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Stree hockey with my cousins

Dear friends,

As many of you know this has been one of the most complicated, emotionally taxing, fearful and amazing weeks of my life. One week ago today I wrote a blog about hope and about having faith in our God, but those were just words of a hopeful mother, a mother who wasn’t sure how much longer she would get to hold her child and desperately, secretly begging God at night to keep him. I have read so much bible scripture in the past two weeks it makes my head spin. But one verse has stuck with me and its truth has been revealed to me, through our miracle. The truth inside of me and the truth about our God. Mark 9:14-25 is the story of a father who wants Jesus to heal his son but questions whether He can.

“The father instantly cried out, "I do believe, but help me overcome my unbelief!"

Hours before emergency bowel obstruction surgery

Six nights ago Christian came home from playing with his cousins complaining of a sore tummy. Within hours it escalated to gut wrenching, hair pulling, ear piercing screaming pain. A whole bunch of projectile vomit later, we were on our way to the children’s hospital. Without actually ying the words we all understood what was at stake. We had been told only days before that Christian’s new tumor was completely inoperable. There was nothing more they could do for him except some salvage chemotherapy to ‘extend’ his life. We had entered a phase of bucket list type activities. We were praying for the best but expecting the worst. So as we drove to the hospital we fought our silent fears about what could be causing his pain – knowing very well it could be the mass growing. After one long night in the ER and we were being told his tumor had grown at an inexplicable speed and was now completely obstructing his bowels. Nothing could get past his stomach, no food, drink and most importantly – no chemotherapy. There would be no shrinking this tumor. His cancer was coming after him again and there was nothing we could do about it but pray.

Visit to Calgary Zoo courtesy of Starlight Foundation

Our amazing surgeon, Dr. Mary Brindle was quickly brought to the table to discuss options about relieving his intense pain. We knew the tumor was inoperable but she had a way to bypass it so that food and medication could get from his stomach to where it needed to go. It was not a matter we took lightly as he had already been cut open twice during this valiant battle. He had already endured weeks in the ICU, days intubated, weeks in pain, weeks suffering from withdrawal. Chris and I held tightly to each other and asked the question no parents wants to ever consider; is it time to let him go? Had he fought enough? Would we be doing him any favors by putting him through this surgery knowing full well that the tumor was growing so fast by the time he recovered from surgery it could be already blocking something else. But Chris looked at me and said, “I think we need to give Mary a chance to fix this”. The surgeon was going to be leaving the next morning so surgery had to happen immediately. We decided we could not leave him to suffer in that kind of pain until he passed away so we went ahead with the surgery and four hours later he was again on a operating room table in the surgical suite. He was once again a nighttime customer for the ACH surgeons and once again the life of our little warrior was in the hands of a surgeon.

Time spent at the mountains with nanny

In the hours leading up to the surgery we held tight to each other, we cried a lot and questioned our journey. We begged God for a miracle. As we walked the halls of the oncology ward our tears flowed so freely, our grief had already begun to set it. Are we really ready to lose him and let him go? How could this all be happening so quickly. We didn’t even have a chance to try anything to save him. The nurses felt so horrible for us and cast down their eyes so they wouldn’t have to feel and see our heartache. Knowing glances from other oncology parents who have seen the uncontrollable fear and hurt in each other’s eyes. I could sense the compassion and pity from everybody around me, but all I could feel was despair. As Chris placed Christian in the arms of our surgical nurse and they walked away I will never forget the look in Christians eyes as he put his head on her shoulder and watched me. Like he was so unsure about where he was going and what he was doing. At the same time I could see the resignation in his face and thought surely this was not how he would feel if he were to go to heaven. Surely he would wave at me and skip away excitedly and tell me to hurry along so I didn’t miss him too much. I hugged our surgeon and told her to fight for Christian. She cried tears as she walked into the surgical suite and that was it – we had no more control and I fell into the arms of my friend, Loralie.

Loralie and I spent the next hours praying and talking, ok mostly talking but not really coming up with any answers. We ask the question “why?” and we tried to explain away our fears and angers about being in the situation we were in. I wondered why two young women with young families had to sit around and discuss what it would be like to let your child go and to completely surrender them to God. Loralie spoke of David and Goliath and the epic battle he won over the giant. She spoke of David’s faithfulness to God and how he was willing to battle a giant in the name of God’s plan. She said, it wasn’t the rocks that killed Goliath, it was God, but He needed somebody stand up and to hold the rocks and slingshot for Him. So Loralie said, “I will stand here and hold your rocks for you. I will stand here and say this is not the way it is supposed to be.  So how about we give Him one more chance, three more hours to see what the surgeon does, to see what God does.” She looked at me and wiped away her tears and held me close as we agreed that we would hope and pray for three more hours.

We prayed that God would help us believe, that He would pluck the cancer from Christian’s body and bring full healing to him. That He would reveal himself to us and we would proclaim His name on high when we were finally victorious. At midnight we were told surgery was still going to be a few more hours so our friends and family departed and went home to wait for the news.  About 30 minutes later Dr. Brindle opened the door to our hospital room (minus Christian’s bed which is always an empty and scary feeling). Chris and I both jumped up at her sudden and unexpected entrance. She came over and sat down and said, “I got it all”. I asked her what did you get? She replied, “I was able to get out the whole tumor, all of it”. I immediately feel to my knees and grabbed her legs and cried out in shear disbelief. Surely she was not saying what I thought she was. Did you say you got the whole tumor out? How is that possible? Against the better judgment of the other surgeons working with her that night she went ahead and attempted an unplanned and impromptu tumor resection when she discovered the tumor was not where they thought it was and it was not touching the structures it was meant to be touching. And the Hand of God begins to show itself as the storey is revealed.

Hours post - op

After she explained what she had done inside his abdomen she told us that most, or many, of her colleagues would never had attempted what she had done and she hoped that she had done the right thing for Christian. Only then did we realize the importance of saying yes to the surgery when we did and not wait until the morning when a different surgeon would be on call. She was able to save all of the vital life altering structures, which were supposed to be invaded by the tumor. She was able to repair his intestine so he could eat and receive medication. We hugged her and each other uncontrollably and the emotions were intense and surreal. How is it possible that three hours before I was contemplating what life would be like with out Christian? I was trying to figure out how to tell Evelyn that Christian had gone to be with Jesus. I wondered where I could run and hide forever once he was gone? And now with the swipe of a surgical hand we were once again handed back our sweet Christian. He was given back to us on a recovery room gurney; he was given back to us tumor (and possible cancer) free. How could this be? Well friends, the answer is God is in control of everything and nothing, not even my unbelief, can alter His love for us.

When we look back at the speed and accuracy with which everything happened there is no doubt in my mind that this was how God was going to rid Christian of his cancer. And so many factors had to be perfectly set in place that the only way it could have worked out would have been if God Himself had orchestrated it. And His view from the top is so perfect and unobstructed. We were devastated when Christian’s cancer came back, we were devastated when the tumor was inoperable, we were devastated when it grew so fast it caused a bowel obstruction and we were devastated that he had to be in so much pain again. When we were demoted to complex surgery to easy his pain until he died, we were inconsolable. But all of these small and defined details where the perfect storm that lead to his surgery by a surgeon who was only going to be in the country for a few more hours. A surgeon who was certain it was too risky of an operation that other surgeons would not have attempted it. A surgery which was the answer to our prayers, “Dear God, would you please just take this cancer out of his body – with a swipe of your hand I know you can heal him”.

Day 5

And despite my unbelief, despite my questions and wavering hope, God presented us with a miracle. A miracle the reminded me that God doesn’t care if you don’t have enough faith, or enough belief, or have prayed enough or in the right way, He doesn’t care if you question his plan or get angry at your circumstances: He loves us beyond all comprehension and there is nothing we can do to make him love us less. There is nothing we can do that will make him want to give us a ‘bad gift’. Everything good comes from God and this is really good, having Christian for another semester or the rest of our lives is so good.

Trying to rest

I immediately got on my phone and called Loralie and told her what Dr. Brindle had done and I will never forget the sound of her high pitched laughter and cries all mixed together. We had spent the whole previous evening recalling miracles Jesus had preformed (both in his time and in ours) and wondered if this was going to be for us, for our boys.  And now we squealed together in disbelief. She sent me a text once she got home that said, “we believed…but then when it happens you realized you didn’t REALLY believe. But He did!” And God’s love has never been clearer to me. He cured me of my unbelief.

Today Christian is still in some pain and recovery is always a little slow with abdominal surgery. Lots of tubes coming out of his body, draining this and that. He is talking and moving more. He is starting to want to play with his toys and engage people in conversation. Once again we await the return of our ‘normal’ four old and eagerly plan his fifth birthday party. Five days ago both Chris and I wondered if he would make it to his birthday on September 6^th. But now our hope is renewed and today is a good day and tomorrow when I open my eyes, it will be a great day too! If I have never understood it before, each day is so special and truly not a gift to be wasted. Wasted on anger, greed, resentment, hate or fear. We will try to grasp each day and love hard and earnestly. As we move back into hospital mode I have never been more grateful for the Unit 1 nurses who love Christian with such passion. I could see the pain in their eyes when he was so sick – I feel they were hurting just as we were. Like nobody else they have watched him fight and fight. They have helped us through our darkest nights; they have cleaned up his messes and hugged us when we cried. They have consoled my hurting heart and were not afraid to show me their tears. “Professional distance” doesn’t apply to these nurses who understand what parents need, we need them to love our children just as they do – and they do it so well. Praise God for these angels on earth.

Yucky - but reality

Please continue to pray for Christian’s continued healing and that he will remain in remission. Please continue to pray for Chris and I as we look into alternative therapies for Christian, that God would light the way and open doors for us. Please pray fiercely for the Phaneuf family. That they would be the next to receive their miracle and Jayden would be free from cancer. All the glory in this blog goes to God, as He is the Healer of all illnesses. He is our Father and loves us more than the earth can hold.

Thank God for uncle Nathan who played endlessly with my kids

Today I am thankful for:

1.Loralie Phaneuf and my prayer team

2.Dr. Mary Brindle

3.Belief

4.The opportunity to speak about God’s love and give praise to Him for our gracious gifts

5. Uncle Nathan, Dalton, Peder and Ian who supported us

Street hockey with the cousins

HOPE

Enjoying the beaches of Nova Scotia

Nearly a year and a half ago I wrote a blog titled, “There is hope”. It was only my second blog entry ever and I wanted to assure people that we were not sitting at home crying over Christian’s new cancer diagnosis. Once again I believe there is hope. Not because we have been offered chemotherapy or because we are looking into alternative medicine but because we believe in our Lord and Savior Jesus Christ who is the Healer of every illness. I have hope because God has already paved the way for Christian to be healed by putting His life on the cross and shedding His blood for us.

I have hope because each night I lay my hands on Christian’s abdomen and pray to God that He would heal his illness and banish the cancer from his body. And I know He will do this because He loves Christian so much, because He loves Chris and I so much. On our way home from the hospital today Christian rose his hands and closed his eyes as he sang out, “our God is greater, our God is stronger, God you are higher than, our God is healer, our God..” The faith of a child is so pure and strong that surely God is listening to his words. Christian knows that God is the ultimate healer and the Man responsible for giving him health. I have surrendered everything in my heart and soul; I have surrendered my anger and my fears. I don’t know if the sick feeling in my stomach will ever go away but I have peace knowing that God is on our side and in control. He has orchestrated this day just so, and as such has given Chris and I the tools we need to battle through these tough days. He has given us the ability to learn to love and enjoy each day as it is presented to us.

Don’t get me wrong – each day is a struggle and everyday I wake up and say, “oh yeah, I forgot, ok here we go again…..” Each day I must surrender my life to God and the life of my child to God. But knowing that God wants this responsibility, knowing that God doesn’t want us to fear or worry is what gives me peace. Pastor Doug is forever reminding me that none of us is promised another day on this earth, thus each morning my eyes open are a gift and I give thanks for the day. I give thanks for the opportunity to love my kids, play with them, tickle them and tease them. I am so grateful for amazing our family who supports us and wants Christian to be better. I am grateful for the people who are praying for us because I know it is bringing me peace and calm in my heart when I should be climbing the walls. I promised myself that I will not spend time thinking about what Christian’s funeral would look like or feeling sad that my time with him might be limited. Instead I want to try and focus on making sure each day is amazing and fun for him. I want to be thankful for the time we are given together and that each moment and emotion be heightened. I will not say good bye to him one minute before I have to.

Today Christian had a bone scan that came up clear which means his cancer has not spread – this is a great thing. We were offered some chemotherapy to help with shrinking the existing tumor. We are also looking into some alternative therapy and praying the God will light the way and show us what to do.

I am scared. I am unsure. I am weary. But God calls us to come and call on Him in these times and that is exactly what I am doing. I am asking for help, I am finding people to pray with and calling on him to provide us with strength. Mostly I am calling on Him to heal Christian’s body. To rid his abdomen of cancer and restore him to the way a five year old should be. I am choosing to believe that God will heal Christian, not just that He can, but that He will!

"'If you can'?" said Jesus. "Everything is possible for one who believes." (Mark 9:23 NIV)

Today I am thankful for:

1.Listening to Evelyn talk to her animals, and the stuffed broccoli, whom she promises she won’t eat, her cow might, but she won’t

2.Uncle Nathan who plays unselfishly with my children

3.Calm and peace that can only come from God

He loved the boat!

Hope for Christian Crowell

Dear friends

This is the hardest blog post I have ever written. I will only be able to peck out a few words as I try to explain how our world has been turned upside down. Christian had a scan one week ago today. It has been shown that he has developed a new tumor in his abdomen and his cancer has returned. There is no need to talk about how devastated we are as a family and I know many of you are crying a tear with us. Originally surgery may have been an option but it has been determined that it would be too dangerous and Christian would be in a significant amount of pain following the surgery. The hospital has offered us chemotherapy to help ‘prolong’ his little life. But it has been made very clear to us that he has an incurable form of cancer.

Our hope now stands in Jesus Christ. He is our Father and Healer. Christian’s hope lies in Him, our hope lies in Him. I cannot type anymore as the words to express my heartbreak are non existent. I believe that, be it God’s will, Christian can receive a miracle. Gods will be done but God cannot deny the words and prayers of his people. So would you please raise your voice and say a prayer out loud for Christian, a prayer that would bring a miracle to our family and save our little boy. Once Christian is healed there will be no doubt about God’s grace and love. We strongly believe that God can do anything - God can give us a miracle and a cure when no one else can. When medicine is done, God begins. 

Many thanks to the people who have already lifted Christian up in prayer. Please join our online prayer group (Freda Steeves – God bless you). Search Facebook for “Hope for Christian Crowell”

Today I am thankful for:

1.     Hope

2.     Faith

3.     Love

SCANXIETY

YUM!

Well here I am again. The night before a scan and wondering what tomorrow will bring? Not worrying but wondering. OK who am I kidding I have some serious pre-scan anxiety, “scanxiety” it has been dubbed by oncology parents. It can’t be helped. I sit here and look at him and wonder. Everyday he gets a little sweeter, a little hairier, a little more like the little boy I imagined he would always be.

I have tried to imagine what it would be like to receive the news that the scan was not clear. I have tried to imagine what it would feel like in my heart and in my soul. Would I be able to walk? Breath? Think? I had a very, very small taste of this when our good friends received the news that Jayden has developed a new ‘tumor’ after being in remission for a good chunk of time. Ever since I spoke with Loralie on the phone and she shared the heart wrenching news with me I have had a sick feeling in the bottom of my stomach. A constant ached in my heart and tear not very far behind. I try to stay busy as much as I can during the day so I don’t have to think about the results could be. But when I lay in bed at night, especially with his skinny little legs draped across my chest I can’t seem to stop my mind from wandering. When it wanders I try to pray. I pray for patience because I seem to have used all of mine up. I pray that I would have peace in my heart going into the hospital tomorrow so that Christian can feel relaxed. I pray that God continues to shield Christian from any horrible sickness or side effects from the massive amounts of chemotherapy he had.

Enjoying the beaches of Nova Scotia

Yet sitting here in my bed tonight I just feel sick. Can I explain to another person, another mother what it feels like to lay in bed at night and wonder if I will have to say goodbye to my child? I wonder what death would look like for a child suffering from cancer. Do they feel peace? Will it be painful? Can they feel the presence of God and know that everything is taken care of? I am sorry for the abysmal thoughts but these are things that occupy my mind while I can’t sleep.

On the other end of the line I spent a few minutes with Pastor Doug the other night and in the midst of the storm they are peaceful, smiling, and hopeful. Doug reminds me that God has not guaranteed any of us another day. And while I worry about Christian and the results of his scan I am also thankful. While I was brushing my teeth this morning I said, “Thank you Jesus for this day, for waking up and giving me a chance to be a good human being, mother, daughter, sister and wife.” At the end of the day I don’t know if I succeeded but I pray I will get another chance again tomorrow. And I pray that Christian will get thousands of more chances to be a big brother to his siblings and a son to Chris and I, a friend to Jayden and a nephew to my brothers and sisters. When I pray at night I try to be as honest as possible with God as I know that He knows the real truth. And the truth is that I am scared. I am more scared today that have ever been before. I am terrified of picking up the phone and hearing the results of the test. I am terrified to hear those words. The words that no oncology parent wants to hear.

So tomorrow we need prayer. I need God in that room with Christian; I need Him lying on the scanner with Christian holding him in His arms. We need God in that operating room with Jayden while they take a sample of his tumor. We need the surgery to be perfect and the tumor to be nothing. We need miracles and healing tomorrow. Please pray for our precious boys.

Christian enjoying the ride with Rod - life is good

Today I am thankful for:

1.A beautiful evening breeze after a hot day

2.The song the ice cream truck plays while your sitting on the deck

3.Days spent at the mountains throwing rocks in the water

TADA!!!!

HEARTACHE AND HOPE

Enjoying our time at the cottage

I write this blog from 3500 feet above the ground as we chase the sun back to the west. I, usually quite stoic and emotionally ‘barren’ (so I have been told!), spent most of the day crying and tearing up as we spent the day saying good bye to our Nova Scotia family. Six weeks ago we arrived in Nova Scotia, and I can honestly say I don’t know specifically what it was that our family needed – but we got it. We spent countless hours in the park, at the beach, with family and just doing plain nothing. From the minute we stepped off the plane Christian morphed into a new little man. A boy who all of a saddened seemed to have no fears, no apprehensions, no worries. Here he new he was well loved, he knew that he could trust and I knew that I could trust. We have so much to be thankful for and so many people to be thanked for making our trip so special. Special people who raised money to help pay for our plane tickets, special family members who took my kids so Chris and I could do the things that we loved and needed to do to heal and feel normal again. Celebration parties so we could meet all the people who have been praying for Christian and our family. It was such a blessing to see these peoples faces and feel their genuine love and concern for our family. I don’t any other words to say except thank you.

This last paragraph was written almost four days ago. I started this blog on the plane ride home. Tears were fresh in my eyes from saying good bye to Rod and Marilyn at the airport. I was of course crazy to assume I would get more than six words typed before somebody had to pee or needed their earphones plugged in. 

And now heartache.

I get a phone call the morning after we arrive home, my good friend Loralie. Her voice was such that I had to keep talking after she said hello because I didn’t want to hear what she had to say – I already knew. I already knew because the fear is so deeply ingrained into our mother brains about ‘what could be’. The Phaneuf family received the horrible news that they had found another ‘tumor’ in Jayden’s leg and he is no longer in remission. Because our two boys are in the same position (little or no treatment options for relapse) Loralie doesn’t need to say the obvious. I had to hold down my stomach to keep from throwing up – because I knew the terror she was feeling. It was like I was being told that Christian had relapsed. Somebody could have kicked me in the head and I don’t think I would have felt a thing. I am having such a hard time writing this because I don’t even know the words I want to say. I keep typing and deleting….typing and deleting.

Evelyn and Christian with Ms. Evelyn Grew who
prayer for christian everyday

Every parent with a child with cancer plays the “what if” game, and now our good friends are living my worst nightmare. I am watching this nightmare come to fruition and I don’t want to know the ending. I want to go to sleep after I write this blog and wake up in the morning and have it be one of those, “Boy am I glad that was all just a bad dream”. I have such a heavy, heavy, heart – I am not sure I have had this feeling before and I keep trying to shove it down. And when I lay down at night all I do is think of Jayden and his family and all they have been through. I think of the feeling in the pit of my stomach and wonder how bad Loralie’s is? I sent her a text last night through my tears and sobs and she was the one who was comforting me – telling me that there was hope. All along our journey this amazing family has been a constant source of encouragement, knowledge, love, and most importantly understanding. Until you have watched your bald child throw up from chemotherapy and cry in pain you have no idea the thoughts and emotions that go through our heads. But Doug and Loralie always did. It was like God put them on earth so that they could help us through our most difficult times. So that they could teach us how to be better Christians, how to trust in God’s plan and have faith in His promises to us. Promises of good gifts, hope for a future. So many nights I cried and Loralie comforted me with God’s love and I want to return the favor. But I don’t have scripture for her, and I don’t have God’s words pouring into my ears with hopeful messages for her. But I can ask you to prayer for Jayden, pray that the ‘tumor’ they found in his leg will be benign. That he will not need any additional treatment and that God has already healed his body. I can talk about the Phaneuf family and how amazing they are and how they have saved our families integrity and future. How Pastor Doug and his guitar has brought so much joy to Christian with his music.

Without going into any details (which I would most likely get wrong anyways) this amazing family has so much reason for hope. Reasons that come from the heart of God and words spoken for them giving them hope. They are such an amazing example of how trust and faith in God can overcome even the most horrendous of circumstances, and this is pretty horrible. People often say to me, ‘You should make this blog a book’. But if people could hear this family’s story – they would be so inspired by their faithfulness, their raw emotions, and their trust in God.

Today I ask you to put forth every prayer you can for Jayden and his healing. That Doug and Loralie (and Megan and Nicky) would feel peace and understanding in their hearts. That God would continue to guide and move through them. Please say a prayer right now for Jayden, God is waiting to talk to you.

Nanny trying to show Evelyn how to bowl

Today I am thankful for:

1.Pastor Doug and Loralie, Megan, Nicky and Jayden

2. Hope

3. Olympics on TV (Evelyn asking me while watching Synchronized swimming if I wanted to do that. When I asked if she wanted to she said, “no – I would get water in my eyes”)