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.

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.

Perspective

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

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. 

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.

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'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

Unanticipated

On clinic days, we trade stories with the other hematology/oncology parents while our children play board games and visit the pet therapy dogs.  We've had a few scares, but for the most part, our experiences concerning Maggie's treatment have been relatively mundane.  A family with whom we've become friendly told us about their son's six-week hospitalization following an allergic reaction to a chemotherapy drug. A teenage girl of our acquaintance wears casts on both legs because the steroids she has taken as part of her treatment have caused the small blood vessels that nourish her bones and joints to die.  Understandably, we have felt very blessed and relieved that Maggie is doing so well despite the continued toxic assault on her body.


If, a couple of weeks ago, you had met me in the aisles of Food Lion and asked how Maggie was faring, I would have smiled broadly and told you that she is in the final phase of treatment before maintenance - the monthly doses of chemotherapy that will ensure her remission during the remaining (roughly) two years of treatment.  Currently, we are visiting clinic every ten days, ramping up the chemo each time - as her body allows.  Thank you so much for asking after her, and please keep her in your prayers.


Her latest appointment fell on 30 June.  She was NPO (nothing per oral) after midnight, as she was having a spinal tap and intrathecal chemotherapy in addition to intravenous chemotherapy.  She and Gus left a little after 7 A.M. and the text trading began.


G:  Ativan hit her hard.  Wow.
(She's been prescribed Ativan to help with her anxiety about procedures.)
K:  Hit her hard?  Her weight might be down enough?
G:  Just hammered.  Doc will see her before labs are back to be sure she's fine.
K:  Tired?  Loopy?
G:  Anticipatory emesis.
K:  Crap.  Poor baby.


Emesis is the medical term for throwing up.  Gus and I first read about anticipatory emesis in a book called Complications: A Surgeon's Notes on an Imperfect Science by Atul Gawande.  About a quarter of chemotherapy patents begin to have anticipatory nausea and vomiting that occur before any drugs are injected.  Some patients have even been known to vomit when they see the highway exit signs for their hospitals.  Maggie had thrown up prior to treatment at the previous appointment, so we assumed that we were seeing a trend.


As the day progressed, Gus continued to text about Maggie's well-being.  At 9:30, she had chills.  At 10:38 she threw up again.  At 1:50 she was still sick and her blood pressure was 80/42.  She received a IV bolus of fluid for dehydration at 2:13, and and another at 3:15.  Her ANC was borderline at 542, but she received her IV chemo anyway (500 is the cutoff).  We postulated that she had tired herself out the previous evening at a friend's pool party.  Perhaps she processed the Ativan differently without food in her belly.


As it turns out, we were seeing a really aggressive virus take hold.


Maggie couldn't eat dinner that night, nor any food for the next three days.  We forced fluids, only to have her vomit them back up.  Her temperature slowly crept up into triple digits.  On Sunday, the on-call doctor requested that we take her to the CHKD ER.  She received anti-nausea meds, fluids, and antibiotics.  Then she was sent home.


We were frustrated and scared the next morning when she appeared much as she had before.  Still feverish.  Still vomiting.  She couldn't walk from the sofa to the bathroom without stopping to rest.  Tuesday was much the same.  Wednesday morning, we called clinic and they wanted to see her.


She continued to throw up at clinic, and now it was blood tinged.  They determined that in the space of a week, she lost seven percent of her body weight.  Her ANC had dropped to 263, and her temperature risen to 102.  Without the ability to resist infection, she had also contracted thrush, a fungal infection of the mucous membrane linings of the mouth and tongue.  She was admitted.

After a couple of days in the hospital, she's rallying, but not quickly.  The virus has run its course and the thrush has been treated.  However, as a result of the accumulated chemotherapy of this phase of treatment, she is suffering from mucositis, painful inflammation and ulceration of the mucous membranes lining the digestive tract.  She is so uncomfortable that she has stopped talking and refuses to swallow her saliva, choosing instead to spit it out.  Morphine was started yesterday afternoon, and seems to be helping.
And in the evening, having not eaten for nine days, she began receiving IV nutrition.

A crowded pole

Please keep Maggie in your prayers.

In other news...

It isn't easy being three. His shoe to foot matching is not random as he gets it wrong close to 100% of trials. The mismatched shoes are a matter of hurrying to get outside.

2011 Relay for Life

Maggie and her brother Chance took part in the Relay for Life in King William County. It was surprising to find the number of people we knew who had been both touched by cancer and who were determined to do something about it. Maggie did the survivor's lap, the caretakers lap and then had some cake. What a beautiful and well organized event.

New friend Katherine. Lovely.

We know nine of the folks in this shot

"It's not a dress, Veronica. It's a SHIRT!"

Chance, Coltrane & Pete

The Communion of Saints was there

Bad Traffic

Freeway is closed following an accident. We are crawling in traffic on the way to the chemo clinic. Maggie took this. She said it reminded her of Jesus.

Delays, delays... Nothing but delays.

Maggie's Absolute Neutrophil Count (ANC) is too low to begin the next phase of chemotherapy. A few months ago we would be really worried. Today, not so much. Today we are all about joyful hope. Back in the game next week.

My small prayer today: You have delivered us from needless anxiety. Thank you for answering our prayers.

Pinky and the Angry Birds

What I meant to say...

So as Dr. V~ finished our weekly exam with a description of the next phase, I failed to notice what had happened. My response was a crisp, "Great. Good stuff."

What I didn't notice was that he had just said that Maggie had emerged from the most grueling period of chemo, Delayed Intensification it is called, with solid blood numbers, healthy and cheerful. She had come out on the other side of a period we had long dreaded and doing better than we could have reasonably asked.

I blew right past the moment as I did what I have become used to: steeling myself for the next onslaught, the next week of careful home medication regimen, management of messy side effects, meticulous hygiene, attentiveness to subtle changes, breath-holding care.

I was out into the nearly empty chemo clinic waiting for our paperwork when I realized what had happened. I had missed the moment to be grateful, because I was preparing to deal with the next trial.

Here's what I meant to say to Dr. V~:

Thank you for all the work. Thanks for being careful and smart. Thanks for working with Maggie and with us. More than that though, thank you for the sacrifice over the last 20+ years: for all the times you were studying or in lab when you wanted to be goofing off with your friends. Thanks for missing dinners with your family and working weekends and holidays, sometimes with people you never could like, but worked effectively with anyway. Thanks for finding the inspiration and motivation to keep honing your skills and mind.

We appreciate the Ramen Years, in whatever form you experienced them. We are grateful for your continuing work with sick kids despite layers of management and governance that must sometimes seem to stand in conflict with your oath and the application of your ethics and science.

Thanks for sweating med school. Thanks for sweating graduation. Thanks for sweating residency. Thanks for sweating your boards.

Thanks for working really hard for a very long time and laughing at our tense jokes. Thanks for gentle honesty with the hard facts, for letting us ask the same question several times and being gracious enough to give the same answer in different ways so we didn't think you were annoyed. Thanks for emerging from your own trials better for the struggle and with energy for the kids.

Thanks for calling Maggie a Superstar and accepting her hugs, because she still needs to feel like a superstar who can give as well as receive love. Thanks for all the help getting us here.

[Mildly Awkward Man Hug]

In all honesty, I doubt Dr. V~ would have held still for this appreciation party. He would have waved off our gratitude with a smile and turned it back on us. He would have mentioned the team.

This is where we are: Next week we begin Interim Maintenance II. Every ten days we'll be back to the clinic for IV chemo and a lumbar puncture. After 57 days of that we move into the next phase. Piece of cake, right?

Our little prayer this week: We see how others honor their gifts by applying them to improving the world every day. When we are aware of this, we better see what you mean by made in your image. Thank you.

Someone you should meet: Colleen Christl, RN

This is Colleen, Maggie's primary nurse. Children's Hospital of the King's Daughters assigns each leukemia patient a specific nurse who gives direct care, provides some case management and serves as main contact person for the family. She does a thousand different things for Maggie, answers many of our questions and really makes us feel like we are her only treatment family. The assignment board behind the nursing station tells a clearly different tale.

When Maggie was once distracted by Colleen's cool slap watch, Colleen gave it to her to play with for a while. (Nurses need their watches... watches and black clicky pens.) The next time we came in, she was wearing a pink version of the watch, because pink is Maggie's favorite color.

Colleen takes Maggie's tears and fear in stride, always supportive and patient. All day long she carefully administers dangerous medications to sick, scared kids. She assists with painful, frightening procedures. She does this with kindness, patience and accuracy despite dozens of different protocols, personalities and daily variables. This is serious, technical nursing. Some of these kids will get sicker, despite Colleen and her colleagues' best efforts. Even so, Colleen exercises a confident optimism that helps make a constellation of terrible experiences tolerable.

Today's prayer I leave to you. May I suggest you include Colleen and her upcoming marriage? If you like, cast a wider net and pray for all Oncology Nurses. I know a few. Salt of the earth.

Life Goes On

Despite the extra chemo, despite the steroid blues, life goes on. Witness this treasure of a moment to which any kid or parent can relate:

Maggie lost her first tooth. Do you remember how scary and awesome this was for you?

Our little prayer today: Your presence in our lives helps us to appreciate the scary, awesome day to day. Count us among your grateful ones.

The Upshot

Thank you all for your thoughts and prayers!

Because Maggie has developed this intense allergy to the PEG-L-asparaginase, she needs to do an alternative treatment that requires two intra-muscular (IM) shots during each of six additional hospital visits over the next two weeks. We may be able to combine two of these additional runs to Norfolk with her regular chemotherapy visits.

About ten percent of kids treated with PEG-L-asparaginase develop an allergy to it. Dr. V reminded me today that if she had gotten her dose in one IM push like they used to do it, she'd likely still be in the hospital chasing the reaction.

Did I mention that Maggie has an intense aversion to needles? Any good ideas on how to help her deal with her fear?

Our little prayer today: Help us to be mindful that every path, even the unexpected one, is Your path.

Maggie getting her Vincristine.

A Temporary Setback

While our current chemo schedule dictates a trip to clinic every Wednesday, today (Monday) Gus/James and his dad took Maggie down to clinic for a two-hour infusion of L-Asparaginase.  (Nothing extra, a one-time part of protocol.)  L-Asparaginase is an enzyme that blocks protein production in cancer cells to keep them from reproducing.  She received the same when she was hospitalized following her diagnosis.

When either Gus or I is not able to make it to clinic, we keep in touch by texting.  I followed the progress of the appointment from home:  the arrival at CHKD, the meeting with the doctor, lab results, etc.  When the phone rang, and Gus' number displayed on caller ID, I figured that he was just checking in on things here.

Maggie had had an anaphylactic allergic reaction to the L-Asparaginase.  Gus said that soon after the IV had started, she clutched at her throat (because she couldn't breathe), turned red, and broke out in hives.  Gus hustled to the nurses' station for help, the IV was stopped, and Benadryl was administered.  She's currently sleeping and her nurse is checking her vitals every ten minutes.

Apparently, it's not unheard of for kids to develop allergies to medications that they've tolerated before.  Once Maggie was resting comfortably, Gus was talking to one of the other clinic families that we've come to know.  Their son received L-Asparaginase via injection, so when he had a reaction, there was no way to "turn it off."  He was hospitalized for two weeks.  Then they told of another child who, following an injection reaction, was inpatient for sixty days!  Wow.  I don't know why Maggie was getting an IV versus an injection - perhaps a change in protocol for this very reason?  Thank God. 

So how does this affect Maggie's treatment plan?  We're not sure.  Gus is still waiting to speak to the doctor.  We'll update as soon as we know Plan B.

Keep our girl in your prayers.

Back on the Couch

Poor Maggie is dragging today after a hard restart of weekly chemo and beginning a seven day burst of steroids. She's very nauseous. She has eaten a single Ritz cracker in the last 30 hours, only what was necessary to take oral medication. Our anticipation of this does not make it easier to see her so low.

Our prayer today: All shall be well and all shall be well and all manner of things shall be well. (Right?)

Thank God, but Yuck.

The Amazing Danette! **UPDATE**

 

This is Danette.  Although she lives in my hometown and works at my former elementary school, we have never met.  Nonetheless, we consider her a dear friend.

In 2006, her husband trained for and participated in a triathlon. In the process, Danette's family met a family with a child who was undergoing treatment for ALL.  After getting to know Lauren (who is now a happy and healthy fifth grader! Yea!) and her family, Danette felt like she needed to do something to help children who are affected by cancer.  Soon thereafter, Danette began her involvement with The Leukemia and Lymphoma Society as a member of their Team in Training.  She had participated in five triathlons, and was considering retiring, when she heard, via my mom, about our Maggie.  She has signed on for triathlon NUMBER SIX.

She writes, "Mighty Maggie is the little girl who gets me through my crazy 2500 yard swims, my miles upon miles bike rides and the long walks that I do to train for my triathlon."  Wowza.  (On a related note, inspired by Danette, Gus and I have dusted off our running shoes and have been going on daily walks.  We're certainly not triathlon material yet, but you know what they say about a journey of one thousand miles...)

As of this posting, she is 74% of the way to her fund raising goal.  The donations she has collected will:

• fund more than 200 researchers
• provide financial assistance to patients
• sponsor scientific conferences
• produce educational materials and videos
• run over 50 support groups nationwide

Take a minute and check out her fund raising page to learn more about this lovely (and very fit) lady!  Go Team Danette!

**UPDATE**: The CHKD Hematology/Oncology Unit has a tradition that ties into Danette's effort. When a patient finishes her chemotherapy she is awarded a big, beautiful medal like the one Danette is sporting in the picture. The clinic gets these medals from marathon runners who have donated them. I have seen this ceremony twice, both times for teens who beat their cancer. There are always tears and the kids clearly treasure the medals. There is a connection made between the runner and the child. The similarity of the two efforts is lost on no one. It is a great tradition. -James


My little prayer: In the gray of the middle, between the newness of the start and the excitement of the finish, help us to see You in every step.

We are praying...

We are praying for the people of the Pacific Rim who have suffered and will continue to suffer incalculable loss and painful deprivation. I cannot imagine the fear and anxiety they are suffering.

I can imagine how wrecked we would be without stable access to Maggie's treatment team. This is the only way I can gather in a tiny bit of the magnitude of loss happening in Japan. Power outages don't just mean reading by candlelight and a night without TV. They mean no power for respirators or radiology equipment, refrigeration of medication and blood for transfusion. Limited fresh water.. Dwindling food access.. Ruined transportation and communication.

God have mercy on us and on the whole world. We are all one or we are nothing at all.