Monday, November 17, 2014

A Rock and a Hard Place

(This is the second of multiple posts that deal with my son's diagnosis with cancer and the days and weeks that followed. We praise God for His faithfulness to Jesse, who is now healthy, strong, and causing all the trouble you would expect of a normal 8-year-old boy.)

When Jesse's procedure was over, and we were cleared to leave the surgery center, we drove home. I don't remember what my wife and I said to each other. The first hurdle for me was knowing that I had to walk into my house and tell my parents that their beloved first grandchild, my Father's namesake, had cancer. They already knew it wasn't good -they had expected a text from me after the surgery. What I sent was something like "The news is mixed, will talk more at home." What a terrible thing to send to them! I didn't know what else to write. I was still in shock, myself, and I was not -under any circumstances- going to tell them by text message that it was cancer. When we finally arrived, we got Jesse in bed and made sure he was settled, comfortable, and resting. He was still sleeping off the anesthesia. In the living room, I told my parents what they had already suspected. "It's cancer," I said. Nell remembered more of what the doctor reported to us, so we told them what we knew up to that moment.

The problem was, we really didn't know very much at all. I can share the entirety of it with you in about three sentences. Jesse had cancer. The tumor seemed contained and was removed. He would need more treatment, including chemotherapy. We didn't know how much treatment he needed, or where he would receive it. In fact, we didn't even know what we were supposed to do next, other than to wait for the urologist to call back. It dawned on me that I might have to make decisions in the next days or weeks that could quite literally be life-or-death decisions for Jesse. It was all so heavy. I spoke with my sister, who is a doctor in Houston. Her recommendations were helpful: We could go to Texas Children's Hospital, we could stay at her place, etc. She would get back to us. A family friend called and agreed with my sister, but told us that St.Jude might not accept us later if we started treatment somewhere else. I remember thinking, "Well, how are we ever going to make these kinds of decisions?" We began praying God would lead us and show us what to do. My sister, Jen, called back with a name. She said she would really like for us to come to Texas... but if we got a doctor named Pappo, at St.Jude, he was the absolute best. Again, I prayed for help, because I couldn't see how in the world we could get there from where we were.

I can't begin to explain how overwhelmed we were. By Saturday, most of our church family knew what was going on, and the love was starting to pour in. We appreciated all the support. To be honest though, it was hard to control our emotions. Every time we would get leveled out, someone would do something really touching and sweet, or would want to know what they could do to help. It made me very thankful for our church family, but the emotional highs and lows were tough to handle. There is a level of shock and dismay that can make even the kindness of others seem taxing. It should not be so, but we found it to be true.

We didn't really know what to say to anyone... Everyone was loving and showing concern for all of us. Many were asking thoughtful questions that we couldn't yet answer. We just had to wait to find out what was going to happen. It wouldn't be the last time we had to wait anxiously! I remembered a Caedmon's Call lyric: "...just like the long Saturday, between Your death and the rising day, when no one wrote a word, and wondered 'is this the end?'" We waited, and waited. We tried hard to trust the Lord with it all. I had never known what an effort trusting God could be. I began to wrestle with God at the deepest level. I used scripture to confront my own doubts: "Will not the Judge of the earth do what is right?" It seemed my honest answer wasn't "YES!," but rather, "I guess we'll see." The salt in the wound was feeling like I shouldn't be feeling those things. Somehow I had expected that I would automatically trust God in any difficult circumstance. I was learning that trusting God is never automatic.

We thought the situation looked pretty dark. We had been given some preliminary news that treatment for Rhabdomyosarcoma was usually successful, but our fears were stacking up. You can probably follow our line of reasoning up to that point: We had been assured that children didn't get testicular cancer, so for this to be cancer must be very bad.  We knew that it was a pretty rare form of cancer, so that too must be bad. No one we knew had ever even heard of Rhabdomyosarcoma, and the urologist said it was the only case he'd ever seen. That's bad! We couldn't imagine seeing Jesse deal with the effects of chemotherapy, but were told it would be absolutely necessary. We thought we were going to have to choose a doctor or hospital for Jesse's treatment, and we were already getting conflicting reports of where we should go. With the family gathered in the living room, we talked about the options and what they might mean.

Finally, I brought myself to say aloud, "No matter what happens, we just want God to be glorified." It was certainly the "right thing" to say. But it wasn't uttered out of a deep, calm assurance that whatever God was doing was alright with me. On the contrary, I was miserable and mistrusting of God. I had always imagined that my faith would be the rock-bottom I would land on when things got hard. In the midst of the trial, it wasn't as simple as that. I knew better than to buy into the "easy-believe-isms" that are so popular in contemporary, casual Christianity.  Of course I was praying God would heal Jesse... Of course I had faith that He could do so, completely, instantaneously, miraculously... But I also had the terrifying knowledge that Jesse was His -not mine- to do with as He pleased. I knew that nothing I could say or do would change what God had decided would glorify Him most in our situation. I knew that it was very possible that God would take Jesse home. I just didn't want us to be that family. For the first time in my Christian life I was angry with God. I didn't think we deserved better from Him, or anything like that. I knew all of this would ultimately be for our good. But instead of resting in that truth, I resented God for it. That was a very scary place to be, emotionally. So I could still bring myself to say the right things, but on the inside, I wondered, "Is this what my relationship with God is going to be like, for the rest of my life?" Would it always be gritting the teeth and saying the right things and grudgingly giving Him praise? I desperately hoped it wouldn't be so, but I couldn't look past the circumstances.

Jesse healed up, post-surgery, and began to go back to the routine things a 7-year-old does. He looked perfectly healthy, which made the situation all the more surreal. Looking at him, you would never have known that a deadly disease was present there, in his body, just waiting for an opportunity to manifest itself somewhere else, possibly taking his life. I thought about how blessed we were to live in a time when something can be done, instead of doing nothing and just hoping the cancer wouldn't come back. I knew the treatment would probably be hard on him, but at least it gave us a chance to completely rid him of the disease. That was really the first ray of light that made it through to my overcast heart: I was thankful for chemotherapy. I was thankful there was the possibility of a cancer-free Jesse.

When the Urologist called back, he said that he was referring us to St.Jude, and that there was an affiliate clinic in Baton Rouge. He said we would need to meet with the doctor that Thursday, and that we should prepare to be admitted to the hospital. He said the doctor we were being referred to was really good, very highly recommended and well-known in the field - all of those things. His name was Dr. Deyo. Our Urologist said that he was both an M.D. and a Ph.D. pediatric oncologist. I knew very well that all those letters were a big deal. But apparently, we weren't going to Memphis, and his name wasn't Dr. Pappo. I wondered what my sister would think of this new development. But the urologist hadn't given me any time or room for options. "You have an appointment Thursday," and "Pack a bag to stay a few days," was all the info we got from him. We got our things together and headed to Baton Rouge.

Early Thursday morning, I walked into a St. Jude clinic for the first time. It was one of those pivotal moments in life - when time sort of slows down and you notice everything very clearly; and then you remember it with more detail than your other memories ever seem to have. The Baton Rouge affiliate clinic is (currently) housed in one of the buildings connected to Our Lady of the Lake Hospital. The building is a bit old, and has a very clean and plain sort of feel to it. It is very...beige. The clinic, on the other hand, was clearly designed with children in mind. It was colorful, cheerful, and decorated from floor to ceiling with St. Patrick's Day decorations. It was quiet, and we were alone. No one else was in the waiting room, and the receptionist wasn't yet at her desk. I was looking at all the decorations when I first saw the photos. There were so many of them - hundreds of pictures of bald-headed cancer patients. Standing there with Jesse's hand in mine, looking at those pictures, I finally came face-to-face with the magnitude of the mountain in front of us. I looked down at my son, and then back into the eyes of a bald-headed girl who's name I'll never know. She and her hundreds of fellow cancer-patient friends silently welcomed us to St.Jude. Every child was smiling -beaming, even- but I was terrified. I knew there was immeasurable hardship behind those smiles.

The receptionist eventually came to her desk and greeted us. We were moved to an exam room, and Jesse sat in my lap. Once again, we waited. Jesse told me he was scared. I comforted him, though I was certain that, with my adult level of understanding and the reality check I'd just received in the waiting room, I was a great deal more nervous and afraid than he was. We prayed together and tried to keep occupied with the decorations in the room. Finally, there was a knock at the door. Dr. Deyo came in an introduced himself. He smiled, and immediately went to work making friends with Jesse. That said more to the daddy in me than all his degrees. He opened a file folder and started to talk about Jesse's case. After all the questions and all the waiting... God started answering.

It sounds over-dramatic, but it was the absolute truth. And I can't think of any other way to explain those moments. Dr. Deyo was answering questions about cancer and treatments. But the answers he was giving were speaking to me on a whole different level. God was answering questions about His faithfulness and His goodness. And when He answered, boy, did He answer. The very first thing Dr. Deyo explained was the way the affiliate clinic worked. "So," he said, "you also have a whole staff in Memphis that is reviewing all the decisions we make down here, just to be sure we're all in agreement." "Jesse's doctor in Memphis is a fine doctor... head of the tumor board...  Dr. Albert Pappo..." ...  Tears welled up in my eyes. It was a huge God moment, and it was only getting started. Every single thing we were worried about was met with cause to be very thankful... We were worried about a child Jesse's age having cancer in the scrotum, since it was virtually unheard of, and fearful that such a case must be very bad news, indeed. But Jesse didn't have testicular cancer- he had Rhabdomyosarcoma. And for "Rhabdo," a para-urniary-tract presentation is very favorable, because it is relatively easy to spot remove the tumor. It wasn't bad... it wasn't even mediocre... it was in the most favorable location! Jesse also just happened to be in the most favorable age-range for being diagnosed with Rhabdo. We had been concerned because of the rarity of the disease, but Dr. Deyo explained that the standard treatment for Rhabdo was 85-90% successful. We were afraid of the effects of chemotherapy, but Dr. Deyo explained that Jesse's treatment would likely be smaller doses, using drugs that had a trusted, successful history and minimal toxicity. There was even good news we hadn't expected. Rhabdo has several sub-types which differ in treatment and prognosis. As cancers go, Rhabdomyosarcoma is usually very treatable, but one type in particular is the more favorable. Jesse's cancer was of the more favorable sub-type. Answer after answer, faithfulness upon faithfulness. It was as though God was saying, "I told you I was good... I told you I was good... I told you."

We were so glad to hear all of the good news. We learned that Jesse was being admitted so that they could run more tests and scans to confirm the stage of Jesse's cancer. Dr. Deyo also explained that with Jesse's type of cancer, we could likely complete all of the treatment at the affiliate clinic in Baton Rouge, without the need to travel to Memphis. That reminded me that I had worried a lot about which hospital and which doctor to choose- and that we hadn't even had to make that decision. Moreover, we didn't even have to pick between Memphis, Houston, or anywhere else- we were going to be able to stay right here at home. God had been so faithful! He had met every question mark with an exclamation point. As we finished up the meeting, I was feeling so relieved about Jesse's prognosis. And for a brief, but much needed time, I rested- really rested- in God's goodness and faithfulness.

In Matthew 15:18, Jesus teaches the principle that the things we say come from the heart. In other words, when we react outwardly, we display what is in our hearts. I entitled this entry "A Rock and a Hard Place..." because, through much of our ordeal with cancer, I felt as though I was being squeezed. God was my Rock, and Jesse's cancer was the hard place. Too often, I did not like the things that came out of me. I was frustrated with my own lack of trust for God. What was showing up on the outside was just a reflection of the condition of my heart on the inside. The Puritan writer, Jeremiah Burroughs, explained the same principle with the illustration of full and empty vessels. When a vessel is struck, if it is full, it makes a controlled and quiet sound. If it is empty, it makes a harsher sound, and sometimes is shattered. My heart wasn't empty, but it wasn't as full as I imagined it to be. When I talked to God, I know I was harsh and noisy, because I wasn't being filled by Him and making the most of the opportunity to glorify Him. In the days since, I've come to see that even that realization was made possible by a Gracious Father who loved me enough to show me what I was lacking. And that isn't the last thing He showed me through these difficult days. If you're interested, stay tuned... there's more to come about the things God taught me about His faithfulness through a time of trouble and hardship.