HAPPY 3rd BIRTHDAY EVELYN!

Evelyn loving her bunny cake!

I find it very difficult to write anything down these days. It is certainly not for a lack of thought. In fact I can’t seem to stop my mind from running. My emotions are constantly getting the better of me, I seem to have lost my ability to control any emotion that my brain or heart feels. Many times a day I lose my temper with Evelyn and often do or say things I regret. I spend the better part of my day feeling so guilty about the way she has been handled lately. She is so vibrant, full of energy and brimming with life. My thoughts are that Chris and I are not the only ones who are struggling to figure out a new way of life with everybody at home. Evelyn is constantly getting into trouble and being ‘naughty’. I look at her in amazement at some of the things she does and wonder what she was thinking. But I am sure my reaction to her behaviors is exactly what she is after. She needs some serious attention and one and one love from Chris and I. Today for her birthday Chris and I took her for lunch (at Costco – her favorite place!) and she behaved like a charm, golden. It was so great to spend some quality time with her and tell her how much we love her and how much she means to us.

Just being a little silly!

This is the second time I have blogged about Evelyn’s birthday. The first time was one year ago when she turned two. I thought she was so big then and her birthday came roaring at us when Christian got sick. The days go by so quickly and I have very vivid memories of her toddling into the oncology ward, barely able to speak but charming the pants off everybody around her. Now here we are 365 days later and she races around us like the wind. Full of life and spirit. We had a fantastic, if not a little frenzied, birthday party with a houseful of people, pizza and fun. It was great to be amongst a group of friends and feel ‘normal’.  Because life feels anything but normal right now.

Hello...could she get any cuter?

We are days away from our west coast adventure and I can’t even seem to get my brain on board. I feel angry and frustrated for most of my days and I don’t have a good answer as to why. Its like somebody reached inside of me and plucked out my cheerful and energetic self and replaced it with a grumpy, tired and frustrated old bear.  Sigh. Christian has really been struggling with his emotions as well – “normal” everybody from the oncology world tells us. A diagnosis of posttraumatic stress disorder seems imminent because of his middle of the night screaming episodes. The other night I thought he was possessed by a demon when he eyes were alight with fear and he kicked and screamed. He grabbed me by my throat with a strength I didn’t know he had and two seconds later is begging me not to leave him. His body and his brain are so beat up they have no ability to process all of the emotions and fears he has been harboring this past year. He incidents seem to be triggered by episodes of pain – mostly in the middle of the night when he isn’t expecting it. Like we are tricking him and he wakes to a nightmare.

As I am typing this in bed beside him he is watching an episode of the Backyardigans and singing away with the dance moves and all. It makes me wonder how the switch is so easily flipped from this courageous and smiley little soul, to the angry one that meets us in the middle of the night. Needless to say these scary episodes have literally tapped Chris and I clear out of energy and fight. This all being said and sounding horrible he is doing so much better. He is getting chubbier by the minute and watching him stuff 4 and 5 cupcakes into his mouth tonight brings some peace into my heart. He limps around less and runs better. His laughs more often and, as always, his old soul makes Chris and I smile on a daily basis. So I pray for peace in our hearts and strength for this upcoming trip.

 Today at Church we listened to a sermon about marriage and it was exactly what Chris and I needed to hear.  Pastor Doug’s words will give us something to extrapolate on while drive and drive and drive. That God is for us even if many forces are against us but if we can stay united as a team and attack our problems together instead of attacking each other, we will be victorious. Christian has his plus 100 day scan in 30 days. And already I am trying not to allow negative thoughts fill my mind. It is done and God has cleared a path for Christian to be triumphant. He has held us for the past year and a half and I know that He will continue to hold us up during these next weeks and months.

Jeremiah 29:11

For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.

Today I am thankful for:

1.     Listening to Chris laugh

2.     Listening to Christian sing along with the Backyardigans with his ear phones on

3.     Listening to Evelyn say, “tha-anks” for her birthday gifts

4.     Christian going swimming for the first time in a year

God's Not Dead

Happy Easter!

This transition between cancer and no cancer has been one of the hardest things I have ever done. I often refer to the situation being like watching a horror movie. During the day when scenes are sunny and the lights are up, it doesn’t seem so bad but when dusk settles and the lights dim, my anxiety levels skyrocket and I am scared to put my head down at night. During the day we jump around and play, we laugh and make jokes, I tickle the kids silly and Chris and I shine as we watch Christian running to the park or jumping in to play with his siblings. But at night when he falls asleep a whole new world brews. He starts to moan and cry and often will say to me after a few hours of sleep, “I don’t feel so well”. And I don’t care about much you’ve gone through or how much we trust in God’s plan – when he clutches his tummy and says he feels sick – my brain instantly narrows in on cancer. I have to take a deep breath and talk myself out of this frame of mind; but the thoughts linger on until the sun comes up and he feels better. I don’t know if I can describe the anxiety of post treatment. Of waiting for his first set of scans. Of wondering how the next few months will go. Of trying to find a new normal for our family. Or just trying to learn HOW to be a family again.

EASTER MORNING

I have been informed that 80% of families in post treatment end up in divorce or separation (a studied fact) and now I understand why. When Christian was in the hospital getting chemotherapy or when he was sick, there was a reason for anxiety and stress. But it seems that once you are at home all of that stress and fear should be gone – but its not. In fact I am going to say it’s almost worse. I wish I could put my fears and frustrations into words but there are none to describe how I feel. A constant 'sick to my stomach' feeling that never really dissipates. We have planned a few road trips and vacations in hopes that some time together away will help to mend our spirits. I pray that it brings healing to us all to have a few fun days on the water. I pray that driving through the mountains, walking the beach, driving the golf course, eating at a random McDonalds, watching TV together on a hotel bed and continental breakfasts in the morning might help us to feel like a normal family that hasn’t been ripped apart over the past 16 months. 

Checking out the Easter Bunny haul 

Funny that I am having these deep, heart wrenching moments on Easter Sunday. The day our Lord rose from the dead. There has never been a stronger case for faith than this. That Jesus would pay the ultimate price so that I can talk to God, trust in God’s faithfulness, hold on to His hope, and know His peace in my heart. And I do – everyday. In fact I think this is probably the reason that Chris and I are still together. That despite all the horrible things that are going through our minds and the emotions we are trying to cope with, we can look at one another and gently remind each other – we need to pray about it. Our reminder to each other that this isn’t a burden we need to carry alone; in fact He wants us to ask for help, He wants to carry us. I need to be carried. I need somebody to show us how to be a family again, how to implement rules, how to show unabashed love, how to cope with the small things (a spilled cup of coffee or muddy shoes on the floor). I crave the open road and a late night hotel. I crave the smell of the salt water and the feeling of zero responsibilities (except food and sleep!)

Rolling the head!

Providing Christian can stay healthy we will depart for Vancouver in a little over a week and the time is just ticking away.  At night when he wakes up screaming, either from nightmares or pain I wonder if I even have the strength to leave the house into the great unknown. So I would ask that you would pray for an incident free vacation. The Christian would be freed of his nightmares and pains and the he would rest comfortably without any demons chasing him. He told me the other morning (after a great amount of prodding) that his most recent nightmare involved me shoving something black and brown up his nose (like a tube) and he couldn’t talk or move with it in. He couldn’t ask me to stop or ask for help. And I wonder if this is how he has felt for the past few year. That he has had no choice about what has happened to him. We drive him to the hospital. The nurses attach him to lines and the drugs run in. Somebody shows up in his hospital room to shove a tube down his nose – and he never gets any say. And he always looks at me and says, “mommy, no”. And I don’t stop them. I think this might be a nightmare I will have for a long time. I often wonder, if I am feeling this way, how does he feel? How does a 4 year old express anxiety, anger, frustration, fear? How does he deal with all of these pent up emotions? How do I help him to heal? I don’t know.

Nothing more healing than building a snowman!!!

I thought it was a bit of a stretch when I was reading online about parents and grandparents suffering from post-traumatic stress disorder after cancer treatments. But now I understand. I have a heart attack anytime loud noises erupt. I have anxiety attacks when I think Christian is in pain or getting sick. I can’t sleep and I have zero energy. Thank you Jesus for giving me strength when I have none; hope when I am tapped out and for loving me when I am unlovable. You are the best Teacher, Father, Confidant and you are the source of the peace in our hearts.

let them eat cake!!!

Inspired by my friends Andrew and Sophie....brought to life by Pintrest!!!

Today I am thankful for:

1.     Watching Bubba win the Masters.

2.     Recipes that turn out the way you hope

3.     Listening to Christian sing out the words to “God’s not dead”

Loving all the cousins together!

Long Time Coming

Love those eyes - bald or not he is beautiful

It has been a struggle these past few days. I feel like I should be joyous all the time but to be honest with you it just seems like there will be no end to these trails. This morning I woke up with my back completely seized up again and felt so defeated. Despite the fact that I feel like “kaka” Christian does seem to be getting better each day. Yesterday we were at the park and he hit his face on the slide on the way down and it tore off the tape, which holds his NG tube down. He screamed in agony – not because he was in pain but because he was fearful he was going to have to have another one inserted. We yanked it out praying that he eats enough to sustain himself and hopefully even thrive. I pray that every crumb he eats has a 10 fold calorie factor (and minus 10 for me!) He limps around on his right leg quite a bit, as left leg is extremely tight and sore. Other than these small conundrums, he seems to be getting brighter each day. I type this then sure enough he awakes hours later screaming in pain and I feel like all patience and energy has left my body. I scream back because I have no idea how to help him. “Please tell me how to help you, Christian!” "I don’t know mommy", he says. And we both sit there sobbing because I have no idea what I am supposed to be doing. I am assuming they are growing pains or pains from having tight muscles. But of course the devil on my shoulder is telling me that it is cancer. I try to catch my breath and not throw up because I am positive I have just won the worst mother of the year award – who yells at their sick child because they don’t know what to do? Not a proud moment in my life.

All of our children have grown and blossomed so much since we have been able to spend time together. We sit down at the dinner table and eat as a family (that is when Evelyn hasn’t decided to sit under the table pretending she is the family dog!) Last night at dinner we discovered when counting the peas on his tray that Ryan knows how to count to 10. My mother was counting the peas as he was placing them into his bowl. And to our amazement he started counting along with her. He puckers his little lips and says, “twwwwoooo”. Then he spouted out the word nine and Chris says, did he just say nine?  Ryan thinks its funny and claps for himself.

WHO ME????

Evelyn keeps getting herself into trouble by making a mess or tearing up her books – thankfully she just blames things on her hands or her feet. “Mommy it was just my hands – they didn’t know what they were doing”. The other day she told me her bum wanted to out and sit on the swing. This evening while trying to lay in bed and read her some stories her resident bed giraffe was stomping on my neck and she says, “there mommy – do you feel better? My giraffe stomped off your sore neck and now it is on his paw – and he likes it!” Does it get any better than that? I love her so much.

This morning I worked my way downstairs to the lazyboy to ease my back and try to rest more comfortably. The sun had just come up but Christian knows immediately if his ‘skin’ has left the bed and he shortly follows me down. He comes and tries to sit on my knee but my back so was so sore he just sat beside me. A few minutes later he looks up at me and says, “Mommy don’t you think you should be icing your back?” He is so grown up and it made me realize how close attention he pays to everything going on around him – even when we think he is not listening. Either that or its what happens when your mommy is an athletic therapist – time to take some of my own medicine!

Christian and the Phaneuf boys enjoying some playtime

So this week brings Christian’s monthly dose of antibiotic as well as his surgery to fix his ‘pee issues’. Hopefully he will not be in too much pain and we can move on with planning our road trip to Vancouver, his cousin Grace coming to visit and our long anticipated beach trip to Florida. I have been a crazy woman running around trying to organize and fix things up in the house. I have been trying to de-clutter and get rid of the extra ‘stuff’ in our home. I am of the opinion that the ‘stuff’ is taking up room in our house and in our minds so better to free up the area and breath a little easier. And double bonus – make some extra spending money for our trip! Christian is convinced the States are full of Star Wars men he has never seen before – hopefully Target it not too much of a disappointment for him! Thanks for reading.

Our beach getaway in 8 weeks time

I can't wait to walk along this beach with Chris at night and praise God for all the gifts we have been blessed with

Today I am thankful for:

1.     Airdrie Sway and Buy

2.     Harry Potter

3.     Overcome, by Jeremy Camp

Beach, here comes the Crowells

Goodbye to you

Yesterday we returned home from our semi successful road trip to Edmonton only to have my mother show me the newspaper, more specifically the obituaries. A section I am always afraid to look at because I don’t want to see anymore young faces staring back at me. On Tuesday afternoon a young man by the name of Clayton was looking back at me. He was diagnosed a few months after Christian with the same type of cancer – they battled together. He was 17 years old when he lost his battle to cancer and it has hit me hard. Clayton was a friendly face we would often see in the hallway at hospital. Christian and he were often neighbors and he was always asking how Christian was doing. Clayton would say what a brave little boy Christian was, how strong he was and how he inspired him. So to imagine him gone, I feel such a huge sense of sadness for this earthly loss of a joyous spirit. Somebody who put their own horrible diagnosis aside to ask another little boy how he was doing. So farewell Clayton, I pray you are resting peacefully with the Father.

Awesome storm trooper ballon from "With a twist"

Today is plus 43 only 57 days left until we can leave this nightmarish year behind us. It is very nice to be at home and not travelling to the hospital constantly. Unfortunately I had these unrealistic ideas of what life would be like when we got home. I just assumed we would walk in the doors of our home and life would be great. Well it is true what they tell us at the hospital that the weeks/months right after transplant and discharge are just as difficult and in some respects – more stressful. Nothing will ever be as horrible as watching Christian throwing up mouthfuls of blood and tissue or watching him lay in a bed in the ICU hooked up to a ventilator and numerous pumps. But after we got discharged and sent home I so desperately wanted the journey to come to the end, I wanted to close the book and start a new one. But the chapters but keep going on and on. Every pain, every wince, every, “mommy I don’t feel so well” brings instant shocks of horror and like bile in my throat I a force down the bad thoughts and hold onto God’s promises.

Enjoyed a Flames game courtesy of ticket donations to the ACH

When we first got home we had a huge cornucopia of medications he had to have each day and trying to remember which ones and when was more than my worn out brain could handle. On top of that, the medications seem to make his stomach hurt and vomit would shortly ensue.  He didn’t seem to be eating or drinking as much as he needed to in order sustain himself, this combined with the difficult night feeds led to anxiety levels reaching an all-time high. Thankfully his stomach sorted itself out within a week or so and as of today he has gained almost three pounds! Yahoo.

Lovin the rides at WEM

Unfortunately we had to open another chapter in Christian’s long, drawn out story this weekend. We had been in Edmonton for only a few short hours when we had to make a trip to the hospital because he was in agonizing pain when he tried to pee. 18 hours between urinations, lots of pain medications and some sleepless nights later we have discovered that he has a blockage (you know where!) that is not allowing him to pee without intense pain. So he will require a small day surgery to fix the problem (I will spare you the details but you can probably imagine) and then perhaps we can move on. It seems that there is always one more thing with Christian, nothing is ever clear-cut or as it should be. Not that cancer is following any rules either.

Ryan and Grandpa trying to install a new dishwasher!

This little road trip up to Edmonton to visit my dad was intended to be a warm up vacation for our trip out to the coast. Testing the waters (or Ryan’s tolerance for driving!) so we can prepare ourselves for a much longer drive in a few weeks time. Now I am apprehensive about going because I am thinking if you can end up with a blocked “pee path” then what can’t happen? Trust Trust Trust Trust Trust. I am creating a new mantra for myself so that I can enjoy the days. It is so exhausting to stay upbeat and creative when things are dicey. When Evelyn tears her books to little pieces at night when she can’t sleep. When Ryan throws his food of his tray and yells, “owwww”. When I think I want to just crawl up into a hole and sleep for days – I will think of Clayton, and Christian and Taiya and Diamond and Maxim and Julia and Ty and all the other kids on the oncology ward who don’t have that luxury. Thanks for reading.

Watching for puppies!

Today I am thankful for:

1.     Watching my kids play together in the backyard tonight

2.     Sitting on the couch with my dad at night cause neither of us can sleep

3.     The rides at West Edmonton Mall

4.   Taking the kids to see "The Lorax" courtesy of Jamie's Preschool - watching Evelyn yell in shear terror but not be able to take her eyes off the screen was priceless! Listening to Christian sing, "let it grow" at the end of the movie. What a cool day. 

 

UP AND DOWN

Enjoying home time with the boys!!!!

This blog is so aptly named because it truly explains what our ‘post-hospital’ life has been like. We were officially discharged on Saturday morning (March 10^th – shared with my brothers birthday so I will never forget!) and enjoyed the sunny drive home to Airdrie. We left our room, 1123, after 38 days at the hospital at I will fully admit that I shed a few tears when I hugged our nurse’s goodbye. Since our discharge we have good moments of laughter and tickling and we have horrible moments of screaming and sickness.  I am praying the later will end soon.

Christian and Marc

I am still at a loss for how to properly thank somebody for helping to save my son’s life. I cannot say enough good things about the staff at the ACH, from the nurses, child life specialist to the music teachers. When I told Christian we were done at the hospital, he looked at me and said; does this mean I won’t see Marc anymore? (Marc is the resident music teacher). I am crying right now as I type this because it truly is a loss for him. How do I explain to him that somebody who has brought him so much joy, relaxation and distraction from his pain, will no longer be a part of his days? Even on his sickest day Marc was able to bring a smile to his face just by playing his favorite songs and on his best day he banged the drum along with him while they pounded out the Star Wars music. I am sad that I do not have anything to replace this with. I am sad that I he doesn’t have this constant in his week when he is not feeling well. I can’t run down the hallway and see if Marc is available to play some music for him. I don’t know if I can explain how it feels to lose these things, the things that brought Christian joy. The chemotherapy, NG issues, dressing changes, nausea, testing and the rest of the yucky stuff we won’t miss for a second. But the good stuff, and there is SO much good stuff, will be deeply missed.  

Saying Goodbye

When I wrote my last blog I was reflecting on our vast journey and I was looking back through my 2000 pictures for points of reference. And I found many days that Chris and I would rather not have happened. But the more I looked through the photo’s the more I realized that this past year has brought us some amazing times and opportunities to enjoy life. When people ask me about what we are going through I will often say that it has been the worst year of my life and also the best year of my life. Sounds kind of weird but we have been given such an amazing gift of growth and clarity for the fragility of life. Lessons that cannot be taught – they must be experienced. I cannot explain to somebody else what it feels like to lay in bed and look at your son sleeping beside you, skinny and sick, and wonder if you have the strength to let them go. I can’t verbalize the horrible feeling I had in my stomach on the nights I wasn’t sure he was going to make it. But today we have hope in our lives and excitement as we plan our immediate future. Excitement that is heightened because we fully embrace the realism that today IS A GIFT. You cannot have today back. You do not get another chance to say I love you, or cuddle with your two year old because tomorrow your kids will be grown and gone and you might wonder why you didn’t lay with them and read them another story when they asked (even if it’s a stall tactic as it always is!) You won’t miss that money that you won’t earn while you spend more time with your kids.

Our 'board' the day we left

I am trying to learn to have peace in my heart, even when discord is all around me. I want to be able to look at a person who is angry and instead of getting defensive try to see where they are coming from…how they have been hurt. I just want to live each day with some measure of stillness and peace. I want to stop and take time to read my kids stories, play games with them, be silly with them, get in the tub with them and hide under the sheets with them.

This past year we went on many trips to Canmore, even if just for a few hours, to throw rocks in the water at the base of a mountain. Play in a playground surrounded by such immense beauty it still takes my breath away. I love looking back at my photo’s of our pizza picnics in the park, even with a bald little Christian trucking along. The day we drove home from the hospital it was so beautiful Evelyn said, “What a great day for pizza in the park”. I was astounded that she had been so affected by these outings, days that costs us nothing more than $10 for our pizza.

Nurse Elly and the kids

Jamie’s Preschool has been another blessing for our family. Although we have only been able to attend the preschool a few times (as Christian always seemed to be sick) the women who organize the school have hearts of gold and immediately our family developed a tight bond with them. Christian and Evelyn enjoyed the first outing to Callaway Park, the trip to Canmore, the gymnastics at Stars gymnastics club and of course class held me Mrs. Tiffany Howe.  We will never forget the day we almost killed long serving teacher, Mrs. Mackie, with Christian’s peanut butter sandwich! – oops.

Christian enjoying gym time at preschool

We have been able to meet so many amazing people in our own community, people who supported us even though they had never met us before. People who prayed for Christian and prayed for our family. Meeting the Phaneuf family (whose son Jayden is also fighting his own cancer battle) whose church has now become our home church. Gathering with this amazing family has literally saved mine and Chris’ spiritual life and our marriage. A life changing friendship that would have never happened had it not being for cancer.

Having the opportunity to have Chris’ extended family come and stay with us numerous times has been such a blessing. Especially for Evelyn and Ryan who have created such an amazing bond with their Nanny Marilyn and Papa Norm. Evelyn asked her papa today on the phone (from Nova Scotia), “Papa are you coming home soon – I want to play puppets with you?” Feeling the support from your family when things are really upside down and knowing they will do whatever has to be done to help.

Our family vacation to Nova Scotia, the Jason Jaffray Golf tournament, street hockey with the cousins, and many more memories will be just as big and memorable as the year Christian had cancer.

Them's are some tired eyes... i think i need the spa.....!

Today Christian is doing ok. He quite skinny and we are working hard to get some more weight onto his body. He needs chub, strength, balance and energy. This will all come with time, which we have plenty of. His tummy continues to be sore from the massive onslaught this past year has served him. And I imagine it will be a while before he is able to eat, as we want him to. So I am so thankful for the NG tube (even though it gives him nightmares!) We are trying to enjoy the lengthening days, the sun and the opportunities to be at home together. Our hope is to make a trip to the west coast in the next month (if we are allowed!) then to the beach once Christian has his strength up. Thank you for your continued prayers.

Today I am thankful for:

1.     Ikea Hot dogs

2.     Taking off tight pants and putting on loungers at the end of the day

3.     Zumba

REMISSION

Christian showing me how much he loves me!

This past week as we near the culmination of our journey I have found myself in constant reflection. Excited about the future, a little scared to leave behind what we know so well and a tad apprehensive about what could possibly lay ahead. As much as I promised myself I would not think about it, I don’t think I would be human, or at least a mother if I didn’t have some anxiety about Christian’s future. Every three months for the next three years he will have a CT scan. A scan looking for the regression of his cancer. A scan, as one doctor put it, which would show signs of the beginning of the end. This is a dark thought and one that rarely occupies my mind. But late at night when I can’t sleep or when I lay beside him in bed at night and watch him sleep I wonder for how much long do we get to keep him – forever? Thankfully I have the words of a good friend that roam in my head, “who said we were guaranteed another day with any of our kids, or family members for that matter?” So even though Christian will forever be at risk I know that life is short for all of us and the risk of losing somebody before their time is always there. So I am going to try my best not to dwell on the future but enjoy the present. I refer to some of my favorite bible passages to guide my head with my anxiety and worry, to provide some peace and reassurance in my heart.

Matthew 6:34

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own

Philippians 4:6-7

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

Day before cancer diagnosis

So here we are ready to hit the road, say our goodbyes in the unit and jump in our van and make the trek back to Airdrie to live in our house together as a family – finally. I think about the day Christian was diagnosed. I remember that night like it was yesterday. Taking him into the ER and not even getting the chance to sit down in the waiting room as they whisked him back to be seen. Sleeping in the lazy boy chair in his room while we waited till morning for his ultrasound. Hearing some random doctor tell me that “I am sorry but it looks like cancer”. I can hear the fear in Chris’ voice when I had to call and tell him to come to the hospital, “Megan, please tell me what it is”. Making the move over to unit 1 (that I didn’t actually understand was the oncology ward for some time!) and meeting the soft and caring faces of the staff there. I remember spending some dark nights with nurse Courtney who was so reassuring, I remember her the question…is he going to die? I will never forget her face or her words. I remember the morning we waited for the results of his bone marrow biopsy – Chris was standing outside in rounds and I was trying to lip read to hear if his cancer had metastasized. So many intense moments in those first weeks.

One week after diagnosis

I distinctly remember watching the chemotherapy drip down into his lines for his first round of chemotherapy. I was thinking ok here we go this is it. I wondered how long before he would get sick and how long before his hair falls out? Thinking it was so surreal that we were doing this.  It was like I was playing a part on TV of a mother with her sick child. This couldn’t possibly be real. I remember when his hair started to fall out when we were at our radiation scan. The first few strands left on a pillow made cancer that much more of a reality. There is no hiding the meaning behind his bald head. I remember that Christian didn’t want to cut his hair when it started to fall out so I made a deal with him so that hair wouldn’t end up everywhere! I cut a few pieces of his hair then he cut a few pieces of mine.

Radiation was scary

Then things smoothed out, his tumor shrunk and life got a bit easier to deal with. Then radiation started and it was like we were starting all over again. Every morning from Monday to Friday we went to the Tom Baker where Christian was put to sleep so he could receive his dose of radiation. The day I went in to see the machine and look at his body cast – the room was so dark and he was so limp in his cast. His arms and legs splayed out and his abdomen completely exposed and vulnerable. Like we were playing a trick on him while he was sleeping. I remember it rained many of the days we were there and Christian would often complain he was cold. He would eat banana muffins and strawberry filled Timbits after he woke up. He was such a sweetie he won the hearts of all the staff there at the radiation department. 

Halifax Harbour

I remember how amazing it was to go to Nova Scotia for a few weeks in the summer time. I would run through Victoria park and think to myself that this was what normal life used to feel like. Being outdoors, letting kids play together, not running to the hospital every second day. But shortly after we got home his ability to eat and his tummy pains progressed until they decided to do a CT scan to see what was going on. Sure enough his tumor had regressed. We were only 9 weeks from finishing his whole treatment. When first diagnosed percentages and numbers are thrown around for odds of survival. 70% they said….and at the time I wondered who where going to be the unlucky ones? Which of the three kids of out 10 were not going to make it? And now the nightmare had come true. We had moved down into the 30% category.

Chemo in the clinic

Four days after surgery

Fast forward a few weeks to Christians 12 hour resection surgery. Dr. Mary Brindle and a team of about 6 other surgeons saved Christians life that day. Because they didn’t leave any visible cancer cells behind we were ready to fight again. The devil has made so many attempts to take Christian from us but God continues to give us the resources we need to keep him here with us. Resources like chemotherapy, radiation, Dr. Mary Brindle, Dr. Baudry, stem cell transplants and the Alberta Children’s hospital. First he tried cancer but God gave us Dr. Victor Lewis and chemotherapy. Then he tried regression but God gave us Dr. Brindle and donor blood vessels. Then he though he would try to take away his ability to breath with a failed extubation but Dr. Megan Mahoney got him reintubated again. He thought he would try his hand at starvation and a bowel obstruction but God gave us Dr. Baudry who performed an emergency surgery at 2:00am on December 10^th. God gave us the infectious disease control who helped Christian battle infection while he was neutropeonic after the emergency surgery. Then he tried to derail our attempts at stem cell transplant but God used the distraction to get Christian to the best weight possible. Satan tried to take out our ability to support Christian while waiting for his engraftment after stem cell transplant with Chris getting sick and not being able to come to the hospital. But all that he did was strengthen my bond with Christian and my ability to communicate with the nurses and doctors on the unit. So it is easy to see that every effort was made to take him from us but God overcame and literally delivered Christian back to us. Just as He promised,  Jesus never took Christian, Chris or I off of his shoulders. Times when I shouldn’t have been able to function he carried both of us.

After emergency surgery

As I write these words I lay in my bed with Christian snuggled beside me for the first time after 36 straight days in the hospital.

After:

60 weeks of treatment

45 rounds of chemotherapy

28 days of radiation

430 needles

One 12 hour tumor resection surgery

One emergency bowel obstruction surgery

26 blood transfusions

9 platelet transfusions

30,606 kilometers driven to and fro the hospital

Today he is cancer free and in remission

Love from nanny and nanny

There is nothing else left to say except we have to give utmost praise and glory to our God in heaven for giving us the strength we needed to get through this trial. Praise to God for keeping us unyielding as a married couple and allowing us to learn and grow through our difficult times. Praise to God for helping us to see the good when things are bad. Praise to God for Christian coming home to be with us. Praise to God.

Today I am thankful for:

1.     Jayden Phaneuf being declared cancer free and in remission

2.     Watching Evelyn, Christian and Ryan all kneeling around the toy bin to play this afternoon

3.     Ginger ale and orange juice mixed together