Monday, September 1, 2014

September is Childhood Cancer Awareness Month - how fitting.

For those who know me, Hi! For those who don't, Hi, I'm Juliet! -- busy mom of three kids and wife to a God-sent husband, living life in South Louisiana. 

I have always wanted to write a blog "for no particular reason" - thank you Forrest Gump - but just a place to share my rambles on life, to geek out on my favorite things (most likely Disney or movie related) and to showcase my custom invitations like so many of the other party planners/bloggers I follow.

Why begin my blog now? Well, September is Childhood Cancer Awareness Month and we just recently found our lives effected by childhood cancer. I'm hoping this blog will be a quick way to update family, friends and those interested, a neat way to document our journey, and even therapeutic for me. 

My disclaimer: I'm new to blogging so you'll probably notice multiple layout changes. Also, being born and raised in South Louisiana, I ramble, talk fast, and write pretty much how I speak, so I'm asking for pardon ahead of time :)
I still intend to use this site to share posts of my custom invitation, party printables, and party ideas. Hopefully, I'll figure our how to separate the two.

So our story begins...

Lily, 2009
On April 3, 2009, Lily Kate Raffray was born. Wait...that's a little too far back. 
Fast-forward five years to around April/May 2014 when we noticed Lily's right side of her neck a little swollen; then what seemed like overnight, there was a defined enlarge lymph node. On June 10th, we took her to the pediatrician who suspected it may be Cat Scratch. She had a blood test done and was put on a 5-day antibiotic. The pieces fit -- we had just found a stray kitten about two weeks before we noticed the enlarged node; however, the blood work came back negative and we were referred to an ENT.

The Plethora of Doctors' Appointments

Small white dot outside of the skull
pinpoints the enlarged lymph node.
At this visit and exam on June 17th, the ENT advised that the only way to see what's going on was to have a CT scan done first and either have the node removed for a biopsy or we could try another round of antibiotics (2) with a steroid and wait. We chose the latter. Lily had a CT scan that day and did GREAT through the process!

I'd like to just note that a friend, who is a pediatrician, advised me to discuss the meds with Lily's pediatrician because two antibiotics and the steroid was a bit much/overkill and not a good idea -- which Lily's doctor confirmed -- therefore, only one antibiotic was needed. I am so happy we took the suggestion especially since later on we found out that steroids can muddle the scans. So, thank you!

Fourteen days, three times a day for an antibiotic (Clindamycin) is quite a pain to remember and proved to be no luck with decreasing the size of the node. Back to the pediatrician (June 15th) who advised we have it removed for biopsy.
Through all of these visits we were told it didn't "feel" like cancer because the node was movable and mushy.
Our little selfie taken a few days before her surgery.
You can clearly see how large the lymph node had grown.

On August 7th, my baby had her first surgery to remove the lymph node. Again, she did great! No complaining or hurting and back to her normal giggly, wild self within just a few hours.

All done - just 1 band-aid!
Lily and "Cupcake"
Right before "surdery."

Umm, isn't that Cancer?

Over the next few days, life was normal as we continued on with work, football, cheer, dance, birthday parties, etc. Lily's older brothers, Luke and Brendon, had started school and she would be starting Kindergarten in just a few days.

On Tuesday, August 12th, while driving home from work, I received a phone call from the ENT saying he was coming out of surgeries and received Lily's pathology report with results of Hodgkin's Lymphoma (as known as Hodgkin's Disease) and wanted to refer her to St. Jude. The only real question I asked was "Umm, isn't that cancer?" - based on the fact that one of my dear friends has had Non-Hodgkin's Lymphoma. And, the words "St. Jude" means serious to me. He gave an explanation about white bloods cells, this disease being treatable and curable (blah blah blah, is what I remember), but really I just wanted to say "Dude, it's ok to say it's cancer" as my heart sunk to my stomach and then my feet.

I finally made it to my mom's house who was keeping Lily for the week. Of course, as fun as irony can be, the evening news was on with a segment about Robin Williams's work with St. Jude (he, of course, died just the day before and my heart ached from his loss). I gave Lily a long, tight hug and shared the news with my mom and brother. Now just to note, my family is NO stranger to tragic news. In July 2006, my brother broke his neck in a diving accident while vacationing in Cancun which left him paralyzed from his mid-chest down (quadriplegic). That story may be another entry for another day.

I shared the phone conversation with my husband and then began my research. I had my first and only real breakdown thus far.

The Staging Process

Lily started Kindergarten that next day and the day after we had another ENT follow-up appointment to have the stitches removed, discuss the pathology results and the next steps.

Waiting for the "radioactive
sugar" to settle.
Mom's wondering if she'll
get super powers!
The following week, we meet with Dr. Shelia Moore and her kind staff at St. Jude's Baton Rouge Affiliate. There was no waiting around in the waiting room or in the patient room - they get down to business and first things first, they need to stage the cancer. We discussed family history, her symptoms, and the process with St. Jude. Dr. Moore talked with Lily about what's going on in her body. Lily had more blood work pulled, a chest x-ray done, and we schedule a PET scan.

The PET scan wouldn't have been so bad if they were able to stick the vein the first time. She had been a great trooper during all the previous vein sticks. No crying or yanking the arm; she just likes to watch everything. This time, however, he had to dig around for the vein after he stuck her arm and all hell broke loose. An hour later and four sticks to the arm, we finally got a working vein. She feel asleep during the actual scan and we were exhausted, too.

So, that was Friday and we meet with Dr. Moore on Monday morning for results. The PET scan showed that the cancer was contained in the right side of her neck and with the combination of the other tests and symptoms, she felt confident diagnosing Stage 1.

Off to St. Jude

Dr. Moore had arranged for us to meet with the doctor and team at St. Jude Children's Research Hospital that will handle Lily's case and treatment plan on Wednesday, August 27th . So we were off to Memphis!

I believe I've exhausted my new blog for one day :) I'll highlight our trip to this remarkable hospital and her chemo treatment in the next post(s) but to quickly summarize, she will need 8 weeks of chemotherapy, which will be administered at the BR Affiliate - so we are home. We are all good and just doing what we need to do. I give praise and thanks to the Good Lord for this diagnosis and our strength.

No words can express how much we thank our family and friends for their love, support, and prayers - especially for helping out with the boys last week when we left on such a short notice. WE LOVE YOU! We are also grateful to her school, teacher, and classmates for being so understanding over the last two weeks. Lily misses her friends! Hopefully, our experience with childhood cancer will be short and our Lily-pad will be cancer-free very soon.

Juliet and the Raffray clan (Roger, Lily, Luke & Brendon)

Okay, one final note: 
September is not only Childhood Cancer Awareness month (gold) but also Hodgkin's Lymphoma Awareness Month (violet/purple). My life has been surrounded by the purple and gold colors of LSU (also my Alma Mater) but this is getting ridiculous! LOL!!!


  1. Good job. You summed it up nicely!

  2. I am praying for Lily and your family. Tell Roger, as we used to work together at Amedisys. I also have a precancerous uterus condition, currently taking cancer medicine (Megace) and hope to have my hysterectomy soon to remove it all in November when I get insurance. May God pour forth His blessings on y'all and remove her pain and worry.

    1. May God bless you and keep you safe as well. Thank you.

  3. I am praying for Lily and all of you. I too had my breakdown that Friday morning when you left daycare. You wrote so beautifully your thoughts and I'm so glad we have this to keep us updated. Lily is in great hands @ St Jude and I am ready to help in anyway you may need me. Hugs to you all. Love y'all!

    1. Thank you, Denise. I'll try to bring Lily by for a visit soon :)