Used to what?

Christian displaying his new sleepy eye

A new calm seems to have come over our house. I know that many parents told Chris and I when Christian was first diagnosed that things will get better, or maybe they said we would get ‘used to it’.  So I guess we have gotten used to it. Whatever IT is. Is it getting used to giving my son needles everyday? Is it getting used to cleaning the tubes coming out of his chest? I have gotten used to telling him to wash his hands everywhere we go and Christian has gotten used to me telling him not to touch anything or anybody.  Is it getting used to the disappointment in his face when he realizes its medicine time or is it getting used to the weekly trips to the hospital?  Sometimes life seems so normal then WHAMMOOOO you realize nothing is as it was and probably will never be again.   Tonight after we had dinner (thanks Margie) we decided to take Evelyn and Ryan for a swim – trying to lure them to sleep! So I spoke in Evelyn’s direction, “Do you want to go to the pool?” And Christian looked at me and said, “I want to go to the pool.” The saddest part about it was that he already knew the answer and was defeated before he even finished his sentence. I realized right then and there that there would be some things I will NEVER get used to.

I feel sad when I think that this is how he is going to spend his third year of life.  A time when I expected to be signing him up for preschool and watching him stretch out and become a little boy. Well preschool is certainly out of the picture but curiously he is still becoming the most amazing little boy. He loves his brother and sister to death and he has such courage and understanding.  Maybe these are some of the lessons that he was meant to learn this year. A different sort of preschool. We will call it prelife…..lessons that I pray he takes to adulthood. Lessons I hope he can use to better himself and the people he surrounds himself with. Lessons we are all still trying to figure out as adults.

So this calm in our house is real but I fear it is the calm before the storm as we look ahead to his cancer restaging CT scan. As we look forward to his daily radiation and the potential for a surgery.  I have accepted this new life, its different but its ours so I'll take it.

Crowell family at the "Top of the World"

Craziest 2 year old in the books

Today I am thankful for:

1.                 1. Chocolate cake

2.                 2.  Warm spring days

3.                  3 The fresh smell of my kids skin after being out for a walk

Ryan loved his first spring walk

Smashing of families

We have had a wonderful time this month with Norman and Margie in our home. It has been such a blessing to have so much help from our families. Christian and Evelyn have had a really good chance to bond with them and develop a trusting relationship. I have always thought it was such a special gift when you knew that somebody loved your kids as much as you did (if that’s possible!)  I feel that anytime you can add people to the tally of 'people who truly love your children' -  you are contributing to your kid's self esteem and confidence as they realize how special they are and how much their little lives matter. So this is a quick thank you to everybody who has spent time to get to know Christian, Evelyn and Ryan, especially over these past two months. Tonight we had some fantastic steak BBQ – by Norman – and even though it may not seem like much it helps us to have a feeling of normalcy when some days just don’t feel normal at all.

Jayden and Christian playing Super Mario in the HOT clinic

Speaking of special people, Chris and I are often amazed at the way the God brings people into our lives. You might not understand it at the time of meeting but it will at some point become obvious to us -  His plan.  This became quite apparent to us on one of our first days at the clinic, in fact I think it might have been our first time in the clinic, where Christian gets his 'small' chemotherapy. We were kind of sitting there in a daze not sure what to do when I hear a man say, “Are you the Crowell’s?” And I am thinking that word sure travels fast and he proceeds to tell us that his church has been praying for our family. So here is this man that I have never seen before saying he has been praying for Christian and I look down and there is a sweet little fuzzyheaded boy sitting in a wheelchair. He says this is my son, Jayden. I cannot believe that this man whom obviously also has a son sick with cancer has been thinking of and praying for us.

 If you have read the previous blogs I have explained a little bit about Christians cancer, rhabdomysarrcoma, which is a very rare childhood cancer (less than 4% I believe) so it amounts to only around 200 cases a year in Canada.  So because we are ‘newbies’ on the Oncology ward at the ACH you spend a lot of time asking people the same questions. What kind of cancer does your son/daughter have? What kind of treatment are you doing? How have their side effects been? How long since you were diagnosed? So I starting into the standard 20 questions of meeting a new parent on the ward and I ask Doug what kind of cancer Jayden has and he says a cancer very similar to the one Christian has. He tells me Jayden was diagnosed just before Christmas and that he is just a little older than Christian.  He is the pastor at a local Airdrie church and Christian’s name ended up on his prayer list. And we ended up in the clinic on the same day at the same time. Talking about our two boys, almost the same age, similar type of cancer, same time and same town – this is no coincidence. God just wanted us to be friends.  On Friday Norman is looking through the local paper to find a church that he wants to go to on Sunday and he points one out to Chris, “How about this one?” And I am sure you know the rest of the story – Doug’s church. God works in wondrous ways. So the Phaneuf family has found a place into our hearts and they inspire us with their uplifting spirit and gracious attitude. They are amazing family for thinking of others when they had so much of their own to deal with. We are blessed to have been smashed together with them and you truly never know how God is working in your life till you let Him lead. 

Ryan - naturally cool!

One of Chris’ colleagues came over to the house early on in our debacle and brought us a special book about gratitude. It has a space to write each day a few things that you are thankful for. So from now on I will end my blog with a few things I am thankful for.

1.     Christian’s excellent dance moves that he has been practicing for the upcoming kids dance

2.     Ryan being such a good natured and relaxed baby

3.   Evelyn doing her midnight jammie changes...they drive us crazy but we will remember it forever

Evan - natually nuts!

Nighty night and don't forget to register to become a possible bone marrow donor  at www.onematch.ca. Thank you for honouring Christian's fight. 

Central lines and such....

January 2011

Yesterday I was working on the slide show for our Bone Marrow awareness night when I was struck with how much Christian has grown and developed in the little time that this has all transpired. I sometimes forget that this is going to be such a long process that we need to continue to nuture his growth and development or else before we know it he will be four and a half!  We looked at one picture when Christian was first diagnosed at the end of January and then another picture taken last week (a short 8 weeks later) and it seems as though almost overnight he turn into a boy instead of my cute little toddler. Now don’t get me wrong he is still cute – now more than ever with his little fuzz top and skinny bum! But he seems to have transitioned into a mature little boy – with so much understanding and knowledge. Knowledge of things a little boy shouldn’t have knowledge of.  Words like encephalon, Septra, Chemo, Poke, noodles (his central line), cancer, medicine and dressing changes. He continues to amaze us each day and we are continually blessed each day. He really wanted some pop today and we didn't have any in the house. I explained to him that we would get some as soon as we could but for now there was none. So he turns to me and says, "Well, in the meantime I will have some juice",  I didn't even know he knew what that word was!

Getting used to the central line

Today he was helping me clean up my bedroom and he spied his swimming pants. He held them up and looked at them longingly.  Up until today he seemed not bothered by the things that he can’t do anymore, like going swimming, going to the play park at the mall, going to gymnastics and hanging out at daddy’s school.  I have often asked him if he would like to do something – knowing full well that I would have to say no if he chose something that was on the ‘naughty’ list.  And normally he responds, “No thank you”. I can never quite understand how somebody who is going through such a terrible time and must be feeling so horrible and bored can be so polite and positive.  But today I asked him, “Do you miss going swimming?”  And he sadly shook his head yes and put the pants down. It made me want to cry a thousand tears knowing that this situation will not change for another 10 months. He is required to have that central line in until about Christmas time. The central line coming out of his chest means no swimming, no water, basically no submersion in anything. The central line, for those of you not privy to central line mechanics, is a small tube that goes into his chest from just above his collarbone. The tube then travels from a vein in his neck into his heart.  It allows medications to be administered directly into his heart thereby reducing the chance of accidents with the chemo drugs and also significantly reduces the amount of ‘pokes’ that he has to have. It is a necessary evil that makes things a bit complex but in the long run really is better for Christian.

Please keep the bone marrow awareness event in your mind and don’t forget to register via the link on the right hand side of the blog.  Come back and let me know via email or leave a comment on the blog. For those of you reading on the Eastern side of Canada we need you to start getting things going over there - lets HONOUR CHRISTIAN'S FIGHT. Thanks for reading and all the wonderful comments that I have received. You all encourage me to keep writing. Nighty night

PAY IT FORWARD

Well the past few days have been a bit dicey as Christian hasn’t been feeling great or eating that well. I am assuming it is due to the new dose of chemotherapy that he received last Tuesday.  However he is getting better with his needles and oral medicines despite that fact that he doesn’t like them. We did a dressing change last night for his central line which he wasn’t crazy about but was made a tad easier to get through as I had found some Star Wars Mr. Potato head’s earlier on in the day.  Christian had great fun changing them up and having battles within the potato head clan.

On April 4^th from 5 -9 pm we are going to be hosting a bone marrow registration event in Christians honour.  We have been so honoured with the blessings that we have received from the community that we would like to PAY IT FORWARD by hosting this event.  At this time in his treatment Christian does not need stem cells (bone marrow) but there are many other children with cancer, and sick people in general, who do need these donations.  The event is a computer registration social being held at Chris’ school, AE Bowers, on Monday evening (April 4^th). If you live nearby please come by the school for a visit and honour Christian’s battle with cancer by registering yourself as a donor. You could potentially save someone else’s life. 

We will have some light refreshments’, display Christians slide show and children are most definitely welcome! The registration itself takes 10 minutes and involves answering some questions, filling out a short medical yes/no questionnaire and leaving your contact information. Everything is done on the computer and is completely confidential. A representative from One Match (our national and international bone marrow registration service) will contact you and mail a swab kit to your house.  You simply swab your cheek with a Q-tip like device and put it back in the mail in the postage paid package provided by Onematch. It is that simple.  The best bone marrow donors are young males from 17-30 but anybody can register if you are between the ages of 17-50, you could be somebody’s 10 out of 10 match so register today!!!

Our goal as a family to is get 1000 registrants by the June 30^th, 2011.  Even though this event is being held locally we are challenging anybody who lives out of Airdrie to host his or her own event. Even if it is just 2 or 3 friends getting together for coffee and then registering together online.  Then we need people to return to this blog site or our Facebook page and let us know how many people have registered so we can keep track on the blog. Check back often to see what the count is. Outside of our own event we will pay homage to anybody else who hosted an event where more than one person registered. So get your own party going! Make sure to send pictures so I can post them on the blog.

Dinner with the fam!

So for now our focus is on getting as many people as possible to come out to the event on April 4^th or please register on your own. If you look to the right hand side of the blog we have put a link to the OneMatch website. Click on the link and follow it to the registration section.

Last night we took Christian out for a quiet dinner with my mom, dad, Norman and Margie to the golf course here in Airdrie.  He loved having everybody’s attention and even did some dancing for the staff and other diners! It was priceless.  

BLESSINGS

CROWELL CLAN OF ANIMALS

Everyday is a blessing.  And everyday we receive blessings. Every breath we take, every smile from Christian, every giggle from Ryan and every unexpected midnight diaper removal from Evelyn is a gift given to us - straight from God.  

We have received so many wonderful blessings this past 7 weeks that it has taken the words of gratitude right out of our mouths. I am literally speechless at the generosity and thoughtfulness of people  - some of whom I don’t even know.  From the first day that the word got through to AE Bowers staff that Christian was very sick to the kind words from a grade school friend today via email, I feel unworthy of the gifts we have been given.  My only hope is that the people who have extended their hearts to us know that we appreciate everything that they have done for our family.  The road to Christian’s health would have been a lot longer, rougher and steeper if not for the gifts we have received.  When our friends organized a fundraiser for us at the local hockey arena we were blown away. When the Genesis place called and offered services of babysitting and programming we were blown away. When a few young girls at the local middle school organized a bake sale for us and when the local church made us three boxes full of homemade meals we were blown away and when a random stranger came to the door and handed me $40 we was blown away. This can only be the work of God in people’s hearts.  I feel ashamed that I cannot personally name every person who has helped to get us to this point in our battle but we want you to know that each and every one of you will FOREVER be a part of Christian’s life.  

So I feel this is a bit of a lame thank you but there it is….THANK YOU.  Thank you to the community of Airdrie, our new friends, our forever friends, our family and strangers.

OUR BIGGEST THANK YOU TO OUR LORD AND SAVIOUR FOR GIVING US THE KNOWLEDGE AND STRENGTH TO BE THE PARENTS HE WANTS US TO BE AND THE COURAGE TO BECOME THE ‘CHRISTIANS’ HE KNOWS WE CAN BE

Pictures are worth a thousand words....really

The wait at the pharmacy was too much!

This photo depicts exactly what the past 48 hours have been like for Christian. We were in hospital until yesterday late afternoon for his large chemo dose. And it was a day filled with upset tummies, a sore head, an unwanted poke and a long wait at the pharmacy! Until recently Christian has been apart of a study at the Children’s hospital.  The study was looking at introducing a different drug into the chemotherapy regime in hopes of preventing more cases of relapses. The drug has proven effective in children whose cancer developed a resistance or returned for unknown reasons. However in order for him to be a part of the study he would have had to begin his radiation treatments this past week. After taking him for his initial appointment with his radiation oncologist and having his ‘set up’ scan (meaning they create the boundaries for which the radiation must hit) completed, it was determined that it was too dangerous for Christian to have his radiation at his current tumor size. If we would have went forward the radiation would have all but destroyed his right kidney, part of his liver, some of his intestines and his vertebrae from his thoracic spine down into his pelvis. In my meager understanding of tumor radiation I know that the radiation has to hit every single ounce of the tumor plus any body tissue that it is touching. If you leave a portion of the tumor un-radiated it will begin to develop a resistance to the treatment just as a bug can develop a resistance to certain antibiotics

Long story short - we are now on the protocol that all children with this type of cancer receive.  This means that they had to up the doses on one of his chemo drugs and it has made him quite tired and sick. The worst part of Christian’s treatment are the drugs he must take in order to protect his body from the chemo and the side effects of the chemo.  For 7-10 days post chemo we have to give him a dose of drug, which helps him to not “Nader” (that one is for you Tracey!) too long.  In other words it helps boost his immune system so that he is not in the 'danger zone' for getting sick for an extended period of time.  Unfortunately the needle hurts, and the drug hurts and the side effects of the drug give him bone pain and make him tired. And Chris and my hearts break eveyrtime we have to do it to him. Basically it sucks. Crazy that something that can make him so miserable could in essence save his life.

And once again the resiliency of children is made very clear to me, as I type I can hear Christian downstairs squealing in joy as he beats his Papa Norm in a game of Wii bowling.  Something’s in life are just too fun to let how you feel beat you down. Go gettem’ Christian!

So we are waiting for our next CT scan which will hopefully show us that the tumor is small enough that they can go ahead with his radiation without having to perform a surgery to remove the remaining tumor.  The tumor was so big in the beginning (about the size of a grapefruit in width but shaped more like a football) that by the time it shrinks down - all the matter in the middle will hopefully be dead as a result of a lack of blood supply. I hope this isn’t too much information – but these are questions that I had so perhaps you have them too.  So for the next four weeks we plug away at our chemo and pray that the tumor keeps shrinking and radiation will begin in April.   

It is amazing the number of ways that God has graced us over the past two months. Random people offering prayer, time, money whatever they can do to help.  And I don’t think that most of these people will ever realize what an impact it has had on our family. I don’t have the words to describe it.  Our next-door neighbour whom I have only spoken with a handful of times showed up at our door shortly after Christian was diagnosed and handed over this bible verse (all laminated and everything!)  Chris and I have leaned on its truth more than once.

Philippians 4:6-7

Don’t worry about anything, but pray about everything. With thankful hearts offer up your prayers and requests to God. Then, because you belong to Christ Jesus, God will bless you with peace that no one can completely understand. And this peace will control the way you think and feel.

A Fathers hand 

Quiet, Dark Nights

Catching a quick nap before chemo begins

I am sitting in Christian’s hospital room, its midnight and I have a fantastic view to the west of the lights of COP and the mountains.  It is pretty quiet on unit 1 at this time of night so there is a lot of time for reflection and prayer.  We had a great day today in the HOT (hemotology, oncology, transplant) clinic where Christian got his large dose of chemotherapy. We then spend the next 24 hours on the pediatric oncology ward while they infuse his body with fluid so he can properly cleanse his body of the poison.  Two words which just seem wrong to be together: Pediatric and Oncology. I still can’t believe that I am sitting here.  In this situation I find myself reaching for any kind of peace and hope that is offered or extended to me. So I revert to one of the first days we spent on unit 1. We had an amazing nurse (Chris likes to say its because she is a Maritimer!) who spent some time sitting and just talking to me, in fact I think it was a night like this – late and quiet and too much time for thinking.  When first diagnosed there is so much information that a parent needs to digest and the staff here are great at giving it to you in small doses so that your brain doesn't explode.  So our lovely “Eastern” nurse was coddling me through some really difficult questions. Is Christian going to get better? Are we going to be able to take care of him at home? How fast does the chemo work? Could this get any worse? And I remember her words almost verbatim, she said that given a choice between pediatric and adult cancer that she would choose pediatric cancer.  I was sure she was just saying this to make me stop crying and I didn't belive her for a second. Then she explained how amazing the progress in research and treatment has been around pediatric cancers. The survival rate, which used to be around 20% in the 50’s is now 80% in the 21^st century. She then reminded me of the resiliency of children and their ability to fight and recover and never feel too much loathing for themselves. As adults we know there would be much bitching and moaning about how we were feeling.  Kids just seem to deal with it like there is no other option but to be positive.  So I regress to an earlier blog… There is HOPE. At least that is how I see it.  Now Christian does get tired and when he gets tired he gets grumpy and when he get grumpy – watch out! For instance he spent the better part of last night at the bottom of Chris and mines bed underneath the blankets screaming. Not in pain but in I think in frustration. And I say, “hey – giver’ heck” because I think if I were Christian and I had to deal with what he would be dealing with I would have been screaming all along.   

The ultrasound room - where we found out Christian had a stomach tumor - 7 weeks ago

We have had so many good days and it seems that Christian is getting so much better.  His favorite past time is going to the driving range with his dad and papa Norm. Since the weather has cleared he enjoys going outside and shooting hoops with his cousins – thanks boys! – and playing hockey with anybody who will pick up a stick with him.  His activity level is increasing and this is so uplifting for me coming from the days when I was elated if I saw him smile.  We have come so far in just 7 weeks. The tumor seems to be shrinking all the time as I can barely feel it now with my hands.  So for the time being our prayers our being heard and we are doing well.  So many thanks to throw out – I think I will wait until the next blog as the words to express myself seem absent at this moment. Nighty night

Two heparin, one dressing and a partridge in a pear tree.....

Daily Heparin Flush in the "noodles"

Some days are good, some days are bad and some days you just want to crawl into a hole and see what's going on somewhere else. Today was one of those days. The at home routine is slowly starting to work itself out. We have a calender hanging on the wall that hangs specifically to  remind us to give him all of his meds, changes his dressings, change his caps and go to chemo!  I think I need a calender so that I remember to brush my teeth in the morning and put on my underwear.

As I am writing this sad blog my father in law is telling about how he was sharing Christians story with the pharmacist at the local drug store.  Who then proceeds to tell my father in law about a single father over in bagdad who has five children and one with cancer. He is so poor that he can not afford to pay to treat his sick child and feed the others so he had to let his son succumb to cancer so that the others could survive. Do we really know what it is like to struggle? So as I am sitting here feeling sorry for myself for how difficult dressing change days are.......we are blessed over and over and over again.  It is still traumatic for Christian and a reminder to not wait until he is over-tired to do his changes! So for now dressing changes on saturday, centraline cap changes on sunday, heparin in his lines every second day and each day a blessing. 

Ryan catching a few winks whenever I can

Two peas in a pod.....

It is so intriguing how life's little occurances seem to play on each other like the chapters of a book. And it is not until you read the final chapter that you can fully appreciate how the different moments of the book work on top of each other to create the finale.   Nobody could have fathomed that when my mother's cancer (Low Grade B Cell Lyphoma) reared its ugly head in the summer of 2010,  that it would help to prepare us for Christians unimaginable present circumstance. My mother (who said I could only use her name if i told everybody how wonderful she is!) and Christian have always been little buddies - thick as theives - two peas in a pod - however you want to look at their special relationship. So I geuss it only seems weirdly suited that they would be going through chemotherapy at the same time.  It even gets as freaky as the two of them using some of the same chemotherapy drugs.  Two opposite ends of the age spectrum - but both ending up in the same place.  The lessons I garnished from supporting my mother has armed me with the necessary information allowing me to be the best advocate for Christian's health care treatment - a gift from my mom. 


 My mother had her last Chemo dose on March 1, 2011 and has reponded very well to her treatment. She was very lucky to have done well with not feeling too ill or losing her hair.  It took her a few chemotherapy treatments to get her drugs sorted out so as to minimize her chemo symptoms, give her some energy and get the sewer pipes working as they should (sorry mom!)  It is amazing how much I learned from her experiences that I have been able to apply to Christians treatments.  From the first day of Christians diagnosis when Chris and I both had the 'deer in the headlights' feel; to just this past week when I took Ryan to his immunization appointment only to realize I had forgotten him in the van. Life is a tad complexe, to say the least.  So having some information already ingrained in my brain has made a huge difference in helping us cope. Everything from knowing some of the chemo drugs,  understanding side effects,  figuring out what blood counts mean what, and most importantly keeping Christian safe.  My mom had already figured out how important it was to keep a timing record of drugs and the physical responses to chemo and perpetually making a list questions for the oncologist.  


So not a person on earth can fully understand the direction or purpose of God's plan, the places and circumstances He choses to lead people to. But they all seem to meld together to create s perfect story that only He could create. My mother did not want to have to go through chemotherapy.  Yet I know she wouldn't take it back now knowing how much it has helped chris and I work through Christian's cancer.  With our upcoming Bone Marrow Awareness clinic, maybe just maybe, we will help to save a life. Would we take back Christian's cancer?  It is all a part of God's plan so we must trust. Some of the time life doesn't make much sense and then only God sees the last chapter, the finale and He knows exactly what he is doing.  So trust. 


On a lighter note I wonder about God's purpose for my daughter's actions. She has taken to, on a nightly basis, disrobing her self and then removing her diaper and launching it over the side of the crib (the good nights are the ones when its empty!).  Then she proceeds to scream out until we fetch her and she looks at you with the most beautiful smile, large eyes and says, "I'm cold".  I think maybe God is trying to remind me how precious she is and wants me to rember her as a two year old in these tough times when so much of our attention is on Christian. So heres to God's plan....and my peas in their pod.

 Did anybody tell you i'm cute?

There is hope...

Loving my superman hat and cape - thanks Louise and Tracey!

Thanks so much for the lovely feedback from my last blog. Understandably it made some of you cry - it of course makes me cry.  But remember that there is Hope - there is always Hope.  We understand as a family it is difficult for the people who are not involved in our immediate life to see the progress, the smiles, the laughter and the possibilities.  When I first heard the news I did drop to my knees and I did wonder if my son was going to die. I felt hopeless....but only for a while. The doctors at the Children's hospital are amazing and so very prepared for this moment in too many parents lives. The first thing that Christian's oncologist told us was that there is no reason to think that Christian will get anything but better. There is it......HOPE.  As parents whom only hours earlier were in the depths of despair we clung onto his words.  I don't remember a whole lot about those first few weeks as each day seemed to blur into the next but I remember him telling us those words - I can still see his face and his blue shirt and tie and his honest eyes - giving us hope. We belived what he said and he didn't even know what kind of cancer it was yet.  So slowly our reality began to change and our focus shifted to, "what do we have to do now to make Christian better".  One day at a time, one test at a time, one chemo dose at a time and slowly things get better.

We want everybody to know that in our home there are many many smiles and laughter and good times. There is peace in our hearts and we trust in God to lead us and point us in the right direction. To give us calm when things are crazy.
 The first month the worst part of our day was when we had to administer his many meds and change his dressings. Some by mouth, some by needle and none of them wanted! It would break my heart as Christian is yelling, "Don't do it mommy, don't do it!" And as sad as it may seem this has come to be part of our daily routine that Christian has accepted. He even reminded me tonight, "Mom - you forgot my poke". Then proceed to cry and tell me he wasn't ready!
So don't be afraid to cry and be sad when needed but look to God for hope and trust in his plan and all will work out exactly the way it is supposed to.

Spending time in the HOT clinic getting my chemotherapy

So we are currently in week 6 of our 43 week timeline.  Every third week we are re-admitted to the hospital for his large does of chemotherapy.  He needs to stay so that they can properly hydrate him so that his kidneys can effectively remove the chemotherapy from his body.  He also gets doses of medicine to protect some of his other organs and to help him deal with nausea.  He really does not mind going to the hospital as the Wii always seems to find its way into his room (once again the amazing staff at the ACH seem to only have the best interests of the kids in mind).  When we checked into the hospital for the very first time the nurses didn't just ask what kind of allergies he had - they wanted to know what were his favorite things to do.  Did he have a favorite teddy or blanket? What could they do to make him feel better? And in the long run it made US feel better.  So each new day is a blessing and a chore and we will take it in stride - and tomorrow we will take the zoo!!!!!

From the begining......

This is our story about Christian's ongoing fight with cancer. 
The word cancer - or even worse - childhood cancer, seems to be a taboo word and an unfortunate reality for so many parents. This is why Chris and I decided it was so important for us to share Christian's story. A story caked in reality and iced with hope. Christian's battle with cancer started late in 2010 - long before we could have imagined that this would be the path our life would take. 

Getting use to his central line

One evening while sitting around and visiting with some of our friends I found a lump in Christian's tummy. Coupled with the past weeks constant fevers and waning appetite we took him to the ER at the Alberta Children's hospital assuming it was maybe his appendix or in the best case scenario some unrelenting poo!!! Hoping for the best case scenario we were soon faced with the worst case scenario. I can not describe the feeling that a parent has the first time you hear the word "cancer" and your child's name in the same sentence. Leaning over top of the huge table he is lying on for his ultrasound I hear the words, "Christian has cancer". A moment supposedly reserved only for other people....not me. Isn't this what every parent says? It is so cliche to say but sure enough this only happens to other people - could it really be happening to me?


This moment of horror was followed by weeks of torment as we waited for a final diagnosis and staging for his cancer.  Within this two week period Christian seemed to get sicker and sicker as the tumor grew to a massive size inside his belly - stealing room from every internal organ in his little body. It finally grew to such a size that he could no longer bend over without painfull consequence and his appetite had long since vanished. He was on rotating pain and nausea medication and due to the increasing pressure in his abdomen his bowels were a mess. Two weeks of testing, surgeries, needles, CT Scans, bone scans and more we listenend intenty while Christian slept in his all too familiar room, 'our room', #16 on unit 1.  Our amazing pediatric oncolgist explained to us his diagnosis of stage three Rhabdomyosarcoma. It is a solid mass tumor in his belly that had begun to snake itself into the muscles of his little leg and into the main vessel of his lower body.  We nearly dropped to the floor when he told us that despite the massive size of the tumor it had only been there for a matter of weeks. And chemotherapy needed to begin immediately. Unfortunately he had gotten so sick that they had to make sure he was healthy enough to withstand the consequences of the chemo. It is a wierd juxataposition when you are actually looking forward to starting chemotherapy - sending a poision through your child's body. Yet I felt unexplainable relief as the chemotherapy began to course through his blood vessels knowing that it was on a crash course with this massive tumor in Christians' belly. A meeting of David and Goliath..... 
It has been very difficult for Chris and I to watch Christian go through all of the testing and poking and proding. As a mother the worst thing I have had experienced so far in this process is about two weeks into this whole ordeal Christian looked up at me and said, "mom - I can't do this anymore". I did not know that a three year old knew how to feel despair but that is what it was. However the great part about children dealing with cancer is that they forget and forgive and I am sure he will never think of that day again. He is truly our little hero and continues to amaze us with his positive attitude and ability to continue to function despite the pain and irritation he feels. 
He loves the song by Pink, "So what". Listen to it.  He is our rockstar and we continue to talk about how he is going to "..pick a fight..." with the thing in his tummy. Chris and I often talk about how God has spoken to us in different ways throughout this process. I was walking the mall in a daze, trying to escape a little, and looking for some Live Strong gear when I happen to see a small kids size Live Strong t-shirt that said "Pick a Fight" - I almost started to cry when I realized that small messages of hope are all around us if we look and listen. 

Happiness despite circumstance....what an amazing boy!!!

Through all of these events Chris and I try to lay our focus on God and knowing that He has a plan for our family and for Christian.  We prayed with family and friends together is our hospital room and alone at night or anytime we thought God was listening. Our first prayer was answered when we discovered that the tumor had not metastisized to the rest of his body. Although his chemotherapy regiment is still very long and intensive it could have been so much worse. He will undergo 43 straight weeks of chemo (once per week)  with intermittent radiation and possible second look surgeries. Our next battle to win and pray for is that the chemotherapy continues to work without the tumor developing any resistances. We pray that the tumor shrinks to a small enough size that a future surgery is not required. 
We feel strength from our friends and family who continued to pray for us and visit us and bring us food and laughter - it seems always at the times when we need it most. We truly belive that God has a plan for us and this crazy life is  somehow going to work out just the way God intended it to. So we pray for strength and understanding and it seems to come our way.  We found a "favorite poem" left by a former patient of the Oncology clinic (who is now in full remission) that has given us incite - it goes like this:


I asked God for strength that I might achieve, 
         I was made weak, that I might learn humbly to obey...
I asked for health, that I might do greater things,
         I was given infirmity, that I might do better things...
I asked for riches that I might be happy,
         I was given poverty that I might be wise…
I asked for power, that I might have the praise of men,
         I was given weakness that I might feel the need of God...
I asked for all things, that I might enjoy life,
         I was given life, that I might enjoy all things...
I got nothing that I asked for-
         but everything I had hoped for,
Almost despite myself, my unspoken prayers were answered.
         I am among all men most richly blessed.

It just goes to show us that despite what we think it best of us and our families....God just might have a different plan. And His plans are always better!
So our story is long from complete, in fact I think we are still in chapter one. Still our faith is strong, our love for Christian is pure, our friends are true and we have Hope in Jesus. 

His favorite hospital past time WII (despite needing a blood transfusion and hour later) .  A true testament to kids constant desire to seek out fun and enjoyment regardless of how they are feeling

We hope you feel some comfort to read the blog and know that you are all apart of our battle and that we feel your prayers and thoughts. There are so many stories to tell and moments to speak of so I we will write them down as they come and as we remembe them. Thanks for reading and thinking of Christian.