Wednesday, March 30, 2011

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.

Monday, March 28, 2011

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.

Thursday, March 24, 2011

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.

Saturday, March 19, 2011

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.

Saturday, March 12, 2011

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.

Wednesday, March 9, 2011

Maggie in the 03.09.11 Tidewater Review

A beautiful story...

Front Page

Story continued

Maggie's Dad does not have Photoshop

Chemo Appetite

You know your cancer patient is struggling with poor appetite when you find this:

Don't recognize it? That's because this is the smallest cup of ice cream ever sold. Ben & Jerry's sells these only to United States Marines, because no one else has the self discipline to be satisfied with such a small amount of ice cream. Tiny little girls can buy them also, but will usually cry if they don't get two. Even though it is Maggie's favorite flavor, she couldn't finish it. Add this to a parade of similarly unfinished snacks and meals and you get the picture. It is hard not to have a small Parent Freak-out.

The suppressed appetite isn't the worst, though. For the last week Maggie kept almost nothing down. Not rice, toast, crackers or even more than about 2 ounces of water at a time. This is doubly worrisome, as a poor reaction to the chemotherapy can require a slowing of the schedule or reduction of dosage. This affects prognosis. One of the reasons Lance Armstrong did so well with his cancer was his spectacular fitness. His doctors could just hammer him with powerful chemo agents in high doses. His body recovered and the cancer was destroyed.

During our clinic visit yesterday Dr. B~ explained that it probably wasn't the chemo that made Maggie so sick this week. It was probably some other illness. Life goes on, he said. Just because she has cancer doesn't mean she won't catch other illnesses. He further explained: Maggie received 250 units of Methotrexate. Kids with bone cancer get upwards of 12,000 units at a time.

12,000 units...

My little prayer today: Thank You for keeping us mindful that no matter how bad it seems to be, many others have it far worse.