Textbook

Today was a good day. In the last 24 hours the people who have been the most reliable and most consistent  showed up today. We were entertained by cute toddlers, a baby an a standup comedian practicing for her first event, a friend who made us get out of the house to eat at the spag (Spaghetti Factory) and our dear friend and stand-in grandma,  Cheryl.  We were also blessed by emails, flowers from a cute pregnant mama and an oh so sweet lady who sent her cleaning lady over, (cost covered) to clean up our very dusty, cat fur covered home. I even got called on a cancellation list to come in for a massage. It was sweet.

The question that everyone is asking is, "What is next?" To be honest I really didn't want to know or care to know. When Dr. C told Kourtney the news, he said, " Your mom can phone me anytime." Seriously, when does a doctor say that?  I felt that Kourtney had a good handle on the information he provided but my brain had already kicked into high gear I didn't want to over process it. I thought we could go as a family and talk about the plan. Unfortunately, Dr. C wasn't going to be around on Friday or on Kourtney's dressing change on Monday. So his sweet receptionist said, "He would be more than happy to talk to you on the phone." Gah. It's not what I wanted, but I knew I needed to get the conversation over with. 2 minutes later Dr. C called me. He reassured me and made me sick all at the same time. He said although the reports are reassuring and that it's not metastatic, not in the bone and only superficial, the margins were not defined which means it has the potential to spread. He wants to make sure it has not spread to her lungs, liver or brain.

Kourtney's EB has been almost a textbook case.  I say almost because 5 years ago Kourtney made a miraculous recovery.  Improving her nutrition and getting her pain under control gave her the reboot her bone marrow needed.  This  typically doesn't happen with EB.  The pain and chronic open wounds become the catalyst that drives EB families to seek alternate treatment in their teen years. (We had a pretty amazing 5 years to be honest).  However, now we are back on track with the textbook, the cancer starting earlier for Kourtney than most adults with EB. Cancer and EB have been foreseen from the first time we opened a textbook (20 years ago we had no internet access)  This is what makes Dr. C an expert on EB as he looked after 2 adult patients that lived into their fifties. The reason he didn't trust the initial biopsy reports and the reason why he is getting her in for a scan quickly.

There was a cancellation for a pet scan at the cancer agency on Wednesday. Dr. C still had to get all the info in for Kourtney so he wasn't sure if it was given to someone else. I know he will get the job done. Nothing will happen until we receive the results of the pet scan.  That's  when the next decision will be made. Until then we celebrate Kourtney not having pain and me spending time at home with no distractions from work. We know we are covered in prayers and support from friends and family. Right now we ask for peace and sleep and more Sunshine.