The Ramp

         “Poetic justice” are the words I would describe the events of this last weekend. This particular week had the potential to break me, but instead I had to console myself that A- my life is not normal, B- I am doing well despite how I see myself and C- I love shopping. (OK, I already knew about the shopping but it is a coping mechanism that I have perfected over the years.

         The month of October is EB awareness month. For those who take time to read this, my hope in writing is that even through the worst circumstances we are able to see humour and find joy through our trials.

         Kourtney has had an electric wheelchair since kindergarten. Because I am such a big bad mama bear I have always insisted that Kourtney walk as much as possible. She was only allowed to use her chair for long distances and to get around the school. I never wanted a ramp for our van nor did I ever want to make our home accessible; no wide doors and no stair lifts. The reason I did this was for her to keep some walking muscle memory.  It also allows her to go places that aren’t wheelchair accessible like my parents home of her Uncle Wonderful’s.  Of course the number one reason is so she can transfer onto the rides at Disneyland!

         Over the years though, Kourtney has become increasingly dependant on a wheelchair when going out places so we purchased a manual fold-up wheelchair. Having this gave her the ability to go out with friends in their own cars. With Todd and I both working we would have needed a 3rd vehicle to get Kourtney around.

Although an accessible van is ideal, they are expensive, and puts limits on the number of passengers can fit in the van. This makes it difficult to bring caregivers on family trips and outings. Bringing a caregiver has been our way of life for years now. Not only is the help necessary, it also provides companionship for Kourtney. Over the last few years Kourtney has been requesting a ramp for our van or a new van that is accessible.

         Kourtney presented an insightful case for a wheelchair accessible van. She says that people stare at her more and are more likely to  talk to the people pushing the chair instead of her. Over the past few years she has developed a social anxiety. She doesn’t like to go to places like church or gatherings as she feels she is stared at and ignored. The Handi-dart is unpredictable and taxis are so expensive and unpredictable.  This evidence was enough for Todd and I to look into options for her.

         The best and cheapest way for us to get her electric wheel chair into the van was to buy a 5 foot long metal ramp. It is clumsy and somewhat cumbersome, but for now it works. The electric wheelchair alone takes up a lot of space and the 5 foot long ramp has to fit in the van as well. This means that our 7 passenger van becomes a 4 passenger vehicle. Which brings us to last weekend.

         For the past 15 Thanksgiving long weekends (missing only about 3 years) my family has met in Sylvan Lake, Alberta for a family reunion. Sylvan Lake is a 1100 km drive through the Rocky Mountains from Abbotsford. Over the past 7 years we have taken a caregiver with us. As Kourtney has gotten older she has grown apart from the Saskatchewan group of relatives and was undecided whether she wanted to go. As we have learned to do, we gave Kourtney the option to stay home. After some thought she reluctantly obliged to go and but negotiated that she take her electric wheelchair. This meant we couldn’t take a caregiver with us. This did not sit well with me. With our increase in funding it is rare for me to do a dressing change, mix her medication for the day or even get her up in the morning. For those who know, Kourtney and I have such similar personalities that we usually end up in some kind of disagreement while I am doing her care. My one consolation was that Todd would be there to help out as well. It’s so much easier when we are able to tag team her care. I do not take Todd’s willingness to help for granted. Not many men would be so willing to be a part of the care of their 21 year old daughter.

       A week before our road trip Todd fell off his bike and “did something” to his upper thigh. His pain was intense and he couldn’t put weight on it so we had to call an ambulance to take him to the hospital. X-rays ruled out a broken femur but the pain continued. Todd managed to work and asked the family doctor if he was fit to go on the trip. The doctor reluctantly gave him the go ahead. This prompted a serious one to one talk with Todd and I. I did not want to be Kourtney’s caregiver and his as well. I gave him the option to stay home with Kourtney. By then though, Kourtney’s mind was made up that she was going. This put some added pressure on Todd to go but I also made it clear that I didn’t need two patients. Famous last words.

         Todd drove all the way to Sylvan Lake. Although we broke the trip up into two days, his leg pain intensified. To be honest I found it hard not to do the old eye roll when he was waking me up at night because he was in pain. Lack of sleep is my biggest catalyst for a decline in my mental health. I stayed accountable to my sister Sharon to not allow resentment to take over my compassion. To help me keep perspective this is the man who once stayed over night on a mountain with a broken ankle, walked around for a weekend with a broken fibula, endured kidney stones and corneal infections. Some of the worst pain known to man (other than childbirth and EB).

         Todd still managed to help out with Kourtney, which I was so thankful for. But we knew the 11.5 drive home would have killed him. So we made plans to fly him home on Sunday. This meant that I would have to do all the driving home. With snow in the forecast I was uneasy about driving through the mountains. I felt overwhelmed. The one thing I knew though is that when I need the girls to support me they step it up. Both of them knew how uneasy I was and I started the trip out tired. 

        

         You see, the night before I had to make a 3 hour return trip to Calgary to drop Todd off at the airport.  Todd’s pain was so extreme that he had to use a wheelchair to get around the airport. When he arrived in Abbotsford he called for an ambulance to pick him up as transferring into a vehicle was too much. So, I drove to Calgary and back, had to pack and get Kourtney ready that night. My sleep was troublesome as I envisioned Todd throwing a blood clot or losing circulation to his leg. I kept my phone close by and waited to hear from him. Although nothing sinister happened as I imagined, there were still no answers.  They sent him home after more X-rays and an ultrasound booked for the next day. This frustrated me more as I lay in bed, wide awake.

         After a short sleep I woke up to a fresh layer of snow. Thanks to my brother and brother-in-law they helped me pack our van. Shaelyn and I managed to get the wheelchair in, but I knew that getting it out was going to be tough as we had piled our luggage and bags on top of the ramp. The tears flowed as I anticpated the long drive ahead. I was able to console myself that we could spend the night in Revelstoke or Kamloops if it became too much. But once I got behind the wheel I went into stealth driving mode.

         I love having a GPS on while I drive. I love seeing the km’s go down and try to beat the suggested arrival time. As we drove through sleet and snow, dry roads and wet roads, our destination to Revelstoke was approaching. After 6 hours of driving we needed a pit stop. Kourtney slept for most of that 6 hours and like clockwork, 5 min from Revelstoke she said she had to poop. This was an unusual request as Kourtney rarely needs to even pee on a road trip, never mind #2. But remember the electric wheelchair and ramp?  How the heck would I get it out? I had visions of Shae and standing with Kourtney on the side of the road helping her pee. The best solution was for Kourtney to make a run for it (no pun intended).  As my mind was formulating the exit plan I concluded that Tim Horton’s bathrooms on a holiday = line ups. My best option was the Denny’s. I made Shae go in first to get us a seat. What occurred next was a well-deserved reward for big bad mama bear who made her daughter walk. I helped Kourtney out of the van and said, “RUN!”  Run she did. The bathrooms weren’t close to the entrance but adrenaline took over. She just made it. As Kourtney was serving up her own Grand Slam I was trying to get my land legs back. It turned out I had to do the deed as well. Like all moms we put our needs on the back burner, I had to hold it all in as  I had to find a place to sit Kourtney down. Shae was patiently waiting for us and when it was her turn  she  made sure she didn't  use the stalls we did.

         None of us felt hungry but we also knew that a dump and dash was not a good way to thank Denny’s   for their patronage. We started to giggle and totally enjoyed our time together. The best part was that I forgot about the hour gain from Alberta to BC. That was enough to give me a second wind to push it through to Abbotsford. In 5 more hours we made it home. I usually unpack as soon as I get home but I went straight to bed. Requested that no one talk to me and no one including the animals sleep with me.  Most of my night was spent waking up in fear that I had fallen asleep at the wheel but it sure felt great to have a good rest.

         The rest of the week has been spent going with Todd to doctor’s appointments. Still no answers except that he could rule out fractures of the upper and lower leg, tendon tears, blood clots or compartment syndrome. The pain is getting better but ever so slowly. He’s on and off crutches and looking forward to getting back to work and biking!

         The girls and I giggle about our trip and are so thankful we stayed safe and no accidents inside the van. I will always remember this trip as it was a confirming moment that pushing Kourtney to walk has been a good thing. We did manage to do a lot of shopping and time with our family was very special.

Happy fall y’all.

No signs of cancer since July! We are so excited we are going to Disneyland in November!!!

Phonenix

In less than 24 hours Todd, Kourtney and I will be boarding an airplane to Phoenix for a DEBRA (dystrophic epidermolysis bullosa research association) of America conference. Yes, it will be hot and no, Kourtney can’t handle the heat. However, since it is an EB conference, the planners take the heat intolerance into consideration.  All events will take place in a conference centre; no outdoor activities and a full 3 days of speakers, food and entertainment. Summers in Arizona are a lot like a prairie winter. These places are designed to hold conferences inside. We are thankful for the opportunity as DEBRA Canada has sponsored us to go. 

However, our hearts are heavy.  That's why I am reaching out to anyone reading the blog.  WE need lots of prayer coverage as we just got the results that Kourtney's amputated arm has cancer again.  Just when we had reached the new normal we were aghast to see the familiar signs. It broke my heart as  Kourtney had known about it for a while before she showed it to me. She knows that when she tells me it will make it real and then we have to face what lies ahead.We were so discouraged. We had so many hopes for a summer free of Doctors appointments and gruelling waits for pathology results.  We had also hoped to avoid the incredible fear of seeing Kourtney suffer.  We had so many plans and though we are still going through with them, there is a cloud over our heads that has reappeared.

As always Dr. C’s office is so accommodating. I called Monday and they had an appointment for Kourtney on Wednesday, my birthday. Over the past few years I  plan the day of my birthday. This way I have no expectations and it takes the pressure off of my family.  My plan includes my family, spa appointments and being with friends. This year was no exception, but those plans were put on hold because family always comes first (I have to be careful here because Kourtney feels bad that this appointment took place on my birthday) Kourtney and I face things together and in complete honesty 

being there for Kourtney was a birthday well spent.  I believe that I was born to be a mama bear, a caretaker and to champion people no matter what they are facing.  That’s who I am. (by the way I did have a "me day" after) The icing on the cake was Kourtney asking for the birthday girl to hold her hand when Dr. C decided to remove the growth in his office.

I am beginning to read Dr. C's facial expressions and so far all of the them have been accurate. This time there wasn’t worry on his face.  More of an "aha ".  When he amputated  her hand he cut the margins close. So he called this a  “local" reoccurrence. We did not have to wait for the pathology reports; he knew it was cancer, but the pathology reports would determine the next move. Yesterday we got the results. At this point he cleared the margins but barely so we watch and wait. 

We always leave his office feeling like a load is lifted. He knows so much and has seen it all before. Although we were all too tired to do anything after, my heart was full as the people I love the most were with me. Todd, Shae and Marijke. So thankful for these wonderful people.

As we go to this conference we are praying that Kourtney finds Hope, companionship and a renewed courage to keep going. We don’t want this recent diagnosis to overshadow the good that can come out of this conference.There will be opportunities for Kourtney to interact with other adults with EB  and gather information on the newest treatments for her type of cancer. Todd and I are looking forward to being with Kourtney and hopefully encourage and give HOPE to other children and their families.

Shaelyn made the decision not to come with us (just in case you were wondering). She will be busy with VBS in Mission and looking after the pets. We completely trust her and know she will be ok here. This gives Todd and I the rare opportunity to have 1:1 time with Kourtney. We will give you updates as the conference proceeds.

Ellie

With Kourtneys amputation behind us, the Kujawa’s have reached a new normal again. This seems to occur when Kourtney's feisty spirit returns, and well . . . she is back. Our household has more joy, more laughter and more peace than it ever has. We have learned to appreciate each other more and won’t take each breath we breathe for granted.

This has resonated with me especially in the last month as two of my coworkers have passed away. Two totally different disease processes but both so aggressive and unpredictable. Both of them have left big empty spaces for their spouses and family. As coworkers it has been difficult to process. Work continues, people still have babies and they need nurses to deliver them. But the hallways aren’t the same because we won’t see these two ladies walk them anymore.
Part of processing my grief is to pay tribute to both of these ladies. For Marnie I was able to make a video of her work friends and capture her personality that way.  Ellie, on the other hand, has been more difficult.  I don’t have many pictures of her as she didn’t socialize beyond work. Like most of us 40 plus moms we have been in the thick of raising children.  So the best way I thought I could pay tribute was to write something about her.

My first recollection of Ellie was asking her about her signature she signed it as "P. Cranfield."  She told me the P was for Petranella. I was impressed by her matter of factness. (I grew up with a middle name that I got made fun of and was generally ashamed of my name. But that was Ellie;  matter of fact.

To be honest ,Ellie was not my most favourite person in the beginning. There was no rhyme or reason. Ellie was not out to impress anyone, her black was black and white was white. She worked part time and I was full time. 10 years ago we both had young children and came to work tired and overwhelmed. It wasn’t until we became Facebook friends that I started appreciating her more.

Ellie took out her frustrations on Facebook. But despite her rants, she was one of my most diligent followers of our journey with Kourtney. I could always count on Ellie responding with “I am praying“, sending love or acknowledging my frustration with the system. Our friendship continued to grow but the bond grew more when her eldest daughter started getting sick and was later diagnosed with Lupus.

During that time Ellie began to work full time, that’s when I truly started appreciating Ellie. Ellie was an experienced maternity nurse.  She never complained about her assignment, nor did she ever try to be anything more then she could be. Although I couldn't always follow her charting, one thing about Ellie, she cared for her patients. Ellie received more individual gifts from patients than anyone on our unit.

In this last year her oldest daughter spent months in the hospital. Ellie became her best advocate and dealt with her frustrations on Facebook. She didn’t come to work as a victim.  Her situation made her strive to be a great nurse and one of the most compassionate people I know. I feel so fortunate that this is the Ellie I remember, and have shed many tears over.

As Ellie’s life has gone, not only was her daughter sick, her husband became ill and Ellie was having unusual stomach pains. The stomach pains turned into a hysterectomy and eventually a diagnosis of ovarian cancer.  From what I understood from Dr. Google, the prognosis was poor. However, this was not the diagnosis Ellie was told. The tumour was contained and the doctors and oncologists felt they got it all before it spread. Chemo was only precautionary to kill off the cancer cells. 3 months of chemo and the plan was for Ellie to come back to work in October. As a group of nurses we wanted to help.

During this time I was going through all our problems with Kourtney, but I felt I needed to help Ellie. I started collecting money and was so happy to provide the family with many meals. Ellie and the rest of the family were so appreciative. I stayed in contact with Ellie and was planning on providing the family with more meals for her next round of chemo. But in a sudden twist of events this was not to be.

Exactly one week after Ellie and I communicated I got a frantic phone call from a coworker. Ellie’s cancer had metastasized to her brain. She was admitted in our hospital and had only days to live. 3 of us nurses went down to see her.  We were so confused when we saw Ellie. She was herself, chatty and as her usual self complaining about her watch being on the wrong hand, correcting her husbands pronunciation of medical terms and proud that she still had the wifi password. She mentioned she was planning to come back to work. We all thought that I received the wrong news.

As I was talking to Ellie her husband motioned to me that things were not as it seemed. Through text message I learned that Ellie was not aware of her prognosis. She was clinging on to hope that radiation could kill off the cancer cells. No one actually could confirm how much time she had left so her husband wanted to keep it positive and give Ellie hope.

On Saturday Ellie received so many visits from coworker as the news spread of her admission. Her husband texted me and said the doctor came in and said she had days left. My coworkers still continued to question me as Ellie continued to be herself, still blissfully unaware of her prognosis. That night things changed.

As the inter cranial pressure increased in her brain Ellie had a violent night of projectile vomiting. Sunday morning I got a text from her husband, Ron, that she had become unresponsive. I left my duties at church to get up to the hospital. Although Ron’s request was for family only, I had brought some food and my faithful coworkers made a giant card for Ellie. Ron graciously allowed myself and two other coworkers to come in and say goodbye. I will never forget hearing her children weeping for her, just wanting to hear her voice one more time. It was not to be.
Ellie passed away 30 minutes later, peacefully, with her family at her side. 

Although seeing her family so sad and upset will replay in my memory for a long time, I am grateful I got to see her. I am thankful I got to know the real Ellie rather then just the Facebook Ellie. I will miss her Facebook posts, our private messages but most of all I will miss seeing her at work. She left far too soon at the pinnacle of her career, and as a wife and mom. I miss you Ellie and you will remain in our hearts and minds forever!!

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.

MRP

As of today the biopsy results aren't back. The emotions are running high as this surgery has thrown us a huge curveball with the amount of pain Kourtney has been having. It came to a point last week when we had to start wrapping our heads around the idea that there may have to be another operation if this bewildering pain continued. Although the preliminary results of the biopsy showed no cancer, Dr. C. was still not convinced.  The results will determine the next phase. So many things are running through my brain. Finally, on Sunday our family doctor returned from vacation and took charge of the situation and became the MRP (Most Responsible Person - a medical term used in the hospital when a patient is admitted in hospital - usually a doctor who orders medications, procedures and consults.

It may seem like I am over involved; a micromanager or enabler. To be honest since we have had our funding increased I have done my best to back off. I haven't done a dressing change in months!  According to Kourtney I am not fast enough. Kourtney also doesn't like it when I get her dressed.  She often tells me, "How do you dress yourself when you can't dress me?"  To be honest it doesn't bother me. I am happy to back off. I think it's healthy and an important transition to being an adult. However, these last few months of arranging, organizing doctors, and figuring out the right pain meds it may not seem like I have backed off. Just to be clear I don't need to be needed. 

Last week we adjusted Kourtney's meds and did a dressing change with sedation.  I thought the pain was under control. I decided to work on Friday and my 12 hour shift went on swimmingly, without any word from Kourtney about her pain. I felt relieved. It turned out not all was well. Kourtney's pain wasn't settling AND I was told that Kourtney's pain medication was running low. So why was I just finding about this now? Friday night. When doctors aren't on call and turn off their pagers and cell phones for the weekend. (This medication can not be called in by a doctor. The physician has to hand write it out on a triplicate form, can't be faxed etc). After a gentle tongue lashing to her MRP of the day, Todd,  I could not dwell on it but moved to Plan B.

After several attempts at contacting doctors, I banked on the fact that Dr. C., being a workaholic, would still have his pager on.  Of course he was happy to help, however, it meant "TODD" had to drive all the way to Vancouver to pick up a prescription. Once again it just seemed so unfair.  That same day  I received a "kick to the stomach" that I didn't see coming. I can't and won't expand on the details however I have had to give it over to God. A difficult task as I have been wounded deeply. Although Todd dropped the ball the day before his redeeming qualities overshadowed a very minor situation. He has the ability to give me perspective, keep me grounded and loves me and our family unconditionally.  Despite our best efforts Kouryney's  pain continued.

By Sunday afternoon Kourtney was adamant she needed to go to the hospital to get some IV pain medication. I was in full agreement as I felt I was in over my head we were giving an insane amount of medication with no benefit. I felt helpless. In a last ditch effort I tried to get a hold of our family doctor on a Sunday afternoon. I don't take for granted that these doctors are so willing to help. But taking Kourtney into the hospital brings another set of problems. Doctors who don't know Kourtney's history have a difficult time wrapping their heads around EB nevertheless her 20 years of having it. Kourtneys  doctors don't want her admitted for because she is so complex. The long and the short was DR K became her MRP.  He acknowledged that this had been an erroneous weight on my shoulders and he would take over. He changed a bit of this and added a little it of that, called Dr C and voila the pain went away in an hour. No word of a lie. One little pill a strong antinflammatory changed her pain instantly.  It's been 48 hours and Kourtney is back to herself.

Now we wait......for the results. Thankfully Kourtney can leave the house and be more distracted.

So so thankful for the medical people in Kourtney's life. It certainly takes the pressure off not being her MRP but just her MOM.

Snowed and Snow

The last 5 days Kourtney has been dealing with excruciating post-op pain. She took so much pain medication that it would snow a 400 pound man, but it didn't touch her pain.  The simple fix would have been to get her admitted with a IV pain pump running. However, it would have meant having to endure the dreaded ER and exposure to germs that could complicate her already complicated situation. Between myself and 2 of Kourtney's doctors we had a plan. One can be brave for so long and of course it all happens1hour before I have to leave for work.

For the last two days I had questioned if I should work on Tuesday night.  Kourt had been taking one medication that worked well but had some serious side effects. Once again we had to weigh the odds and decide what was the best for Kourtney. We cut back on the "too good to be true" pain medication and the pain went from a steady 6 to a 10. She had just returned from the Spaghetti Factory where she ate an unusual amount of food (another side effect) and the pain hit with a vengeance. I called Dr. C. and he told me to bring her in to Vancouver so he could take a look to see what was going on under the dressing. So that meant I had to do the call of shame and opt out of my shift for the night. As always these moments are always "prearranged" as my friend Angela was in charge; no explanation just her blessing a" family always comes first." The next few hours was straight out of a sitcom as Kourtney and I had to run the gauntlet of nurses and residents in the emergency department explaining why she was there.

First of all Todd had come home from a bike ride as Kourtney had her breakdown. In his helpful/not so helpful way he thought we were going to Abbotsford hospital. We all gave him the stink eye as he finally clued in that we were travelling to Vancouver in the first predicted snow fall of 2018. Staying calm is not always my forte when Todd takes a while to clue in.  I had to remind myself that the reason I felt comfortable driving into Vancouver was because he bought us a reliable van in the fall and he makes sure we have snow tires.. In all of this Shaelyn (the forgotten one) had to be picked up from an appointment. 

As Shaelyn can only do she walked out of her appointment carrying a puppy while a new found friend carried a second.  The pair  are up for adoption and of course Shaelyn had an agenda. "It's for Kourtney!"  Ughhh!  Shae knows anything baby melts my heart. Feeling vulnerable in the moment I almost brought it home.  Knowing I would be the most responsible person looking after her,  the reality of having a puppy sunk in.  So I said ask your father.  Of course that conversation did not go well. It was a nice distraction well it lasted. 

Our drive in was free of accidents but Kourtney's pain was intense. On arrival the ER was full of sick kids with puke buckets and coughs. It was straight from a scene from Elf as Kourtney looked ginormous compared to the other children there.  There was no room to maneuver Kourtney's wheelchair and not one person offered to move from the end.  I planted myself right next to the waterless hand soap dispensers.  Soon we had a nurse take us to a room. I felt sorry/not sorry for her for this poor over vigilant nurse. Blood pressures on Kourtney are difficult when one arm has a picc and the other one is painful, O2 sats and temps are never straight forward. As she went through the long list of Kourtney's medications the poor nurse told me she paged "plastics" and "she" would be there in 30 minutes. I said, "Whoa, we were supposed to meet up with Dr. C. who is a HE."  That poor little nurse with the Harry Potter glasses decided to disagree with me! 20 years a mom, 25 years a veteran nurse vs a nurse of 5 minutes.  Rookie mistake!!  I told her I would be happy to page him myself.  Those Harry Potter glasses became foggy as she was starting to sweat. She went and talked to her supervisor and I could hear the eye roll in her voice. (Anyone who works in health care knows what I am talking about). She chose to continue with her plan of care and brought in a poor resident who had no idea what to do with Kourtney- so she paged Dr. C. 

In 5 minutes the Good doctor comes in. He took action immediately and removed Kourtney"s dressing. Kourtney was a brave trooper as she did it without many pain medication on board. There was no crying or screaming just deep breathing. At one point she had to tell me to quit breathing so hard as I was having sympathy pain.  The wound was deep and raw but the skin graft en grafted. I actually think it's the first time I have seen the skin en graft. The poor resident was dry heaving as the dressing was being changed. The wound becomes a petrie dish of bacteria , the bandages are a great medium that create a pungent odour. Dr. C. and I both commented on the smell but we  know it's normal . There was nothing obvious that could be causing the pain except for the huge gaping wound, So he bandaged her up changed her pain medication. I was all about staying the night but Kourtney wanted to go home. . So we trekked back slowly through sleet and ice and returned home at 1 AM. Kourtney had a great night her pain level down to a 2.  We felt somewhat relieved and after what Kourtney went through I could conquer some nasty highway driving. Kourtney went to sleep quickly.

Unfortunately I didn't sleep, I was hit with a whole new level of insomnia. So many things swirling in my mind. So as soon as the morning caregiver showed up I went to bed, but there were appointments to be made, classes to cancel my never ending list continued to grow. As I finally started to rest Kourtney's pain increased again, I told her to look after it as I couldn't. She dealt with it on her own and her pain improved.

Tomorrow brings a whole new day and another trek into children's for a dressing change. This time she will get it done with sedation so Dr C can have a better look and it can be cleaned up a bit better.
I most likely be there sweating it out with her,  ultimately I am her mom first and there is an emotional attachment that is looming over my head. I am worried about the pain, the biopsy results, the healing, etc. Some days it is just too much for this mama too handle. Thankfully we will have a distraction as Beth and Brielle will join us. They are huge lights to us.

I will let you know how tomorrow goes.

Home!

I wanted to send a post out last night, however we didn't have wifi ( one of the few glitches in the new hospital. )All the time put into planning for this surgery worked in Kourtneys favour. We were greeted by many familiar faces and everyone was happy to see Kourtney. The surgery went smooth except at the beginning Kourtney started bleeding- enough for them to come and find me so I could sign the blood consent. For a few seconds I kind of felt we were straight out of a scene of a tv show sitting in the classy waiting room. But that only lasted a few seconds because  I knew she was in good hands. Turns out that being proactiveh with an iron infusion prior to her surgery gave her the reserve she needed so they didn't need to transfuse her.

Interestingly enough Dr C said encased in the tumour was bone fragments.  Kourtney has  been convinced thst there was bone sticking out. He said we will know for sure when the biopsy is back. He took a graft from her abdomen and said it was perfect. Because she got a nerve block she couldn't lift her hand last night which meant she had no pain. She says her hand already feels better than it did. Let's pray this confinues..

The highlight however was having friends and family visit. I was blessed to have Marijke as my personal caregiver ( no typo there- I needed her) , a former caregiver Meaghan who was on shift that day. Meaghan almost gave the recovery nurse a hearts track when she walked in and started touching Kourtney. ( when you know how to handle her she isn't quite as fragile as she sounds) After surgery  Shaelyn and caregiver Amber   and for the first time ever that I can remember extended family. Luke, Beth and Brielle made the trek out just to see Kourtney. Brielle charmed everyone and of course stole the show. Todd came this morning to drive us home.

It's done I am beyond exhausted . Perseverance pays off..
As I reflect on this experience I have become increasingly aware that Kourtney is a survivor not a victim. Although she lives with one of the most painful  diseases known to man she would never want anyone to see her like that. this is so difficult for so many people to realize. I know that on the outside my family is not the picture of perfection - we are better than that we are bulletproof.

When Todd came to pick Kourtney and I up just the sound of his voice made me so happy. I love him more than I ever have and don't ever take for granted what a great man he is. Shaelyn blows me away at the leadership roles she has taken on at her school. She isn't front and Center playing sports, in musicals but she helps the special needs kids. She may not graduate high school with honours
however she will leave graduate next year, with people skills that most adults don't have. They make proud. Thanks for your prayers we certainly felt Gods prescense yesterday.

The Kourt

My brother Meldon has long called Kourtney "The Kourt." I could not help but smile at the irony as we prepare for another surgery tomorrow. Kourtney  means " surrounded.” As the old saying goes, it takes a village to raise a child. We have been reminded of this over and over again in Kourtney's 20 years of life. But in the last month as we prepare for this surgery it resonates with me even more how surrounded we are as a family.

 To be honest we aren't quite sure exactly what will happen when the surgeon puts her under tomorrow. All we know is that there is a large area on her hand that is painful, unusual and not healing properly. Although her biopsy reports revealed that it is benign tissue, the skin does no look normal and is causing far more pain than usual. The plan will be to clean up the wound and  debride the unhealthy tissue, biopsy more tissue and then put a skin graft on. We completely trust Dr. C. He has looked after Kourtney since she was a baby. He is protective of her and even advocated for Kourtney to have her surgery at Children’s Hospital despite being an adult.  A brand new facility just opened in November 2017.  The post-op pain will be comparable to the pain she is having already. However, this is not as straight forward as it sounds. Kourtney is complicated.

This is what the last few weeks have been like as Kourtney prepared for this surgery.

With all the pain Kourtney is experiencing she has had to increase her pain medication. This does not require a trip to the doctor and then to a pharmacy. Recently family doctors have gotten their hands slapped for the over prescribing of prescription pain medications so it's not easy to obtain a prescription. We have a pain Doctor that comes to our home and always makes Kourtney and I feel better about what she is taking and never hesitates to help us. Kourtney is very cautious about what she takes as she doesn't like to feel tired and sleepy. It's a fine line but we are always thankful that he doesn't ever make her feel guilty for using the medication.

Our local GP is the quarterback for Kourtney. He organizes everything to make sure all requisitions, medication and blood work are reviewed and Kourtney is well cared for. We are thankful for such a supportive man. The one doctor though that goes beyond the call of duty is  is an interventional radiologist.  These doctors have revolutionized health care by doing procedures under X-ray. Because Kourtney is such a difficult IV start Dr. B. will start IV's, dilate her esophagus and for this upcoming procedure put in a pic line. A pic line is wire that goes into the heart. It makes it easier to have IV access and can stay in for an indefinite amount of time. Kourtney had the procedure done last week. What is usually a simple procedure turned into a tough 2 hour ordeal. Kourtney had a mild sedative at the beginning but was aware enough that she felt the pain of the freezing go in and knew that her nurse was a student of her grandpa Dave's. 

For tomorrow’s surgery Kourtney will not receive a general anaesthetic. It's so difficult to intubate her, so they will use conscious sedation. Although she won't remember anything it makes the surgery a bit more complicated as she will continue to feel pain and have reflexes. So in order to achieve good sedation she requires a skilled anaesthetist. She has had a designated one for her last few surgeries. This time she has agreed to help out again. However, it meant another trip into Vancouver. It worked out Todd could take her in. I am so thankful for him. Tomorrow Marijke will be joining us just another part of the village. 

Although there is so much to be thankful for, it resonates how complex Kourtney and her care is. These past few months have been so difficult as we have watched her suffer more than she ever has. They only way I can reconcile this grief is knowing and understanding that Kourtney still has life, a good life. She still is in school, enjoys outings and is so capable in making decisions regarding her care. We know Gods ways are perfect and we can only rest knowing that God controls this sweet little life. My role is to be there advocate and spend time with her. I have peace about tomorrow, it will be a long day but I look forward to. Spending time with her. I feel blessed to be her mama and thankful this journey has been made easier by the people who surround our family!! We will keep you updated.