Well, today has been a slow day here! We cleaned up around the house, started some laundry,and a family friend from Memphis came to visit for the day. The kids gave him the grand tour of the house, Matt showed him the church, and then we took a drive down to the Delta and out for lunch at a drive-in called Bumpers. After lunch hubby and kiddos played Monopoly Deal with him before he headed home(we love board and card games!)
Sooo, I only got 2 quarts of smooth unsweetened applesauce canned, 4 gallon bags of apple pie filling in the freezer, and a stockpot of apple juice made for later apple-jelly making. The recipe for the apple pie filling can be found here
It's super easy! I've now made 8 of these bags to put in our freezer ;)
I also saved all the peelings and apple cores from making these last 4 bags and will throw them into a pot of water, along with any apples too far gone for sauce, and will make some more apple juice by letting them simmer for several hours. This will also work in a crock pot. I'll then use the apple juice to make apple jelly. This will be a first for me, so I'll let you know how it goes!
Tomorrow's goal: make chocolate waffles for breakfast, make applesauce of the rest of our apple harvest and get it canned, pick the green beans ready in our garden and can if there's enough, and make sure everything's ready for homeschooling year to begin on Monday!
Friday, August 10, 2012
Thursday, August 9, 2012
Transforming the blog
Up until now, this blog has been for me to occasionally post on my walk with the Lord as we journey through my oldest son's diagnosis of brain cancer. My posts were about once or twice a year! I have been posting a lot on FaceBook but have been encouraged to post on a blog instead, so I'm transforming this blog into that :) I'm still going to blog on our journey but that journey now includes moving from Memphis to Cascilla, MS.
We've gone from BIG, BIG city (everything we need within 5 mins of our apartment) to a town that ONLY has a post office (nearest Wal-Mart/town is 25 miles away)! We moved here 4 months ago after my hubby accepted a position as a pastor. One phrase we heard over and over is "You're in the country now!"....hence the blog name ;)
This my experience as a semi-city girl to country girl who has her own garden, cans and freezes her crops, and maybe some day soon has some chickens!
Come along with me....learn with me, celebrate my new discoveries, laugh at my mistakes, watch my journey, be inspired to try some yourself!
We've gone from BIG, BIG city (everything we need within 5 mins of our apartment) to a town that ONLY has a post office (nearest Wal-Mart/town is 25 miles away)! We moved here 4 months ago after my hubby accepted a position as a pastor. One phrase we heard over and over is "You're in the country now!"....hence the blog name ;)
This my experience as a semi-city girl to country girl who has her own garden, cans and freezes her crops, and maybe some day soon has some chickens!
Come along with me....learn with me, celebrate my new discoveries, laugh at my mistakes, watch my journey, be inspired to try some yourself!
Saturday, May 7, 2011
Mother's Day 2011
Mother’s Day always reminds me of being pregnant for the first time…and all that we face today.
See, when I became pregnant for the first time, I started working with children with special needs. I did play therapy and assessed kids developmentally. The kids that I worked with had diagnosis ranging from speech delay to spina bifida to down syndrome….there was great variety. They all had two things in common. One, they were all under three years old. Two, they were all children.
Now, if you are like I was, I didn’t think I could handle some of the diagnosis. I am not a medical person and the thought of trachs, feeding tubes, and such was more than I could think about. The funniest thing happened though. When I went to see one of these kids, what I saw was that they were a child. Their diagnosis or medical equipment didn’t attract my attention first. It was that I was looking at and talking with a child. I soon found that the Lord grew me in my tolerance and love not only for my job but for the children I worked with…all the while knowing I had a child of my own growing inside of me.
At this time, I lived in a small town and it was apparent there that most of the children we serviced were from low-income housing. It was my responsibility to go to their homes once or twice a week to provide in-home services for the child, which of course lead to discussions with the parents and exposure to their living conditions. I make absolutely no judgments and know that my experience is limited to that time and place, but what I saw was most of these children’s moms didn’t know how to care for their children or their house. Often times, the home was littered with bugs visible everywhere to the point I was afraid to wear open-toed shoes or sit on the floor, as was my job. Old food was left all over the house. Many times other adults were in and out of the house constantly with no regard to the children that were present. Kids were dirty and undressed. The parents were uneducated and unable to work, especially when faced with a child with special needs. And my heart broke for these families.
At this time, I was a fairly new Christian without ever having anyone to help disciple me or show me how to study my Bible and grow in my relationship with the Lord. My understanding was very limited to salvation and little else besides the Old Testament accounts of Samson, Moses, and such. But, as I worked with these children and fell in love with them, I began to pray for them and my own child-to-come. I remember several times praying and asking the Lord that IF He had a certain number or quota of special needs children to place in this world, that He would be gracious enough to give one to my husband and me and spare another family like I was working with. I told Him I knew that He was teaching me and equipping me to work with children such as these and wanted to give and do the very best for the child. I prayed that my child would have special needs to spare another.
(Looking back now, I know this speaks volumes about my ignorance of sovereignty and more but my faith was real in trusting Him)
I did have a hard pregnancy with that child and there were some red flags along the way. Each time, the Lord would send me a rainbow in the sky, and I knew that He was reminding me that everything would be okay…to be still in Him. The delivery was also difficult, even with them inducing me two weeks early. Little did I know that it was just the beginning
Isaiah was born without any apparent problems, but he was extremely jaundiced. For the first weeks of his life, he lived in a light box we brought home and he daily had to have his heels pricked for blood tests. How pitiful it was to look at his blackened heels from all the blood-letting. But, he recovered from that without complication.
At fourteen months, our doctor ordered an x-ray and then MRI of Isaiah’s arm and neck/spine after we again brought up to him that Isaiah was holding his left arm bent at the elbow at all times. This was to be his first time for an MRI and anesthesia. It would be our first lesson in being his advocate. The eventual result was a diagnosis of brachial neuropathy, which means that several of his nerves in his neck/spine have been strained and some severed resulting in limited mobility and muscle atrophy. They said it either happens at birth, in which case is immediately apparent…and it wasn’t, or that it requires a car-accident type of trauma, which he never had. So, they cannot explain how he has it. They told us he would never be able to do what he was already doing and that they wanted to do a spinal tap on our 14 month old to clarify their diagnosis...although they knew that regardless of what they found they would not change their course of action. We refused. Instead, he received intensive OT and PT for 6 months until he would hold it down more normally and use it more frequently. We were so heartbroken at his diagnosis, because we envisioned him at school-age with kids laughing at him and how that would shape and change his joyful personality. Yes, even at 2 years old, he was a very joyful child! The Lord began to increase our prayer life greatly through this as we prayed for wisdom and for Isaiah. He still has the muscle atrophy today but most people don’t realize his brachial neuropathy by looking at him….answered prayer!
Fast-forward from Isaiah at age 2 to age 7. Every Mother’s Day, or approaching the day, I was reminded again of my desperate prayers while pregnant with him, pleading with the Lord to allow me to have a child with special needs and spare someone else. I looked at what he has and felt guilty that maybe I had caused him to have problems, because the Lord just answered my prayers. But, the Lord in the meantime had moved us to a Bible-preaching church that taught us the truth and we grew more in that time than ever before. And, He began to show me that He doesn’t have X number of illnesses and such to hand out and that He had a plan for me and Isaiah before Isaiah was even born. But, the guilt that I felt didn’t allow me to dwell on it much to let Him get through with His truth. Deep down, I still carried it with me.
At the age of 7, Isaiah was diagnosed with a craniopharyngioma brain tumor. The shortened version is that within the next 3.5 years of his life, he would have 7 surgeries, 4 procedures, 31 radiation treatments, lose all of his vision with minimal recovery, develop a foot-to-hip blood clot, develop total hormone-production loss, need complete rehab to relearn walking, eating, dressing, etc and face life-long complications.
Now, fast-forward to Isaiah at age 11….today. As Mother’s Day 2011 is approaching in the next couple of days, my mind is again drawn back to all these things. I realize just how much the Lord has grown me personally in my knowledge and relationship with Him...yet He still isn’t finished with me! I was thinking about the guilt that I carried about those fervent prayers for Isaiah to have special needs and ALL that he has endured since then. I thought about how prideful, arrogant, and assuming it seems to pray in such a way. But, the Lord reminded me of the sincerity and faith that was true of my prayers when I prayed them. I didn’t pray them because I thought I was better than any other mother but because I had Him…and that’s what made the difference. I prayed those prayers to spare others because I knew that He would be with me and provide whatever I may need.
And, in that moment, He showed me that the Holy Spirit lead me to pray such a prayer because He was preparing my heart for the child He already knew was being formed within me. He knew of the trials and complications that Isaiah would face in this life. He knew of the heartache, weariness of soul, and anguish I would feel as his mother. He knew the torment Isaiah would endure. And He knew what it would mean to me today to know that He chose me to be Isaiah’s mother when He could’ve chosen anyone else and that this is the child I prayed for before I even knew him.
I don’t know what lies ahead for Isaiah, whether unspeakable joy or unrelenting pain, but I know that the Lord has privileged me to walk it with him and that He will give me everything I need to continue the journey until He calls me home.
See, when I became pregnant for the first time, I started working with children with special needs. I did play therapy and assessed kids developmentally. The kids that I worked with had diagnosis ranging from speech delay to spina bifida to down syndrome….there was great variety. They all had two things in common. One, they were all under three years old. Two, they were all children.
Now, if you are like I was, I didn’t think I could handle some of the diagnosis. I am not a medical person and the thought of trachs, feeding tubes, and such was more than I could think about. The funniest thing happened though. When I went to see one of these kids, what I saw was that they were a child. Their diagnosis or medical equipment didn’t attract my attention first. It was that I was looking at and talking with a child. I soon found that the Lord grew me in my tolerance and love not only for my job but for the children I worked with…all the while knowing I had a child of my own growing inside of me.
At this time, I lived in a small town and it was apparent there that most of the children we serviced were from low-income housing. It was my responsibility to go to their homes once or twice a week to provide in-home services for the child, which of course lead to discussions with the parents and exposure to their living conditions. I make absolutely no judgments and know that my experience is limited to that time and place, but what I saw was most of these children’s moms didn’t know how to care for their children or their house. Often times, the home was littered with bugs visible everywhere to the point I was afraid to wear open-toed shoes or sit on the floor, as was my job. Old food was left all over the house. Many times other adults were in and out of the house constantly with no regard to the children that were present. Kids were dirty and undressed. The parents were uneducated and unable to work, especially when faced with a child with special needs. And my heart broke for these families.
At this time, I was a fairly new Christian without ever having anyone to help disciple me or show me how to study my Bible and grow in my relationship with the Lord. My understanding was very limited to salvation and little else besides the Old Testament accounts of Samson, Moses, and such. But, as I worked with these children and fell in love with them, I began to pray for them and my own child-to-come. I remember several times praying and asking the Lord that IF He had a certain number or quota of special needs children to place in this world, that He would be gracious enough to give one to my husband and me and spare another family like I was working with. I told Him I knew that He was teaching me and equipping me to work with children such as these and wanted to give and do the very best for the child. I prayed that my child would have special needs to spare another.
(Looking back now, I know this speaks volumes about my ignorance of sovereignty and more but my faith was real in trusting Him)
I did have a hard pregnancy with that child and there were some red flags along the way. Each time, the Lord would send me a rainbow in the sky, and I knew that He was reminding me that everything would be okay…to be still in Him. The delivery was also difficult, even with them inducing me two weeks early. Little did I know that it was just the beginning
Isaiah was born without any apparent problems, but he was extremely jaundiced. For the first weeks of his life, he lived in a light box we brought home and he daily had to have his heels pricked for blood tests. How pitiful it was to look at his blackened heels from all the blood-letting. But, he recovered from that without complication.
At fourteen months, our doctor ordered an x-ray and then MRI of Isaiah’s arm and neck/spine after we again brought up to him that Isaiah was holding his left arm bent at the elbow at all times. This was to be his first time for an MRI and anesthesia. It would be our first lesson in being his advocate. The eventual result was a diagnosis of brachial neuropathy, which means that several of his nerves in his neck/spine have been strained and some severed resulting in limited mobility and muscle atrophy. They said it either happens at birth, in which case is immediately apparent…and it wasn’t, or that it requires a car-accident type of trauma, which he never had. So, they cannot explain how he has it. They told us he would never be able to do what he was already doing and that they wanted to do a spinal tap on our 14 month old to clarify their diagnosis...although they knew that regardless of what they found they would not change their course of action. We refused. Instead, he received intensive OT and PT for 6 months until he would hold it down more normally and use it more frequently. We were so heartbroken at his diagnosis, because we envisioned him at school-age with kids laughing at him and how that would shape and change his joyful personality. Yes, even at 2 years old, he was a very joyful child! The Lord began to increase our prayer life greatly through this as we prayed for wisdom and for Isaiah. He still has the muscle atrophy today but most people don’t realize his brachial neuropathy by looking at him….answered prayer!
Fast-forward from Isaiah at age 2 to age 7. Every Mother’s Day, or approaching the day, I was reminded again of my desperate prayers while pregnant with him, pleading with the Lord to allow me to have a child with special needs and spare someone else. I looked at what he has and felt guilty that maybe I had caused him to have problems, because the Lord just answered my prayers. But, the Lord in the meantime had moved us to a Bible-preaching church that taught us the truth and we grew more in that time than ever before. And, He began to show me that He doesn’t have X number of illnesses and such to hand out and that He had a plan for me and Isaiah before Isaiah was even born. But, the guilt that I felt didn’t allow me to dwell on it much to let Him get through with His truth. Deep down, I still carried it with me.
At the age of 7, Isaiah was diagnosed with a craniopharyngioma brain tumor. The shortened version is that within the next 3.5 years of his life, he would have 7 surgeries, 4 procedures, 31 radiation treatments, lose all of his vision with minimal recovery, develop a foot-to-hip blood clot, develop total hormone-production loss, need complete rehab to relearn walking, eating, dressing, etc and face life-long complications.
Now, fast-forward to Isaiah at age 11….today. As Mother’s Day 2011 is approaching in the next couple of days, my mind is again drawn back to all these things. I realize just how much the Lord has grown me personally in my knowledge and relationship with Him...yet He still isn’t finished with me! I was thinking about the guilt that I carried about those fervent prayers for Isaiah to have special needs and ALL that he has endured since then. I thought about how prideful, arrogant, and assuming it seems to pray in such a way. But, the Lord reminded me of the sincerity and faith that was true of my prayers when I prayed them. I didn’t pray them because I thought I was better than any other mother but because I had Him…and that’s what made the difference. I prayed those prayers to spare others because I knew that He would be with me and provide whatever I may need.
And, in that moment, He showed me that the Holy Spirit lead me to pray such a prayer because He was preparing my heart for the child He already knew was being formed within me. He knew of the trials and complications that Isaiah would face in this life. He knew of the heartache, weariness of soul, and anguish I would feel as his mother. He knew the torment Isaiah would endure. And He knew what it would mean to me today to know that He chose me to be Isaiah’s mother when He could’ve chosen anyone else and that this is the child I prayed for before I even knew him.
I don’t know what lies ahead for Isaiah, whether unspeakable joy or unrelenting pain, but I know that the Lord has privileged me to walk it with him and that He will give me everything I need to continue the journey until He calls me home.
Thursday, August 26, 2010
Saturday, July 10, 2010
What You Might Not Know About Our June (part 1)
On June 4, 2010, my oldest son Isaiah underwent his 2nd craniotomy, which was his 6th brain surgery, to remove as much of his craniopharyngioma brain tumor as possible. I won't take time now to go into how he is a unique case or why we didn't do this before. Suffice it to say, the surgery took less than half the time expected and they were able to completely remove all but a few millimeters of calcified (dead) tissue. Since that miracle, we have faced many gains, losses, and lessons. It is my hope and prayer that by sharing these with you, some of the ways the Lord has worked and is working in our situation will be shown. And although each of us (Isaiah, my husband, our other 2 children, and I) have been effected by them differently, these need to be from our side. His siblings were shielded from much of this and Isaiah doesn't remember any of it now. (Short-term memory loss is one side-effect from brain surgery)
Isaiah woke up from surgery without vision. His optic nerves are healthy, there's no bleeding, no swelling that would cause it. Endocrine, neurology, and opthamology cannot explain why he cannot see. Yet, his mind supplied him images as it tried to make sense of what it sensed. He saw things that weren't there and tried to interact with them by reaching out, opening jars that weren't there, eating food that's not real, etc. What further complicates this is that he suffered from psychosis. This is from him spending 4 days in ICU immediately following surgery, his sodium levels thrown off from surgery, and because of the area of brain effected by surgery. Many times, he thought he is somewhere else. There are times when he didn't even recognize us as his parents.
The amazing blessing of this time is that even when he was not in his right mind, he was concerned with showing and leading others to Jesus and during his hardest struggles he cried out to the Lord-praying aloud for help and to glorify Him.
With not having his vision, Isaiah was forced back into an almost infant-like state. He couldn't do anything himself. We had to begin with the basics and teach him to get his hand to his mouth so he could begin to feed himself hand-held foods and be able to drink from a "sports bottle" that was really a sippy-cup with a straw. He also had to learn to feel the food against his mouth as we spoon-fed him to know when to open his mouth for a bite or a drink. Once he had that, we began to work on teaching him to hold and use a fork and spoon again. These are much harder to do when you cannot see the food that you are trying to get onto them. He had to learn to use both hands together, as they didn't seem to naturally want to, to hold the container with one and scoop with the other. At this point, we weren't even trying to check out his mobility yet.
As he was moved to a regular room and his sodium levels started to stabilize, the psychosis episodes became better. We daily had to walk a line between "pushing reality" and "going along with him". We had to determine when to correct him (no, honey, there's not a monkey in that corner) and when to go along with it (it's okay, I'll take the snake out of the room). We learned pretty quickly the more we tried to push that we were his parents the more agitated and terrified he got. Those times, he did best to just give him space (as much as we could safely)and try to gently find a "connection point"--some frame of reference that helped to bring him back to reality. Sometimes he was hilarious. Sometimes he was terrifying.
Blessing--the worst episode while we were still at Le Bonheur lasted 20 minutes. Let me just say, Isaiah thought we were strangers there to hurt him and he was beyond wide-eyed terrified and shaking. We were trying everything we could to help him find that connection point but nothing worked. He wouldn't answer us or do anything we asked. We had to let him walk around his room and try to give him space. Finally, he sat on the couch with us in his room. Now, remember...he can't see anything! The Lord prompted me to remind Isaiah of lunch earlier that day. See, at lunch it was just the two of us, and we called it a "lunch date". While he ate, the Lord impressed upon me to get out the hymnal that we just "happened" to bring from home and to sing some songs to him. During one of the songs, he joined me in singing. So, as he is struggling in this episode, I reminded him of having a lunch date with his mommy that day. He remembered that. I reminded him of singing with her. He remembered that. So, I started singing "Power in the Blood"...that was the song. As I started singing, he again immediately joined in on his lines. I sang the whole song with him. By the end of the song, he was completely back to himself. He knew who he was, where he was, and who we were. There is no special power to that song, but the Lord used it mightily to restore our son that day!
After he got to a regular room, we also began to get him up. First to stand by the bed and then to take a few steps. Like with his other surgeries, he needed to relearn his coordination and balance. We noticed that he walked better while singing, so as we were walking him down the hallways we sang a Veggie Tales song "Keep Walking" and "I Walk By Faith". We prayed that not only would it help Isaiah but that it would encourage other patients, their families, and the nurses. The OT/PT nurses had him singing "Father Abraham" as well. He began those services as well as Speech (for memory) while at Le Bonheur. These would carry over to St. Jude once we were released. The last several days at Le Bonheur were filled with sodium checks, rehab services, and some carry-overs from ICU. These included off/on fevers, short, shallow breathing, and pain in his left ankle. The fevers were explained that it resulted from the area of brain traumatized by surgery. The shallow breathing was looked at by chest x-ray, which came back clear. And the ankle pain was thought to be result from a blown IV and another attempted IV stick. As we left Le Bonheur 11 days after his surgery, we knew he would be followed up at St. Jude as we have since the beginning of this journey almost 3 years prior.
I know there are many things that I am leaving out, like all the wonderful visits from friends and family, including several families from church coming and singing worship songs with us in our room, all the cards and calls of encouragement, and more. If you were part of that, we daily thank the Lord for you and pray that He continually blesses you for your generosity and willingness to follow His leading :) As we left Le Bonheur to head home, we knew the road ahead was going to be different from what we'd traveled before, but we didn't realize just how different it was going to be....
Isaiah woke up from surgery without vision. His optic nerves are healthy, there's no bleeding, no swelling that would cause it. Endocrine, neurology, and opthamology cannot explain why he cannot see. Yet, his mind supplied him images as it tried to make sense of what it sensed. He saw things that weren't there and tried to interact with them by reaching out, opening jars that weren't there, eating food that's not real, etc. What further complicates this is that he suffered from psychosis. This is from him spending 4 days in ICU immediately following surgery, his sodium levels thrown off from surgery, and because of the area of brain effected by surgery. Many times, he thought he is somewhere else. There are times when he didn't even recognize us as his parents.
The amazing blessing of this time is that even when he was not in his right mind, he was concerned with showing and leading others to Jesus and during his hardest struggles he cried out to the Lord-praying aloud for help and to glorify Him.
With not having his vision, Isaiah was forced back into an almost infant-like state. He couldn't do anything himself. We had to begin with the basics and teach him to get his hand to his mouth so he could begin to feed himself hand-held foods and be able to drink from a "sports bottle" that was really a sippy-cup with a straw. He also had to learn to feel the food against his mouth as we spoon-fed him to know when to open his mouth for a bite or a drink. Once he had that, we began to work on teaching him to hold and use a fork and spoon again. These are much harder to do when you cannot see the food that you are trying to get onto them. He had to learn to use both hands together, as they didn't seem to naturally want to, to hold the container with one and scoop with the other. At this point, we weren't even trying to check out his mobility yet.
As he was moved to a regular room and his sodium levels started to stabilize, the psychosis episodes became better. We daily had to walk a line between "pushing reality" and "going along with him". We had to determine when to correct him (no, honey, there's not a monkey in that corner) and when to go along with it (it's okay, I'll take the snake out of the room). We learned pretty quickly the more we tried to push that we were his parents the more agitated and terrified he got. Those times, he did best to just give him space (as much as we could safely)and try to gently find a "connection point"--some frame of reference that helped to bring him back to reality. Sometimes he was hilarious. Sometimes he was terrifying.
Blessing--the worst episode while we were still at Le Bonheur lasted 20 minutes. Let me just say, Isaiah thought we were strangers there to hurt him and he was beyond wide-eyed terrified and shaking. We were trying everything we could to help him find that connection point but nothing worked. He wouldn't answer us or do anything we asked. We had to let him walk around his room and try to give him space. Finally, he sat on the couch with us in his room. Now, remember...he can't see anything! The Lord prompted me to remind Isaiah of lunch earlier that day. See, at lunch it was just the two of us, and we called it a "lunch date". While he ate, the Lord impressed upon me to get out the hymnal that we just "happened" to bring from home and to sing some songs to him. During one of the songs, he joined me in singing. So, as he is struggling in this episode, I reminded him of having a lunch date with his mommy that day. He remembered that. I reminded him of singing with her. He remembered that. So, I started singing "Power in the Blood"...that was the song. As I started singing, he again immediately joined in on his lines. I sang the whole song with him. By the end of the song, he was completely back to himself. He knew who he was, where he was, and who we were. There is no special power to that song, but the Lord used it mightily to restore our son that day!
After he got to a regular room, we also began to get him up. First to stand by the bed and then to take a few steps. Like with his other surgeries, he needed to relearn his coordination and balance. We noticed that he walked better while singing, so as we were walking him down the hallways we sang a Veggie Tales song "Keep Walking" and "I Walk By Faith". We prayed that not only would it help Isaiah but that it would encourage other patients, their families, and the nurses. The OT/PT nurses had him singing "Father Abraham" as well. He began those services as well as Speech (for memory) while at Le Bonheur. These would carry over to St. Jude once we were released. The last several days at Le Bonheur were filled with sodium checks, rehab services, and some carry-overs from ICU. These included off/on fevers, short, shallow breathing, and pain in his left ankle. The fevers were explained that it resulted from the area of brain traumatized by surgery. The shallow breathing was looked at by chest x-ray, which came back clear. And the ankle pain was thought to be result from a blown IV and another attempted IV stick. As we left Le Bonheur 11 days after his surgery, we knew he would be followed up at St. Jude as we have since the beginning of this journey almost 3 years prior.
I know there are many things that I am leaving out, like all the wonderful visits from friends and family, including several families from church coming and singing worship songs with us in our room, all the cards and calls of encouragement, and more. If you were part of that, we daily thank the Lord for you and pray that He continually blesses you for your generosity and willingness to follow His leading :) As we left Le Bonheur to head home, we knew the road ahead was going to be different from what we'd traveled before, but we didn't realize just how different it was going to be....
Friday, May 14, 2010
Borrowed from Amanda Boisvert Wozich site for her daughter
I am copying and pasting this from another brain tumor family. It is one of the most well-written explanations as to the particular stages to the journey we are on, where we are and have been, and where we are headed. I hope this helps to inform you all! The following is her writing:
In the brain tumor world (perhaps the whole cancer community, I'm not really sure) there are several ways to describe where your child is at in their brain tumor journey. There are those who are on active treatment of some sort, either scheduled for surgery, or undergoing chemo and or radiation. Those who have already completed their treatment, their scans show no evidence of disease (NED) and they go for follow up scans and meet with several other types of doctors to treat the fall out of their treatments (endocrinologists, neurologists, orthopedic doctors etc). Those who have entered the dreaded palliative care part of their journey, where the medical world can offer no more hope and can only provide medications to ease the child's pain as they prepare to leave this earth. And, then there are those of us who are "watching and living". People on this portion of the journey may have already undergone surgery, chemo, or radiation or a combination of the three, and for the most part their scans still show some disease, but doctors want to watch and wait to see what happens.
For many children with low grade gliomas, watching and living is a fact of life because unless a full surgical resection is achieved, chemo will not cure the disease; it might shrink the tumor a bit, but more than likely it will just stabilize it. The hope is that the tumor will remain stable for a period of time even after chemo is stopped. With radiation, there is more hope that the tumor will be "turned off" for good, but the potential side effects for children who are young are horrible. Radiation can cause strokes, a decrease in IQ, thyroid problems, growth and hormone problems, and those are just the ones I can think of off the top of my head. So, while radiation does offer some hope at killing these tumors, because of the potential long term or late effects, it is generally used as a last resort (at least in low grade gliomas). Many children with low grade gliomas go through a chemo protocol (which is usually at least a year of treatment) and then they will "watch and live" until the tumor starts to progress again, and they will again go on another chemo protocol. Oh and by the way, the chemo has many potential side effects as well, both short and long term. From what our oncologists have told us, low grade gliomas can go though long periods of dormancy (years) and then for some unknown reason they will start to grow again. So although it is WONDERFUL that Sammy has remained stable for almost a year and a half with no treatment other than her surgery, it certainly does not mean that it will not grow again in the future. Our oncologists have also told us that low grade gliomas in children to tend to arrest themselves when the child reaches maturity and they no longer present a problem, but there is no research available to prove this, it is just what they "tend to see" with these types of tumors. From what I have heard, some doctors think this is true, while others do not.
So, right now, we are "watching and living". In many ways we have been so blessed in this cancer journey, and I know that there are so many out there that would love to be “watching and living”. I know we are fortunate that Sammy’s tumor has “behaved” for the past year and a half. I know we are fortunate our daughter isn’t currently on treatment and we don’t have to contend with all the crap that goes along with having a child on chemo. And, I certainly know we are fortunate that we have not exhausted all medical hope and that we aren’t watching our child slowing or quickly wither away. But, that doesn’t mean that “watching and living” is easy.
For a long time, rather than “watching and living”, I was “watching and watching”. I was so consumed by the fear that Sammy’s tumor would progress that I couldn’t enjoy anything. I watched Sammy’s symptoms constantly. I still do sometimes, even after we just had a stable MRI, not even a month ago, at times I still convince myself that her symptoms are worsening. It is hard to be objective when fear seeps in. I remember one evening in particular where I looked at Sammy’s eyes from a strange angle and convinced myself her pupils were different sizes. I cannot even begin to describe to you the debilitating fear that washed over me. A huge surge of adrenaline shot through my body, I broke out into a cold sweat, my hands were shaking and I felt like I had tunnel vision. Her pupils were fine, I was just looking at her from an odd angle, but I didn’t sleep for the next two nights, and I was constantly looking at Sammy’s eyes checking her pupil size. Life can turn upside down pretty quickly when you have a child with a brain tumor.
I also feel somewhat isolated, as we have a daughter with a brain tumor, but because she isn’t currently on treatment, we very rarely see other parents of children with cancer or brain tumors. No one can understand what it is like to have a child with a serious medical condition unless they have lived it. While other parents try to understand and relate, it just isn’t the same as being able to talk with someone who can relate to every irrational thought you have ever had. I am so sick of people telling us how “lucky” we are. Really? We are lucky? Our daughter has a brain tumor. Now realistically, I know that we have witnessed many miracles where Sammy is concerned, and that things could be SO much worse. God has blessed us; God had mercy on us for some unknown reason. But, we are NOT lucky. I am sick of people telling me that this whole brain tumor “thing” is over; people who don’t have to talk to our doctors or who have not done any research with regard to Sammy’s tumor. I can understand that people have “gut” feelings about things, and that they may truly believe that this brain tumor “thing” is in the past. Boy do I hope that is true in terms of tumor progression, but our lives were forever changed on the day Sammy was diagnosed. This brain tumor “thing”, will never be over for us. No matter how long Sammy’s tumor remains stable there will always be the chance that it will grow again. Perhaps the chance gets smaller, but it is still there none the less. Sammy will also have MRI’s for a very long time, and she will be dealing with the damage the tumor did for the rest of her life. So, while I know people’s intentions are good and that they are trying to comfort me with these words, it can be frustrating and isolating when you don’t have access to other parents of children with brain tumors; people who get what you are feeling. Who don’t think you are being negative or pessimistic.
During this “watching and living” phase of our journey, we live a fairly normal life, and are surrounded by healthy children. You can’t help but want that to continue; for Sammy to be able to remain in school and do all the things kids her age do. We want her to just be Sammy and not the kid with the brain tumor. For now she gets to do that, and we are very grateful, because there are some kids that don’t get that opportunity, but there is always the fear that it will change. That Sammy will have to go on chemo, and miss school, and lose her hair, and lose her “normal” kid status. There is fear that her tumor will cause her issues with learning, moving, seizures, etc. Now there are many kids that are on chemo and have physical or mental impairments that get along just fine and lead happy lives, and I know Sammy could as well, but if that doesn’t have to happen, clearly I don’t want it to. Growing up is so hard for kids with normal challenges, imagine how hard it could be for a child like Samantha should her tumor start progressing.
Now, as I said in the beginning, each phase of this journey has its challenges. I am not saying that “watching and living” is as hard as some of the other phases, but it certainly isn’t easy. We are fearful much of the time, we feel isolated, and we so want our children to continue to live a “normal” life. Although, the longer we have been doing this the easier it has become. I have learned that my fear can convince me that symptoms are worse, and I am more able to calm myself and be more objective. I still analyze symptoms, but I have learned over time not to take my fears so seriously because I have had them many times in the past and they proved not accurate. I also don’t feel quite so isolated, as I have found and online community of people who are truly supportive and also have a wealth of medical knowledge. Our family will be attending a Brain Tumor week at Camp Sunshine this summer, and since we live so close, I have filled out an application to volunteer there during the rest of the summer. And as for hoping that Sammy will have a normal childhood that will never change, it will always be my hope, but I accept that other possibilities might be okay too.
So, that is a glimpse of our life of “watching and living”. Not sure how other families who live this life feel, but these are some of the things I feel. May is Brain Tumor awareness month…if you have read this entry, you are now more aware! J
In the brain tumor world (perhaps the whole cancer community, I'm not really sure) there are several ways to describe where your child is at in their brain tumor journey. There are those who are on active treatment of some sort, either scheduled for surgery, or undergoing chemo and or radiation. Those who have already completed their treatment, their scans show no evidence of disease (NED) and they go for follow up scans and meet with several other types of doctors to treat the fall out of their treatments (endocrinologists, neurologists, orthopedic doctors etc). Those who have entered the dreaded palliative care part of their journey, where the medical world can offer no more hope and can only provide medications to ease the child's pain as they prepare to leave this earth. And, then there are those of us who are "watching and living". People on this portion of the journey may have already undergone surgery, chemo, or radiation or a combination of the three, and for the most part their scans still show some disease, but doctors want to watch and wait to see what happens.
For many children with low grade gliomas, watching and living is a fact of life because unless a full surgical resection is achieved, chemo will not cure the disease; it might shrink the tumor a bit, but more than likely it will just stabilize it. The hope is that the tumor will remain stable for a period of time even after chemo is stopped. With radiation, there is more hope that the tumor will be "turned off" for good, but the potential side effects for children who are young are horrible. Radiation can cause strokes, a decrease in IQ, thyroid problems, growth and hormone problems, and those are just the ones I can think of off the top of my head. So, while radiation does offer some hope at killing these tumors, because of the potential long term or late effects, it is generally used as a last resort (at least in low grade gliomas). Many children with low grade gliomas go through a chemo protocol (which is usually at least a year of treatment) and then they will "watch and live" until the tumor starts to progress again, and they will again go on another chemo protocol. Oh and by the way, the chemo has many potential side effects as well, both short and long term. From what our oncologists have told us, low grade gliomas can go though long periods of dormancy (years) and then for some unknown reason they will start to grow again. So although it is WONDERFUL that Sammy has remained stable for almost a year and a half with no treatment other than her surgery, it certainly does not mean that it will not grow again in the future. Our oncologists have also told us that low grade gliomas in children to tend to arrest themselves when the child reaches maturity and they no longer present a problem, but there is no research available to prove this, it is just what they "tend to see" with these types of tumors. From what I have heard, some doctors think this is true, while others do not.
So, right now, we are "watching and living". In many ways we have been so blessed in this cancer journey, and I know that there are so many out there that would love to be “watching and living”. I know we are fortunate that Sammy’s tumor has “behaved” for the past year and a half. I know we are fortunate our daughter isn’t currently on treatment and we don’t have to contend with all the crap that goes along with having a child on chemo. And, I certainly know we are fortunate that we have not exhausted all medical hope and that we aren’t watching our child slowing or quickly wither away. But, that doesn’t mean that “watching and living” is easy.
For a long time, rather than “watching and living”, I was “watching and watching”. I was so consumed by the fear that Sammy’s tumor would progress that I couldn’t enjoy anything. I watched Sammy’s symptoms constantly. I still do sometimes, even after we just had a stable MRI, not even a month ago, at times I still convince myself that her symptoms are worsening. It is hard to be objective when fear seeps in. I remember one evening in particular where I looked at Sammy’s eyes from a strange angle and convinced myself her pupils were different sizes. I cannot even begin to describe to you the debilitating fear that washed over me. A huge surge of adrenaline shot through my body, I broke out into a cold sweat, my hands were shaking and I felt like I had tunnel vision. Her pupils were fine, I was just looking at her from an odd angle, but I didn’t sleep for the next two nights, and I was constantly looking at Sammy’s eyes checking her pupil size. Life can turn upside down pretty quickly when you have a child with a brain tumor.
I also feel somewhat isolated, as we have a daughter with a brain tumor, but because she isn’t currently on treatment, we very rarely see other parents of children with cancer or brain tumors. No one can understand what it is like to have a child with a serious medical condition unless they have lived it. While other parents try to understand and relate, it just isn’t the same as being able to talk with someone who can relate to every irrational thought you have ever had. I am so sick of people telling us how “lucky” we are. Really? We are lucky? Our daughter has a brain tumor. Now realistically, I know that we have witnessed many miracles where Sammy is concerned, and that things could be SO much worse. God has blessed us; God had mercy on us for some unknown reason. But, we are NOT lucky. I am sick of people telling me that this whole brain tumor “thing” is over; people who don’t have to talk to our doctors or who have not done any research with regard to Sammy’s tumor. I can understand that people have “gut” feelings about things, and that they may truly believe that this brain tumor “thing” is in the past. Boy do I hope that is true in terms of tumor progression, but our lives were forever changed on the day Sammy was diagnosed. This brain tumor “thing”, will never be over for us. No matter how long Sammy’s tumor remains stable there will always be the chance that it will grow again. Perhaps the chance gets smaller, but it is still there none the less. Sammy will also have MRI’s for a very long time, and she will be dealing with the damage the tumor did for the rest of her life. So, while I know people’s intentions are good and that they are trying to comfort me with these words, it can be frustrating and isolating when you don’t have access to other parents of children with brain tumors; people who get what you are feeling. Who don’t think you are being negative or pessimistic.
During this “watching and living” phase of our journey, we live a fairly normal life, and are surrounded by healthy children. You can’t help but want that to continue; for Sammy to be able to remain in school and do all the things kids her age do. We want her to just be Sammy and not the kid with the brain tumor. For now she gets to do that, and we are very grateful, because there are some kids that don’t get that opportunity, but there is always the fear that it will change. That Sammy will have to go on chemo, and miss school, and lose her hair, and lose her “normal” kid status. There is fear that her tumor will cause her issues with learning, moving, seizures, etc. Now there are many kids that are on chemo and have physical or mental impairments that get along just fine and lead happy lives, and I know Sammy could as well, but if that doesn’t have to happen, clearly I don’t want it to. Growing up is so hard for kids with normal challenges, imagine how hard it could be for a child like Samantha should her tumor start progressing.
Now, as I said in the beginning, each phase of this journey has its challenges. I am not saying that “watching and living” is as hard as some of the other phases, but it certainly isn’t easy. We are fearful much of the time, we feel isolated, and we so want our children to continue to live a “normal” life. Although, the longer we have been doing this the easier it has become. I have learned that my fear can convince me that symptoms are worse, and I am more able to calm myself and be more objective. I still analyze symptoms, but I have learned over time not to take my fears so seriously because I have had them many times in the past and they proved not accurate. I also don’t feel quite so isolated, as I have found and online community of people who are truly supportive and also have a wealth of medical knowledge. Our family will be attending a Brain Tumor week at Camp Sunshine this summer, and since we live so close, I have filled out an application to volunteer there during the rest of the summer. And as for hoping that Sammy will have a normal childhood that will never change, it will always be my hope, but I accept that other possibilities might be okay too.
So, that is a glimpse of our life of “watching and living”. Not sure how other families who live this life feel, but these are some of the things I feel. May is Brain Tumor awareness month…if you have read this entry, you are now more aware! J
Wednesday, May 12, 2010
Such a strong person
As I am waiting for the phone call to tell when's the date for my son's 6th surgery for his brain tumor, it's impressed on me to share this with you. See, it is my heart's desire to live transparently for the glory of the Lord. Because of the nature of my son's diagnosis, we have faced a lot of turmoil, trials, and suffering, and we have been put in contact with others that are also hurting. One comment that we receive over and over is that we are such strong people or that the Lord must know we are so strong and that's why He has given us such a hard road to walk.
Nothing could be farther from the truth!
We struggle. We hurt. We cry. We lose our patience. We grieve. We wrestle with the responsibility of having to make life-death decisions for someone else. We are overwhelmed. Sometimes we don't even have the words. It is not our strength. If you only knew what a weak vessel that I am! See, my nephew was diagnosed with a malignant brain tumor at 14 months...a year before Isaiah was. I was overcome and vividly remember thinking, "I can not imagine if that was my child. I could not handle it." Little did I know that would be us a year later..almost a year to the same week. Understand that the Lord was preparing me and showing me that I was right. I don't have the strength. I never do. But I have something better!
As His child, I have the Holy Spirit..the Great Comforter! Daily, and sometimes moment-by-moment, I am strengthened by the Lord. I have others praying for me/us. We tend to trivialize the power of prayer but it is the greatest thing we can do for ourselves and others! How do I know? Because when we get that bad news, my first thought is "Lord, give me the strength! I can't do this! It has to be You!" And He is always there. We physically, emotionally, and spiritually feel His strength when we know that we don't have any left in our bodies.
Don't get me wrong-it's still hard. It doesn't take away all the human emotions that we feel or the responsibility that we have. But, it does give us peace and calm in that situation/moment. Under it all, His is our anchor that keeps us grounded. I know without a doubt that without Him, I would be drowning in these storms. I cannot imagine going through any of this without Him, even though we see other families that are. For them, there is no peace, no sense of Hope or understanding...only bitterness, anger, confusion, lostness.
Before you think that somehow I was created stronger than you or that I can handle more than you, take your eyes off me and put them where they belong...on the Lord. Because the strength you see when you look at me is not mine..it's His and His alone.
I can honestly say that my husband and I have peace regardless of the outcome from this surgery...and we are truly facing a possibility that our son will not make it through the surgery or will never be the same child afterward. We have had to lay him on the altar of the Lord, trusting He knows better than us, understanding our children are not really ours but we are stewards of precious gifts given by the Lord for a time, and are secured in Romans 8:28 (For we know that all things are working together for good to those that love the Lord and are called according to His purposes).
I found the lyrics to this song and wanted to share it. It's a call to live transparently, too. It is by Tenth Avenue North "Healing Begins":
So you thought you had to keep this up
All the work that you do
So we think that you're good
And you can't believe it's not enough
All the walls you built up
Are just glass on the outside
So let 'em fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark
Afraid to let your secrets out
Everything that you hide
Can come crashing through the door now
But too scared to face all your fear
So you hide but you find
That the shame won't disappear
So let it fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
We're here now, oh
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark
Sparks will fly as grace collides
With the dark inside of us
So please don't fight
This coming light
Let this blood come cover us
His blood can cover us
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark
Nothing could be farther from the truth!
We struggle. We hurt. We cry. We lose our patience. We grieve. We wrestle with the responsibility of having to make life-death decisions for someone else. We are overwhelmed. Sometimes we don't even have the words. It is not our strength. If you only knew what a weak vessel that I am! See, my nephew was diagnosed with a malignant brain tumor at 14 months...a year before Isaiah was. I was overcome and vividly remember thinking, "I can not imagine if that was my child. I could not handle it." Little did I know that would be us a year later..almost a year to the same week. Understand that the Lord was preparing me and showing me that I was right. I don't have the strength. I never do. But I have something better!
As His child, I have the Holy Spirit..the Great Comforter! Daily, and sometimes moment-by-moment, I am strengthened by the Lord. I have others praying for me/us. We tend to trivialize the power of prayer but it is the greatest thing we can do for ourselves and others! How do I know? Because when we get that bad news, my first thought is "Lord, give me the strength! I can't do this! It has to be You!" And He is always there. We physically, emotionally, and spiritually feel His strength when we know that we don't have any left in our bodies.
Don't get me wrong-it's still hard. It doesn't take away all the human emotions that we feel or the responsibility that we have. But, it does give us peace and calm in that situation/moment. Under it all, His is our anchor that keeps us grounded. I know without a doubt that without Him, I would be drowning in these storms. I cannot imagine going through any of this without Him, even though we see other families that are. For them, there is no peace, no sense of Hope or understanding...only bitterness, anger, confusion, lostness.
Before you think that somehow I was created stronger than you or that I can handle more than you, take your eyes off me and put them where they belong...on the Lord. Because the strength you see when you look at me is not mine..it's His and His alone.
I can honestly say that my husband and I have peace regardless of the outcome from this surgery...and we are truly facing a possibility that our son will not make it through the surgery or will never be the same child afterward. We have had to lay him on the altar of the Lord, trusting He knows better than us, understanding our children are not really ours but we are stewards of precious gifts given by the Lord for a time, and are secured in Romans 8:28 (For we know that all things are working together for good to those that love the Lord and are called according to His purposes).
I found the lyrics to this song and wanted to share it. It's a call to live transparently, too. It is by Tenth Avenue North "Healing Begins":
So you thought you had to keep this up
All the work that you do
So we think that you're good
And you can't believe it's not enough
All the walls you built up
Are just glass on the outside
So let 'em fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark
Afraid to let your secrets out
Everything that you hide
Can come crashing through the door now
But too scared to face all your fear
So you hide but you find
That the shame won't disappear
So let it fall down
There's freedom waiting in the sound
When you let your walls fall to the ground
We're here now
We're here now, oh
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark
Sparks will fly as grace collides
With the dark inside of us
So please don't fight
This coming light
Let this blood come cover us
His blood can cover us
This is where the healing begins, oh
This is where the healing starts
When you come to where you're broken within
The light meets the dark
The light meets the dark
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