HAPPY NEW YEARS

Life is good - especially with my new Boston hat!!!!!

Papa Norm and Aunty Sarah getting in a little bit of last love

Well what can be said about what the year 2011 has brought to our family? And what can we anticipate 2012 will bring us? 2011 will forever be a year that changed our lives. We entered the year with great expectations of health, prosperity and happiness. Well 20 short days after the New Year was rang in we learned that ‘our goals’ for the new year no longer mattered and despite what we thought was important for us, God had a different plan for our family. Christian was diagnosed with cancer in the early morning hours of January 20^th.  Knowing how fragile our days are, my expectations for 2012 exist in today only. What can I do today to make sure my kids know they are loved? What can I do today to show my husband how much I appreciate him. What can I do today to glorify God and bring peace to my heart and the spirit of my home? Tomorrow will take care of itself. This doesn’t mean that I am not dreaming of the future, hope and praying for health and healing in our house. Dreaming of the day we will sit on a beach and feel the warmth of the sun on our faces. Dreaming of watching Evelyn, Christian and Ryan playing on the beach while Chris and I watch with joy in our hearts. Still there are many moments in our lives right now that bring me such intense joy. Watching Evelyn give Christian a hug as he heads out the door for his chemo. Listening to Ryan toddle around the house yelling out, “Ebby! Ebby!” Listening to Christian quote lines from Home Alone and then giggle quietly to himself.

Post chemo - a little sleepy

I am striving to have this peace in my heart all the time. If I wait for ‘that day’ on the beach to enjoy my life and my kids, I would miss so many opportunities to enjoy my life and the gifts that have been bestowed on me. Because that day on the beach is going to be great but it will end and then life will move forward again. If I haven’t found a way to find joy in each day then our journey is going to be long and not so joyful! Ok so this sounds all well and good when life is viewed with rose colored glasses but we all know there are tough times, moments when we seriously dislike our spouse (I am trying not to use the word hate!), moments when our kids make us want to scream, moments when we want to cry ourselves to sleep and stay that way for a week. Then these are the moments when we must rely on our faith the most. When there is no obvious purpose to what is going on in our lives…. We must accept the day we are given and pray for help and guidance to get though these tough times. And then when the days of glory arrive we must remember to give thanks and praise and give all the credit to our God in heaven.

So it is officially New Years Eve. I am writing this blog from room number 1 on the unit. We are here finishing our fifth day of our last five day chemo regimen. We are on another new chemotherapy drug in hopes that whatever cancer micro cells (if there are any!!!!) left in his body are quietly being blasted into oblivion, wilting like a flower without water.  He did so well these past five days…almost no side effects and he is eating and moving around like a champ. Having massive sword fights with his cousins, playing Just Dance on the WII and getting more and more interactive with the rest of the family. I can tell that his nightly feeds are making him feel better and giving him more energy. I am thinking he didn’t even realize how horrible he felt when he was ‘starving’ (so the oncologists say) but now that he has some nutrition feeding his body and his brain he is just thriving. We have a nightly ritual where by he tells me how much he loves me and throws his arms out as wide as they go in order to express the amount of love he has. Well last night he threw the blanket off his legs and stretched his legs and arms as wide as they would go and said, “mommy – I love you this much!”  What a gift.

Tonight we must say Goodbye to Papa Norm and Aunty Sarah. They spent a glorious Christmas with us and we have been so thankful to have them in our home helping us over the holiday season. Papa Norm has become Ryan’s best friend and I enjoy watching Ryan follow him all around the house – longing for a play friend. My heart ached this evening (touch up to the blog this pm) when Papa is giving Evelyn a cuddle good bye, “Why do you have to go papa? I don’t want you to go”. How will I fill this hole in her heart? I am not sure I can.

Don't go home papa!

My cousins supporting the cause!

This next two weeks will be very busy as we prepare for Christian to receive his high dose chemotherapy.  He will undergo no less than 10 tests and procedures to ensure his body is well enough to tolerate the chemotherapy as well as to look for any cancer that may be growing in his body. Everything from dentist’s appointments to bone marrow biopsies. Our constant prayer over the next few weeks will be that all of his tests come back completely clear and healthy. Should any cancer cells be detected he will most likely not receive his high dose therapy.  If his high dose therapy does go ahead as planned we will be admitted to the hospital in the middle of January and he will remain a resident for a while. His best case scenario is a 3 week stay and the worst case scenario is months. Mostly likely he will remain on the unit for about 5 five weeks as he recovers from his chemotherapy and stem cell transplant. There are still many unknowns to us as we are just in the beginning phase of this final blast of treatment. Please continue to pray that Christian gains more and more weight. That each of his tests comes back free and clear. Pray for peace in our home and in our hearts.

Cousins Luke and Shannon supporting the cause

Our prayer for each and every one of you is to have a blessed 356 days – each individually enjoyed and lived to the fullest extent.

My dreams for 2012

1.     Meet more women friends who want to have play dates

2.     Complete my first triathlon in 7 years

3.     That Christian be declared in remission of cancer

MERRY CHRISTMAS

GOD BLESS EVERYONE ON THIS JOYOUS DAY. REJOICE IN THE GIFT OF PEACE, HOPE JOY AND LOVE. 
MERRY CHRISTMAS FROM THE CROWELLS. WHAT A BLESSED CHRISTMAS.

My cousins and I - looking cool!

Can you tell I am just a little excited?

Today i am thankful for:
1. Jesus Christ
2. Left over turkey
3. Dreams of Hawaii

Like father - like son....precious

HOME

First family Christmas photo 2011 - Unit 1 Sunshine room

We are finally home from the hospital. Thank you for everybody's prayers for healing, peace and hope. God bless you all.

Ryan dancing with unit volunteer Veronica...the best!

Ev and Mommy kicking up their heels while waiting for Santa

Today I am thankful for:
1. Eating supper around a table with my whole family
2. Christian walking around on his own
3. All 3 kids in the tub together - playing - just the way God intended them to be

Visit from Jamie's Pre school - thanks for the gifts!

Ryan loves his new bear!

Christian loves the live music - always puts a smile on his face!

Santa and his reindeer finally arrive!

Christmas Blessings

Loving my new Christmas PJ's

It has been a long two weeks. The Wednesday before Christmas and we are still living in the unit while Christian recovers from him emergency laparotomy. There are some families here on the unit - that due to the type of cancer their child has – who rarely get to go home. And I wonder how on earth they survive. Two weeks here and I am ready to pull out all my hair. I am amazed and how much I long to be at home with my whole family together. I pray for the day when Christian, Evelyn, Ryan, Chris and I can spend the morning together eating breakfast and watching morning cartoons. I want to sit on the couch in my PJ’s and with my Tim Horton’s coffee and not move for a week. I want to watch the kids play together and enjoy each other’s company. They are only little but I know they miss one another. Yesterday Ryan came to the hospital to visit Christian. He crawled up on Christian’s bed and started to rub his head then he put his head down on Christian’s chest. I thought I would cry a million tears right then and there. Not in sadness but overjoyed that Ryan obviously misses his brother and is able to show affection and love even though he is so little.

That being said that are a lot of blessings and things I am so thankful for, even though we have become semi-permanent residents of the hospital. We are in, by far, one of the best children’s hospitals in the world and the entire staff make a tremendous effort to make sure the season is special. Santa has come to visit and bring presents twice (once with his reindeer)! There are holiday decorations everywhere and lots of Christmas activities for the kids to do on the unit. At home we have had many visitors who have dropped off treats for our family, meals to the hospital, gifts on our doorstep, offers of babysitting and dozens of Christmas cards in the mail. We feel overjoyed with the support we have received this Christmas and it truly has made a difference in our day to day lives. There are a number of things that Christian does to pass the time in the hospital, some of his favorites are buying Clone Wars episodes from ITunes, playing with his star wars guys, watching Christmas movies (happy to say that Home Alone is back in the top 2!) and lately we have been able to cruise on down to the sunshine room to partake in whatever fun stuff they have going on in there (video games, bingo, making fudge).

Is there anything better than a toy box?

We were also blessed this week with the arrival of Aunty Sarah (Chris’ sister) who came to spend the holiday season with us. One of the most difficult parts of this whole process is how disjointed our families can get, it is so nice to have somebody in the house who can keep schedules for the kids and keep them from feeling left behind (which they all to often are). My mom has finally got her suite finished, which is a wonderful blessing to for her since she has spent countless hours with Evelyn and Ryan while we are at the hospital. The amount of time that people have spent helping us with the kids is remarkable we will never be able to repay. My mom, Papa Norm, Nanny, Kelly and Heath, the Metcalfs, Aunty Sarah, Louise and Tracey, Aunty Dianne, and Bethany are just a few of the angels God sent for Evelyn and Ryan during this past year.

Our most cherished blessing this year is the gift of health and hope. Even though Christian doesn’t have full body health we feel that God is guiding his journey to wellbeing. There are so many things that could have gone wrong for Christian over this past 6 months during his surgeries and recovery. Yet every stumbling block put in his path has been cleared with God’s gentle hand. I feel a tremendous amount of peace and hope when it comes to Christians healing. I believe that God will continue to guide Christian to full health despite the circumstances we find ourselves in. His healing from this past surgery is nothing short of a miracle. When the ICU doctor told me in the middle of the night that Christian needed an emergency surgery there was fear and doubt in her eyes.  Yet the surgery was an absolute victory.  In his room that next morning the Surgeons are telling us that things are very dicey, dangerous and things are going to get a lot worse before they get better. I believe deep in the woods was a phrase I heard once. Yet again nothing transpired and Christian responded perfectly to the efforts of the ICU staff. No major fevers, no infections, no fluid imbalance problems. Just peace under his eyes as he sleeps and dreams of pizza. His first words after he was extubated were “hungry”. This is how I knew that everything was going to be ok.  

Today is the first day that Christian has been completely off his narcotics and he is looking great. We are on a course to be home by Friday – just in time to decorate a tree, make some cookies and watch some Christmas movies by the fire. His bowels are working well, he has very limited pain and his weight is increasing. Our little minor stumbling block for this week was a small bed sore that we caught just in time and is healing nicely. This morning we are having a new NG tube put in that we can hopefully keep for the next while. Thankfully the staff at the hospital has agreed to do the procedure under sedation so Christian won’t have any stress about it. We are praying the tube will allow us to feed him at night and help him to gain the weight he so desperately needs. Chris and I desperately need some sleep and family time together. Our communication skills are getting really good as we shout out words to each other as we tag hands in the hallway when we switch shifts at the hospital. Yesterday I forgot Evelyn in the car (yes I have become ‘one of those parents’) and it was a real wake up call for me that even though I may not agree, my brain wants some sleep!

Christian and Aunty Dianne

Right now I look over to his bed and his eyes are alive with excitement as he watches his newest episode of the Clone Wars. He smiles and laughs at the funny parts and calls me over to watch the battle droids get blasted. He loves it! And my heart is so full of joy that he can have some peace and happiness in his day. There are many more blessed days to come and I look forward to them but I am also learning to take these small moments of joy and soak in them until another one comes along. 

MERRY CHRISTMAS

Today I am thankful for:

1.     ITunes staff who quickly fixed my ‘broken’ ITunes card

2.     NG tubes put in under sedation

3.     Hot shower and coffee in the morning

Dear Christian

Dear Christian,

I have been writing you letters since you were a little baby. Never once did I imagine that I would be writing you a letter from your hospital bedside while you slept. I am sitting in our unit room, which we have so wonderfully decorated for Christmas. Uncle Ian and Grammy spent the whole morning putting up lights, a Christmas tree, ribbons and wall decorations. You have the best room in the unit and it helps to bring a little Christmas cheer to our day. I ran around all day yesterday looking for fleecy Christmas sheets for your hospital bed but to no avail.

All together enjoying Christian's room - yes that is a mitten on Ryan's head

I started writing letters to you when you were only a few months old. Actually, writing isn’t the right word – I have been typing you letters. I have horrible penmanship and my brain works faster that my hand so letters never turn out that good. I wanted to remember you at each stage of your life. You are our beautiful boy and wanted to try and remember everything about you getting bigger and learning new things. Reading back over the emails I sent you brings back so many memories and exciting times for your dad and I as we experienced a little person for the first time in our lives. You are so special to us; you have this amazing quality about you that makes everybody like you. People are drawn to your sweetness and even though you are only four years old you have the heart and soul of the most beautiful person I know. You are constantly thinking of other people and wanting to ensure that the people you love the most are happy. I can’t remember how many times over the past year that you have taken my chin in your hands while I cried. Like I am the child and you are the adult trying to console my hurt. Your heart is bigger than your body and it shows the true depth of your soul.

One of our favorite ICU nurses - Troy

"Battle Scars"

You are in the fight for your life. You are a fighter. This is been a long long year – a struggle for you from the very beginning. And hurdle after hurdle you have overcome these obstacles with the strength most adults could never comprehend. Mommy and daddy pray for you all the time. There are lots of people praying for you. People all over the world, all ages, times and frames of mind. And God is listening to the prayers of his people because the barriers you smash and the strength with which you smash them are God given. God is in you and of you and all about you. I am so excited to see you grow up; I am excited to see the places God is going to take you. I remember hearing a motivational speaker talking one day about following your dreams. He said, “You can not do anything you want to do but you can do EVERYTHING that God wants you to do”. Meaning that God has given each of us special gifts, things we feel most strongly about. The things we are passionate about are placed in our soul by our maker. He is placing emotions and strength inside of you that are going to be so great.

This past year you have gone from a little toddler with cute, shaggy brown hair to a little man with no hair! You have battled 40 weeks of chemotherapy, 6 weeks of radiation, a 12 hour resection surgery (one of the biggest in the Alberta Children’s hospital’s history), more chemotherapy, crazy, insane abdominal pain, months without proper eating, no less than 8 tubes shoved down your nose, emergency bowel obstruction surgery and countless boring hours, days and weeks in the hospital. And I just wanted to make sure you knew how proud of you I am. You have shown mommy that you ‘can do all things through Christ you strengthens you’. You have shown me the power of prayer, hope, faithfulness and love. You have shown me patience I didn’t know existed. You have shown me kindness towards your siblings by sharing your Bingo prize toy selection with your sister and sharing your hospital bed with your little brother.

Amazing how the this looks like the Star of the North

Most importantly I wanted you to know that your sickness (as weird as this may sound) has made our family strong. As a whole we have cried together, screamed together, asked the question ‘why’ together and struggled together. And as a family we have learned that we can lean on God for the things we need. We have been directed to a better life with open eyes. We have been given the glimpse of death and learned to reach for the stars each day. Mommy and daddy certainly don’t live each day to the fullest but we try. We are trying to make you proud and be good parents for you. I want to make sure you know how much I love you and Evelyn and Ryan. I want to make sure you know how much I love your daddy. I want to make sure you know how important Jesus is in our lives and that He truly is our saviour. He is the saviour of our souls and He is the saviour of your health.

Thank you cousin Noah

The Doctors here at the hospital have made many comments about how strong you are and how you seem to fight with an inhuman strength. How a little boy who weighs only 26 lbs can continue to get up after continually getting knocked down. The nurses in the ICU and the oncology ward reverently give you the utmost praise for your ability to hold strong. So proud of you! Proud even when you say to me, “Mommy I can’t do this anymore”. Everybody has their limits and you have already learned yours.

My prayer for you as an adult is that you also learn to love and trust God. That you would love and trust Evelyn and Ryan and you three will remain the best of friends. You will tell each other things you don’t want to tell us. You will confide in each other and always be there for each other, even when you are 50.  I pray that you get the chance to read this letter and the whole blog that comes before this. I pray that you will sit down one day and read these words and know how amazing you are. I pray you will appreciate the gifts the Lord has given us. I pray you get the chance to get married and have children of your own. Your daddy says he wants you to be able to give these written words to your kids so they can know the amazing things their daddy overcame to give them life. I am so thankful for the gift of you, the gift of Evelyn and Ryan, the gift of your daddy and the gifts of hope. Merry Christmas Christian.
Love
Mommy

Boy of steel

12 hours post op

December 11^th and it is officially two weeks to Christmas day. Normally this time of year I am jumping off the walls driving people crazy with my incessant Christmas movie marathons and Christmas music. I can never seem to get enough Christian joy and spirit into this amazing holiday season. But this year Christmas means something completely different. I am writing this blog from the ICU. Last night Christian went into the operating room at 2am for an emergency laparotomy to decompress his abdomen. This evening he is resting semi-stable in the ICU as we wait for his abdomen to heal, yet again from surgery.

Uncle Peder came bearing gifts! YUM

Thursday afternoon we were transferred to the ICU because the increasing amounts of pain medications he needed required that his vitals were monitored very closely. As the day progressed he seemed to be having escalating pain that couldn’t be tamed. Sharp gut wrenching pain that makes me want to jump out a window rather than watch his eyes light up with fear as he pounds his head and the bed trying to cope. Between the wave like pains, he had a few moments of levity and release. Especially with uncle Peder coming to visit and play with his Star Wars guys. Unfortunately the intensity and frequency of his pain increased throughout the night and into the next day. A projectile vomit at 1:30am was the indication sign they were waiting for that something horrible was going on in his abdomen; they immediately mobilized the surgical team.  The scary part of this whole scenario is that he was, and is currently, neutropeonic. Meaning that he has no immune system from his last round of mega chemo. But in order to prevent something catastrophic from happening they had to open him up to determine what was causing his intense pain. What a horrendous feeling to know that they are going to operate on one of the "dirtiest" parts of the body while he has no immune system. Knowing full well that a bad infection and fever could be the end for our little man. The next few days will be very tumultuous as his counts return to normal and his body begins to fight off infection and other post operative issues.

Transfered to the ICU

Thankfully when the surgeons opened him up there was no leaking bowel or damaged bowel or any bowel repair to be made. There were some adhesions that needed to be released thus decompressing his abdomen and allowing his bowels to once again move freely. When the surgeon walked into our unit room at 430 it had only been 2.5 hours since I left Christian. I knew it was either really bad or really good. So I was ecstatic when he reported that it was in fact the best case scenario and Christian was already in recovery. Before most of my family even knew something horrible was going on – it was over. I immediately felt shameful that I had not trusted my heart that Christian was going to be lead through this journey safely. I had so many doubts cast into my mind during the surgery - it was all that I could do to lay in our unit bed and wait. I couldn’t talk or move – I felt as though I couldn’t even breathe. Was I ready to let Christian go?  When the good news came that Christian had done marvelous my mind played over all of the amazing victories that Christian has experienced. Circumstances that seemed insurmountable, he smashed down with a ridiculous amounts of strength. Our ICU doctor, Dr Megan Mahoney, said yesterday before it was determined that he needed surgery, "I want you to know that I am very worried for Christian, he is really sick.... he is small and skinny and only 26 lbs, but he is 26 pounds of pure steel, he is the boy of steel”.

We had so many prayers and messages of hope come through for Christian yesterday. We were lifted up by friends and family: Pastor Doug driving to the hospital at 330am to be with us during surgery, Uncle Peder and Auntry Ryan spending the day playing Star Wars, Laura G dropping off treats –exactly what my tummy would have ordered! And on and on. Random cards and messages of hope from our families and our Airdrie families (thank you Magas family) that arrive just as we needed them. God is providing for us through our community and our families. We prayed and prayed yesterday that we would be buoyed up. I was at the edge of my limits and felt very despondent. Then all of a sudden I had a peace come over me like everything was taken care of. And it is. It started over 2000 years ago with a small child born in a barn – He came to save and love us all. This year for Christmas I still want to watch my movies (in fact I am on my second one already tonight!) and make cookies and put up my tree; but I want to make sure that the gift of Jesus, the gift of grace, hope, and faithfulness are the focus of our celebrations. Because these are the gifts that are guiding us through this thorny time. These are the gifts that supply Chris and I will the ability to live each day and move forward with Christian’s treatment with peace in our hearts and hope for our families future. Merry Christmas.

Today I am thankful for:

1.     Home Alone

2.     Chips and Dip

3.     The large stack of Christmas cards Christian got in the mail on Friday. God bless you all. 

Fallen

Christmas 2010 (three weeks before diagnosis)

Sitting here at my computer tonight, I am trying to find the words to express the events of this past week. I guess a few words that come to mind are frustrated, exhausted, sad and scared. And every single one of these emotions Christian is feeling to the utmost degree. I feel as though as a family we are just hanging on by a thread. All five of us holding onto each other, dangling over some theoretical ledge, just waiting to fall into the depths below. I can picture us and I see the scared look in our eyes – my kids looking to me for support and assurance and I don’t know if I have it in me to give anymore. Each day Chris and I get a little more frustrated and a little less focused. The only peace left is knowing that if that string does snap and we fall, we will land gently into the hands of our Father who has promised to snatch us up when we plunge.  Perhaps we have already fallen and this is what if feels like to be held up by those we love and who love us in return. So many people came to our rescue today. Dianne, my sister in law, showed up with coffee AND Christian’s favorite play friend – Isabelle. What a combo! Followed up with Louise, Tracey and the whole gang who showed up at our door this evening bearing food and tools to help finish my mom’s suite. An AE Bowers family bringing us a card and message of hope. My brother Peder who went to the hospital so Chris could run around and find food that Christian might eat. I think Peder is Christian’s second favorite play friend because, “Uncle Peder makes good star wars noises”. He said to Chris tonight after my brother had left, “Do you think uncle peder could come back again, when I am not so tired?” My heart is aching. Aching for this little guy who is at the end of his rope. Chris and I are so frustrated with all that is going on with Christian – I can only imagine how a 4 year old deals with the same feelings and insecurities.

We were discharged from the hospital over the weekend after our six day chemo stretch and the roller coaster began. Christian battled the NG tube like a ferocious beast. He is so stubborn and refused to swallow with the tube in his throat. Which means he carried around a tub and spit into it whenever his mouth got full of saliva. And when he gagged on his spit he would throw up and out came the tube and life was good again, for him. Unfortunately that tube is essential to him right now. It is the only way he can get enough nutrition into his body. But we can’t seem to get him to keep the NG tube down long enough to give him any feeds. We are on our 5^th tube and each insert is traumatic and terrifying for Christian. Today our oncologist told us that Christian is literally starving. Wow. It sounds easy enough to fix. Eat some food. Except Christian is plagued by constant stomach pain that we cannot seem to get a hold of. Tonight while in hospital he got some morphine and he seemed much more comfortable, so perhaps this is what he needs. I don’t know what Christian’s immediate future looks like but we pray that his tummy is pain free, he gains some good weight, his feet stop hurting, he gets better balance and strength and most of all I want to see confidence and assurance in his eyes. I want him to be hopeful and not so disheartened. I want him to know that things are going to get better and he is not going to be sick all the time. There will be a time when he won’t have pain and he will be able to eat the foods he wants. I just want him to be able to be a four year old boy. To be excited about Santa Clause and decorating a Christmas tree.

Christian, Grammy and Ryan Christmas 2010

Christmas really is very different this year. The things that I used to be so excited about are not so exciting anymore. Whether I have lights on my house or a real tree in my living room, don’t seem to matter when we are not all together as a family. I hate being separated. I don’t like going to bed at night and not having somebody on the pillow beside me. To be honest I am glad when Evan comes running out of her room because she is scared. Because this means I have somebody to keep me company. And I don’t spend so much time thinking about how much I miss sharing my bed with Chris and Christian. How much I miss feeling his skinny little leg cross over mine. I miss when he will randomly grabs my neck and give me a squeeze. Making sure mom is ok. But for now he will live at the hospital until he can get his nutrition and hydration stabilized. He needs to be able to gain some weight and get stronger. Hopefully by next week we will be safe to bring him home and spend a few nice days together with Papa Norm who arrives tomorrow. It will be so nice to have some extra help around the house.

So for now the trials continue and each day is a new venture and brings hope of healing and health for Christian. Pray for healing, weight gain, a pain free body, confidence to keep fighting and peace in our hearts. Thanks for reading.

Uncle Peder making us Christmas Eve pizza's!

Today I am thankful for:

1.     Laughter with friends at 10pm at night

2.     Watching Christmas movies with Evy at midnight

3.     Louise’ amazing chocolate chip cookies!!!!