Anna had her weekly appointment today. Thankful that, the weight she had lost last week was back, though she still needs about another ten pounds. Her new medicine wasn't in yet, so we have to wait a little longer to switch over. We are working with Dr. Irwin to regulate Anna's daily schedule so as to help her regulate her pain and sleep, as well as caloric intake.
We had asked about a more specific look at dates for the transplant and got a very interesting answer. Dr. Irwin has never before had this type of response before, but most bone marrow transplants are done immediately as most leukemia patients have acute leukemia which is fast moving, unlike chronic myelogenous leukemia, which starts out slow moving. The doctor at Seattle Cancer Care Alliance said to tell us to go ahead and pick the date! He said May, June, July, whatever we want, their schedule is open! So please pray for us to have wisdom in this decision making! Also, if Anna's new meds don't help her quality of daily living, the transplant will be moved up. Five to six months can be a very long time when you are in so much pain and can hardly walk or stand for very long. I am thankful for Anna's sweet smile and the courage she has to face each new day!
We are currently doing all we can to enjoy each and every day! I feel a bit selfish right now as I want as much family time as possible before her transplant. This might sound like a strange prayer request.....but please pray it snows on Christmas! I think it would make the day extra special to wake up to a winter wonderland!!! To be snuggled by the fire together, drinking hot cocoa (or coffee depending on which family member) and enjoying time together reading the true Christmas story and opening our gifts...all would make for the perfect day.
Anna gets a two week "vacation" from going to doctor's appointments. What will we do? We're going to Disney Land! Haha, just kidding! It's actually kind of funny, but the more you see of someone, the more "like family" they become! (So, we might actually MISS the staff at Dr. I's office!) I really can't say what all we will do at this point, but it doesn't matter. We will enjoy being just us.
All in all, I can say that, while it is very hard to see my little girl's health decline, God is good! He blesses us daily! We have much to be thankful for. Each day is a gift, one that we want to use well. We are learning that we MUST redeem our time. We don't know what tomorrow will bring. We can rest in the knowledge that Anna's life (as with all of our lives) is in His hands. God is sovereign and is guiding us down the path He has chosen for us. I don't need to worry about tomorrow. Yes, I do get sad at times and that's okay. But I have the joy of the Lord as my strength! This illness has been a reminder that I need to hug each of my babies tight every day. I need to make every little moment into a big moment, cherishing my children, instilling God's love in them, nurturing them in the admonition of the Lord.
They need to see us as the Mommy and Daddy, and the big sister or big brother, allowing God to work in our lives. We need to point out God's goodness to them in everything. For He is good, and His mercy endureth forever!
Make the most of your todays......give God the glory for every moment He has gifted you with. May the Lord of the universe bless you all!!!
