Fear, Pain, and Hope...
Fear, Pain, and Hope...
I'm so sorry I have not been posting. I cannot even tell you how busy things have been these days. The family has all returned to Florida, but we are still pushing hard to finish our home and move in. On top of that, John has been pursuing a couple of leads on jobs, and it looks like he may be going to work as early as next week! If all works out, he may be in a job where he can work three 12 hour shifts and have four days at home every week. That would work out so well for our family, as it is our deepest desire for John to have as much time at home with Ellie as possible!
Over the past couple of weeks, Ellie began having some pain. First in her back and then in her leg. We have been on something of a roller-coaster ride emotionally. The pain has been in areas where we know there is cancer, and at first we were preparing ourselves that this pain marked the beginning of the end for her. But then we remembered that just before the pain began, Ellie had done something while playing that was an unusual movement for her. And then after a number of days, the pain subsided. We have been able to give her relief from the pain through the use of a heating pad and Homeopathic remedies. The other night, just one dose of a remedy allowed her to sleep completely through the night without pain. We do have an appointment with a doctor to set up a plan should we come to the stage of needing drugs for pain control. In the middle of all of this - the pain, and family leaving, etc. - Loretta began researching and following up leads on various supplements and diets that we have heard about. We have already been using Homeopathy and certain dietary supplements to treat the cancer and help with Ellie's overall energy levels and such, but we have renewed our efforts to seek out the best plan for Ellie's care. (We are currently working with a Homeopath who is an MD in Internal Medicine, a PHD Nutritionist, as well as a Pediatric Internal Medicine doctor who has shared our experience on a personal level in his own family. We are also able to keep in contact with our Oncologist in NY, as needed. As you can see, we have a wonderful team that we know and trust!) We are now in the process of adding some things and "tweaking" Ellie's diet. When she was in the middle of chemo and radiation, it was just too hard for Ellie to take anything new or different by mouth - basic food was hard enough. We are finally far enough away from that to be able to try some things. And so, after all of the research, we are encouraged that there are still things that we can try to treat the cancer - and all will go hand in hand with the Homeopathic treatment. Already, after implementing just one new food, Ellie's energy is better and the pain is gone!
The emotional ups and downs of the past few weeks have been draining, but we are beginning to sense a leveling out in recent days. It is so hard to know what to think and feel sometimes. We know the reality - that Ellie very well may lose her life to this disease, but we have chosen to live in hope. Some may think that it is a totally unfounded hope, but it gives us the energy that we need to fight. Ellie is certainly not done fighting! She is motivated to do the things that it takes to help herself feel better. And most importantly, whatever the outcome, we refuse to allow this time to turn into a "living wake" for Ellie. We will not mourn for her until she is gone. And she is still very much alive... and happy.
We have been saddened lately to hear about 5 deaths of NB kids in the past couple of months. We knew two of them. Two months ago, Lillie Boyte, an adorable little three year old girl that we met in NY lost her fight with Neuroblastoma. She died 10 months after her diagnosis. On Monday, Grace Oughton died after her two year fight with NB (she relapsed once). She was also three years old. Her dad, Alec, was one of the driving forces behind "The Loneliest Road Campaign". If you go to the website: www.loneliestroad.org and click on "about us" you can see a picture of Alec and Grace - next to the pink angel wings. Alec is one of the fathers on the video when the website comes up. Our hearts break for these families. Please pray for them.
I don't mean to leave you on a sad note. We just put one foot in front of the other each and every day. It's all we know to do. Ellie's well-being is our top priority, along with Ethan's emotional wellfare. This is a walk that we can only do with God's help, and your love and prayers have been such a part of the process. We feel the hand of God on us continually, even in the down times. His presence is always there.
Once again I find myself without adequate words to thank you all. Many of you, and your children, have done such special things for us that I have yet to thank you for... I cannot tell you how often I see things that remind me of your thoughtfulness and generosity, and one day I will finally be able to tell you personally... Please know, until then, that I appreciate you from the bottom of my heart.