The Weather

Having driven sailboats for a living for a number of years, I have developed some skill in weather prediction. Temperature and wind direction tell you a lot. I used to be proud of being able to take a look at the sky, feel the breeze and more or less know what to expect for the next 24 hours. Farmers do the same, maybe better. People who commute on motorcycles do also. This sense you develop isn't perfect and doesn't apply to every situation, but works pretty well.

Before you start calling me in the morning to get my weather prediction for the day, I have to say that I've made a few really bad calls. There was the time we took a night sail from Norfolk to Cape Charles and spent a couple of hours getting our teeth kicked in by a powerful line of thunderstorms. My decision to sail that night was based on a bad prediction of what the unsettled weather would do.

Maggie and her copilot reading the manual while taxiing down the runway

Then there was the time I left Morro Bay in the evening for what I thought would be an easy ride to Monterey. Despite knowing the prevailing winds off the California coast were typically cold, northerly and brisk, I was lulled by a sweet, warm southerly and a strong cup of coffee after dinner. Rough night off the coast of California with a short crew and nowhere to hide.

In both of these cases, I was making predictions based on the incorrect assumption that I knew what was going to happen. Everything looked familiar and safe. On the Morro Bay to Monterey run, I didn't even have local knowledge to draw from. On the Norfolk to Cape Charles sail, I didn't heed the basics: Unsettled weather is often dangerous.

So when the oncology team reduced Maggie's chemotherapy dosage today because her white blood cell count is too low to take the full dose safely, I wanted to keep sailing. I didn't want to delay, because I worry how it will affect our destination landfall. My gut said not to slow down, not to stop. But in fact, this isn't my home port and I have no idea how to safely predict what will happen. Fact is, I'm not even driving the boat.

My prayer today: We don't know Your plan and sometimes that makes us really nervous. Trust in You is not always easy. We will keep working at it. Please be patient.

Sick Body, Healthy Ego

The other night, while toweling Maggie off after her shower, I was telling her about the friend of a friend who is a survivor of ALL.

"What's ALL?" she asked.

"It's an acronym for the long name of your leukemia: Acute Lymphoblastic Leukemia.  Acute is A.  Lymphoblastic is L.  Leukemia is L again.  A-L-L."

"I get it!"  she brightened.  As I began to revel in the intelligence and maturity of my six year-old, she continued, "Acute!  A-CUUUUUUUUUUUTE!  Like me!  Or a puppy!"  And she flashed me a movie star smile.

That's us.  Rainbow ponies up the ying-yang.

Maggie goofing around with the photo booth feature on the computer.

The ER in February

Maggie woke up with a sore throat and minor cough. Having been raised by an RN and a military officer, it has taken some effort to take little symptoms like this seriously. But a bad infection at any point during chemo can lead us down a very different path. So we check her temp and call the oncology-hematology clinic. They tell us to keep an eye on her with hourly temps.

Fast forward to 5PM. Kate calls to say Maggie has developed a fever and the doctor on call wants to see her in the ER. I ask Kate to tell this fever to develop only during normal business hours.

During the 1-1/2 hour drive to Norfolk, Maggie is very talkative. She tells me everything about everything. And before each thing she first asks me if I know what. And you know what? It didn't bother me, because I'd rather come up with 529 ways to cheerfully say, "No, what, honey?" than drive in silence with a mopey kid.

The ER was packed with sick kids. As they admitted us, I looked at the monitor filled with first names, ages and symptoms. Everyone had a fever. Everyone was sick enough to scare their parents into an 8PM trip to the ER. Some of the kids were wearing procedure masks. Some were just coughing. No one looked rested or comfortable. They were being patient, because they needed help and had nowhere else to go.

When you have Leukemia a lot hinges on blood work. The upshot of this visit was that Maggie's numbers looked solid. She was sick, but with some IV antibiotics, had the resources to fight it off. While she waited for these to finish, she watched Lion King for the first time. When she said she'd never seen it, the nurse threw me a dismayed look, as if I'd failed to teach her to eat with a fork.

We were discharged during the scene when the view pans across the devastated Pride Rock after years of poor management by the lazy uncle Scar and his greedy hyena minions. Pride Rock is a wasteland of spoil and deprivation. We exited through the waiting area of the ER, back the way we came. Not much seemed changed in the three hours we'd been inside.

I was ready to draw a comparison between that sad scene in Lion King and the waiting room. I was ready to see devastation, waste and depression. But what I saw was a full staff cheerfully and energetically taking care of lots of sick kids, one at a time. They even had time to say to Mags, "Feel better, honey!"

The waiting area looked the same because the supply of sick kids and worried parents never really dwindles. It ebbs and flows. Sometimes it floods. Sometimes we are a part of this tide. Other times, if we are attentive, we stay mindful of suffering and do what we can to ease it.

My prayer today: Heavenly Father, protect and sustain those who sharpen their skills and awareness to ease the suffering of others. 

Bad Tempered Camel

In case you thought living with cancer was all nausea and hand washing, here's a picture of Maggie imitating a bad tempered camel. She's studying desert habitat with her mum/teacher.

And here she is imitating a snuggle bunny in her new prayer shawl set given to her by Don & Mary Alexander. She calls this set "Ramen" for obvious reasons.

Checkpoint!

Maggie just finished the last of her Mercaptopurine series, the oral chemotherapy we have been carefully administering here at home. The stuff is so poisonous that Kate wasn't able to safely administer it as she's currently breast feeding. Maggie had to learn how to take a regular tablet. There were a few tears, but we learned how to get it done. It was a small mountain that Mags and I climbed together. Consolidation is over and Interim Maintenance has begun.

When I told her this was the last pill, she cried. I asked her and found she was going to miss taking the pills.

What?

After talking to her about it, the best I can figure is that each passage from one period to the next is both a triumph and signal that a new, perhaps more challenging period begins. These were tears of relief, of pride and of trepidation. That's a lot of complex emotion for a freshly minted six year old.

My prayer today: Help us to accept transitions eyes wide open and with grace. Help us to see Your will and the path You have set for us. You walk with us. You love us. We trust. Amen.

Teaching Us How to Love

The phone rings and it's MaryAnn. She goes to our church and lives alone in our neighborhood. She and Kate talk for a few minutes. I hear snips of the conversation: "...fine... cheerful... Florida...". They hang up and I ask how she's doing. "Great. She's checking in before leaving for Florida to see Mike & Tina. They are taking her to a Miami Heat game."

When Mike and Tina are in town (they are snowbirds) we see them every week both in and outside of church. They recently sent us a Hogwarts Care Package from the amusement park in Orlando. Mike texts me the weather in Florida and I text him a picture of their home here in town. We both pray for their son-in-law who is battling metastatic cancer.

Last week it was Kathy calling. She wanted to say just that it was great to see Kate at Mass. With Maggie's immune system compromised, it took us a bit of time to work up the bravery necessary to take her to a church full of people. I told Maggie just to flash peace fingers at the Sign of Peace. I told her no hugging. She was delighted to find that almost no one felt the No Hugging Rule was important and hugged her anyway. Lots of hugging that morning. Kathy called to recognize how nice it was to see us all together. This is the same Kathy who never forgets to send a card at our anniversary or any of the kids' birthdays. Every year, God bless her.

These folks are all in their seventies. They cheerfully, prayerfully keep us close to them. They teach us how to love with small, consistent contacts. They don't put it off for a big glut of conversation at some yearly event. They don't wait to need us or for us to need them. They look at time differently. They don't let us go too long without them. I'm pretty sure they do the same with God.

In Other News...

Ellie has her first tooth: