Thursday, November 27, 2014

A Time of Thanks

2014 has been one out of control roller coaster ride for me and my family...difficult, sad, and challenging - yet filled with an abundance of blessings, love, and generosity from our community, friends, family, and strangers. We persevered. We grew. Truly God's hand at work.

So it's seems fitting that I share a few of the wonderful moments in Lily's cancer journey that we are so thankful for on her road to remission.

I give thanks for fairy godmothers, unicorns, and a ray of sunshine

When the nurses asked Lily what type of party she wanted for her last day of chemo, she said a princess party and to ride a unicorn. The nurses and I exchanged looks and I said "oookkaayy, anything else maybe?" LOL! But, clearly St. Jude nurses are Fairy Godmothers because her nurse said, "I can actually make that happen." And the rest, as they say, is history. Here are just a few of the links of stations that picked up her story:
Baton Rouge, LA
Johnson City, TN
Myrtle Beach, SC
Pollok, TX
Moselle, MS
Shreveport, LA
Columbus, OH
New York Daily News
Post by ABC News
Post by Good Morning America - GMA, what?! We are still in shock over this coverage.
Post by Our Lady of the Lake Children's Hospital - to see more pictures of Lily's party

Along with the St. Jude Baton Rouge Affiliate nurses, doctors, and staff, we would like to THANK the following companies and organizations for their generous offerings. Please check out their services!!
Here are a few more pictures from the party. This was truly one of the happiest days in my life that I will never forget. For a moment in time, my beautiful ray of sunshine brought a smile to thousands of people as her "unicorn story" ran nationwide.

Princess party decorations
Princess celebration cake
"This is all for you, Lily."
"We are celebrating your Last Day of Chemo." 
Nurses & staff sing a "No Mo Chemo" farewell song.
Crown of flowers
Thanks State Troopers
Photo credit: Amy Martin Photography

Photo credit: Amy Martin Photography
Lily meets Willow the Unicorn

The Raffrays (Photo credit: Amy Martin Photography)
Photo credit: Amy Martin Photography

I give thanks to 3 words

Two weeks later we headed back to St. Jude for post-treatment tests...never did 3 words (or is it 4) provide so much relief and prayers of Thanksgiving!

We are so blessed to have such a strong community of support. Your prayers, words of encouragement, texts, calls, emails, Facebook messages, gifts, etc. meant so much to us. We truly cannot thank you enough...

We were at St. Jude for Halloween - amazing! They hold back no expense to give these children a wonderful trick-or-treating experience. I have tons of pictures to share from this trip so I'll save those for another post.

I give thanks for walking

On Saturday November 22, we participated in the St. Jude Give Thanks. Walk. What an inspiring day to honor those survivors and angels who battle such terrible diseases!

It was announced that Baton Rouge had the largest participation out of the 66 communities across the nation and raised close to $450,000! WOW!! Read more from The Baton Rouge Advocate's article.

"Team Lily R" raised close to $5,000!! Every dollar donated goes towards patients' medical expenses so families going through treatment, like ours, never receives a bill. What a Heavenly concept. It's never too late to donate to St. Jude. Your heart will fill with joy each time. 


"team Lily R" - minus a few.

I give thanks to Ole Maw

Finally, I give thanks to the Lord that this beautiful woman was in my life for over 38 years.

After the past few months of pushing forward to get Lily better, I received the hardest punch in the gut when my grandmother, Mary Templet, died suddenly on Sunday, November 16th.

Her obituary.

My heart aches for you and my mind still can't believe that you are gone. Your support over my lifetime is so dear to me as well as the love you've given to my children. Thank you for always calling me on my birthday. Thank you for giving me my incredible mother and along side her teaching me so many life lessons that has made me the woman I am today. Thank you for joining in on Lily's tea parties and checking in on us through her journey. I wish we could have had one more coffee pot, one more visit. I wish you could have celebrated Lily's remission with us. I love you.

I wish you all a bless Thanksgiving day with family and friends.


Thursday, November 13, 2014

Staying Strong - Chemotherapy Recap, part 2

Sharing this post is long overdue! I started writing the recap of Lily's last month of treatment before her No Mo Chemo party. Here it is, almost a month later, after a trip back to St. Jude and receiving the great news she's in remission, I finally finished this entry...well, better late than never, I guess.

During the past few months, I was often asked "How are you?" Honestly, I was fine, we were fine. Without a doubt, we were shocked when we first heard that Lily had cancer and apprehensive about what her treatment plan would entail. But, we just adjusted our lives and moved forward to do what we needed to do for her. In my last post, I finished talking about Chemo Week #4 where Lily had been really sick, not wanting to eat, having joint/muscle pains, and I resigned from my job.

Moving forward...

Second (and last month) of treatment.

Chemo Week #5 - Much Better

Lily was beginning to feel much better after the rough week before. We had her on track with medications, she was eating again, and went back at school. I spent that week fall cleaning my house - you know...vacuuming baseboards, wiping down fans, super dusting, de-cluttering, leaving windows open, etc.

At this week's appointment, we were greeted by some special furry volunteers from Therapy Pets: Tiger H.A.T.S. and Pet Partners. Lily loves animals but not a fan of dogs. These dogs were so sweet but it took a lot of convincing for her to pet them. Seriously, that black dog is ginormous! I think his name was Zeus or Maximus or Rex, or something completely opposite, like Tiny.

Anxiety also started to build - saying she wanted to go home, she would "come back tomorrow." She fought to put the numbing cream on her port so it pushed back the time for the nurses to access it. They were so much more patient than mommy... Other than this struggle, this chemo week was rather smooth. 

We also had a nice weekend and the weather was beautiful! On Saturday, Lily cheered for the Wildcats again. My aunt treated Luke and Roger to the LSU football game that night. I was so happy for Luke. He has been such a great sport and has shown very little sibling jealously about Lily's extra attention and gifts during this time. He's only asked on a few occasions why he didn't get anything (specifically a video game, if you know my son, ha!) since he broke his arm. We used this opportunity to explain their differences, generosity of others, and humility.

On Sunday, we saw Mary Poppins performed at the Baton Rouge Little Theater. Great cast, great show! I was so touched that "Mrs. Banks" gave Lily her gift of a beautiful bouquet of red roses! 

My pal Zachary Denham as "Bert" and Melanie Couvillon as "Mary Poppins."
Richard Williams - "Robertson"
 Celeste Veillon - "Mrs. Banks"
Albert Nolan - "Mr. Banks"
Mrs. Markay - "Bert's" mom
Molly Blanchard - "Jane"
Dana Lux - "Miss Andrew" or
as we said, "Evil Mary Poppins"

Chemo Week #6 - Lily's Over Chemo

Although she looked content in this week's picture, her anxiety really grew over these last two appointments. All morning she fought me and cried not to go to chemo. At the clinic, she fought the nurses and cried some more. She was over chemo. It took a very long time to access her port, to the point where we just had to hold her down and stick it. With the help of two other nurses, we held her arms and legs while she sat in my lap. That was tough...

She wanted to sit in my lap the entire time. Not long after we finally started her drip, I read about Breanna Bercegeay's {Cheering for Breanna} passing from her 16 month battle with AML. My heart sank for this hometown family I never met and a girl whose story I began to follow not long after we found out about Lily's cancer. I just kissed and cuddled my bald-headed beauty tight. I began thinking about all of the 'what ifs' with our journey and I prayed for this family whom I could empathize with for a brief moment.

Tutti Frutti makes it all better!
Wearing our prayer shawls.
Almost over; all smiles now.

Another smooth week of chemo done with no sickness, no pains, all smiles.

Chemo Week #7 - What is a "Trooper?"

I understanding why people call Lily a "trooper" or "hero." Despite her mood swings, which she couldn't always help due to steroids, and the building anxiety over chemo, she's a tough girl. She kept going to school, cheering, dancing, playing, running, laughing, and even fighting with her brother. I'm really proud of her willingness to go with what needed to be done. She always said she "knows" what to do and wanted to do many things herself (i.e. removing band-aids, taking medicine, cleaning her port area). She liked to watch and help the nurses when she could. She never really complained about anything hurting just for the sake of whining. Even losing her hair never phased her.

This week's chemo went fairly the same. A sweet volunteer made bling bracelets with Lily and we watched a movie. After every treatment, she always slept for a few hours at home but this week she crashed right after leaving the clinic.

That Saturday, she had a bad morning. We headed out for football games and she kept telling us her tummy hurt. She didn't want to eat either. Luke's game was at 8 am game and she cheered at 12:30 pm - so it was going to be a long, hot day. Not long after his game ended, she began vomiting. All the way home. I sat in the back seat with her, garbage bag in hand. She slept most of the rest of the day. After looking back over the medications she received this week, I realized it was the same cocktail from week 4 that knocked her down :( A bad combo of chemo and Louisiana heat.

My poor baby.

Chemo Week #8 - We made it!

Every cancer diagnosis and treatment plan can be so different. We were blessed Lily's was caught early, treatment was short, and we had a positive prognosis. But, cancer is cancer and you never know if it will affect you or your loved one and what may come from it...which will now forever be my worry for Lily. I know there are so many more seriously ill children fighting tougher battles, so I'm a little beside myself by all of these stories and the out-pour of love and support from our family and community.

Her last day of treatment will always be one of the most memorable days in my life. It's hard to describe how I felt, other than that feeling of "it's over." There is no doubt that every mother thinks their daughter is beautiful but Lily looked radiant this day. It's like her body knew the day was a celebration and she glowed. I can only assume this was a glimpse of how I will feel on her wedding day.

We took Luke with us so he could see her chemo day process. Of course, being my little science man, he had to be front and center watching every thing they did on Lily, asking questions, playing with the instruments, until he guess games! That little stinker was crazy over the fact that she had an Xbox to play the whole time she was there. LOL! So during the drip time, she painted and he played football video games. Ahh, my kids :)

Lily's signing her name on our Thank You sign.
Trusty "Cupcake," the Unicorn.

We are so grateful to the care Lily received at the St. Jude Baton Rouge Affiliate Clinic!

After her treatment, we celebrated her No More Chemo party with family, nurses and staff - and what a festivity! I'll share all the fun details and pictures in my next post ;)