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!!