and cried.  But she pulled herself together quickly, and we enjoyed a few hours having fun and bumming around the airport until the flight back to Mpls.

“… We won’t be getting to know each other”:

On Friday, September 28th, Andi I spent most of our day at Children’s Hospital in Minneapolis.  We met with Dr. Nelson, a Pediatric Hematologist-Oncologist who was fantastic in every way.  And the best news is that after a battery of blood tests, x-rays and ultrasounds, he said to us:  “The good news is that we won’t be getting to know each other.  I’m not going to become a major person in your life, and coming from me, that’s a good thing.”

PHEW!!!  Huge sighs of relief all around.

All day I had been texting Carina the play-by-play, and when I was able to send the “It’s NOT Leukemia” text, a great weight lifted from my heart.

What we did learn, however, is that in addition to her blood levels being wacky, Andi’s spleen is also enlarged.  “There IS something going on here” said Dr. Nelson, “but it’s not within my area of expertise, thank goodness.” He then helped us set up an appointment the following week with an Infections Disease specialist.

Children’s Hospital, Round II:

On Wednesday, October 3rd, we went back to Children’s for more questions and more tests, this time at the Downtown St. Paul campus.  This was a much shorter visit, but was also frustratingly unproductive.  We did rule out a list of things we already knew it probably wasn’t, which I guess is good.  And of course, since we were in the general area of Café Latté, we stopped by to pick up one of their world famous Chocolate Turtle cakes.

A Quick Note About Carina:

Poor Cari.  During all of this she was half a hemisphere away and going crazy not being able to be here with her daughter.  This was a hard time for all of us, but I think Carina was taking it the worst.

It wasn’t helping that she has learned enough in med school to be able to converse with the doctors almost on their level, but she wasn’t here to do so.  She would tell me things to ask (“Don’t forget to ask about the AZT XYZ Hema-hyphen-global virus test!!”) And afterwards she would drill me on everything they said.  I would think I was doing a pretty good job, until I stopped talking and she started.

The conversations would go something like this:

ME: We ruled out hepatitis.
CARI: A, B, or C?
ME: Umm, does it matter?
CARI: Casey!!  You were supposed to ask about that specifically!  Did you at least ask about Dengue Fever like I asked you too?
ME: Dengue gives you a fever and chills and makes you sweaty.  (feeling proud for knowing this!)
CARI: Not if it’s the Southern Heffalump AC/DC Diabolical Disney strand!!
ME: Oh. Right.  Well, I think he said it wasn’t Dengue.
CARI:  You THINK? Or he DID?

I could literally feel her palpable frustration from 2,500 miles away, and I felt legitimately sad for her. So, on the next visit, we devised a genius plan: Have the doctor CALL Carina and put her on speaker phone while consulting with us.

(Side Note… Are there any “normal” Phlebotomists?)

Part of this entire process involved a lot of sitting in waiting rooms, a lot of sitting in exam rooms waiting for the doctor, and a lot of Andi sitting in chairs getting poked and prodded with needles.   To help keep our sanity, Andi and I would try and find things to laugh at.

During the course of our visits to Children’s, we noticed a trend amongst the people who drew Andi’s blood.  They were… original… in their choice of hair styles and clothing.  The one pictured to the right was a pleasant young gal, once you looked past her goth hair and makeup and the nine piercings she had on her face alone.  And the one to the left had flaming purple hair.

But hey… they really gave Andi and I something to smile about on days that were otherwise pretty tough.  And they were both good at their jobs.  So no complaints!

Children’s Hospital, Round III:

On Tuesday, October 9th, we went back to Downtown St. Paul for what would be our last round of “What’s Wrong with Andi” visits.  We met with Dr. Mona LaPlant, a Pediatric Rheumatologist.

A Pediatric wha….?

Rheumatologist.  I know!  Google it. That’s what I had to do.

Like Dr. Nelson had been, Dr. LaPlant was incredibly impressive in every way, and Andi and I both agreed (later) that we like her.  After an initial exam in which she discovered that Andi’s liver was also now enlarged, she explained to us that she had read all the notes of the previous doctors, studied all the test results, and was confident that she knew what was going on.  Her diagnosis:

“Probable Lupus”.

In other words: Not All-The-Way Lupus, but something that looks and acts almost exactly like Lupus, and since we don’t have a name for “We Think It’s Almost Lupus, Even Though It Isn’t Exactly”, we’re just going to call it Lupus.

As she talked, Andi began to cry.  And who the heck can blame her?  Life long illness. No cure.  I started to cry.  Dr. LaPlant started to cry.  She excused herself and said she would give us a moment. For the second time in as many weeks, my daughter threw her arms around me, buried her face in my shoulder, and wept.

Dr. LaPlant came back a while later with a speaker phone and we called Mom.  It was a long, long, long conversation.  Much it was medical speak that went way over both Andi and I.  Much of it was also about the emotional impact of this kind of diagnosis.  Lots of talk about what Lupus is, what it does.  She laid out a treatment plan.  She told all three of us what Andi needs to do for the rest of her life to stay healthy.  She told us a lot.  And in the fog and haze of it all, we tried to listen and digest as much of it as possible.

What I swear was at least two years later, Andi and I walked out of the clinic, forever changed.  On the drive back to Grandma’s house, Andi didn’t even try to keep it together.  She was a crumpled heap of a girl sitting wrapped around herself in the car seat next to me.   There would be no stops for cake on this drive home.

As a father, I felt utterly and hopelessly powerless.  What could I do?  What could I say?  I was never taught, anywhere, how to help a daughter through something like this.  I did the only thing I could think of: Told her I loved her, promised her that mom and I would be by her side every step of the way, and drove to the pharmacy to get her pills.

Our Own Storm (Just Not Very Tropical)

That was Tuesday.  Now it’s Sunday.  While Tropical Storm Rafael blows across the Caribbean, we’ve been dealing with storms of our own.  Emotions are raw.  Feelings run high and close to the heart.  I have not seen Carina since September 4th, but I can tell from talking to her that she’s having a rough go of this.  Medical school, all by itself, is a terrible challenge.  Then add this.

Lot’s of people have asked us, “How’s Andi?”  The answer is: It depends on the moment.  Physically she seems fine.  A little tired, but fine.  Her ankles went back to normal a long time ago.  So really, unless you run her blood through a series of tests, or happened to examine her liver or spleen, you would never know anything is wrong.  Thank GOODness her ankles let us know something was wrong, or her immune system would have kept going and caused irreversible damage to her vital organs, and we would not have known it was happening.  We caught it early.

She is doing an admirable job of being strong.  In one moment of particular clarity and strength, she said to me rather cheerfully, “I’ve always wondered what it would be like to have a life long disease.”  At other times, she will confess to me that she is terrified and scared to her core.

Back to the Island?

She heads back to St. Martin on Wednesday, and that in itself was a huge decision.  Can we get the drugs there that she needs?  Can they do the monthly blood tests there that she will need?  Michelle got on the phone and became our island medical detective, making phone calls and tracking down answers.  The answers all came back positive.  Yes, we can do the tests.  Yes, the medication is available.  And yes, Dr. LaPlant is willing to work with her remotely.

In her own words, “I was just getting settled in to my new life in St. Martin, and then I had to leave.”  She started school at Learning Unlimited when she got back to the island and was loving it!  And although she is scared to fly back to St. Martin alone, she is anxious to get back.

And Heaven knows, Cari is anxious to have her.

Gratitude:

We are mindful of the many little (and some not so little) miracles that have helped us along the way.  I just stared a new job with world-class health care benefits.  One of the best (and one of the few) Pediatric Rheumatologists in the country is right here in town.  A somewhat unrelated issue caused Andi’s ankles to swell, and as a result we caught this early and prevented irreversible damage.

“Thank You!” to everyone who has called, emailed, Facebooked, text messaged, or pulled Andi and I aside at church to ask for updates and to offer support.

“Thank You!” to our adopted family / fellow AUC students and spouses who have helped Cari  through this.  I hear about your love and support, and it brings tears to my eyes.  You are angels.

“Thank You!” to the AUC professors who have noticed that one of their students has not been herself, have sought her out, asked what’s wrong, and offered their assistance and support.

“Thank You!” to Grandma and Grandpa Holm for hosting us and for putting up with my shortcomings as I try to find the ground under my feet again.

“Thank You!” to Michelle for putting aside her own life to support her older sister, and for loving my kids as her own.

“Thank You!” to Tanner for being a sweet, stalwart, selfless brother and son who loves so easily and expresses his compassion and care in ways that leave your daddy in awe.

“Thank You!” to Piper for your heaven-sent smile and your unconditional love.  Who knows how much of this you will remember, but we will always remember the little Pipes of St. Marin who made us all smile.

“Thank You!” to Andi for your tender, gentle spirit, for your willingness and desire to be friends with your dad, and for shouldering this heavy burden with remarkable courage.  You inspire me.

“Thank You!” to Carina for your bravery to follow your dreams even though it leads you through nightmares, and for being the strongest, wisest mother and wife a husband and father could desire.

In the end… Peace.

I’d like to end this blog post with some photos I took with Andi and Tanner just today at a park near Cari’s parents house.  Despite the storm that rages outside,  despite the uncertainly of Andi’s new disease, and despite the continued separation of our family…  yeah, despite all that, I can say that I am at peace.  It will all be okay, even if the way is hard right now.

Today my father emailed the lyrics to a song that he and my mother recently discovered. I’d like to share an excerpt:

Weary Not

If the way be full of trial, weary not;
If it’s one of sore denial weary not;
If it now be one of weeping,
There will come a joyous greeting,
When the harvest we are reaping, weary not

If the way be one of sorrow, weary not;
Happier will be the morrow, weary not;
Here we suffer tribulation,
Here we must endure temptation,
But there’ll come a great salvation, weary not;

(“If the Way be Full of Trial, Weary Not,” Deseret Sunday School Songs (1909), no. 158)