Wednesday, December 11, 2013

Eli made a paper-weight picture holder at school for Daddy's desk.
I am not quite true to my word. Technically, it is Wednesday morning when I’m updating, not Tuesday. But, Tuesday was just a whirlwind of organization and re-organization, so we just didn’t get to leave town until late in the evening. We didn’t roll into Grizzlies until about 0040 hours. We had a productive meeting with the holistic doc and nutritionist this afternoon. We are implementing the “holistic protocol,” is what I will call it, as best we can immediately - why not? To say it is challenging is like saying climbing Mt. Everest is challenging. Still I don’t have time to write much, but we have no room to “play” or “cheat” or “ease into it". The time is dire, so if it is going to work as the doc says it will, it will require strict abidance. We are at the edge of do or not-do. Even when I do have time I won’t be able to explain it all because I’m not anything - not a chemist, or a doctor, or a teacher - I’m just a plain Alabama girl sitting and listening with about 10% of it being retained, and that is just retained that is not necessarily understood. But, we need Eli’s body to use it’s natural ability to choke down the diseased cells. The doctor that we are working with is a pharmacist and his “protocol” is a cellular level attack. In addition to supplements, oils, oxygen, massage, sun, rest and good thoughts, it requires that Eli eat only raw food. Ok, now, this is a 9-year-old. This is a 9-year-old with my genes. What happened to Vic’s carrot-consuming genes? I guess they got flushed because Eli WILL NOT go near a bit of fresh anything. But, he will drink the fresh juice, and he will drink it with anything in it as long as there are no “pieces.” So, we are pumping him full of juice, giving him oils, and he is eating lots of nuts. He has sampled some seeds, and we found some kind of raw pressed wrap (I’m making it up, can you tell?) squares stuff that I do not want to know what is in it, but I think I caught the word “dates” between the nutritionist and Vic, so I shudder to think. Anyway, he has done well today, but he is going to start struggling with not having a big meal to sink his teeth into especially when we are all together. So, if we decide to put all our eggs in this basket we’ve got some logistics on arranging the best environment for success. The doc would also work with us if we decide to pursue chemo, so it should always be something we could do to help Eli’s body be healthy even if it is hit with poison again. Again, I will probably talk more about that approach. It is interesting.
Christmas party with his class.
We are not sure what to expect today. I’m sure we will review the results, and be told again that there is no cure and no treatment. So, I get to be hit in the gut with that some more. After that we will decide what guinea pig path we want to put him on. There is a window of quality of life and quantity of days, so we are going to be trying to blindly hit it. Eli hopefully will have a fun day with Child Life while we meet, but I’m sure they want to see that he understands what is going on, but I really hope he just has fun doing something. He is in such a good mood, and feels good. I just can’t take my eyes or keep my hands off of him. He seems to be glad that both of us are here and have his full attention. When he was in treatment, he was always so sad when Vic and I would swap up with him. I switched with Vic one time while he was in-patient with chemo and he started to cry that he wanted his daddy. And, I told him that we could switch back. If he wanted his daddy to stay with him, I would switch. He just whimpered a little and then just burst out crying, “I want you both at the same time.” It was pitiful, and I hated it. So, this is rare for him and he knows he is getting some special treatment. We hope to have some direction by the end of the day, and headed back to Alabama tonight with a plan. But, we’ll see.
Playing a cups game at the party.
Tuesday, Eli had a ton of fun at his class’s early Christmas party. Since we do not know our plans, and all I knew for sure was that today he could be at school, his teacher and the moms made a special effort to have the party early to make sure that Eli was able to come. He had such a good time and just loves being around his friends, I mean just loves it. The crazier and wilder the friends, the better for him. It was tough for me to keep it together at times knowing what I was watching, but I got through it this time. They played games, and ate a snack (eeekkkk!!!) and they made gifts for Daddy and Mama’s is next I think. Prayers for a clear and confident choice today. Thank you for sharing Eli.

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