Sigh of relief.

Today we celebrated Shae's birthday. 17 years ago we witnessed a true medical miracle. Contrary to the amniocentisis Shae was born without EB. It was ironic that 17 years later that we would be waiting to hear news from the doctor from Kourtney's pet scan.

The pet scan was on Wednesday. I was expecting it not too go well, but I was happy I was wrong (rarely I am 😄). Kourtney was injected with radioactive sugar. Sugar gravitates towards cancer cells, so under X-ray ta radiologist can see if if the cancer has spread.  Kourtney did so well. She had to be strapped down on her back and lay in a tunnel for 25 minutes as it slowly took pictures of her body. It was difficult for me to watch as I am , claustiphobic. (a result of being Iocked in an outhouse by my brothers when I was younger) Kourtney said she had a panic attack but she covered it well. She started sneezing though which made us giggle because they come in a short staccato like trio.  (If anyone knows me, my sneezes are loud and thunderous.) The scan was wrapped up by 10 and we took the radioactive trooper home.

We were told we would have the results in one to two days. The wait killed us. Many thanks to the Sagerts who came over and entertained our family. We always count it a privelage that Brittany is a relative, a former caregiver and she still likes us. She has the sweetest 3 and 1 year old, there was not a dull moment.  My cousin Leanne and her husband Rick joined the party as well. It made for a great distraction and an overall great time of catching up. That was Thursday and by Friday morning I took the plunge and made a phone call.

I had told the oncologist that Kourtney and I would prefer to hear the results from Dr C. He speaks the EB language and Kourtney has complete trust in him. I called the Office- it was his day off. However his receptionist said " I know he will respond if you email him." Sure enough he responded within seconds of the email. ( seriously we are so so fortunate). The final report was not complete, however he said from what he sees in the preliminary reports he is optimistic that the cancer has not spread. The final report will be reviewed on Thursday before a "Tunour board" ( who knew there was a tumour board) and from there the board will make recommendations for the next step, based on data and studies on squamous cell carcinoma and EB patients.

So now we wait till Thursday. Our Disneyland trip is planned for the 25th. I believe we can go. The radiologist gave us the go ahead to fly and go on rides with a picc line. He said he would FaceTime us to talk us through the removal of it should she develop an infection (once again seriously??  We are so fortunate). I don't think a week will make much of a difference since it's taken almost 4 months to get this far. Who could deny her of one of her few pleasures in life?

So we celebrated not only Shaelyn but a small victory, To make the day even sweeter grandma Charlene's buns arrived in the mail. Once again there are few pleasures Kourtney enjoys so when there is something we will do whatever it takes to get it for her. She loves my moms homemade buns. Store bought ones just don't have the same texture. Everything about EB is texture. My mom and dad put together a box with 5 dozen buns and 3 dozen cinnamon buns. They were shipped by ups and took way longer then expected to arrive. My dad was able to cut a deal with the courier company and will receive a discount or be reimbursed for the poor service. They arrived in perfect condition despite the delay.

This March 9th ends with a sigh of relief but still with so many unanswered questions. Although we didn't experience the big miracle like we did in 2001 we will take the good news and are thankful. We once again have to give it over to God. We are not in control. How we chose to live is what we have control over. Fear has been my enemy for the last few days but now knowing the cancer is contained helps me get through this weekend. Thanks for praying the support.  It has been incredible.