Tuesday, September 30, 2014

St. Jude Give Thanks. Walk.

Dear Family & Friends,

Even though today is the last day of September's Childhood Cancer Awareness Month, the awareness campaign should never end because the statement, I never thought it could happen to us, is true. Lily has had her ups/downs during this treatment time and we're now on the home stretch.

Our little cheerleader :)
We have received such sweet gifts for Lily and so many of you have asked how can you help. Well then, I'd like to share this opportunity with you to help us give back to St. Jude so they can continue their mission and assistance with families and, yes, one day find a cure to end cancer. Everyday we are still amazed that this medical facility, the research and the level of care it provides really exists.

My family is participating in the St. Jude Give Thanks. Walk. spearheaded by my wonderful mom, Vanessa, who is truly our "team captain." We invite you to join our team to participate in the walk; I'm sure it will be a day filled with tons of fun! But, if walking is not your thing, please consider donating to "team LilyR" to support our efforts to give back to St. Jude and reach our goal of $1500. I believe we are half way to our total goal :) Yay, mom! Each participant has their own page and individual goals that you can view as well. We are looking forward to spending the day with other families who have also been touched by St. Jude.

St. Jude Give Thanks. Walk.
Saturday, November 22

We're kicking off the Walk in our own special way with a "No Mo Chemo" party for Lily on the Friday evening before at our family's traditional Friday Coffee Pot Time. What's coffee pot time, you ask? For many years now, most of my family has coffee with my grandparents on Friday evenings. I love this tradition and my kids look forward to these visits, too. But this time the whole world is invited...well not really because although my grandfather stocks coffee like he's preparing for the Apocalypse, if 7 billion people showed up at his house he may not have enough cups. LOL!

No worries. I'll share lots of pictures ;)

As always, we thank you for your prayers and generosity.


Sunday, September 21, 2014

Our Visit to St. Jude

Thank You

Roger and I would like to take this opportunity to THANK YOU for your prayers, thoughts, calls, texts, cards, and gifts for Lily. We are in awe from the outpouring of love and support. Once again, my entire family has been touched by the wonderful compassion of people, both friends and strangers alike. We cannot give thanks enough to God that we caught this cancer so early and that her treatment is very short.

From The Raffray Family, we thank you.

So, our story continues... 

My intention was to update this blog once a week, but that hasn't gone according to plan. So, here's a quick recap of our stay at St. Jude.

I ended my first post with Lily getting a PET scan, X-ray, and blood work to stage the cancer. A few days later we reviewed the results with Dr. Moore which confirmed Stage 1-A -- this means the tumor was only located on the side of her neck and she only had one symptom (enlarged lymph node). We prepared to leave for Memphis the next day.

Traveling with one child was easy -- no fighting, fussing, nagging, "don't touch me," "that's mine," or "leave me alone." Don't get me wrong, I love going on trips with my family, but this drive was quick, quiet, and yes, peaceful. LOL. Lily colored and watched movies while Roger and I had nice conversations. We made a few stops along the way. And, we're not quite sure why, but when we stopped at a rest station, Lily had to sit for a just a moment on the park benches. Silly girl. We arrived at St. Jude that evening for registration and assessment, then off to bed.

Experiencing a Hospital Like Other

St. Jude is truly a hospital like no other I've every visited. The best way I can think I can describe St. Jude is like being on a cruise. You get your itinerary in the morning for the day's main events but you are free to discover the ship and excursions along the way. It doesn't matter how you look in a swimsuit because everyone else looks just about the same way. Everyone is enjoying their time, relaxing, or sleeping. No one is sad or crying. Over the course of the week, Lily's schedule included lab work, X-rays, EKG, pulmonary tests, radiation consultation, chemo consultation, etc. - as well as eating ice cream, coloring, playing, and pulling surprises from the treasure chest.

Snapshots of St. Jude:

Kids' transportation - the only way to travel.
Always coloring.
Ready for chest and dental x-rays.

Every hallway had beautiful, detailed, and cheerful murals:

Walls full of imagination and happy thoughts!
I wish every hospital would get rid of the neutral walls and add more color!
Lily just being silly before her EKG and Pulmonary tests.

Images of  children, various races and physical states, also line the wall.
Here is a lighted mural leading to the cafeteria. 

Other images of the hospital and campus:

Waiting rooms were themed and filled with
toys, video games, and arts/craft.
St. Jude guards the main entrance.
I know it's wrong but this made me giggle.
More waiting areas, more fun stuff.
Ice cream scoop fun wall.
Maze walkway
Lily found a new friend at the gift shop.
Hopscotch anyone?

We even had an excursion to the Memphis Botanical Gardens one evening:

The Treatment Plan

Hodgkin lymphoma, cancer of the lymph system, is one of the most treatable and curable childhood cancers. The treatment plan proposed for Lily, called "Stanford V," is based on a research study in which the drug combination is given over a shorter amount of time (8 weeks) and with lower total doses than the standard chemotherapy commonly given for Hodgkin lymphoma. She would be able to receive treatments at the BR St. Jude Affiliate hospital and after the 8-weeks, we would return to St. Jude for a full reevaluation and round of tests. If the disease completely goes away after treatment, she will be finished and no radiation. If radiation therapy is needed, it will be a lower dose and directed only to the tumor area to minimize exposure to normal tissue. Along with the chemo drugs, Lily would also have 8 weeks of steroids and other meds to help prevent infections and to manage the typical immediate side effects of nausea, vomiting, and pain.

My Daughter Becomes Iron Man - kind of.

For chemo injections, fluids, and/or any blood work needed, Lily had a port line - or as I called it, her "Iron Man" - surgically installed under her skin. [Seriously folks, the port looks like a mini-me Iron Man thing - unfortunately she doesn't have super powers and can't blast anything. Bummer.] The line leads directly to her heart, lessening the need for arm sticks or "ouchies."

The Smart Port
or Lily's "Iron Man"
Ready for surgery.
"This is how the port works"

A Child Life Specialist is always on hand to provide education, comfort, and lots of fun distractions for the children to help ease their little nerves. They are gifted at what they do and are always happy, always smiling. She showed Lily a special doll that had a port line for her to learn hands-on how the port was installed, how it works, as well as explaining all the details of the surgery.

The nurses and doctors are so gentle and kind at easing our nerves and answering our questions about the possible complications of putting the line into her veins and heart. As anyone can image.
One parent was allowed to go with the child for anesthesia and the other could wait at the door. Lily wanted her daddy to be with her and I was ok with that - whatever made her feel comfortable. I took a deep breath and realized to keep my daughter well, this was the no turning back point. I watched at the door and in 5 seconds she was out. 

She did very well during surgery.

Chemotherapy Begins

The next day, she had a pulmonary function study and an Echo/EKG done - all a part of their requirements before they can begin chemo. Lily checked out perfect for both tests. 

Many thoughts, worries, and questions swirled in my mind. It's a surreal feeling to sit and watch these drugs drip into your baby and understand what short-term and long-term side effects may come, wondering if it will work, wondering if there was another option - maybe acupuncture or herbal remedies - but then I came back to reality and gave into trust.

Again, she did great, never complained or felt sick.

That evening, right as she was finishing chemo, my aunt and uncle stopped to visit while driving on their way home from vacation. We gave them a tour of the hospital and had a very nice visit in the memorial garden. 

Lily did fine during the night until the next morning...

Coming Home

The next morning, we had one final assessment check to clear us to go home. Tiredness and tummy aches were setting in and this is more or less where we've been thus far.
Thank goodness for the wagon's fold down seats.
I love this picture.
She wanted me to hold her hand.
Gosh, I've rambled again but I had so much to share. Thank you for taking time to read our story and for your prayers. I will share more soon.


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!!!