God's Hands

I am not sure where to start. I always find writing my blog easy and the words just seem to flow out of me like they are coming from a deeper source. Sometimes I go back and read my blogs and I wonder who wrote those words because I don’t remember writing them.

Today, as some of you may already know, Christian had a scan to help us try and sort out some of his tummy troubles. Within hours of writing my last blog (tuesday night) Chris, Christian and I made a 1:00am dash to the hospital with Christian screaming in pain. It was very scary and I felt very helpless. However 30 minutes into our drive he fell asleep and seem quite calm and pain free. In fact on the drive home from the hospital at 4:00am we had to stop at McDonalds for some French fries and ketchup, at his insistence! When we got home he ate almost the whole lot and drifted off into sleep. 

So we had a scan today, almost 9 weeks earlier than planned, so that we could figure out exactly what to do to help him feel better. I since have spoken with Christian’s oncologist. We were told that the tumor area is larger than it was in his most recent last scan. He was quick to point of that this could be for many reasons. Firstly the tumor appears to be full of fluid. This is the good scenario that would mostly likely mean the tumor is already a dead mass with a hollow centre and swelling as a result of the tissues dying off. Or it maybe that a blood vessel has bled into the tumor. Also a fine scenario. The not fine scenario is that the tumor has developed a resistance to his chemotherapy treatments. 

We spoke very briefly on the phone so I don’t’ really know the whole picture but I think the main consensus, and there are many more professionals who will be involved in future planning, is that Christian needs to have his tumor removed. They need to do this in order to determine what EXACTLY and accurately is going on inside Christian’s body. The surgery is very complicated, as it will require Christian being put on a heart/lung bypass machine while they graft in a new vessel where his tumor is lodged into his current vessel.  A bit scary, A lot scary. Now more than ever we need prayers to stream forth so that we can have healing, safe and effective surgery and an optimal tumor prognosis (which will occur once the tumor is outside his body).  I am at a loss for words tonight except to say that Chris and I are trying our best to put this in God’s hands and let Him take hold of the reigns. We will try to find the good in this situation – even though the scenario is beyond terrifying for Chris and I. Surgery will most likely happen within the next week or two. I will try to update the blog as we learn more details. As I type this Christian is talking about finishing his chemo so that he can go to Nova Scotia and go somewhere warm so he can go golfing with daddy. Please pray……..

DS with Everett - awesome!

Today I am thankful for:

1.     Midnight trips to Wallmart with Christian in his red jammies for chips and ice cream

2.     My back feeling better

3.     Hands of prayer – thanks Loralie

Ryan being a good helper!?

BROKEN BUT BLESSED

Tough time recovering from Chemo       

You have to have the rain to grow the flowers, you have to be down in order to go up, you have to see the cloud to know the sun. Call them cliché but its true. You don’t know what you have until it is gone and you can’t really appreciate the good times until you have known bad times. And I have been broken this week. Broken in my body and broken in my soul. For some random reason my back went on strike starting the night Christian was admitted to hospital. I tried to get up in the middle of the night and got ‘stuck’ trying to put Ryan back into his crib and ended up dropping him onto the crib mattress– thankfully kids are pliable! Anyways, many hours later and some seriously embarrassing bathroom moments, and I was officially out of commission. I was completely at the mercy of anything below my waist, which basically means all of my children along with anything that was on the ground. Since then either Christian or Evelyn has had to help me get my shorts on each morning and thank the Lord for mothers because I would have been in some big doo doo without my mom being here to help me. Chris left for work on Monday morning and by noon mom and I are wondering where we could hire a nanny! And Cousin Julie to the rescue! I have never had a daytime helper before but wow! What a great invention. Now to win the lottery so I can hire her full time!

Is there anything better than Batman playing Wii?

Anyways back to my point of finding the blessings in bad times….these past few days while I have been crippled like I never understood before….I have renewed my sense of appreciation for the small things in my life. One of the things I have missed the most is picking up Ryan when he reaches his little hands up to me and says, “Mommee”. Or in the mornings when Christian says who is going to cuddle with me? Knowing full well that horizontal is not an option for me. How about being able to put on your own underwear or sleep (horizontal!) in your bed? These are just a few of the things I have missed so much this week.

Cruising Unit 1 as Batman

We spent the better part of last week in the hospital while Christian battled a fever. Wednesday night Christian and I headed to the hospital and we were directed to our room, room #1116 – our original room. And I felt kind of funny walking in there – like it was January 2010 all over again. It was late at night when we got to the hospital so it was dark and chilly. Once Christian was settled into his bed, comfy and cozy, I went over and looked out the window and I felt a chill go up my spine. It was the exact same view that Chris and I looked at every night when Christian was first diagnosed. But this look back in time also gave me some levity as to how far we have come, how hard Christians has fought, how much we have given over and how much new appreciation we have for our lives. The small things in life - being able to put on your own socks and the grand things in life– looking your son’s eyes and hearing him say he loves me “this much”.

Games in the sunshine room

And I seem to also find God in this way. We all do. When things are really bad – this is when we look to Him for help. Not until we are at rock bottom and realized that we are ‘tapped out’ do we start looking up. And because God is faithful He is waiting to reach His Hands down and show us love, compassion and hope. So even though my body is broken I know that I am blessed. Blessed because I have family that is helping me, blessed because I have friends that are praying for us, blessed because I have beautiful children and blessed because I have a God that loves me and is faithful. A good friend reminded me yesterday that our God is faithfull and WANTS to give good gifts to us. So tonight I rest with the thought that God is looking after Christian and my back and the rest of my family. I rest knowing that despite the ups and downs of Christian’s treatments that ‘it is done’. The price is paid and the way is paved.  

Blood transfusion # 12 - could this be your blood?

Christians blood type - O Negative

We are having a delay this week in Christian’s chemotherapy treatments because he was ill last week. So he will be doing his small chemo on Friday – 9 weeks remaining and four more chemo treatments. Wow. I can’t believe we are almost there. I am a little afraid; ok I am a lot afraid of what our life will look like when we are done – but that is another whole blog! Christian is also going to be having another CT scan on Friday because he has been having some random and weird tummy pain that doesn’t seem to be responding the Doctor’s treatments. So please pray that the tumor has continued to shrink – and that it has rescinded from his inferior vena cava. Please pray that the tumor is not interfering with the proper functioning of his organs.  Please pray for Christian for strength for the last few months of treatment. And please pray that Chris and I can continue to grow and mature as parents and partners. Thanks for reading.

Recovering in room 1116

Today I am thankful for:

1.     VERY strong muscle relaxants

2.     Eating my first calzone

3.     Smelling Ryan’s skin and hearing his belly laugh when he is tickled

4.     Chris jumping into a very large tub and saying “I’m in”

Fevers, Pillows and Smurfs!

Hanging in 'our original room' 1116 eating popsicles - yum

Love our new pillows

Today is Friday – I think.  My brain seems to have decided to take a vacation before my body could join. Or maybe a revolt? Anyways it’s defunct – my brain that it!  Wednesday we took an amazing trip out to Kananaskis with Jamie’s Preschool. We boarded the luxurious Tim Hortons bus and made our way out to the Delta Lodge where we were hosted by the Kananaskis Fire and Rescue crew. We mostly hung out, played some soccer, made a small craft and walked a little bit (and I mean a little bit since neither Evelyn nor Christian seemed to keen on moving themselves!) They had a BBQ lunch and followed up with a bonfire complete with Caramilk smores. Yum. The kids were only moderately thrilled to be there as we all seemed to be lacking in energy and enthusiasm. And I was definitely lacking in patience. Those also seemed to have taken a vacation without my permission. Just before we boarded the bus, one of the lovely hostesses, an older bird by the name of Moira, had a room full of body pillows that each child got to pick a colour of their choice and take home. It was such a cute touch and a remarkable example of how a small gesture can change the outcome of a whole day. The kids were elated and promptly feel asleep on their new body pillows while on route home. 

 

Unfortunately just after supper Christian came down with a high fever and we made the all to familiar trek to the Children’s Hospital so he could be admitted to receive a few doses of antibiotics. He was to receive his ‘big’ chemotherapy on Thursday but due to the unyielding fever we have been delayed until this afternoon – hopefully. So all is well for now and Christian has been enjoying his time in the unit since he is not in isolation. Last night we took a ride on his IV pole through the unit with him dressed up as batman. He loves being the star of the show! 

It has been a bit dicey for Chris trying to organize his life with going back to school and trying to manage his classroom (adorned with 21 little different personalities) and his life at home and now his life at the hospital. Please pray for him and continue to pray for our other oncology family whose son has a terminal diagnosis but seems to be making great strides in improving his quality of life.  

That is all for now. Thanks for reading.

Today I am thankful for:

1.     Sesame Street

2.     Warm fall days

3.     Having Smurf bathtub wars with Christian in ‘our room’ 1116

Enjoying the pond at the Lodge

Grammy and Ryan checking out the fire truck

            

THANKFUL

Christian's Soft Foot

Sitting in bed tonight watching When Harry Met Sally (and come on for all you saps out there – you know you love it!) feeling the bottom of Christian’s soft feet touching my leg I am thinking of all the things I am thankful for. Firstly I am thankful that there is not much to write about. No sudden trips to the hospital. No fevers or big pokes. Not too many tears and lots of smiles and golf. All in all this turned out to be a good week for Christian and the rest of the clan. Christian continues to battle the sewer pipes and Chris and I continue to battle the ‘what if’ scenario. The whole idea of giving it away and trusting in God is so difficult and a daily fracas. But tonight in my quiet dark room, on my soft bed with a sweet movie playing and Christian’s warm body beside me I am thankful. Thankful for many things…..

Our first night in England 2006

1.

1.  The softness of the bottom of my kids feet (and feeling their warmth on my skin)

2.     Warm soft beds with lots of pillows

3.     The comfort of movies you can watch over and over – ahem…thank you Meg Ryan

4.     Reconnecting with old friends – thank you Kirsten

5.     Cool design magazines

6.     Outings with just Evelyn (and her ‘lots and lots’ of babies)

7.     Comfort food – yummy pasta pot

8.     Fireplaces on cool evening

9.     Coffee after supper

10. Paul Brandt music

11. The amazing places Chris and I have been able to travel together

12. Finding something really cool in the AS IS section at Ikea

13. Chocolate cake

14. All you can eat shrimp at Red Lobster

15. The feeling your legs have after a great run

Chris and I at Dieppe

Big chemo this week, Monday hopefully if we can get our schedule worked out with the hospital. Big field trip to Kananaskis with Jamie’s Preschool on Wednesday and recover the rest of the week.

This is what Christian thinks of Cancer

9 weeks to go, 5 rounds of chemo, 1 re-grading scan, 1 surgery to remove chest tubes, and HOPEFULLY one amazing “Stuff it to cancer” family vacation. Hawaii anyone? 

My favorite things - together

I Remember.....

Looking to the heavens

We officially survived the first two weeks of September with Chris back at work. Not without a few mishaps but generally unscathed. Of course I had to get sick (its almost winter isn’t it?!) I don’t remember the last time I have been this tired – perhaps it would have been when Christian was first diagnosed. I remember that Ryan was just a little baby and still nursing frequently. I remember Marilyn (Chris’ mom) trying to sooth Ryan over night while I stayed at the hospital with Christian. I think that was the last time I left him overnight. Poor Marilyn was exhausted after Ryan spent the better part of the night waking her up and refusing to drink. The next few nights I spent in the family room at the hospital with Ryan while we waited for his final diagnosis. I remember wanting to be at the hospital all the time and for sure in the mornings so that we could listen to rounds. That was one of the things I appreciated the most about the Children’s hospital – there are no secrets. You can listen to rounds outside of your child’s room every morning. And they didn’t sugar coat anything – which I appreciated since I am detail type person. I remember having to go up to the library in the hospital and read up on the chemotherapy drugs so that I would understand EXACTLY how the tumor was going to meet its end. It helped me to visualize his healing and better understand the side effects he would be feeling. I remember being afraid to read the next lines in case it was something that I just didn’t want to know.  I didn’t want to read about survival chances or what different stages or different locations meant for Christian – but I did read it. I read it all. I had too. I still remember the morning Chris and I were in Christian’s hospital room (I think mom and Aunty Vivian had Ryan out for a walk) and we were waiting for the final results from his bone marrow test (which would determine whether he was a stage 3 or a stage 4). This test literally meant the world to us as it change Christian’s chances for survival, it changes his course of chemo and his chances for a relapse. Anyways I was with Christian in the room and Chris was listening to rounds. I was trying to read the Dr’s lips from my chair. Chris opened the door to tell me his bone marrow was clear and I felt the most amazing sense of relief. I think it was truly the first time I had hope for Christian’s future. Until this point I was preparing to have to let him go. I called Marilyn at home immediately and I can still hear her voice crying on the other end of the line as she screamed to Aunty Janice, “His bone marrow is clear”.  It was a great day amongst days that were not so good. 

Thank you cousin Molly for the Smurfs - hospital favorite!

During these first few days I really struggled with prayer. There is so much truth in “being careful what you wish for because you never know how God will answer your prayers”. I remember when Chris and I were first married and somebody told me that it was good to pray to God to show you how to love your husband more.  Two months later we lost our first child with a difficult pre term birth. I had no idea how difficult the first year of our married life would be but in truth it did teach me to love and trust Chris more than I thought I ever could. I would have never gotten though those tough days, weeks and months without his support. Anyone who knows me knows that I have a difficult time asking for help – but boy did I need help then and I need help now.  I need help from God to get me through these really tough times. I am not afraid to pray but I am very specific in my prayer. At one point I remember asking myself why bother with prayer? If God’s plan for Christian is to have him –then he will. A good friend of mine, Loralie, then reminded me that God wants us to ask for help. He wants a relationship with us. Then she shared the store of the little boy in the book, “Heaven is for real”. Prayer made a difference for his family and it is making a difference in ours. I know that so many people were praying for Christian while we were waiting for his bone marrow diagnosis. I could feel it. Thanks Joan for your amazing prayer story.

I continue to need help from my family so that I know I am loved and accepted. I need help from my friends who will love me even when nobody else wants to. Anybody who has gone through difficult situations in their life will tell you all they need in crisis is to be validated. So thank you to everybody who has spent some time in our shoes and watched how difficult things can be for Christian and our family and have said, “ I see what your going through and I am sorry”. I know a lot of people don’t know what to say in times of crisis– which is understandable. Dare to live in somebody else’s difficult shoes for a while. And Chris and I are not exempt from this. We have met a very amazing family at the Children’s hospital whose son also has cancer and they have a fatal diagnosis. They are waiting to say goodbye to their son. I struggle when I talk to the mom for good things to say. I ask about her son and how they are holding up. They have very little support and are so burden by the load they are carrying. I put out a request to everybody reading this blog to send a prayer for this family. 

Spiderman doesn't stand a chance!

Well this blog is not about what I thought it was going to be about but what comes out of my fingers just comes out. I wanted to say thank you to everybody who came to Chris and Christian’s birthday celebration on Friday. We got some amazing things for the hospital and had a great time to boot! Thanks SO MUCH to Marilyn and Bob for making the surprise weekend and bringing Spiderman with you! You guys made the weekend extra special. On a side note I am so disappointed with some people (or their kids!) - no thank you’s will be give out the person who relieved Christian of his brand new DS that he got from Papa Norm and Margie while we were at the Children’s hospital. Boo.  Thanks for reading

But there are MANY other things to be thankful for. 

Today I am thankful for:

1.     An empty bench at the mall when your legs are tired

2.     Quiet supper out with my Husband….Yum

3.     Spiderman Piñatas

Mrs. Howe and Christian celebrating his birthday at school

Happy Birthday Chris!

Skin time with Christina (2007)

Wow 10 years ago.

It is the dawn of the celebration. Ok it is actually the dusk before the dawn but there is no way i am getting onto a computer while my kids are awake. I have to admit that lately it has been a tough choice between sleep and blogging. I am very sorry to say that sleep, housework, and baking copious amounts of cupcakes has taken priority – so i apologize to those of you who feel neglected! That being said i am so glad you come back to read each time.  Chris heading back into the classroom has sent our whole family for a loop; a loop with a triple swirl and a cherry on top. And nobody is more confused than poor Evelyn. She just can’t seem to grasp all the moving around and changes. She keeps asking to “go home”  - which wouldn’t be so horrible if we weren’t already at home when she says it! I ask her were her home is and she says, “I don’t know”. She had such a good time in Nova Scotia and was completely spoiled with Aunty Sarah’s time (in a good way!) and I can tell she misses all of her cousins and relatives horribly. She asks on a daily basis, “Where is  Sarah? Nick? Molly? Maddy? Nanny? Daniel?

First day of Preschool

Our household has been nutty with everything that this week has delivered from chemo to Chris starting work to the birthday open house and of course Christian having his first day of preschool today. Which he absolutely loved despite the fact he had a peanut butter sandwich for lunch and just about sent his teacher into an anaphylactic shock. Ok lesson learned – no peanuts at school. (gimme a break this was my first day as a parent with a child in school – you would think i should have learned from Chris being  a grade one teacher but apparently not!) Evan and Christian had a blast and i know it will be good for both of them to have some structure.

Tomorrow is also Chris’ 32^nd Birthday. I met Chris 10 years ago and it is amazing how much can change in a decade. When I met him he was a typical hockey player (sorry to those of you out there bucking the pigeon hole trend) – Cavorting with the hockey boys, 20 dollars to his name and of course actually attending university classes was optional, right? Well 10 years later he is the most disciplined, loyal, dedicated, loving, hardworking, respectful, and funny man i have ever met.  Life has not been a bowl of roses for Chris and I and we seem to have hung in there together despite the things that have been tossed in our path.  Love you Chris – the original circle.

Happy Birthday Daddy!

And the most lovely surprise of all when we arrived home today from our shopping trip to IKEA (my kids can’t get enough of those hot dogs and i will use any excuse to go for a shopping trip!), was my mothers good friend, Marilyn Sharples (and Bob). Whom surprised us by driving out from Vancouver to celebrate Christians most special day tomorrow. They are the kind of people who just light up the room and put a smile on your face. Sooooo glad they are here!

Marilyn and Marilyn - what a pair!

Birthday Celebrations at preschool

So finally to the bones of the blog – tomorrow is open house day. Starting a 3 pm at our house in Coopers . We welcome anybody to come and celebrate with us. We are so proud that Christian has fought hard and we are now going to enjoy his 4year birthday party. We want to say thank you to all of our friends and strangers alike who have supported our family through this very difficult time. Please come by and say hello to Christian and have a cupcake! We are so blessed to live in this amazing community and have the friends that we do. We hope to see you tomorrow. Please remember no gifts – if you would like to bring something to honour Christian’s fight then we are welcoming kids and teen movies (dvd) and gift certificate (any type) donations for the Oncology Ward at the Children’s hospital and the Ronald McDonald house. There are many parents and children in our Oncology family who are not as blessed as we are and we hope to pay it forward to these families. Thanks for reading.

Chemo with the gang - that's the way to go!

Today i am thankful for:

1. Jamie's Preschool (special school for immune compromised kids)

2. Surprise visit from great friends

3. Evelyn crawling into grammy's bed to fall asleep

HAPPY BIRTHDAY CHRISTIAN!!!

Christian at four months

Christian at four years

Four years of age. Who would have ever thought that a four year olds birthday would mean so much? Seven months ago I was uncertain as to whether or not Christian would even live to his fourth year. But now we have hope for the future – hope for Christian’s future. Each day his strength, courage, understanding and gentle heart continue to astound Chris and I. We are so blessed to have this amazing family and Christian helps to make it just so. Ironic that we are celebrating this milestone birthday in the same month that honors Childhood Cancer. Yes, September is Pediatric Cancer Awareness month – Gold Ribbon is the color of choice.

We are frequently reminded of the fragility of life, and not just Christians. We are not guaranteed another year with him or Evelyn or Ryan or each other. So we attempt (and I mean attempt) to love each other whole-heartedly and make the best of our marriage.  I pray that the issues that come to light as a result of Christian’s illness will be dealt with and will make us a stronger couple and family. Stronger in our faith and grounded in the true essentials of a loving and giving life.

"Helped" Daddy get his 2nd degree- what a year!

First Birthday

Now that we are back at school and work and hospital and everything else that customarily goes on in the fall I cautiously attack my days with the most normalcy I can. I am amazed at how much I crave structure and the ongoings of an average life. But then I must remember that our lives are no longer run of the mill. We will constantly be waiting and wondering for the next test and results. Many of the families we have met in the Oncology ward say that life will never be normal again and I wonder how I will cope with this. Will it be a blessing and allow us a clear picture of the true ‘essentials’ of life? Or will I be always looking at other families in the park and wonder if they have any idea how luck they are to be ‘normal’. Then again perhaps we are the lucky ones.

Best Big Brother EVER! - Evan at two days

Regardless I am so proud of Christian for how hard he has fought, the strength he has shown both physically and emotionally. I am so proud that he can teach both Chris and I lessons in patience and understanding. I am honored to be Christian’s mother. I am honored that I get to be the one who cuddles him at night and the one he longs to be with. This is a gift of motherhood.

He is so sweet and thoughtful. He will often come over and rub your back or your head if he thinks you are not feeling well. He often tells Chris and I that we don’t “need to worry” when we are having a heated discussion. He reminds us that it “doesn’t really matter” and “it can be fixed or cleaned up”. He truly is peace in my heart and love to very bottom of my toes. When he is sleeping at night and I quietly rub his bald, soft little head I wonder how is it possible to love someone this much.  Loving him reminds me of the love that God must have for us. A love we can not dream up. The Beatles certainly got the truth down to the core. All you need is love. Thanks for reading

Today I am thankful for:

1.     A nicely painted bright and colorful front door

2.     The noises Christian makes when he sleeps (somewhere between a sigh and a snore!)

3.     Watching Ryan dancing

Still the best big brother ever....Ryan at five days

HAPPY BIRTHDAY TO THE MOST SPECIAL FOUR YEAR OLD 

Three weeks before diagnosis

CHRISTIAN'S TIDBITS

-       loved to cuddle since the minute he was born

-       loves to sleep sucked right up beside someone and will often reach out to make sure he can touch someone else’ skin

-       Loves to make sure everyone is happy

-       Is the world’s BEST helper (with Grandpa building, with mommy or Grammy cooking, with daddy and his hockey sticks) & anybody who is doing any kind of work with have an automatic helper!

-       Loves to be silly and call someone he loves a chicken but!

-       Has a crazy tongue he can turn upside down

-       Loves golf and I think hockey was his first word

-       Loves swimming, bath time

-       Loves music and dancing

I will never forget those sweet little toes......