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?
Love.

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.

xxoo-
Juliet

6 comments:

  1. I am praying for Lily. I hope this prayer brings comfort and strength for you Juliet!

    Lord God,

    I praise you for your compassion and your goodness.

    Marvelous are your healing mercies.

    Lord, as sickness has invaded my little one's world, I stand by watching and feeling helpless. But Lord, I am reminded that I am not helpless but powerful in prayer.

    I lift up to you my precious child, and I ask for your healing power to fully permeate every part of my child's body.

    Lord, I ask that my child's body be quickly transformed into radiant health as you respond to prayer and your healing promises in your Word.

    In Jesus’ name I pray,

    Amen

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  2. I just love reading your blog Juliet! You've always been so great with words and keep me listening. Thanks for sharing Lily's journey with us. Praying for ya'll daily��

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    1. Thank you, Ashley. I appreciate the kind words :)

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  3. Praying for you Juliet and for sweet Lily.

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