Thursday, October 29, 2009

I can't believe just five days ago I had never even heard the word "Wilms" and now I am on my way to an honorary doctorate in the subject.

I misspoke yesterday when I said Eve had an EKG...she had an echocardiogram. This morning she got an EKG, which proved her heart is working very well.

Dermatologists came in to check on a curious rash that turned out to be something called lichen striatus. It should go away on its own in a year or so. There goes my theory about this strange, linear rash being related to anything that is going on right now. (I guess not everything HAS to be related to cancer.)

Matt and I both had our blood drawn so the genetics team can compare our blood to Eve's (see first update). There was a miscommunication about my birth year and Matt got some funny looks from his phlebotomist as she thought I was born in 1991. I guess cradle robbers freak out people in the pediatric wing.

We spoke with a clinical social worker who put into words some of the feelings we have been having. It's hard to hear, but helpful at the same time. I am not a cryer, but this week has been emotionally exhausting. I don't think I have felt this drained before.

The nurse from supportive care came up to educate us about all the nitty-gritty stuff. We talked about medicines. We talked about fevers. We talked about who to call at 3 a.m. There was a ton of information. She sent Matt to the pharmacy to pick up the seven prescriptions we will need here at home. The bag he came back with looked like it contained a Bojangles tailgate special inside. There are three anti-nausea medications, one baby laxative, one blood pressure medication, one antibiotic (to prevent pneumonia), and a numbing cream to put on her port before it is accessed for chemotherapy.

Eve got her first round of chemo this evening. She did great...stayed still for the most part. One of the medications (Doxorubicin) is red in color, so 30 minutes after the chemo, her diaper was red. Thankfully, we were told to expect this, or else I would have frantically been hitting the nurse call button. We are supposed to wear gloves when we change her from now on since the drugs are secreted in the urine.

The last order of business at the hospital was her H1N1 vaccine. This poor child has been covered head to toe in band aids, but she takes them like a champ!

The nurse removed the needle from the port and we set off for home, only to find I-40 went from 4 lanes to 1. After a seemingly long journey back, Eve ran inside and put on Natalie's ballet tutu and danced around the house. We finally put her down a little while ago in our room and hope that she can make it through the night without too much nausea.

1 down, 5 to go.

Matt and I have been overwhelmed with the support we have been receiving. With flu season underway, this is a particularly hard time to be immuno-compromised. We will miss visiting with people but know that it is in Eve's best interest to be extra-vigilant and keep her healthy while she goes through this treatment.

Thank you for keeping our family in your thoughts. We are so happy to be back home tonight and can't wait to wake up in the morning to be surrounded by all of our children! (It would be nice if they slept in a bit, though.)