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.


mwestcoat said...

My smile today is big and my amazement at the strength of your little girl, deep. Maggie's might isn't just innate, it has obviously been learned from two patient, loving and amazing parents and her village of friends, family and supporters. Congratulations to all.
With love from California-

Anonymous said...

This is a beautiful post, Kate.

danette said...

I'm so happy for your family!

Maggie has been a true inspiration for so many people.

Having shared her story with my teammates we were all able to reflect on what she was going through and what we might be able to do to help.

Her precious smile has warmed many hearts and encouraged a lot of people to reach goals that they never thought they could reach.

I'm training again this year to raise money for LLS (I just can't seem to stop - It's Maggie and all of the other little one's fighting this disease that keep me going)

Seeing her take her last treatment to soooooooo exciting!! I'm just so thrilled for her and your family!

Tons of hugs to the whole family,