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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