February 2, 2011 - Surgery

While I was still feeling very hopeful this morning, I was also filled with fear. I knew it was not going to be easy to leave my child with complete strangers and wait around for five hours while they cut his head open. We got to the hospital early as we had to check him in for surgery and get him into another MRI.

We had been though all of this the day before so it was beginning to feel routine now. Check in. Wait. Go into the MRI prep room. Wait. Go through the medical history and "what to expect". Wait. Prep for the I.V. Scream. Wrestle. Scream. Insert I.V. Scream. Suck on pacifier. Wrestle. Scream. Find out the I.V. didn't go in right. Remove I.V. Scream. Wrestle. Play with toy. Settle down. Turn off lights. Shine light through arm to look for veins. Scream. Wrestle. Prep for second I.V. Scream. Wrestle. Scream. Start I.V. Scream. Oooooh, dinosaurs on the adhesive wrap. Settle down. Wait. Wait. Wait. Go into MRI. Start sedation. Put in earplugs. Loud bangs. Even louder hums. Wait...

When we finally got to the recovery room the race was on. He is not allowed to eat before the MRI, so they would normally give him something to eat as soon as he is awake enough. But the day before they didn't feed him because they thought he might be going into surgery. So we knew what to expect when the irritable after effects of the sedative mixed with the even more irritable effects of hunger. We were hoping they could get him into surgery before he woke up so we could avoid that nightmare.

The recovery room nurses were calling to find out when he would be brought up. They told us the day before that it would be around 10:15-10:30. But Dr. Kestle's first surgery went long, and they had to clean and prep the operating room. Now we were told it would be at 11:30. We were bracing ourselves for the inevitable. Suddenly Dr. Kestle showed up to save the day. He was ready, as was the room. As soon as the anesthesiologist met with us it was go time. Ike was still sedated.

A few minutes later the anesthesiologist showed up. Ike was starting to stir. Dr. Clark was the most unlike anesthesiologist I have ever met. These guys aren't usually known for their personalities. Let's face it, their best work is done when their patients are asleep. But he was very personable. He was also very detailed. I have had my share of surgeries, and sat through both of Heidi's c-sections. Usually the anesthesiologist says he is going to put a mask on you, tell you to count backwards from 100 (good luck getting to 95), and he will see you on the flip side. Dr. Clark spent over 15 minutes explaining everything he had to do and why...second I.V., arterial line, central line, breathing tube. It seemed like the list would never end. But he was thorough, which I liked, and seemed very compassionate and concerned, which I liked even more.

Before Ike got too irritable, we were off. We went through so many back hallways and elevators I didn't know which way was up, and thought we were halfway to Idaho. He dropped us off in a waiting room just long enough to sit down and breathe, then brought us the rest of the way to Idaho. He opened one last door and told us it was time to say goodbye. I didn't want to let go, but I was comforted that I wasn't dropping him off in some anonymous weigh station. I was leaving him in the arms of his anesthesiologist.

Then we began the longest five hours of my life. Luckily I was able to plan some distractions. My best friend Tony called yesterday to tell me he was going to take the day off of work and come hang out at the hospital with us. I didn't know at the time how much of a help it would be, but it turned out to be the best thing anyone could have done for me on a day like today. I also had to go home, check on Pyper, and bring Holly up to the hospital. That takes a big chunk out of a five hour surgery.

The surgeon told us that a nurse would call every hour to an hour and a half to give us updates. They called an hour after we left him to let us know that the surgery started. Then they called to let us know they had sent a sample of tumor to pathology for a preliminary diagnosis. Next they called to say they were beginning to close him up and he would be moved to the ICU.

This is where the brain starts to go on overdrive. They told us it would be a five hour surgery. But was that five hours from when they took him or five hours from when they called to say the actual surgery had begun. If it is a shorter surgery does that mean everything is good or is something wrong. The attendants in the waiting room can't really tell us anything other than the surgery times are only estimates for scheduling purposes, and that you should only worry if the surgery goes too long. We try not to worry, but it's a lot easier said than done.

Finally the surgeon called. Heidi had left the waiting room to make a phone call, so I finally got my chance to speak. Heidi had been so eager for any news that any time someone called she was all the way across the room with phone in hand before I could even stand up. The surgeon actually sounded excited. He said he believed that he was able to remove the entire tumor. He thought it may be imbedded in the floor of the brain stem. That is the sensitive side, and removing it from that area is too risky so they will leave a little bit. But it was imbedded in the side of the brain stem and he was able to completely remove it. He also said that Israel was very stable throughout the entire surgery, and there were no complications. He told us to go to the ICU waiting room where he would meet us once Israel woke up and he was able to check on him.

We couldn't get to the ICU waiting room fast enough. Poor Holly can't move very quickly with her bad hips and oxygen concentrator, and we literally left her with directions and told her we would meet her there. Halfway there we ran into the anesthesiologist. He, too, seemed very excited. He told us how well Israel did during the surgery. So well, in fact, that he had already removed the ventilation tube that he said might need to stay in for about 24 hours. He also said that Israel was responding well to stimulation and was already waking up.

Time seems to fly when you are on an endless procession of phone calls updating everyone, and before we knew it the surgeon was there to talk to us. He was very encouraged by both how well the surgery went, but also at how well Israel was doing. He told us the preliminary pathology report suggested it was an ependymoma. I asked him to spell it because even though I knew I shouldn't, I also couldn't help but look it up on the internet. Giving me a smile that let me know he understood and that he had no chance of talking me out of it, he told me to remember that the internet was unfiltered.

We finally got to go see Israel. I have to admit I was pretty nervous. I have seen people after surgery and it isn't usually their best moment. I was expecting his head to be bandaged and a his face to look grim. But I was pleasantly surprised when I saw him. No bandages. No gray, grim look. He looked more like he was just taking a nap, and not like he had just had brain surgery. And, fortunately, the blankets covered the endless tubes attached to every limb.

I finally felt some relief. I felt a huge load lifted off of my shoulders. He not only made it through the surgery, but they also completely removed the tumor and his recovery was going very well. After another round of calls, I finally had a chance to just sit down, relax, and hold my son. I can't put into words how good that felt.

As the night moved along and settled down, Heidi left to bring her mother home and to check on Pyper. I was able to just relax and sit with Israel. I had so much going through my mind, but being with him did wonders for clearing my mind and calming my nerves.

Later in the evening another baby was brought in to the bed right beside Ike's. He was only six days old and had just had emergency surgery for a malrotation of the intestines. He was so tiny, and I felt so scared for the parents. As scared as I have been for the last two days, I felt grateful that Ike a strong, healthy kid, and that he is not a tiny, fragile newborn. He may be little, but I know he is tough and he will be able to fight this battle.

February 1, 2011 - Fear and Hope

Considering the weekend I’d had, I started the day surprisingly calm. We got to the hospital at 7am for the MRI. The previous weekend Israel’s head started leaning to the left. On Monday he was x-rayed. Everything looked fine. On Thursday, after a few days of ibuprofen and rest it was still the same so he had a CT scan and some blood test. Everything looked fine except for the ALP in the liver. It should have been at 250-300. It was 3800.

Dr. Cox (the pediatrician) was concerned and wanted us to have the MRI, but told us she wasn’t worried. It’s usually a sign that something else may be wrong, but at his age sometimes it just reads high and nothing is wrong. I’ve been told never to research these things on the internet. Now I know why. You read all of these horrible things, and are left to your own thoughts all weekend. Every scenario goes through your mind, and you struggle to remember that the doctor said not to be worried.

After starting the IV, getting him sedated, and waiting for the scan to start, I left Heidi with him at the hospital and ran home to get my mother-in-law and daughter. As I pulled up to the front door to drop them off and look for a parking space, Heidi came out and said that he wasn’t in the recovery room yet. They had found something in his brain and were doing another scan.

That’s when the bottom fell out and I went into emergency mode. I’m good in emergency mode. When I worked with the American Red Cross disaster services years ago I was always at the top of my game as the world around me fell into chaos. I parked the car, got grandma and Pyper situated in the cafeteria, and I went back to set up camp in the recovery room and prepare for whatever would come my way.

After about 15 minutes the nurses brought Israel into the room and told us the radiologist needed to see us. As we walked in, exchanged the normal pleasantries and sat down, he told us he had bad news. He said that Israel had a brain tumor. He didn’t beat around the bush or sugar coat anything. I like that. What I didn’t like too much was the roundhouse kick to the rib cage. That news knocked the wind out of me. Of all the scenarios my venture into internet research created, a brain tumor was not one of them.

I tried to hold my emotions in. I knew that I had to put on my big boy pants and man up. Most people stop listening at this point. They hear the bad news and the rest is a blur. I’m not most people. I was going to listen to every word every doctor and nurse told me. I was going to consider it, process it, digest it. He explained the images, gave his interpretation, explained that the neurosurgeon would be more specific, and told us that he had already spoken with Dr. Cox and she was waiting to speak to us.

When he was done explaining all he could to us, he called Dr. Cox. I think she answered on the first ring. He went through his doctorese with her , then handed the phone to Heidi. As I sat there listening to Heidi on the phone, my emotions caught up with me. The tears started flowing and the radiologist just handed me a few tissues and told me how sorry he was.

I only heard one side of the conversation with Dr. Cox, but from that I could tell that she was already making calls, advising us on the best doctors, and most importantly, making sure we were alright. When she told us how devastated she was to hear the news and how concerned she was for mine and Heidi’s emotional well-being, I knew once again that we had the greatest pediatrician in the world.

When the doctor talk was over, I felt like I jumped out of the chair and ran to my baby. I just needed to hold him. To comfort him. To protect him. My world was turning upside down and that was the only thing I could think of doing to make it somehow feel okay. The next several minutes were a blur, but holding him, and looking at him seemed to slow everything down and let me think.

Heidi left to talk to her mother, and the nurses moved in on me like mother hens. We were the only ones in the recovery room, and this was not their first rodeo. They seemed to know what I was going through and knew exactly what to do…and what not to do. As I grappled with my emotions, trying not to seem like a total mess, I kept trying to explain why I was so emotional. And somehow I came up with the word that explained exactly what I was feeling…fear.

I was afraid. Not for myself. Hell, I’ve seen a lot in my 43 years, and if I know anything it’s that I will make it. I’m a survivor. I was so afraid for this tiny 13 month old boy. I knew that nothing I could do would take away the things he is going to have to endure over the next several months. He will go through so much and I am so scared for him.

I’m also afraid for Pyper. She and her brother have a special bond. I can just see it in their eyes. They love each other so much, and have ways of making each other roar with laughter. She takes care of him. He is her little brother. Sure, she has her moments of jealousy and selfishness like every three year old. But to see them together you would understand how close they are.

Unlike Ike who won’t remember any of this, Pyper is old enough to comprehend and remember. How do you explain something like a cancerous brain tumor to someone so beautiful and innocent? How do you calm her fears when he is away in the hospital for so long? It tears my heart to pieces to think about how this may affect her.

Once Heidi returns the phone calls begin. I have so many people to call. I want to just publish it on facebook, but I struggle with whether it is the appropriate thing to do. Even if it is, some people deserve to hear it firsthand. I will call those people first and decide about facebook later.

The strange thing about this type of news is that every time you repeat it to someone else it is like hearing it yourself for the first time. And I hate having to be the comforter right now. It is MY son that has a brain tumor. It is MY life that has been turned upside down. But here I am trying to make everyone else feel better.

In between calls the surgeon comes by. He is the chief resident and explains that while he is going to go over things with us, the chief neurosurgeon (the surgeon Dr. Cox was trying so hard to get) would be doing the surgery and would also speak to us. Again, I tuned out every emotion and listened intently. He’s a young guy. Probably around 30. It is a university, so this is a teaching hospital. And he has already explained that he will only be assisting the grand poobah. So I felt we were in good hands.

But I was annoyed. He was wearing one of those carved bone or shell or whatever the hell it is necklaces. You know the kind that is some odd shape or symbol, carved from something white and tied to a leather string and tied around the neck. The kind you buy from some burned out hippie street vendor on the beach. Something Spiccoli would wear in “Fast Times at Ridgemont High”. Why? I mean, do you really think you are instilling confidence in parents who have just been told their child has a brain tumor? So there I was, listening to and digesting every word, obsessing about this damn necklace and wanting to reach over and rip it off of his neck.

The rest of the day was a lot of the same. Sitting with Ike in the recovery room until the sedative wore off sufficiently to leave. Doing our best to soothe him since that sedative makes them quite irritable. Listening to doctors and nurses explain what is going to happen, what to expect, what the side effects of surgery are, calling more friends and family, calling the same friends and family with updates, yada, yada, yada.

But in the midst of that chaos, two things stood out. First was Carrie Anne. While we were melting down, she was sitting quietly beside an empty bed reading a book. When she finally caught my eye she smiled and said that everything would be alright. She explained that she was waiting for her daughter who was getting an MRI. This was a regular routine for them. When her daughter was nine months old she was diagnosed with a very rare tumor on her brain stem. They have operated and done chemotherapy, but it is a very aggressive type of cancer and comes back quickly. She says it should eventually disappear for good, but in the meantime they have to check it regularly and stay on top of it.

I was still in emergency mode and making arrangements for Pyper for the rest of today and tomorrow. When I came back into the room Carrie Anne was standing by Heidi and talking. She was sharing her story and letting us know that what we were feeling was normal and natural, thndat after the initial shock we would find the strength we needed and things would be okay. Eventually her daughter, sedated like Israel had been, was brought into the room to recover. Somehow in the midst of our chaos they left. I didn’t see them leave, and I never got to thank her. Maybe our paths will cross again, but I know in my heart that God placed her there for us. Thank you Carrie Anne.

The other thing that stood out was being told about drainage problems and shunts and long term effects. I found myself getting a little resentful. I have always dreamed of having a son that would be a big guy like me and play football. Typical guy thing I know, but it is still important to me. As I thought about the long term effects I realized that he may never be able to do those things. I resented that, and struggled for awhile. But I realized how selfish that was. As much as I love football and would love to see Ike play someday, I realized how unimportant it really is. I don’t care if he is ever able to play football. I just want him to be able to grow old.

Later in the day I called a friend of ours who used to be the bishop of our LDS ward, and asked if he would come give Israel a blessing. As members of the LDS church, we believe that those that men who hold the priesthood have the authority to pronounce blessings through the laying on of hands, just as Christ was able to do in the New Testament. While I have the priesthood and could have given him the blessing, I didn’t feel like my mind was clear enough, so I asked Ted. Without hesitation he said yes and immediately drove up to the hospital.

I don’t remember much of what he said in the blessing. But one part did stand out. He said that Israel would have a long and healthy life. I know some may not have the same faith that I do, and may not understand it, but those words brought a real peace to my soul. They reminded me of the feeling deep down inside that I have had all week. That while Ike may be on a path that won’t necessarily be easy, he will eventually be okay. And I realized that I was feeling something else…hope.

I know we have a rough road journey ahead of us. I don’t know how long it will take or how difficult it will be, but I have hope that this journey will have a happy ending.

It is now late at night. We spoke to the chief neurosurgeon, got the lab work done, and we are scheduled for another MRI in the morning followed by surgery. It is going to be a rough day. And as hopeful as I am about things, I am also still very scared. I cherished every moment I had with Ike today. I am scared to death that this surgery might change him. He may not be the same little happy boy when this is all done, and I wanted to cherish every moment with that boy just in case.

In a few short hours we will head up to the hospital again for what will surely be the longest day of my life. I know I will again be in emergency mode, tending to Heidi, making sure my mother-in-law Holly is comfortable as she fights her own cancer, and checking on Pyper throughout the day. I know I will do all of this as a distraction and survival mechanism, and that through it all I will be scared to death. But I am determined to remind myself that amidst all of that fear there is hope.