We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Wednesday, December 13, 2006

The Long Day is Over...

Today was not so bad, but things were always in a kind of precarious balance with Ellie. She slept quite a bit, but in between she had a lot of stomach pain and some nausea. When we timed the food and drink just right - the right things at the right time - she would perk up and do better for a while, but then kind of crash again. I was able to get a nap in the evening (as I didn't sleep much last night) and then when John and Kathy (John's aunt who is a Nurse Practitioner...for the time being our OWN PERSONAL Nurse Practitioner!) came over I went to the Ronald McDonald house to get a bath. Stan and Pat came over for a visit after being out for Pat's birthday (happy birthday, my sweet mother-in-law!). Ellie gave gifts to her "Bubbie" that she had picked out herself from the gift shop downstairs (and wrapped herself). While I was away, Ellie threw up for the first time this chemo. Looking back, I can see that she could feel it coming on all day...she has such great intuition about her own body. She got some medication to help with the nausea, and was able to eat a little bit more after throwing up, and now she's sleeping quite peacefully. Kathy will be in the room for a couple of hours this evening, so John and I will be able to get a chunk of uniterrupted sleep. (We can both sleep through anything, but I will wake up if the kids need me...so having Kathy in the room will allow me to get a chunk of deep sleep.)

Tonight, my prayer again is that God would protect me from the worry about tomorrow. I talked with the parents of a little boy here who also has neuroblastoma, and started chemo just before Ellie. He is now a whole cycle ahead (because Ellie lost time with the chickenpox), so we are able to learn alot from his experiences. Apparently, cycle three (the one Ellie is on) was extremely hard on Carson. He threw up every day for at least 10 days AFTER chemo and lost 5 pounds. I find that there is such a balance between being prepared for what is to come, and worrying about all of the details. It is very nice to have a head's up about what could be on the horizon, because when it comes like a two-by-four to the back of the head, there's always some recovery time while you collect yourself and get over the shock of the ordeal. Knowing the worst case scenario allows for preparation and the ability to meet things head on with expectation. That's all well and good... but it's when I take it to the next level and worry about the days on end of intense nausea and weight loss that I realize that I have just stepped out of the place where I should be...living in the grace that is mine for this moment. I continually see God allowing me to look into the possibilities that tommorow may bring so that I can be prepared, but then bringing me back to live in the grace for today. God is so good to me - He's never harsh with me, always the tender shepherd who gently leads those who have young - he just quietly reminds me to be still and know that He is God...that His grace really IS sufficient for today...and that His grace will be there tomorrow - and He does it over and over again. I wish that I was that patient with my children...

It is late, and for now I must sleep. I hope you all have a good night (or day for those of you around the world!). Thank you for your love and prayers...we will sleep peacefully tonight because of them.


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