So far 2016 has not eased up on our family. In January, Todd went to the Dr’s to have a minor procedure done to remove a stent left over from his kidney stone surgery in December. It could not be found because the slinky-like tube recoiled up towards his kidney. The only way it could be removed was through surgery. So once again Todd had to be put under to remove the stent.  Although it was a very quick procedure Todd does not do well with anesthetic. All in all, it was a relief that the kidney stones and the pain that came with it was completely gone.

Spring break was a huge milestone for our family. We went on our annual family vacation to Arizona without Kourtney. Now that Kourtney is in college she doesn’t have the same spring break as Todd and Shae so we made plans to leave Kourtney at home. She showed a lot of independence by booking caregivers and making her own plans during our time away. Although things didn’t quite go as planned we were very thankful for grandparents in Regina that dropped everything to come and spend time with Kourtney.  Little did we know that we needed them more than she did when we came home.

Our time in Arizona was relaxing. We hiked, shopped, swam, spent a lot of quality time with our family (Natalie and Kourtney) and enjoyed the unseasonably warm weather. The 2^nd last night we were there Shaelyn started complaining of a very sore stomach. Todd and I went out at 3am and bought medication to help with the pain but it didn’t let up. She begged us to take her to the hospital.  In all of our visits to the USA this was the first hospital visit ever (go figure). Shae does not complain of pain so we knew she was serious. After spending 6 hours in pain at the hospital the doctor refused to “image, scan or x-ray her” because he was sure she didn’t have appendicitis. He thought it was the stomach flu. She got some IV morphine that settled her but unfortunately that night the pain returned. We were leaving the next afternoon so instead of changing flights, car rentals, hotels etc. I drugged Shaelyn up with Todd’s kidney stone medication and boarded the plane. It was a long trip home for the poor girl. Thankfully Shaelyn’s friend, Emma, (who came with us) kept her in good spirits on the way home. Two hours after arriving home I took Shae to emergency in Abbotsford and waited another 6 hours only to hear the same words echoed, “its not appendicitis.”  Fortunately the Dr. was concerned about her pain and ordered an ultrasound for the next morning. After another dose of morphine Shae settled for the night.  The ultrasound confirmed appendicitis and Shae’s blood was showing more signs of infection. The surgeon did not waste anytime in booking an OR and Shae had her appendix removed. When she woke up after surgery she instantly felt better. Fortunately it was angry but had not ruptured! She recovered well and we became very aware that Shae has a very high pain tolerance after having 4 blood draws and 3 IV’s.

Easter we celebrated with my parents as well as Todd’s family. We thought we were could breathe again. We did not anticipate any foreseeable issues until a week later. Kourtney had a “routine” appointment to see Dr. Courtemanche.  Kourtney’s last skin biopsy was in February and we hadn’t heard the results. We thought  “no news was good news”.  Nothing prepared me for the next news. “Frank” (the cancerous growth on Kourtney’s hand) was now considered a “tumour” and was A LOT more aggressive then the first reports we had. I was not at the appointment so the details are sketchy but Kourtney was told surgery needed to be booked immediately and she would have to make a decision if she wanted to have extensive skin grafts done to her hand or have it  “amputated”. The news was so unexpected, nothing could prepare us for this.

But once again God’s sovereign plan came into play this week. I was really tormented by this news, as mentioned I did not go to the appointment so I did not know all the reasons behind this decision. My mind was flooded with ideas. I wanted to go see Dr. Courtemanche on my own but because he knows Kourtney and EB I decided I needed to trust him. Which is very difficult and almost unheard of in our overtaxed medical system.

 Kourtney   took matter into her own hands, and  made an appointment with our family Dr on her own.  They both came to a decision to do the skin grafts. It was one of the most freeing experience not having to make the calls for her.

The last 3 weeks we heard nothing.  Kourtney phoned the office but there was still no plan. It was very difficult to be still and wait, so I got busy around the house and did the biggest spring clean ever.  I tied up all the loose ends. (Then the dog started peeing blood, found out she has stones in her bladder, she will will be having surgery on Monday). So life continued on although there were anxiety attacks and fears had to be covered in prayer. My mind rested though in the fact that Dr. C was in charge.

Life continued on for Kourtney. She wrote her final exam on Thursday and on Friday she got the call that she will have surgery at Children’s on Wednesday. (isn’t God’s timing perfect as always).

 So far Kourtney has been a “textbook” for EB complications. However, the last 3.5 years thanks to an amazing group of local doctors and a miracle, Kourtney’s skin, her pain control and her quality of life  has exceeded expectations for this type of EB. Now we enter a whole new stage of EB. We are thankful for Dr. Courtemanche who has looked after two adult patients into their 50’s, managing their wounds and their cancer.  I want to chose to think positively and prayerfully. I have chosen not to research this or look at the stats. I don’t know what comes next as far as investigations of the cancer will go. All I know is that we will take this one minute, one hour, one day at a time. As well we have a very amazing team of ladies working with Kourtney this summer.  So thankful for the way God provides every need for our family.

So Monday is surgery for the dog and surgery for Kourtney on Wednesday April 27^th.  It will be the 4^th Kujawa surgery in 2016 and the year isn’t even half over yet. (yikes).

I will keep you all updated. Please send your love, prayers and thoughts to us this week.