And here she is imitating a snuggle bunny in her new prayer shawl set given to her by Don & Mary Alexander. She calls this set "Ramen" for obvious reasons.
Monday, January 31, 2011
Bad Tempered Camel
In case you thought living with cancer was all nausea and hand washing, here's a picture of Maggie imitating a bad tempered camel. She's studying desert habitat with her mum/teacher.
Wednesday, January 26, 2011
Checkpoint!
Maggie just finished the last of her Mercaptopurine series, the oral chemotherapy we have been carefully administering here at home. The stuff is so poisonous that Kate wasn't able to safely administer it as she's currently breast feeding. Maggie had to learn how to take a regular tablet. There were a few tears, but we learned how to get it done. It was a small mountain that Mags and I climbed together. Consolidation is over and Interim Maintenance has begun.
When I told her this was the last pill, she cried. I asked her and found she was going to miss taking the pills.
What?
After talking to her about it, the best I can figure is that each passage from one period to the next is both a triumph and signal that a new, perhaps more challenging period begins. These were tears of relief, of pride and of trepidation. That's a lot of complex emotion for a freshly minted six year old.
My prayer today: Help us to accept transitions eyes wide open and with grace. Help us to see Your will and the path You have set for us. You walk with us. You love us. We trust. Amen.
When I told her this was the last pill, she cried. I asked her and found she was going to miss taking the pills.
What?
After talking to her about it, the best I can figure is that each passage from one period to the next is both a triumph and signal that a new, perhaps more challenging period begins. These were tears of relief, of pride and of trepidation. That's a lot of complex emotion for a freshly minted six year old.
My prayer today: Help us to accept transitions eyes wide open and with grace. Help us to see Your will and the path You have set for us. You walk with us. You love us. We trust. Amen.
Thursday, January 20, 2011
Teaching Us How to Love
The phone rings and it's MaryAnn. She goes to our church and lives alone in our neighborhood. She and Kate talk for a few minutes. I hear snips of the conversation: "...fine... cheerful... Florida...". They hang up and I ask how she's doing. "Great. She's checking in before leaving for Florida to see Mike & Tina. They are taking her to a Miami Heat game."
When Mike and Tina are in town (they are snowbirds) we see them every week both in and outside of church. They recently sent us a Hogwarts Care Package from the amusement park in Orlando. Mike texts me the weather in Florida and I text him a picture of their home here in town. We both pray for their son-in-law who is battling metastatic cancer.
Last week it was Kathy calling. She wanted to say just that it was great to see Kate at Mass. With Maggie's immune system compromised, it took us a bit of time to work up the bravery necessary to take her to a church full of people. I told Maggie just to flash peace fingers at the Sign of Peace. I told her no hugging. She was delighted to find that almost no one felt the No Hugging Rule was important and hugged her anyway. Lots of hugging that morning. Kathy called to recognize how nice it was to see us all together. This is the same Kathy who never forgets to send a card at our anniversary or any of the kids' birthdays. Every year, God bless her.
These folks are all in their seventies. They cheerfully, prayerfully keep us close to them. They teach us how to love with small, consistent contacts. They don't put it off for a big glut of conversation at some yearly event. They don't wait to need us or for us to need them. They look at time differently. They don't let us go too long without them. I'm pretty sure they do the same with God.
Last week it was Kathy calling. She wanted to say just that it was great to see Kate at Mass. With Maggie's immune system compromised, it took us a bit of time to work up the bravery necessary to take her to a church full of people. I told Maggie just to flash peace fingers at the Sign of Peace. I told her no hugging. She was delighted to find that almost no one felt the No Hugging Rule was important and hugged her anyway. Lots of hugging that morning. Kathy called to recognize how nice it was to see us all together. This is the same Kathy who never forgets to send a card at our anniversary or any of the kids' birthdays. Every year, God bless her.
These folks are all in their seventies. They cheerfully, prayerfully keep us close to them. They teach us how to love with small, consistent contacts. They don't put it off for a big glut of conversation at some yearly event. They don't wait to need us or for us to need them. They look at time differently. They don't let us go too long without them. I'm pretty sure they do the same with God.
Wednesday, January 19, 2011
Thursday, January 13, 2011
A stranger no more
Maggie and I made a stop at Trader Joe's on the way home from the clinic Wednesday. I have taken to asking her if she wants to wear a procedure mask when we go places. There will come a time when I don't ask, but her ANC is solid this week.
She wore a pediatric mask as we shopped, garnering smiles of support and looks of fear and a reasonable amount of healthy indifference. As I loaded the trunk and went to buckle The Magster in, a woman nearby said, "Excuse me. What is your daughter's name?"
"Maggie, " I replied. The woman was about my age. She had been loading her own car.
"What is her condition?" she continued.
"Leukemia."
Then she said a simple and amazing thing: "Our church will be praying for her."
That's it. A stranger decided to cross the gulf that separates us all and assert her faith into our lives. She didn't prequalify us by asking us about our faith. She took a chance that I'd recoil from her in disbelief or disdain or distrust. But she approached confidently and not alone. Her faith community was with her. Her God was with her. She did not ask my permission, but wanted me to know they would raise us up in prayer.
I thanked her for her prayers. I told her how much they meant to us.
Jesus bless those who pray for us today. Their prayers add new depth to our hardship and joy. And open our eyes to others who suffer so that we may pray for them, too. And maybe they for us. Amen.
She wore a pediatric mask as we shopped, garnering smiles of support and looks of fear and a reasonable amount of healthy indifference. As I loaded the trunk and went to buckle The Magster in, a woman nearby said, "Excuse me. What is your daughter's name?"
"Maggie, " I replied. The woman was about my age. She had been loading her own car.
"What is her condition?" she continued.
"Leukemia."
Then she said a simple and amazing thing: "Our church will be praying for her."
That's it. A stranger decided to cross the gulf that separates us all and assert her faith into our lives. She didn't prequalify us by asking us about our faith. She took a chance that I'd recoil from her in disbelief or disdain or distrust. But she approached confidently and not alone. Her faith community was with her. Her God was with her. She did not ask my permission, but wanted me to know they would raise us up in prayer.
I thanked her for her prayers. I told her how much they meant to us.
Jesus bless those who pray for us today. Their prayers add new depth to our hardship and joy. And open our eyes to others who suffer so that we may pray for them, too. And maybe they for us. Amen.
Saturday, January 8, 2011
Birthday Wishes
In the beginning, Veronica wasn't too sure about Maggie. As much as we touted the benefits of having a sister (a lifelong best friend, a dress-up buddy, someone with whom to play dolls, a pink-loving pal), when Maggie arrived she was not quite interactive enough for Veronica's taste - in our enthusiasm, we apparently forgot to mention that it would be a little while before Maggie was ready for make-believe. To make matters worse, not only had Maggie usurped her position as our family's baby, she also had the nerve to be born on Veronica's birthday!
(The girls were both born on New Year's Day, four years and one minute apart. Veronica was born 01/01/01 at 12:04 a.m., and Maggie 01/01/05 at 12:05 a.m.)
Fortunately, it didn't take too long for Veronica to warm to her new sibling. A couple of weeks after Maggie's birth, my mom came to visit. As soon as she walked through the door, Veronica dragged her to where Maggie was snoozing in her bouncy seat and proudly announced, "We call it (dramatic pause) Maggie!"
Even before Maggie could walk, Veronica found in her the playmate we had promised. She was quickly indoctrinated in all things feminine.
Sometimes against her will.
While they have the occasional spat, saccharine as it sounds, they really are best friends. They like to think of themselves as twins.
This past Saturday, we celebrated Veronica's tenth birthday and Maggie's sixth at their grandparents' house. On the drive home, Veronica asked with some urgency, "Is it true that your birthday wish won't come true if you tell it to someone else? Because Maggie and I told each other."
She is a child with a wild and vast imagination. In the past, her Christmas and birthday lists have included such things as a pink wig, an ice skating outfit (she doesn't skate), and a functional quidditch broomstick. Delightedly anticipating her latest whim, we asked about her heart's desire.
"I wished for Maggie's leukemia to be cured."
Sweet, beautiful girl.
"And I wished for ice cream cake," disclosed Maggie.
Tuesday, January 4, 2011
An Early Birthday Surprise!
So our clinic trip this past Wednesday seemed pretty routine (at this point in Maggie's treatment, each visit includes a blood draw, a spinal tap, and intravenous and intrathecal [into her spinal column] chemo). Routine, that is, until we noticed a big hullaballoo coming from the nurses' station. Clapping and singing, all of the on call nurses and doctors trooped into our bay to wish Mags a happy sixth birthday! She was presented with a lovingly signed tee and a Tinkerbell balloon. She was completely surprised and thrilled, as were we. How awesome is that?!
A Long December
I woke up this morning with a song in my head. Well, not a whole song, just a couple of lines from "A Long December" by the Counting Crows:
It's been a long December and there's reason to believe
Maybe this year will be better than the last
2010, as a whole, wasn't terrible, but December seemed especially long and intense. It probably didn't help that our darkest days coincided with those offering the fewest hours of daylight. We have persevered thus far, but we haven't done it alone.
There have been times when Gus and I have grumbled about small town life - how cool would it be to live in a bustling city? Imagine, we could live in a quirky apartment within walking distance of eclectic bookstores, natural history museums, Japanese restaurants! Think about how the kids' lives would be enriched by the interplay of cultures, the opportunities, the experiences!
Yet, this small town has embraced and carried us in a way that no big city would ever be able to do. We are grateful and humbled by the appearance of Maggie's name on prayer lists all over town, by the countless carolers who shivered in our front yard, by the cards and video that arrived from the elementary school (and we homeschool!), by a visit from Santa and his elves, by the hot and delicious meals that are waiting for us when we return home, exhausted, at the end of clinic days. Everyone wants to be updated on Maggie's progress; I've realized that I have to factor in an extra half hour to my Food Lion trips because I will undoubtedly have at least three wonderfully lengthy conversations. We are so overwhelmed by this small town's big love.
This is not to say that we think any less of all of the love that is coming at us from outside our town's limits. Grandparents, aunts, uncles, cousins, colleagues, teachers, friends from grade school, friends from college, family friends, friends of friends - our mailboxes (both snail and electronic) are overflowing with prayers, support, encouragement, and offers of help.
Okay, so I'm going to get a little Dorothy Gale here but, "if I ever go looking for my heart's desire again, I won't look any further than my own back yard". I can't think of a more enriching experience for our children than that of seeing an entire community rally around one small person. Would they otherwise have had an opportunity to see such an outpouring of generosity and compassion? We are truly blessed. In a book that I'm reading, one character says something to the effect of: my heart is so full that my eyes are overflowing. Wow. Totally. Spot on.
And, thanks to Santa, anytime we want Japanese food, we can just ask our in-house sushi chef!
I think this year will be better than the last.
It's been a long December and there's reason to believe
Maybe this year will be better than the last
2010, as a whole, wasn't terrible, but December seemed especially long and intense. It probably didn't help that our darkest days coincided with those offering the fewest hours of daylight. We have persevered thus far, but we haven't done it alone.
There have been times when Gus and I have grumbled about small town life - how cool would it be to live in a bustling city? Imagine, we could live in a quirky apartment within walking distance of eclectic bookstores, natural history museums, Japanese restaurants! Think about how the kids' lives would be enriched by the interplay of cultures, the opportunities, the experiences!
Yet, this small town has embraced and carried us in a way that no big city would ever be able to do. We are grateful and humbled by the appearance of Maggie's name on prayer lists all over town, by the countless carolers who shivered in our front yard, by the cards and video that arrived from the elementary school (and we homeschool!), by a visit from Santa and his elves, by the hot and delicious meals that are waiting for us when we return home, exhausted, at the end of clinic days. Everyone wants to be updated on Maggie's progress; I've realized that I have to factor in an extra half hour to my Food Lion trips because I will undoubtedly have at least three wonderfully lengthy conversations. We are so overwhelmed by this small town's big love.
This is not to say that we think any less of all of the love that is coming at us from outside our town's limits. Grandparents, aunts, uncles, cousins, colleagues, teachers, friends from grade school, friends from college, family friends, friends of friends - our mailboxes (both snail and electronic) are overflowing with prayers, support, encouragement, and offers of help.
Okay, so I'm going to get a little Dorothy Gale here but, "if I ever go looking for my heart's desire again, I won't look any further than my own back yard". I can't think of a more enriching experience for our children than that of seeing an entire community rally around one small person. Would they otherwise have had an opportunity to see such an outpouring of generosity and compassion? We are truly blessed. In a book that I'm reading, one character says something to the effect of: my heart is so full that my eyes are overflowing. Wow. Totally. Spot on.
And, thanks to Santa, anytime we want Japanese food, we can just ask our in-house sushi chef!
I think this year will be better than the last.
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