Monthly Archives: December 2012

Saying Goodbye to 2012

About this time last year, there arose many questions regarding what devilish creature possessed our little Emily. She had been a sweet, vivacious child who loved to laugh and play, but suddenly, should her mommy stray too far or she get tired or some invisible ailment strike her, she turned into a vicious, screaming banshee. We would all just stare at her in shock pondering how a little girl could be so “spoiled,” so “expressive,” or, could she really be that tired? Little did we know that what we were witnessing was a 19-month-old baby in pain without any way to communicate it with us other than screaming.

It would be another month or so of this behavior, of Chrissie unable to go anywhere without Emily, unable to set her down, with other symptoms slowly showing, before Emily would be diagnosed with Leukemia, with A.L.L. Throughout the first weeks of the New Year, Chrissie was exhausted. Sisters would frequent her house, helping with odd things so that she could focus on Emily or simply sit down as she was having to carry Emily for every household task; cooking, cleaning, folding laundry or, if she set her down to do a task, with Emily screaming on the floor. We all look back at that time with a feeling of guilt. How could we have not known? How could we have thought for even one moment that Emily was just acting like a little spoiled brat?

This year, as we prepare to say goodbye to 2012 and welcome 2013, we are thankful that God spoke to the doctors at the Emergency room February 9th. We are thankful that Chrissie continued to seek answers in spite of how tired and emotionally drained she was after two months of the above. We are thankful for the family and friends that have come forward, serving our family with time, money, meals, love and most importantly, prayer. We are thankful for the strangers who have reached out to help educate us on A.L.L and help us adjust to this new world that has become our norm. We are thankful for the nurses and doctors at the UC Davis Children’s Hospital who have helped keep us sane, provided blankets and pillows for the family members staying with Chrissie and Emily, for the entertainment they provide to our Little Stitch, for them opening in prayer before a procedure when we are too distracted to do so, and for them becoming a part of our ever-expanding family. God truly has blessed us this year.

For 2013, we enter the year with Emily on her Maintenance phase. A deceptive word as it makes you think there will be less chemo. With a spinal tap including intrathecal chemo, followed by intravenous chemo and a prophylactic antibiotic infusion once a month, a week of steroids each month, and a daily dose of chemo at home, Emily will have chemo every day for the next 2 years. Overall, she is doing well. Steroid Week is the family’s least favorite time of month, but Emily’s hair is growing back and the break from daily hospital trips is a welcome relief for the Love family.

As you settle in with your family to celebrate the coming of the New Year, please accept our humble gratitude for serving our family the way you have in 2012. God truly has done great things through you and we pray He leads you to even greater things in 2013!

 

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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!