Wednesday there was only one square normal hour of the day. The day started and ended with doctor's appointments, and we learned that Amelia has over 50 enlarged lymph nodes all over her body, wherever lymph nodes are. The largest one received an ultrasound thanks to a kind coworker of Aaron's who fit Amy in between patients late in the day. The lymph node is larger than they thought - 2.56 by 2.87 centimeters, which is a little larger than a U.S. quarter. A call from her doctor today was reassuring: although they can't rule out lymphoma or leukemia, it isn't a solid tumor like a thyroid tumor or many other types of cancer that spread through the lymph nodes, and her thyroid looks just fine. Since I had thyroid cancer, that was something they wanted to double check. Her blood work looked about the same. He did confirm that she has the same kidney syndrome that I have, and suggested that we get a lab test at Mayo to double check that diagnosis. I've suspected she had it ever since she was a baby, and just include her in my potassium-rich diet and give her electrolytes every day when I drink them, so knowing this for sure won't have any implications for our lifestyle.
Today was a doctor free day. Whenever fear comes knocking, my reaction is to find ways to savor every minute with my family. I bought a $1 bottle of "real man" (a.k.a. Barbasol) shaving cream for Caleb, and Amy wanted in on the action of "shaving". They used some cake decorating tools and had a blast and both emerged from the bath smelling like little old men.
We put some ribbons in Amy's hair because her hair was so beautiful and curly after her bath. I've been finding that - and yes, I know we don't know yet and I shouldn't even be thinking about it!! - I am just soaking up Amy's hair because it has always been one of my favorite things about her. If she loses it, that will be very hard for me as a mom. So I've been paying more attention to it, doing it every day, and stroking it more than usual when we cuddle. She loves the extra head rubs!
The lab techs sent her home with a bunch of supplies to play doctor (or "doctah" as she says it), so she got busy drawing blood on her siblings when she got home. Here she is "pagin' the doctah for owdows" (orders). She has learned WAY too much in the hospital the last week! She probably knows more medical lingo than most adult patients, between her frequent doctor visits and two nurses for parents.
Another joy we've been reveling in - two beautiful little kittens who are about 5 weeks old now. They are just learning to drink cream from a dish and we had a lot of giggles watching them this morning. They would bob their heads in the dish and then pop them back out because they got a nose full of cream! The skinnier of the two, Seashell (the black and tan one), learned quicker than her sister, Pearl. Caleb scares us a bit because he is such a rough and tumble boy, but he likes to lay on the floor by the kittens and watch them for hours. It's very sweet and at least I don't have to worry that he's going to crush them!
This weekend will be too busy to think much about anything related to Amy's health. I am doing something I only do for someone I really, really love - doing photography for a wedding of a dear friend. I'm actually more excited than usual about it because I'm using my brother's extremely cool antique medium format camera (a Yashika) as well as an old "toy" camera, a Baby Brownie, along with 35 mm film and digital. It will be fun to be shooting in all those formats and I'm sure we'll get some really interested photos because of it. Aaron is my second shooter, and working together with him will be fun. The heat index is supposed to be over 100 degrees and I'm in a black dress, though - whew!
Tuesday we bring Amy to Mayo Clinic in Rochester to a hematology/oncology specialist. There we will finally get some real answers about what is going on with her. Yesterday, we started her on an organic elderberry supplement that is supposed to boost immunity. We also prayed over her, laying on hands and annointing with oil - something I've only ever done when I was diagnosed with cancer myself. We also sent out prayer requests to multiple churches. We may just be hopeful, but both Aaron and I felt like the largest lump on Amy's neck MAY be just a titch smaller and less hard this evening than it has been? If it does start to get smaller, that would indicate that it was some type of infection rather than cancer, which would be a huge answer to our prayers.
Please keep praying for miraculous healing of this little girl!
Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. (James 5:14-15)
I was about to give up and that's no lie
cardinal landed outside my window
threw his head back and sang a song
so beautiful it made me cry
took me back to a childhood tree
full of birds and dreams
from this one place I can't see very far
in this one moment I'm square in the dark
these are the things I will trust in my heart
you can see something else
something else
I don't know what's making me so afraid
tiny cloud over my head
heavy and grey with a hint of dread
I don't like to feel this way
take me back to a window seat
with clouds beneath my feet
from this one place I can't see very far
in this one moment I'm square in the dark
these are the things I will trust in my heart
you can see something else
something else
~from this one place, sara groves~
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