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.

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.

Bc cancer agency

Most of you will be reading this early Wednesday morning, we will be on the road already. Kourtney has a pet scan tomorrow. If all goes smooth we should be done by 1000 and hopefully Home before lunch. But I have a feeling that it may not be easy. When I received the call about the appointment I was flat out told they would not use a picc line to put the contrast in.(  I contacted the radiologist that put the line and he gave the clearance to use it.. So I am not sure how that will play out tomorrow. Nothing is ever straightforward with her.

I knew this day was coming but nothing could of prepared me for it. I have been paralyzed by fear, I have kept myself busy with cleaning and organizing, but find myself having to lay down beside Kourtney or sit next to her that is if Lexi our dog isn't beside her. Lexi knows there is something  up. Kourtney  assures me the scans will be fine however both of us know the cancer is still there and it's going to take another couple of surgeries to see it disappear. . And as per the textbook anything short of  a miracle  the cancer will return.  Speaking of miracles it's Shaes birthday on Friday, anyone who knows her story knows miracles can happen. Although it hasn't happened for Kourtney we pray for the cancer will be gone and never come back.

So how do you pray? How do you talk to aGod? How do you live not being paralyzed by fear.? A dear friend of mine just lost her child before Christmas. Her daughter had so many odds stacked up against just like my Kourtney. I asked her how she had to process knowing her child's life was going to  be short but they are suffering? She spoke wise words and said you need to pray for mercy. That made so much sense and I received peace from it.

The one thing I have to keep perspective on is  Kourtney isn't sick. Although there is cancer in her body she still can still go out, move eat and of course go to Disneyland. Our goal is to get there in 3 weeks. If the scans are clear she will have surgery soon, if the scans aren't clear that's a whole  new level of conversation. Praying for clear scans.

I am off to sleep, I have an early morning ahead.

Monday

Today I feel like I have been hit by a truck. Feeling directionless scared and overwhemed. Todd was in the ER twice yesterday with a sore elbow. First time he was diagnosed with tendinitis second time bursitis with possible cellulitis. Todd first started having pain on Friday after an exercise class. We all did the eye roll around here , Shae said he had OLD syndrome. The pain ensued and of course Sunday was the day when he couldn't take it anymore. After one course of IV antibiotics the pain has lessened in severity and he will continue using oral antibiotics.

Kourtney had a good day. Her pain in her right hand is under control except during and after the dressing change. Still waiting for the call for the Pet scan. Praying it will be soon. Today we are headed into Vancouver for a dressing change just on her right hand. Now that we know it's cancer on her hand it explains the pain so it justifies sedation and pain control for the rest of the day., It bothers me the cancer is there. I don't want it in my house. I don't want it preying on my daughter and I don't want it spreading. That's all I have to say.

Today is just a rotten day, most likely because I am so sleep deprived. Today is a day we need to be covered in prayer.

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.

Life on hold

3 months ago we returned from Disneyland. It's always bittersweet coming home from a fun vacation, however, there were more urgent matters to deal with upon our return. As I said in a previous post, I had really backed away from doing the dressing changes but in Disneyland I was more involved.  I was aware that her right hand was looking more broken down but this time I knew something wasn't right. I called in the troops to pray and love on our family. Although I continued on with my regular activities my body stopped functioning properly. I rarely get sick so my body finds other ways to cope;  my internal clock was turned off balance, insomnia ensued as did unusual events which I blamed on menopause symptoms. Emotionally I went into a very dark, black hole.

A week after our return we had an appointment with Dr. C. Todd, understanding the gravity of this situation, took the day off.  We were joined by a support team of Beth and Amber.  When Dr. C saw Kourtney's hand we knew just by the look on his face that there was something sinister brewing in the hand. For those following our journey, the initial biopsy showed it was a benign tumour, however, Dr. C wasn't convinced the results were accurate.  Although we were relieved, Kourtney's pain continued. Pain to this extent in one area is unusual for Kourtney. We knew in our hearts something wasn't right. I was chastised by a friend for taking it to social media, especially when the results were benign. But alas a moms intuition always turns out to be so powerful. I don't regret drawing attention to it so early on in the process. Social media receives so much negative attention, however, in our world it helps us cope so much better knowing that there are many people supporting us.

Kourtney's pain continued and the preparation for surgery began. Never could we imagine that the pain would only get worse.  As you know, the post-op pain from the surgery has been excruciating. We had to come to terms with the fact that there would likely be another operation. I even prepared our family that the only thing that may bring her reprieve was an amputation. Cancer or no cancer.

Last Monday Kourtney went to Children's Hospital for a dressing change.  Since she has had a picc line we have been taking full advantage of it. She is able to be sedated during the change which enables the doctors to take a good look at her hand and give it a good cleaning. She wakes up happy, hungry and ready take on the world. Monday turned out to be a delightful day. We brought our new caregiver in with us and gave her an initiation of sorts. I always feel so fortunate to get to know these young girls. They give our family so much life. It was fun showing her the ropes at Children's Hospital. Kourtney's anesthesiologist was the dreamy Dr. Cassidy, who wiped away drool out of Kourtney's hair while while he  put her into a medically induced sleep. He made us a laugh with an embarrassing story of his own to follow. We were told Dr. C had the results so we waited an hour for him.  It turned out that the results weren't in, but to be honest we were just happy to see him.  We know his heart is with Kourtney.  We then waited out traffic and went out for dinner with one of our most loyal caregivers, Meaghan. There are not many people that Kourtney feels comfortable around,  but when she does she can make everyone giggle. So many blessings came from that day.  I believe it was a way of preparing for the news.

I was at work. Kourtney received the call from Dr. C. Not good news at all. The cancer had come back aggressively.  The next step will be making sure it has not spread to other parts of her body and of course another surgery to remove more of the cancer or possible amputation of the hand.  Dr. C needs to consult with his colleagues as ultimately he wants to save the hand. At this point though it's not the cancer that worries me as much as going through the pain cycle again post-op. Kourtney maxed out her pain meds and has built up a tolerance so this most likely means a lengthy hospital stay. We are now bracing for the long journey. I have taken time off work.

There are so many unknowns at this point and I will continue to update the blog.
So how can you help?  The only thing we want are visitors, especially if they involve squishy babies and toddlers (we welcome everyone). Preferably with a cup of coffee and a London fog
croissant for Kourtney. You also would have to put up with two cats and a very needy dog. I also would love to learn to macrame, knit or crochet. If anyone wants to learn or has expertise in these areas let me know. Although we anticipate many Vancouver trips we will be home as well.

Although the results were not easy to hear, the amount of pain she was having was obviously a sign that things weren't right. I can't say I am relieved but I also know that once the cancer is removed things will start improving.Once again I am thankful for DR C, that he is the one in charge on earth and I completely trust him. We feel blessed to gave a great circle of friends who have embraced us.
 I will continue to update the blog.