Koko & Shae

As 2020 is upon us I have been doing a lot of praying,pondering and planning.  I will be turning 50 this year and have been thinking of the best way to bring in this new decade of life. I thought about creating an Instagram account about turning 50 but decided that I am not that interesting. Being a shift worker, coupled with the unpredictable behaviour of Kourtney’s health, makes it difficult for me to committment to many extracurricular activities. In my heart I have felt unsettled in my current stage of life.

Since November Kourtney has had a ton of pain in her knees. Sadly, her pain doctor retired in the summer. We quickly realized that there is not a lot of expertise or comfortability for medical staff in prescribing pain medication. So we went through a vicious cycle of controlling her pain that resulted in Kourtney sleeping through most of the day. I spent many of those days sitting with her while she slept. Every year I make Christmas gifts. To pass the time I decided to get crafty.  I went into full pom pom and macrame mode. It was so satisfying!! Then my sister, Sharon, inspired me to make a natural spray to add to the gifts. I knew it was a hit when Shae and her boyfriend, Ethan, swiped it for their cars.

Seeing Kourtney in such a state has been depressing to say the least. Of course our biggest fear was that cancer was going to be found again.  I could feel the “cloud” forming over my head and I was going down with her. Both Kourtney and I needed inspiration to get through this. On December 26th I had to take time off work due to a neck injury. Needless to say Kourtney and I became a fun pair over the holiday season. My thoughts were consumed with how to make Kourtney feel better. We tried antibiotics however after just one dose she had a reaction that caused even more blistering on her already broken down skin.

The pain in her knees was so bad that even the pressure of cream or coconut oil caused her to shudder with pain. Although the coconut oil is healing and feels good on Kourtney’s skin she hates the smell. It's a known fact that pain heightens one’s sense of smell so it’s extra important that scents are “Kourtney approved” before putting them on her. I went into mixing mode and made a cocunut based spray that was soothing for Kourtney but also was pleasing to her senses. It smelled so good I started using it on my hands as a soothing spray. Little did we know that it would become a kickstart to this new business venture.

After the holidays we went and saw Dr. C in Vancouver. We showed him her knees and he wasn’t too worried about them!  He creatively adjusted her pain medication which now seems to be working. As I redressed Kourtney’s knees I used the “KOKOnut” spray on her knees. We didn’t realize it but we drew a crowd into the room. People were saying how good it smelled in the room. (Keep in mind that we just removed some dressings that don’t always smell so good.)  Everyone from doctors occupational therapists and clerical staff were wanting me to bring some in for our next visit!!!! Kourtney and I both acknowledged that perhaps there may potential, not just for business opportunity, but to help other EB families as well. 

So let me introduce you to KOKO&SHAE!!! “making scents of suffering”

27 Dresses

This is not about the movie.

For those following me on Instagram and Facebook you know that illness and injury are a regular part of family life.  Most recently, Kourtney became really sick a few weeks ago.  This has resulted in countless appointments, procedures and hospital stays. Last month Shae came down with gastro in Mexico, had to be hospitalized and we missed our flight home!  Christmas Eve was spent with Kourtney in the ER with post op pain from an esophageal dilatation. Going back to October 2018, Todd was hospitalized after a bike injury and in November he was hospitalized for kidney stones and needed to get them surgically removed. Oddly enough, none of this has hindered our spirits. We keep on making plans and trucking along.

Our next adventure was my nephew Carson’s wedding in Edmonton.  At first Kourtney did not want to go. But after my extended vacation in Mexico with Shaelyn she wanted to join in the fun. I booked our flights and hotel with no cancellation insurance because surely, what could possibly go wrong? (I live with my glass always half full and now and my wallet half empty.)  But alas I have to be thankful that Kourtney is being treated here rather than risking the trip to Edmonton.

On a brighter note there is a comical side to this whole story that I would love to share.

Over these past few years I have been gaining weight. I have tried everything to lose it.  It’s so difficult to be on a diet or “change your lifestyle” when the rest of the family is not on board.  I had lower back pain aggravated by lifting weights and trying to many complicated and frustrating workout regimes.  In January Todd tipped out the scale and decided to eat lower carb meals and exercise more regularly. This made it easier for me to jump on board. Although I have not lost the 30 pounds Todd has, I feel so much better eating healthier and exercising regularly. I do have an end game - Shaelyn’s grad. We are getting some family photos done and I want to be able to look at the picture and not shudder. My jeans were starting to feel looser and my selfies (which is a whole other story) weren’t reflecting a double chin.

Feeling somewhat more confident, the dress hunt began. Prior to Shae’s grad we had a few weddings to go to, including the recently cancelled trip to Edmonton. Dresses are difficult to find. My first trip was to the basement to my own personal stash of dresses, most of them casual sun dresses. My Facebook friends flooded my feed with suggestions; The Bay, Winners, boutiques, and cross border shopping.  But I was working lots and working out.  No time for shopping (can’t believe I said that).  Then I started online shopping and my obsession began.

My first stop online was Shein.  Shae had bought some items on their website.  The clothes were cute and inexpensive so I took my chances and ordered a lot of dresses tops and summer clothes. There were free returns so why not? (but what I didn’t realize was postage wasn’t paid for shipping back to China). What I should have kept in mind that Shein’s clothes are made for tiny Asian women, not a curvy middle aged Canadian woman. Thankfully, I have a tiny  sister I was able to offload most of the dresses on to. I kept a few of them although they are wearable but still tight. This only made me more obsessive about finding the right dress. I knew Aritzia has a good return policy so I went a little crazy in my on line ordering. I probably spent over $ 1,000 dollars (which in Aritzia money is not that much, but still silly for me).  I found one cute pant suit and a cute casual dress, but it would have not been too compatible with the Edmonton weather. All the rest went back. I was determined to find the right one. Then Kourtney got sick.

Kourtney’s little episode did not hinder our plans for Edmonton. Kourtney continued to feel well. The hunt for the perfect dress for Carson and Mandi’s wedding was still on. Over the Easter weekend Aritzia was having a sale and I found the perfect dress. I ordered it on Saturday, hoping I would get it on Tuesday. In my experience Aritzia delivers the next day but with Easter holidays I gave them a day of grace. But as things have gone in the past couple of weeks the dress did not arrive Tuesday. Later that day, Tuesday April 23, our Edmonton plans were terminated as it was recommended that Kourtney start a 2 week course of IV antibiotics. The dress did not arrive until Thursday morning, an hour or so after our plane was supposed to take off. The irony - it fit perfectly, it was reduced by 60% and it would have been perfect for the snowy weekend in Edmonton; bittersweet moment. Sometimes I wonder why I bother planning as much as I do.

There is a word that I believe that follows me every step of the way.  It’s the word Grace. I believe it’s the God given ability that I can still wake up in the morning not fearing what the day weeks, months hold. It allows me to see life through rose coloured lenses knowing God is in control of every situation. I have to be truthful and say it has been a journey to get to this point. Even these past couple weeks, I don’t want to leave Kourtney’s side because I am worried about what the day will bring.  But Grace shows up in so many shapes and sizes.

The medical team we have is incredible and spread throughout different hospitals and health authorities. (Abbotsford doctor, New West Minister doctor and of course Dr. C, Vancouver doctor) They are all available through text or email and willing to help out. That’s where I believe that I see Grace in our village of family and friends and a home I love. I can’t forget to mention Todd and sweet Shaelyn. I feel so, so fortunate to travel this journey with Todd supporting Kourtney and I every step of the way. (Not one question was ever asked about the online purchases).  Shaelyn has become my right hand person and enjoys driving me around and the best little back seat driver there is. (She often forgets who taught her to drive) But oh I how love her. It’s these things that keep my rose coloured glasses from fogging up.

Our life has been an ongoing story of hardship, challenge and disappointment; it is also a story of Hope.  Our life is anything but “picture perfect” but it is full of Purpose and Meaning.  The way we look at it is that our lives have a Purpose, planned by God and we choose to accept it; the good, and the bad.  It gives me the Hope I need to get out of bed in the morning knowing He has our lives in the palm of His hand.

1 Corinthians 10:13 New International Version (NIV)

No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted he will also provide a way out so that you can endure it.

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!!