Thank you all for your patience with me. This was a long entry to write and I wanted to make sure that I could fully express all of our decisions of late. I put out Ellie’s test results earlier today because I honestly didn’t know how long it would take me to finish writing this one… and I didn’t want you to have to wait that long.
I know that I hinted at some changes to come in one of my more recent posts… well “change” may be a bit of an understatement. The reason that I was offline at the end of our Montana trip, was due to the extensive hours we were spending discussing all of the options for Ellie’s treatment and care.
Those of you who have been following Ellie’s story since the beginning (and the new, brave among you who have spent countless hours reading to catch up) know the kinds of hardships that Ellie has faced with drug sensitivities, sickness, and setbacks. We took the month of June off to try to get Ellie stronger and better able to withstand future treatments, but what we discovered is that one month was not nearly enough to truly give her the strength to make it through any more invasive treatments. After one month, Ellie gained about two pounds and her counts ever so gradually and sluggishly began to climb. To put it bluntly… her body is worn out. That is not to say that she doesn’t look great and full of energy – she does. But that is one of the most frustrating parts. When Ellie feels good, she bounces off the wall, and right now she feels better than she has since before her diagnosis. But one more thing will put her over the edge so quickly, the doctors will not even see it coming. Why can we see it coming? Because we are her mom and dad. That’s what parents’ do – they know their children. I know in my deepest of hearts that she cannot take this anymore. I’m not saying that this kind of medical treatment is wrong or bad. We have tried it – and it has gotten Ellie this far. For that we are so very grateful. And given the choice to do it again, I don’t believe that we would have done anything differently. And I’m not even saying that we are walking away forever. We don’t know what the future holds, and we are not going to make any claims about what her treatment will look like in the days, months or even years to come. We talked with Ellie’s oncologist today, and he would like to repeat the tests here in NY in two months. We will continue to have her monitored very closely to track what is going on in her body.
What will we do? Our plan is not to fill the void with a vacuum – close our eyes and pretend that we are on vacation - but it is with great purpose and dedication that we will pursue Homeopathy as Ellie’s current treatment. Homeopathy is an alternative treatment with which we are very familiar and comfortable. We have seen dramatic positive results over the years using Homeopathy with both of our children, as well as ourselves and other family members. We have a trusted Homeopathic doctor who has been helping John’s family for over 25 years. I tell you all of this, not to say that there are any guarantees, but to let you know that we have a well-researched and thought out plan. In the world of Neuroblastoma, there are no guarantees. We have recently heard of some sad stories of violent relapses in children who have done everything that was recommended in the world of allopathic medicine. And there are some wonderful success stories. There are just no guarantees. I’m not suggesting that any other parents follow our lead. This is our path to follow for Ellie. We welcome everyone to watch our journey. Watch and pray.
And this brings me to another change. Because of our commitment to Ellie’s new treatment, we will be relocating, as a family, to Montana. We have looked at all of our options, and what it will take, realistically, to treat Ellie homeopathically. The truth of the matter is that we need Loretta’s help. She has already put her life on hold for nearly a year to help us in countless ways – always from Montana. When we approached her about taking us on in person, indefinitely, she graciously agreed to “keep” us. While making this decision to change treatment plans, there really wasn’t a choice between doing this at home or Montana – it was “if we do this, it must be in Montana.” I don’t know how to fully explain this to you, but in order to give Ellie what she needs at this time, we need to make a complete life change. And we need help. We intend to give this a 100%, concerted, all-out effort. But we cannot do this alone. The world of Homeopathy is complicated, and we owe it to Ellie to give her the best chance. Working as a team with Loretta will give her the best chance.
I’m sure that you have a thousand questions… There are many logistical details that are yet to be determined. John’s parents are driving up to NY this week to get us and our stuff. We will drive to Virginia where we will meet with the Homeopathic doctor. Loretta will be flying in from Montana for the Tuesday appointment. John and Ethan will continue on to Florida with Stan and Pat, while Ellie and I will fly out to MT with Loretta on Wednesday. Ellie and I will stay with Mike and Reni (Loretta lives on the property) until we can make more permanent arrangements. John will get rid of most of our stuff in Florida and only pack what we know we will need. He and Ethan will drive out with some of his family at a yet-to-be-determined date.
The decision to move has been heartbreaking, particularly for me. I do not like it when my world is turned upside down. I love my family and friends beyond words. I love my house. I loved my life. But the truth is - my life will never be the same again. I will never have the life I had before, but by the grace of God, it may even be better. The decision to take the children away from their grandparents was the hardest of all. But people move for many reasons, and we’ve come to realize that our daughter’s life is the best reason of all. For now… I’m overwhelmed and tired. I’m scared. I’m sad. I’m also a little excited. Feelings can be fickle. Most importantly, I have peace. I know that this is the best decision that we can make. I know that it is right and good. I feel like our little family is standing in a small room with two doors. One door has a red light on it and the other has a green one. The choice is obvious, but when we open the one with the green light, we can’t see anything. None of the details of what we will experience are visible – even down to where we will live or where John will work. The only direction that we have is “go.” So we will go. I am reminded of a quote that I put on a much earlier blog entry, but I believe that it bears repeating… if for no other reason than for my own poor heart:
I stood with the man at the gate of the year and said to him “give me a light that I may tread safely into the known.” And he said to me “put your hand into the hand of God and step out into the darkness. That shall be to thee better than a light and safer than a known way.”
And somehow, when one’s hand is in the hand of God… nothing else matters.