Monday, August 30, 2010

Back Home/ Rachael and Addam

Daniel's pathology report came back just before we left New York. The tumor was determined to be a mixture of two types of tumor cells - ganglioglioma and astrocytoma. Pathology reports also categorize tumors by how quickly the cells grow and spread. Daniel's tumor type was labeled a grade two - grade one being the best and grade four being the worst. So his tumor was on the more benign end of the spectrum, but not as benign as it could have been. Daniel's doctors in New York discussed how they thought we should proceed. The "tumor board" could not come to a consesus, in terms of whether or not the surgery should be followed by chemotherapy (radiation was not recommended). We made the decision at this point not to go ahead with chemo.

After almost 3 weeks in New York City, we were given the OK to return home. We got home on July 3, 2002. Daniel's recovery was remarkable - even all his doctors said that. He still had lingering issues with his arm and had to learn to write with his left hand. But in a short time, Daniel was running, biking and playing with his friends like any normal 7 year old boy. Normalcy returned to our lives.

Right after returning from New York, we met a single mother whose son, Addam, also age 7, had just been diagnosed with medulloblastoma. Addam's tumor had been surgically removed, but as I've mentioned before, this kind of brain tumor is highly aggressive. Even after the tumor is removed, cells left behind will start growing again, unless aggressively treated with chemotherapy and high-dose radiation. We got to know Rachael through a friend of a friend. She was a Christian, like us. We became good friends with Rachael.

Rachael was very shocked upon meeting with the oncologist and discovering the extent of brain and spinal damage her son would sustain during treatment. The kind of radiation used to treat medulloblastoma (PNET) always produces mild retardation and causes the bones of the skull and spine to stop growing. Her son was given about a 60% chance of survival with treatment - a 0% chance without it. The decision to put a child through treatment with side effects like that is quite difficult for a parent to make. To add to the difficulty of her decision, 7 year old Addam was a sensitive child, much more sensitive than Daniel, and had a traumatic hospital experience. He said he didn't want to be in the hospital anymore, ever.

Rachael was very interested in alternative cancer therapies and started Addam on the artimisinin right away. She prayed with us, she prayed with her church family and with Addam, before finally making the decision to decline treatment. I remember her calling me and saying, "I just can't submit to a treatment that will kill my son's brain." Immediately after she made the decision to decline treatment, DHS stepped in and took her to court for child neglect, trying to remove Addam from her custody. Wes and I sat in on all the proceedings, which lasted about a week. The judge ruled in Rachael's favor, but by the time the court proceedings were over, Addam's cancer had already returned and had spread to his spine.

We spent a great deal of time with Rachael, Addam, and Rachael's daughter, Aleigha. Rachael had no husband. The weight of her decision was placed firmly on her shoulders. She attended a very charismatic church, and friends from church often gathered in her home to pray for Addam's healing. But Addam very quickly went downhill. Eventually, Addam stopped eating. He needed massive doses of morphine, and when the morphine wore off, he would scream out in pain. One time I stopped over at Rachael's house to visit and was incredibly shocked by Addam's appearance. He had lost so much weight - literally all I saw were skin and bones, and he was awake and conscious only for short periods of time.

Even though Rachael had many friends from church, she wanted Wes and I to be there with her - I think because we probably knew more than anyone else what she was going through. We got a call one day from one of Rachael's friends saying that Addam was near the end. I got in my car, dropped my kids off with grandma, and drove up to Rachael's house in Canby, about a 45 minute drive. By the time I got to the house, Addam had passed away. I walked into Rachael's bedroom, and Rachael was rocking Addam in her arms, and sobbing. Addam's fingers and toes were already blue. We stood by as the coroner came and put Addam's body on a gurney and took him away.

We attended Addam's memorial service, and kept in touch with Rachael closely. She was the strongest woman I've ever met. She was a daily encouragement to me, always telling me how blessed she was to be in the arms of a loving God. She dealt with her sons' passing so well. Each time I talked to her, I marveled at her faith and her strength, and I admired her deeply. She said something a few months after Addam's death, that has stayed with me ever since. "Kristen, before the this trial, I had a faith in God and I trusted Him. But now, my faith is more like a knowing. Because God's presence truly has been with me every step of the way."

The trauma of Daniel's illness, compounded with the experience of watching Addam die, took its toll on me emotionally and spiritually. It's almost impossible for a person to go through such a traumatic ordeal without any consequences or baggage. Wes and I processed through the pain much differently. I think Wes coped with his emotions by immersing himself in work, and when not at work, with recreation. I, on the other hand, felt very tired of being strong. I cried often and in my spirit, I asked the difficult questions: What had we done wrong, if anything? Why did Daniel have to be the one to suffer? Why not me? etc... I questioned God's justice. Interestingly enough, the hardest "why" question for me was this: Why did Daniel live, while so many wonderful children (not just Addam but other children we had come to know at the hospital) die? I do not have an answer for this, and never will this side of eternity. I will not attempt to elucidate my opinions on these ultimate questions - that's not my intent. I will say that I did read the book of Job many times. I found that Job also questioned God's justice and mercy. Job did not understand, because it was not revealed to him, that there was a spiritual drama being played out behind the scenes. Ultimately this was the choice Job made: "Though He slay me, yet will I trust Him." and "I know my Redeemer lives, and I will stand with Him on that day." and by saying this, Job had won a cosmic battle. Eventually, after many months of questioning, I came to a place where I could say these words as well, and believe them to be true.

MY greatest battle became fear - irrational fear. I started experiencing fear and doubt like never before in my life. It was mild at first - but eventually I started worrying about my other two children almost incessantly, not to mention Daniel. I remember taking Elijah to the doctor several times because he had been complaining of stomach aches, and because I thought he looked too skinny. I was afraid Elijah had cancer. It did not help that every cancer doctor we'd consulted during Daniel's illness had wanted to know how healthy our other two children were.

But just as God provided help and healing for Daniel, he provided emotional healing for me. I still needed to be carried by Him - and He wanted to carry me. I memorized Psalm 121 during this time:

I lift my eyes up to the hills, where does my help come from?
My help comes from the Lord, the Maker of heaven and earth.
He will not let your foot slip; He who watches over you will not slumber.
Indeed, He who watches over Israel will neither slumber nor sleep.
The Lord is your Keeper; He is the shade at your right hand.
The sun will not harm you by day, nor the moon by night.
The Lord watches over your life; He will keep you from all harm.
The Lord watches over your coming and going, both NOW and FOREVERMORE.

Friday, August 27, 2010

The Recovery

A cloud of doom had been lifted as quickly as it had descended upon us 8 months earlier. Daniel was going to live. I could almost feel the heavy mental and emotional weights lifting off my shoulders. A nurse summoned us to follow her into the recovery room. Still teary and extremely emotional, I walked into where Daniel was lying. Dr. Kothbauer stood next to Daniel's bed. He could see Wes and I had been crying, and he hugged us both. Daniel was uncomfortable and still very groggy, but Dr. Kothbauer, proud of what he'd accomplished, was anxious to show us how Daniel could wriggle his toes and his fingers. I stood there by Daniel's bed for several minutes just watching him, and whispering, "Thank you, Jesus" over and over.

A normal couple would probably have been very concerned about their child after a surgery as big as Daniel's was, but we felt hardly anything but joy and relief. Everything around us looked and felt different. I took a walk down the street to a corner deli for some lunch. Suddenly, my physical surroundings were visible to me and "in color". The upper east side apartments and shops were so charming. I felt the warmth of the sun and the nice breeze blowing through my hair. I really tasted food for the first time in months, and it tasted so good.

Daniel spent the next few days in ICU. Wes and I took turns staying with him each night through the rest of his hospital stay Once the anesthesia had worn off, we could see the effects of surgery much more clearly. Daniel had lost the use of his right arm. We were told this was quite normal - the medical staff told us the coordination in his arm and hand would, for the most part, eventually return. They had so much experience with patients like Daniel. They knew just how much morphine to give him, and when to start weaning him off of it. Daniel was being weaned off of morphine by the second day post-surgery. He was sitting up in a chair by the third day, and walking by the 4th. Daniel stayed in the hospital for about a week after surgery. Physical and occupational therapists came every day to work on his hand and arm coordination. They "forced" him to try using his arm as much as possible. They played games with him, and they strapped him onto a large tricycle in order to exercise his muscles (see the photos below). Daniel would not regain the coordination in his arm right away. But eventually most of it did return.

A few nurses there were quite fond of Daniel and of us. One nurse in particular, discovered Daniel's preference for hot dogs, and several times she came to work with a hotdog for Daniel from a vendor down the street. Beth Israel had a special play area on the roof (see picture below). We spent quite a bit of time out there, sitting in the sun and watching Daniel ride the tricycle around.

It seemed there was never a dull moment. Daniel was either exercising, walking, playing games, being visited by clowns, pet therapy and music therapy volunteers, or watching movies. Our time there sped by. Eventually, Dr. Kothbauer said he thought Daniel could check out of the hospital, but he still wanted us to stay close by for a few more days. We spent our last few days in New York City staying at the Ronald McDonald house together. We explored the city some more, and found some great places to eat. One place in particular, served lobster, cheap. Daniel loves lobster, so we ate there 2 or 3 times.

After Daniel had been released from the hospital, we visited Times Square Church (David Wilkerson's church). A friend from our church in McMinnville had sent Times Square Church an email, asking them to pray for us, and just letting them know we were there in New York. On the day of Daniel's surgery, we received a visit from a lady who attended this church. She brought us a home-cooked meal, and ended up visiting us almost every day we were there. Abby invited us to attend a Wednesday evening service with her. It turned out to be a very appropriate and fitting way to end our stay in New York, as our hearts were overflowing with thanksgiving to God for all He had done.

Thursday, August 26, 2010

Pictures from New York

Daniel's Tumor Removal Surgery

While staying at the Ronald McDonald house, we met a teenage boy - Armando had come all the way from Guatemala. He was staying at the Ronald McDonald house while recovering and rehabilitating from spinal cord tumor surgery. Dr. Kothbauer shared with us many details of his illness and his surgery. A missionary had befriended him in Guatemala - Armando was very sick. He was losing his ability to walk and no one knew why. The missionary had taken up Armando's cause and eventually discovered Beth Israel Hospital. By the time Armando was flown to New York, he could no longer walk. The tumor had grown too large and had paralysed him. Dr. Kothbauer removed his tumor, but even after surgery, Armando wasn't regaining his ability to walk. Dr. Kothbauer told us that spinal cord tumors eventually will paralyze if left unchecked, and once this happens the odds go way down in terms of the patient's ability to walk again. Although Armando spoke almost no English, we befriended him as best as we could. I felt a strong attachment to him. He was a sweet, sweet boy, always smiling and giving me the thumbs-up sign. And he deeply touched my heart (see photo above).

The day before surgery, Daniel had a pre-op MRI. The MRI pictures would be like a map, guiding Dr. Kothbauer during surgery. He would be using a patented instrument invented by Fred Epstein. This instrument, called a Cavitron, looks more like a dental device. It literally pulverizes the tumor, one tiny piece at a time, and then sucks it out of the spinal cord. Since Daniel's tumor was very large, the tumor removal process would take many hours. Someone would be monitoring Daniel's nerve function constantly, through a high-tech machine that measures nerve impulses. The machine detects any dips or changes in nerve function. A change would cause the machine to beep like an alarm - a warning that the surgeon is getting too close to healthy nerve tissue. Once the alarm goes off, the surgeon must stop the process of removing the tumor in that particular location.

We were required to fill out and sign a great deal of paper work and a consent form. Dr. Kothbauer said there was a 10% chance Daniel would be paralyzed during surgery, and an even higher chance he would lose at least some motor coordination. In spite of all the disclosures and warnings he was obligated to give, Dr. Kothbauer exuded confidence and calm.

After the MRI and our appointment with Dr. Kothbauer, we left the hospital and explored the upper east side some more. I remember we walked past a pet shop, with a litter of baby pug puppies in the shop window. Daniel was enthralled. He sat in his stroller and watched them for a long time, smiling from ear to ear. We would be checking Daniel into the hospital at 7:00 am the next morning, so we put Daniel into bed early.

On the morning of Thursday, June 20, 2002, we arrived at the hospital for Daniel's surgery. We dressed him in his hospital gown, met some nurses and the anesthiologist, and then Dr. Kothbauer walked in. After exchanging pleasantries, he asked us, "Are you ready for this?" I replied, "Yes, I think so. Are YOU?" He laughed, and said, "I am MORE than ready." Alright, then. Daniel was calm and peaceful. No crying or fear. He smiled at us and told us he was going to be just fine! He may have felt fine, but I,on the other hand, didn't know for sure if I was going to be.

During the first few hours of waiting, I kept my composure fairly well. But as the hours dragged on, my mind began to explore every possible scenario. Doubt started creeping in - especially doubt that his tumor was not cancerous. About 3 or 4 hours into the surgery, I began silently talking myself in and then out of every worst-case scenario I could think of. I told Wes that I needed some fresh air. We walked right across the street to a park overlooking the East River. I told Wes how I was feeling - about my fears and doubts. Being my rock and the voice of reason, Wes reminded me that God had brought us all the way to this point, and He was in absolute control. He reminded me that God is good - He wouldn't lead us here, only to pull a bait-and-switch. We sat on a park bench and prayed for quite a while, before making our way back to the hospital waiting area.

We waited and waited. The surgery took about 8 hours. After what seemed an eternity, we FINALLY saw Dr. Kothbauer walk into the waiting area. He sat down in front of us, still in his OR garb, and said these words: "The surgery went very well. I was able to remove a great deal of the tumor - more than I anticipated - about 90% of his tumor is now gone. I would have removed even more, but the electrical monitors went off at one point, letting me know I was getting too close to his nerves." I asked him about the pathology - he said that a flash pathology revealed just what he had suspected. The tumor was not a PNET, but another kind, a slow-growing variety. However, a detailed pathology would eventually provide the final verdict. He told us that Daniel had already started to wake up. He was wriggling his fingers and his toes on command. When Dr. Kothbauer left the room, we stood up and hugged each other and cried in one another's arms for several minutes.

Wednesday, August 25, 2010

New York City - Part Three

We spent all of our free time walking, strolling (Daniel), and exploring. On Monday, we stayed pretty close to the Ronald McDonald House. I don't think we ventured far from the upper east side. One of our first stops involved getting a prescription filled for Daniel. Dr. Kothbauer prescribed Dexamethasone, a steroid, to help relieve the pain in his head. The steroid shrinks inflammation caused by the tumor and creates more of an opening for the cerebral-spinal fluid to flow through. The prescription did make Daniel feel so much better.

I have trouble remembering all we saw and did on the first day. But I do remember we ate dinner at a nice, intimate Italian restaurant. Our Italian waiter was very friendly and asked us where we were from and what had brought us to New York City. We gave him some background information about Daniel, and told him Daniel was scheduled to have a surgery on Thursday. After dinner he brought out 3 Tiramisu desserts - one for each of us - and said it was on the house. We were constantly being blessed by the generosity and compassion of others.

On Tuesday, we took Daniel back to the hospital for pre-op testing. We met a neuro-oncologist that day and a resident in neuro-oncology. Over the following weeks, we would end up spending a great deal of time with both these men and with Dr. Kothbauer. While Dr. Kothbauer was mild-mannered and charming, the neuro-oncologist was more blunt and high-strung. He reminded me of a Harvard college professor (not that I've ever BEEN to Harvard :) ). The neuro-oncology resident orginally came from Romania - he was young and friendly. He performed much of the pre-op testing, while the more experienced doctors interpreted the findings.

The tests regularly performed on Daniel in Portland were a walk in the park compared to the tests performed that day. Gabor, the resident, tested his levels of pressure and pain sensation and every other kind of sensation - from the top of his head, to the bottom of his feet. One of the things they found that stuck out to me, was that Daniel's left hand and fingers were smaller than his right - a discrepancy not large enough to notice unless you were looking for it. Gabor held out Daniel's thumbs and showed us how the left thumb was visibly smaller than the right. This was an indication to him that Daniel's tumor had been growing slowly over the course of many years, maybe even since he was a baby. When I heard this explanation, I wanted to leap in the air for joy - it was one more confirmation to me that Daniel did not have an aggressive cancer.

After pre-op testing was over, we left the hospital, got in a cab and asked the driver to take us down to the lower west side. We were dropped off near Wall Street. We walked and walked all day long, trying to take in as much of the city as we could. We walked to the huge, gaping hole where the Twin Towers had stood. The memory of that tragedy was still fresh in minds and hearts of all who lived there. Plywood walls surrounding the site were covered with letters, flowers, items that belonged to the deceased, messages, pictures, adn lots of American flags. It was a sober and highly touching scene. In utter silence, we looked at it all. Crowds of people were there along with us, and the silence was palpable.

We walked to the edge of the water and looked out at Ellis Island and the Statue of Liberty. We saw the Brooklyn Bridge, we shopped at Macy's on 34th Street. We walked until we were almost ready to collapse. It was really the first somewhat light-hearted day we'd had in 8 months. The surgery was still two days away so our minds were not very occupied with that, and we had just been shown the first glimpses of light in the midst of such deep darkness. The shadow of death was beginning to recede.

Monday, August 23, 2010

New York City - Part Two

The Franklin Hotel was very close to the hospital - we told the person at the front desk we were checking out but we might possibly be checking back in that evening. We walked to the hospital, located in the upper east corner of Manhatten, right next to the East River. We found Dr. Kothbauer's office. Of course, we had no appointment, so we asked the receptionist inside the office if we could talk with Dr. Kothbauer - that he knew who we were. She made a phone call, and then Dr. Kothbauer's personal assistant walked into the waiting area. The first thing out of her mouth was, "You are THE Thomas's....the Thomas's from OREGON? I was told just today to start working on your insurance issues. We're not ready for you yet!" We told her about the free airline tickets - we said that we'd waited 8 months already - we were tired of waiting, and Daniel was getting sicker. She replied, "Well, I have no idea yet whether your insurance will cover this hospital stay, or if Dr. Kothbauer even has an opening for you." We told her that it really didn't matter ultimately what our insurance did or did not cover - we would pay for the surgery for the rest of our lives if we had to. She said, "Well....Dr. Kothbauer is in surgery right now - I will send him a message and let him know you're here." She was irritated with us, but we were beyond the point of caring about proper protocol.

A while later, she returned to the waiting area. She said, "Dr. Kothbauer said that a surgery for Thursday has just been cancelled. He told me to schedule Daniel immediately to fill that empty spot. He wants to visit with you as soon as he's finished with surgery. Can you come back in about 2 hours?"

We were so incredibly thankful! A surgery for Daniel on Thursday - words we'd been waiting to hear for way too long! We went out to lunch at a cute little Irish restaurant. Eventually we made the discovery that New York is littered with cute little Irish (and Italian) restaurants. While eating lunch,we realized suddenly that Daniel's biopsy at Doernbecher was scheduled to happen in 2 days! So, Wes called Dr. Selden's office in Portland to let him know of our change of plans. They were shocked and irritated with us - it seemed everyone was that day!

After lunch we made our way back to the hospital. We waited a while longer, and then we were asked to follow the assistant into Dr. Kothbauer's study. It was a comfortable, large room with a couch, pillows, comfy chairs, and pictures plastering the walls - but there were no pictures of Dr. Kothbauer. This is what we discovered that day: Dr. Kothbauer was Dr. Fred Epstein's protege - we were sitting in Dr. Epstein's study - the one we had heard about who could perform spinal cord tumor surgeries, the one our Portland doctors had dismissed and ridiculed as only marginally successful, whose patients ended up paralysed. We could hardly believe it. We were saddened to hear through Dr. Kothbauer that Dr. Epstein had been in a terrible bicycle accident 2 weeks before 9-11-2001. His injuries had left him severely brain-damaged and he would never do surgery again.

Dr. Kothbauer was a younger man in his early 40's with a Swiss/Austrian accent. He just chuckled to himself over the fact that we had taken off for New York without warning. First, he examined Daniel. Then he proceeded to talk to us in detail about the surgery. He asked Daniel, "How do you feel about having a big surgery like this? You will be well taken care of by everyone who works here with me. We will do our very best to make sure you are kept comfortable. But the recovery will be hard and pretty painful, and you will have to WORK hard after the surgery is over to get your strength and coordination back. Daniel, can you be very brave?" Little 7-year-old Daniel said, "Yes, I am ready to have the surgery. I don't want to have the tumor anymore. I am brave." We agreed that indeed, he was.

An appointment was scheduled for Tuesday to have pre-op testing done, an MRI was was scheduled for Wednesday, and the surgery for Thursday. Dr. Kothbauer's assistant gave us the address to the nearest Ronald McDonald house, on the upper East side. It was relatively close, but too far to walk back and forth from each day, so we hailed another cab. The Ronald McDonald house was not beautiful, by any means, but there was one opening for us. They told us we could stay there as long as we needed. After checking in and getting settled there, we had nothing else to do, but explore New York City, and so that's what we did!

Sunday, August 22, 2010

New York City - Part One

We got to the airport, checked in, and headed to the gate for a Continental Airlines flight to Newark, NJ. Right in front of the gate, we bumped into our old friend John, one of the head pilots for Continental. He was there to visit briefly and pray with us. We discovered he was the one responsible for the 3 first class tickets. After a short visit with John and some prayer together, it was time to get on the plane. We had just sat down in our seats, when a stewardess tapped Wes and me on our shoulders. She said, "I'm sorry for the terrible inconvenience, but one of our pilots needs to take a jump seat in first class, and since the three of you are on stand-by, one of you will have to give up your seat, and take another flight." Wes tried to explain our situation to her, but all she would say to us was "I'm sorry, there is nothing I can do". Wes asked if we could all get off the plane and take the next flight, and she said, "No, there are not enough seats available today. So 2 of you will have to stay on this flight, and one of you will have to get off." Wes and I frantically discussed with one another what we should do, and hastily made the decision that Wes should get off and I should stay with Daniel. He left before I even had time to think.

As soon as he left, questions started flooding into my brain. I had no idea how to get from Newark, NJ to New York City. We had NO reservations of any kind, and nobody there knew we were coming. I figured I could get off the plane in Newark and try to find the nearest hotel. But I was getting more anxious by the minute. I certainly knew I wouldn't be able to find my way around New York City by myself. To make matters worse, Daniel's sickness and pain had been getting steadily worse over the last week, and he had been complaining of severe headaches.

Meanwhile, Wes left the plane and started walking around outside the gate. Several minutes went by, and then our friend, John, ran up to him. He had forgotten that there was something he wanted to give us, and so he had run back to the gate hoping to catch us before the plane departed. He saw Wes standing there, and said, "What in the world are you doing out here??" Wes explained the situation to him. John said, "Let me see what I can do." John walked right onto the plane. In my seat, I turned my head around and there he was. He walked up to the pilot who had taken Wes's seat and pulled out a badge to show him who he was. John said, "Do you think there is any way you would be willing to take a jump seat on the next flight? You see, the man who was sitting in your seat was on this plane by my authority, because his child needs a life-saving surgery in New York City." The pilot listened patiently to the story, and finally said, "Sure, by all means, I can take the next flight." And he got up and walked out! John gave me a hug and said good-bye and a few minutes later, Wes was back on the plane.

We were amazed at what had just happened. If John had not been there and come running back to give us the forgotten items, then Wes would not have made it on that plane. God was definitely at work. We landed in Newark about 5 hours later, and we were told to get on a train leaving the airport which would take us right into New York City. It was a fairly short ride. We were underground when we got off the train. We walked up a long flight of stairs, and through a door leading us to the outside. Our eyes had to adjust to the bright sunlight and right in front of us, stood the Empire State Building! We had brought a stroller for Daniel to sit in, and a few pieces of luggage. We stood there on the sidewalk, just trying to take it all in. Finally, we talked with one another about what to do next. We decided to call the hospital using Wes's cellphone. Since it was Sunday, all the medical offices were closed. Wes explained to the hospital operator our situation. She was extremely rude (the first of several rude people we would meet in NYC, unfortunately). But eventually she connected us with someone who was more helpful. They gave us a few names of hotels close to the hospital. We called information and got the number to one of them - the Franklin Hotel had a vacancy. We hailed a cab which took us to the hotel.

The hotel was very old, but nice and stylish (and quite expensive!). We were thankful to be close to the hospital. That night, we watched "The Wiggles" with Daniel. He loved it. But he was in a lot of pain, and he kept complaining that his head hurt. We had brought some over-the-counter pain reliever, but that's all we could give him until the next day. It was a very long night. The next morning, we got up early, and got ready to visit Beth Israel Hospital and Dr. Kothbauer for the first time. My nerves were stretched as tight as a drum.

Saturday, August 21, 2010


One day, shortly after returning from our trip to California, I was doing my usual internet research and I stumbled onto a hospital website. The words "We specialize in the surgery/treatment of spinal cord tumors" jumped out a me! This was something new, something I'd never seen before! It was Beth Israel Hospital, Singer Division, in New York City. On the home page, there was a tab that said "Contact Us," and so I did. In my message, I included Daniel's history and diagnosis and said his tumor was an inoperable PNET (or medulloblastoma) in the spinal cord. I included my email address. I was prepared for nothing except another closed door, as this was the third prestigious hospital we had contacted for help and information. We had already sent Daniel's MRI's and other medical documents, including his pathology report, to both Cedar Sinai and Loma Linda University Hospitals. They had replied with a "No, We are sorry to inform you that we are unable to provide your son with surgical help or treatment."

To my amazement, I received a response from Beth Israel the same day, in the form of an email from Dr. Karl Kothbauer, neurosurgeon. He said he was very interested in helping us. He said, quite directly, that so far there had never been a spinal cord tumor he could not operate on! He also said something that jolted me, but did not really surprise me at this point in time - he doubted our son had the kind of tumor we were told he had. If he had, then not only would the tumor have grown much more rapidly, but it also would have caused great neurological damage, especially a tumor as large as his. Highly cancerous tumors invade the healthy tissue around them. In Daniel's case, this means that his tumor would have grown into his healthy nerves and caused great motor and nerve damage. He would not be able to walk and/or move his arms normally. You can imagine my consternation at his quick and very knowledgeable assessment. Why had we not been told that before by the neurosurgeons at Emanuel?

He requested we ship him Daniel's MRI films as soon as possible. These films were already in our possession, as the 2 hospitals I mentioned earlier had shipped them back to us. I immediately drove to a FedEx store about 45 minutes away from our home, and overnighted them. As soon as Dr. Kothbauer received the package, he looked at the MRI's and sent me another email. His email contained information that I could hardly take in - in fact, when I showed Wes the email, he could not believe it at first! Dr. Kothbauer said, "Daniel's tumor looks like a non-cancerous, slow growing kind of tumor. It is very cystic (has lots of cysts), a classic characteristic of most tumors found in the spinal cord. Close to 90% of spinal cord tumors are non-cancerous. However, Daniel's tumor is dangerously close to the brainstem. I have operated extensively on spinal cord tumors and am confident I could largely remove, or at the very least, de-bulk it. Can I give you a call and talk to you or your husband on the phone?"

We received this email on a Thursday. On Saturday morning, Dr. Kothbauer called our home phone and talked to Wes. He told Wes in no uncertain terms, "If you want your son to live, you need to bring him here. But first, let my staff contact your insurance company to make sure the surgery and stay is covered. I will call you back on Monday." We contacted our friend, Jeff, who had been running Daniel's website, and he immediately posted this information to the site. Our family had a very special wedding to attend that day, Dave and Rayma Barnhart's - in fact, Wes was "marrying" them. At about 6:00 p.m., during the reception, we got a call from Jeff. He said, "3 first class tickets have been donated to you. But here's the catch - the flight leaves at 6:00 tomorrow morning (Sunday)!" Wes and I discussed it briefly with one another at the reception, and then we said in unison, "OK! Let's go home and pack!"

We had just enough time to do laundry, arrange to have relatives keep Brooke and Elijah, and pack, before getting a few hours of sleep. Very early Sunday morning, we kissed and hugged Brooke and Elijah several times and dropped them off with Grandma and Grandpa in Newberg, and headed to the airport. Nothing is ever as easy as it sounds, right? A major "complication/opportunity for God to show His power" occurred even before the plane had taken off. To be continued....

Wednesday, August 18, 2010

Getting Somewhere

The months spanning from January through April were filled with providing Daniel the best care we could possibly give. After the very intense first few months of his illness were over, I had more time to do research. Wes and I made a good team. Wes left the research up to me, while he spent each day working hard with Daniel, lifting weights with him, taking him outside for exercise, and giving him his supplements. I spent a great deal of time each day learning all I could on the internet about brain and spinal cord tumors. I had gleaned many pieces of information, but the pieces didn't seem to fit together in my mind. One of these pieces had to do with Daniel's tumor type. No matter how hard I tried, I could not find even one case on the internet or anywhere else of a person with Daniel's type of spinal cord tumor. Although medulloblastomas are a fairly common cancer in children, in every case this cancer presents in the brain - specifically the medulla (hence the term "medulloblastoma",or cancer in the medulla). We were still having scattered appointments here and there with Daniel's Emanuel doctors. We asked them this question, and they dismissed us. They said that of course, PNET's are found in the spinal cord, because the pathology said so. But I had yet to find one.

Also around this time, a few people had called or written to tell us about a surgeon in New York they had heard about, named Fred Epstein. We were told that he had invented an instrument enabling him to operate successfully on brainstem and spinal cord tumors. Again, we asked the Emanuel doctors about this. Dr. Olsen, the oncologist, said that Dr. Epstein had acheived moderate success, but most of his patients ended up severely brain damaged or paralyzed. It was as if our questions and concerns were falling on deaf ears, just because we had refused to heed their recommendations on how to treat Daniel.

Daniel had another MRI in March, and it again revealed growth, albeit small. The tumor spots in Daniel's brain had not grown at all since his diagnosis. We felt like the results, although disappointing, still begged the question - why has Daniel survived 6 months, when the professionals told us he'd be gone in 2 or 3? Why is the tumor growth so minimal? Could it be the alternative treatments are working? His doctors said absolutely not. Nothing will treat cancer but chemotherapy and radiation. We had no one to help us. We were left to proceed on our own and to continue doing our own research.

In late April, through the encouragement of several people who had knowledge of Doernbecher Hospital's expertise in the area of treating children's cancer, we made the decision to leave Emanuel. We called Doernbecher and they connected us with Dr. Stacey Nicholson, the oncologist there who specialized in brain tumors in children. He sounded extremely interested to take on Daniel's case, and wanted to see us right away. At our first appointment, Dr. Nicholson had invited Dr. Nathan Selden, a neurosurgeon, to be present. Daniel just sat there with us for a long time as Wes and I related his entire story from the beginning. They were fascinated. Then when we finished, they asked to take a look at Daniel. They performed many tests. The entire time, they were both shaking their heads, and continually saying, "This is remarkable". As they finished, they said the same thing, almost in unison. Your son has remarkable and amazing nerve and motor function for a child with a spinal cord tumor as large as his. First of all, he shouldn't be sitting here (meaning alive) after 6 months. Secondly, he should be at least partially paralyzed. Yet he walks around like a normal, healthy little boy!

Dr. Nicholson and Selden both recommended having another biopsy done. They wanted to wait, though, until after a 3rd MRI at the end of May. We agreed that a biopsy was a good idea. Daniel had his 3rd MRI, and this time, his tumor had grown quite a bit. We were very discouraged and shaken by this. However, the MRI revealed that the spots in the brain had actually shrunk in size! After the MRI, Dr. Nicholson still felt that a biopsy was necessary. So a biopsy was scheduled for the second week of June.

Right after the MRI, we left for California to attend my sister, Bethany's wedding, while fitting in a trip to Disneyland. We had a really wonderful time there. However, Daniel could not hold his head up anymore. His spinal cord was stretched so tight, that it pulled his head down! The pictures of him in my sister's wedding are so precious. He always has a sweet smile on his face, but in every one, his head is falling down and to the side. As a family, we continued in the "live every moment to the fullest" mode. We milked California and Disneyland for all it was worth! We came home exhausted, but happy and thankful for the wonderful family memories that were made there.

Back at home, my desire to do research was stronger than ever. I joined several internet cancer groups - groups for brain tumors, groups to learn about alternative cancer treatments, etc... It seemed I could never get to the end of all the information that was out there on the internet. It was overwhelming. But one day, by God's grace, I finally hit the jackpot - and that will be the subject of my next post.

Friday, August 6, 2010

God Is With Me

Christmas and the New Year came and went. With each day Daniel looked and felt better. Wes, Karen and I were in steady contact with Dr. Singh. He gave us lots of advice, and we closely followed it. One of the things Dr. Singh suggested was to start Daniel on a weight lifting regimen to begin building up his stamina. Everyday we focused on making Daniel healthier and stronger - with foods, weights, exercise, and alternative treatments.

One night, I woke up suddenly - but instead of recalling a dream, there were words going through my mind, and flashing as if on a screen in front of me- "This sickness is not unto death." I instantly was given tremendous peace, and an understanding that God is always with me, speaking his Word to me, even while I sleep.

The next morning, I woke up, remembered the experience, and rushed downstairs to grab a Bible. I knew the words came from the story of Lazarus, and I wanted to read the whole story. In reading it through, this particular verse struck me: "Jesus said, 'This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it.' " God was telling me that He would be glorified through this trial. And although it seemed impossible, I felt God was telling me that Daniel would be OK....somehow.

Many times, I had to remind myself of that experience - my faith wavered and shook, but never crumbled. Daniel had an MRI in mid-January, 2002. MRI days have never been pleasant for me. But this MRI was excruciating. We all were hoping and praying for good news, and that's not what we got. Daniel's neurosurgeon came in to look at the scans with us, and she showed us where his tumor had continued to grow. The growth was small, much smaller than she had expected for a tumor like Daniel's. Nevertheless, there was growth. I remember looking at the scans, and listening to Dr. Wehby, and thinking, "This is not what I'm supposed to hear right now - because this sickness is not unto death!" But God wasn't finished doing His work. Dr Wehby tried to convince us to reconsider chemo/radiation. When she could see we hadn't changed our minds, she told us in no uncertain terms that Daniel would be gone soon. It was only a matter of time.

After the MRI, although discouraged that Daniel's tumor had grown, we were still very thankful for how well he was feeling, and we were more determined than ever to keep doing all we could to help Daniel get better.

Thursday, August 5, 2010

India, Dr. Singh, and More Time in Hospital - Part Two

That same evening, Wes's sister, Karen had been in contact with Dr. Singh. Dr. Singh and his partner had been testing another form of the artimisinin compound - this one could be taken orally. They were seeing positive results. Dr. Singh told Karen he had some artimisinin capsules at his disposal, and we were welcome to have them. Karen and her husband, Brian, decided to drive up to the University of Washington in Seattle to pick them up for us. They drove to Seattle and back as quickly as possible, and by the time they returned, it was almost midnight, and we were already at Emanuel. There was just enough time to hand Wes a bag full of capsules through the sliding door entrance, before the hospital closed. We gave Daniel one of the capsules right away. One of the things Dr. Singh told us before Daniel started the artimisinin was to look for a fever. A fever could be an indication that the artimisinin was working. In the middle of the night at Emanuel, a nurse came in to take Daniel's vital signs, and she commented to us that Daniel had developed a sudden fever. Wes and I looked at one another in surprise - maybe the artimisinin was starting to work!

Another interesting thing happened that night - Daniel had been on morphine since his surgery in October. We were in the process of weaning him off, but morphine can not be stopped cold turkey without pretty severe withdrawals. At McMinnville Hospital, the ER doctors had given Daniel Tylenol for pain, not morphine - and this information had been sent along to Emanuel. They followed suit and continued giving Daniel Tylenol throughout the night.

Early the next morning, Daniel woke up and he looked like a different little boy! He was bright-eyed and alert...and even a little hungry! And there were no longer any outward symptoms of hydrocephalus. Later that morning, a doctor came in to speak with us. First he examined Daniel, and then he proceeded to tell us that a few different radiologists and doctors had taken a look at Daniel's CT scans that morning. Their consensus was that the hydrocephalus was not severe enough at this point to warrant shunt-placement surgery. He told us Daniel looked well enough to go home!

We sat there in shock and didn't know what to think! But as the morning progressed, we could see Daniel was clearly feeling better. It wasn't until the discharge papers came through, that we noticed Daniel had been off of morphine for over 12 hours. We didn't have a clear understanding at that time, but later we realized how the morphine was shutting Daniel down. It had largely been to blame for his decrease in appetite and energy. Daniel never went back on the morphine. We fought through about a week of pretty severe withdrawals, hallucinations, etc... (Daniel's hallucinations primarily involved the building of imaginary Legos :)).But that was nothing compared to what we were fighting against before. We also continued giving him the artimisinin, and saw great improvement in his stamina and pain levels. Over time, his pain levels decreased dramatically.

Earlier that year, we had given Wes's parents tickets for the Oregon Symphony's Gospel Christmas, and we purchased two for us as well. It turned out that concert was scheduled for December 20th. Daniel was admitted to Emanuel on December 19th, and then released on December 20th. We suddenly realized we'd be free to go with Wes's parents after all! We brought Daniel to Karen and Brian's house, and went shopping for some nice clothes to wear. While out shopping, Karen called to inform us that Daniel had just eaten an entire tuna sandwich. This was remarkable! We were filled with joy and relief. The concert was icing on the cake.

We stayed that night at Karen and Brian's. The next day, we drove home, opened up the door to our house, and our front room was literally filled to the brim with Christmas presents for everyone in our family! We later learned that the local hospice chooses one family every year to bless with Christmas presents, and that year they picked us!

Although, Daniel still had an uphill battle with cancer, we felt so thankful that Christmas to be together as a family, and we enjoyed every minute of it. Daniel was able to enjoy it as well, in between hallucinations! The story was still just beginning, but we entered a time of reprieve and renewed hope that lasted for several months. Grappling with the terminal nature of Daniel's illness became easier to bear once his pain, appetite and energy issues had improved.

That Christmas, many gifts and cards came in the mail, often from people we'd never met. One such card contained a verse of encouragement that I was not familiar with - it has since become one of my favorites:

"I remember my affliction and my wandering, the bitterness and gall....Yet this I call to mind and therefore I have hope: Because of the Lord's great love, we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." Lamentations 3:19-24.

Tuesday, August 3, 2010

India, Dr. Singh, and More Time in Hospital - Part One

Our time at Disneyworld was spectacular, but back home in our world things were not going so well. We started seeing a rapid decline in Daniel's stamina and energy. Every day, it seemed he would eat less and less, and often he would throw up his food.

Wes was not working much at this time, but one day he dropped by his office at Water and Light. He walked past a newspaper laying on a table and an article caught his eye. Some research scientists at the University of Washington had discovered that a simple herb compound was being shown to slow the progression of breast cancer. The article went on to explain how an ingredient in wormwood, called artimisinin, can target and break down iron-hoarding cancer cells. Wes's sister is a registered nurse, and as soon as he could, Wes gave her a call. They both thought it would be a good idea to try and get in contact with the researchers. It took many tries, but eventually both Wes and his sister, Karen, were able to talk with one of the scientists - his name was Dr Singh, originally from India. He was very reluctant to help at first, since the treatment was experimental and the research ongoing. But eventually, he agreed to help, saying that he could not stop thinking about our poor little 6 year old boy who was dying and had no other options.

There was one major problem - artimisinin could not be obtained in the United States, only India. We didn't know how we were going to jump this huge hurdle. But Wes's friend, Jeff, had set up a website in order to keep friends and family informed of Daniel's condition. He posted an update about our discussions with Dr. Singh and the problem of obtaining the compound from India. Jeff's dad, John, is a retired pilot for Continental, with many connections in the airline industry. When he heard we needed this treatment and soon, he agreed to fly to India and get it for us! He flew there and back as quickly as possible, because we were desperate and running out of time. While in India, he stayed with some of Dr. Singh relatives. This act of love and sacrifice was hard for us to fathom. He said he actually had a good time doing it - and wanted no payment or reimbursement of any kind.

The artimisinin compound had to be injected into the veins. Wes's sister agreed to do it. I remember it was December 9th the day we drove up to Vancouver for the first injection. Daniel was very sick, and it was a difficult few days for everyone involved. Karen drove down to our house, also, to give him the shots. About 10 days passed, and we were not seeing any improvement.

On December 19th, Wes's sisters, Karen and Patty, drove down to visit. Patty had brought down a Vitamix along with some fruit, to see if we could get Daniel to drink some smoothies. But Daniel just wasn't hungry - his appetite had dwindled to almost nothing and he was throwing up a lot. We sat there visiting with one another - trying to find something positive to say. But we were all on the verge of tears. The situation seemed so inescapably bad. Later that night, Daniel couldn't stop throwing up and started complaining of bad headaches - two tell-tale symptoms of hydrocephalus. In the later evening, Wes and I decided it was time to take him into the ER. Wes took him, and I waited at home. Later that night, he called and said Daniel had been stabilized and was feeling a bit better, but the ER doctors thought he should be taken back to Emanuel hospital.

At Emanuel, he was admitted, and then given a CT scan. By this time, it was getting close to midnight. A doctor read the scans and eventually came in and spoke with us. He said, "Daniel has developed hydrocephalus - this is inevitable since the tumor is closing off the flow of cerebral spinal fluid back and forth between his brain and spinal cord. Fluid is building up in his brain. A shunt is required to drain the excess fluid. There are two options for you here - you could decide you would like to go ahead with shunt placement surgery, or you could just let him go and try to keep him as comfortable as possible. Either way, he will be gone soon."

Wes and I talked it over and decided to go ahead with the surgery. It was scheduled for the next morning. After the doctor left, Wes and I both lost our composure. It had been only 2 months (exactly) since Daniel's diagnosis, and we were not even close to being ready to let him go. Wes was so grieved, he could hardly walk. I remember he just crouched down on the floor and cried. Right at this moment, a lady walked in - an older African-American lady we had never met before, who had knowledge of our situation through a friend of my mother's. She had no idea what we had just heard from the doctor. She said, "I am here to pray for your son. You see, I believe that God wants me to tell you that your son has a great message to proclaim and a calling on his life - he is going to live." She proceeded to pray a wonderful prayer for him. We were enormously comforted by her prayer and her presence, but then she left, and we had to grapple once again with Daniel's grave situation. This sweet lady came and left and we have not seen her since that day.

Monday, August 2, 2010

Make A Wish

After the decision was made to decline radiation/chemo, we started treating Daniel using as many natural foods and supplements as we could afford. Since Daniel was not yet able to swallow pills, we had to mix the crushed pills or emptied capsules into some jello, pudding, or applesauce. This didn't cover up the taste very well and still tasted pretty gross - so the whole process of getting these supplements down his throat took lots of time every day. We also started using the Rife machine that I had mentioned in an earlier post. Wes's dad had purchased another Rife machine (so we had two different kinds) - this one delivered the electric frequency via handles (they look like jump rope handles) instead of a flashing light. We used both of these machines every day. Daniel was still needing large doses of pain medication.

One day, a few weeks after our decision was made to decline treatment, Daniel woke up in the morning feeling very lethargic. He stayed in bed pretty much all day and slept - and the few times he did wake up, he was in a great deal of pain. Because the oncologist had warned us repeatedly that Daniel's time was short, the thought could not escape our minds that perhaps this was the end. It was a very dark day. Wes and I didn't know what to do. There was nothing we COULD do. Wes and I just sat there with Daniel off and on - we looked into each other's eyes and saw the same thing - tears constantly on the verge of spilling out, and fear of losing our son. We called our Pastor, and he came by and prayed with us. Pretty late that evening, Daniel awoke and said he felt like sitting up. He eventually got up and walked around. He said he felt much better. Wes and I breathed sighs of relief. This was the first of about 2 or 3 occasions where we thought death was imminent. Looking back, it could be that Daniel's body was so tired from fighting a surgery recovery and fighting the disease at the same time. Or it could be that the morphine had reached a saturation point. I really don't know - but we were so incredibly relieved and thankful to the Lord for giving us more time with him.

Right around the last week of November, we got a call from Make A Wish. A few Make A Wish representatives wanted to come out to our house and grant Daniel a wish! These representatives were so wonderful and nice - I "wish" I could remember their names. We talked with Daniel before their visit about the different kinds of wishes he could make. He wanted to take a trip. We had been to Disneyland several times, but never Disneyworld. So Daniel's wish was to go to Disneyworld. We told the representatives his story and his prognosis. We told him he was given only a short time to live. So the Make A Wish foundation sprang into action. In just a few days, they had arranged the entire trip for us and told us we could leave as soon as we were ready. The night before the flight, Make A Wish threw a party for Daniel - we decided to have the party at Wes's sister and brother-in-law's house, since they live close by the airport. A limo picked us up in front of our house and took us to Vancouver. All of Wes's family was there at the party, as well as a few neighbors of ours. Make A Wish had booked a room for us at the Embassy suites for later that evening.

The next day our whole family got on the plane heading to Florida.
Every one of us had on large Make A Wish buttons, so everywhere we went people gave us the royal treatment. On the plane, we were given whatever snacks or drinks we wanted. By this time, the steroids had completely changed Daniel's body. He no longer looked like the same person. He had gained so much weight that he actually weighed as much then, at age 6, as he weighs right now at 15. Before the trip we had started weaning him off the steroids but the effects were still very visible, and he still had a huge appetite. Fortunately, Make A Wish had given us so much money for food, that we literally could not use it all if we had tried.

Make A Wish booked us a room at the Polynesian - a very nice Hawaiian-themed hotel inside Disneyworld, complete with a man-made "beach" right outside and several amazing pools. We were able to stay at Disneyworld for one week - Thanksgiving week. We used a stroller for Daniel so that he didn't have to spend much time walking. Daniel's favorite thing was the pool, and he seemed to feel his best when he was in one. We ate at all the fanciest restaurants. Make A Wish had even given us money to spend on souvenirs.

While in Orlando, we visited "Give Kids the World" -a resort owned and operated by the MAW organization, for MAW families. There we met a family whose daughter also wished for a trip to Disneyworld. She had a heart transplant and was doing well. I remember feeling jealous of that family. Their child was expected to recover and live, and ours was expected to die. And it made me so upset. Later, I found out this is a very real phenomenon - it's called "tumor envy" - although in this case, the family didn't have a child with cancer, but a child with a heart condition. I had to learn to be thankful for the wellness and healing of other children, and happy for the families.

To say this trip was wonderful would be an understatement. We were able to step out of the "darkness" of our lives at home, and just have fun. And the amazing thing is how well Daniel felt the whole trip long! His pain and symptoms almost seemed to disappear. I know the prayers of the saints and a merciful God had everything to do with it. Ironically, on the last day, we were returning our rental car at the airport, and Daniel started feeling sick right then, and threw up. He went downhill very quickly from this point.

(I would like to say that Make A Wish is an INCREDIBLE organization, that goes above and beyond expectations, for each and every Make A Wish child.)