Today, we find ourselves in a holding pattern.
It's not that I dislike holding patterns, their pretty benign, but I am anxious get going on this testing. The sooner we start, the sooner 8 weeks will be here. The sooner we can discover what the future has in store for us.
I have spoken to our Oncologist here in town and he is just waiting for a couple more things from Seattle before we can proceed. He told me that Shelbie would also be involved in the testing which came as yet another surprise. I'm not sure what that means really since she definitely said Shelbie did not have the gene for the new disease. Who am I to argue.
Another holding pattern we have experienced today is getting Sam's bone marrow report back, at least the preliminary look that measures the % of functioning cells. He is pretty much in a holding pattern in what they call the cellularity, as he was 6 months ago so 20% give or take a white cell or two!
When I stop and consider what 20% really means...my kids are doing miraculous. One would have to imagine that a bone marrow functioning so low, would mean countless infections. So far, we have been able to avoid the big ones that come up in the winter.
We've been given many blessings and breaks over the past couple of days. This evening, we had two very special visits. One from our very dear friend who use to be our Bishop. He had been prompted to come over and share a special song with us. It was very nice and set the tone for an evening filled with peace.
Santa came by for a visit as well! I love Santa. Santa has seen us through some pretty tough years over the past 16 years! I was trying to figure out how I connected with him and I can't remember. It seems like he has always been here, always part of the family.
Today has not felt as raw as Thursday, Friday, Saturday and Sunday. Today feels more numb and foggy. I guess that's okay. I haven't thought about our situation too much which is good.
When the kids were first diagnosed, I tried really hard to appear strong. To be the rock that I was expected to be. I feel like this is a do-over and I now I am going to be honest instead of strong. I know that I will have my strong days but I'm going to allow myself to be weak and vulnerable too! That's a bit scary. I feel bad that I am not happier about this news. There are so many other parents who would give anything to be in my shoes. They would be happy, they are ready to hear the name. That makes me feel undeserving of the fact that our doctor was working so hard just on our family!! So much time, so many resources.
One thing I always love to see, is how God's timing and purposes begin to unfold and I can see the pieces and purposes start coming together. Therein lies pure Holiness and Reverence for a God that is filled with mercy.
Our focus for this week is trying to sleep. I don't sleep well on a good night because of the arthritis pain I have to deal with, but this chaos is compounding to make sleep nearly impossible. I get about two hours and then I'm wide awake, my mind chasing possibilities.
Tomorrow, Shelbie has her follow up with the Orthopedic surgeon to see if he can fix her knees. Wednesday, IVIG and another marathon day at the hospital, Thursday, I have kept open for Sam's testing. So, no rest for the wicked this week!