Just In Time

Wendy Porter-Ouellet By Wendy Porter-Ouellet, 27th May 2013 | Follow this author | RSS Feed
Posted in Wikinut>Family>Bereavement

It is never easy to say goodbye to a loved one, or to see them suffer beforehand, but sadly, it is a fact of life. When I first heard that my brother was ill, seriously ill, with amyloidosis, I had no idea what that was, or what my brother would be facing. It was not long though before I learned all I needed to know and at that point, all I could do was pray for Jackie.

My Journey Begins

Boarding the east-bound Via Rail train in Kingston, Ontario, on a cool and overcast afternoon in early April 2002, a multitude of thoughts and emotions flooded my mind, my heart, my soul. With twenty-six long and monotonous hours stretched out before me, there would be plenty of time to think about my reason for this journey, in fact, this time alone would hopefully help me to prepare for whatever lay ahead once I arrived in Nova Scotia.

Halifax would be my first stop, where my nephew J.J would meet me and from there we would drive to Middleton, an hour away, where my older brother (his dad), was a patient in the local hospital. John Wesley Porter, or Jackie, as he was affectionately known to our family, was dying.

As I settled myself in for the long ride ahead, I glanced out at the newly-awakened spring landscape rushing by and let my thoughts drift back to the last time I had seen my brother, six years ago at our mother's funeral. Lack of time and opportunity since then had kept us apart, until now. My mind started sifting through the many phone calls and emails I'd received from Jackie and his wife Barb, since the previous August, remembering one in particular. During that conversation there were two significant topics discussed; Jackie s upcoming retirement from a 40 year career in the Canadian Navy, and the fact that he had not been feeling well for a while. He mentioned that his hands and feet kept swelling, he was short of breath often and felt both fatigued and dizzy on a daily basis. Although he attempted to brush it off as more of a nuisance than anything too serious, when I suggested he see his doctor and have it checked out, Barb assured me that she had already made an appointment for him. On that note, we said our goodbyes with the usual ÈI love youÈ and ÈIèll be praying for youÈ attached. Looking back, I realize that was the beginning of the end for my beloved brother.

The Months Ahead

Over the course of the next four months Jackie continued to experience the same symptoms as well as new ones such as an enlarged tongue, irregular heart rhythm, weight loss and numbness in his hands and feet. The red flags began to wave frantically now as the doctors performed a variety of tests to determine what was attacking my brother's body, but it wasn't until a few days before Christmas of 2001 that a diagnosis was made.
A rare and potentially fatal disease called Primary Amyloidosis was the name given to us, one that none of us had ever heard of. It develops when specific proteins, known as ÈamyloidsÈ, are abnormally deposited in the tissues and organs of the body, impairing their function. Primary Amyloidosis begins in the bone marrow and primarily affects the heart, kidneys, liver, spleen, nerves, intestines and tongue, and in Jackieès case, his heart was the targeted organ.

It was my sister-in-law Barb who called to tell me of the diagnosis and everything the doctors had told them up to that point as Jackie was having great difficulty speaking due to his enlarged tongue. Barb also informed me that plans were in progress for sending Jackie to Boston, where there were doctors who specialized in Amyloidosis, and the hope was, despite there being no cure for the disease, that a suitable treatment could be found. Fear and worry gripped my heart as I listened to Barb but I tried to be optimistic and strong as I asked her to tell Jackie that I loved him and there were many people praying for him.

Boston Bound

Accompanied by his only child, JonJason, Jackie travelled to Boston in February 2002 to the Boston University Medical Centre where there is an Amyloid Treatment and Research Program. After one week of further testing, the diagnosis initially made by the doctors in Nova Scotia was confirmed by the American doctors and talk of treatment options began. While in some cases Primary Amyloidosis can be treated with chemotherapy and also autologous stem cell transplantation, , these were not options for Jackie. The only course of treatment available for my brother was medications and a special diet which could help to limit the production of amyloids, and both of these had already been started. There was one last piece of information from the American doctors, the prognosis, and it was not good. Because Jackie`s heart had been severely damaged by the disease, the doctors felt he had limited time left, two to five years at best. Since nothing more could be done in Boston, Jackie and J.J returned home to Canada.

Back at Home

When Barb called me the day after Jackie and J.J`s return, I knew immediately that the news wasn`t going to be good, I could hear it in her voice. Once she had finished explaining all that had taken place in Boston and given me an update on how Jackie was feeling, my sister-in-law asked me to call my brothers to let them know. Before hanging up, Barb also suggested that we should all come to see Jackie as soon as possible, whispering into the phone that he wasn`t doing well. My heart was aching as we said goodbye, and I promised to phone the rest of our family. I also said that I would be there as soon as I possibly could.
My four brothers were unable to make the journey to Nova Scotia for various reasons which caused me to feel a bit of anger toward each one but I tried to shrug it off. I knew without a doubt that I had to go - I wanted to go- I needed to go- and now here I was, on a train speeding toward to Maritimes.

My Arrival

JonJason met me at the Halifax train station and from there we drove directly to Middleton. During the one-hour drive I listened as my nephew shared his thoughts on his dad`s condition, of the physical changes I would no doubt notice in him. It was his next statement that hit me like a sledge hammer. With a notable catch in his voice he told me his father was in bad shape, and could go anytime, that he could be gone by the time we arrived. I knew my brother was gravely ill, terminal, but I guess I didn`t realize just how critical his condition had become in so short a time. I had been praying day and night that God would intervene and heal Jackie. I also asked the Lord to provide me with the strength and courage to face whatever was to come and to help me accept His will.

Arriving at Middleton hospital around 6 p.m, JonJason and I met Barb in the hallway as she was in search of towels to help Jackie to wash up, and told us to go ahead to his room, he was waiting eagerly for us to arrive. My first thought upon entering Jackie`s room was how much he resembled our brother Jimmy, something I`d never noticed before. He was propped up in bed, smiling while telling me how great it was to see me. Approaching his bed I noticed his eyes, huge, owlish-looking, a bit odd, but I wasted no more time on anything other than enveloping his frail body in my arms, giving him a long-overdue hug. As I followed my brother`s instructions to sit beside him on the bed, we launched into a long-awaited, much anticipated conversation. Momentarily interrupted by J.J`s announcement that he was heading home and would see his dad the next day, our chat resumed and carried on for the next few hours. We had so much to talk about, share and catch up on that it seemed as though neither of us could talk fast enough. During those hours Barb had succeeded in giving Jackie a sponge-bath, brushing his teeth, combing his hair, while joining in the conversation with us. Between the two of them, Barb and Jackie, they informed me that the main reason he was in the hospital was to have the fluid in his abdomen drained, a procedure he`d had performed twice before, one which left him feeling much better, helped to ease his laboured breathing. The procedure had taken place earlier that day and if all went well, according to plan, we could take him home the next day, April 5th. I was so pleased with that news, as were my brother and sister-in-law, as our time together would be much more relaxed and comfortable at their home.

When a nurse popped in to announce that visiting hours were over, Barb and I prepared to leave for our overnight accommodation in a room the hospital provides for the families of patients. Barb had decided this earlier in the day, thinking it would be silly to drive the thirty minutes home when we would just have to get up early the next morning and drive back to Middleton. It made more sense to stay and be at the hospital early in order to take Jackie home, and so that is what we did.

The Shock

With more hugs, kisses, I-love-you`s, and assurances of seeing each other the following day, I slipped out into the hallway so husband and wife could share a few private moments alone. Barb joined me a short time later and off we went to find our room which was in an adjacent building to the hospital. It wasn`t long before we located the building and our room, both of us bone-tired and more than ready for sleep, but Barb thought she wanted a cup of tea before we settled down for the night so we headed for Tim Horton`s. As we waited in the drive-through line which was strangely busy for this time of night, we chatted about mundane things mostly, almost too tired to form coherent words.

Arriving back at our building we noticed an outside patio at the side and decided to enjoy our piping-hot cup of tea at the rather lop-sided picnic table. Barb and I were both smokers at that time so of course we each whipped out our cigarettes and lighters and wasted not time in lighting up, feeling a wee bit of our stress disappear. Our conversation at this point revolved around the man we each loved so dearly, the once-robust, strong military man who was now so ill. My eyes were growing heavy with fatigue after such a long and emotionally draining day, and I knew Barb must be feeling much the same way, so we smoked one more cigarette, drained the last of our now-cold tea, and found our way to our room.

It didn`t take either of us too long to ready ourselves for bed; we hastily threw on our pjamas, brushed our teeth and murmured our goodnight`s to each other. I barely remember hearing Barb say goodnight, I think I was asleep before my weary head touched the pillow. In what felt like mere seconds, but in reality was about thirty minutes, my brother`s wife was softly calling my name, rubbing my shoulder, trying to wake me. At first I thought I was dreaming and oh how I wish I had been, but no, it was all too real...Barb asked me if I had heard her cell phone ring to which I replied a very drowsy no. And then she uttered words that did not make any sense to me, ``Wendy, we have to get up, get to the hospital right away, Jackie is gone.`` It was so surreal to me, I didn`t understand what Barb was telling me, asked her to please repeat what she`d just said. With an expression on her pretty face that I still cannot describe to this day she said, ``The nurse just called to tell us that Jackie is gone, he died a few minutes ago and we have to go over there right now.`` The harsh reality of her words jolted me awake, but I couldn`t speak, not at first, instead I simply got up, gave her a hug, and threw on the same clothes I`d worn all day yesterday, and we left that room.

Goodbye My Hero Brother

Arriving at the hospital in a few short minutes, we took the elevator up to the second floor and proceeded to walk down the hallway where Jackie`s doctor met us, such a stern look on his face. Without saying hello, Barb simply asked this doctor what had happened, we had been here with him only a couple of hours ago and he was doing well. He explained to us that Jackie had rang for the nurse and when she arrived in the room he was sitting on the side of his bed saying he didn`t feel well. The nurse then asked him a couple of questions, which he answered, and then he toppled over, and he was gone. Cardiac arrest. Very quick, very sudden. My beloved brother was gone. The doctor assured us that he and his team had done everything they could but to no avail, and how very sorry he was for our loss.

The next hour passed in a blur. Barb was allowed to go into Jackie's room to spend a few moments alone with him, to say goodbye to the man she had shared her life and love with for 38 years and I went in search of a phone to call my family with the news that I could barely comprehend. When I finished making those very difficult calls, I was given the opportunity to see my beloved brother one last time.

My tears flowing freely, I pulled up a chair to the side of the bed, gently took his still warm hand into mine and whispered how very much I loved him, how much I would miss him all the days of my life until we would be together in Heaven one day. As I placed one last kiss upon my brother's cheek, I gave thanks to God that Jackie was now with Him in Paradise. There was another prayer I sent up that night, to thank God for graciously allowing me to arrive in time to share those last few precious hours with Jackie, to hug and kiss him, to share some laughter, and to tell him in person how much I loved and admired him, how important he was to me.

None of us know what the future holds, or how much time we have upon this earth, and that is why it is so vitally important for all of us to tell our loved ones we love them, what they mean to us, and we need to do this as often as possible. Don't delay, take the opportunity today to say those three little words...I love you....to all those you love. I am so very grateful that God gave me one last chance to tell my brother and for getting me there, just in time.


Amyloidosis, Brother, Sudden Death

Meet the author

author avatar Wendy Porter-Ouellet
Introducing, Wendy Ouellet, a young-at-heart woman who is a wife, a mother of four incredible kids, a former education assistant and now a stay-at-home writer. Many interests, skills and expertise.

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author avatar Angeles Mizilla
27th May 2013 (#)

My heart in my throat, I feel the emotion in your experience, quite thoroughly, I am so sorry for your loss, and hope that in this time, years past that you can remember more of the good, and less of the sorrow. Bless you. Than you for sharing in your beautifully rhythmic way!

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author avatar Wendy Porter-Ouellet
28th May 2013 (#)

Thank you Angeles, I appreciate your kind words. This was a hard one to write as it brought back those memories but I had to write it. I know that you can relate because of your precious dad. It sure isn't easy losing those we love so much. God bless you and have a wonderful day.

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