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.
Friday, August 6, 2010
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.
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.
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.)
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.)
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."
"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!!)
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!!)
Subscribe to:
Posts (Atom)