Beads of Courage Update

Hello! This is Chrissie, Emily’s Mommy, writing here for the first time. Now that Emily is in the Maintenance Phase, I finally feel able to breath, and I hope to write a post here and there to keep everyone updated on how Emily -and the rest of our family -is doing. I won’t write a lot today, but I want to share a brief update on Emily’s Beads of Courage.

As my sister, Elisabeth, explained earlier this year, the Beads of Courage program is a beautiful way to keep track of Emily’s journey through leukemia. She is blessedly young enough to not remember most of what she is enduring, so I especially appreciate the beads for the story they will one day tell her.

Emily has collected nearly 500 beads this year, all signifying an important part of her journey. Some of the beads were gifts from beautiful friends (the dragonfly and cat), some were given as Beads of Courage from brave people who carried them in their own races (the blue/green glass bead) or from organizations that recognize Emily’s bravery (the duck bead), and most of the others describe parts of her treatment and obstacles she’s overcome.

At this point, her beads are incomplete, but I hope to get the missing ones soon, and I will post a new picture. She is missing all the purple beads that go along with the two sections of green and yellow toward the end (purple is for antibiotic infusions), and I don’t yet have any beads for her last hospital stay, so you can just imagine another 30 or so beads at the very end 🙂

Beads through October 2012

Beads through October 2012

The white beads denote chemotherapy treatments, red is for blood and platelet transfusions (34), beige for bone marrow biopsies/aspirations (3), tortoise/orange is for spinal taps (13 so far), blue are clinc and infusion room visits, yellow signify overnight stays in the hospital (ten this year), green is for fever and neutropenia, purple for antibiotics, and the little grey ones show how often her Broviac dressing is changed (too many times). You’ll also notice some larger, more colorful beads. Two of them represent her allergic reactions to the Aspariginaise chemo this summer,  the really big one in the middle represents the day she began walking again, and the smaller green one next to it shows that she spent her birthday in the hospital. The face bead is an obvious one -it signifies when she began losing her hair.

Speaking of hair, Emily’s is growing back!! We love her bald, but we cannot wait to see her hair again! It’s coming back in light blonde, but will it still be curly?? Can’t wait to see!

Fuzzy picture, fuzzy hair!

Fuzzy picture, fuzzy hair!

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6 responses to “Beads of Courage Update

  1. So glad to hear she is doing better. I’ve been keeping her – and all of you – in my heart and prayers.

    Jana

    (Genie’s cousin)

  2. This is Lindsay Walsh, Sophias mom! I am crying huge happy tears for this post! So much great news with the hair and being in the maintenance phase. Those beads are such a great tangible reminder of all shes been through and survived! Im so happy shes doing well. 🙂

  3. Chrissie,
    It is so wonderful to read YOUR entry! I am absolutely amazed at Emily’s beads of courage necklace. There will be many future days when Emily and you will go over the significance of each and every bead; I love how the different color beads represent overnights, transfusions, chemotherapy, etc. It puts some perspective in what little Emily has endured.
    Many blessings to the Love family!
    Cyndi
    http://advocateofhope.wordpress.com

  4. So glad to hear you are able to “breathe” for now. I can’t imagine the daily emotionally drain that you go through. May the Lord truly bless this time of Emilys maintenance phase. Think of you and your family often and pray for continued strength and healing.

  5. Yay! I wanted a bead update! I loved when Emily showed me her new hair on skype. I miss you all. You’re in my heart everyday! ❤

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