Reluctant to post….

Again I find myself reluctant to post, why you ask? Difficult decisions have had to be made that required much discussion, thought, research and personal evaluation. It isn’t easy to step outside our safe circle and share our struggles sometimes.
We returned to Memphis and St. Jude Children’s Research Hospital June 18th to have preliminary tests that would lead into participating in a phase one Chemotherapy trial for Emma. All the tests went well, EKG/ECHO looked good, blood work was good.
The MRI showed a reduction of the largest tumor mass (evidentially from the radiation therapy in April) and that was encouraging. However, there are several new growth areas and while small they are spreading further away from the original tumor site. We were prepared for this information, but preparation never makes the knowing any easier.
After talking with Emma’s Doctor’s, carefully going over the phase one protocol, and discussing the possible benefits and disadvantages with our family we made the decision not to participate in the trial.
This may seem like a foolish decision and we understand that some will not agree, however we ask for your continued support never the less. In an effort to help you understand our decision and bring you with us on our journey let me explain……
Medical trials have four phases. The first phase being the first time the drug or drugs are tested on human subjects. Jump to the fourth phase when the drug has been through many tests and human test subjects and is ready for FDA approval and general use.
We felt that because this trial was a phase one trial with no known benefits to the cancer Emma has and because there was only one other human participating in the trial there was very little chance of benefit or tumor reduction, or even cancer cell growth cessation.
Our other choice of action was something with viable and proven results. Juicing. There are hundreds of testimonials from cancer survivors who have made the choice to try the juicing lifestyle and seen positive results.
So, we thought since we have a juicer at home, could be at home with our family and friends we’d try the Juicing diet. Emma made the final decision without pressure or coercion. We came home June 24th. I am proud to tell you that Emma has been juicing faithfully every day since we returned home. She does eat solid foods as well. She has cut out all refined sugar or products with sugar, all meat and dairy products, and is eating a vegetarian/vegan diet full of whole grains, legumes, fresh vegetables and fruit to supplement her juicing.

Emma's red bowl gets filled every day with a variety of fruits and veggies for juicing.
Emma’s red bowl gets filled every day with a variety of fruits and veggies for juicing.

Her doctor reduced her steroids before we left St. Jude and she has tolerated the lower dose very well. Her joint pain is gone completely; she is much better natured and feels better than she has in a long time. She is sleeping better but still wakes more than she would like. We’re working on that!
We are currently pursuing a position for Emma in the Uchee Pines Lifestyle Center in their 17 day Health Program.
Emma will be 18 in December and at that time we will revisit traditional medical treatment options available in the adult arena. Between now and then we will continue to be in touch with her medical professionals at St. Jude and have regular checkups as necessary.
Thank you all for your love, support, prayers, and positive energy. There are many times we don’t know what is coming next, but we know you are there beside us!
Please look in our Links section for links to Uchee Pines, our favorite Vegetarian/Vegan cooking blog -suggested by my lovely sister-in-law Dre, and a link for some amazing juicing recipes we recommend you try! Juicing is for everyone!!


3 thoughts on “Reluctant to post….

  1. Ed Walsh

    We are still praying for healing. Juicing and vegan diet really work well, we try to be close to this diet ourselves. I understand about the trial. Hang in there!

  2. Leslie Smoot

    Sometimes there is no right or wrong answer, no black or white, and we have to make the best choices we can based on the knowledge we have at the time, the whisperings of our hearts, and our belief that God is watching over us and will see us through. Emma touches every member of our family with her beautiful spirit. We continue to pray and hold Emma and your family close to our thoughts and hearts.

  3. We continue to pray for healing and that God will show you the right path to take. We have to believe that this is His plan for now. We love you so much. Thank you for the post.

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