May is Brain Cancer Awareness Month

In the past, I have already begun begging people for charitable donations by this time of year.  I decided to take a break from it this year, with the exception of today's one little blitz.

Last weekend, we attended the annual fundraising event for Duke's Brain Tumor Center.  They do a fabulous job at this institution, and it was our fourth year in attendance.  So these sweet pictures are from that event (and were taken by my friend, Kellie).

Charlotte insisted on giving a kiss to her brain tumor buddy, Layla.

This coming weekend, we will be attending for the second time a fundraiser in the form of a motorcycle ride to benefit the Pediatric Brain Tumor Foundation. Funding the Pediatric Brain Tumor Foundation (PBTF) is so important to me because while the NCI currently gives a mere 4% of their budget to pediatric research, the PBTF supports research that is both pediatric and brain tumor specific.

Charlotte has been living with brain cancer for four years now - the entirety of her life.  It is difficult to explain her situation when the question, "How is she doing?" arises.  She is doing GREAT in day to day life.  She is full of joy and is as silly as can be.  Charlotte giggles all. day. long.  She has a very high quality of life.  She is greatly loved.  But regarding the long-term issue of her cancer, Charlotte currently has progressive disease; the cancer has metastasized and spread since we had to stop chemo last September.  However, our hands are tied when it comes to treatment options.  Because the primary tumor is on her brainstem, it will never be able to be removed.  She has already completed courses of three chemo drugs and has been rejected from being eligible for another three.  There are very few drugs left to try.  None of them will be a "cure." At best, future therapies might buy her some more time, while hopefully maintaining a reasonably high quality of life.

Won't you please consider giving generously so that we can translate research into better therapies for our kids?  We need more options and fewer toxicities.

Click here to donate today.  And a huge THANK YOU for doing so.

Charlotte's Birthday Quilt

This is the quilt that I made for Charlotte's birthday.  Only, poor dear, when Charlotte unwrapped the quilt, it still had the clover clips attached and the binding only half done!  Oh, I'm terrible with deadlines...

(And nevermind the outdated pictures.  Spring is in full, glorious swing here in North Carolina. I meant to post these pictures right away when I took them in late February, but life gets in the way, you know?)

Anyhow, this quilt got started back in September when I spotted the Heather Ross "Itsy Bitsy Spider" fabric for the first time.  I'm such a fan of Heather Ross, but am also so new to quilting that some of these older fabric lines are "news to me." And Charlotte is a fan of "Itsy Bitsy Spider" (she was singing it just this morning, in fact), so of course I just had to buy a fat quarter or two of this sweet fabric.

And then I threw in a bunch of coordinating fabrics.  See "Posy" below.  I cannot get enough of this sweetness!  (I'm making another Posy quilt now using Fielke's "Made in Cherry" pattern; it's divine, if I do say so myself.)

Back to the quilt at hand, though: more Heather Ross fabric in the form of Briar Rose strawberries.  A favorite of mine... sigh.

Anne gave me these trees as a little scrap probably two years ago now! I am proud to have made a place for it here.

Here's the backing: two different DS quilts fabrics from JoAnn's.

I love the backing.

I also love the quilting.  Logan did this for me yet again.  I love how it crinkles after it's been washed.

One thing I don't love is the gray (Kona Shale) that I used.  I should have gone with Kona Ash.  Oh well: that's one reason I love quilting - I'm always learning.

See the snowflakes on the quilt?  Oh, it was not lost on me that the morning I wake up to a six-inch snowfall, instead of wrapping my kids up in quilts to keep them warm, I toss the quilts out on top of the snow to take frivolous pictures!  The quilts came back inside wet and useless.  Ridiculous.

Here's my youngest.  At age 2, this is the most snow Marian has ever seen.  She loved it.

And I love this last picture.  Clearly, Marian has been studying and practicing her impressions of Marion Cotillard.  While my Marian might want to step up her fashion game, the glance and smile over her shoulder aren't bad, eh?

Celebrating Charlotte's Birthday

It happened a month ago now, but Charlotte turned four years old!  I can hardly believe it; it's almost too good to be true. Our family and friends alike marvel at Charlotte's life. I know that many pray for a "healing miracle" for Charlotte; truly, I marvel at the miracle that she is already.  Yes, she has a terrible cancer.  But for now, she also has breath in her lungs and joy in heart.  Darn it all if I don't love this kid to bits and pieces!

Alright, let me show you the pictures from her party.  First, I should explain that our family doesn't really "do" birthday parties.  Invite the grandparents, order a pizza and bake a little cake, and that's about all the hubbub our kids usually get. Three months ago, things got a little c-c-crazy when I bought some streamers for Elyse and Marian's joint birthday.  ;)

So you'll believe me when I say that we truly felt like a celebration was in order this year when we hosted 25 people in our home!  I suppose that six of those twenty five already occupy the home day in, day out, but still... that many people felt like a big deal to me.  We had both sets of grandparents come from Virginia, my sister, Shannon, flew in from New York City, and then local friends, too (including nurse-friends from Duke and Charlotte's oncologist with his wife).

Enough rambling. Here are some pictures.  First up, we did "Charlotte games."  Charlotte's arms have been paralyzed by her tumor, but no worries: she is quite adept with her feet.  It was important to my husband and me that the kids play games in the same manner as Charlotte.  So the first game we played was coloring with toes.

Next up: stacking blocks with feet.  We didn't get a very good picture of Charlotte doing this, but really: she is a pro!  I wish I had her abs of steel.  She doesn't even support herself with her arms (as you see Henry doing in the picture below), yet I have seen build a tower at least seven blocks high!  She amazes me.

My husband named the final game "The Rump Race."  When Charlotte is not in her wheelchair, she scoots across the floor on her bottom.  So we lined the kids up at one of the room, and they had to scoot on their bottoms all the way to the other end.  Here's Charlotte leading the pack:

After the games, we ate a little bit.  (But I will spare you pictures of us stuffing our faces.  Phew!)  Then presents.  Charlotte has such thoughtful friends and family members.  :)  My gift to her was a new quilt (imagine that), but I'm still working on taking some good pictures of it.  I'll share that quilt in a later post.  

Candles and cake!   These next two pictures are just absolutely priceless in my mind.

And Charlotte just had to keep Barney for herself...

This next picture of Marian?  I die.  If she isn't just the cutest little thing I ever did see...

I just love this picture.  These are my kids and Tracy's kids.  They are like cousins; they just love each other so much.

And here is Charlotte with "her" Dr. G. (She'll say, "When do we go to Duke and see my Dr. G?"  Isn't that so cute?  Stop being so possessive, Charlotte! He does have other patients, you know...)

One last photo: the birthday girl flying across the floor in the great little scooter her Papa bought for her.  

This was truly one of the happiest days of my life.  It was so special to me to have these particular people in our home: the ones who love Charlotte most and know all that she has been up against and has been through to get this far.  And while Charlotte has quite the spunky personality out of the house, she is even more vivacious in her own home where she is most comfortable and at ease.  So I just loved having our friends and family see that side of her, too.  I truly felt as though my heart might burst for joy all throughout the party.  It was so much fun and so very special to me.

If you're still reading this far... thanks!  :)  And a million thanks, as always, to my sweet friend, Kellie, who acted like my personal photographer and took all these great pictures.    

Last Day of Chemo

It was almost a month ago now that Charlotte had her "last" chemo. She has been receiving weekly chemotherapy for her brainstem and spinal cord tumor for two years now.  The tumor has been stable for one year, so we decided that it was time to take Charlotte off of treatment.  For her last chemo, our friends, Kellie and Grace, came along, and Kellie took all these lovely pictures for us.

 So here is a day in the life:

When the nurse assistant showed us to our room, we found the door decorated with streamers and with the poster: complete with "Frozen" and "Barney" figures!  These folks know my Charlotte so well.  I cried.

The first thing to do is to don our masks in order to access Charlotte's port.  She is so brave.  She doesn't cry, but only sings us songs as they poke her with a big needle each week (the numbing cream helps).

All done!  See that little pink pig?  She received it the previous week from the girls in the radiology department after being a rockstar during a CT scan.  I admit: I was not too thrilled to have a gold-hoofed pig join the ever-increasing stuffed animal farm we seem to run.  But Charlotte loves the darn thing so much that she even sleeps with it!  It fits so perfectly right under her little arm that it really grew on me so quickly.  In case you were wondering, we named her "Goldie."

Then it was time for a wardrobe change.

That does not usually happen during a chemo day.

Here's the story: a few months ago, the kids and I passed by a yard sale going on just down the street from our old home.  And hanging from the tree, wouldn't you know it, a little Indian dress just in Charlotte's size!  Well, Charlotte's oncologist is of Indian origin, and he loves Charlotte, so I thought he might find it fun if she showed up for chemo in this little dress.  Surprise!

Needless to say, he loved it.  But the dress (called a "pavadai") didn't quite fit her (too small) and he said that there is also all this jewelry that goes with it and he is visiting family in India this summer so why doesn't he get her one to fit and with all the accessories to boot?  Now, how could I turn that down?  I couldn't.

So Dr. and Mrs. G did a little shopping for Charlotte, half-way across the world in India!  And now doesn't she look beautiful, all dolled up?!

I admit: I think she's so funny!

Look at her pretty necklace!

Charlotte must have cracked a joke here, too.

Next, while waiting for Charlotte's labwork to process and for her chemo to be drawn up, we headed out for an ultrasound and to deliver cookies to thank all our friends.  Above is our Child Life Specialist, Katie.  She's just the best.  And below is one of the pharmacists.  (One time, they invited us in to the pharmacy for a tour.  I got all gowned up and they took me back to where they make the chemo.  You just would not believe all that goes into that!  They follow about a hundred different safety precautions.  It's amazing.  We are so grateful that they are so careful.)

The lady in the above picture works in the lab and is a fellow quilter!  I always peek in to see if she's there; we swap quilt pictures and stories when we run into each other.  Fun!

Marian starts to look a little rough when it's well past her naptime.  But this is the yard sale pavadai that she's wearing!  See!  Isn't it just gorgeous?!  I tell ya: that $4 purchase has yielded the best return I've ever seen.  

Then it's time for the actual chemo infusion.  It only took a minute to push the drug into her port.  

And more party!  Here the nurses came in singing, "Happy Last Chemo to you" to the tune of "Happy Birthday."  It was so sweet.  And they gave Charlotte this doll (which Marian claimed as her own once home, but Charlotte has been too preoccupied with Goldie to mind).

Here we are with (most but not all of) our favorite nurses. It is so hard to put into words how much we love her nurses and doctor.  Do I like that Charlotte has cancer?  Not at all.  But am I so grateful that we have the privilege of knowing these wonderful people?  Absolutely.  This might be what Ann Voskamp calls "the ugly beautiful" of life.  We must try to see beauty in all things.  Even in cancer.

And Elyse and Henry were invited to choose a toy, too, because it's as they say: cancer affects the whole family.

We think she looks like such a princess here.

Charlotte loves Dr. G so much.

Raising funds for research is so important to me because while we called this "Charlotte's last chemo" it is most likely her "last" just for now.  She still has her tumor, and this type of tumor will typically progress.  So we will keep scanning her periodically and will put her back on therapy if/when her tumor progresses.  And that's why I want to help raise funds and support research initiatives that are pediatric specific.  The chemotherapy that Charlotte was most recently on might not work the next time her tumor grows.  There will most likely always be a need for more money because there will most likely always be a need for more therapies because of the nature of these tumors; namely: they keep changing.

So thank you for all of your support: in prayers, words of encouragement, quilt donations, and cold hard cash for those quilts.  :)  Charlotte is nearly four-years old and a delight to us.  We are constantly in awe of the grace of her growth and of her life and are thankful to God for these good gifts.