Friday, July 30, 2010

A Grandmother's Mission

The following is written by my mother. I include it for the purpose of showing that during our lowest points, people were standing in the gap for us and for Daniel, in an incredible way:

"During these days of darkness, something amazing was happening, prayer. Wes’ long time friend set up a web page just for Daniel, telling his story, and keeping people updated on the latest issues, and it had a page where people could send prayers to Daniel. They were coming in from worldwide.

This was all happening just prior to Christmas, 2001, and I sent out, just with my limited Christmas card list, stars with Daniel’s picture on it. I asked that people hang the star on the Christmas tree as a reminder to pray for him. I also asked that, if they would like to, they make a star and write a prayer on it for Daniel, and send it to him.

Soon the stars started coming in. The people who initially received the request started telling their friends and families, and they in turn were spreading the word as well. Stars were arriving daily from all over the country, sometimes in large envelopes with dozens at a time. Some of the most precious prayers came from a class of children, simply praying, “God, please make Daniel get well.” Some of the prayers were mighty and prophetic, as the prayer warriors stepped up for action.

On one occasion, a friend of mine from high school, with whom I kept in contact but had not seen in 30 years or more, walked into a women’s ministry luncheon at her church in California, and said that there were stars all over the tables with Daniel’s picture. The ladies were asked to write a prayer for Daniel. She remembered the Christmas card, and realized, “Oh my, this is my friend’s grandson.”

Another friend from Colorado said that she had heard on their local Christian radio about a little boy named Daniel who needed prayer for healing.

At a point when Daniel was in the hospital, I strung all the stars on a string and brought them to hang all around Daniel’s bedroom. The stars stayed there for a few years and covered Daniel in prayer.

One friend of mine, Ann, worked at a local Portland hospital, managing the cleaning service for one of the floors. People from all over the world worked under her management. They were sending word back to their home churches in Russia, Africa, Mexico, South America, China, Viet Nam, the Philippians and more. The home churches were declaring healing for Daniel. One day, Ann was walking down the hallway and observed a group of workers gathered in the break room praying for Daniel. They all took up a collection and wrote cards to Daniel in their native languages and asked that Ann deliver them to Daniel’s parents.

The prayers continue to this day, as people are reminded of Daniel’s journey. There is a band of prayer warriors, who at a moment’s notice, lift Daniel to the throne of God, whether for a crisis or for praise and thanksgiving for all that God has done."

Life and Death Decisions

These consultations left us feeling emotionally stressed beyond belief. But again, God was merciful. He sent people into our lives to give us words of comfort and wisdom - parents who had gone through similar trials. Wes has a good friend who works with him at McMinnville Water and Light, Bob Banke. About a year before Daniel's diagnosis, he and his wife, Carmen,had a precious son who died of bone cancer when he was 12. Scotty had passed away on Daniel's birthday. Scotty's life and tremendous faith in Jesus, had touched countless people.

Bob and Carmen came over to our house and shared with us. Carmen explained how they had tangibly felt God's presence with them, carrying them through it all. His mercy and grace had covered them during the most painful times. They told us to remember that first God, and then Wes and I, as Daniel's parents, were the ones in charge, not the doctors. When it comes to treating a child with cancer, it's tempting to release control to the doctors almost entirely, and to surrender to their wishes and medical knowledge. But cancer doctors do follow cookie-cutter protocols. Bob and Carmen related to us some instances in Scotty's journey where they had made the mistake of giving the doctors too much authority. Not to say, doctors don't help tremendously - they do, but they are not the ones ultimately in control of the outcome.

Wes and I began in earnest to process through the issues. We prayed. We looked into alternative treatments. We did research on the internet to learn more about PNETs, and whole brain and spine radiation. And like I had mentioned before, we started manipulating Daniel's diet and giving him supplements. The auto shop owners whose daughter had died of leukemia, also gave us advice that resonated perfectly with Bob and Carmen's advice.

After a few days of deep discussion and prayer, Wes and I both realized we were coming to a unity of mind and heart, on how to proceed. We both felt the conviction to decline radiation and chemo, which could not save Daniel anyway. We did desperately want to buy Daniel as much time as possible. But buying time at the expense of killing his brain, seemed like an unmerciful and selfish thing for us to do. And most likely, he would spend the rest of his short life sick and miserable from the treatments. We recalled Pastor Rons' dream he had shared with us. We decided to proceed by doing everything we could to help him within the realm of diet, nutrition, and natural healing. And we would leave the rest to God.

The oncologist's plan was to begin treatment as soon as possible. We met with Dr. Olsen about a week after the previous consultation with her. At first, Wes played both sides of the fence, even though in our own minds the decision was made. The longer the discussion went on, the more ammunition we were given in favor of declining treatment. Once we finally informed her of our decision, she strongly opposed it. She told us we were making the wrong choice, as treatment would most assuredly buy Daniel a few more valuable months, even possibly a year or so (although the odds were stacked against this). And the result of doing nothing, would be that Daniel would die in probably a couple months. If Daniel's tumor had not been inoperable, and his prognosis not so very grim, I'm sure she would have taken us to court for child neglect - and these court decisions usually go in favor of the doctors. We also discussed our decision wth the radiation oncologist, and he was much more understanding. There were a few more meetings with Daniel's oncologist, and she used these appointments to continue trying to convince us to change our mind, and to induce guilt. She explained to us in graphic detail what would happen very soon - hydrocephalus would set in, a great deal of pain would be involved, before he finally slipped into a coma and died.

We had made our decision, and we were on our own, meaning that Daniel's current doctors had largely been taken out of the picture. But somehow, despite being devoid of any earthly hope, we still had hope. I recall these verses from Romans 5: "And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." We held on to the hope that God is bigger than this terrible situation. We trusted in His ability to do exceedingly abundantly beyond all we could ask or imagine, whether that meant saving Daniel's life, or taking him to heaven and using his and our experience to bring people to Him.

(If you'd be interested in hearing an absolutely beautiful version of the song, "I Have a Maker", the song I would sing Daniel to sleep with every night, go to youtube and in the search box, type in Passion I Have a Maker. Wowwww!!)

Thursday, July 29, 2010


At the Spaghetti Factory Just Before Surgery


Enjoying a Shirley Temple Before the Storm


Waiting for Surgery and Celebrating Dad’s Birthday

video


Darkness

Soon it came time to make the trek back up to Portland for more consultations- first with the surgeon , then the oncologist. This turned out to be one of the darkest times in our lives. Daniel's oncologist had a perpetually "optimistic" demeanor and seemed nice enough, although we eventually came to discover a different side to her. During Daniel's first appointment she discussed with us, in her bouncy way, the need to start chemo and radiation very soon. Our first question to her was, "How is this going to help him?" and her response was, "We don't know for sure, but it may buy time and keep him alive longer than if you just did nothing." She went on to explain how the chemo regimen would be mild, as well as the side-effects, but that chemo in itself is not sufficient to stop the tumor growth - that radiation is the main component of brain/spinal cord tumor treatments. She told us our next step would be to visit with a radiation oncologist.

At this point, we started soaking up all the information we could, and keeping all options open. The time came for our consultation with the radiation oncologist. The days preceding this were very tough for us all- we had been trying to wean Daniel off of morphine and on to milder forms of pain relief - but without much success. On our trip up to Portland for the consultation, Daniel was extremely uncomfortable. It seemed he was either crying out in pain, or asleep. The terrible pain was sapping him of energy. When we arrived in Portland, we immediately started looking for a store to buy more pain reliever. We had to carry Daniel - he couldn't walk. When we finally got him to the appointment, he just laid on Wes's lap and slept. Both of us were already on the verge of tears.

The radiation oncologist was named Dr. Wynn. He was kind, and mild-mannered. He gave us a great deal of information during the appointment, but what stuck out to us the most was the amount of radiation Daniel would need, and the side effects. He said Daniel's type of cancer spreads easily througout the central nervous system - in fact spots of tumor had already shown up in his brain. So Daniel would need large-dose radiation to the brain and entire spine. He went on to list the side-effects: "mild" mental retardation, emotional retardation, and the bones of his spine and his head would stop growing. We were not expecting this. It felt like a punch in the stomach - especially after reading and researching alternative treatments that had no side-effects, and would only make him stronger. So Wes had some serious questions to ask Dr. Wynn. He told me to take Daniel out of the room. Although not present for the following conversation, Wes later related to me the essence of it. Wes asked him, "What is the survival rate with this kind of treatment?" Dr. Wynn replied, "Well, there is no survival rate for inoperable PNET's in the spinal cord. The treatment would buy him some time. Maybe a year or so, maybe less." Extremely distressed by his response, he then asked, "Dr. Wynn, if this were your son, what would you do? Would you proceed with treatment?" I credit Dr. Wynn for his honesty - "Your son has a fairly short time left on this earth. And the treatments are pretty brutal. I honestly don't know what I would do."

On the way home, we had to choke back the tears. We felt a tremendous burden - immense decisions about Daniel's life, health and future were placed on our shoulders. No one else could make them for us. But we took comfort in this: God is the author of Daniel's life - all his days were ordained by Him before one of them came to be (Psalm 139). We would seek His face, and He would help us. And he would never lead us astray.

We decided to start spending as much time as possible together as a family. Wes, fortunately, had months of sick time built up, and he stopped going to work. Every night, we had a slumber party in Daniel's bedroom - all of us. We would talk, and we would read a book together. We read "Swiss Family Robinson" - a book that we knew the boys would enjoy. And we prayed together - and we sang. Every night, I sang Daniel to sleep - every night the same song - "I Have a Maker."

I have a Maker
He formed my heart
Before even time began
My life was in His hands

I have a Father
He calls me His own
He'll never leave me
No matter where I go

He knows my name
He knows my every thought
He sees me when I fall
And He hears me when I call

That song isn't sung much anymore at church. But whenever it is sung, I always cry, and so does Daniel.

Wednesday, July 28, 2010

Home to Face the Music

Daniel was released from the hospital on Oct. 31st - Halloween. While raising our kids, we had placed very little emphasis or importance on Halloween. Some years they would dress up in costumes and stay at home and pass out candy - other years, they wouldn't dress up at all. But we always made sure to visit a pumpkin patch every year, after which we'd carve the pumpkins and bake the seeds. We didn't make it to a pumpkin patch this year, but when we got home from the hospital, the kids DID dress up in costumes and went trick-or-treating for the first time. They were invited by the neighbors (the same neighbors who had come up in the middle of the night to visit us after Daniel's diagnosis) to go with them and their kids. Daniel dressed up as Darth Maul from Star Wars, complete with a red, double-ended light saber. He was quite pleased with how he looked in his new costume, and it was a special night for him.

This brings me to an important topic. When we got home, Wes and I started to discuss some very weighty issues together. One issue we discussed was this - what should we tell Daniel? Should he know the precariousness of his disease? After deep thought and prayer over this, we decided not to tell Daniel everything. We kept to ourselves the knowledge that Daniel was supposed to die. Our logic went this way - we felt the knowledge of a terminal illness was too heavy a burden for a 6 year old bear. We felt that as parents, we were given the responsibility to bear the emotional burden FOR him. As Jesus told us he would carry our burdens, so we would carry this burden for Daniel. So we shielded him from discussions involving the terminal nature of his illness, and we kept our focus on life, and living each day to the fullest.

Almost immediately after returning home, we started hearing from people who had first-hand experience or knowledge of alternative therapies that would be worth checking into. Most of these treatments involved supplements for strengthening the body's own immune defenses, enabling the body to fight off the growth of cancer. We were given several books about alternative cancer treatments and healing foods. I started immediately to read them. A couple we'd never met before heard of Daniel's diagnosis. They lived just a few blocks away from us - their own daughter had died of leukemia a few years before. The husband was an auto mechanic and owned a shop. Since the death of their daughter they had dedicated their lives to helping people with cancer, and the auto shop lobby was set up for cancer patients to come and receive healing treatments and advice. They told us about something called a Rife machine, named after Rife, a scientist who invented the technology behind it- essentially the machine looks like a long, cylindrical lamp connected by wires to a computer. The computer tells the light to flash at a specific frequency. The concept behind the machine is that everything, even cancer, has its own frequency and you can use that frequency to break down cancerous tumors. I know, it sounds very bizarre, and this is a very simplified, layman's explanation. They gave us an offer to come by the shop with Daniel anytime. Eventually some friends who had one of these lights, let us use it and keep it in our house.

All this information came at us so fast, it was hard to process at first. But it did serve to bolster our hope that maybe these alternative treatments could extend Daniel's life and treat his cancer. Perhaps God was leading these people to us. We also quickly learned that alternative treatments for cancer overwhelm the internet - many of them are bogus money-making schemes. But we felt like it was worth a try to check out the alternative options out there - after all, we had nowhere else to turn. At the very least, we could start giving Daniel foods and supplements that would strengthen his health and body.

It was nice to be home, but Daniel still had lots of pain and needed attention around the clock. There were several appointments on the books with Daniel's neurosurgeon and his oncologist, Dr. Janice Olsen. We had lots to think about and many important decisions to make (important is quite an understatement!). We felt more than anything at this point, that we needed divine wisdom to make the right decisions for Daniel. We started praying fervently that God would guide and direct our steps. Before our first appointment with the oncologist, we were visited at our home by our Pastor. He said he had something very important to tell us. Pastor Ron is the kind of guy who hardly ever gets emotional or allows himself to be pulled along by his feelings. Yet, what he told us was incredibly uncharacteristic of him - he said, "I had a vivid dream last night. And I felt like in the dream God was telling me to tell you not to do any chemo or radiation for Daniel." The words were direct and straight to the point. It was quite an amazing thing to hear from our very logical, doctrinally conservative and unemotional Pastor. We took his words and stored them away in our hearts and minds.

Tuesday, July 27, 2010

Still In the Hospital

The day after Daniel's surgery, we were visited in ICU by Dr. Wehby. She had some very interesting news - the tumor diagnosis given the day before was wrong. During surgery, a slice of tumor was sent to OHSU hospital, and they sent a detailed report back to Emanuel. OHSU was calling it a primitive neuroectodermal tumor - medulloblastoma is another name for it. Because of this discrepancy, 2 more hospitals were being sent a tumor slice for their evaluation and opinion - Johns Hopkins and St. Jude. But for the time being, the diagnosis was changed from glioma to PNET (a short way of saying and writing the tumor name I mentioned above). We received the news with gladness, but Dr. Wehby informed us that PNET's are only slightly less aggressive. A PNET in the spinal cord is still inoperable, still ultimately fatal, but could possibly be responsive to chemo and radiation.

Daniel remained in ICU for 2 days altogether, and then moved to a regular room on the children's floor. The catheter was finally removed after it became clear to the doctors that he had lost no bladder function, but Daniel's post-surgical pain was difficult to manage. At this point, doctors and residents from many different specialities started coming by to speak to us and evaluate Daniel. These evaluations are extensive, the purpose being to check for any loss of nerve function, pressure and pain sensation, reflexes, motor coordination, etc... In spite of his pain, Daniel was put through the ringer by many doctors. To top it off, we were receiving visits now from cancer doctors - oncologists. They came to discuss the commencement of chemotherapy and radiation. The appointments would begin in earnest after Daniel had recovered from surgery. There was another important issue they discussed with us . On that Monday before his surgery, when Daniel was first admitted, he had been given dexamethasone, a very powerful steroid - the reason being to help with pain by reducing inflammation in the spinal cord, both before and after surgery. The doctor told us that very soon we would begin to notice the side effects of steroid use - severe weight gain, increased appetite, and irritability/aggressiveness. Sure enough, by the time Daniel was finally released, he had started to get very puffy around the face, chest and stomach, wanted to eat constantly and eat everything in sight, and became easily irritated.

As time went by his surgical pain improved a bit, but not much. He was given morphine after surgery. For reasons we still do not understand, Daniel's after-surgery recovery seemed almost non-existent. The pain was an ever-present reality for Daniel, and was only made manageable with powerful medication - morphine and its derivatives. The removal of the laminae during surgery was intended to keep the neck and back pain under control, but we saw very little evidence of this, at least in the first few months.

In our moments of privacy, Wes and I provided each other with as much comfort as we could. We read scripture together, prayed and tried to encourage one another. I grabbed ahold of 1 Peter, and read it over and over, as the theme woven through the entire book, is trials. I remember being strongly aware that the situation we were in, is where faith meets real life. I wanted my faith to be proven genuine, and to be demonstrated by my ability to believe and act upon God's Word. James 1:12 says, "Consider it pure joy, my brothers, whenever you face trials of many kinds, because the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." How can a person understand the over-arching purpose of a child suffering from cancer? I still have a hard time understanding it. But at the time, I did know for certain this was a test of faith like no other - that trials are allowed for a reason and a purpose - and I wanted in my own life spiritual maturity and completeness. I found it interesting that long before this trial, I had a strong desire to memorize James and Philippians, and actually accomplished that goal - these two books of the Bible speak often of suffering and trials. All the words from these two books had been hidden in my heart - they had taken root and blossomed, and I went back and recited them contnually in my mind. Wes had been teaching God's Word for 10 years prior to Daniel's diagnosis. He also had the Word hidden in his heart, and a deep understanding, which proved extremely profitable to him.

Brooke had a birthday while Daniel was still in the hospital. We tried our best to celebrate with her - taking her out to eat and to the mall for a little shopping spree. Brooke and Elijah were very easy and sweet during this time - they could sense the stress we were under, and tried their hardest to be compliant, and as understanding as children of 9 and 4 could be.

Monday, July 26, 2010

"D" Day

In the days leading up to Daniel's Oct. 24th surgery, Dr. Wehby discussed her strategy at length with us. A team of surgeons -basically all the best and brightest neurosurgeons she could assemble from Legacy Emanuel - would be assisting her in the operating room. On Oct. 24th, we brought Daniel to the OR at about 7:30 am. We stayed with Daniel until after he'd been put to sleep, then we were told to wait in a waiting area. We walked into the waiting room, and already dozens and dozens of people were there. The hospital moved us all to a larger area. Eventually, we had a total of about 60 people waiting with us! And that didn't include anybody in my family, as my own mother, coincidentally, was scheduled for a hysterectomy that same day.

To be honest, I was in no mood to talk with people, and just wanted to sit by myself and think. But having all those people there helped to distract my mind from obsessing over Daniel. Several of those who had come brought food, so everyone had something to eat, but I couldn't eat anything. Periodically, a nurse from the operating room would come out and give us updates. These were essentially devoid of any real information. Every update consisted of words like these, "Everything is going fine. They just started cutting... or they opened up his spinal cord and are working on the tumor, etc..." - what we really wanted to know was not revealed to us at all. The surgery dragged on for a total of 7 hours. Towards the end, the OR nurse came out again, and she had tears in her eyes. She said that all the people here supporting us made her cry. But I just knew her tears had something to do with the goings on in that operating room.

Finally, we were called to follow the nurse into another conference area. It was very strange walking out of a room full of people, all waiting to hear the news. I tried to maintain composure but found it very difficult to keep from shaking. I was so nervous and just had a strong feeling the news wasn't going to be good. Dr. Wehby was there to talk with us. She started giving us a bunch of technical information about what the tumor looked like, etc. She even showed us a few pictures of it. Then she said, "The tumor is NOT an ependymoma, as I had hoped. The tumor is a glioma, grade 4, meaning it's highly aggressive. A tumor like that in the spinal cord is inoperable, and fatal. I'm afraid there is nothing I can do for him." We asked her how much time he had. She said about 3 or 4 months, maybe. Then I did something that really surprises me, when I look back on it. Instead of breaking down, which was what I was "supposed" to do, I started telling her about our eternal hope founded upon our relationship with Jesus Christ. I remember saying, "Dr. Wehby, we are all going to die, one way or another. This earth is not our home. We are on a journey and heaven is our true home. God is good all the time. If he wants to take Daniel home to be with Him, then we are at peace with that. I know we will see him again someday." She was a bit shaken - but she said, "I'm glad that you have peace and I certainly hope that you are right." I remember that Wes and I were fairly calm, upon hearing the news. Although the news was beyond devastating, God had given us a peace and a strength for such a time as this. Then she went on to explain how she had removed the laminae from Daniel's backbones (the laminae are the part of the backbones facing the back). The spinal cord was much larger than normal because of the tumor, and was pushing up against Daniel's backbone. This was the cause of Daniel's intense pain. So without the laminae the spinal cord had nothing to push up against. A flexible "patch" was put in place of where the laminae used to be.

Going back into the waiting area to face the room full of friends and family was so very difficult. We stood there and had to break the news that Daniel - grandchild, nephew, cousin, friend to the people in that room - was given only a few months to live. Wes's sister burst into tears. Most of the people just sat there dumbfounded. We could not stay and talk with anybody because they were bringing Daniel out of surgery and we had to be there with him. I heard that the people from the waiting room remained for quite a while and prayed together.

Daniel was brought immediately to intensive care. Wes and I sat there together with Daniel in that small room. staring at our precious little boy, unable to process through what we'd been told. He was in so much pain, and a catheter they'd put in during surgery was hurting him really bad. The nurse caring for Daniel was named Elliott. He was fully aware of Daniel's prognosis and expressed a great deal of compassion for us. He was in Daniel's room in ICU almost his entire shift, trying to help in any way he could. He tried so hard to make Daniel comfortable and pain free, although it was a very long night for us all. He became Daniel's friend over that day and night, and when Daniel was moved into a regular room, Elliott still came by to visit, and even brought him a gift.

The next few days were extraordinarily difficult for us emotionally. But it's amazing how hope can survive even the grimmest of circumstances. And somehow despite all the bad news, hope started slowly making its way to the surface of our minds and hearts.

Sunday, July 25, 2010

Limbo

If you've seen the movie, Inception, then you know that Limbo is when a person is trapped inside of a dream and they can't get out. This is what happened to the Thomas family on October 19, 2001. But it wasn't just a dream - it was more of a nightmare. In my last post, I left off with Wes and I trying to get some sleep in the hospital room with Daniel. As you can imagine, sleep did not come easy. Our neighbors, who we had broken the news to earlier that evening, drove up in the middle of the night to see us. They were not able to sleep, either. This marked the beginning of an incredible outpouring of support - by family, church family, friends, and even people we'd never met.

Daniel was released from the hospital the next day. A surgery was scheduled for Wednesday, October 24th (the day after Wes's birthday). Sometime that day we gave Daniel an explanation of his condition and told him he would be having a surgery. As you would expect of a 6 year old, he was fairly oblivious. But we told him these words which became almost a mantra of ours over the next several months: "Daniel, we are trusting in God to watch over and take care of you. He loves you even more than we do, and we love you so very much. We, and lots of people, are going to be praying, and Jesus will be there holding you and carrying you the whole time. You can fully trust your life to Him, because He is always in control." Daniel showed a great deal of trust at this point, and that trust never wavered, even once. God, by His grace, filled him with a peace that can not be humanly explained.

We spent that Saturday in Vancouver with Wes's family. We took pictures of Daniel with all his cousins. On Sunday, we went to church. The pastor made the announcement of Daniel's illness and upcoming surgery. Some people in the congregation already knew -but most did not, since the diagnosis came only 2 days before. Our pastor, Ron Smith, had a hard time getting the words out. I've seen him cry only a few times in 18 years of knowing him, and this was one of them. Our church family was obviously very shaken. My parents were at church with us. Of course, they already knew. From this point on, both Wes's family and my family became the rocks that we would lean on for strength, support, wisdom, advice and most of all, prayer. I think in SOME ways, Daniel's illness was harder on them than it was on us - being in a position where they had to just watch us go through it. But as they ALL believed in the power of prayer to touch and heal Daniel, prayer became their tireless mission.

On Monday, we called Daniel's neurosurgeon, because he was having such a difficult time with pain. She decided to admit Daniel into the hospital that day so he could be watched and monitored before the surgery. While in the hospital, Daniel (and Wes and I) received an incredible number of visitors. His room was a constant buzz of people coming and going. We were also visited by many different doctors. Doctors bring with them such an air of confidence and authority - but none of them seemed to be able to give us any kind of useful information. As I look back, I now realize that they were almost as in the dark as we were.

Wes spent his birthday in the hospital. Our 2 other children, who were staying with relatives, came often to visit. Wes and I spent our few quiet moments praying, talking through the difficult issues together, trying to make sense of what we'd already been told by the doctors, and devouring God's Word.

Friday, July 23, 2010

The Day My Heart Was Broken - Part Two

Wes decided to check with a nurse on the floor to see if she had any idea what was going on. She said she'd check for us. She came in a few minutes later, all smiles, telling us that everything was going fine, they just weren't finished yet. One more hour went by. Then the same nurse came in and said, "Your son is just waking up and the MRI is finished. Please follow me." She was not all smiles anymore. I had no idea where we were going, but it soon become clear we were not following her to the MRI department but to a conference room. My heart immediately started to race. We stepped into the conference room and the spine specialist from Tualatin was sitting in the room. I said to Wes, "That's the doctor we saw in Tualatin. What's he doing here?" I instantly knew then and there, the answer to my question. Something was wrong. I felt dizzy and sick to my stomach.

The doctor was very grave. We sat down in some chairs facing him. He said very slowly and somberly, "I'm afraid the MRI found something, and it's not good....at all. Your son has a very large tumor in his spinal cord. We think he may have some tumor in his brain, as well." Wes and I just sat there, holding hands, completely frozen. It took a few seconds for the information to register. He continued, "This is outside my area of expertise. I deal specifically with the bones of the spine, but your son needs to see a neurosurgeon. A pediatric surgeon named Dr. Monica Wheby has been called, and she's on her way to the hospital right now to talk with you. I'm very sorry..." He was visibly upset.

We asked Dr. Keenan some questions, which he was reticent to answer. I recall Wes saying over and over, "I didn't sign up for this." It was a pretty short meeting. We got up and started walking back. It felt like I was walking in a fog, or a cloud. We entered the hospital room, and Daniel was there, lying in a bed. He was still groggy from the anesthesia, but awake. He looked so precious and beautiful and sweet lying there. I wanted to hold him. But I just sat next to his bed and combed my fingers through his hair and told him how much I loved him.

But I didn't break down. Courage and strength had risen up from somewhere deep inside, and I was able to stay fairly calm. The interview I had watched of Lisa Beamer kept running over and over in my mind. The neurosurgeon eventually arrived. She was a woman in her early 40's. She had come from home and was wearing street clothes. By the time the surgeon had come to speak with us, she'd already taken a look at the scans and had seen Daniel's chart. Essentially, this is the gist of her conversation with us: Spinal cord tumors are very rare - not many doctors can say they have a lot of experience operating on them. I believe this tumor could be an ependymoma. Ependymomas are relatively easy to remove - they come out almost in one piece, kind of like a noodle. We need to do a biopsy first. I will remove a piece of the tumor and a flash pathology will determine what kind of tumor it is. If the tumor is an ependymoma, then I will continue with the surgery and try to remove it." She seemed confident, even cocky, and cheerful. She didn't wish to talk about anything beyond the impending biopsy and surgery, so we had very little to go on in terms of how this disease is managed, the survival rates, whether chemo and/or radiation would be recommended, etc...By this time, it was very late, around midnight. Daniel was asleep. We were advised to get some sleep. The toughest, most incredible journey of our lives was just beginning.

The Day My Heart was Broken - Part One

My husband and I have 3 children, but the one in the middle has a very special story - a story that has deeply affected and bled into the lives of everyone in our family, extended family, and our close friends. Through Daniel's young life, he has experienced some very "close calls." When he was 4, Daniel came extremely close to being hit by a fast-moving car. When he was about 5, he was playing in his room. There was a light fixture on the ceiling with no light bulb in it at the time because the bulb had just burned out. He was playing with a tent pole from a little play tent he and Elijah had gotten as a gift. He managed to stick the metal pole directly into the light fixture. I was downstairs, and heard a sound like an electrical surge. In absolute panic, I ran upstairs, and Daniel was crying from fright. There was a burned, smoking circle on the carpet from a bolt of electricity. The pole spanned EXACTLY the distance from the fixture to the ground. So the electricity flow bypassed little Daniel and went directly into the ground via the pole and not Daniel's body. It's as if, to my understanding, God had specifically protected Daniel, while at the same time, the enemy had specifically tried to destroy him.

When Daniel was 6, he started complaining of pain in the back of his neck. The pain and the complaining always came in the morning after he had woken up from sleep. Neither Wes nor I thought much of it at first. But day by day, the pain was getting worse and more frequent. After a few weeks, it started bothering him during the day and in the middle of the night. So, we took him to his pediatrician, fully thinking he had strained it somehow. His doctor ordered an x-ray, which did reveal a slight curvature in that part of the spine, but no apparent injury or anything unusual. Essentially, he told us that there was nothing wrong besides possibly a strain, and to keep giving him Ibuprofen - hopefully, the pain would resolve itself. But after a few days, the pain had only grown worse. So, we called his doctor back. The doctor didn't take us too seriously. But Wes and I were more concerned than ever, and Wes demanded, in tears of frustration, that we be given a referral to a specialist.

We got the referral to see a spine specialist in Tualatin - Dr. Timothy Keenan, on Friday, October 19th, 2001, . I brought Daniel to the appointment by myself. It was a beautiful, sunny fall day - driving up together, Daniel and I were enjoying the day, listening to music and feeling pretty carefree. The specialist examined Daniel and couldn't see anything out of the ordinary. But because Daniel was experiencing so much pain, he decided to order an MRI. He told me not to worry - the purpose of the MRI was just to rule out anything serious.

The doctor let me use the phone so I could call Wes and let him know what was going on. Wes said he'd meet me at the hospital after he got off work. At Emmanuel Hospital, the MRI staff told me Daniel would have to be anesthetized, but the MRI would take only about 45 minutes. Daniel was given a regular hospital room, so I was told to wait in there, and they'd call me after he'd woken up from the anesthesia.

Wes arrived quite awhile after I'd said goodbye to Daniel in the MRI department. When he walked in, I told him that I was a bit confused because I thought they had told me the MRI would take just a short while. And yet, Daniel had been gone for at least 2 hours. We sat there together and watched TV, since there was nothing else to do. During one of the shows, we saw an interview of Lisa Beamer, the wife of Todd Beamer. This was right after 9-11, and he was one of the passengers who took down the terrorists in the plane that eventually crashed in a Pennsylvania field. Lisa Beamer told her story of shock and grief upon hearing that her husband had died. Yet, I was so struck by her dignity. The interviewer asked her how she was handling everything. She said with confidence and poise, that her relationship with Jesus was sustaining her and bringing her comfort. She expressed how thankful she was that Todd had a saving relationship with Jesus, that he was in heaven, and how excited she was to meet him there one day. I bring this up, because, while listening to this interview, my mind, for the first time entertained the notion that something might be very wrong with Daniel. I hadn't even allowed myself to think that thought, until this point. But her testimony in the midst of these new, frightening thoughts, gave me tremendous courage. I remember vividly thinking to myself that if something did happen to Daniel, I had the same God Lisa Beamer had - the same God who brings comfort and peace and hope. As he sustained her, he would sustain me, no matter what we might have to face or endure.