1 More Sleep Until Disney

Yesterday  Kourtney, Marijke and I went to children's for one last dressing change. Kourtney only needed a light sedation as her pain has been minimal and basically the site is all healed up. This means that now the torch will be handed back to me. The familiar nurses were sad to see Kourtney go. They loved all the "spectators" that came to see Kourtney's dressing change. I assumed we looked like rednecks coming from the country to the big city. We brought in our coffees.  All we needed was popcorn for the event. However, the nurses loved the company. They did the dressing change without any help from me. They said that usually parents don't come in because they don't have the fortitude to watch a dressing change. It was nice to be a spectator and not have to involve myself unless I was asked. We said our goodbyes, hoping our next time there would only be to visit.

Although it's all over, a whole new chapter of life begins as we look into prosthetics, physio and regular surveillance of her skin for cancer hot spots. As of now we know she is completely free of cancer so we can breathe. We aren't sure what is in store for Kourtney on a personal level. At this point school may be out of the question. We want her to start a vlog (video) of her life and every day accomplishments. I do think it would be a great way of communicating and educating the world on disabilities and EB.

Yesterday after Kourtney's change we took the opportunity to go shopping for last minute Disneyland accessories. It's strange but if I am going to have a panic attack it will be in a mall. Although I hid it well, the worry and fear that came over me caused my heart to race and I had to sit down. I felt worthless, exhausted and defeated. I always seem to talk myself out of it as quickly as it sets in but the cloud lasted longer this time. Although the countdown to Disney is on, Kourtney still needs a blood transfusion. She lost so much blood with her first surgery that her body isn't keeping up with her needs. So now less than 24 hours before we fly Kourtney will receive the gift of life. No stress at all.

The good news is that the suitcases are packed and just awaiting final touches. This Disneyland trip has been a complete act of faith. We didn't put any cancellation insurance on the trip as it was unlikely we would get covered due to Kourtney's surgery. I do think if we had cancelled we would have waited a long time for the surgery with nothing to look forward to.  It would have made Kourtney's recovery much more difficult.

So just to be clear, I am not busting Kourtney out of the country against medical advice. I know I have complete support and trust of the medical team. They have all worked diligently to get Kourtney  ready to go. I have gone through every worst case scenario in my head and this is what makes me worry. Kourtney still has her picc line in. So should she need IV access it will be comforting to know it's there. We have great medical coverage as well so I feel it will be ok.

Kourtney is tough and I believe she will be covered in prayers when we go, right?????

Home.

We came home today to flowers, cards and a very clean house. ( thank you Diella). The love, support and solidarity shown for Kourtney and our family has been amazing. Shae stole my heart as many times she is the forgotten trooper of the bunch. . We are so fortunate to have family and friends that live close thar were available  for her. But what thrilled me most would  be most patents worst nightmare. Shae had a sleepover ( with our permission) , like I said the house was clean when I came home. She even cooked breakfast for her friends ( yes there was 2, and the dishes were cleaned.up) She knew how important it was to me to come home to everything in order. She held it together until we got home, but the tears flowed when she first saw Kourtney. The two girls have worked through their  sibling rivalry and have developed a strong connection. I love that.

So how is Kourtney doing? Her pain has been minimal which is a huge relief after the pain crisis she went through 5 weeks ago. She was able to crack a few jokes about her missing hand today which is alwways a good sign. She has had to restrain me from strssing out about every little thing. But she wants me around, so in my opinion she asks for it. Her and I have an amazing bond and although most of the time we clash I would not ever ever let her go through this  with anyone but me by her side.

As for me the dull ache is gone. November 2017  is when I had to come to terms with taking Kourtney in to see Dr C.  I could not bring myself to make that phone call. My first day back to work after being in Disneyland I could not not shake this feeling of despair I was feeling. My wise friend Marlene started asking the right questions which caused the jailbreak of tears. She held me accountable for making the call to Dr C's office. ( little did she know she would be facing a cancer diagnosis as well- love you Matlene) When I got home the bond Kourtney and I share prevailed, as soon as I returned home. She looked at me and said, " we need to show Dr c my hand". This is how it unfolded, and now that dull ache has disappeared. I hoped it would have been a different outcome but deep down I knew amputation was the only answer.

Secretly I hoped that the tumour board would have had a case study for us to be a part of or would have suggested something different. So about the tumour board......Dr C is a good man however like most surgeons they take pride in the choices they make and the work they do. Dr C likes to pat himself on the back and is not always humble about the work he is done. Which is how a surgeon needs to be. This may come across as arrogance to some people but because we know him and have faith in him we appreciate it. After Kourtney's surgery Dr C said he just met with the tumour board about Kourtney's situation and their recommendation was for Kourtney to have her hand amputated. So he said " I am glad I made the right decision" As my daughter is back in her room post op!! It was humour that only we could appreciate.

But it's over. The cancer is gone, the pungent odour, the pain and the despair it has caused. I could draw parallels to this but I will leave it up to the pastors in my family to do this. We pray and hope that it won't show up for a long time, and Kourtney can start living again.

We will take one day at a time and not live in fear of what the future holds. Nobody knows what tomorrow will bring all we have is today.

Thanks for sharing along in our trial. We know it's the only way we can get through these terrible bleak moments.

 “Praying psalm 30 - (selected verses)
Weeping may last through the night, but joy comes with the morning.

Hear me, Lord, and have mercy on me.  Help me, O Lord.

You have turned my mourning into joyful dancing ... that I might sing your praises to you and not be silent. Oh Lord, my God, I will give you thanks forever!

”

March 15th - lost track of my countdown.

Dr. C, being a man of his word, organized Kourtney's surgery for tomorrow. It has given us little time  to process it. It's a whole new chapter of EB that we have entered. Kourtney is angry. I can't and won't try and reconcile her anger; she needs to be there. She has faced so much loss and this one is unimaginable for her to process.

The only thing that brought a smile to Kourtney's face today was hearing her uncle and aunt from Kelowna are making a special drive out  here to see her. Uncle Wonderful always has something to say and it doesn't matter if we want to hear it. Aunt Charlotte on the other hand asks the right questions and never hesitates to invite herself into Kourtney's dressing changes and nighttime routines. We look forward to them coming. 

By tomorrow it will be over, we will mourn the loss of that tiny hand, but we will celebrate that the cancer will be gone.

We won't be taking no cancer to Disneyland with us.

Do it now.

Today was day 12. I went for a run/walk. The rest of the day was kind of blurry and I just did not have the wherewithal to do anything more. The final report of Kourtney's pet scan came in and Dr. C told us what his thoughts were.  So much to take in; it left Kourtney devestated. Thankfully, Todd was with us today so it made the blow somewhat manageable for me at least.

We had Kourtney's regular post-op dressing change on her right hand. Since the hand is so diseased with cancer the healing the skin doesn't look normal. Together, Kourtney and I decided that until there was a decision about her hand, the best thing was to keep her sedated so she wouldn't have to look at it.  It could also be cleaned well and the dressing change is done in a sterile environment. While Kourtney was out in dreamland Dr. C came in to talk to us. He told us that the final report showed that the cancer has not spread; this was great news but of course there is still cancer in her hand.

What would the next move be? He explained 3 options.  He could perform another surgery similar to the one that ws just done, however, there were so many things that didn't go right and to be honest he said she would never be cancer free. Option 2 was to do nothing, but it would always be a chronic messy cancerous wound with a high likelihood that it would spread.  The third and most reasonable option was amputation. As harsh as it sounds, she would be pain free, the cancer would be 100% removed. Although this sounds like a reasonable solution to us, she took the news hard. No matter how prepared one tries to be nobody can take that blow. She sat there with tears coming down her cheeks.  The decision was hers to make. Finally, after what seemed like an eternity of silence and after weighing the options she simply said, "Do it now."

 I wish I could have recorded the conversation between Dr. C and Kourtney. He made so much sense and his heart was in it.  He will do his best to get it done this week so she can still go to Disneyland. She should feel little or no post op pain, her function should not change significantly as he would amputate below the elbow.

The ride home was silent and the Vancouver traffic was so bad. I just wanted to get home to my safe bed.

Right now I am too tired to make sense of anything. I have nothing profound to say, and at this moment I can't put a positive twist on it.

Tomorrow will be better.

13 Days. Taking Charge

This last month has been emotionally exhausting. Waiting for the phone to ring with news of test results, Kourtney's postop pain. Drs visits, trips into Vancouver and for the first two weeks I tried to keep up with work- I have neglected to take care of myself. Many times I felt panicked that Kourtney would receive a phone call and she would be alone. I have neglected to take time to make meals and exercise. My body aches from lack of movement and my stomach hurts from not eating properly. Todd even banned me from the room last night because I had tummy  problems. He said it was so bad I made the memory foam mattress have amnesia. 😂. I have bags under my eyes as a result and generally feel awful.

I decided I had to take charge today. We are in a holding pattern as far as the next step goes. I am off work and we cancelled our annual Arizona trip. So for the next 13 days I have decided to be active twice a day and do some meal planning.  Day number 13 we leave for Disneyland so that's why it's the unlucky 13 days I have given myself to kickstart my return to health.  As well Todd is on spring break so having him home gives me a partner to bike ride with and help with meals.


I am not in a position to commit to fancy diets, expensive foods and protein powders. I have enough  resources to use, my gym pass, my bike my running shoes, elliptical and of course my fitness pal. The next 13 days I will blog as well keep you up to date  with Kourtney. I am excited to commit to feeling better and overall health. I want to be an inspiration to women at this stage of life that, for those people with children with health problems, and most of all those who suffer from depression. Exercise and healthy eating have been the building blocks that have kept me sane over the years. I need to get back into a routine and make to most of the day.

Day 13. Daylight saving so it was difficult to crawl out of bed. In the afternoon I went for a bike ride and in the evening I spent 45 minutes on the elliptical. Ate well.