Thursday, December 11, 2014

A Year in a Glance.....and what a year it was!

    I am going to start by saying I am so thankful for so much this year. I am thankful for family and friends, and the complete support they provide us. I am thankful for my hubby and son, without them I am sure I would stumble. I give credit to those single parents dealing with sickness. I am thankful that my hubby has a good job, because even with health benefits our average medical costs run close to 5 digits out of pocket. I am so very thankful that I live in Canada, because they consider cystic fibrosis a life shorting disease so some of the really expensive drugs are covered. If it wasn't for this, we would be renting a little apartment just to make things meet. We are truly blessed!  I am so thankful for my parents,who live on the same property. If it wasn't for them when I was in hospital for myself or for Annika , I would be a mess worrying about Parker. It is so helpful having them with us for this journey. David can go to work knowing his children and wife are cared for. It takes a village to raise a family with cystic fibrosis.

      This year has been a little crazy, but I wouldn't change a thing. I have learned many lessons. I have met new friends, and rekindled some lost friendships. I have spent  124 days hooked up to an IV this year. My arse has been in bed healing for almost double that. I have lost 40 lbs, but gained so much insight about life. We are nowhere near rich, we actually borderline below middle class after medical expenses, but let me tell you WE ARE RICH in love, faith and life! We scrimp and save every penny we have that doesn't go to bill to go on a family vacation every two years.We earn each and every adventure.We want to see the world. We live life to the fullest, not worrying about the future. We live in the NOW!

     Annika was decorating her little Christmas tree in her room. This year she decided to string her Bravery beads that she has collected over the last 4 years. A bravery bead is earned when a child undergoes different procedures in hospital. I was dumb founded by the total. I cried privately for her, even though she NEVER cries for herself. As a parent you want your child never to feel pain, you want to be their hero. Well, she is my HERO.
     Here are the totals that sum things up for her journey with cystic fibrosis in JUST the last FOUR years:

 485 days (69 weeks) in hospital admission, 16 cystic fibrosis clinics,17 specialists visits,117 dressing /bandage changes, 1,932 infusions of IV antibiotics , 5 line placement or removals (port or picc lines) 8 surgical procedures, 236 pokes(iv starts, blood,etc) that's an average of 59 needles a year! 12 chest x-rays, 3 ct scans, 2 MRI , 13 g-tube replacements (changing MIKEY out) , 892 hours of physical therapy, 2,920 nebulizers (breathing treatments), 336 days on oral antibiotics. Whew!

        Have I blown your mind yet? She never complains, and I have only seen her breakdown three times in those last four years. She is an absolutely amazing kid. The nurses always chuckle when she says thank you after they just stabbed her with a needle. Thank She takes on average 6,205 enzymes a year to digest her food, because her pancreas doesn't work so she can't digest fats. Her other oral meds, not including the oral antibiotics total to 988 pills a year. A whopping grand total of 7,198 pills she swallows on average a year. In our last four years it totals 28,792 pills.
      So when you look at our beautiful child, and think she looks would never know she was sick.....WELL CHECK YOURSELF, perfection takes a lot of!

      I am thankful to have her and my son. My handsome young man who is trying to find his way into the world. Discovering what pre-adulthood is like. His journey in this has been a roller coaster of ups and downs. David and I always worry about him. Anyone who has a sick child, and then throw in a sick worry about them being left out. You worry about them being jealous of the other child. You worry about resentment, and you worry about depression. What our family goes through with this disease, is unlike most families journey.We are not the "norm".
     Parker is a sensitive, caring young man. He wears his heart on his sleeve. His emotions are very readable, and for this I am thankful. I am so thankful that both my children feel comfortable coming to me with their concerns. Parker has no mental health issues, but he sees a counsellor twice a month. We made the decision to do this so he could express his fears and frustrations without feeling like our feelings would be hurt. He is a typical 12 year old boy who is going through puberty.....a trip within itself. He hates school, but loves learning( I know, it makes no sense!) He is a walking encyclopedia on guns, fish, food and history. He hasn't decided if he wants to be a gunsmith for the police force or a chef. We told him he has lots of time to figure that out. He has yet to experience his first kiss, and he thinks Tobuscus rocks. He loves music and movies, and is the biggest goofball out there. He can always make us laugh. Parker is learning how to push buttons, much to his avail. He has discovered that his mom is a force not to be recounded, but I know this is all a part of growing up. Overall he is a caring , loving son and brother.

     I have lots to be thankful for, thanks to my Lord. I have witnessed several miracles, and felt the prayers of many people. It still amazes me, the kindness from people. It can make you humble. So here I sit at 12 am in the morning, thinking of all the things I need to do for our trip next week. Pay the house sitter, make sure I pack the right clothes, medications, equipment. Pay the bills for the year, do the paperwork for funding, clean the house, etc...etc....etc. All I can think is THANK YOU LORD for our life, as crazy and tough as it is, I am still so thankful for every breath, every ache, every tear. I am thankful for life.

      Can I get an AMEN?

      So this is the life of a CF family in a glimpse. I am not posting it for sympathy....anyone who knows me, knows I am one tough cookie and I don't like to dwell on the crap. I post this because one simple glimpse of a innocent little girls handmade garland brought back so many memories of our journey to date. I then realized I haven't posted on this blog for almost 2 years. Gee i wonder why?
    I forgot how therapeutic the writing is, I forgot how after typing my worries and my fears subside. It is digital therapy.
    I will warn you at times there will be swearing, and hurt feelings. At times there will be laughter. At times there will be pain. So in the future I promise to post here more often for my friends and family.
   Thank you so much everyone, for the support this year. We are looking forward to our vacation, and the holidays. Most of all we are looking forward to 2015!

God Bless,


Friday, September 28, 2012

New port, new concerns

Annika was admitted on the 24th, and had her IV port put in. She woke from the surgery in a lot of pain. We had to give her morphine to get it under control. Once she slept, and we kept topping her up on tylenol and advil, we managed to keep the pain under control. While we where in London, we got a lot of answers. We found up what was holding up funding for G-tube and supplies. We learned how to do PEP more efficiently, we changed enzymes, and tried some new supplements. We also did a kidney function test, and got our results for our sputum turned in a week ago. Annika is culturing  pseudomonas. This is not a good thing to culture with CF. We are aggressively treating it with antibiotics , both orally and inhaled. It is possible that we may have to do IV as well. This bug would totally explain why her cough has repetitively been returning. She is not contagious to anyone, except those with cf......which is me. My doctor is going to monitor me closely also. Everyone always wonders why having 2 people in the same house with this disease is such a big deal. Well cf people are very giving to each other, we like to share germs. This will not stop me from being the mother I have always been. I will continue to hug her and love her, and care for her. But like in the past we will have to be careful not to share utensils, glasses, etc. I will not let this disease take away love from my daughter! EVER. It is an issue we will have to live with. We will always share bugs, because when Annika is sick, she wants her mom. I will not deny that. I will not take that from her, being infected is a chance I will take for my daughter.
Now that we are home our physio has been bumped up to 2-3 half hour treatments, 2 inhaled Tobi treatments, extra Ventolin, and hyper tonic saline treatments. She has to take it easy for 2 weeks in physical activity to prevent the port for being jarred. David and I will do our best to kept treatment on a schedule. All the while letting her be a normal kid. I have had people ask me, why don't you work. Lets see between both Annika's and my cf, and hospital admissions, and physio, clinics, and oh yeah my other child and husband......I can barely function now, and a job on top of that? Really? I stopped attending births, which I miss desperately, but realize it is just not possible. I truly need to focus on my family and health. It does break my heart to be out of the birth scene though.
Some days it feels like our whole life revolves around cystic fibrosis. So much has been effected by it. Family, friends, marriage, health.......time? Some days I just want to throw the towel in, but than that little chipmunk laugh gives me what I need to get pissed at this disease and fight it tooth and nail till the end. This weekend is going to be a long one for sure. I have a head cold, along with my hubby. Parker is going away to Cub camp, and Annika is recovering. Hopefully her fever goes away, and her cough dies down for Monday and school or I fear she will be admitted for IV drugs. Time will tell. I promise to keep you posted on changes. Much love from a cf mom still hanging out in her pj's at 2:30 in the afternoon!

Tuesday, September 18, 2012

Admission to London's Children Hospital

Next weekend will be insane. Friday is the first PA day of the year, and that being said it will be the official start of the weekend. Saturday , Annika has dance in the morning and then we will be joining my brother and sister in law for apple picking at Wagner's. Sunday we will start our week by supporting my cousin and his fiance at The Kidney Foundation , to walk in support for his soon to be step daughter Breanna. She is a young lady who is on the transplant list. Too young to have to deal with transplant already. Sunday night we have our little niece Joelle's fourth birthday. Boy did those 4 years go by really fast. CRAZY! Sunday night, my sister in law is joining me for a long ride to London with Annika to the Children's Hospital. We will stay in Ronald MacDonald House on Sunday night. Monday morning the madness starts.Annika will be admitted for a study on her kidneys . She will have to do nuclear medicine, IVs and some new meds. While we are there over the next few days we will be trying new supplements, enzymes, and will be having a IV port surgically placed. Not sure what we are going to do about this cough she has right now, I am sure they will be giving her some meds via IV while we are there. We will see.
I have struggled with this placement of her IV port. She had one placed 5 years ago, and it lasted over 2 years before she developed a blood infection and it had to be removed. Her last admission we had to stay in hospital for IV meds because after 4 attempts, all picc line insertions failed, her veins collapsed, and would not allow placement. So my biggest fear is another blood infection. When you have a picc line or IV and it gets infected, you pull it and voila, the infection clears up. With an IV port, the port has to be surgically removed.This is my biggest fear. Annika has had thrombosis with her last picc line, and she had a blood infection also. She got really sick. It was a really scary time for us. This is my biggest fear with this IV port. I know I have to put this in God's hands, but nevertheless, I am nervous.
Every month with an IV port, a CCAC nurse will have to come in to our home to do a Heparin flush of the port to keep it functional. My child will be poked at least once a month while she has this, and like a child with diabetes, she will become accustom to it, just like physio and breathing treatments are second nature to her. It still frustrates the hell out of me. It still makes me angry. It still makes me envious of all the parents I know who can just make plans with no thought of medications,and treatments. It is not fair for Annika. It is not fair for Parker. Her bother who has to grow up seeing his sister or mom sick all the time. IT IS NOT FAIR! It is not fair to David, some days he has to be father, mother, friend, and healer! IT IS NOT FAIR!. It is not fair that I can't be the friend I should be. I can't be the wife or mother I should be! I can't be the daughter or sister I should be! It is not fair that Annika might potentially have to feel these frustrations herself in the future! I hate the thought of another admission. I hate the idea of my future cf clinic and surgeon consult in October. You  know I just want to be a normal, boring, everyday housewife and mom! I want my biggest concern to be what I am going to make for dinner, and helping my kids ride a bike. I want to hang out with my friends and help them when they need it. I don't want to be in a one sided friendship.....them giving and me taking, taking taking. This is not the life I envisioned when I said I Do. This was not what I dreamed of growing up. I am freaking 40, and frustrated as all hell. I want my son to love school. I want my daughter to never experience another hospital stay, I want my body to cooperate! GRRRRRRRRRRRRRR! I want so much that just comes natural to others. I see people not take care of their bodies by smoking, and drinking, drugs or poor diet. I see them laugh off what they can do tomorrow. I see parents not hug their children, or play with them. I see strangers caring for their children, just so they can still have their social life( we aren't talking about date night, or weekends away) You know the type I am talking about. I personally know people who don't tuck their kids in at night, and scream at them for missing a goal. REALLY? All I want is my kids to get a good education, fall in love, choose a career they LOVE, and maybe if I am really lucky, a grand kid or two. I would love nothing more than to see my daughter marry( if she chooses) and have a child ( if she chooses) Every dance recital I watch , I cry tears of joy, when there are so many parents that just flippantly say " I will catch the next one!" So UNFAIR! I know this isn't a punishment, I don't believe that stupid saying God Only Gives You What You Can Handle! Bull crap! God doesn't punish his children with pain, suffering, and sickness. This isn't God giving me what I can handle! What God does do , He provides me with the ability to handle what is given to me, he doesn't GIVE me the sorrow. He surrounds me with family, and friends ( that at times I am sure I don't deserve) He surrounds me with those who believe. He blesses me with wonderful, loving children. He has given us gifts to deal with this disease. He has given us love. He has given me modern technology, so that I may vent my frustrations to the cyber world. So that I may write and release. Digital therapy  . I know that he has a plan for us all. I know I have NO say in that plan. I know it doesn't help to feel jealousy, anger, or dismay. I know all these things as his child are wrong, yet I still experience these feelings this week more than ever.

Thursday, August 23, 2012

A week post Olympics.....what a ride

This past two weeks have been a whirl wind! The magic that we experienced on our trip abroad is indescribable . I don't even know the words to write to allow you to understand the love we felt . As a family, we totally understand the gift we were given from Proctor and Gamble. It was such an honour to represent Canada at the 2012 Olympics. We wore our colours proudly, and never hesitated replying to questions about our great country we live in. We experienced so much in the time we were gone. Great Britain was so wonderful. the energy, the people, the sights, the food, and the drink. The excitement of the Olympics was everywhere. It was normal to see athletes walk among the people displaying their countries colours proudly, while sporting their athlete badges proudly around their neck. Why wouldn't they wear their colours and ID proudly. They represent their sport for their country, all the while knowing that they may not bring a medal back for their country. I looked at them with awe. I thought here walks someones daughter/son, brother/sister, husband/wife, mother/father. The hope and awe in their eyes at the same attractions we werein awe of, all the time trying not to distract themselves from their main goal, that medal that all our companies promote the winning of, that all the newspapers write about and all the media interviews focus on. What I would love to see is follow up commercials, interviews and newspaper stories about those athletes. About the athletes who managed to have fate on their side and brought home medals, but mostly the athletes that had a medal slip through their hands. We need to remind those athletes all over the world, that we are proud and honoured by their performance. That we understand their disappointment, that we grieve their lost, but ultimately how utterly proud we are of them as a nation. They are our brothers/sisters, mother/fathers,husbands/wives, and daughters/sons. They can not disappoint us, they can not fail. Failure is a part of life, it humbles us. Failure is not what these athletes may experience, it is a twist of fate. A bubble in their timeline, and they need to be reminded that we stand in awe as a nation at their ability just to get this far. Their dedication, and their time and life they sacrificed for our country. WE ARE PROUD OF YOU !
All these "hopefuls" walked the same pavement as my family, they saw the sights just like us. They bleed just like us. They have ups and downs just like us. While Annika and I make sacrifices for our health and body, they make sacrifices for a nation.
We were so honoured to be able to witness this journey for so many. We got to experience the highs and the lows, like so many people glued to their television over the weeks. We just got to experience in person. The buzz, the laughter, the crowds, the host country. What an amazing memory , that I know will never be topped by another.
These coming few weeks I will be going through all the photos of our trip, and I am sure I will be rushed with emotions.I will remember the laughter and the feeling of that time and place. I will remember the London Eye, The Tower of London, The London Aquarium, The Tower Bridge proudly displaying the Olympic rings. I will remember the dinner with good friends, and the walk along the South Bank. All the faces in wax at Madam Tassuad's. The sights and sounds of Great Britain , our mother country. I will remember the feeling I felt about taking a picture with my daughter at Piccadilly Circus, a place my grandmother took a candid snapshot 30 years ago. It felt great to bridge the generation gap. I felt at home in the UK and would love to go back again!
Our friend Herve made our trip to Paris unforgettable! We crammed 5 days of places into two and couldn't have done it without him. He guided us on and off the Metro. He translated for us, in places we surely would have gotten lost. Herve bonded with our crazy kids, even though he didn't have children and was raised an only child. It had to be a culture shock for him. He showed us the beauty of his city. I respect the French for preserving their history instead of knocking it down for a new building. Paris was architecturally amazing. I got to kiss my husband on the top of the Eiffel Tower while our daughter took pictures and grinned like a fool. We got to see the beauty of the Mona Lisa. The towers of Notre Dame where gorgeous, and the Louvre was amazing.The history behind the Arc is amazing. The Paris Aquarium did not disappoint us, and the food was wonderful. Paris will always hold memories for us.
This trip allowed us to experience sights and sounds of countries we could only dream of. Thank you to all those involved in this journey, thank you for this honour.Thank you Lord.

Thursday, July 19, 2012

Look out England , here we come

Things have been so crazy since Annika's last admission and her 7 day stay at Club Met. After recovering from my infection, things started on the highway of healing.I think our healing was quicker because we had something to look forward to. there was a silver lining to our suffering. Not only did we get to meet an amazing fighter, Mary Spencer, but we got to plan our trip to London and Paris. Over the last few weeks , as a family we have really been focusing on staying well, getting our 1st home in Harrow ready for sale( which has proven more stressful then needed!)and finalizing our itinerary for our trip. The kids started a countdown. It is officially only 20 days until we board our flight to cross the big pond. Look out UK, the Hasson's are coming. We are looking so forward to so many things. The Olympics, the country, the people, the food, the fun........the It seems so far away, yet so close. My emotions are all over the place. I pray we all stay healthy till then!