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

Saturday, July 9, 2011


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.