Bandaids and Spiderman

No words needed!

Christian's battle over his cancer has entered a new phase. Starting May 9^th we will be going to the Tom Baker Cancer center at the Foothills hospital for 28 consecutive days of radiation.  Excluding the weekends and barring him getting ill our final treatment day will be June 16^th  - one day before Chris and mine’s 5-year wedding anniversary. Where does the time go?  I would be lying if I said I wasn’t a bit disappointed when we received the results from Christian’s last scan. I am not sure what I was expecting so I don’t know how I can be disappointed.  It think my reasoning stems from the thought that with cancer 70% is not enough.  It is either 100% or not at all. It is great that we have come this far but it is not where you have been but where you are going and we need to stay focused on how to get rid of the last 30%.

When we were told that the tumor was still in his vessel I was so disheartened but we used it as a reality check that we cannot let our guard down or lose focus on what we are supposed to be doing- helping Christian fight.  Our oncologist explained that the tumor, even though considerably smaller, still had extensions and is oddly shaped. This makes radiation complicated and a lot of work for the physics tech to create the fields around which he will be radiated. Killing the tumor is not difficult but protecting the organs it is touching is. We had our radiation scan on Wednesday (after the oh so exciting ambulance ride over from the Children’s!) We were pleasantly surprised to receive a phone call the very next day saying that the radiation was a go! Last time we went through this, the radiation oncologist and our pediatric oncologist debated for weeks about whether it was the best course of action (doing the radiation knowing that many of his organs and vertebrae would be badly damaged or destroyed).  This gave us some hope knowing that he looked at the scans and immediately thought it was possible. Yay!

Bingo - my favorite hospital pass-time!

We have been blessed to have Marilyn (Chris’ mom) in our home helping us with the kids and look forward to the visitors we have coming. Rodney, Denise and co., Rhonda and Brent. I am also happy to have visited with my good friend kirsten and her daughter, Morgan, who hung out with us at the hospital on Tuesday. I love how we have reconnected with so many people in our lives and we are so thankful for the new friends we have made. They have become our family and provide us with strength and reassurance that we are not alone. 

Weeks supply of meds and such

Christian continues to do well with his Chemo. This last big dose he was not nearly as sick as he has been in the past. So thank you for all the prayers. Please continue to pray that the tumor would release itself from his vessel and melt away with this upcoming radiation. Thank you to Western RV for supporting our family by allowing us to come in and play with their ‘toys’ and by hosting the Texas Hold ‘em poker tournament. Christian finds strength in all of you and of course his super hero jammies! (Thanks Nanny!)

Today I am thankful for:

1. Health Care coverage

2. Cool band aids

3. Family

Picking out the bandaid....daily ritual

Peace in God's Rock Gardern

Crowell Family Photo Op - Is Evan screaming for joy? ummmm no......

Today was one of those days when we woke up and said, “lets get out of here!” In fact it was the first time in three months that we have done something like this. Within 25 minutes we were out the door, quick stop for gas and Tim’s and we were on our way to the mountains. I never ever get tired of the drive there. From the second you start driving west you watch the mountains grow and grow, as they seem to get grander with each kilometer you drive. Until you finally arrive and stand amidst them and feel their true power. They are so large and overwhelming and yet it is a place where I feel the most amazing peace. Perhaps it is the smell of the trees and vegetation, or the fresh air, or the sound of the river flowing. But I think the real peace comes from seeing first hand the power of God’s creation. Something so huge and foreboding, yet so reassuring.  Reassuring me that despite the battled we are in the midst of, there can be times when it doesn’t matter that Christian is sick. 

Sibling time!

Today for a total of four hours we were a normal family having an amazing time in the mountains. We ate pizza in the park, threw rocks in the water and enjoyed each other’s company. No needles, no talk of sickness, no talk of hospitals – just shear joy experienced by all. The ride home says it all when three seconds into their seats Evelyn and Ryan are sound asleep and Christian quietly sits in his chair. The look on his face was so calm and peaceful as if he too felt bigger and stronger and more confident after an afternoon in God’s rock garden.  I am so thankful for days likes today that we are able to be together and feel normal. We all feel lighter, happier and better suited to handle tomorrows daunting task of a large does of chemotherapy. I pray to God he can keep his happy face and does not get too sick. I want more days like today, I want him to get better and be strong and climb to the top of a mountain. For now he will slowly climb his symbolic mountain of chemotherapies. Each dose brining him closer to his finish line when he can proclaim that he did it.  He beat cancer.

Today I am thankful for:

1.     Rocky Mountains

2.     Pizza in the park

3.     Evelyn pooping in her crib then peeing in the potty!!! yahooooo

 

Pizza in the Park

Chocolate News

Easter Bunny was good to us!

Wishing everybody who reads the blog a very joyous Easter Sunday. Today is the day celebrating our Lord and Saviour Jesus Christ who died on the cross for us and rose three days later to prove that not even death can defeat Him. He died to give us grace and a chance at a life with Him eternally.  We all fall short of the glory of God and I feel like I am at the top of the list. As a parent, child, sister and wife I constantly wonder if I could be doing better. Making better choices and responding more appropriately to situations that frustrate me. So I am more thankful than ever today that God has granted me Grace even though I am extremely undeserving. That He loves me even when I am unlovable.  And as my husband pointed out to me today as I was having a moment of anxiety, that we all need to strive to respond to difficult situations how Christ would have responded. With more understanding, more compassion and more love. My prayer for today it to be able to be still and know that He is in control – I can not steer the boat but I can respond faithfully to His plan and trust that He will guide my family to the best place for us.

It is peculiar how God speaks to us through different channels. Chris and I went to a movie last night – Soul Surfer – and I cried the whole two hours. As it touched me that this girl was also sturggling to uncover the truth in God's plan for her.

There was a verse spoken during the movie Jeremiah 29:11…….

 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future...

and it was like God was speaking directly to me through the movie screen reminding me that I am not alone and despite how out of control I might feel He is always in control. 

We got a few results back from our Oncologist on Thursday. There is much more information to come, but God bless our oncologist, he didn’t want us to wonder all weekend, so he called with whatever little info he had.  He told Chris that Christian’s tumor had shrunk by 65%. He was extremely pleased with Christian’s response to the treatment thus far.  Unfortunately the tumor is still invading a major vessel in his lower abdomen so surgery is not likely at this point. There are many many more discussions that will be had before a plan of action is determined and hopefully most of this will be figured out next Tuesday on his big chemo day.  I was a bit a sad when I heard that news as I truly felt he would call and say the tumor was almost gone and its wicked arms and legs would have come out of the areas it had infiltrated. I felt like 65% wasn’t enough. But then I had an epiphany and realized if it has shrunk by 65% then that means there is only 35% of the original tumor left and that sounds so much better!  I will keep everybody posted when we hear more news. Thanks for the prayers.

    Today I am thankful for

1.        Grace

2.        Warm spring evenings

3.        The Easter Bunny

Walk the talk

Only 16 short weeks ago

It has been a difficult week for me. I feel weird saying that it has been difficult for me being that my son is the one who is battling cancer – but it has. The flu has snaked itself into our home and despite our best efforts to keep him ‘clean’ Christian has now come down with a full fledge cold. Chris and I jump at every cough and cringe at every sneeze. Each hug is an opportunity to check his temperature as we wait for the inevitable midnight run to the hospital. The very first thing we learned when Christian began his chemotherapy treatment was how important it was that he doesn’t get a fever. A fever is an indication that your body is attempting to fight some kind of an infection. The scary part is that some days he doesn’t have an immune system to fight with. So if he were to get sick his only line of defense is the hospital and the drugs (antibiotics) they give him. So at the first sign of a fever we pack our bags and head straight back to unit 1. Early on in our treatment when Christian was really sick we made two or three late night runs to the hospital with fevers. It is a scary and helpless position to be in when your child is sick and there is not a single thing you can do about it – but pray.

So back to the original statement about the difficult week – as we wait for the results of his CT scan I find myself playing the ‘what if’ game. I feel ashamed that I can talk the talk but when it comes time to walk, I lack the strength and trust to do so.  As I sit here and contemplate his future I am trying to remember that he is in God’s hands and will be taken care of. But it is so difficult to let go. So difficult.  I keep thinking back to our first few weeks on the unit and how sick Christian was and how far we have come since then. As I am typing these words Christian leans over to me and says, “I love you mama” and throws two skinny little arms around my neck and gives me a squeeze and a peck on the check, as if to reassure me that he is ok and I should be too.  So many things have happened, so many stories of people helping us, so many trips to the hospital, so much information. Bringing us to this point here –waiting to see how this episode will end.

Christian's self portrait

There are some things that I don’t want to forget about these first few months of our voyage.

-       Eating all the homemade meals in the cafeteria at ACH hot or cold brought by so many different families

-       Praying in our room with friends

-       Spending time getting to know each of our nurses

-       How many star wars action figures he was able to accumulate in the first few weeks (he had a bag thatwas full of present and we let him open one each time he had to have a poke or a test – but the bag was gone in the first few days) now we have every star wars guy imaginable and more pokes to come

-       The comforting feeling of returning to room #16 when Christian was sick with fevers – we knew when we were there that he would be taken care of

-       Standing in the hallway just before lunch with the medical team listening to ‘rounds’ as they discussed Christian and his plan for the day

-       Calling Marilyn on the phone when we discovered his bone marrow was clear and not been able to keep the tears of out my eyes

-       How much Christian has learned and developed over these past few weeks. His understanding blows me away and I have no words to describe the love in my heart for my son.

Weird blog today that I think is an excellent representation of my state of mind due to lack of sleep and inability to shut down my brain – all over the place. Thanks for reading and praying for us and for Christian's healing.

Evan and Nanny 

Today I am thankful for:

Safeway rotisserie chicken and instant mash potatoes

Movies you can watch over and over again (When harry met sally #233 tonight)

Easter jube jube candies 

Beautiful fresh flowers

HAPPY BIRTHDAY EVELYN!

Happy 2^nd Birthday to our beautiful Evelyn! It was a great weekend of birthday festivities with our family. We spent a few short hours in the hospital on Friday AM checking Christians blood counts. Once we got the go ahead we aimed straight for the mall where Christian picked out a Barbie for Evelyn.  Chris’s mom, Marilyn cleared out the dollar store and made some lovely gift bags for all the kids and co-authored with me on the beautiful cupcake balloon display! Anyways nothing better than a weekend with family, pizza, presents and cake…..yum! Now if we could just get rid of this snow and enjoy the outdoors it would be even better. The snow didn’t stop Evelyn from enjoying her new playhouse courtesy of her Grammy.

We have one more day of weekend to enjoy then we are off to the hospital early Monday morning for Christian’s first re-staging CT scan. We are praying for the tumor to have shrunk down to almost nothing (I’ve been assured that there will be something left there given the initial size of the tumor) but I think we could “out pray” the Dr. , what do you all say?  Tuesday will be a small chemo and then we are hoping to get some results from the scan.  Thanks again to all the people who have being wrangling up the registrants for onematch (Kate, Jim, Reagan). 

Today I am thankful for:

1. Cute cupcakes

2. Evelyn

3. Cheeseburgers

Fuzzy head, fuzzy heart

Did someone change superman's costume?

I am wondering if there is something in the water over here at the Crowell household. It is 11pm at night and 2 of my 3 children are still awake (despite starting bedtime 3 hours ago!)  It has been a very tricky day for me, as I seem to be struggling with the smallest of issues.  I am sure all of the drama under our roof is compounded by the fact that Ryan has taken to waking me up every 2 hours at night. So the issues of the day that must be dealt with in a calm and collected manner leave me sobbing at the kitchen table.  Each evening our routine consists of cleaning out his central lines with heparin, giving him his two pokes (one to reduce the chances of a blood clot and one to boost his immune system) and on the weekends change his dressings.  But tonight I was useless, completely useless. So pathetic as a caregiver that my son, whom is screaming, “please don’t do it!”, notices I am crying and starts kissing the top of my head and telling me its all right. Something is not quite right with this picture. But it is what it is and I guess the Lord gives you strength from where ever He chooses (even if it’s from the person your taking care of).  Because tonight Christian was my strength, my rock, my happy smiley face, and my heart all bundled up into one little fuzzy headed little man. My rock star. So this post is for Christian who helped to get me though this day when I wasn’t sure I would be able to.

Friday is Evelyn’s 2^nd Birthday and I have yet to plan an extravagant due so I think we will be happy with pizza, cupcakes and balloons.  She is such a little character, a lost little soul trying to find her space in this chaotic house.  She has the heart of her Nanny and her Grammy and thank the Lord for them.  I pray that she knows how much we love her. I pray that she grows up to be strong and independent and a little rock star of her own (preferably without the tattoos and lip ring!)

Thank you to everybody who has been emailing me and posting online with one match registrations. We have reached all corners of Canada so lets keep pushing on.

Tonight Christian tells me he is thankful for:

1.    . His paintings

2.    . The flowers on the table

3.    . Star wars

Spring Fever

First cruise on the bike

Spring is in the air and life seems to have gotten a little lighter. Christian and I just got back from a ‘cruise’ to McDonalds with the windows down and the music blaring.  It feels so good to forget for a moment and enjoy just being together. Christian amazed me again today with his understanding and patience for his disease. We were approaching the drive through and he asked me if we could instead go inside and play for a bit, just a few minutes he says. I explained to him that we couldn’t go in because his counts were very low and so it wasn’t safe for him to play were it might be dirty.  So he smiles and says, “Ok will you let me know when my counts go high so that we can go back to McDonalds and play?”  But then I had to stop the car before we went through the drive through so Christian could take off his jacket and show the ladies his batman shirt and cape as we drove through for our lunch! He is so cute.

Christian rode his bike around the block and we cleaned the yard – ahhhhhh life feels good with the sun on your back and a nice warm breeze on your face.  Evelyn was happy to have inherited his bike helmet (even though she couldn’t quite figure out how to get it on!) Ryan is getting closer and closer to crawling  - I think the gates will be up by the weekend. Life continues to roll forward and the kids continue to grow and learn before our eyes despite all that is going on under our roof.

I DON'T THINK THIS IS RIGHT!!! 

Tomorrow we head back to the hospital for chemo #11. Only 32 treatments left to go. I cannot believe we are a quarter of the way through our treatment. One week from today we will be having Christians evaluation CT scan to determine how much the tumor has shrunk.  There are so many good things that could come out of next weeks scan so we pray and pray that it shows only good things. If the tumor is small enough they will not have to do surgery to remove the remaining mass and we will begin radiation immediately. If the tumor has moved out of certain areas we will be able to stop his anti coagulants which means one less poke everyday. If the tumor is small enough he will be down graded to a stage two cancer instead of a stage three. If the tumor is not quite small enough to begin radiation they will have to do a surgery to remove the remaining tumor. This will mean a week or so in hospital followed by two weeks recovery at home then radiation will begin as soon as possible. It is important that the size of the tumor is as small as possible so that the amount of his abdomen to be radiated is limited.  There WILL be some damage to his body from the radiation but the pro’s and con’s must be weighed and obviously getting rid of the cancer trumps all else.

Lord let your light shine!

So please pray for healing for Christian and patience for Chris and I. We need strength and wisdom to lead our family and our children. We need to be strong for our kids so they know we have their backs. Thank you to everybody who has supported our family and helped us to get as far as we have. Love and hugs to all

Today I am thankful for:

1.     1. Quite house and hot coffee (at the same time!)

2.     2. The feeling my body gets after a hard workout

3.     3. God leading the way 

"Be still and know that he is God"

be

Ducks and Blood

Christian at 2 sporting the duck costume - QUACK!

The 'mac book' has declared war on me so I have reverted to our old desktop. Funny how times change...I am sure it was only yesterday when my mom and dad bought our first home computer that took up half of the desk!
We spent the whole day today at the HOT clinic where Christian receive his 3rd blood transfusion. It is a very weird feeling to stand beside his bed and watch somebody else's blood drain into his body. Amazing to think that not too long ago this blood was pumping in somebody else's heart and now it is helping to keep my son alive. Without these blood transfusions he would not be able to continue with chemotherapy and without chemotherapy he would not be able to fight his cancer. So thank you to anybody who has taken the time to donate blood. You have saved my 'ducks' life.
The HOT clinic is slowly starting to feel comfortable and safe for us. Christian instantly runs for his favorite toys and we look for familiar faces of other families also fighting the good fight. We have met so many good families, all with an incredible story to tell. Please consider registering for the onematch program and if you have already registered please tell somebody else to go and register. We are over 1/10th of the way to 1000 registrants...I know we can do it!
Short and sweet today as I just want to let everybody know that we are pushing on and Christian is feeling much better now that he's had a transfusion. Imagine the terrible two's - on cocaine - this is how I would describe a small child in need of a blood transfusion - watch out!

Thank you to the ladies at the TD Bank who held a bake sale in Christian's honor today!

Today I am thankful for:
1. Tim Horton's coffee
2. Ryan's red hot teething cheeks
3. Sitting on the couch, warm and comfy with Chris, watching the Masters

John 3/16
"I can do all things through Christ who gives me strength"

Couch Sleeper

Don’t get too comfortable – I am reminded every 3 weeks to not get too comfortable. It is 6 am and Christian wakes up with his head in a bucket. It has been another rough go at the hospital and I am once again reminded of the severity of what we are doing here.  Christian has been great and is responding so well to his chemotherapy treatments. I find myself thinking, “ok we can do this – its not so bad”. Then we are hit with his big chemo session and I am sorely reminded how serious this all is and how poisonous all of those toxins are in his body. He is such a brave little boy as he lies in his hospital bed with his throw up bucket in one hand and his star wars figure in another. As Christian is throwing up into his bucket Chris is saying, “Let’s put this stuff away” (referring to his star wars guys – the quantity now reaching epic proportions!) and Christian puts his hand out and says, “No, wait I am almost done”.  I am so thankful that he is such a trouper and almost seems to be guiding Chris and I through this journey. He puts up with intolerable amounts of crap with all the pokes, arm hugs (blood pressure), chemo drugs and throw up that I wonder how on earth he does it. 

Each time he has his big does of chemo they give him copious amounts of fluid to help flush the chemo out of his system quickly. This time there was so much fluid that his little face swelled up and he even ended up with a ‘flow’ heart murmur. He must feel so horrible yet he constantly seeks out happiness. He is so clever and catches onto so much of the conversations that Chris and I have when we think we are being ‘sneaky’.  So at a time when I should be sleeping I am sitting on my couch in the dark thinking of my little trouper and all he is going through. How difficult this journey has been for him and for our family. Chris and I struggle each day to remain positive with each other and even basic conversation misunderstandings and can turn into ‘couch sleepers’. But once again we rely on God to lead us through and dark mornings like these remind me to lean on Him more and ask Him for help more and trust Him more – so difficult to let go. “Trust in the Lord with all your heart and He will guided you home”.

My boys - hanging on unit 1

We met another family on the unit today with the same kind of cancer that Christian has – there is a multitude of stories about how parents have found their child’s cancer. It is amazing that we all end up in the same place doing the same thing when the very day before we had all these ‘plans’ of grocery lists, errands to run and ‘to do’ lists to finish. Now, none of those things matter and you cannot even imagine a time when that was reality. Today is a reminder for me that our reality has changed and as much as I would like to go back to my lists and such I am thankful for this new outlook on our lives. I am thankful that we have been exposed to our silly ways of worrying about nonsense and material things when we should be focusing on family and creating memories with our kids. So sorry about the ‘boo hoo’ blog but I will smarten up here and begin once again to be thankful for the gifts we have been given. I will keep my head up and smile for Christian, Evelyn and Ryan because all they want is a happy mommy and daddy, hugs, kisses and a swing set outside. Life couldn’t get better – but it sure could be a lot worse – so I am thankful.

Brother Peder sporting his christian "do"

Thank you once again to all of the people who came out and supported our Bone Marrow event at AE Bowers School, especially the Airdrie Fire Department who showed up in droves with their big truck.. We need to continue to push for our 1000 registrants and to break down the barriers and myths associated with bone marrow donations.

Airdire Fire Department and Lisa Metcalf doing their part

Tracey and Franka

My mom, Heath and Kelly (preparing for parenthood!)

Today I am thankful for:

1. My cutie Evelyn who likes to run around after her bath saying, “I naked!”

2. Ryan up on hands and knees

3. Sleep in a soft warm bed with Christian's hand on my face

Cutest little 'lip sucker' ever!!!!!

Snowmen

Quick blog today to remind everybody about the one match bone marrow registration event at AE Bowers School tonight from 5-9 pm. We are going to have about 30 or so computers set up for people to register. As well we will have coffee and snacks and are going to be running through our ‘Christian Rockstar’ slide show. Please feel free to come by even if you just want to visit. If you don’t live in our area please join our cause and HONOUR CHRISTIANS FIGHT WITH CANCER by signing up at www.onematch.ca.  It takes only 10 minutes and could possibly save someone’s life. Thank you to everyone in advance, especially to those who have already registered or have tried to register!

We had a great snow day today and built our first snowman with the kids (at least until four young boys drove by in a Honday Odyssy and kicked it over - Grrrrrrr). It is great to be outside and feel the sun and warmth on our pasty Albertan skin.  Evelyn would spend hours and hours outside and seems to be a little connected soul with nature. We are going for our big Chemotherapy treatment on Tuesday so it will be an extra cautious week as we attempt to keep Christian from getting this cold that everybody seems to be getting. He will most likely need a blood transfusion before he can receive his treatment so no better time to donate blood than now! I am sure I have mentioned this before but he has already had two blood transfusions so no less than two people have already saved his life.  You could be next – donate blood today, or tomorrow or the next day. There is a blood donor clinic in Airdrie on the 19^th of April at the town and country.  

Today Chris is thankful for

1.  Family

2.   His beautiful wife (honest he is saying this!)

3.  .  Quiet sleeping children

Feed the soul

Tonight’s blog is dedicated to all the people who were involved with last nights “Crazy for the Crowell’s” school dance at AE Bowers.  It was the most amazing night and Chris and I feel truly blessed to be a part of such an amazing group of people.  From all of the teachers and volunteers who organized the event, to all the people who donated auction items and of course all the people who attended – things couldn’t have turned out better.  Chris and I were literally floored by the turnout and the support that we felt from every person we spoke with.  My favorite part of the evening was the DJ playing some of Christian’s songs.  Everybody seemed to know how much Christian liked those particular tunes and much those songs have lifted his spirits these past few months. The Black Eyed Peas, Pink and Tom Cochrane made everybody get up, dance and sing. Nothing like a little PINK to pull a community together! Anyways there was nothing more uplifting than hearing the whole gymnasium yell out, “So what you’re a rock start!” and we know they were talking about Christian. 

Chris and I will fully admit that we were extremely nervous about bringing Christian into a gymnasium crammed full of people and kids (and it was crammed!). But after spending the evening there and seeing the expression on Christian’s face when they played his music, and feeling the love and support from everybody there  - it was a no brainer. Even though we were exhausted at the end of the night our spirits felt lighter, especially hearing so many encouraging words from so many kids, parents and supporters.  It brings to light that there is more to healing an illness than giving medicine.  We must remember to treat the soul and the body will respond. That evening definitely lifted Christian’s spirit and ours as well.  We hope it lifted yours to see Christian smiling and doing well – to know that he is fighting the good fight.

This is one big truck!!!!

So THANK YOU to everybody involved.

Daddy, Christian and Uncle Dalton hanging with the Aerial

The day was made even more special by a special visit from the Aidrie Fire Department just before dance time! Nothing to make you stand up and take notice than a massive aerial fire truck driving around your crescent!  Christian was absolutely tickled pink and thoroughly enjoyed standing on the truck. Next step is a ride in the bucket! Yahooooooooo So thank you to my brother Dalton for taking time of your busy schedule (no joking here) to come and visit Christian. He thought it was great, as did we!

Today was a day of happiness and tears, as we had to say goodbye to Papa Norm who has weaved a tight spot into the hearts of Evelyn and Christian. The kids have thoroughly enjoyed getting to know their paternal grandfather and did a very good job of bringing out the softer side of Norm (didn’t know it was in him to wipe a bum and watch Diego marathons!) Norman was more than happy to walk Evelyn to the far side of Airdrie and back and become the official Wii expert (sorry honey!) So thanks again for all you have done for us over the past three weeks. We will truly miss having you around and it will be a tough space to fill in our children's hearts.

Today I am thankfull for:

1. Grandfathers love

2. A cold snow day to help get things done around the house

3. Music