Sunday, January 27, 2013

Journey's End

Last night, on January 26, 2013 at 9:47 p.m., Maggie received her final dose of mercaptopurine; her final dose of home-administered chemotherapy.

Her last hospital-administered chemo was delivered a few days before Christmas; she had her final spinal tap at the same appointment.  We'll be going to CHKD in early February for port-removal surgery, a breathing treatment, and a medal ceremony with our Hematology/Oncology clinic family; but for all intents and purposes, she is done with active treatment.

She is done with treatment.

It's entirely surreal, and surprisingly bittersweet.  If a fifth picture had been included in the above series, it would have shown Maggie dissolving into tears. Certainly, she won't miss late night trips to the emergency room, procedures, quarantine.  Her grief is largely for those whom she'll be leaving behind:  her beloved Drs. V,L, and P, the nurses, Child Life Specialist Brian, the therapy dogs, and perhaps even herself.  For the past 28 months, she's been Maggie with leukemia; I wonder whether she'll mourn the loss of this small piece of her identity?

I thought we would meet this day with unbridled euphoria and a profound sense of relief.  Yet, there was no bright and shining moment when life, as we've known it, was transformed.  Given a few more weeks we might notice the difference, but so far, things seem very much the same.  We've been putting one foot in front of the other for so long that it's hard to stop the forward motion.

I've experienced moments of panic as we've approached the end.  Treatment, as terrible as it can be, is also safe.  We have been actively fighting and religiously monitoring.  What happens now?  This "freedom" is bewildering and a little bit scary.  I take some comfort in the fact that we will have regular follow-ups at the hospital until Maggie is 25.  But what will begin as monthly check-ins will soon dwindle to annual visits.

How will we know if she's relapsed?  Maggie's leukemia was caught so early that she never exhibited any serious symptoms; we have absolutely no frame of reference.  Where does one draw the line between tiredness and fatigue?  How does one differentiate, especially on a kid, between a normal bruise and a worrisome one?  (Truth be told, we still - some two years later - have trouble convincing ourselves that Maggie's diagnosis was correct.  All of the terrible changes we witnessed to her health came as a result of the medications she took, not the disease itself.  Obviously irrational thinking, but present nonetheless.)

So we have to negotiate this new normal.  Just as it took us some time to adjust to Maggie's diagnosis, I know we'll be a while adapting to life without leukemia.  We've been first-hand witnesses to the preciousness of each day; how can we waste even a moment worrying about what might occur?  As much as I'd like to think my anxiety has the power to change things, it doesn't.  As we've done before, we'll trust this unknowable future to our known God.  May we come to find that perfect place between vigilance and faith.

Friday night, Gus and I braved the snow to get a bite to eat in Williamsburg.  On our way home, we were stopped in the middle of a conversation by a familiar song on the radio.  I referenced Counting Crow's "A Long December" in a blog post I wrote roughly two years ago.  It's been longer than that since I've heard it in its entirety, and the words that I had sung countless times and forgotten resonated with new meaning.

The smell of hospitals in winter
And the feeling that it's all a lot of oysters, but no pearls
All at once you look across a crowded room
To see the way that light attaches to a girl

I was still sobbing as we pulled into the driveway.  

We have our girl.

Monday, September 19, 2011

The Continuing Adventures of Mighty Maggie

When last we left our intrepid heroine, she had bid a fond adieu to CHKD -


well, most of the adieus were fond anyway (darn you, IV pole!) - 

and was returning home to her beloved mac-chee, er, family.

And what, you ask, has been happening since?

As if August in the Mid-Atlantic isn't crummy enough (this California girl is still floored by the humidity - even after eight years as a Virginia resident), Mother Nature decided to lay it on extra thick this year.

It's a wonder that we escaped with our lives.  That chair almost hit Pete.  Har.

Hurricane Irene proved to be a little more intense.  We lost power from Saturday night until Tuesday morning - exciting at first, but the novelty wore off with that first cold shower.  We lost a couple big trees in the woods behind our house, but overall the damage was far less than we anticipated.  Thank goodness!

Schooling at the prestigious Dining Room Table Academy began following Labor Day.  One very ambitious first grader has decided to write an autobiography.

A promising title, no?

Maggie finally had enough fuzz to warrant her first haircut since November.

And the girls are training hard for the 2014 Winter Olympics.  (All the while hoping that their petition to include sock skating will be accepted by the Olympic Committee.)

(Veronica is without socks until they can perfect this particular lift.  Kids and floor have received a number of dings.)  Their chances for gold look pretty good, although they are going to encounter some fierce competition from newcomer "Ball Bearing Belly" Pete and his rather unorthodox routine.

And things are blessedly back to normal.

Wednesday, August 3, 2011


 My little prayer today: For the fortitude and patience to learn what is being taught.

Monday, July 18, 2011

Home (Provisionally)

In a leap of faith, Dr. V~ sent us home with directions for Maggie to eat, drink and play as much as she can manage. He wants us back to the clinic first thing Wednesday morning for blood levels and a nutrition and hydration check-in. We are to call if the fever returns. Maggie tucked into her favorite alfredo, peas and tiny cupcakes. She did this after days of being treated like Cleopatra and being offered whatever Sysco or Colley Avenue had to offer. She ate very little.

Maggie's Favorite Meal (Creamy Mac-Chee)
Takes about 20 minutes
(Serves 8 with leftovers)

4 tablespoons butter (unsalted tastes better)
4 tablespoons of flour
4 cups milk, half & half or cream (Fatter = more delicious)
1 smashed clove of garlic
2+ cups of finely shredded parmesan reggiano (The cheaper stuff has fillers that will make your sauce gritty)
Salt & pepper to taste
Two lbs of fresh or dried pasta cooked al dente

Melt the butter over medium low heat. Add the smashed garlic clove. Warm the milk/half & half/cream in the microwave. When the butter is melted and hot, whisk the flour in and let foam for a minute or two. Take a slurp of mojito. When the butter and flour mixture smells toasted and awesome, whisk in the warm milk. Most recipes will suggest you whisk constantly, but those cooks are just superstitious or have only one kid. Whisk now and then. As it comes to a simmer the sauce will thicken. Add your cheese and whisk until smooth. Let simmer a few minutes to thicken. Taste and fix with salt & pepper. At this point you will have timed your pasta to just finish cooking. Drain it and add it to the sauce. Stir the sauce & pasta together and serve with a side veg. Maggie prefers corn, but will eat peas very slowly in hopes a small emergency will happen to allow her to leave the table and run outside.

Thank you for your prayers and support. This would be much more difficult without you.

My little prayer: When I take joy in creating for people I love, I get a small taste of Your joy at creating for us. Watching my child happy and sustained by my creation is my model for enjoying Your creation. Thank you, Father. 

Saturday, July 16, 2011

Not Home Yet

I am a bit superstitious about premature celebration. This comes from years of frustrating and sometimes dangerous things happening between the time someone says, "Well this has been a great sail..." and when we were safely tied to the dock. When Kate left yesterday I sent her home with a bunch of our accumulated gear, including all of my clean socks.

I mention this detail, because I am without socks and Maggie has developed another fever. No one has said, but I know what this means on the most mundane level: delayed discharge from the hospital. Her ANC is down below 500 again and so she is pretty much wide open.

One of the downsides of communicating with you as we do is that when things don't follow a typical narrative arc, we risk losing some of you to boredom with our trials. For this I am truly sorry. We are learning a great deal in this process: Prayer works. Disease is relentless and boring. Love is boundless. Suffering is redemptive. Kids can be funny and charming even when they feel terrible. Socks are important.

Hang tough. We're still here and hope you are too.

My little prayer today: Sometimes I can see the way ahead. When I cannot, I depend on You to lead us through. Sometimes even though You have done so 10,000 times before, I struggle with trust. Forgive me this. Give us encouragement to keep moving forward.

Friday, July 15, 2011

Steady As She Goes

Our girl is making steady progress, and we anticipate her return home this weekend!

She was supposed to receive her last doses of chemo (for the current phase of treatment) this past Monday, but due to low blood counts and her general poor health, they were deferred.  Dr. V. decided that she will only be receiving Vincristine and not Methotrexate.   (Methotrexate was the drug that caused the ulcerated digestive tract.)  He assured us that one missed dose would not have any negative consequences.

If Maggie does return, there is a good chance that she will be bringing her IV pole with her for a temporary stay.  Why discharge her?  While the hospital is sometimes necessary, it harbors within its walls all sorts of gnarly illnesses.  For someone with a compromised immune system, it's a dangerous place to be.  Plus, as one of her doctors pointed out, kids don't belong in hospitals. 

Maggie is more than ready to come home.  She has already planned a celebratory meal (homemade macaroni and cheese) and has asked whether we might sing her a welcome home song and make a banner for the front door.

In the meantime, she has been biding her time by keeping busy.  Books have been read,

halls have been roamed,

and toenails have been painted.

(That's Nurse Brenda painting Maggie's toenails - she wasn't even assigned to Maggie that night!  So dang awesome!)

I cannot wait to have my girlie and my husband home!

Tuesday, July 12, 2011

Tuesday's News

First of all, we are so grateful for everyone's love and support.  While we owe so much to modern medicine, we truly believe that your heartfelt intentions are moving mountains.

Our girl is improving, albeit slowly.  Her blood numbers have been low and pretty unstable.  She received platelets and red blood cells last night, in addition to intravenous immunoglobulin to try and remedy low antibodies.  Did you know that immunoglobulin is the pooled antibodies extracted from the plasma of over 1000 blood donors?  Kinda blows your mind. (Reminds me of the Communion of Saints - james)

While she continues to receive intravenous nutrition, her appetite is returning.  Initially eating was quite difficult, as her stomach and mouth were still too irritated to tolerate anything solid.  When I visited on Sunday, we watched some cartoons together.  One of the characters mentioned many of her favorite foods - each time she broke into tears over her inability to eat.  I don't know who the writers of Adventure Time are, but they know their demographic pretty darn well.

She continues to run a low-grade fever.

She and Gus take a daily turn around the unit, a walk that leaves her exhausted.

Her sunny disposition is returning, she has smiles for us and is even joking around a little bit.

Coloring with her night nurse

We're hoping that she'll be able to return home this weekend.  My mom arrived this afternoon, so I'll be freed up to spend some more time down in Norfolk.  Gus has been at her side since admission, sleeping on a window bench and leaving only to find the sketchiest places in town to eat.  He texted, "Word to the Wise:  don't keep eating the meatball to ID the ingredient that tastes off."  Sage advice, methinks.

Again, we are so touched by your continued concern for our sweet girl.  It probably goes without saying, but keep those prayers coming!

Warming up after bathtime