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.