DRUMMER BOY

One of my precious smiles...

Merry Christmas from the Crowell household! Today was a great day in our house as we enjoyed a lovely Christmas morning, afternoon and evening surrounded by many family members. I will readily admit that until this morning I was full of anxiety, wondering whether or not Christian would make it to Christmas day. I am sad to admit that these were my thoughts yet I never actually spoke these words to anyone. Doing so would admit that my faith and belief in a complete healing were false and I was only putting on pretenses for show. This is really silly because God already knows my heart and understood my fear. I was scared; I was petrified that for the rest of my life the Christmas holidays would be a scar that never faded. I feel a deep sense of relief to have enjoyed these days with Christian and I have decided to let go of the prayers of desperation and move into a mode of thanksgiving and been still. Trying to calm my mind, my fears, and my worries and try to hear God leading us.

Most of my time spent here on the couch with my 

Love my daddy!

Only three days ago we ended up driving to the hospital early in the morning after Christian spent most of the night screaming in pain. Pain that couldn’t be controlled with morphine or love or anything else I had to offer. The day before Christmas Eve and I was wondering if this trip to the hospital would end up being a permanent situation. Would we get to come home for Christmas? Well obviously the answer is yes! I put a word out to our faithful prayer warriors and within 5 hours his pain under control (we are so grateful when the answer to pain is poo!) and he rested comfortably for a few more hours before we were allowed to leave. I was overjoyed to bring him to Christmas Eve church service (even if he came in his PJ’s and slept the whole time!) and even more overjoyed when he happily got out of bed this morning and walked downstairs to see what Santa had left for him.

I am going to submit a prayer request in the middle of my blog because we need everybody to know how dire this situation is, how desperately we need prayer and ultimately healing for Christian. Christian’s abdomen is grossly bloated and swollen. It is so full that his surgical scars are stretched and red, his stomach muscles work extra hard to take each breath and his bowels take a beating every minute of the day. His tumor has grown significantly and has taken over that side of his abdomen. We need prayer that this tumor would begin to shrink (or completely disappear!) before he suffers from an inevitable bowel obstruction.

Sibling love....

Our new regimen of drug cocktails seems to keep him fairly comfortable but unfortunately he is groggy, tired and stoned for most of his day. I rejoice every time I see a true smile from his little face. It seems his moments of pleasure are few and far between. He does still love to build and play with his hero factory guys and watches his favorite TV shows on the couch. But it seems the drugs have stolen his ability to respond to anything with a positive emotion. His movements throughout the day are from our bed to the couch, to the bathroom and back to the couch (the last step repeated several times a day!) On good days he will make his way down to my mom’s house and visit with her and put together some Lego or play a game of Wii bowling with Papa and daddy.  I am very grateful that he wants to eat all day long (grazing we call it!) and clings to his favorite foods of Lipton noodles, crackers and cream cheese and grilled cheese sandwiches.

Christmas morning

Please keep lifting Christian up in prayer believing that his journey will lead to an amazing glorification of what God can do right here on earth. The bible says that God is the same yesterday, today and tomorrow. And in biblical times Jesus healed so many. So He will heal now – just as He did back then. But a childlike faith and belief in God’s ability are vital. There are times in the Gospels when people were healed just by touching the garment that Jesus wore – because they believed so strongly that He could heal. Jesus hasn’t changed, but our faith has because we don’t ‘see’ the healings, social media doesn’t cover them and they don’t make the headlines. But God heals and miracles happen everyday. So please pray for Jayden and Christian, for healing in the land of the living. For full restoration of their bodies, that they would be blessed 10 fold for the time they have lost while fighting for their lives. As I write this blog and look back at my previous entry and I am frightened when I see how fast he has declined in a weeks time. I need to constantly remind myself that God’s timing is perfect but I long for Christian’s suffering to be over – a mothers heart can only take so much.

This Christmas season as I struggled to ‘hear’ God speak to me but I found myself very drawn to a few particular Christmas songs. One of them was “Drummer Boy” by Mercy Me. For some reason the words of the song jumped out at me as he sings;

Shall I play for you?

Shall I play for you?

Mary looked at me and nodded

The ox and lamb kept time

I played my drum for him

I played my best for Christ

I played my best for Christ
www.youtube.com/watch?v=7Y09LZ5N42E

And all of a sudden it wasn’t just a Christmas song I had heard every year for the past 37 years I was there in the stable with Joseph and Mary and baby Jesus. I can see the little shabby boy standing there with his drum, timid but fully grasping the significance of the little baby born that evening in a stable. He had nothing of monetary value to offer as a gift to Christ. But what he did have to offer was himself and the gift the savior Himself has bestowed on the little boy. And he wanted to play for the little baby, he wanted to make the baby proud with the only gift he had – himself. And it made me do an inward and I took a hard look at myself and began to think about the gifts that God has bestowed on me. Am I using them to glorify God?  I am not sure I even know what they would be, perhaps the gift of leadership and determination? The drummer boy reminded me that every time we use our gifts to glorify him we make him smile. When we use our gifts to help others, those in need or those who can’t help themselves, God smiles. He doesn’t require extravagant gifts, sacrifices or magnanimous show of ‘religion’. What He does ask is that we use the gifts we are given to bring glory to Him and help our neighbors.

Our beautiful Rapunzel!!!

Today I am thankful for:

1.Songs that reach right into my chest and grab my heart

2.Turkey Dinner!!! YUM

3.Watching Christian open his Christmas presents with happy emotion and gratitude. 

Don't just hope....BELIEVE

All IN HIM

Dear Friends…

These blogs are getting harder and harder to write. Our boys are sick and there is no way to sugar coat things. Jayden is plagued by constant pain and headaches, sleeping copious amounts of the day. Christian is a serious color of yellow – letting us know that his liver is being encroached on in a serious way. Mercifully his pain is under good control and he has many moments of levity during the day. We find fun things to do that do not require much energy; he loves to build puzzles with Grammy, work on building his Lego Star Wars, watching Hero Factory over and over, setting up his Star Wars guys and just hanging together on the couch watching Disney Junior.

I don’t want you to sit at home with your head hung down in misery. I want to encourage every single person reading this blog. I want to encourage you with the love of our God, a love that our English language doesn’t have the words to describe. Ephesians 3:18-19 says “…together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ and to know this love that surpasses knowledge of all the fullness of God”.  I trust in the Lord to guide us, protect us and preserve us. He promises this to us in his word. I know that God has a great plan for Christian and Jayden. Their situation may seem insurmountable but with God, nothing is to big or scary. One tumor or a thousand, one second from death or a year – God will work all things out. So please do not loose heart or be sad. Believe with all your heart that God will finish the good works He began in these beautiful boys. Don’t bow your head and beg God for a miracle – turn your eyes up to him and proclaim healing. Know that God will not do anything that is not good. This may be beyond our human understanding but we must trust. If you don’t have this trust in your heart then I ask you right now to drop to your knees and ask God to come into your heart. Ask God to show you love that you have never known or experienced. Accept Jesus Christ as your Lord and Savior knowing that God gave us His only son so that we could have this opportunity. Christmas day is not about presents, turkey, candy, chocolate or trees. Christmas day is the day that God sent his son for us. Would I be so willing to hand over Christian? I don’t think so, but this is what makes God’s love so unbelievable and undeniable. This is the measure of God’s love.

Gifts from the Oncology family

The next verse in Ephesians states, “Now to him who is able to do immeasurably more than all we ask or imagine….” Basically saying that whatever request I come up with in my time spent praying – God’s plan is more magnificent, more grand, more glorious and more wonderful than anything my human brain can conjure. God is for healing and life. So pray with conviction, belief and as much appreciation as we can muster. God wants us to look up to Him and trust, knowing that He will not let us down. No matter how horrible this situation may seem, if you keep your focus on God and not what our human eyes can see then peace will come to you.

Carousel at Chinook mall

Our prayer requests for today are: Please pray for peace and patience for the Phaneuf family while they try to help Jayden through this difficult time. Peace for Chris and I as we try to make Christmas as special as possible – to honor the true meaning of Christmas. Please pray for physical, earthly healing for our two boys. That Christians tumor would shrink and his skin color would be white again and he would be able to eat a good solid amount of food. Pray that Jayden’s tumors would disappear and our Christmas miracle would be complete. And all the Glory belongs to HIM.

We have been so blessed these past few weeks by so many different people in our community. These are things I am thankful for today:

1.GMHS Band putting on an amazing concert with Christian in their hearts

2.Amazing staff at Heaven's fitness (and uncle Peder) for putting on an awesome dance party for Christian

3.The ladies from our church constantly bringing us treats and suppers.

4.The woman from AE Bowers school coming over to ‘freshen up’ our houseJ

5.The Muriel Clayton basketball team (girls) honoring Christian with CC on the back of their warm up jerseys’.

MOCKTAILS AND MISTLETOE

Dear Christian. My heart is heavy for you tonight. For the past two days your energy levels have been extremely low, as is your enthusiasm. I constantly ask you if you are not feeling well but you simply reply to me, “no I feel fine”. But the sadness and resignation in your voice tell me different. You are tired, not just physically tired but emotionally tired of this journey. I imagine it would be like having the stomach flu for two months. As your mommy I would whine and wail after only two days of being sick -  but you my might warrior – you just battle on. We stopped your chemotherapy last week at the suggestion of our medical team. They felt the disease was progressing despite the chemotherapy (which was making you soooo sick) so we are truly now investing everything else in our God, our Healer. The only medicine you are taking now is to control your pain and try to ease your discomforts. I have been praying constantly that God would speak to your heart, and hopefully bring you some peace. I know he has been faithful in helping us control your pain as you seem to be relatively comfortable but now I pray He answers this prayer for enthusiasm and zeal. The return of the Christian who is excited to play and visit with family.

Puzzle path with Izzy - see the determination????

I am also praying that you could gain some weight. You have dropped down to that dangerous level of weight loss where I can see every vertebra and rib in your body. Every ounce of extra fat has been used. I pray that every morsel of food you eat has a 100 fold effect in terms of energy and calorie. There is so much to pray about and so many things “I want” but over these past few hours I have been resigned to the Lord’s Prayer knowing he already knows the desires and longings in my heart. I am prayed out so I find comfort in knowing that others are praying on our behalf, on behalf of Jayden and our families. I know as we speak people are hungry as they fast for these two boys.

Matthew 6:8-13

….for your father knows what you need before you asking him. “This then is how you should pray: “’Our Father in heaven, hallowed be your name, your kingdom come, your will be done, on earth as it is in heaven. Give us today our daily bread. And forgive us our debts. As we also have forgiven our debtors. Lead us not into temptation, but deliver us from evil’”

MERRY CHRISTMAS!

So my sweet Christian I just want to remind you how proud I am of your. How patient you are and how your love just flows like a river whose banks are about to break. On an hourly basis you tell me how much you love me, how special I am. Your skin is off white and pale and your eyes are a yucky tinge of yellow, yet the beauty of your soul just shines through you. Yesterday when we were driving I was trying to explain to you why you have been sick for so long, and how we have tried to make you better but it is just not working. Now, I explained to you, it is up to God to come up with a way to make you better and we are trusting in Him. I told you how proud I was that you continued to fight and be strong, that I was so full of love for you. I asked if you knew these things that I was telling you, you looked right at me and said, “Well I do now!” I totally busted a gut! You are so hilarious – it makes my heart pound for you even more.

Best friends forever......

Our emotional fatigue is taking its toll on our bodies; almost all of us have a horrible cough and Chris has now developed stomach ulcers (sorry Chris if you didn’t want to share this info with the rest of the world!) But the members of our church and our families are buoying us. I cannot tell you the relief Chris and I feel as his parents make their way out west for Christmas. The extra pair of hands to keep kids happy and busy, the extra ears to hear our concerns but mostly the amazing atmosphere of family coming together in one space to share this most amazing occasion of the birth of Christ. The joy of watching the kids on Christmas morning, the peace of the Christmas Eve service and just being surrounded by people who love us and we love in return.

Christian we are so blessed to live in this amazing city with our friends and church who support us non stop, to live in this province with an amazing hospital to take care of you, to live in this country with a health care system that will pay out millions of dollars to try and save your life. We are so blessed to be in a situation where we can have physical comforts amidst our pains and anxiety, that we have friends who come to us when we need them. We are blessed by God who hears every single one of our prayers and continues to bless us over this life changing Christmas holiday.

Mostly I am grateful that God is bringing together all of these families, friends and people so that as a congregation and community we can witness the amazing healing that is going to happen for these two boys. Until then, Praise be to God and all the Glory belongs to HIM,

Hockey anyone????

I would like to plug an amazing event that our friends are putting on for the Phaneuf family. On December 20^th in NW Calgary there will be a “Mocktails and Mistletoe” event featuring an intimate concert by George Canyon (as well as silent auction) and all proceeds go to support “Jayden’s Home”. Please see the link below for more information. Please put on your pretty’s and come and join us for an awesome evening of music and friendship in support of our dear friends: Doug, Loralie, Megan, Nicky and Jayden.

https://www.facebook.com/photo.php?fbid=10151163096722337&set=oa.123034147858399&type=1&relevant_count=1&ref=nf

Jayden and Loralie in the clinic

Matthew 11:28-30

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Christian's photography....he is so keen:)

Today I am thankful for:

1.Puzzles with Christian and Grammy

2.Afternoon hot tub dates with uncle Peder

3.Random goodies from families who drop off food to our door – God bless you

4.Hanging out with Evan under our Christmas tree all at night while she talks to the ornaments and tells them stories (apparently they talk back to her!!! Should I be worried???)

NB – Crystal come back for that hug…I would be so blessed to meet and chat with you anytime! 

Faithfulness

Cinnamon buns and mommy and daddy's bed - MY FAVORITES!

Well I am not really sure where to begin. It is Sunday night and I am resting here in our bed with Christian, watching Karate Kid for the second time today. Wow - I really don’t have the words to express, or to explain the events of this past week. He has been sick since his last dose of chemo (over a week ago), which we knew was going to make him sick but he just never seemed to recover. He just seemed to keep on getting more and more ill. Despite a visit from my brother and his two young kids (which should have provided him with hours and days of fun) his enthusiasm for everything normal to him was gone. By Friday he couldn’t even get out of bed, he couldn’t lift his own head. Horrible pains in his stomach, constant fevers, bone pains and headaches seemed to be relentless. So in fear, Chris and I packed him up and headed to the hospital praying that his immune system was intact. Praying that there would be an easy answer to what was going in inside of him. Of course the unspoken words were obvious…was this what the end were going to look like?

Merry 'early' Christmas from the Sanders family

We were quickly taken care of at the hospital, blood tests, hydration, medicine, anything and everything to make him feel better. The real kick in the pants was meeting the palliative are team. I cannot describe how difficult it is to be in a place of science that has no room for God. I place with no hope, no encouragement, no faith. I prayed out loud in our hospital room that science and the enemy wouldn’t be able to speak any negative words to me. That I would be shielded by God’s words and promises. I took everything the doctors had to tell me, everything they said we needed to do to make Christian feel better, then I took it to God. I asked him what we should do. We were told his electrolytes where at critical levels and his liver was not functioning properly (assuming because of pressure from the tumor). So they gave him some fluids, some meds and we spoke with the medical staff briefly (I told the oncologist I didn’t want to know about anything that couldn’t be fixed). Finally we packed Christian up and headed home (of course after a quick stop at the Store Upstairs!) He looked truly horrible. His skin was pale and yellow, the whites of his eyes no longer white, dark circles under his sunken eyes and the spirit of joy gone from his being. I couldn’t stand him looking like this for one more minute.

Is this right?

I immediately felt like I needed help praying. I wanted to be surround by people who believed, as I wanted to believe. I asked some people from our church to come and pray over Christian, hands on prayer. Touching his skinny body, his fragile fingers and toes, his sweaty head of hair. We prayed and prayed and then I prayed some more. Around 1:30 am I gave him his nighttime meds and prepared for a long night of pain medication and trying to calm his anxiety that rose with every attack of pain. We prayed about a dome of protection around Christian as he slept that night, I prayed that God would take care of this so that I would not have to watch him suffer anymore. Well at 10am the next morning I woke with a bit of a shock. He had not needed one dose of pain medication, the yellow in his eyes and skin had faded and he had asked me for juice on three separate occasions that night (crazy after not really drinking or eating much for three days). God answered our prayer that night. His faithfulness to His children is immeasurable. I keep referring the one of my new favorite passages from the bible,

Ephesians 3:20,

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us”

Gingerbread houses with the cousins...what a great way to spend Saturday night:)

This verse reminds me that no matter what I ask for, what grand plans I can come up with in my mind, God’s plans are always so much better. He knows so much more, He already knows the desires of my heart and exactly how to fulfill everything I need. So while I am waiting for God’s plans to come to fruition I am trying to learn patience, understanding, compassion for others, and developing my own relationship with God.

All I know for sure is that God has truly revealed himself to us again. The doctors we spoke with on Friday were convinced we would need massive amounts of pain medication, they only see death. I am so thankful for our God who only sees life. Who despite the situation, is working things out for our good. That Christian, whom they were sure was on deaths door, is now rejuvenated and smiling. And all the glory belongs to God.

My prayer requests for this week are: Please pray that both Christian and Jayden would have peace in their hearts, that they would have some type of spiritual understanding about the situation they are in. Peace that we know only God can provide – even for a five year old. I pray that God would shrink the tumor in Christian’s abdomen, relieving the pressure on his liver. I pray that Evelyn and Ryan would have the same peace and reassurance that Jayden and Christian need. I pray for peace for Chris and myself as we cope with the stress of our situation.

Today I am thankful for:

1.Early Christmas from Julia Sanders and her family!!! What an awesome Saturday morning!!!!

2.Goodies from the church (thanks Trinity and Roslyn)

3.Random strangers blessing our family – beyond measure…thank you

4.Ladies from our church willing to come any time of the night for prayer, God bless you

5.God listening to and answering ALL of our prayers

LIFE LOTTERY

Waiting for his hair cut....watch out!

Tonight as I lay beside Christian while he tried to fall asleep I put my hand on his chest and prayed. But the words wouldn’t come tonight. All I could muster was, “Lord I am tired, weary, scared, frustrated – won’t you please come?” I thought about miracles, I thought about every time I heard about a miracle on TV or in the newspaper. And I wondered yet once again if this was to be for us. Yesterday I equated it to winning the lottery, only not a lottery for money but for life. I don’t really think anybody expects to win the millions of dollars but they still play. And tonight I asked God if He would be so gracious as to grant us the life lottery. I don’t want millions – I just want to keep me son. I remember after Christian’s last surgery how elated Chris and I were when we realized that God had reached down and touch Christian. Earlier on that day we were sure his time on earth was limited to days but then we had being given this gift of life. We honestly felt like we had won the lottery – I got to keep my son! And now once again I pray for that same feeling.

He loves the nurses on Unit 1 - thanks Laney and Kathy

Getting chemo

As I describe these feelings I can feel a pull on my heart saying, I need you to pray with belief not just hope. God wants me to know He can of course do it – He can move mountains, He can crush cancer. So instead of saying, I hope You do…I need to pray, “I know You are going to save our son, I know You have the best plans for our family and I am so excited to see what is going to happen. And in the meantime I will try to wait patiently. I have been listening to a song by John Waller called, While I’m Waiting. God is yelling at me that I need to be patient and that I can’t wait until a miracle happens to praise Him. Because He has already done so many amazing things in our lives. Our family has been blessed beyond measure over the past two years. Even being in this place where we are locked in a staring contest with death, we must find goodness. To be in this place and to be ok. I am not going to sugar coat things, I am scared beyond measure, I am so tired and weary that my head doesn’t fit right anymore (kind of like the Grinch). I drop to my knees and beg God to give me the grace and strength to survive each day. And He gives it freely. I am sure most people wonder how on earth you survive wondering each day if your child is going to die. It’s horrible, but God makes it bearable. Hope makes it tolerable – knowing that God’s magnificent arms are around our family makes it manageable. When you have nothing left to do but pray, hope and believe, then we learn what it really means to trust God. There are no more safety nets or harness to catch us. God is our safety net, and it’s the only one we need.  

Nothing better thana parcel in the mail!!!!!!!!!

Kids love their new hats!!! (thanks Broz family)

Christian continues to battle, battle the effects of chemotherapy (constant nausea, sore tummy) and more recently bone pain and headaches. The doctors told us last week that the tumor is probably bigger. I didn’t even lock eyes with our oncologist while he relayed this information – I already knew. At this point it doesn’t matter if its large or small, here or there. The only way he will live is if God grants us this miracle. His energy levels are at an all time low, just leaving the house to go to the grocery store is a chore for him. Play is limited to video games, although we had a modified soccer game in the living room today. He has moments of brilliance where he makes us laugh but the effects of the steroids he is taking make him a ‘tad’ grumpy and sometimes downright intolerable.  He still loves to sit down and play with his Star Wars guys and Hero Factory men. Lately he is taken to decorating the house for Christmas and wrapping present to put under the tree. He was thrilled this morning to find his “Elf on the Shelf – Eli” playing with his hero factory toys.

BEFORE....such a silly pants!

After

So the waiting continues and in the meantime we will try to live as full as possible. We are looking forward to Chris’ dad coming to visit – another person to help distract Christian from his pain and anxiety. Another person to love Evelyn and Ryan and provide my mom with her daily dose of sarcasm! Please continue to pray for Christian. Specifically we are praying for energy for him to play and enjoy life, that the tumor in his abdomen would cease growing and begin to shrink down – alleviating his pain. Pray that Chris and I would stay solid and on the same ground as we pray for healing for our whole family and specifically for Christian to be restored to his full health and strength. I pray Christian’s hair doesn’t start to fall out and he can continue to feel as much like a normal little boy as possible. And finally I pray for peace for Christian as he tries to figure out what is happening to him, to his body. As he deals with pain and discomfort on a daily basis, as he discovers he no longer has the energy to play the way he used to or wants too. 

Before his hair cut.....my hockey hair!!!

I would also ask that you continue to raise your hearts and your hands in prayer for the Phaneuf family. Please pray for strength and patience. Please pray the God continues to fill them with hope as they faithfully wait for God. Pray for Jayden’s complete and full healing.

Putting up the star with Daddy

Today I am thankful for:

1.walking around the mall with my mom on a quiet Tuesday night

2.Watching Christian raise his hands and sing out to God as he listens to music - even the words he doesn’t know!

3.The look of a gigantic 10ft, Clark Griswald Christmas tree in my living room!

I’m waiting; I’m waiting on you Lord

And I am hopeful

I’m waiting on you Lord, though it is painful

But patiently I will wait

I will move ahead bold and confident, taking every step in obedience

While I’m waiting

I will serve you while I ‘m waiting

I’ll worship while I am waiting

I will not fade; I’ll be running the race, even while I wait

-While I’m Waiting – John Waller