There were several highlights in our stay at Shriners. Some of the them included developing friendships with the other patients and their families. One family came in about halfway through our stay. Their 7 year old son, David, needed traction to try and correct scoliosis due to a bone disease. Daniel was able to befriend David during this time, and sympathize with him like no one else could. They would often hang out, play board games and video games together. And Wes and I related our experiences and offered our advice to David's mom and dad. Alex was another special patient to us. Complications had arisen from a major surgery to his spine, and he developed an infection and a spinal fluid leak. He was required to lie in bed for days at a time. We tried keeping him company and distracting him during those long days in bed. Myrissa also came in for halo traction. She and Daniel became friends and spent a great deal of time in the school room together. A girl named Riley came in during our stay. She had bone cancer. We got to know her and her family pretty well during our time in the hospital together. Riley is now in heaven.
The nurses were special to us. We soon became familiar with the work shifts of all the different nurses and when to expect them. They were great company, and were so friendly and kind. Elijah had a few nurses wrapped around his finger, and they would give him pop and other treats any time he wanted. As a result, we all had to work on bringing Elijah's weight back down after our hospital stay was over! :) Brooke was in her last year of high school at the time and had already decided she would major in nursing. Many of the nurses encouraged her and gave her great advice pertaining to college and a career in nursing. And of course, all the nurses became intimately familiar with Daniel's needs and preferences, and were always there to make him comfortable, keep him entertained and happy. We love them all.
One of the really big highlights for Daniel and for our whole family, was when Daniel's youth pastor brought all the kids up for youth group meetings in the hospital lobby. This happened twice. Daniel was able to see all his friends again and participate in the youth group meetings he loved and missed so much. At the end, the kids would gather around Daniel and have an extended time of prayer for him. These visits broke up the monotony of being cloistered in the hospital. Many other people came by to see us. We had visitors several times a week, and many brought us meals. It was so nice to get a break from cafeteria food!
One day, close to the end of Daniel's stay, the doctors had finally been able to rig up a traction wheelchair so Daniel could leave the hospital for several hours! We got on a bus and explored
downtown Portland as a family. I can't imagine how good it felt for Daniel to get out of that hospital. It was Valentines Day. We ordered some fancy desserts at one of our favorite restaurants, Jakes Grill. We got ready to pay our bill, and the waiter said that one of the tables next to us had picked up the tab - because they were so blessed to see Daniel, in his situation, looking so happy and having such a good time, and they wanted to bless us in return.
About a week after Valentines Day, a surgery was scheduled for Daniel. The halo traction had been remarkably successful at correcting Daniel's spinal deformity to a great degree, but the next step in the whole process would certainly be the hardest.
to be continued.....
Friday, February 17, 2012
Friday, February 10, 2012
Shriners Hospital/ Halo Traction Part One
The next major event in Daniel's story took place in January 2010. Prior to this time, we had been noticing a progression of scoliosis caused by all the spine/spinal cord surgeries. Daniel's scoliosis started out fairly mild but eventually became very severe, and would only continue to worsen until his internal organs were compromised. Daniel's doctors at Doernbecher referred us to a surgeon at Shriners Hospital. After several appointments, Dr. Krajbech at Shriners mapped out a course for repairing the scoliosis, but it would require at least a 2 month stay in Shriners Hospital as an inpatient. Daniel would not be able to leave the hospital. For 2 months.
So, we started making the mental and physical preparations for this huge transition, by looking for a place to stay. Our niece's in-laws just happened to have an empty condo for sale about a 3-minute drive from Shriners, and they very generously offered to let us use it for the duration of Daniel's hospital stay! Since the condo was empty, we would need to find our own furnishings, dishes, etc. My sweet facebook friend, Erika, took this task upon herself by asking members of her church to help supply what we needed. And they did - we were given several pieces of furniture, dishes, a vaccuum, and many other things we hadn't even thought we would need, to make our stay more comfortable. I am still so thankful for the people who lovingly sacrificed to meet our needs, without even being asked. God is so good.
Once we got moved into the condo, Daniel was admitted into Shriners. This took place on January 4th. A surgery was scheduled on January 5th for a halo-placement. This is a heavy, circular piece of metal that has screws all around it that are screwed into the skull. Yes, it sounds like a torture device and looks like one too. The surgery went well, but when Daniel started waking up and we went in to see him, we were taken aback. It looked so painful. Fortunately, the pain was well managed by medication the first few weeks after surgery, and eventually Daniel's skull got used to the device, and it no longer gave him pain. Once the halo was put in, Daniel had to be constantly hooked up to weights. The weights were attached to a pulley system that pulled on Daniel's halo from high above his head. Halo traction, if successful, will eventually straighten out the spine. At first, about 10 pounds of weight were added to the halo, but eventually more and more weight was added until he had about 35 pounds pulling on the halo attached to his skull. Daniel had to be hooked up to the weights at ALL times, even while sleeping, and while taking a bath! A physical therapist at Shriners had invented a portable halo traction walker with wheels that allowed halo patients to walk around while still hooked up to traction.
The whole traction process was very cumbersome and tedious at first, but we all got used to it. Once Daniel recovered from the initial surgery, we settled into a routine. Wes stayed in McMinnville during the weekdays and traveled up on the weekends. Our other two kids went back and forth between staying in McMinnville, and staying in Portland. And I stayed with Daniel 24/7, right in his hospital room :). Shriners is connected by a labryinth of passageways to OHSU and Doernbecher Hospitals. Once we were taught how to get from place to place (it was kind of like a maze), Daniel and I did a lot of exploring. Everyday, we walked to the other hospitals, with Daniel hooked up to his traction "walker". He eventually got used to the walker with wheels, and became somewhat of a daredevil. The nurses were constantly telling him to slow down! One time he was strolling too fast and tipped over, his heavily weighted haloed head smacking the ground. That was scary for both of us - and it only happened once for him to learn his lesson!
Many children at Shriners are required to stay for extended periods of time, so there are school teachers who work at Shriners full-time to help the children keep up with their studies during their stays. The school room has computers, lots of books and LOTS of games. Because I have home schooled Daniel all his life, I brought all his school books from home and continued to teach him myself. We didn't venture into the school room much at first. But the teachers there came down to our room over the first several weeks and we started to get to know them. Eric and Glenda are their names. They eventually convinced us to spend more time in the school room, playing games and reading books. By the end of our stay, Eric and Glenda were helping with Daniel's school (and Elijah's too), and Daniel was spending much of the weekdays down in the school room with them. I can't even begin to tell you what a blessing Eric and Glenda were to us. They both know Jesus intimately (which was a HUGE blessing to us), and they were very bright lights in what could have been a dark situation for us. They made our stay there so much lighter and even pleasant! They taught us to play many fun games, they made us laugh and were in-house friends, constantly there for us. To this day, I love them both so dearly. Eric, who was 31 at the time, in particular, developed a special bond with Daniel. They became fast friends and bosom buddies, and we have had Eric over to our house several times since we left the hospital. My boys pretty much want to be just like Eric when they grow up :).
to be continued (soon, I promise).....
So, we started making the mental and physical preparations for this huge transition, by looking for a place to stay. Our niece's in-laws just happened to have an empty condo for sale about a 3-minute drive from Shriners, and they very generously offered to let us use it for the duration of Daniel's hospital stay! Since the condo was empty, we would need to find our own furnishings, dishes, etc. My sweet facebook friend, Erika, took this task upon herself by asking members of her church to help supply what we needed. And they did - we were given several pieces of furniture, dishes, a vaccuum, and many other things we hadn't even thought we would need, to make our stay more comfortable. I am still so thankful for the people who lovingly sacrificed to meet our needs, without even being asked. God is so good.
Once we got moved into the condo, Daniel was admitted into Shriners. This took place on January 4th. A surgery was scheduled on January 5th for a halo-placement. This is a heavy, circular piece of metal that has screws all around it that are screwed into the skull. Yes, it sounds like a torture device and looks like one too. The surgery went well, but when Daniel started waking up and we went in to see him, we were taken aback. It looked so painful. Fortunately, the pain was well managed by medication the first few weeks after surgery, and eventually Daniel's skull got used to the device, and it no longer gave him pain. Once the halo was put in, Daniel had to be constantly hooked up to weights. The weights were attached to a pulley system that pulled on Daniel's halo from high above his head. Halo traction, if successful, will eventually straighten out the spine. At first, about 10 pounds of weight were added to the halo, but eventually more and more weight was added until he had about 35 pounds pulling on the halo attached to his skull. Daniel had to be hooked up to the weights at ALL times, even while sleeping, and while taking a bath! A physical therapist at Shriners had invented a portable halo traction walker with wheels that allowed halo patients to walk around while still hooked up to traction.
The whole traction process was very cumbersome and tedious at first, but we all got used to it. Once Daniel recovered from the initial surgery, we settled into a routine. Wes stayed in McMinnville during the weekdays and traveled up on the weekends. Our other two kids went back and forth between staying in McMinnville, and staying in Portland. And I stayed with Daniel 24/7, right in his hospital room :). Shriners is connected by a labryinth of passageways to OHSU and Doernbecher Hospitals. Once we were taught how to get from place to place (it was kind of like a maze), Daniel and I did a lot of exploring. Everyday, we walked to the other hospitals, with Daniel hooked up to his traction "walker". He eventually got used to the walker with wheels, and became somewhat of a daredevil. The nurses were constantly telling him to slow down! One time he was strolling too fast and tipped over, his heavily weighted haloed head smacking the ground. That was scary for both of us - and it only happened once for him to learn his lesson!
Many children at Shriners are required to stay for extended periods of time, so there are school teachers who work at Shriners full-time to help the children keep up with their studies during their stays. The school room has computers, lots of books and LOTS of games. Because I have home schooled Daniel all his life, I brought all his school books from home and continued to teach him myself. We didn't venture into the school room much at first. But the teachers there came down to our room over the first several weeks and we started to get to know them. Eric and Glenda are their names. They eventually convinced us to spend more time in the school room, playing games and reading books. By the end of our stay, Eric and Glenda were helping with Daniel's school (and Elijah's too), and Daniel was spending much of the weekdays down in the school room with them. I can't even begin to tell you what a blessing Eric and Glenda were to us. They both know Jesus intimately (which was a HUGE blessing to us), and they were very bright lights in what could have been a dark situation for us. They made our stay there so much lighter and even pleasant! They taught us to play many fun games, they made us laugh and were in-house friends, constantly there for us. To this day, I love them both so dearly. Eric, who was 31 at the time, in particular, developed a special bond with Daniel. They became fast friends and bosom buddies, and we have had Eric over to our house several times since we left the hospital. My boys pretty much want to be just like Eric when they grow up :).
to be continued (soon, I promise).....
Friday, October 8, 2010
Daniel's 2007 Tumor Surgery - Part Two
In the weeks following Daniel's MRI, I carried a heavy heart everywhere I went. Dr. Selden made it clear that the surgery on Dec. 31st could result in a loss of motor function and coordination, and even temporary or permanent paralysis. I had to continually fight off the temptation to fear the worst. Nevertheless, Christmas was approaching and we wanted to give Daniel a chance to have some fun before his impending surgery and recovery. Daniel's spirits didn't seem to be affected much by the news. He continued to let mom and dad carry the heavy burdens, while he remained almost as carefree as ever.
A few days before Christmas we took a trip to one of our favorite family destinations - the Metolius River, near Bend, OR. We rented 2 cabins at the Metolius River Lodges - within sight and sound of the rushing river, and surrounded on all sides by Ponderosa pines. The cabins had no telephones, TV's, or cell service. We cheated and brought with us a TV/VCR and all the Christmas movies we owned! A cute general store located next to the cabins gave the kids continual access to a large array of treats and drinks. One day we went tubing at the Hoodoo ski area, about 20 minutes away from where we stayed. Daniel, Brooke and Elijah plunged down the hills on intertubes, over and over again, having the time of their lives.
The kids enjoyed the independence of having their own cabin, but most of our time was spent all together. One evening, we took a walk on a well-traveled path around the river, and it started to snow. Large snow flakes landed on our cheeks and noses. By the time our walk was finished, snow had coated the trees and the ground. It was a beautiful and awe-inspiring sight, and a gift from God to us. Falling snow brings such a magical peace, and that night we all felt it.
The trip to Metolius gave our minds and hearts a much-needed reprieve. On Dec. 30th, we drove to Vancouver. A party to celebrate Wes's parents' 50th wedding anniversary was held that day. We spent the night at Wes's parents' house. We woke up very early the morning of December 31st. Tired from lack of sleep and an anxious mind, I sat pensively in the car as Wes drove to the hospital. A Keith Green CD was playing, and the catchy, fun song "He'll Take Care of the Rest" came on - a song I'd heard hundreds of times before. But this time, the words took on a whole new meaning for me. The lyrics speak of being faced with impossible obstacles. It uses the examples of Moses and Noah and the situations God allowed in their lives that demanded a tremendous amount of hope and courage and trust. "You just keep doing your best, and pray that it's blessed, and Jesus takes care of the rest." So simple, and yet it was what I needed to hear right then. The circumstances surrounding Daniel's surgery were completely out of my control. I had tried to do my very best for Daniel and for his health - and I had prayed and prayed. And Jesus would take care of the rest. That was the truth - so simple! God had lovingly carried my son all the way to this point, and He wasn't going to stop now.
We arrived at the hospital, and Daniel was prepped for surgery. Then the surgeon, dressed in his surgical scrubs, came in to speak with us. And then we gave Daniel good-bye kisses and hugs, before making our way, once again, to another waiting area. This time, our friends and family were at home praying for us - and we felt them with us in spirit. One family we had met through Wes's parents came to the hospital and stayed with us the entire time. They were so sweet and kind and we enjoyed their company.
We received occasional updates throughout the surgery. The updates sounded generally positive - but we really wouldn't know anything until it was over. The surgery lasted about 5 hours, and then Dr. Selden came out to speak with us. The first thing I've always done is look at the surgeon's countenance to see if he seems happy or sad. He seemed happy. I breathed a sigh of relief. He sat down opposite us and told us that the surgery had gone very well. He said he had been aggressive in trying to remove as much tumor as possible - his reasons being that Daniel's spinal cord can not continue to be opened up over and over again - he wanted to make sure he took out as much of the tumor as he could while he had the chance. He said the electrical monitoring alarm went off at one point, and this prevented him from going any further. Daniel was waking up, and was moving his fingers and toes. Overall, Dr. Selden thought the surgery had been very successful. He told us to wait in ICU and they would be wheeling Daniel in soon.
Once Daniel was brought to ICU, Dr. Selden examined him again. He could clearly see now that Daniel's left arm had been affected by the surgery. During his surgery in New York, Daniel's RIGHT arm had been affected, but the function eventually returned to an almost normal state. So we had hope that the function in his left arm would also return. Although the movement in his left arm did improve greatly over the following weeks and months, still to this day, he has issues. His left arm twitches all the time, and he has trouble grasping things with his left hand. The one thing he misses the most is being able to play the piano - something he really enjoyed before the surgery. But for the most part, the slight disability has hardly hindered him at all. He lives with it like it's a just a normal part of his life.
I don't even need to say how thankful and relieved we were that Daniel came through surgery with no significant nerve loss. The Lord has continually brought him (and us) through so many trials and terrifying experiences, and for this we give Him all the glory.
A few days before Christmas we took a trip to one of our favorite family destinations - the Metolius River, near Bend, OR. We rented 2 cabins at the Metolius River Lodges - within sight and sound of the rushing river, and surrounded on all sides by Ponderosa pines. The cabins had no telephones, TV's, or cell service. We cheated and brought with us a TV/VCR and all the Christmas movies we owned! A cute general store located next to the cabins gave the kids continual access to a large array of treats and drinks. One day we went tubing at the Hoodoo ski area, about 20 minutes away from where we stayed. Daniel, Brooke and Elijah plunged down the hills on intertubes, over and over again, having the time of their lives.
The kids enjoyed the independence of having their own cabin, but most of our time was spent all together. One evening, we took a walk on a well-traveled path around the river, and it started to snow. Large snow flakes landed on our cheeks and noses. By the time our walk was finished, snow had coated the trees and the ground. It was a beautiful and awe-inspiring sight, and a gift from God to us. Falling snow brings such a magical peace, and that night we all felt it.
The trip to Metolius gave our minds and hearts a much-needed reprieve. On Dec. 30th, we drove to Vancouver. A party to celebrate Wes's parents' 50th wedding anniversary was held that day. We spent the night at Wes's parents' house. We woke up very early the morning of December 31st. Tired from lack of sleep and an anxious mind, I sat pensively in the car as Wes drove to the hospital. A Keith Green CD was playing, and the catchy, fun song "He'll Take Care of the Rest" came on - a song I'd heard hundreds of times before. But this time, the words took on a whole new meaning for me. The lyrics speak of being faced with impossible obstacles. It uses the examples of Moses and Noah and the situations God allowed in their lives that demanded a tremendous amount of hope and courage and trust. "You just keep doing your best, and pray that it's blessed, and Jesus takes care of the rest." So simple, and yet it was what I needed to hear right then. The circumstances surrounding Daniel's surgery were completely out of my control. I had tried to do my very best for Daniel and for his health - and I had prayed and prayed. And Jesus would take care of the rest. That was the truth - so simple! God had lovingly carried my son all the way to this point, and He wasn't going to stop now.
We arrived at the hospital, and Daniel was prepped for surgery. Then the surgeon, dressed in his surgical scrubs, came in to speak with us. And then we gave Daniel good-bye kisses and hugs, before making our way, once again, to another waiting area. This time, our friends and family were at home praying for us - and we felt them with us in spirit. One family we had met through Wes's parents came to the hospital and stayed with us the entire time. They were so sweet and kind and we enjoyed their company.
We received occasional updates throughout the surgery. The updates sounded generally positive - but we really wouldn't know anything until it was over. The surgery lasted about 5 hours, and then Dr. Selden came out to speak with us. The first thing I've always done is look at the surgeon's countenance to see if he seems happy or sad. He seemed happy. I breathed a sigh of relief. He sat down opposite us and told us that the surgery had gone very well. He said he had been aggressive in trying to remove as much tumor as possible - his reasons being that Daniel's spinal cord can not continue to be opened up over and over again - he wanted to make sure he took out as much of the tumor as he could while he had the chance. He said the electrical monitoring alarm went off at one point, and this prevented him from going any further. Daniel was waking up, and was moving his fingers and toes. Overall, Dr. Selden thought the surgery had been very successful. He told us to wait in ICU and they would be wheeling Daniel in soon.
Once Daniel was brought to ICU, Dr. Selden examined him again. He could clearly see now that Daniel's left arm had been affected by the surgery. During his surgery in New York, Daniel's RIGHT arm had been affected, but the function eventually returned to an almost normal state. So we had hope that the function in his left arm would also return. Although the movement in his left arm did improve greatly over the following weeks and months, still to this day, he has issues. His left arm twitches all the time, and he has trouble grasping things with his left hand. The one thing he misses the most is being able to play the piano - something he really enjoyed before the surgery. But for the most part, the slight disability has hardly hindered him at all. He lives with it like it's a just a normal part of his life.
I don't even need to say how thankful and relieved we were that Daniel came through surgery with no significant nerve loss. The Lord has continually brought him (and us) through so many trials and terrifying experiences, and for this we give Him all the glory.
Tuesday, September 28, 2010
Daniel's 2007 Tumor Surgery - Part One
Daniel finished his chemotherapy regimen in early 2005. In 2005, we started noticing that Daniel's growth had slowed down considerably. His younger brother had passed him up in height. We took Daniel to an endocrinologist, a doctor who specializes in hormone disorders. The endocrinologist performed lots of tests on Daniel, but essentially there was nothing that could be done for him. Human growth hormone therapy was not an option, because this therapy potentially promotes tumor growth. Another therapy would have blocked the absorption of estrogen, which strengthens bones. Daniel's bones, because of the steroid use, were already too brittle. We were advised to just wait and hope for the best. In 2005, Daniel's growth was on the 5% curve. Since then, it has dropped down even lower and is not even on the curve. This issue has been a difficult one for us to deal with. We remind ourselves often that God must have plans for Daniel that are different than ours. Bigger. God is preparing Daniel to be a giant on the inside. Daniel's trials have given him spiritual depth and a wisdom and maturity of someone twice his age. We are blessed daily by the amazing character we see in him.
To rewind a little, Daniel had an MRI in mid-December 2007. I've mentioned before that MRI days are never fun, at all. But this day, I felt strangely calm and peaceful. The butterflies were not there like they usually are. The MRI was followed as usual by a consultation with Daniel's oncologist at Doernbecher. We sat in a tiny examination room - Wes, Daniel, and I, for about 45 minutes waiting for the doctor to come in. Our other children had come with us, but were watching a movie in the waiting room. We got so bored, that we started singing songs in that room. I'm sure the whole floor could hear us singing. Finally, the doctor walked in with a neurosurgeon. He proceeded to examine Daniel. His examination was more probing than usual. When he was finished, he looked at the neurosurgeon and said, "Well, he LOOKS okay." He started talking to us about the MRI almost immediately after examining Daniel, but his previous comment had already tipped me off. I knew that something was amiss.
He told us that the MRI revealed tumor growth in the cervical (neck) area. He called the neurosurgeon on the phone before meeting with us, and the neurosurgeon (Dr. Nathan Selden) had decided to come over. They discussed the findings before meeting with us, and had come to a consensus that another surgery was needed to remove this growth. Wes and I took the news in stride, without reacting strongly. We'd been down this road before, and although we were very disappointed, we still had confidence that God would bring Daniel through, once again. This time, Daniel was 12 and not 7 - a big difference. A child's level of understanding is much greater at 12 years old, but Daniel remained incredibly calm.
The first thing we did when we got home was send an email to Dr. George Jallo. Dr. Jallo had assisted Dr. Kothbauer during Daniel's tumor resection surgery in New York and had an equally high level of experience and expertise. Dr. Kothbauer had made the decision a few years earlier to take his neurosurgical expertise to Europe where it was very much needed, and he moved to Switzerland. Dr. Jallo had knowledge of Dr. Selden at Doernbecher. He placed a great deal of confidence in Dr. Selden's ability to perform a successful tumor resection surgery in the spinal cord. Hospitals around the country had made great strides in this field since Daniel's last surgery in 2002 - and so he advised us to have the surgery done in Portland this time.
We followed his advice, and made the decision to go with Dr. Selden. We met with Dr. Selden and he gave us some disconcerting news - each time the spinal cord is opened up, there is an exponentially greater risk for neurological damage, because the surgeon must cut through scar tissue from previous surgeries. This surgery would be less extensive than the one in New York, but at the same time, much more risky. He told us that the chances for paralysis, even death, were higher. We left the appointment feeling desperately aware of how much we needed to release our fears for Daniel's life and well-being, and place them in God's hands. The surgery was scheduled for December 31st, 2007, New Years Eve. So we made the decision to try and have the most wonderful Christmas possible before the big day arrived.
To rewind a little, Daniel had an MRI in mid-December 2007. I've mentioned before that MRI days are never fun, at all. But this day, I felt strangely calm and peaceful. The butterflies were not there like they usually are. The MRI was followed as usual by a consultation with Daniel's oncologist at Doernbecher. We sat in a tiny examination room - Wes, Daniel, and I, for about 45 minutes waiting for the doctor to come in. Our other children had come with us, but were watching a movie in the waiting room. We got so bored, that we started singing songs in that room. I'm sure the whole floor could hear us singing. Finally, the doctor walked in with a neurosurgeon. He proceeded to examine Daniel. His examination was more probing than usual. When he was finished, he looked at the neurosurgeon and said, "Well, he LOOKS okay." He started talking to us about the MRI almost immediately after examining Daniel, but his previous comment had already tipped me off. I knew that something was amiss.
He told us that the MRI revealed tumor growth in the cervical (neck) area. He called the neurosurgeon on the phone before meeting with us, and the neurosurgeon (Dr. Nathan Selden) had decided to come over. They discussed the findings before meeting with us, and had come to a consensus that another surgery was needed to remove this growth. Wes and I took the news in stride, without reacting strongly. We'd been down this road before, and although we were very disappointed, we still had confidence that God would bring Daniel through, once again. This time, Daniel was 12 and not 7 - a big difference. A child's level of understanding is much greater at 12 years old, but Daniel remained incredibly calm.
The first thing we did when we got home was send an email to Dr. George Jallo. Dr. Jallo had assisted Dr. Kothbauer during Daniel's tumor resection surgery in New York and had an equally high level of experience and expertise. Dr. Kothbauer had made the decision a few years earlier to take his neurosurgical expertise to Europe where it was very much needed, and he moved to Switzerland. Dr. Jallo had knowledge of Dr. Selden at Doernbecher. He placed a great deal of confidence in Dr. Selden's ability to perform a successful tumor resection surgery in the spinal cord. Hospitals around the country had made great strides in this field since Daniel's last surgery in 2002 - and so he advised us to have the surgery done in Portland this time.
We followed his advice, and made the decision to go with Dr. Selden. We met with Dr. Selden and he gave us some disconcerting news - each time the spinal cord is opened up, there is an exponentially greater risk for neurological damage, because the surgeon must cut through scar tissue from previous surgeries. This surgery would be less extensive than the one in New York, but at the same time, much more risky. He told us that the chances for paralysis, even death, were higher. We left the appointment feeling desperately aware of how much we needed to release our fears for Daniel's life and well-being, and place them in God's hands. The surgery was scheduled for December 31st, 2007, New Years Eve. So we made the decision to try and have the most wonderful Christmas possible before the big day arrived.
Friday, September 17, 2010
Chemotherapy/God's Protection and Provision
An MRI was performed right after Daniel's shunt placement surgery - his doctors needed answers as to why his hydrocephalus came on so suddenly. Daniel's original tumor began just below the brain stem and spanned all the way to the middle of his back. The portion of the tumor just below the brain stem was very bulky through the neck area and thinned down from there. Dr. Kothbauer removed the tumor to a great extent, but many of the tumor fragments remaining were in the neck (or cervical) area. The MRI performed after the shunt surgery showed that something was going on in that area of the spinal cord. It was difficult for the doctors and radiologist to determine what they were seeing. But the spinal cord in the neck area clearly was quite a bit larger and bulkier as compared to the previous MRI. Although a consensus was never made as to what had caused the hydrocephalus, there WAS a consensus by Daniel's doctors, including Dr. Kothbauer in New York, recommending chemotherapy at this point.
We started meeting regularly with Daniel's oncologist. The chemotherapy regimen recommended for Daniel was one established for slow-growing spinal cord and brain tumors. There were 4 or 5 drugs involved, and the dosages were relatively mild. The hardest part about it was the amount of time involved. It would take at least 15 months to complete the entire regimen, although when all was said and done, it took about 18 months. So we settled into a whole new routine - one involving regular trips to Doernbecher Hospital. During the course of the chemotherapy, Daniel went through a bout of adrenal failure, not related to the chemo directly, but to past steroid use, which caused him to throw up most of his food for about 2 weeks. He also needed sporadic red blood cell and platelet transfusions because of the chemo. However, the chemo drugs made him only mildly nauseous, and his hair didn't fall out. Each MRI performed during this time revealed shrinkage in the cervical area of the spinal cord - we were very thankful.
Daniel and I made almost weekly trips to Doernbecher in Portland. I tried to make each trip a fun experience for Daniel. We ate at his favorite restaurants and made frequent visits to Toys-R-Us. I look back on this time with fondness, and enjoyed all the time I got to spend with Daniel. He was so sweet and patient through it all and a blessing to everyone he came in contact with at the hospital.
One hot, summer day in 2004, I had taken my kids to a swimming area at a local river. On the way home, we stopped at a Dairy Queen drive-thru for some ice cream. In the drive-thru line, I asked Daniel what he would like. He responded, but it sounded like his words were coming out backwards and I could not make out what he was trying to tell me. We got through the line, and I parked the car. I asked Daniel what was wrong. He said, "I can't get my words to come out right." Thinking maybe he had tired himself out swimming, I told him to lay his head back and rest. But about halfway between Dairy Queen and home, I realized something was wrong. He tried talking but his words were making no sense. And he was clearly frightened. I called Wes and told him what was going on and that I was taking him to the Emergency Room.
Daniel came into the ER hardly able to talk, but within about 20 minutes or so, he regained his ability to speak. Later that day, we brought him up to Doernbecher and he was admitted. The doctors there determined that he had had a TIA, or mild stroke. Many tests were performed, including an EKG. Nothing had been lost during the stroke. He was very fortunate. Daniel had no more serious episodes after this. Another very scary event in Daniel's journey - yet he once again made it through without any permanent side-effects or damage. Praise the Lord.
Daniel eventually made it through chemo. It was a long 18 months for the entire family. We continued to home school. By the time Daniel started chemo, I was a pretty experienced and seasoned home school mom. I can not imagine how difficult these 18 months would have been on our family if all my kids had been enrolled in a regular school. Home school gave us tremendous flexibility and also allowed our whole family to focus our energies on taking care of Daniel's needs. Some days, all the kids did their school in the car on the long drives up to the hospital, Sometimes Brooke and Elijah did school at Grandma's house while Daniel did his at the hospital. But in some way or another, school always got done. And we were able to stick together as a family, while many families in that situation would have been forced to "divide and conquer." While our family and our children stayed close and strong, there were relational struggles. Our marriage took the hardest hit, and I will discuss that in a later post. But God is our Redeemer - He is in the business of Redeeming that which is broken and damaged. He preserved our relationship as a family, and He also redeemed our marriage from a deep, dark pit.
We started meeting regularly with Daniel's oncologist. The chemotherapy regimen recommended for Daniel was one established for slow-growing spinal cord and brain tumors. There were 4 or 5 drugs involved, and the dosages were relatively mild. The hardest part about it was the amount of time involved. It would take at least 15 months to complete the entire regimen, although when all was said and done, it took about 18 months. So we settled into a whole new routine - one involving regular trips to Doernbecher Hospital. During the course of the chemotherapy, Daniel went through a bout of adrenal failure, not related to the chemo directly, but to past steroid use, which caused him to throw up most of his food for about 2 weeks. He also needed sporadic red blood cell and platelet transfusions because of the chemo. However, the chemo drugs made him only mildly nauseous, and his hair didn't fall out. Each MRI performed during this time revealed shrinkage in the cervical area of the spinal cord - we were very thankful.
Daniel and I made almost weekly trips to Doernbecher in Portland. I tried to make each trip a fun experience for Daniel. We ate at his favorite restaurants and made frequent visits to Toys-R-Us. I look back on this time with fondness, and enjoyed all the time I got to spend with Daniel. He was so sweet and patient through it all and a blessing to everyone he came in contact with at the hospital.
One hot, summer day in 2004, I had taken my kids to a swimming area at a local river. On the way home, we stopped at a Dairy Queen drive-thru for some ice cream. In the drive-thru line, I asked Daniel what he would like. He responded, but it sounded like his words were coming out backwards and I could not make out what he was trying to tell me. We got through the line, and I parked the car. I asked Daniel what was wrong. He said, "I can't get my words to come out right." Thinking maybe he had tired himself out swimming, I told him to lay his head back and rest. But about halfway between Dairy Queen and home, I realized something was wrong. He tried talking but his words were making no sense. And he was clearly frightened. I called Wes and told him what was going on and that I was taking him to the Emergency Room.
Daniel came into the ER hardly able to talk, but within about 20 minutes or so, he regained his ability to speak. Later that day, we brought him up to Doernbecher and he was admitted. The doctors there determined that he had had a TIA, or mild stroke. Many tests were performed, including an EKG. Nothing had been lost during the stroke. He was very fortunate. Daniel had no more serious episodes after this. Another very scary event in Daniel's journey - yet he once again made it through without any permanent side-effects or damage. Praise the Lord.
Daniel eventually made it through chemo. It was a long 18 months for the entire family. We continued to home school. By the time Daniel started chemo, I was a pretty experienced and seasoned home school mom. I can not imagine how difficult these 18 months would have been on our family if all my kids had been enrolled in a regular school. Home school gave us tremendous flexibility and also allowed our whole family to focus our energies on taking care of Daniel's needs. Some days, all the kids did their school in the car on the long drives up to the hospital, Sometimes Brooke and Elijah did school at Grandma's house while Daniel did his at the hospital. But in some way or another, school always got done. And we were able to stick together as a family, while many families in that situation would have been forced to "divide and conquer." While our family and our children stayed close and strong, there were relational struggles. Our marriage took the hardest hit, and I will discuss that in a later post. But God is our Redeemer - He is in the business of Redeeming that which is broken and damaged. He preserved our relationship as a family, and He also redeemed our marriage from a deep, dark pit.
Friday, September 10, 2010
The Scariest Day of My Life
It was Sept. 9th, 2003, and Wes, the kids and I went to Pacific City, on the Oregon Coast. There is a huge sand dune on the beach there that our kids love to climb. Once they get to the top, they will run (or roll) all the way down. Daniel, normally able to keep up with his brother and sister, wasn't acting like himself. He seemed tired and said he didn't think he could climb the sand dune. Later, he complained of having a bad headache. Daniel made it through the day OK, but as soon as we got home, he went to bed.
Early the next morning, I heard Daniel moaning in his bedroom, in obvious pain. He said that his head hurt very bad. I talked with him and tried to comfort him. He had to get up to use the bathroom. As soon as he sat up he said he felt sick to his stomach. Within a minute or so, he was throwing up in the bathroom. By this point in our journey with Daniel, I had enough knowledge to be able to figure out what these symptoms most likely pointed to - hydrocephalus. I called Wes's sister, Karen, the "family" nurse. I told her my concerns and asked her if she thought we should take him into the hospital. She said yes. I called Doernbecher and talked with a nurse, who also agreed that he should be seen. Wes was at work, so I called him and he drove back home to be with us. On the ride up to Doernbecher, Daniel seemed to be in less pain. It is common for a person experiencing symptoms of hydrocephalus to feel some relief when sitting in an upright position.
We were told to bring Daniel to the oncology clinic inside the hospital. Once inside the clinic exam room, Daniel just wanted to lie down. I didn't think this was such a good idea. But being that he was very sleepy (another classic hydrocephalus symptom), we let him lie back on several pillows. A doctor came in (not Daniel's regular oncologist). We expressed our concerns. She said a CT scan would reveal whether or not he had hydrocephalus. A nurse came in to draw some blood, and proceeded to ask Daniel some questions. Daniel was awake - he tried to talk, but his words sounded garbled, and we couldn't make sense out of anything he said. The nurse didn't think much of it, but I knew something was very wrong. I looked her right in the eyes and said in a desperate tone of voice, "This is NOT normal. Something is going on!" She sauntered out to get the doctor. Wes and I were left in the room alone with Daniel for what seemed like an eternity. We tried to encourage Daniel to tell us what was going on, but his words weren't at all intelligible. Then right before the doctor came in, Daniel started screaming - it was the scream of intense suffering. Then, he started fading into unconsciousness. The doctor rushed in, and then Daniel completely lost consciousness. The doctor took his vitals. His heart was still beating, he was still breathing, but he just wasn't there anymore. He had sunk into a coma.
Immediately, everyone on the clinic floor mobilized around Daniel. A gurney was brought in. By this time, I was starting to go into a kind of paralyzing shock. I turned away from everything that was going on. I thought for sure Daniel was dying. Fortunately, Wes was there, and he took over. He told the doctors and nurses everything that had happened that day. He stayed with Daniel every second. Wes followed the doctors all the way into a different part of the hospital, holding Daniel's hand the whole way. I remained back in the clinic.. Eventually, Wes came back for me. He said that they were performing an emergency CT scan. Then we heard from the doctors what we had suspected - Daniel had severe hydrocephalus and was being taken into emergency surgery to have a temporary shunt put in.
I don't remember much between when Daniel was rolled out of clinic, until after the surgery was over. But I do clearly remember walking into the ICU. Daniel had a tube coming out of his head. The tube was connected to a plastic bag, which was already almost full of a yellowish liquid, Daniel's cerebral-spinal fluid. The surgeon came in and told us that Daniel's vital signs were good. They did say, however, that there was a chance some brain damage could have occurred - but we wouldn't know for sure until Daniel woke up. Eventually, Daniel started to regain consciousness. Wes's sister, Karen, had arrived at the hospital and was allowed to come into the room with us. The three of us stood hovering over Daniel as he started to wake up. Daniel looked up at us. Karen spoke up and said, "Hey there Daniel, do you know who this is?" Daniel non-chalantly replied, "Oh, Hi, Aunt Karen." We all smiled. Daniel was the same old Daniel. Thank you, Jesus.
Daniel went in for surgery the very next day, September 11th, to have a permanent shunt put in. He has that shunt still. This event kicked off a series of other events, that I will discuss in a later post.
Early the next morning, I heard Daniel moaning in his bedroom, in obvious pain. He said that his head hurt very bad. I talked with him and tried to comfort him. He had to get up to use the bathroom. As soon as he sat up he said he felt sick to his stomach. Within a minute or so, he was throwing up in the bathroom. By this point in our journey with Daniel, I had enough knowledge to be able to figure out what these symptoms most likely pointed to - hydrocephalus. I called Wes's sister, Karen, the "family" nurse. I told her my concerns and asked her if she thought we should take him into the hospital. She said yes. I called Doernbecher and talked with a nurse, who also agreed that he should be seen. Wes was at work, so I called him and he drove back home to be with us. On the ride up to Doernbecher, Daniel seemed to be in less pain. It is common for a person experiencing symptoms of hydrocephalus to feel some relief when sitting in an upright position.
We were told to bring Daniel to the oncology clinic inside the hospital. Once inside the clinic exam room, Daniel just wanted to lie down. I didn't think this was such a good idea. But being that he was very sleepy (another classic hydrocephalus symptom), we let him lie back on several pillows. A doctor came in (not Daniel's regular oncologist). We expressed our concerns. She said a CT scan would reveal whether or not he had hydrocephalus. A nurse came in to draw some blood, and proceeded to ask Daniel some questions. Daniel was awake - he tried to talk, but his words sounded garbled, and we couldn't make sense out of anything he said. The nurse didn't think much of it, but I knew something was very wrong. I looked her right in the eyes and said in a desperate tone of voice, "This is NOT normal. Something is going on!" She sauntered out to get the doctor. Wes and I were left in the room alone with Daniel for what seemed like an eternity. We tried to encourage Daniel to tell us what was going on, but his words weren't at all intelligible. Then right before the doctor came in, Daniel started screaming - it was the scream of intense suffering. Then, he started fading into unconsciousness. The doctor rushed in, and then Daniel completely lost consciousness. The doctor took his vitals. His heart was still beating, he was still breathing, but he just wasn't there anymore. He had sunk into a coma.
Immediately, everyone on the clinic floor mobilized around Daniel. A gurney was brought in. By this time, I was starting to go into a kind of paralyzing shock. I turned away from everything that was going on. I thought for sure Daniel was dying. Fortunately, Wes was there, and he took over. He told the doctors and nurses everything that had happened that day. He stayed with Daniel every second. Wes followed the doctors all the way into a different part of the hospital, holding Daniel's hand the whole way. I remained back in the clinic.. Eventually, Wes came back for me. He said that they were performing an emergency CT scan. Then we heard from the doctors what we had suspected - Daniel had severe hydrocephalus and was being taken into emergency surgery to have a temporary shunt put in.
I don't remember much between when Daniel was rolled out of clinic, until after the surgery was over. But I do clearly remember walking into the ICU. Daniel had a tube coming out of his head. The tube was connected to a plastic bag, which was already almost full of a yellowish liquid, Daniel's cerebral-spinal fluid. The surgeon came in and told us that Daniel's vital signs were good. They did say, however, that there was a chance some brain damage could have occurred - but we wouldn't know for sure until Daniel woke up. Eventually, Daniel started to regain consciousness. Wes's sister, Karen, had arrived at the hospital and was allowed to come into the room with us. The three of us stood hovering over Daniel as he started to wake up. Daniel looked up at us. Karen spoke up and said, "Hey there Daniel, do you know who this is?" Daniel non-chalantly replied, "Oh, Hi, Aunt Karen." We all smiled. Daniel was the same old Daniel. Thank you, Jesus.
Daniel went in for surgery the very next day, September 11th, to have a permanent shunt put in. He has that shunt still. This event kicked off a series of other events, that I will discuss in a later post.
Sunday, September 5, 2010
The Adventure Begins....Again
Daniel's overall health continued to improve after the surgery in New York, and he lead a very normal life considering all he'd gone through. 6 months after his surgery, he had an MRI. The MRI showed that some droplet pieces of tumor in his lower spinal cord appeared to be growing. The growth was minimal - Daniel's oncologist said he thought we should just continue to monitor it closely and wait. In the summer of 2003, Daniel was playing outside, riding bikes with his brother, Elijah. Wes had just come home for lunch, when Daniel walked into the house saying that he felt very weird, his stomach hurt, and he was having trouble walking. Wes and I looked at one another, obviously concerned. We told him to lie down on the couch. A few minutes later we came in to check on him and asked him to try getting up and walking around. He said, "I can't get up." Puzzled, we asked him why. He said, "My legs won't move." We quickly started to realize that something was very wrong. Daniel started to cry and said, "I don't know what's wrong, but I just can't move them, and I can't feel them either." Panic quickly set in.
Immediately, we sprung into action, carried him to the car, and headed for the emergency room at McMinnville Hospital. The ER staff brought him back to a room as quickly as possible. On the way to the hospital Wes called his sister, Karen, to let her know what was going on so she could mobilize the family to pray. It just so happened that Karen was at Doernbecher Hospital on the children's cancer floor visiting a child who was an inpatient there. It was the child's birthday that day and his parents threw a big party for him at the hospital. Karen said, "I need to let Dr. Nicholsen know what's going on ASAP. I will try to track him down."
By the time we arrived at the hospital, Karen had already tracked down Dr. Nicholsen. Dr. Nicholsen called the ER in McMinnville right after we arrived, and said, "Daniel is having a spinal cord stroke. You need to administer dexamethasone (a powerful steroid that immediately shrinks inflammation) STAT!" Within probably ten minutes of our arrival at the hospital, Daniel had been given a dexamethasone injection. The whole time leading up to this, Daniel was still unable to move his legs. But within minutes after receiving the injection, the feeling and movement in his legs started to return. Eventually, Daniel fully regained the ability to move his legs.
We were so struck by the serious nature of the situation and the way God had provided for Daniel's needs. If the medicine had been injected too late, the paralysis in Daniel's legs could have been permanent. Dr. Nicholsen wanted to see Daniel as soon as possible. We drove up to Doernbecher Hospital later that day, and Daniel was checked in as an inpatient. In the room right next to ours was a 12-year-old girl who was recovering from spinal cord tumor surgery - her second one, after it was discovered that her tumor had regrown. Her name was Maddie, and she was doing well. But her first surgery a few years before had not gone so well - it had left her unable to walk. Eventually with physical therapy, she regained some function in her legs and learned how to walk very short distances. Her most recent surgery (in 2003) was more successful - in large part because the neurosurgeons at Doernbecher had been brought up to speed on the advances and new technology involved in spinal cord tumor removal. It was refreshing to meet this family - the first one we'd met whose child had a spinal cord tumor, and very similar in pathology to Daniel's. We were able to share our experiences together. And when we returned home, we kept in close contact with them and and gave each other mutual support.
Daniel was given extremely high doses of the steroid. He had been on steroids before, be never on doses this high. Dr. Nicholsen wanted him to stay on this medication for several weeks. Once a person has been on high doses of steroids for an extended period of time, his/her adrenal glands begin to shut down. So the medication has to been stepped down in very small increments to give the adrenal glands a chance to start working again. In a short period of time, Daniel was so bloated and fat from the steroids, that he looked freakish. His face was so swollen, that it looked like a balloon about to pop at any moment. Everytime we'd go out in public (and we even went on a camping trip in the San Juans Islands later that summer), people could not help but stare at him. We would even hear people say things like, "Oh my gosh, did you see that kid?" It was extremely difficult for me to deal with- especially since under normal circumstances, Daniel was such an adorable kid. Fortunately, Daniel, being only 8 at the time, was mostly oblivious to the very odd way he looked and the way people stared at him. His normal appearance did return about 3 or 4 months later.
The high doses of steroids during this time are the reason why Daniel's growth has been so severely stunted. Powerful steroids drastically affect bone growth in children - the higher the steroid dose, the more that growth will be affected. Even if we had known this, there really was no other choice. As a parent with a sick child, I learned to be thankful for the little things, and to accept the setbacks. After all, this precious little boy who was not supposed live, was still here for us to hug, kiss and treasure.
Just a few months after this, we had another even scarier episode with Daniel that I will share in my next post.
Immediately, we sprung into action, carried him to the car, and headed for the emergency room at McMinnville Hospital. The ER staff brought him back to a room as quickly as possible. On the way to the hospital Wes called his sister, Karen, to let her know what was going on so she could mobilize the family to pray. It just so happened that Karen was at Doernbecher Hospital on the children's cancer floor visiting a child who was an inpatient there. It was the child's birthday that day and his parents threw a big party for him at the hospital. Karen said, "I need to let Dr. Nicholsen know what's going on ASAP. I will try to track him down."
By the time we arrived at the hospital, Karen had already tracked down Dr. Nicholsen. Dr. Nicholsen called the ER in McMinnville right after we arrived, and said, "Daniel is having a spinal cord stroke. You need to administer dexamethasone (a powerful steroid that immediately shrinks inflammation) STAT!" Within probably ten minutes of our arrival at the hospital, Daniel had been given a dexamethasone injection. The whole time leading up to this, Daniel was still unable to move his legs. But within minutes after receiving the injection, the feeling and movement in his legs started to return. Eventually, Daniel fully regained the ability to move his legs.
We were so struck by the serious nature of the situation and the way God had provided for Daniel's needs. If the medicine had been injected too late, the paralysis in Daniel's legs could have been permanent. Dr. Nicholsen wanted to see Daniel as soon as possible. We drove up to Doernbecher Hospital later that day, and Daniel was checked in as an inpatient. In the room right next to ours was a 12-year-old girl who was recovering from spinal cord tumor surgery - her second one, after it was discovered that her tumor had regrown. Her name was Maddie, and she was doing well. But her first surgery a few years before had not gone so well - it had left her unable to walk. Eventually with physical therapy, she regained some function in her legs and learned how to walk very short distances. Her most recent surgery (in 2003) was more successful - in large part because the neurosurgeons at Doernbecher had been brought up to speed on the advances and new technology involved in spinal cord tumor removal. It was refreshing to meet this family - the first one we'd met whose child had a spinal cord tumor, and very similar in pathology to Daniel's. We were able to share our experiences together. And when we returned home, we kept in close contact with them and and gave each other mutual support.
Daniel was given extremely high doses of the steroid. He had been on steroids before, be never on doses this high. Dr. Nicholsen wanted him to stay on this medication for several weeks. Once a person has been on high doses of steroids for an extended period of time, his/her adrenal glands begin to shut down. So the medication has to been stepped down in very small increments to give the adrenal glands a chance to start working again. In a short period of time, Daniel was so bloated and fat from the steroids, that he looked freakish. His face was so swollen, that it looked like a balloon about to pop at any moment. Everytime we'd go out in public (and we even went on a camping trip in the San Juans Islands later that summer), people could not help but stare at him. We would even hear people say things like, "Oh my gosh, did you see that kid?" It was extremely difficult for me to deal with- especially since under normal circumstances, Daniel was such an adorable kid. Fortunately, Daniel, being only 8 at the time, was mostly oblivious to the very odd way he looked and the way people stared at him. His normal appearance did return about 3 or 4 months later.
The high doses of steroids during this time are the reason why Daniel's growth has been so severely stunted. Powerful steroids drastically affect bone growth in children - the higher the steroid dose, the more that growth will be affected. Even if we had known this, there really was no other choice. As a parent with a sick child, I learned to be thankful for the little things, and to accept the setbacks. After all, this precious little boy who was not supposed live, was still here for us to hug, kiss and treasure.
Just a few months after this, we had another even scarier episode with Daniel that I will share in my next post.
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