Stephen's Story - A Family Journey

Jesus answered and said, "Have faith in God. Truly I say to you, whoever says to this mountain, ‘Be taken up and cast into the sea,’ and does not doubt in his heart, but believes that what he says is going to happen, it will be granted him. For this reason I say to you, all things for which you pray and ask, believe that you have received them, and they will be granted to you."

Mark 11: 22-24

For those of you who don’t know us that well, we moved to Chatham from Belleville in December of 2007. I was part of the team that launched the first UCB Canada station which went on the air in Belleville in October 2003. My wife, Rosanne, and I have three children, a daughter, Emily, and two sons, James and Stephen. We’ve also had a few foster kids along the way. Our household is a busy and often loud one, just like many of yours and a few years ago, our life got even crazier. In July of 2009, our youngest – Stephen – was diagnosed with acute lymphoblastic leukemia (A.L.L.). Disease is not a respecter of persons and this hit us completely broadside. The whole focus of our life changed in one afternoon. I can’t say enough about the level of care that he received at the Children’s Hospital in London. He was diagnosed on a Tuesday, admitted the next day and by that Friday, they had his three-year chemotherapy protocol all mapped out – a very thick binder filled with words we had never heard of - and he received his first treatment on that Friday. Within five weeks, after some time in Ronald McDonald House, his cancer was in remission and he was allowed to come home. You’ll never hear us complain about the health care system in this country. Despite what Liz Cheney argued recently on Larry King Live, children in Canada aren’t dying of cancer because of delays in care due to socialized medicine.

As far as leukemia goes, Stephen had the good kind, if I can put it that way. There are different types and different levels of leukemia and Stephen had what they call “standard-average” A.L.L. There are three broad levels: low, standard and high risk.  His daily chemo treatments would last three years. There were no major complications in his first round of treatment and after the first six months of heavy treatment (“induction”), he settled into what they call “maintenance”. This consisted of daily methotrexate pills to take at home and a monthly trip to London for an IV of a very potent chemo drug called vincristine. He also had to have a Lumbar Puncture every three months which involved an injection of methotrexate directly into the spine. Every treatment in London was followed by a tough week of nausea, weakness, etc. The medical staff said to us back then, “We’re going to take your boy away from you for a while but don’t worry, we’ll give him back.” It didn’t take us long to realize our own powerlessness. Like you, we help our kids and they think we’re miracle workers or something, but there was nothing we could do this time except give him to the oncology department in London – and pray.

A few days after Stephen was diagnosed our church held a special prayer meeting for all the sick people in the congregation. I was still feeling a bit numb and wasn’t in the mood to go but felt I had to. Rosanne was staying full time at the hospital with Stephen. Others would be praying for us and the least I could do was pray for them. So I went and I remember not really knowing what to pray so I said a blanket prayer for healing and named each person on the list provided, including Stephen. And there was something else I prayed that night. I confessed that regardless of how things turned out, God is still good. In a moment of spiritual clarity, I knew I had to pray that and so I did. It struck me at the time how good it is to pray even when you don’t feel like it. Regardless of our circumstances, God is a good God and there is much relief in trusting Him.

Over the first few months the church helped us out with meals and babysitting and we would find things like gift cards and gas cards in our church mail box, things we will always be grateful for because they helped lighten the burden. Here is Rosanne’s account of the first few days and weeks in the hospital with Stephen:

“During those first few days a woman came knocking on Stephen’s hospital room door. She introduced herself to me mentioning a mutual acquaintance from Belleville. Lisa Elliott is a Christian whose 19 year old son, Ben, was battling leukemia and they were trying to get him into remission. (Google search her book The Ben Ripple). We were still a bit shell-shocked and on a huge learning curve and God “just happened” to place her in my path. She encouraged me as a mom who had gone before and we would correspond afterward as one “A.L.L. Mom” to another. Those were dark days for her and us on different levels. It wasn't easy sharing with our son about those who had passed away from the same disease he had and talking about why God allowed these things to happen. However, God is always with us, knowing what we need and when. He has shown that over and over to us. I was with Stephen 24/7 for those first 30 days. At one point, everyone was encouraging me to go home for a break but I didn’t want to. Emily and James were away with family in the Ottawa area for the first two weeks and I was nervous about going home to an empty house while Al stayed with Stephen in London, but eventually I went. The flood of emotion that came over me when I got home was overwhelming but I needed to reconnect with home, with things non-medical. I needed to pick up some items at the store as well and I recall so vividly walking in the parking lot and seeing people come out with what seemed like not a care in the world and inside I felt very alone. My life had a new normal. I went in and out of the store like a zombie. However, as I walked out I knew that God was with me because He opened my eyes to how many times I had been the one with no major concerns and walked right past someone whose world was falling apart. Those firsts are difficult – like coming home for the first time, shopping for the first time, walking through the doors of our church for the first time in a long while. Whether it is with a child that is dealing with a potentially terminal illness or your world has been rocked by something else, God is constant. He is there.” [End of Rosanne's account].

Things continued relatively smoothly until May of 2012 when Stephen, with little to no immunity, picked up a bad ear infection. He began to get more lethargic. The doctors couldn’t figure out what was going on. In August of 2012, he was hospitalized twice in London and to make a long story short, we were told that he would have to have a kidney biopsy and some other tests to properly diagnose him.  It was finally determined that his kidneys had been damaged due to a latent virus that 90% of us carry but usually stays dormant. This virus – called Polyoma BK - came out of dormancy most likely due to the chemotherapy drugs which decreased his immunity. A few weeks after this, on September 12 of 2012, Stephen had his last hospital chemo treatment. His home chemo would last for another three days. Stephen wasn’t in very high spirits that day but was glad he was at the end of his three years of treatment. Then the medical staff asked Stephen to go get ready for his treatment while they talked to us. Things didn’t feel right. Rosanne was looking at Stephen’s blood numbers from the past few treatments and they were erratic. We had learned enough in three years to know when blood count numbers aren’t good and so we had to ask the question why. The nurse case managers looked somber. I took Stephen out of the room and when we were gone, they told Rosanne they were pretty sure his leukemia was back. Again, we were devastated. Later, I asked them what happens if it’s back and they said, “We start all over but this time the treatment will be more aggressive.” We asked if his kidney trouble could be messing up the blood counts and they said no, the two were not related. It was on this day that we were told two things: that he needed a kidney biopsy and that his leukemia had likely returned. They were going to schedule a bone marrow test for the following week. They also said, “Whatever you do, don’t go looking all this up on the internet!” So, when we got home, I looked it all up on the internet. I wished I hadn’t. It said with recurrences this soon, survival rates drop to 10%.

This was easily the worst day of our lives. We had a camping trip planned for that weekend and part of it was an end-of-chemo celebration with friends as well as a birthday celebration for Emily. When we mentioned the trip to these two senior nurses, they told us to go anyway and said, “Take a bottle of wine with you”. They didn’t come right out and say it, but they might as well have. “Go camping. You don’t know how many more times like this you'll have together as a family.” We just wanted to die. Anyway, we decided not to mention any of this to Stephen or anyone else and to just go camping. It would’ve been worse not to go. On the Saturday afternoon that weekend our kids were off with their friends and Rosanne and I were sitting outside the camper. I was reading a book…You Can Be Healed by Bob Gass…and I was quite taken by it. I shared some of the insights with Rosanne and I said to her, “We need to pray right now.” So we did. We prayed for Stephen’s healing, asking in faith, according to God’s Word and after we prayed, we both had what the Bible calls "the peace that surpasses all understanding" (Phil. 4:7). We were not just happy and satisfied, we were elated. At the time, I wasn’t sure if we were on some sort of a cathartic emotional high but we both felt pretty good. We were not in control but had taken God at His word more seriously than we ever had in the past. We were in a very different place spiritually than we had ever been before and we knew it was the best place to be. A burden had been lifted. We felt joy. It was good that we went camping.

We had to ask ourselves, though, what we truly believed. Do we really believe that there is a God in heaven who will heal people? Do we really believe that He is in control of our circumstances? Do we really believe what Jesus said in the passage that I began this post with? Do we really believe any of it at all?

I've often wondered about Christian healing. Jesus had a 100% track record. He never missed, never had to tell somebody, "Sorry, I guess it's not God's will for you to be healed." There are instances in the Bible where it says that He couldn't do too many works because of the unbelief of the people, but all who asked to be healed were healed. The reality of today, however, is that many ask in faith but not everyone gets healed. I don't understand this. I guess the answer for some is, "My grace is sufficient for you". Each of us gets dealt with by God in different ways at different times. Sometimes we get delivered from trials, other times He stays with us through the trials. Regardless, God’s promises are still true. (Here are some verses for your reference: Exodus 15:26, 2 Chronicles 7:14, Psalm 34:19, Isaiah 57:19, Hosea 6:1, Mark 11:22-25 and James 5:15.)

When we prayed the way we did, it became apparent that God was asking the two of us specifically, "Do you believe your circumstances as you see them or do you believe in Me, the author of all circumstances?" It's easy to talk about this now but it was very difficult at the time. On the one hand, we had the medical opinion of some very well educated and highly trained people. On the other, we had the God we could not see, the One who calls us to trust in Him regardless of what we see and this is gut-wrenching because you have to give up any notion of control and common sense. You have to go beyond that. As I said, we don't have control over things anyway, but our pride says we do and we act like we do because we believe that we do. But we don’t. It's a very powerful myth.

Choosing to trust God over against our circumstances is a scary thing because we don’t know what’s going to happen. Hebrews 10:31 says, “It’s a fearful thing to fall into the hands of the Lord” because once we fall into God's hands, we have to let go of everything else and hope and believe He’s going to be there because if He doesn't catch us, we're doomed. And there’s a great fear of looking like a fool. However, He has promised to catch us and He calls us to trust Him. The promises are there and are just as relevant today as they were in the time of Jesus and before that. The issue isn't that, the issue is our trust in His promises. Our own hearts will fail but not His promises. I think our problem is we have too small a view of God and often we just give up too easily. We just accept the bad things that come our way. We capitulate to our circumstances and pay lip service to God instead of surrendering to God and asking Him to change our circumstances.

For the rest of that weekend, we both struggled to keep our eyes on God and not on our circumstances. When we got home from the camping trip that Monday, we asked our pastor, Gord Reynolds, to bring some elders to our house to pray over Stephen. When they arrived, I met them outside and told them that we were told the leukemia was probably back but we had not told Stephen yet. We decided to wait with telling him after his next scheduled blood test which would be the next day. Pastor Gord and the elders, Greg Baker (no relation) and Laird VanderEnde, came in prayed over him and anointed him with oil. They were there for about 15 minutes and then they left. The next day Stephen had his blood tested here in Chatham. They sent the results to London and told us somebody from the hospital would call us with the results. Just before lunch, I phoned home to see if anybody had called and Rosanne said they hadn’t.

I left work to go home for lunch and on the way I got thinking about the past week and again, I felt that inner joy again. I remember thinking, “Why do I feel this way? Joy, of all things. I may be going home to the worst news of my life and I feel joyful.” It seemed morbidly out of place. At home, Rosanne also had this inner joy and peace before receiving the results. When I walked in the door, Rosanne kind of floated to the front door with a big grin on her face and said, “The hospital just called and his blood counts are all normal.” They told her that the bone marrow test would not be necessary and that they would see us in five weeks for our regular follow-up appointment. Rosanne told me later that when she hung up the phone all she could do was give God thanks. Just like that, we were now having the best day of our lives.

Doubts are never that far away, though. We wondered if he was actually healed or if those nurses just got it wrong. Was he really well the whole time? But then I remembered that these nurses aren’t rookies. They didn’t just graduate from university the previous year. The one nurse practitioner has worked in oncology for 25 years and performs the exams when the doctor is away. They’ve got years of experience and have seen hundreds of these tests. They know what’s good and what isn’t. Also, I felt something - twice - on the camping weekend and again on the way home from work that day, that joy that was seemingly misplaced. I believe and yet, I still don’t fully understand.

You know how they say you can lose years off your life because of the stressful things you go through? Well, I’ve often joked that someday, when I’m on my death bed, I’ll be thinking, “You know, if it wasn’t for that youngest one, this wouldn't be happening until a few years from now.” Seriously, though, I believe God will restore the lost years of our lives in due time. There’s a great promise in Joel 2:25 that says, “The Lord will restore the years the locust has eaten”, and I believe that.

In closing, as of August 2015, there was no evidence of his cancer. Stephen has passed the five-year remission mark. The oncologist is very happy with his progress. They will be tracking him the rest of his life at the Children’s Hospital because he had a childhood cancer. His nephrologist (kidney doctor) was equally happy. The doctor couldn’t believe that Stephen was dealing with Polyoma BK because, until now, it was only a problem with kidney transplant patients. Stephen had to take what they call immunoglobulin intravenous treatments, but they did nothing. The doctor then opted to not treat it and see what happens and within a few months, the virus had all but gone. The occurrence of Polyoma BK in non-transplant patients was new and hopefully this will enable science to help other children who get the same thing. At about the same time, I asked the oncology nurse case manager about the time she told us the leukemia had returned. I asked her why the blood numbers were wonky and she said it must have been his kidney problem affecting them, the very thing she said was definitely not the problem a few months earlier.

When we go through negative experiences many say, “I can hardly wait to put this behind me”, or, “I’m never going back there”. We don’t ever want to go through that experience again either – in the physical sense. Even emotionally, when I think or talk about it stirs up many emotions that can be very overwhelming. However, when it comes to the spiritual aspect, we want to re-visit that over and over. God touched us deeply and met us there. There is a sweetness amid the trial. I said earlier that I didn’t understand why sometimes there is healing in people and other times there isn’t. I was hoping to find out but today, I’m none the wiser. That said, I have learned to trust in God more and when I look at my own independent streak, perhaps that is the larger miracle.