Follow by Email

Friday, September 21, 2012

Just what I needed!

Although my story is pretty heavy, there were wonderful uplifting moments during my hospital stay, and I have been thinking about one in particular for over a week now.  But you will need some background.

I love music, when I think back to my childhood and teenage years, I actually have a soundtrack in my head that goes with certain memories.  I had aunts and uncles that loved everything from Johnny Cash to the Guess Who and everything in between.  Growing up in Cape Breton meant that you listened to "Scottish Strings" at 6p.m. after the five o'clock news was over.  At least at my house.  Fiddle music was like the backdrop music to the memories, like sitting in the cars at the square dances in Glencoe and listening to "our" music while the sounds of the fiddle drifted out into the night air from the hall.

But as much as I loved music, I don't even know if I can tell you how much I adore one musician in particular.  Those that know me, will be chuckling by now, because I loved Matt Minglewood before it was cool to love him, and everyone knew it.  I don't remember which aunt or uncle introduced me to Matt's music, but I know it was either my aunt Mary, or my uncle Neil.  I do remember that Mary was the one who bought me my first album.  On a hot summer day 32 years ago, I met Matt Minglewood for the first time.  I was seven at the time, and was wearing a spaghetti stained spiderman shirt, shorts, and rubber boots.  I do not remember if I even talked, but I remember how he picked me up and put me on the hood of Dads' old green truck and addressed me just as he was talking to the others that were there.  He signed my "Movin' On" eight track, and I became an even bigger fan.

Over the years I can give you such amazing stories about the great fun that I had with my friends and family when I went to see Matt Minglewood play, the first time I saw him live was at a prom in Judique, and I stood there with a silly look of amazement near the stage when I wasn't dancing.  LOL, no wonder my friends would give me a hard time for being a groupie.  Little did they know, I had collected every scrap of paper every written about Matt since I was in about grade five, and kept it all in extensive scrapbooks.  I showed a few to Matt one time, and I am sure he thought I was a bit of a weirdo.

So two days before my transplant Matt was playing at the arena in my hometown of Mabou.  I was determined to go, and I remember begging the doctors to let me out, I promised I would return in the morning.  I thought that if I was going to die, I needed to see Matt one last time, and dance with my friends to my favorite songs.  Colleen MacDonald and I would dance like no one was watching when we went to Matt.  We knew people talked about how we would dance from the very first song Matt sang, while others were still gaining their courage with a few rum and cokes.  We would dance with each other when no boys were ready to hit the floor, and we always danced to Whiz Kids because that was "our" song.  I told all this to Dr. Neville, and he said he was sorry, but there was just no way it could happen.

When my uncle Neil and aunt Marion heard how I longed to see Matt, Neil went to the arena to see Matt just to tell him how sick I was in hospital in Halifax.  Years later my aunt Marion told me how they couldn't get a babysitter that night, so Neil went anyway, and when he went out to start the car some kittens had crawled up under the car, and they both had to go out on their hands and knees to coax them all out before he could leave.  The things that people did for me!  But I didn't know all that.

Meanwhile, I had the transplant behind me, but the drugs were taking a terrible toll on my body.  I was in and out of consciousness, and so sick, that part never ended.  But remember how I told you the nurses would come in to tell me if I had a visitor?  Well, Matt had arrived in the unit, and all the nurses were busy with other patients.  I had no clue he might come to visit, and was asleep when he entered the room.  So when I opened my eyes I thought that I had finally died and Matt Minglewood was the first person I was seeing in heaven.  I was groggy, and confused, he was wearing his trade mark cowboy hat, but he had on one of my doctor's jackets.  When people came in they had to put on gowns and masks to see me, with no nurses around to direct him, he had dressed the doctor part, and had stayed while I slept so he could see me.  I am not sure how long he had waited, but I honestly was so overwhelmed I rang for the nurse.  I asked her to sit me up some, and wash my face, while I apologized to Matt for how horrendous I looked.  I could not believe he was there to see me.  He did not know me that well, so for him to drive to Halifax to visit this sick teenager, well, now you know what kind of person he is...simply fantastic. 

Under his arm was a "Gund" dog, and he tucked him in beside me as he sat in the chair beside my bed.  The word on spread on the floor, and several nurses from Cape Breton found excuses to pop into my room in the next while to meet a living legend.  It was pretty funny how some of them pretended to not know he was there, but I shared the whole experience happily.  Matt's real name is Roy Batherson, and the new dog by my side quickly gained the name Roy as well.  He still sits on my dresser in my bedroom.

Sometimes when we show each other kindness, you really don't know how much you can affect the other's life.  I don't think Matt has ever understood how much his effort meant to me, and to all my family and friends.  Or maybe he is just a very modest man.  However, his visit brought me such joy that it carried me through many rough days to come.  As is came time for him to leave, he leaned in towards me on the bed, and very softly sang me a verse and the chorus of "Me and the Boys".  There are some days when I still think about that day, and it still brings a tear to my eye.  Be nice to each other, it is better to be remembered for touching someone in a positive way than a bad one.  And love people, and music with passion, they will both carry you on your worst days. 

Saturday, September 15, 2012

Day One

If we thought that transplant day was long, well, "day one" was never ending. Remember that movie, "Groundhog Day", where Bill Murray keeps waking up and having the same day over and over. Yep, that was what day one was like. Whenever you have a bone marrow transplant, there is transplant day, and the day following is called day one, then day two, and so on, kind of like you are counting all the new days of your life.

At the end of my bed was a white board that you could write on if I was asleep when you were visiting, where my blood counts of the day were written, and on day one a nurse came on shift at six or seven in the morning, and wrote in great big letters:

Day One
Right underneath this the nurse wrote my counts...I only remember my white count, it was .4.  Someone's usual white count ranges from 4.5 to 10.  The rest of my counts were extremely low as well, the chemo and radiation had killed everything.  It seemed I had a little climbing to do.  I fell asleep, and woke up around 7:30a.m., and was convinced it was day two.  But once I could focus there was the "day one" sign still staring back at me.  By this time I was constantly sick to my stomach, but my poor Doctor Neville was convinced he was upsetting me in the mornings.  He wore these fancy dress shoes with little tassles on them, and when he was coming I could hear his heels click on the floor as he was approaching the door.  By the time he reached my door my head would be hanging over the side of the bed, thus, I knew what his shoes looked like.  And to be honest, I guess when I heard his approach I would get tense.  I was scared of what he would say I would have to do that day, what tests would have to be done, what results he had and if they were good or bad. 
He was a "big city" doctor in my eyes, and every time he came into my room he would wonder about the growing number of cards that the nurses and my mother had taken to putting up on the wall.  There was no room for them on my window ledge any more.  He was amazed at the amount of support I was getting from a place that I described as a small town village on the east coast of Cape Breton.  But it was not just my home town of Mabou, it was the surrounding towns of Port Hood, Inverness, Judique and Port Hawkesbury that were sending cards, dropping off meals to my siblings, and putting me on their prayer lines.  How lucky was I to be born into such a wonderful part of the world.  Doctor Neville would eventually make the trip to Mabou to see what all the fuss was about. 
At 10a.m. Doctor Neville came to see how I was doing.  He said we would know be watching for rejection or infections.  And we would wait for my counts to start to going up.  It sounded simple.  I fell asleep again. 
On Day One something wonderful did start to happen.  There was one person who I was missing more than I ever thought possible, my Nanny.  She was my father's mother, and she lived just down the lane from me when I was growing up.  She had been sending letters with people who came to visit with me, and I had spoke to her once on the phone since leaving the Harbour.  In her letters, and her call she kept reminding me of a promise we had made each other years earlier, which I will tell you about in a future blog.  But she also kept saying that she was with me in spirit and praying so hard for me.  On Day One, Nanny's sister, Jenny, my dear, darling Aunt Jenny came to visit, and she became probably the most frequent visitor I had outside of my parents.  Aunt Jenny looked like my Nanny, she talked like my Nanny, she loved me like my Nanny, and she set my priorities straight when I needed it.  Aunt Jenny's daughter, Debby had a son named Jason, and he was coming into town to the IWK for cancer treatment, and was a patient there while I was in the VG.  I don't think anyone could have kept Jenny away from visiting Jason when he was in the hospital, and I was lucky that she took even more extra time to come see me as well.  She perked me up every time, and reminded me every day how lucky I was, she was like Nanny like that complaints, no feeling sorry for yourself.  Two of the strongest women I have ever known, and I was lucky enough to be loved by them both.  That day Debby had come too, and when I was telling her that I was too sick to watch anything on tv because it made me motion sick, she asked if there was a time of day I could watch something.  When I said maybe late at night I could watch something, she went and tracked down a tv and vcr and rolled it into my room.  Then she went to the store and bought me a Billy Rae Cyrus concert movie, because we both thought he was hot, and Wayne's World, because I had told her it was the funniest movie of all times.  I could see the doubt when I told her that, but she bought it anyway.  That was the kind of people they were to me...even though her son Jason was very sick himself, they still reached out to me to try to make me feel better.  When I started writing this project, I wondered every day if they were reading it, and I worried about it bringing back too many memories. 
On Day One, I fell asleep and woke up about fifteen times, and each and every time I woke up I thought it was a different, new day.  At supper time I made Mom ask the nurse to take the offensive words down off the board.  I thought that night I would watch one of my newly acquired movies, but that would happen in a few nights, and bring memories to be treasured, which again, I will fill you in on very soon. 
After all that waiting Day One was over, and it had some positives, you have to look for the positives right? 
I know some of these posts are longer, my time to work on them is limited, so stick with me.  Some laughs and more tears, unfortunately to come!  Oh, man, you are not going to believe the visitor stories I have in the next few days!

Monday, September 10, 2012

The Avro Arrow

Tonight my 15 year old son sat down and composed the following about an issue that he is passionate about.  I am imploring everyone to share this as much as possible, and help him realize that politicians will listen to Canadians, no matter what their age, or passion.  He just wants someone to explain to him why decisions are made the way they are, and to take an average Canadians point of view into their decisions.  He will be a leader in our country some day, there is no doubt in my mind, help him make a start.

Mitchell's commentary:

Hello Mr.Fantino and Mr. MacKay,

My name is Mitchell Murphy. I am 15 years old and from Fort McMurray Alberta. I have just heard through various media outlets that you were one of the main deciding factors in the re-scrapping of the proposed Avro Arrow program. As an air cadet, a possible future member of the forces and a proud Canadian, this is a big disapointment. This was a golden opportunity to bring back a huge part of Canada's history, that never really took off. Not only is the Arrow a symbol of who we are, it would create jobs that could help strengthen our economy and develop our already very strong aviation background. Also, not only in the matter of careers, the Arrow would be a much better purchase compared to the F-35. The re-modeled Arrow would be faster, could fly higher, and fly further then it's out of country counterpart. And think about this: all weather fighter over a plane that would have major troubles patrolling an already very vulnerable, not to mention huge besides, northern Canada. Also, I heard that stealth is a 'big factor' on the checklist of things to have in a plane. Although that is a good point, the F-35's stealth capabilities would be hindered in many instances, including being on a wrong angle compared to radar waves, to close to a radar signal, or, my favourite, with weapons attached. At least if the Arrow was detected somehow, it could outrun the enemy fighters, etc. Although foreign relations are very important to me, as it is for this program, developing a strong relation with the United States, by paying them through the nose for a plane that shouldn't live up to Canadian military standards. I guess a big question for me at this point is: Why keep fighting amongst our own government and people over plane costs, while still paying another country for said plane, when we could be making our own, Canadian-made alternative that would help our economy and, best of all, give our nation something to agree on and get behind in autonomous agreement? Hearing myself say that makes me kind of sad actually. When I first heard of the new plan for the Arrow, I truly was in a state of bliss, you could say. Something that a whole NATION could be excited about, and it's regarding the military? Perfect! The stars have aligned in favor of our under-exposed military. I was really hoping that the goverment would seriously consider this offer, get the idea out there, and ask US, the heart and soul of decision making in this amazing country, how we feel about something of this magnitude. But instead, we find out about this project near the end of it's life, it would seem, through several media sourses trying to get the word out there. Why can't the people know about intentions of the goverment, especially with regards to the military. Everthing seems to be quiet, backroom deals that we can't know about because the goverment knows that they probably shouldn't be doing it. This is discouraging, considering our values and interests as Canadians. I like to be proud of who's standing up for my rights and my country. And I'm not just talking about our under-funded troops. Our government should be there for us. They should have our backs even when we aren't paying attention. And again, they seem to do the oppostite again, and most of us are letting them getting away with it. Not me. I know it is in your power to bring this issue up, and I should really hope that you at least consider my propostion. I will be sharing this e-mail with others that I know that have major public influence, so expect more than just a mere e-mail from some teenager of whom you've never met. This is all a first for me, and I hope that I have left an impact on you and your future decisions regarding this very important topic. Feel free to e-mail me anytime,, or call at 1-780-748-7714. I hope to hear from you soon Mr.Fantino and Mr. MacKay.

Mitchell Murphy
Fort McMurray, Alberta
Formerly of Cape Breton, Nova Scotia.

Thursday, September 6, 2012

Transplant Day

August 24 is a day that I will never forget or ignore.  If you talk to anyone who has any kind of transplant, that day is like your second birthday.  The 24th is mine.  The nurses were in bright and early that day to start doing some extra tests to make sure I was all prepared to receive Virginia’s bone marrow.  For most of the morning, Virginia was the only thing on my mind.  She was only 12 at the time, and I felt so guilty that because of me she was going to have to go to surgery and be put under anesthesia for the first time.  Even though Doctor Neville assured us all that it was a simple procedure, and that he was even going to do it himself, I felt like I was holding my breath all morning waiting for word that she was done. 

During the procedure Virginia would be asleep and unaware, and Doctor Neville would go into her hip bone, much like a bone marrow biopsy to retrieve the much needed marrow.  They told us that if they could not get enough from her hip, they would go into her breast bone.  This sounded so much worse to me, and I can remember praying that she would only have to endure them going into her hip. 

Mom had gone up with Virginia, and my aunts Sadie and Ruby had come up to help us all get through the day.  It was a sunny day, and I remember asking Sadie to open the blinds, and then she had gone out of the room for a few minutes.  When she went out, the sun hit the mirror that was on the wall to the right of my bed over the sink, and I had the sudden urge to see what my bald head looked like, so I asked my aunt Ruby to help me get positioned on the bed so I could see my reflection. 

My poor Ruby, she is one of the most soft hearted, kind people in the world, and I know that she loves me unconditionally, and she was having just as hard time with me being sick as my Mom, Dad and my Nanny were…so she seemed a bit reluctant to help me up, and I couldn’t understand why.  I had not yet seen my head, and that was really all I was thinking about.  But when I sat up, Ruby sat at my back to help support me sitting up, and there in the mirror was a stranger.  The girl looking back at me was not only bald, but her eyes were black and yellow from my eye brows to almost the middle of my cheeks, and were all swollen so that she looked like someone had beaten her badly.  Her lips were cracked, dry and had pieces of dry blood in the corners, and her actual color was kind of a pale green.  All I could do was stare for a few minutes, before I finally lifted my hand to touch my eyes, and the girl in the mirror did the same thing.  It was then that my ego took over, and I started one of those deep sobbing cries, where the snot runs down from your nose, and you feel like you can’t catch your breath.  And suddenly behind me, I could feel my aunt’s body, matching mine in sobs as she held me.  All she kept saying was that she was sorry.  Sorry that it was all happening, sorry that she had helped me sit up, and sorry that she couldn’t make it better.  It was not just me that was being affected by aplastic anemia, it was wearing on everyone around me. 

Around 11a.m. Mom came back to tell us that Virginia was out of surgery, and that Doctor Neville had been able to get enough marrow from just her hip, he extracted about a litre and a half altogether.  The transplant would happen at 1p.m.  For all the talk of this big transplant, when the time came my mom had actually gone to check on Virginia, and my poor aunt Ruby was there, I am sure having a heart attack as they came in to start.  But all it really was was just a milky, bloody looking bag that the nurse took in to hang on my IV pole.  It would go into the line on my chest, and would take about twenty five minutes.  The scary thing was that I was monitored very carefully for a few things, there was a great chance that my heart could stop, and there was also a chance that my body would immediately start rejecting the new marrow, and with that various things could happen; it could be as simple as a temperature, to something more serious as seizures, the nurses stayed and kept watch, and Doctor Neville also came in to reassure me that Virginia was okay and that things were going well.  After seeing me, he went and told the nurse to help Virginia come to see me.  Seeing her hobble in the room was all I needed to relax and carry on with the day, and I think Doctor Neville realized that, he was starting to grow on me.

And then it was over, Mom, Dad, Ruby and Sadie all sat around me that afternoon as I kept falling asleep and waking back up.  I think all of us kind of thought that something would happen right away after the transplant, but it didn’t.  Mom and Dad looked exhausted that night, but happy to take Virginia back to the hotel with them.  Tomorrow would be “Day One”, and we wondered what might happen.

 God was far from finished with me yet, and there are so many more stories within the "big one" to tell!

Wednesday, September 5, 2012

First days....and being terrified for our kids.

I hope you will bear with me while I go off in a totally different direction today.  If it helps, I hope to have the next section of my other story up today as well. 

Today I am starting another journey of sorts with our youngest daughter, Shayleen.  Today I am, for the first time, turning her out to "public" so to speak, as she will be starting half days at school out here in Fort McMurray.  I have never done well with any of my kids starting school, and I still hate every single September as my older boys keep getting just that...older.  After having such a hard time having my boys, I feel like I am losing part of them every year when they go back to school and are that much closer to graduating.  I remember when they were really young, I would wish I would live to see them graduate, but now I want it all to slow down some so I can have them with me a little longer.

As for Shayleen, the best way I can describe how I feel today is absolute terror.  We adopted  Shayleen, but she was with us since her first day of life.  To tell you how lucky or blessed I have felt to have her in my life, I just can never put into words.  Due to the fact that she was a foster child first, and that she had many medical issues in her early life, I think we all felt even more protective of her over the years.  Even though we never left her one night alone in the hospital, and have only just recently left her with our best friends for a much needed vacation, we have still heard people say totally inappropriate things, as well as make racist comments about our dear little girl.

You see, we will never lie to Shayleen about where she came from, I thank God, her biological mom, the Driftpile band, McMann Family Youth and Family services, and the government of Alberta for all playing some type of role in bringing us together.  And I thank them every day.  When I think of how she could have been moved, or even died, I have to say God wanted her with us, and that fate plays amazing roles in people's lives, even when we don't know it.

When the boys started school, I literally followed the bus for two weeks.  I made myself available to the school for volunteering, supervision, school council, you name it, I wanted to be part of it all.  The poor boys, and the poor teachers that had to put up with me over the years. And then when we moved to Fort McMurray, I was scared of everything all over, not knowing anyone, the bus, the bigger school...yep, just about everything! 

But it is different today with Shayleen.  The boys are at a different school.  They won't be around to look out for her.  I won't be around to look out for her.  How do I teach her that kids may say some mean or even cruel things without making her think she is different?  I know some kids will eventually point out to her that she is looks different that the rest of us.  And as much as we have tried to prepare her, I hate the thought of her sitting on the playground some day alone and thinking she doesn't belong. 

Of course, I could try to keep her home, and sheltered, and hope that she would never encounter any cruelness in her lifetime.  But hopefully we will raise her the same way we raised our boys, and she will grow up to be a strong, independent woman who knows she is loved, and is smart enough to know that families now come in all shapes and sizes, and that she just has a huge one, that includes many communities from both Nova Scotia, and Alberta, so she is a very lucky girl.

I will look for help from the community, school, and those blessed teachers to help me to continue to raise our children....but really, pity help that first snot nosed little kid that gives our baby girl a hard time, lol.