Tuesday, December 7, 2010

To Share

Shared joy is double joy, shared sorrow is half sorrow.  ~Swedish proverb

Yesterday morning, Gus wrote an email to our families updating them on Maggie's treatment.  While the email was quite comprehensive, we found that our list of recipients was not.  Throughout the day, we thought of more people who would probably like to receive the same information.  So, instead of creating the longest contact list in the world, we thought it better to start this blog.  Please come and get the latest news and feel free to ask questions or leave a comment.

Gus' original update:

Dear family & friends,

Executive Summary:
Maggie is acclimating as well as can be expected to a myriad of medications and procedures used by her awesome CHKD oncology team to treat her leukemia. As a family, we feel blessed. We are especially thankful for all of your prayers and help.

The full version:
Yesterday we went to Maggie's weekly chemo appointment in Norfolk. This is her second outpatient trip and it was day 15 of treatment. That daily method of keeping track of where she is in her treatment facilitates specific medication schedules. (Some of the chemo meds are given just once or once a week or days 4 and 8, for example.)

These visits go something like this: Before we leave the house at around 7:30 we give Maggie her morning meds and apply a pile of lidocane cream to the port site and cover it with a plastic dressing. Like as not, she has not been able to eat or drink from the previous evening. We drive the 65 miles to CHKD and check into the clinic at about nine. Maggie gets vitals done and they access her portacath. Maggie is pretty emotional at this point, as she has been dreading these procedures. Once the port is accessed and morning labs drawn, she seems to relax. This anxiety and the tears involved are largely side effects of the strong daily steroids she's taking. Some kids get really irritable. Maggie gets insecure and emotional. Another side effect she is currently feeling is joint pain, specifically in her lower back. It's pretty bad.

After the morning labs come back, the team makes a decision about how to treat that day. Last Friday her sodium level was low. This necessitated another run to Norfolk on Monday for an additional lab draw.

Yesterday she got something new. Because of a low hemoglobin count, she got a blood transfusion. The nurses listened when I suggested that hanging a bag of blood on Maggie's IV pole was likely to weird her out. The pole came out shrouded with a sheet onto which they had drawn a wacky face with a sharpie. They referred to it as red medicine at first. As you know, it came from one of you, albeit indirectly. What a gift, no?

A lot of the medication is designed to ameliorate the effects of the chemo. Joint pain gets acetaminophen with codeine. Suppressed immune system is supported with strong prophylactic antibiotics. She's taking a mild laxative. She's taking a break on an antifungal mouth rinse (for thrush).

Other side effects: she's hungry all the time. She has vivid ideas about what she wants to eat next. This can be charming, e.g. "Can we have stew over egg noodles that have been buttered?"

She's also really tired and flat of affect. Her hemo-oncologist, Anthony Villella called this steroid blues. It looks like deep depression. Yesterday we spoke of prognosis for the first time. The type of leukemia Maggie has, B-type Acute Lymphocytic Leukemia, is both the most common and the most treatable. There are a number of factors which affect prognosis within this type of cancer. In her favor are her age (neither very young, nor older than 10) and her relatively low lymphocyte load at diagnosis. Against her are the type of mutated lymphocytes found in her bone marrow. They are not the most challenging, but not the most curable. Also in her favor is the way she is responding to chemo. Things can go badly, no question. Infection is a real danger at any point in the process.

CHKD is an amazing place. Everyone is beyond helpful and very kind. They don't mind the tears and look out for our comfort the entire time. They give us as much information as we can absorb and are genuinely appreciative of our curiosity. They take our calls cheerfully and are really focused on Maggie.

The first 28 days, called induction, is an effort to hammer the mutated leukocytes and put Maggie's cancer into remission. The next period is called consolidation, designed to target specific aspects of the specific abnormal cells. Those two periods comprise 8 weeks of the 28
months the entire treatment, barring relapse, is projected to take. This is a marathon. Always wanted (in the abstract) to run one of these. Didn't expect to be carrying this much or for the stakes to be so high.

We appreciate every prayer, every bit of help and offer of help, every positive thought, gift and card. We are impressed by your collective capacity to love suffering kids. We are thankful for the moment, for you all, for Advent, for each day, the blessed and the disappointingly rasty. There are times when we feel like the most blessed family in Creation and days we feel bleakly behind in every little thing. We suspect many of you feel the same. We pray for you all every day. We are committed to seeing God's hand in every step of this path. Sometimes we are going to need your help to illuminate the way.

Thank you, thank you, bless you!

-James & Kate


Me said...

A blog is a brilliant way to keep every one up to date. Smart parents. Brave little girl. I love you all.

Frances said...

Thanks for taking the time to keep us all in the loop! It's so important for everyone to know what's happening without calling or e-mailing.

Don said...

Thanks for creating the blog but thanks even more the unwaivering courage you and Gus have shown. You guys are living saints in my book.

Michael said...

Thanks for beings so open with us all. We miss & love you all. Hugs for everyone, especially Maggie.
Yours in Christ
Mike & Tina

Armando said...

Things just happen, but God shows us the wonder of His hand by entering our lives and making his power known to us. Show us that wonder, Lord, touch and hear her.

Armando, Tracy, Cassie and Gabi de Leon

Kimberly said...

Just found this blog. Thanks for keeping us a part of your family. We love you guys! God bless you all!