This has been a tough week in so many ways. In addition to the every day stress of dealing with Simon's illness, we have added a massive cold that is making its' way around the house. Sore throats, coughs, runny noses, general crabbiness, have been the norm.
My head feels like a giant balloon, only much heavier. The pressure is building constantly, ready to explode at any moment. My neck is struggling to hold up the extra weight. My ears are so plugged up that I am having trouble hearing. Sinus colds are bad enough, but this one has been compounded by my exhaustion.
Tending to Simon, and the other 3 kids who were sick this week, has wiped me out. The late night in the ER on Wednesday robbed me of much needed, precious sleep. Illness is a luxury at this time that I cannot afford!
I am feeling like I have reached the end of my rope, and am holding on for dear life. If I let go, I'll fall into the abyss. I haven't the strength to climb back up the rope.
Others have seen in me a strength I certainly do not feel. As I have struggled with my faith and questioned my lack of faith, others have been encouraged and even challenged by my faith. The Bible talks of faith the size of a mustard seed being able to move mountains, and this is a grand thing, because right now, I am wondering if my faith is even that big.
The summer before my 9th grade year, I went to Camp Castaway, a Young Life Camp on Lake Pelican in Minnesota. It was a great experience. One of the activities was para sailing. The boat pulled me off of the dock with a parachute strapped to my back. As I soared over the lake, I was able to see so many different places on the lake, places that I could only see from my new vantage point, not from the ground. I am thankful that God can see the whole picture in the situation I now find myself.
At Camp Castaway, we also spent a lot of time in activities that taught us that we can often do things that at first seem impossible if we work together as a team and if we learn to trust one another. While the path I am on right now often appears to be impassable, I am learning to rely on my team of friends and family and prayer warriors to help me through the obstacles placed before me.
This morning, as I struggled to fight back the tears that come from exhaustion and a pounding head, I thought about being at the end of my rope. From the end of the rope, there is no where to go but up. I have no strength for the climb.
Then I hear the still small voice whisper in my ear. "Trust Me." "But Lord, I am too tired!" "Trust Me." "But Lord, I haven't the strength." "Trust Me." "But Lord, I am at the end!" "Trust Me."
It was then that I was reminded of camp so many years ago. From my perspective, it may look as though I am indeed at the very end of my rope, but God can see far more than I can. Although the prospect of traveling further down the rope is not one I relish, I am thankful that I can trust my God who knows exactly how much rope there is left, and won't take me beyond the rope's end. He will not let me slide into the abyss.! The rope is longer than I can perceive, and while I may not have the strength to climb back up it, God has given me a team that will help me find the way to the top, just as our team was able to find a way to get every member up and over the insurmountable wall at camp.
And I give thanks for my God of trust, and I give thanks for the strength that comes from the team that surrounds me.
A diary through the thoughts of a mother whose son was diagnosed with a critical illness.
Saturday, February 28, 2009
Thursday, February 26, 2009
Wednesday Night's ER Visit
My plans and God's plans aren't always the same. I had planned on attending a board meeting, but God's plans led me to the ER instead. Simon awoke this morning with a cough, which had me nervous. I went to a meeting at Warren's school, and then to work for a couple of hours. Bob stayed with Simon, checking his temperature every couple of hours, and answering phone calls from me.
When I arrived home, Simon was doing great. His cough was better, and he was more energetic than he has been in the last 5 days. In good spirits, I prepared dinner and made plans to attend a school board meeting. As I pulled the biscuits out of the oven, Simon called out that his nose was bleeding. We have had several false alarms over the last 4 weeks, so I wasn't too concerned.
When I walked into the living room, I knew this time was different. The tissue in Simon's hand was bright red. There was more blood than I had expected, and the color was wrong. Fruit punch was coming from his nose. It was lighter in color than it had been only 2 days earlier. I got the nose clip put of Simon's fanny pack and started watching the clock. I tried to remove the clip after 5 minutes. Still gushing. 10 minutes. No change.
Mom fed the other kids while I gathered up needed items for the trip into town. 15 minutes and I called the clinic. Then we waited for the call back. After 15 minutes, I called the service back and told them we were headed to the ER, leaving my cell phone number for a call back. From the end of the driveway until the school, we are in a cell phone dead zone. It is only a 10 minute drive, but tonight it seemed to take forever. At one point, I saw that I had a message, but was unable to retrieve it.
As soon as we cleared the trees, I listened to the message from the doctor, confirming our decision to head to the ER. He also asked that we have the ER doctor contact him as soon he examined Simon.
Hurry up and wait. The ER staff took Simon's vitals, and now we sit and wait in the waiting room. We have been here for close to an hour, sitting in the waiting room with my vulnerable son and sick people. Just as I finished typing that last sentence, they finally sent us to a room.
Now we wait for the doctor. Simon's poor nose is going to be black and blue by the time they remove the clip! I need to read my book, "The Promise: God's Purpose and Plan For When Life Hurts." My precious Simon is hurting right now and my mother's heart is aching for him and his future.
The above was typed into my blackberry last night as we sat in the waiting room in the ER. It was about 45 minutes after we had a room that someone finally came to check on Simon. By then, I had taken the clip off and his bleeding had stopped.
Frustration was my constant companion last night. When my oldest 2 boys were around 7 and 4, they had been playing in their room and Oliver came out to tattle on his brother. Warren had a plastic suit of Christian armor. Oliver came running into the kitchen. "Mom, Warren hit me in the head with the belt of truth!" Ever since then, I always recall that story when I feel someone has a deep need to be hit in the head with the belt of truth!
Being a non-violent person, I am, by nature opposed to violence. However, last night, I seriously would have liked to smack a physician's assistant over the head with the belt of truth! She entered the room, looked up Simon's nose with her light and saw no source for the bleeding. Her suggestion was to give Simon some saline and send him home! No blood work, no talking to his doctor, no nothing.
While she did not say it, I felt that she was thinking we were stupid people who just spent $100 dollars on an emergency room co-pay for a simple nose bleed. She just didn't get it. She was condescending and left me feeling very frustrated. I told her that Simon's doctor wanted a call from the ER doctor before we were sent home. She agreed, although some what grudgingly, to speak to the doctor on the floor.
I don't know if he explained to her exactly what aplastic anemia was, or if they actually spoke to Dr. Cook, but after that, they did come and do some blood work. Then we waited for another hour for those results to come in.
Simon's platelets were only down slightly from Monday's counts and the bleeding had stopped. Dr. Cook gave the ER doctor instructions for us to pick up some Afrin to shrink the blood vessels in Simon's nose and to follow up with him, and we were sent home.
It was after 10 by the time we left the ER, 11 by the time we stopped at the store and reached home. I was exhausted, frustrated, and angry. I took a very sick child to the ER and left feeling belittled and stupid. It was all I could do to hold myself together on the ride home. I just wanted to cry and scream and rant and rage. Only God gave me the strength to keep it together. (I probably wouldn't have bothered, but did not want to upset or scare Simon.)
This morning, Simon had and appointment at the clinic. They were flabbergasted by our treatment. The fact that they would make such a vulnerable child wait in the small seating area with several sick people was inexcusable. This morning's counts showed Simon's granulcytes down to .6, with .5 being the critical number, requiring special treatment. His hemoglobin was also down, probably from the blood loss of the night before.
In future emergencies, we will take the extra time to drive to the other side of town, where they have a pediatric ER. It is also the hospital where Simon had his surgery and has already received 2 transfusions, so they have his information on file with the blood bank and standing orders if he needs platelets.
I was thankful for today's clinic visit. It helped me to be reassured that I had not over-reacted in last night's trip to the ER. I was reassured that Simon is still okay, in spite of the bumbling of last night. He does have a nasty cough, but his lungs sound fine and he has not had any fever, so it is not something to worry about at this point in time.
This morning, before the doctor's appointment, Bob and I were able to attend a worm expert day in Beau's kindergarten class. I am amazed by the knowledge those little children possess! Perhaps some of those scientists will grow up to become doctors or researchers who can help children like Simon.
Tomorrow, I have to miss my weekly coffee with my girl friends, but I am blessed to have the opportunity to substitute in the fourth grade classroom. I have missed teaching since Simon became ill. It is so hard to believe that we are only 4 weeks out from the beginning of this whole ordeal. (In fact, yesterday was EXACTLY 4 weeks from the day we learned that something was seriously wrong with Simon. We were even in the same room in the ER where we first heard those words which so changed our lives.)
Now it is almost 8 o'clock. All of the kids, except for Warren, are in bed. Bob is already asleep, and I am going to post this blog and call it a night myself. It has been a VERY long day, and I can't keep my eyes open any longer.
Next Thursday, the whole family is scheduled to have our blood tested as possible bone marrow matches.
When I arrived home, Simon was doing great. His cough was better, and he was more energetic than he has been in the last 5 days. In good spirits, I prepared dinner and made plans to attend a school board meeting. As I pulled the biscuits out of the oven, Simon called out that his nose was bleeding. We have had several false alarms over the last 4 weeks, so I wasn't too concerned.
When I walked into the living room, I knew this time was different. The tissue in Simon's hand was bright red. There was more blood than I had expected, and the color was wrong. Fruit punch was coming from his nose. It was lighter in color than it had been only 2 days earlier. I got the nose clip put of Simon's fanny pack and started watching the clock. I tried to remove the clip after 5 minutes. Still gushing. 10 minutes. No change.
Mom fed the other kids while I gathered up needed items for the trip into town. 15 minutes and I called the clinic. Then we waited for the call back. After 15 minutes, I called the service back and told them we were headed to the ER, leaving my cell phone number for a call back. From the end of the driveway until the school, we are in a cell phone dead zone. It is only a 10 minute drive, but tonight it seemed to take forever. At one point, I saw that I had a message, but was unable to retrieve it.
As soon as we cleared the trees, I listened to the message from the doctor, confirming our decision to head to the ER. He also asked that we have the ER doctor contact him as soon he examined Simon.
Hurry up and wait. The ER staff took Simon's vitals, and now we sit and wait in the waiting room. We have been here for close to an hour, sitting in the waiting room with my vulnerable son and sick people. Just as I finished typing that last sentence, they finally sent us to a room.
Now we wait for the doctor. Simon's poor nose is going to be black and blue by the time they remove the clip! I need to read my book, "The Promise: God's Purpose and Plan For When Life Hurts." My precious Simon is hurting right now and my mother's heart is aching for him and his future.
The above was typed into my blackberry last night as we sat in the waiting room in the ER. It was about 45 minutes after we had a room that someone finally came to check on Simon. By then, I had taken the clip off and his bleeding had stopped.
Frustration was my constant companion last night. When my oldest 2 boys were around 7 and 4, they had been playing in their room and Oliver came out to tattle on his brother. Warren had a plastic suit of Christian armor. Oliver came running into the kitchen. "Mom, Warren hit me in the head with the belt of truth!" Ever since then, I always recall that story when I feel someone has a deep need to be hit in the head with the belt of truth!
Being a non-violent person, I am, by nature opposed to violence. However, last night, I seriously would have liked to smack a physician's assistant over the head with the belt of truth! She entered the room, looked up Simon's nose with her light and saw no source for the bleeding. Her suggestion was to give Simon some saline and send him home! No blood work, no talking to his doctor, no nothing.
While she did not say it, I felt that she was thinking we were stupid people who just spent $100 dollars on an emergency room co-pay for a simple nose bleed. She just didn't get it. She was condescending and left me feeling very frustrated. I told her that Simon's doctor wanted a call from the ER doctor before we were sent home. She agreed, although some what grudgingly, to speak to the doctor on the floor.
I don't know if he explained to her exactly what aplastic anemia was, or if they actually spoke to Dr. Cook, but after that, they did come and do some blood work. Then we waited for another hour for those results to come in.
Simon's platelets were only down slightly from Monday's counts and the bleeding had stopped. Dr. Cook gave the ER doctor instructions for us to pick up some Afrin to shrink the blood vessels in Simon's nose and to follow up with him, and we were sent home.
It was after 10 by the time we left the ER, 11 by the time we stopped at the store and reached home. I was exhausted, frustrated, and angry. I took a very sick child to the ER and left feeling belittled and stupid. It was all I could do to hold myself together on the ride home. I just wanted to cry and scream and rant and rage. Only God gave me the strength to keep it together. (I probably wouldn't have bothered, but did not want to upset or scare Simon.)
This morning, Simon had and appointment at the clinic. They were flabbergasted by our treatment. The fact that they would make such a vulnerable child wait in the small seating area with several sick people was inexcusable. This morning's counts showed Simon's granulcytes down to .6, with .5 being the critical number, requiring special treatment. His hemoglobin was also down, probably from the blood loss of the night before.
In future emergencies, we will take the extra time to drive to the other side of town, where they have a pediatric ER. It is also the hospital where Simon had his surgery and has already received 2 transfusions, so they have his information on file with the blood bank and standing orders if he needs platelets.
I was thankful for today's clinic visit. It helped me to be reassured that I had not over-reacted in last night's trip to the ER. I was reassured that Simon is still okay, in spite of the bumbling of last night. He does have a nasty cough, but his lungs sound fine and he has not had any fever, so it is not something to worry about at this point in time.
This morning, before the doctor's appointment, Bob and I were able to attend a worm expert day in Beau's kindergarten class. I am amazed by the knowledge those little children possess! Perhaps some of those scientists will grow up to become doctors or researchers who can help children like Simon.
Tomorrow, I have to miss my weekly coffee with my girl friends, but I am blessed to have the opportunity to substitute in the fourth grade classroom. I have missed teaching since Simon became ill. It is so hard to believe that we are only 4 weeks out from the beginning of this whole ordeal. (In fact, yesterday was EXACTLY 4 weeks from the day we learned that something was seriously wrong with Simon. We were even in the same room in the ER where we first heard those words which so changed our lives.)
Now it is almost 8 o'clock. All of the kids, except for Warren, are in bed. Bob is already asleep, and I am going to post this blog and call it a night myself. It has been a VERY long day, and I can't keep my eyes open any longer.
Next Thursday, the whole family is scheduled to have our blood tested as possible bone marrow matches.
Monday, February 23, 2009
Info I Left Out
In another 14 days, Simon will be 28 days out from the start of his treatments and will again have to receive a special IV antibiotic. It will require about an hour and a half in the clinic. The antibiotic specifically targets the bacteria that lives in all of our lungs. In a person with a weakened immune system, the bacteria can over grow, causing serious complications. He will receive this preventative measure once a month.
Also, as we near the 30 day mark, Simon will have another bone marrow biopsy, so determine whether or not he is responding to treatments.
Also, as we near the 30 day mark, Simon will have another bone marrow biopsy, so determine whether or not he is responding to treatments.
Discouragement and Hope
To say that I was surprised by today's disappointing blood counts would be a lie. As the nurse withdrew Simon's blood, I could see in it's color that my suspicions were true. Healthy blood should be a deep red, and Simon's was closer to the color of fruit punch.
Watching Simon's lethargy over the week-end prepared me for a low hemoglobin count. While Thursday and Friday had been good days, on Saturday, I knew things were moving in the wrong direction. He barely left the couch. A quick trip to the hair salon sapped what little energy he had. On Sunday, he didn't really start to wake up until 11, and even then, he spent the day listlessly on the couch.
The new bruising on his body told me that his platelets were also lower. Frequent complaints of blood taste in his mouth were also due to the lowered platelets. While there are fewer patichia on his body, the ones he has are bigger and brighter. He looks like he has been playing tackle football without any protective gear.
He has complained of stinging in his knees and ankles, which are due to serum sickness. Fortunately, those have been brief. While they may intensify as we wean him off of the steriods, the doctor assures us that the horse serum only lasts so long in the body, and its negative effects should soon be gone. If they become to uncomfortable, he will go back on the steroids for another week.
Last Thursday, I had been ready to do cartwheels up and down the sidewalk. Simon's counts had all been up, and his white cells were actually in the normal range. The granulcytes, the indicators of susceptibility to infection, at 2.4, were well above the .5 level that would mean Simon was extremely vulnerable and unable to even attend church. We had a glimpse of hope.
And yet, I knew, in the back of my mind, that it was too early to be working. I knew that I needed to guard my heart, lest a drop in counts cause me to crumble. While I held on to hope, I also prepared for what today would bring.
Today's granulcyte count was back down to .9, inching closer to the benchmark .5. Dr. Cook explained that steroids can temporarily raise that count. He also told us that there is a new medicine available that can help bring those numbers up. If Simon's levels reach .5, he will try to get the okay from the insurance company to begin those treatments. It is a very expensive drug and insurance companies have been reluctant to okay it. It will require twice a week IV treatments.
Most of the results of the specialized testing they did on Simon are back. Most of them gave no indication of what may have caused this journey in the first place. He did have indicators of possible PNH. They were low, and in a healthy child, would not mean anything. Since Simon has aplastic anemia, the test will be redone. PNH is another illness that often goes with aplastic anemia. It may be the cause. If he has PNH, he will have to have the bone marrow transplant.
There is a virus called CMV that Simon may have recently had that could have triggered the anemia, but that is also inconclusive at this point. There are a couple of other tests that are still pending.
I asked the doctor about the future, now that I have gotten past the initial shock of the diagnosis and am beginning to understand a bit more about it. I asked if the immune suppression would actually be able to cure Simon, or merely place him in remission. His honest answer was that he did not know. In other counties, they always go to transplant in kids. In the US, they have sometimes found the atgam to work. Dr. Cook's personal experience has been that the atgam at best will put him into remission for a few years, but more than likely, he will need a bone marrow transplant at some point in the future. Maybe 3 months from now, or maybe 2 years from now. The atgam is safer and easier than a transplant, so that is the first course of treatment.
If, or when, Simon has his bone marrow transplant, cure is more likely. He may have to have two transplants within a year, but would then have a better hope at a cure, rather than remission. He would be tested regularly up to the 5 year mark following transplant. At that point, recurrence would be unlikely.
Next week, the entire family will be tested for bone marrow matches. Beau still wants to be the one who gives part of himself to make his brother better.
In the mean time, we wait. We wait, and pray that Simon remains free from infection. We wait, and pray that we will be able to stop the next nose bleed, or that he doesn't start to bleed internally. We wait for those glimmers of hope that we so desperately need. We wait and pray that my discouragement doesn't show through and infect Simon's courageous spirit.
At church on Saturday night, the pastor talked about Simon. He called Simon his hero. In Simon, all those around him are able to see his courage. His attitude gives others, including his mom, hope.
Dr. Cook today commended us for how "normal" we have kept Simon's life through this extraordinary ordeal. He commented on the inner strength I seem to possess. I have heard that more than once in the last few weeks, and it still amazes me. Others may see it, but I sure don't feel it. I was able to tell the good doctor of the tremendous support we have received from both the school and the church. They have held us up through out, both physically, emotionally, and spiritually. They are the tools God has given our family to enable us to get out of bed in the morning, to face the challenges of the day.
When we left the clinic this morning, Simon said his shirt felt wet. I looked over to see blood seeping through his shirt. There wasn't a lot, and it looked like it was already drying. I looked at the bandage underneath, that covered his port. It looked like it had stopped bleeding, so we continued on our way.
We picked up Grandma from the dentist. We grabbed a bite to eat in the car. We stopped by the bank. Each time we stopped, I checked Simon's chest and saw no new signs of bleeding. We headed home, hoping to make it in time to share Beau's birthday cupcakes with his class at 1:30. First I had to get Simon and Grandma home.
When we arrived at the house, I was surprised to see more blood on Simon's shirt, as well as blood on the shoulder belt in the car. I took off Simon's bandage to discover that it was soaked through and the site were they poked him for the blood draw this morning was still bleeding.
I found some gauze and applied pressure while I tried to reach the clinic. It was their lunch hour and I couldn't get through. I called the school to let them know that I wouldn't be there for Beau. I thought I was going to be heading to the hospital.
Right after I got off the phone with the school, the bleeding finally stopped. Give thanks. He had been bleeding when we left the clinic around 10:45 and it finally stopped around 1:15. Two and a half hours of bleeding. It was blood coming from a small needle poke, so it wasn't' large amounts, but it bled for a long time.
When I was able to speak to the clinic, I got advice for future occurrences. Any bleed that doesn't stop within 15-20 minutes when pressure is applied, will require a trip to the emergency room. We would have to notify the clinic, and they would notify the ER so they could have the specially treated platelets ready for Simon on our arrival.
All in all, it has been a day of discouragement. I was expecting it, so I was prepared and did not fall apart. (My prayer is that I keep the discouragement from Simon.)
And yet, in the midst of discouragement, there were glimmers of hope. I'll hold on to hope, no matter how faint. "And now Lord, for what do I wait? My hope is in you." Psalm 39:7
And tonight, I remind myself to give thanks.
Watching Simon's lethargy over the week-end prepared me for a low hemoglobin count. While Thursday and Friday had been good days, on Saturday, I knew things were moving in the wrong direction. He barely left the couch. A quick trip to the hair salon sapped what little energy he had. On Sunday, he didn't really start to wake up until 11, and even then, he spent the day listlessly on the couch.
The new bruising on his body told me that his platelets were also lower. Frequent complaints of blood taste in his mouth were also due to the lowered platelets. While there are fewer patichia on his body, the ones he has are bigger and brighter. He looks like he has been playing tackle football without any protective gear.
He has complained of stinging in his knees and ankles, which are due to serum sickness. Fortunately, those have been brief. While they may intensify as we wean him off of the steriods, the doctor assures us that the horse serum only lasts so long in the body, and its negative effects should soon be gone. If they become to uncomfortable, he will go back on the steroids for another week.
Last Thursday, I had been ready to do cartwheels up and down the sidewalk. Simon's counts had all been up, and his white cells were actually in the normal range. The granulcytes, the indicators of susceptibility to infection, at 2.4, were well above the .5 level that would mean Simon was extremely vulnerable and unable to even attend church. We had a glimpse of hope.
And yet, I knew, in the back of my mind, that it was too early to be working. I knew that I needed to guard my heart, lest a drop in counts cause me to crumble. While I held on to hope, I also prepared for what today would bring.
Today's granulcyte count was back down to .9, inching closer to the benchmark .5. Dr. Cook explained that steroids can temporarily raise that count. He also told us that there is a new medicine available that can help bring those numbers up. If Simon's levels reach .5, he will try to get the okay from the insurance company to begin those treatments. It is a very expensive drug and insurance companies have been reluctant to okay it. It will require twice a week IV treatments.
Most of the results of the specialized testing they did on Simon are back. Most of them gave no indication of what may have caused this journey in the first place. He did have indicators of possible PNH. They were low, and in a healthy child, would not mean anything. Since Simon has aplastic anemia, the test will be redone. PNH is another illness that often goes with aplastic anemia. It may be the cause. If he has PNH, he will have to have the bone marrow transplant.
There is a virus called CMV that Simon may have recently had that could have triggered the anemia, but that is also inconclusive at this point. There are a couple of other tests that are still pending.
I asked the doctor about the future, now that I have gotten past the initial shock of the diagnosis and am beginning to understand a bit more about it. I asked if the immune suppression would actually be able to cure Simon, or merely place him in remission. His honest answer was that he did not know. In other counties, they always go to transplant in kids. In the US, they have sometimes found the atgam to work. Dr. Cook's personal experience has been that the atgam at best will put him into remission for a few years, but more than likely, he will need a bone marrow transplant at some point in the future. Maybe 3 months from now, or maybe 2 years from now. The atgam is safer and easier than a transplant, so that is the first course of treatment.
If, or when, Simon has his bone marrow transplant, cure is more likely. He may have to have two transplants within a year, but would then have a better hope at a cure, rather than remission. He would be tested regularly up to the 5 year mark following transplant. At that point, recurrence would be unlikely.
Next week, the entire family will be tested for bone marrow matches. Beau still wants to be the one who gives part of himself to make his brother better.
In the mean time, we wait. We wait, and pray that Simon remains free from infection. We wait, and pray that we will be able to stop the next nose bleed, or that he doesn't start to bleed internally. We wait for those glimmers of hope that we so desperately need. We wait and pray that my discouragement doesn't show through and infect Simon's courageous spirit.
At church on Saturday night, the pastor talked about Simon. He called Simon his hero. In Simon, all those around him are able to see his courage. His attitude gives others, including his mom, hope.
Dr. Cook today commended us for how "normal" we have kept Simon's life through this extraordinary ordeal. He commented on the inner strength I seem to possess. I have heard that more than once in the last few weeks, and it still amazes me. Others may see it, but I sure don't feel it. I was able to tell the good doctor of the tremendous support we have received from both the school and the church. They have held us up through out, both physically, emotionally, and spiritually. They are the tools God has given our family to enable us to get out of bed in the morning, to face the challenges of the day.
When we left the clinic this morning, Simon said his shirt felt wet. I looked over to see blood seeping through his shirt. There wasn't a lot, and it looked like it was already drying. I looked at the bandage underneath, that covered his port. It looked like it had stopped bleeding, so we continued on our way.
We picked up Grandma from the dentist. We grabbed a bite to eat in the car. We stopped by the bank. Each time we stopped, I checked Simon's chest and saw no new signs of bleeding. We headed home, hoping to make it in time to share Beau's birthday cupcakes with his class at 1:30. First I had to get Simon and Grandma home.
When we arrived at the house, I was surprised to see more blood on Simon's shirt, as well as blood on the shoulder belt in the car. I took off Simon's bandage to discover that it was soaked through and the site were they poked him for the blood draw this morning was still bleeding.
I found some gauze and applied pressure while I tried to reach the clinic. It was their lunch hour and I couldn't get through. I called the school to let them know that I wouldn't be there for Beau. I thought I was going to be heading to the hospital.
Right after I got off the phone with the school, the bleeding finally stopped. Give thanks. He had been bleeding when we left the clinic around 10:45 and it finally stopped around 1:15. Two and a half hours of bleeding. It was blood coming from a small needle poke, so it wasn't' large amounts, but it bled for a long time.
When I was able to speak to the clinic, I got advice for future occurrences. Any bleed that doesn't stop within 15-20 minutes when pressure is applied, will require a trip to the emergency room. We would have to notify the clinic, and they would notify the ER so they could have the specially treated platelets ready for Simon on our arrival.
All in all, it has been a day of discouragement. I was expecting it, so I was prepared and did not fall apart. (My prayer is that I keep the discouragement from Simon.)
And yet, in the midst of discouragement, there were glimmers of hope. I'll hold on to hope, no matter how faint. "And now Lord, for what do I wait? My hope is in you." Psalm 39:7
And tonight, I remind myself to give thanks.
Saturday, February 21, 2009
Patience
Patience has never been one of my strengths. I also learned a long time ago not to ask God for patience, because every time I do, He puts me in a situation that requires me to learn patience!
Well, this time I did not ask for it, but I am having to exercise it none the less. Simon finished his atgam treatments on Friday, February 13. Now we wait, and wait, and wait. Twice a week visits to the clinic, and we wait.
Monday's visit was uneventful. Other than tired, Simon was feeling fairly well. His blood count levels were about the same as they had been on Friday. His granulcytes were still high enough that he was able to go to orchestra on Tuesday afternoon. He played a bit on the violin, but mostly just listened and followed along with the music. His arms got tired really fast. I think he just enjoyed being able to be out.
I was able to work for a couple of hours on Thursday, so Bob took Simon in for his check up. Every single count was up! All of his white count areas were actually in the normal range! His red counts had risen also. Though still low, they were going up, inching closer to normal. His platelets were also up, though still lower than the first count when this whole thing started. Normal for the platelets is 140- 440. Simon's have been as low as 7, but now they were back up to 17. Still a long ways to go, but at least heading up.
I was beginning to fill the first glimmers of hope. Perhaps this wasn't going to be quite as difficult as we had anticipated. On Monday, the doctor was encouraging, feeling that Simon had a good chance of this treatment being successful. At Thursday's visit, she told Bob she was "cautiously optimistic." Simon's energy levels were definitely improving also. I wanted to jump up and down and tell the whole world that my son was getting better!
It felt good to walk the halls of the school and be able to honestly reply to the question of how Simon was doing with a positive answer. "Simon is doing well."
Simon did have a few nose bleeds this week, but they have all been minor and easily controlled.
This morning, however, things seem to have slipped back a bit. While the last two days were days of hope as we witnessed Simon's increased energy and received the good news of his blood counts, today has been a day of discouragement. Simon is once again drained of all energy. Getting off the couch has left him exhausted.
His dad has taken him in to get a much needed haircut. I made the appointment yesterday, when he appeared to be doing so well. Today, I almost canceled it. My prayer is that while we took two steps forward, we have only taken one step back. I am reminded that we did not anticipate a speedy recovery, and we need to rejoice in every step forward, regardless of what comes after.
On Thursday evening, a friend took me to an Anita Renfroe concert. It was a much needed break. If you have not heard of her, she is a comedian and the author of the Mom Song, which can be found on youtube. I spent the evening laughing out loud until there were tears rolling down my cheeks. I can't remember the last time I have laughed so hard! I am very thankful for this friend who knew I needed the medicine of laughter so desperately right now.
While most of the evening was spent rolling in laughter, towards the end, Anita talked about the importance of friendship and holding each other up, standing in the gap for one another. The tears that flowed at that point were a combination. Tears of sadness for Simon and all he is going through and his uncertain future, but also tears of gratitude for all the dear friends who have been standing in the gap for Simon and our entire family. After that song, she instructed us to hug the woman next to us and tell her "You will get through this." Those words, spoken by a friend as she embraced me, were so needed. I knew then that I would get through this, because of all those who have been willing to stand in the gap and hold me up.
As I faced today, feeling a bit discouraged, I am reminded that I will indeed get through with the help of all those standing in the gap. And while patience is still not a strength, I am honestly able to give thanks on this day.
Well, this time I did not ask for it, but I am having to exercise it none the less. Simon finished his atgam treatments on Friday, February 13. Now we wait, and wait, and wait. Twice a week visits to the clinic, and we wait.
Monday's visit was uneventful. Other than tired, Simon was feeling fairly well. His blood count levels were about the same as they had been on Friday. His granulcytes were still high enough that he was able to go to orchestra on Tuesday afternoon. He played a bit on the violin, but mostly just listened and followed along with the music. His arms got tired really fast. I think he just enjoyed being able to be out.
I was able to work for a couple of hours on Thursday, so Bob took Simon in for his check up. Every single count was up! All of his white count areas were actually in the normal range! His red counts had risen also. Though still low, they were going up, inching closer to normal. His platelets were also up, though still lower than the first count when this whole thing started. Normal for the platelets is 140- 440. Simon's have been as low as 7, but now they were back up to 17. Still a long ways to go, but at least heading up.
I was beginning to fill the first glimmers of hope. Perhaps this wasn't going to be quite as difficult as we had anticipated. On Monday, the doctor was encouraging, feeling that Simon had a good chance of this treatment being successful. At Thursday's visit, she told Bob she was "cautiously optimistic." Simon's energy levels were definitely improving also. I wanted to jump up and down and tell the whole world that my son was getting better!
It felt good to walk the halls of the school and be able to honestly reply to the question of how Simon was doing with a positive answer. "Simon is doing well."
Simon did have a few nose bleeds this week, but they have all been minor and easily controlled.
This morning, however, things seem to have slipped back a bit. While the last two days were days of hope as we witnessed Simon's increased energy and received the good news of his blood counts, today has been a day of discouragement. Simon is once again drained of all energy. Getting off the couch has left him exhausted.
His dad has taken him in to get a much needed haircut. I made the appointment yesterday, when he appeared to be doing so well. Today, I almost canceled it. My prayer is that while we took two steps forward, we have only taken one step back. I am reminded that we did not anticipate a speedy recovery, and we need to rejoice in every step forward, regardless of what comes after.
On Thursday evening, a friend took me to an Anita Renfroe concert. It was a much needed break. If you have not heard of her, she is a comedian and the author of the Mom Song, which can be found on youtube. I spent the evening laughing out loud until there were tears rolling down my cheeks. I can't remember the last time I have laughed so hard! I am very thankful for this friend who knew I needed the medicine of laughter so desperately right now.
While most of the evening was spent rolling in laughter, towards the end, Anita talked about the importance of friendship and holding each other up, standing in the gap for one another. The tears that flowed at that point were a combination. Tears of sadness for Simon and all he is going through and his uncertain future, but also tears of gratitude for all the dear friends who have been standing in the gap for Simon and our entire family. After that song, she instructed us to hug the woman next to us and tell her "You will get through this." Those words, spoken by a friend as she embraced me, were so needed. I knew then that I would get through this, because of all those who have been willing to stand in the gap and hold me up.
As I faced today, feeling a bit discouraged, I am reminded that I will indeed get through with the help of all those standing in the gap. And while patience is still not a strength, I am honestly able to give thanks on this day.
Monday, February 16, 2009
Monday Evening Update
Yesterday was Beau's birthday. He turned 6. We started the day with Sunday School. It is so encouraging to gather with other believer's. Yesterday was "I love my church" Sunday, so all the kids received t-shirts. By the time Sunday School was over, Simon was wiped out, so we were unable to stay for the service, but we were thankful for the time we did have. It was Simon's first opportunity to attend since his diagnosis.
After church, we came home and rested, in preparation for the afternoon. We had a busy day planned, and were praying that Simon would be able to manage.
Beau had chosen a day at the symphony for his birthday, followed by ice-cream at Good Times. Ezri's teacher plays the Viola in the Pikes Peak Philharmonic and the kids enjoy going to watch her play.
Simon enjoyed the music, but was very tired. He had his blanket with him and leaned against his dad for most of the show. Other than being extremely tired, he has been doing well.
During the intermission, Miss Hatch came down and talked to the kids. That makes the kids feel special. She wished Beau a happy birthday. When the conductor came out for the second half, he dedicated it to a special guest in the audience who was celebrating his 6th birthday, Beau Wright. Beau was sure excited about that!
Following the symphony, we went out for ice-cream and gave Beau his presents. All in all, it was a normal day, spent with family, celebrating Beau. In other word, it was a much needed break from the last 2.5 weeks!
On the way home, Simon was struck with a bad case of heartburn. I gave him some medicine, but that took a while to start working, and Simon got a bit scared. Eventually, the pain subsided and Simon had a good night's sleep.
This morning, I took Simon in for blood work and a check up. His levels have only dropped slightly since Friday, which I found encouraging. The doctor called in a prescription for stomach medicine to help with the heartburn. Simon has always had mild problems with it, but apparently the steroids can cause reflux issues.
Simon's granul0cyte levels are still high enough that small groups are okay. I would love for him to be able to attend orchestra at least a couple of times this week. It is hard for him to be couped up all the time. Whether or not he is able to go will depend on his energy level. Simple things tire him out.
I spoke with a counselor at Focus on the Family today. I was looking for resources on how to help the other kids deal with Simon's illness. I know it is hard for them to know that Simon is sick, but Simon doesn't seem sick. Life revolves around Simon right now, and that is going to be our reality for some time. The counselor gave me some ideas on how to help the other kids and is also sending out some resources.
Now we wait. Simon's next appointment is Thursday. It could be up to 3 months before we know if the treatments have worked. Patience has never been one of my strengths, so I guess God is going to continue working on that with me. "They that wait upon the Lord. . . "
I picked up a new book yesterday that I am hoping will help ME deal with life right now. It is called "The Promise: God's Purpose and Plan For When Life Hurts." I have read the first chapter and am liking what I have read so far.
Other than that, life continues, which is something I am very thankful for. As a family, we are coping. Bone weary tired is normal for Simon these days, and his mom isn't much better. As long as Simon is doing well, and Bob is home, I am hoping to be back at the school, working when I can. Substitute teaching is something I greatly enjoy and it makes me feel good about myself. It helps me to be a better mom, and I am at the school with my kids. The best of both worlds.
Hope you have a blessed week and thank you for your continued prayers.
After church, we came home and rested, in preparation for the afternoon. We had a busy day planned, and were praying that Simon would be able to manage.
Beau had chosen a day at the symphony for his birthday, followed by ice-cream at Good Times. Ezri's teacher plays the Viola in the Pikes Peak Philharmonic and the kids enjoy going to watch her play.
Simon enjoyed the music, but was very tired. He had his blanket with him and leaned against his dad for most of the show. Other than being extremely tired, he has been doing well.
During the intermission, Miss Hatch came down and talked to the kids. That makes the kids feel special. She wished Beau a happy birthday. When the conductor came out for the second half, he dedicated it to a special guest in the audience who was celebrating his 6th birthday, Beau Wright. Beau was sure excited about that!
Following the symphony, we went out for ice-cream and gave Beau his presents. All in all, it was a normal day, spent with family, celebrating Beau. In other word, it was a much needed break from the last 2.5 weeks!
On the way home, Simon was struck with a bad case of heartburn. I gave him some medicine, but that took a while to start working, and Simon got a bit scared. Eventually, the pain subsided and Simon had a good night's sleep.
This morning, I took Simon in for blood work and a check up. His levels have only dropped slightly since Friday, which I found encouraging. The doctor called in a prescription for stomach medicine to help with the heartburn. Simon has always had mild problems with it, but apparently the steroids can cause reflux issues.
Simon's granul0cyte levels are still high enough that small groups are okay. I would love for him to be able to attend orchestra at least a couple of times this week. It is hard for him to be couped up all the time. Whether or not he is able to go will depend on his energy level. Simple things tire him out.
I spoke with a counselor at Focus on the Family today. I was looking for resources on how to help the other kids deal with Simon's illness. I know it is hard for them to know that Simon is sick, but Simon doesn't seem sick. Life revolves around Simon right now, and that is going to be our reality for some time. The counselor gave me some ideas on how to help the other kids and is also sending out some resources.
Now we wait. Simon's next appointment is Thursday. It could be up to 3 months before we know if the treatments have worked. Patience has never been one of my strengths, so I guess God is going to continue working on that with me. "They that wait upon the Lord. . . "
I picked up a new book yesterday that I am hoping will help ME deal with life right now. It is called "The Promise: God's Purpose and Plan For When Life Hurts." I have read the first chapter and am liking what I have read so far.
Other than that, life continues, which is something I am very thankful for. As a family, we are coping. Bone weary tired is normal for Simon these days, and his mom isn't much better. As long as Simon is doing well, and Bob is home, I am hoping to be back at the school, working when I can. Substitute teaching is something I greatly enjoy and it makes me feel good about myself. It helps me to be a better mom, and I am at the school with my kids. The best of both worlds.
Hope you have a blessed week and thank you for your continued prayers.
Sunday, February 15, 2009
Preparing for the Big Question
It is Sunday morning, and I plan to spend the day rejoicing and celebrating my family. Our baby, Beau, is 6 years old today! The plan is Sunday school and church this morning, and the symphony this afternoon followed by ice cream at Goodtimes. (Beau chose the symphony, believe it or not!)
Simon is a bit tired, but other wise doing well. His spots are all but gone. (They come and go, but have been pretty significant the last few days.) His granulocytes, the part of the white blood cells that fights illness and infection, are high enough that Simon can go out to church and perhaps even the symphony. (We can sit in the back and away from other people.) His were at 1.5 on Friday, up from .6 on Tuesday. At current level, small gatherings are okay. When the number gets down to around .5, he will have to avoid even small groups.
Simon has been in good spirits, for the most part, since this started. He has had a few panic attack, but he is feeling pretty good. Because he doesn't feel sick, it is hard for him to understand that he is sick. He knows that he is running out of blood and that his bone marrow is not working. I suspect that as we progress, he will begin to comprehend the seriousness of his illness.
As a mother, I myself am trying to comprehend the seriousness of what we are facing. Only 500-1000 people a year are diagnosed with aplastic anemia in this country. Without treatment, survival rate 1 year out is only 26%. Thank God for treatments! As late as the 1980's aplastic anemia was almost always fatal. Thank God for modern medicine!
I will have more questions for the doctor when we go in on Monday. My understanding is that Simon's current treatments are not likely to result in a cure, but rather buy him time while we look for a bone marrow match. Hopefully, we will have the results of the blood test that were sent away. Even then, we are unlikely to have an answer to what triggered this.
I am fearful that as Simon begins to understand more about his illness, he is going to ask me the "big" question. "Am I going to die?" How does a mother prepare her heart for that question?
"Be strong and courageous. Do not be afraid or terrified because of them (or aplastic anemia), for the Lord your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6
"The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid. Do not be discouraged." Deuteronomy 31:8
"I will never leave you nor forsake you." Joshua 1:5b
When I looked up the phrase "fear not," it came back with 231 references. I have to hold tightly to that. How can this mother's heart tell her son to "fear not," when she is so very afraid?
I need to find courage in the fact that I am not on this journey alone. God is always with us, and friends and strangers have surrounded us with support.
And I will hold tightly to God's promises even as I hold tightly to my ill son.
Simon is a bit tired, but other wise doing well. His spots are all but gone. (They come and go, but have been pretty significant the last few days.) His granulocytes, the part of the white blood cells that fights illness and infection, are high enough that Simon can go out to church and perhaps even the symphony. (We can sit in the back and away from other people.) His were at 1.5 on Friday, up from .6 on Tuesday. At current level, small gatherings are okay. When the number gets down to around .5, he will have to avoid even small groups.
Simon has been in good spirits, for the most part, since this started. He has had a few panic attack, but he is feeling pretty good. Because he doesn't feel sick, it is hard for him to understand that he is sick. He knows that he is running out of blood and that his bone marrow is not working. I suspect that as we progress, he will begin to comprehend the seriousness of his illness.
As a mother, I myself am trying to comprehend the seriousness of what we are facing. Only 500-1000 people a year are diagnosed with aplastic anemia in this country. Without treatment, survival rate 1 year out is only 26%. Thank God for treatments! As late as the 1980's aplastic anemia was almost always fatal. Thank God for modern medicine!
I will have more questions for the doctor when we go in on Monday. My understanding is that Simon's current treatments are not likely to result in a cure, but rather buy him time while we look for a bone marrow match. Hopefully, we will have the results of the blood test that were sent away. Even then, we are unlikely to have an answer to what triggered this.
I am fearful that as Simon begins to understand more about his illness, he is going to ask me the "big" question. "Am I going to die?" How does a mother prepare her heart for that question?
"Be strong and courageous. Do not be afraid or terrified because of them (or aplastic anemia), for the Lord your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6
"The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid. Do not be discouraged." Deuteronomy 31:8
"I will never leave you nor forsake you." Joshua 1:5b
When I looked up the phrase "fear not," it came back with 231 references. I have to hold tightly to that. How can this mother's heart tell her son to "fear not," when she is so very afraid?
I need to find courage in the fact that I am not on this journey alone. God is always with us, and friends and strangers have surrounded us with support.
And I will hold tightly to God's promises even as I hold tightly to my ill son.
Friday, February 13, 2009
It is only 4:45 and we are already home! Simon's treatment went without a hitch today. Not only did he have no reactions, but they were also able to increase the rate of his medicine, so we were able to be out of there in record time. It felt good to not be the last ones in the clinic.
We did have a special treat at the clinic before lunch. Simon's teacher came by to visit with him. It was great to have company. Simon was encouraged by the visit, as was I. Since the kids had a snow day, Mrs. H was free to come by. What a blessing!
Simon is done with the Atgam treatments. Now we wait and see. On Monday, he will go in for blood work, but the long days at the clinic are over for now. Life should be able to return to some semblance of normal. It will be good to be home.
The clinic is going to work on approval from the insurance company to have the family tested as possible bone marrow matches.
Simon and Ezri are playing together, and picking on Beau. In other words, family life appears normal. It is one of those times when it is hard to grasp how very sick Simon is. He doesn't seem different from a month ago or two months ago. He is happy and active. How can this child be critically ill?
Tomorrow may present new challenges, as our bi-polar child starts on heavy doses of steroids. I will put that worry aside for tomorrow.
Tonight, I am going to get dressed up and go to a Valentine's Banquet with my husband. Some much needed time away from the stress of the past two and half weeks. I am going to pray that the kids stop fighting and can let me have this small thing!
We did have a special treat at the clinic before lunch. Simon's teacher came by to visit with him. It was great to have company. Simon was encouraged by the visit, as was I. Since the kids had a snow day, Mrs. H was free to come by. What a blessing!
Simon is done with the Atgam treatments. Now we wait and see. On Monday, he will go in for blood work, but the long days at the clinic are over for now. Life should be able to return to some semblance of normal. It will be good to be home.
The clinic is going to work on approval from the insurance company to have the family tested as possible bone marrow matches.
Simon and Ezri are playing together, and picking on Beau. In other words, family life appears normal. It is one of those times when it is hard to grasp how very sick Simon is. He doesn't seem different from a month ago or two months ago. He is happy and active. How can this child be critically ill?
Tomorrow may present new challenges, as our bi-polar child starts on heavy doses of steroids. I will put that worry aside for tomorrow.
Tonight, I am going to get dressed up and go to a Valentine's Banquet with my husband. Some much needed time away from the stress of the past two and half weeks. I am going to pray that the kids stop fighting and can let me have this small thing!
Thursday, February 12, 2009
Faith
"And the rain fell, and the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on the rock." Matthew 7:25.
In my dining room, I have a picture of a house built on a rock near the sea. Underneath the house is the word "faith." Below that is the verse from the Bible. Our family has sure been beaten about by the winds these last few weeks. The rain has fallen, and yet we stand. With God as our rock, we are on a strong foundation. The friends and family he has provided us have kept us on our feet when the storms have fought to knock us down.
I think of the floods as the tears that have been spilt by myself and all those who care about Simon. I can feel the cleansing quality of tears shared with friends. I am comforted to know that I am not alone in this, and indeed, we are never alone.
Today was uneventful, as far as Simon's treatment is concerned. At one point, they tried to increase the rate of the medicine, which resulted in a slight case of the shakes and a rise in his temperature. The temperature only went up to 99.8, and they immediately slowed the medicine down and both side effects stopped.
Today's excitement was of a positive nature. My kids attend the very best school in the entire universe. From the moment I put out the word that we were headed to the ER, they have rallied around Simon and our family. In a show of support, they are organizing a blood drive. The principal put out a press release this morning about the drive, to bring more people in. With in minutes, a local t.v. station had contacted him and wanted to interview Simon, the school, and our family.
This afternoon, Mr. Knapp and the t.v. crew arrived at the clinic. They spent some time taping Simon, and then they interviewed Mr. Knapp, Simon, and myself. The story aired on KKTV news at 5:30. I wasn't home to see it, but I did see the story they posted on their web-site, and later, they also posted the video. I am including a link to the story. They did a beautiful job telling Simon's story.
http://www.kktv.com/home/headlines/39514767.html#
I also want to share the press release, written by Don Knapp, the greatest principal in the world.
Serious Health Condition Strikes Pikes Peak Student—Blood Drive Scheduled Falcon, CO, February 2009 -- Simon Wright, a 5th grade student at Pikes Peak School of Expeditionary Learning went for a routine doctor’s visit about a skin rash, only to discover that a much more serious ailment was lurking in the shadows. After a rush to the emergency room and the cancer center, it was discovered that Simon is suffering from Aplastic Anemia—a potentially fatal condition.
“48 hours can definitely change a life,” is the first thing Cheryl, Simon’s mom, will tell you. In that time span, Simon went from being a healthy 5th grade student, to a child struggling with a serious health condition. The roller coaster of emotions has left the family fatigued, but hopeful.
At first, Simon was scared, and he has had a few panic attacks, but they have been short lived, and he has been in great spirits overall. Cheryl credits her faith along with the support of the school and her church with helping the family remain positive.
Aplastic anemia essentially means that the bone marrow has forgotten how to make blood. Treatment ranges from immune suppression therapy to bone marrow transplants. The condition leaves Simon unable to come to school for several months while he struggles to work through this difficult situation. The major concerns over the next few months will be bleeding and infection. Because of that, he will be very limited on contact with people.
Within the first few days after diagnosis, Simon had surgery to install a port near his heart because of the amount of IVs he will need to have over the next several months. A few days later, he began Immune Therapy that could last up to 6 months and potentially end in bone marrow transplants.The Wright family, with 5 children, has been at fixture at Pikes Peak School for years. The close-knit parent community of the school has gotten solidly behind the family to support them through this crisis. Families are giving rides, making meals, and giving donations.
Simon will need several transfusions while he tries to recover, so the school is hosting a blood drive on April 15th and 16th. Several families and community members will show their support by giving blood on that day. The school is asking that all willing individuals contact the school at 719-522-2580 for details on how to join the blood drive.
As I type this up, the kids are all fast asleep in there beds. Outside, a storm is raging. The snow is coming down. The wind is blowing so hard that the snow is falling sideways. In their slumber, the kids are oblivious to the storm outside, just as I had been to the storm raging within Simon's bones. And yet, the house still stands. I have to have faith that when this storm passes, Simon will still stand, and our family will still stand. Isn't God good?
In my dining room, I have a picture of a house built on a rock near the sea. Underneath the house is the word "faith." Below that is the verse from the Bible. Our family has sure been beaten about by the winds these last few weeks. The rain has fallen, and yet we stand. With God as our rock, we are on a strong foundation. The friends and family he has provided us have kept us on our feet when the storms have fought to knock us down.
I think of the floods as the tears that have been spilt by myself and all those who care about Simon. I can feel the cleansing quality of tears shared with friends. I am comforted to know that I am not alone in this, and indeed, we are never alone.
Today was uneventful, as far as Simon's treatment is concerned. At one point, they tried to increase the rate of the medicine, which resulted in a slight case of the shakes and a rise in his temperature. The temperature only went up to 99.8, and they immediately slowed the medicine down and both side effects stopped.
Today's excitement was of a positive nature. My kids attend the very best school in the entire universe. From the moment I put out the word that we were headed to the ER, they have rallied around Simon and our family. In a show of support, they are organizing a blood drive. The principal put out a press release this morning about the drive, to bring more people in. With in minutes, a local t.v. station had contacted him and wanted to interview Simon, the school, and our family.
This afternoon, Mr. Knapp and the t.v. crew arrived at the clinic. They spent some time taping Simon, and then they interviewed Mr. Knapp, Simon, and myself. The story aired on KKTV news at 5:30. I wasn't home to see it, but I did see the story they posted on their web-site, and later, they also posted the video. I am including a link to the story. They did a beautiful job telling Simon's story.
http://www.kktv.com/home/headlines/39514767.html#
I also want to share the press release, written by Don Knapp, the greatest principal in the world.
Serious Health Condition Strikes Pikes Peak Student—Blood Drive Scheduled Falcon, CO, February 2009 -- Simon Wright, a 5th grade student at Pikes Peak School of Expeditionary Learning went for a routine doctor’s visit about a skin rash, only to discover that a much more serious ailment was lurking in the shadows. After a rush to the emergency room and the cancer center, it was discovered that Simon is suffering from Aplastic Anemia—a potentially fatal condition.
“48 hours can definitely change a life,” is the first thing Cheryl, Simon’s mom, will tell you. In that time span, Simon went from being a healthy 5th grade student, to a child struggling with a serious health condition. The roller coaster of emotions has left the family fatigued, but hopeful.
At first, Simon was scared, and he has had a few panic attacks, but they have been short lived, and he has been in great spirits overall. Cheryl credits her faith along with the support of the school and her church with helping the family remain positive.
Aplastic anemia essentially means that the bone marrow has forgotten how to make blood. Treatment ranges from immune suppression therapy to bone marrow transplants. The condition leaves Simon unable to come to school for several months while he struggles to work through this difficult situation. The major concerns over the next few months will be bleeding and infection. Because of that, he will be very limited on contact with people.
Within the first few days after diagnosis, Simon had surgery to install a port near his heart because of the amount of IVs he will need to have over the next several months. A few days later, he began Immune Therapy that could last up to 6 months and potentially end in bone marrow transplants.The Wright family, with 5 children, has been at fixture at Pikes Peak School for years. The close-knit parent community of the school has gotten solidly behind the family to support them through this crisis. Families are giving rides, making meals, and giving donations.
Simon will need several transfusions while he tries to recover, so the school is hosting a blood drive on April 15th and 16th. Several families and community members will show their support by giving blood on that day. The school is asking that all willing individuals contact the school at 719-522-2580 for details on how to join the blood drive.
As I type this up, the kids are all fast asleep in there beds. Outside, a storm is raging. The snow is coming down. The wind is blowing so hard that the snow is falling sideways. In their slumber, the kids are oblivious to the storm outside, just as I had been to the storm raging within Simon's bones. And yet, the house still stands. I have to have faith that when this storm passes, Simon will still stand, and our family will still stand. Isn't God good?
Wednesday, February 11, 2009
Wednesday Evening Update
The differences between yesterday's treatment and today's treatment is like day and night. No fever, hives, shakes, etc. The biggest issue today was boredom, for which I am very thankful!
Simon has had trouble today with his line getting blocked. They have had to change his filter twice today. Not really a big deal, but just annoying.
Simon also needed lasix to get his bladder to empty. A common side affect of the meds.
While today has not been emotionally draining like yesterday, I am still exhausted. If all goes well tomorrow, Bob will be the one to sit down here with Simon for the afternoon. I am looking forward to hanging out at the school for a bit and attending orchestra. Because Simon's treatments take all day, we are the first patient here in the morning and the last ones to leave at night.
Tonight, we should finish up around 6 and be home before 7. It will be dinner and to bed for this tired mom! Thanks for the prayers!
Simon has had trouble today with his line getting blocked. They have had to change his filter twice today. Not really a big deal, but just annoying.
Simon also needed lasix to get his bladder to empty. A common side affect of the meds.
While today has not been emotionally draining like yesterday, I am still exhausted. If all goes well tomorrow, Bob will be the one to sit down here with Simon for the afternoon. I am looking forward to hanging out at the school for a bit and attending orchestra. Because Simon's treatments take all day, we are the first patient here in the morning and the last ones to leave at night.
Tonight, we should finish up around 6 and be home before 7. It will be dinner and to bed for this tired mom! Thanks for the prayers!
Wednesday Morning Praise Report
Just a quick update. Simon slept well through the night. He is still sleeping as I write this. His fever is completely gone, and his hives are no where to be seen. The pharmacy was finally able to fill his prescription for his oral immune suppressing medication, so he will begin that this morning. 6 pills twice a day. Poor kid is turning into a walking medicine cabinet.
The doctor located Demerol, which works better for the side effects of the treatments. It is an older medicine and less widely used these days, so isn't readily available. Dr. Cook is hoping he doesn't need it, but will be able to get it if Simon's reactions are like they were yesterday.
While the roads coming home last night were snow covered, and the blowing snow made visibility poor, it appears that the storm has passed for now. (The storm raging in my heart yesterday has also subsided.) I know many of my friends were hoping and even praying for a delay in school or a snow day, but I am thankful that neither are necessary. It would have further complicated my already very complicated life.
Thanks for continued prayers. I am praying that today goes better than yesterday and for the strength I need if it doesn't!
The doctor located Demerol, which works better for the side effects of the treatments. It is an older medicine and less widely used these days, so isn't readily available. Dr. Cook is hoping he doesn't need it, but will be able to get it if Simon's reactions are like they were yesterday.
While the roads coming home last night were snow covered, and the blowing snow made visibility poor, it appears that the storm has passed for now. (The storm raging in my heart yesterday has also subsided.) I know many of my friends were hoping and even praying for a delay in school or a snow day, but I am thankful that neither are necessary. It would have further complicated my already very complicated life.
Thanks for continued prayers. I am praying that today goes better than yesterday and for the strength I need if it doesn't!
Tuesday, February 10, 2009
Today's sky has been a reflection of the moods of my heart today. When we left the house this morning, the sky was blue. There wasn't a single cloud in sight. While the temperature was a bit frigid, it was one of those cool, crisp winter days that makes the world feel clean and fresh, full of hope.
In my heart, I felt the same way. Simon's treatments were to begin today. It was a day of hope and joy. We knew it would be a long day. We were told to expect 7 hours from beginning to end. We were prepared for that. We packed books and school work, computers and Simon's MP3 player. I made some sandwiches and packed some snacks. Almost sounds like I was packing for a picnic or a road trip. I guess the treatments were to be a kind of road trip. It was to be the road to recovery.
We arrived at the clinic in good spirits. Simon was feeling good. His blood check showed his levels holding and his hemoglobin actually up a bit. Our spirits remained high. They gave Simon a small amount of the treatment medicine in his arm, to make sure he wouldn't have a bad reaction. Then they gave him benedryl and steroids to prepare his body for the treatments. All signs were good, so the therapy began.
Simon worked on his school work, and we were all getting a bit hungry, so I offered to go and pick up lunch. Simon and I love Thai food, and there is a place not far from here that has the best soup. Bob stayed with Simon.
When I walked outside, I was shocked to see the change in the sky. The sky had gone from clear blue to dark and gray in the short time we were in the clinic. My first thought was how ominous it seemed. I put aside the sinking feeling in my heart and went and got lunch.
When I returned to the clinic, all was well, and I laughed inside at my silliness. We enjoyed our lunch and decided that Bob should pick Warren up and take him home. (Warren only has one class on Tuesdays and Thursdays, so he is done at 10:30.) We didn't know how late we would be at the clinic, and didn't want Warren to have to wait at the bus stop. Bob would be able to take Warren home and wait around until Oliver was done with Orchestra and take him home also. By that time, we should be done at the clinic and all be able to head home.
About 30 minutes after Bob left, Simon started to shake. It was bad. He was shaking violently and couldn't stop. His legs started to hurt. He was hurting and scared. I was holding him and trying to comfort him, but I was scared too. I was praying for the strength to reassure Simon, but how could I reassure him when I was so frightened myself? People keep telling me how strong I am, but I was feeling so very weak.
I called Bob while the nurses were medicating Simon. Bob was already over half way home with Warren. I told him to take Warren home, but to come straight back. Simon wasn't doing well. I was holding Simon, but so needed someone to hold me!
By the time Bob reached home, Simon was stable again. We decided to stick to our original plan of getting Oliver home and then returning for Simon and me.
The last 4.5 hours have been full of ups and downs. The shakes will subside, but then his temperature is over 104. What started as one small spot on his shoulder has spread to huge hives all over his body. As the treatment for the day came to an end, his shaking started up again. This time, the medicine took longer to counter act the affect. Again, his fever was up to 104. It has now dropped to 103.7. Still too high, but it is going down. The hives are fading, put the patichia, are worse. (Patichia are the little red spots that sent us on this journey to begin with, exactly 2 weeks ago today. They are an indicator of low platelets.) Tonight will be rough, needing to administer tylenol and benedryl around the clock.
As I type this, the shaking finally seems to be lessening. His hives are definitely fading. All a good sign, and yet my heart is still clouded with gray.
The last patient they treated with aplastic anemia had a horrible reaction on the first day. The following days were a piece of cake. No more hives, fever, aches, etc. I want to be hopeful, but am afraid. I had not prepared my heart for today. I don't want to let that happen again. Simon needs me to be strong for him.
We are finally home and Simon's fever is completely gone. His hives have faded and no more shakes. He is feeling good, but a bit sleepy. Perhaps we won't have to be up around the clock after all. I can feel the hope creeping back in.
The gray of the day has not faded, but the snow falling from the sky is turning all that is brown and ugly to a beautiful and sparkling white. While my heart is still heavy, I am encouraged. Perhaps tomorrow will bring back the sunshine. Even if it doesn't, the snow reminds me of our precious Savior. I am reminded of our sins being washed whiter than snow. Jesus' blood heals our souls and I continue to pray that He will also heal my son's blood.
In my heart, I felt the same way. Simon's treatments were to begin today. It was a day of hope and joy. We knew it would be a long day. We were told to expect 7 hours from beginning to end. We were prepared for that. We packed books and school work, computers and Simon's MP3 player. I made some sandwiches and packed some snacks. Almost sounds like I was packing for a picnic or a road trip. I guess the treatments were to be a kind of road trip. It was to be the road to recovery.
We arrived at the clinic in good spirits. Simon was feeling good. His blood check showed his levels holding and his hemoglobin actually up a bit. Our spirits remained high. They gave Simon a small amount of the treatment medicine in his arm, to make sure he wouldn't have a bad reaction. Then they gave him benedryl and steroids to prepare his body for the treatments. All signs were good, so the therapy began.
Simon worked on his school work, and we were all getting a bit hungry, so I offered to go and pick up lunch. Simon and I love Thai food, and there is a place not far from here that has the best soup. Bob stayed with Simon.
When I walked outside, I was shocked to see the change in the sky. The sky had gone from clear blue to dark and gray in the short time we were in the clinic. My first thought was how ominous it seemed. I put aside the sinking feeling in my heart and went and got lunch.
When I returned to the clinic, all was well, and I laughed inside at my silliness. We enjoyed our lunch and decided that Bob should pick Warren up and take him home. (Warren only has one class on Tuesdays and Thursdays, so he is done at 10:30.) We didn't know how late we would be at the clinic, and didn't want Warren to have to wait at the bus stop. Bob would be able to take Warren home and wait around until Oliver was done with Orchestra and take him home also. By that time, we should be done at the clinic and all be able to head home.
About 30 minutes after Bob left, Simon started to shake. It was bad. He was shaking violently and couldn't stop. His legs started to hurt. He was hurting and scared. I was holding him and trying to comfort him, but I was scared too. I was praying for the strength to reassure Simon, but how could I reassure him when I was so frightened myself? People keep telling me how strong I am, but I was feeling so very weak.
I called Bob while the nurses were medicating Simon. Bob was already over half way home with Warren. I told him to take Warren home, but to come straight back. Simon wasn't doing well. I was holding Simon, but so needed someone to hold me!
By the time Bob reached home, Simon was stable again. We decided to stick to our original plan of getting Oliver home and then returning for Simon and me.
The last 4.5 hours have been full of ups and downs. The shakes will subside, but then his temperature is over 104. What started as one small spot on his shoulder has spread to huge hives all over his body. As the treatment for the day came to an end, his shaking started up again. This time, the medicine took longer to counter act the affect. Again, his fever was up to 104. It has now dropped to 103.7. Still too high, but it is going down. The hives are fading, put the patichia, are worse. (Patichia are the little red spots that sent us on this journey to begin with, exactly 2 weeks ago today. They are an indicator of low platelets.) Tonight will be rough, needing to administer tylenol and benedryl around the clock.
As I type this, the shaking finally seems to be lessening. His hives are definitely fading. All a good sign, and yet my heart is still clouded with gray.
The last patient they treated with aplastic anemia had a horrible reaction on the first day. The following days were a piece of cake. No more hives, fever, aches, etc. I want to be hopeful, but am afraid. I had not prepared my heart for today. I don't want to let that happen again. Simon needs me to be strong for him.
We are finally home and Simon's fever is completely gone. His hives have faded and no more shakes. He is feeling good, but a bit sleepy. Perhaps we won't have to be up around the clock after all. I can feel the hope creeping back in.
The gray of the day has not faded, but the snow falling from the sky is turning all that is brown and ugly to a beautiful and sparkling white. While my heart is still heavy, I am encouraged. Perhaps tomorrow will bring back the sunshine. Even if it doesn't, the snow reminds me of our precious Savior. I am reminded of our sins being washed whiter than snow. Jesus' blood heals our souls and I continue to pray that He will also heal my son's blood.
Sunday, February 8, 2009
Sunday is a Day of Rest
When God created the earth, He rested on the 7th day. Today was a much needed day of rest for our family.
Simon had a rough night last night. He went to sleep okay, but woke around 1 a.m. crying. He was having nightmares and when he woke up, he was frightened by things imagined in his room. He came to our room and climbed into bed for a short time. Bob took him back to his room and stayed with him until he finally fell back to sleep. It was around 5 a.m.
During the days, I have been amazed by Simon's courage and strength. When I look at him, I have a hard time believing that he is so very ill. Night times are a different story. Simon has always been frightened by the night. He still sleeps with a light on. When the house becomes quiet, his imagination takes over.
It breaks this mother's heart, thinking about what plays in his subconscious. I am thankful for the noise and busyness of the day that is able to drown out the scary thoughts. I wish there were a way to keep away his frightening dreams.
When I returned from church this morning, Simon was just waking up. He was crying, but could not tell me why. After he ate, he started to feel better, but has been tired all day.
As his mother, I so want to be strong for him. I want to comfort him and reassure him that everything will be okay. I am able to remind him of all the people who are praying for him. I remind him that our God is bigger than the boogie man or any of his frightening dreams.
It is so hard to be strong when my baby is hurting, yet strong I must be. I have cried many tears in the past two weeks. I have been more frightened than at any other time in my life.
Yet through it all, God has carried me. He has given me friends to help ease my load. He has been my strength.
God knows how badly we all needed a day of rest, and rest he provided today. Physical rest, but more importantly, emotional rest. Worship at church was upbeat, and ended with communion. (No emotional break downs on my part!) Once Simon was up for a while, he had a good day. He was able to rest, but also to have fun with his puppy.
As bed time is drawing near, Simon is starting to drag. He is losing his color along with his energy. I am trying not to be fearful for what the night holds for him.
Tomorrow will be another day of rest for Simon, before his treatments begin on Tuesday. I will be strengthened by friends tomorrow, preparing me for the 4 long days that will follow. If Simon is still holding up, we will try to make it to orchestra, where we will both be strengthened by music.
As we prepare for bed tonight, I find rest in the knowledge that God is in control. He is watching out for my family, and He knows our every need. He knows that Simon is running on empty. He knows that Simon's mom needs a feeling of peace, and He knows that we all need a night of rest.
Simon had a rough night last night. He went to sleep okay, but woke around 1 a.m. crying. He was having nightmares and when he woke up, he was frightened by things imagined in his room. He came to our room and climbed into bed for a short time. Bob took him back to his room and stayed with him until he finally fell back to sleep. It was around 5 a.m.
During the days, I have been amazed by Simon's courage and strength. When I look at him, I have a hard time believing that he is so very ill. Night times are a different story. Simon has always been frightened by the night. He still sleeps with a light on. When the house becomes quiet, his imagination takes over.
It breaks this mother's heart, thinking about what plays in his subconscious. I am thankful for the noise and busyness of the day that is able to drown out the scary thoughts. I wish there were a way to keep away his frightening dreams.
When I returned from church this morning, Simon was just waking up. He was crying, but could not tell me why. After he ate, he started to feel better, but has been tired all day.
As his mother, I so want to be strong for him. I want to comfort him and reassure him that everything will be okay. I am able to remind him of all the people who are praying for him. I remind him that our God is bigger than the boogie man or any of his frightening dreams.
It is so hard to be strong when my baby is hurting, yet strong I must be. I have cried many tears in the past two weeks. I have been more frightened than at any other time in my life.
Yet through it all, God has carried me. He has given me friends to help ease my load. He has been my strength.
God knows how badly we all needed a day of rest, and rest he provided today. Physical rest, but more importantly, emotional rest. Worship at church was upbeat, and ended with communion. (No emotional break downs on my part!) Once Simon was up for a while, he had a good day. He was able to rest, but also to have fun with his puppy.
As bed time is drawing near, Simon is starting to drag. He is losing his color along with his energy. I am trying not to be fearful for what the night holds for him.
Tomorrow will be another day of rest for Simon, before his treatments begin on Tuesday. I will be strengthened by friends tomorrow, preparing me for the 4 long days that will follow. If Simon is still holding up, we will try to make it to orchestra, where we will both be strengthened by music.
As we prepare for bed tonight, I find rest in the knowledge that God is in control. He is watching out for my family, and He knows our every need. He knows that Simon is running on empty. He knows that Simon's mom needs a feeling of peace, and He knows that we all need a night of rest.
Saturday, February 7, 2009
It's a God Thing.
God just never ceases to amaze me. That fact that this always amazes me is a bit ironic, but it is what it is.
A couple of nights ago, I was on the phone with a friend in another state. It was fun to laugh and share with this special person. He had just gotten his hair cut. Unlike the geeks in this household, this friend is really cool. His hair is always stylish and just plain cool. He knows just how he likes it cut and what color he likes. He is just out right cool. (Not quite sure how we ended up as friends, but I am sure glad we are!) One of the things he told me was that getting his hair done always makes him feel younger.
That got me thinking. I never have my hair done. I just never seem to make the time for it. Not high on my priority list, I suppose. When my hair is driving me nuts, I take a pair of scissors and cut it. It has probably been at least 3 years since I have been to a salon, and even then, I was conservative with my style. I do like getting my hair cut. Since I do it so rarely, it is a luxury, a form of pampering.
Looking ahead to the next couple of months, I am not going to be having a lot of time for me. (Not that I EVER have an abundance of that, being the mother of five, but for a while, I will have none.) Since we have been given a reprieve, being free from appointments for 3 whole days, I decided, "Why not?" A hair cut provided me with some much needed pampering, and a shorter style would be much easier to care for in the busyness that is soon to come.
I called a local salon that I had heard good things about from the ladies at school. I didn't ask for any particular stylist, only if there were any openings for today. I was in luck. There was one appointment open, so I took it and prepared to be pampered.
First stop on my trip was Walmart. I needed to pick up Simon's prescription. I am really anxious to get him going on the oral antibiotic before his treatments start on Tuesday. Delays frustrate me. When I stopped at the pharmacy, the pharmacist informed me that since the office was closed today, she wouldn't be able to verify the dosage until Monday. Then she would fill the prescription on Monday, so Simon would be able to start the meds on Tuesday, the same day his treatments are scheduled to start. She didn't want to talk to the doctor unless he had Simon's chart in front of him. FRUSTRATION!
I called the answering service for the clinic and the nurse practitioner called me back with in 5 minutes. She had been in the office for the last 6 hours, and if the pharmacist had called the service, she could have taken care of it. Now it was too late, as she was already too far to turn around, but she assured me that she would take care of it first thing in the morning. She also assured me that Dr. Cook was following protocol on the dosage and that although the preference would be to get Simon started ahead of treatments, just to give him a head start, the delay in the antibiotics would not delay his immune suppression therapy.
Frustrated, but also reassured, I headed for my hair appointment. The stylist asked what I wanted to do. I explained a little about Simon and told her I wanted something really easy to take care of, but also something that would make me feel better. She asked if we were going to the Child Hematology/ Oncology Center, and if Dr. Cook was Simon's doctor. Surprised, I told her yes.
She lost her daughter to cancer three years ago. Dr. Cook was her daughter's doctor, and she told me that he was the best doctor in the world, and Simon was in very capable hands. Dr. Cook's treatment enabled her to have 6 extra years with her daughter, when the survival rate for her particular cancer, was usually only about a year. As a mom who has been in my position, she was able to relate to what I have been going through. She offered advice and encouragement. She offered support and her phone number if I ever needed someone to talk to. She offered rides for the other kids if needed. She also knows other kids with aplastic anemia who are doing great. She predicted a great outcome for Simon.
As she cut my hair, she ministered to my mother's heart. I made a friend today, and I predict many more trips to the salon. God knew my needs and worked the many details that enabled those needs to be met. From the moment she said Dr. Cook's name, I knew that God had sent me there. I knew it was a God thing.
I have known that God has been working in my life since I accepted Christ on a Young Life retreat in the 8th grade. God has never left me nor forsaken me. Sometimes I have felt very close to Him, and sometimes He has seemed farther away. While I have never turned my back on God, there have been times when I have put our relationship on the back burner. Any distance in our relationship has been entirely of my own doing. I have allowed other things and people to take priority. Even as I type this, I know that it will take me an entire life time to get that relationship right.
I also know that when I look back on my life, it has been during the most difficult times in my life that I have felt closest to God. I guess it is due to the fact that those are the times that I have known, with out a doubt, that I am incapable of doing it on my own. Those are the times that I have allowed myself to be carried.
Never before in my life have I seen so much evidence of God working. Many times a day, I am amazed by yet another God thing.
Simon continues to do well. He is as energetic as ever. As I watch him play and interact with his siblings, I am able to forget, if only for a moment, how seriously ill he is. I know that in the coming weeks, his condition will sap his strength and sickness may indeed take over his body as the doctor tries to restore his bone marrow. But today, I am able to give thanks for his strength and for his health. I am able to thank God for working so visibly in our lives as we face such an uncertain future! I am able to thank God for so many God things!
A couple of nights ago, I was on the phone with a friend in another state. It was fun to laugh and share with this special person. He had just gotten his hair cut. Unlike the geeks in this household, this friend is really cool. His hair is always stylish and just plain cool. He knows just how he likes it cut and what color he likes. He is just out right cool. (Not quite sure how we ended up as friends, but I am sure glad we are!) One of the things he told me was that getting his hair done always makes him feel younger.
That got me thinking. I never have my hair done. I just never seem to make the time for it. Not high on my priority list, I suppose. When my hair is driving me nuts, I take a pair of scissors and cut it. It has probably been at least 3 years since I have been to a salon, and even then, I was conservative with my style. I do like getting my hair cut. Since I do it so rarely, it is a luxury, a form of pampering.
Looking ahead to the next couple of months, I am not going to be having a lot of time for me. (Not that I EVER have an abundance of that, being the mother of five, but for a while, I will have none.) Since we have been given a reprieve, being free from appointments for 3 whole days, I decided, "Why not?" A hair cut provided me with some much needed pampering, and a shorter style would be much easier to care for in the busyness that is soon to come.
I called a local salon that I had heard good things about from the ladies at school. I didn't ask for any particular stylist, only if there were any openings for today. I was in luck. There was one appointment open, so I took it and prepared to be pampered.
First stop on my trip was Walmart. I needed to pick up Simon's prescription. I am really anxious to get him going on the oral antibiotic before his treatments start on Tuesday. Delays frustrate me. When I stopped at the pharmacy, the pharmacist informed me that since the office was closed today, she wouldn't be able to verify the dosage until Monday. Then she would fill the prescription on Monday, so Simon would be able to start the meds on Tuesday, the same day his treatments are scheduled to start. She didn't want to talk to the doctor unless he had Simon's chart in front of him. FRUSTRATION!
I called the answering service for the clinic and the nurse practitioner called me back with in 5 minutes. She had been in the office for the last 6 hours, and if the pharmacist had called the service, she could have taken care of it. Now it was too late, as she was already too far to turn around, but she assured me that she would take care of it first thing in the morning. She also assured me that Dr. Cook was following protocol on the dosage and that although the preference would be to get Simon started ahead of treatments, just to give him a head start, the delay in the antibiotics would not delay his immune suppression therapy.
Frustrated, but also reassured, I headed for my hair appointment. The stylist asked what I wanted to do. I explained a little about Simon and told her I wanted something really easy to take care of, but also something that would make me feel better. She asked if we were going to the Child Hematology/ Oncology Center, and if Dr. Cook was Simon's doctor. Surprised, I told her yes.
She lost her daughter to cancer three years ago. Dr. Cook was her daughter's doctor, and she told me that he was the best doctor in the world, and Simon was in very capable hands. Dr. Cook's treatment enabled her to have 6 extra years with her daughter, when the survival rate for her particular cancer, was usually only about a year. As a mom who has been in my position, she was able to relate to what I have been going through. She offered advice and encouragement. She offered support and her phone number if I ever needed someone to talk to. She offered rides for the other kids if needed. She also knows other kids with aplastic anemia who are doing great. She predicted a great outcome for Simon.
As she cut my hair, she ministered to my mother's heart. I made a friend today, and I predict many more trips to the salon. God knew my needs and worked the many details that enabled those needs to be met. From the moment she said Dr. Cook's name, I knew that God had sent me there. I knew it was a God thing.
I have known that God has been working in my life since I accepted Christ on a Young Life retreat in the 8th grade. God has never left me nor forsaken me. Sometimes I have felt very close to Him, and sometimes He has seemed farther away. While I have never turned my back on God, there have been times when I have put our relationship on the back burner. Any distance in our relationship has been entirely of my own doing. I have allowed other things and people to take priority. Even as I type this, I know that it will take me an entire life time to get that relationship right.
I also know that when I look back on my life, it has been during the most difficult times in my life that I have felt closest to God. I guess it is due to the fact that those are the times that I have known, with out a doubt, that I am incapable of doing it on my own. Those are the times that I have allowed myself to be carried.
Never before in my life have I seen so much evidence of God working. Many times a day, I am amazed by yet another God thing.
Simon continues to do well. He is as energetic as ever. As I watch him play and interact with his siblings, I am able to forget, if only for a moment, how seriously ill he is. I know that in the coming weeks, his condition will sap his strength and sickness may indeed take over his body as the doctor tries to restore his bone marrow. But today, I am able to give thanks for his strength and for his health. I am able to thank God for working so visibly in our lives as we face such an uncertain future! I am able to thank God for so many God things!
Friday, February 6, 2009
Friday, Post Appointment Update
Now that Simon's central line has had a few days to begin the healing process, we were back to the doctor's office. Simon's blood counts are about where they were last Thursday, when we first learned of Aplastic Anemia. His platelets are about half what they were following his transfusion, but still about double what they were when this all started.
The doctor was pleased with the way Simon is healing following the surgery. He expects that to continue to heal. They were able to use his port to do his blood draw and then to administer medicine.
Simon received IV antibiotics, which took a little over an hour. Simon watched a movie and practiced his handwriting while the medicine dripped into his body.
Dr. Cook explained what will happen next. The insurance has approved the treatment, so Simon will be able to be an outpatient. Simon will be given immune supression therapy beginning on Tuesday morning. He will receive 5 vials of serum for 4 days. The process will take about 7 hours each day. The treatments will begin on Tuesday. They can't start on Monday, because they need to get the medicine first. The clinic will be receiving a new shipment on Wednesday and they will be able to borrow enough to get him started on Tuesday.
After next week, Simon will only have to go into the clinic a couple of times a week for blood count checks! Hurray!
In addition, they will do a complete work up of Simon's blood on Tuesday. It will include testing for possible causes of the aplastic anemia, as well as blood panels that will be needed if he needs the bone marrow transplant down the road.
In addition to the antibiotic he received today, he will begin an oral antibiotic tomorrow. When he starts the treatments, steroids will also be taken orally. The steroids are to try to prevent something called serum sickness, which is a condition in which the joints become inflamed and hot and sore. It can be severe enough that the kids need perscription pain medicine to cope. Serum sickness usually just disappears about 10 days following the beginning of treatment.
After the doctor's office, we picked up Oliver and headed to Walmart to pick up Warren and to get Simon's perscription filled. Then we ran into a brick wall, so to speak, or at least that is what if felt like at the time. Because Simon will need to take 8 pills, twice a day, for 28 days, the pharmacy didn't have enough pills. They didn't even have enough pills to get him through the week-end. The pharmacist called the other 2 pharmacies in the area. One was out completely and the other was also so low on supply that they wouldn't be able to get Simon through until Monday.
Then the pharmacist began calling all over town to find someone one who had enough for the week-end. 7 calls later, she finally found enough for the week-end, but it was clear across town, about 40 miles away. She was going to transfer the perscription and we would pick it up first thing tomorrow morning.
As I am typing this, the phone rings, and it is the pharmacist and they need a diagnosis. Apparently, there are 2 versions of this medicine and she isn't sure which one the doctor wants. She then called the on call doctor and it is determined that Simon could start the medicine on Sunday, so we won't have to make the long drive after all. We can pick up what she has tomorrow and start Simon on Monday. Then the phone rings a third time. Apparently, the pharmacist is concerned about such a high dosage for such a small child. She wants to verify the strenghth before she fills the perscription. She will try to take care of that first thing in the morning. If she cannot, we will have to wait for Monday to start the medicine.
I have a lot of observations that I want to get out of my head, but it has been a very long day, and the house is noisy, so they will have to wait for another day.
Thanks so much for continued prayers and support. I couldn't cope without it!
The doctor was pleased with the way Simon is healing following the surgery. He expects that to continue to heal. They were able to use his port to do his blood draw and then to administer medicine.
Simon received IV antibiotics, which took a little over an hour. Simon watched a movie and practiced his handwriting while the medicine dripped into his body.
Dr. Cook explained what will happen next. The insurance has approved the treatment, so Simon will be able to be an outpatient. Simon will be given immune supression therapy beginning on Tuesday morning. He will receive 5 vials of serum for 4 days. The process will take about 7 hours each day. The treatments will begin on Tuesday. They can't start on Monday, because they need to get the medicine first. The clinic will be receiving a new shipment on Wednesday and they will be able to borrow enough to get him started on Tuesday.
After next week, Simon will only have to go into the clinic a couple of times a week for blood count checks! Hurray!
In addition, they will do a complete work up of Simon's blood on Tuesday. It will include testing for possible causes of the aplastic anemia, as well as blood panels that will be needed if he needs the bone marrow transplant down the road.
In addition to the antibiotic he received today, he will begin an oral antibiotic tomorrow. When he starts the treatments, steroids will also be taken orally. The steroids are to try to prevent something called serum sickness, which is a condition in which the joints become inflamed and hot and sore. It can be severe enough that the kids need perscription pain medicine to cope. Serum sickness usually just disappears about 10 days following the beginning of treatment.
After the doctor's office, we picked up Oliver and headed to Walmart to pick up Warren and to get Simon's perscription filled. Then we ran into a brick wall, so to speak, or at least that is what if felt like at the time. Because Simon will need to take 8 pills, twice a day, for 28 days, the pharmacy didn't have enough pills. They didn't even have enough pills to get him through the week-end. The pharmacist called the other 2 pharmacies in the area. One was out completely and the other was also so low on supply that they wouldn't be able to get Simon through until Monday.
Then the pharmacist began calling all over town to find someone one who had enough for the week-end. 7 calls later, she finally found enough for the week-end, but it was clear across town, about 40 miles away. She was going to transfer the perscription and we would pick it up first thing tomorrow morning.
As I am typing this, the phone rings, and it is the pharmacist and they need a diagnosis. Apparently, there are 2 versions of this medicine and she isn't sure which one the doctor wants. She then called the on call doctor and it is determined that Simon could start the medicine on Sunday, so we won't have to make the long drive after all. We can pick up what she has tomorrow and start Simon on Monday. Then the phone rings a third time. Apparently, the pharmacist is concerned about such a high dosage for such a small child. She wants to verify the strenghth before she fills the perscription. She will try to take care of that first thing in the morning. If she cannot, we will have to wait for Monday to start the medicine.
I have a lot of observations that I want to get out of my head, but it has been a very long day, and the house is noisy, so they will have to wait for another day.
Thanks so much for continued prayers and support. I couldn't cope without it!
Thursday, February 5, 2009
Talking in the third person.
This post is a bit rambling and I appologize if it makes no sense. I was very tired when I wrote it and just needed to get some thoughts out of my head. Hopefully, my next post will make more sense!
Although I have only been a member of the facebook family for a few short months, I will admit that I tend to spend a lot of time facebooking. I even switched phone carriers and got myself a new phone so that I can take facebook with me where ever I go. Some might even say I am addicted to facebook, and I would be hard pressed to prove them wrong. My children sigh, and my husband just rolls his eyes. What is it that has so captured my interest that I have a hard time walking away?
One of the things about facebook that I found a bit confusing and actually down right strange in my early days was the way we talk in the third person. Cheryl is tired. Cheryl has had a rough day. Cheryl wants to escape.
Tonight, as I was frantically searching for my medicine, I had a flash of wisdom. (No idea what the connection between the two is.) Talking in the third person allows me to detach from a tough situation. If I talk about Cheryl, I am distancing myself from what ever it is that I am trying to deal with. I am not the one crying because I am tired and need to find that silly bottle before I can go to sleep. That is Cheryl's problem. It is not my children who are constantly bickering or arguing with their dad. Those are Cheryl's children.
From the beginning, I was drawn to facebook as an outlet. It gave me a safe place to vent. I could take out my frustrations at the keyboard, instead of on my kids. I could laugh at the absurdity of a situation that would normally have me flustered.
Facebook allowed this normally shy and reserved person to open up and let people into my life. I learned things about people I see everyday, but never really got to know. As I learned about those people and they learned about me, acquaintances became friends. Walls have fallen down as I have poured out my heart on rough days, and rather than being scorned, people have reached out to me and encouraged me.
It was from my phone in the ER last week that I put out the distress call, using facebook. By the end of the day, there were people all over the country praying for Simon and holding our family up in prayer. As the day unfolded, my cryptic postings became frantic pleas. Third person musings could not detach me from the horror I was facing, but they were able to notify others of what was happening.
Simon woke up grumpy this morning. What a joy that was for me! He had the energy to be a crab! After he had eaten, his mood greatly improved. I was able to take advantage of the reprieve and took the day off, so to speak. (In other words, I hung out at the school.) Simon stayed home with his dad.
When I got home, it was a third person kind of night. I almost turned around and walked back out the door. Simon was in a rage, because someone had finished off the salad. Warren, 17, and Beau, 5, were fighting over whether or not the fan should be on. Bob and grandma were both ready to be done with the kids, and each other. I was frantically looking for a rock to hide under or a hole to crawl into! In other words, our family was back to normal. In the midst of it all, I sure wasn't happy, but looking at it from the 3rd person point of view, there was relief.
Today was probably as close to normal as our lives are going to be for at least the next few months. I have made arrangements for the other children for tomorrow, as Simon has his pre-therapy appointment. He will recieve an IV antibiotic. The process should take about 1.5 hours. We all have a bacteria that lives in our lungs. In people with supressed immune systems, this bacteria can go haywire, becoming overgrown and causing severe pnemonia. This is often the cause of death in people with AIDS. The antibiotic Simon will recieve specifically targets that bacteria.
Although I have only been a member of the facebook family for a few short months, I will admit that I tend to spend a lot of time facebooking. I even switched phone carriers and got myself a new phone so that I can take facebook with me where ever I go. Some might even say I am addicted to facebook, and I would be hard pressed to prove them wrong. My children sigh, and my husband just rolls his eyes. What is it that has so captured my interest that I have a hard time walking away?
One of the things about facebook that I found a bit confusing and actually down right strange in my early days was the way we talk in the third person. Cheryl is tired. Cheryl has had a rough day. Cheryl wants to escape.
Tonight, as I was frantically searching for my medicine, I had a flash of wisdom. (No idea what the connection between the two is.) Talking in the third person allows me to detach from a tough situation. If I talk about Cheryl, I am distancing myself from what ever it is that I am trying to deal with. I am not the one crying because I am tired and need to find that silly bottle before I can go to sleep. That is Cheryl's problem. It is not my children who are constantly bickering or arguing with their dad. Those are Cheryl's children.
From the beginning, I was drawn to facebook as an outlet. It gave me a safe place to vent. I could take out my frustrations at the keyboard, instead of on my kids. I could laugh at the absurdity of a situation that would normally have me flustered.
Facebook allowed this normally shy and reserved person to open up and let people into my life. I learned things about people I see everyday, but never really got to know. As I learned about those people and they learned about me, acquaintances became friends. Walls have fallen down as I have poured out my heart on rough days, and rather than being scorned, people have reached out to me and encouraged me.
It was from my phone in the ER last week that I put out the distress call, using facebook. By the end of the day, there were people all over the country praying for Simon and holding our family up in prayer. As the day unfolded, my cryptic postings became frantic pleas. Third person musings could not detach me from the horror I was facing, but they were able to notify others of what was happening.
Simon woke up grumpy this morning. What a joy that was for me! He had the energy to be a crab! After he had eaten, his mood greatly improved. I was able to take advantage of the reprieve and took the day off, so to speak. (In other words, I hung out at the school.) Simon stayed home with his dad.
When I got home, it was a third person kind of night. I almost turned around and walked back out the door. Simon was in a rage, because someone had finished off the salad. Warren, 17, and Beau, 5, were fighting over whether or not the fan should be on. Bob and grandma were both ready to be done with the kids, and each other. I was frantically looking for a rock to hide under or a hole to crawl into! In other words, our family was back to normal. In the midst of it all, I sure wasn't happy, but looking at it from the 3rd person point of view, there was relief.
Today was probably as close to normal as our lives are going to be for at least the next few months. I have made arrangements for the other children for tomorrow, as Simon has his pre-therapy appointment. He will recieve an IV antibiotic. The process should take about 1.5 hours. We all have a bacteria that lives in our lungs. In people with supressed immune systems, this bacteria can go haywire, becoming overgrown and causing severe pnemonia. This is often the cause of death in people with AIDS. The antibiotic Simon will recieve specifically targets that bacteria.
Give Thanks, A Continuation of My Previous Post
"Simon is running out of blood, and his body isn't making any more." Give thanks. "They will place their hands on sick people, and they will get well." Mark 16:18b. I also find courage in James 4:15a, "And the prayer offered in faith will make the sick person well; the Lord will raise him up."
A child of Simon's age and size should have 50-70% bone marrow. Simon has 5%. Give thanks. "Then Jesus answered and said unto her, 'O woman, great is thy faith: be it unto thee even as thou wilt.' And her daughter was made whole from that very hour." Matthew 15:28.
"Things are going to get a whole lot worse before, hopefully, they get better." Give thanks. "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving make your requests known to God." Philippians 4:6. Also Job 6:8 "Oh, that I might have my request, that God would grant what I hope for."
"In an attempt to cure your son, we are going to totally wipe out his immune system, which may kill him." Give thanks. "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." Psalm 23:4a.
"In spite of you great health insurance, the co-pays on the medications alone may wipe you out financially." Give thanks. "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future." God has already worked mightely in this area in the past week. First through the generosity of a church to see that our oven is repaired. Next through the generosity of strangers who have created foundations to help with the financial burdens of co-pays for medicines, doctor's visits, and hospital stays.
On the day of Simon's surgery, I received a call from the propane company. We use propane to heat our water, operate our stove, and also to heat our home. Because the price of propane has dropped so much since last summer, and because we have had such a mild winter, we have about 5 months worth of credit on our account. One less bill to have to take care of while we go through this ordeal. I say because of God!
"Treatments will involve days spending 5 or more days a week, 8 hours a day, at the clinic, and/or lengthy hospital stays" Give thanks. "You will be secure, because there is hope; you will look about you and take your rest in safety." Job 11:18. "Find rest, o my soul, in God alone; my hope comes from him." Psalm 62:5.
How am I going to not only care for and comfort Simon, but also tend to the needs of my other 4 children at home?
Matthew 6:26 tells us "Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly father feeds them. Are you not much more valuable than they?" The generosity of friends and aquantances in providing food for my family has been over whelming. We first learned of Simon's illness on Wednesday, and we have had an evening meal every day since then, provided by the blessings of others. While at the hospital or treatment center, I do not have to worry about what to feed the kids when I get home. That worry has been removed from my shoulder's completely. I have also been over whelmed by people willing to provide rides for my kids and help in any other area we might have a need.
In church on Sunday, we sang a song about blood and the healing power of the blood of Christ. My son is out of blood. Give thanks. In 3 days, he received 2 blood transfusions. One of platelets, so they could procede with the the surgery to install the central line needed for his treatments, which will begin next week. Without that transfusion, he would have lost too much of what little blood he has left. Then he received a unit of red blood to give him the strength to make it through the day.
I am thankful for the freedom to cry. Thankful for the soul cleansing blood of the lamb that never runs dry. Thankful that God has turned my mourning into dancing. "You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy." Psalm 30:11.
I am thankful that Simon's physical strength was renewed through the blood, and my strength is being renewed daily through God and his promises in the Bible and the help of friends. "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not faint." Isaiah 40:31.
"Severe Aplastic Anemia." Give thanks. "Thou wilt keep him in perfect peace whose mind is stayed on thee: because he trusteth in thee."
A child of Simon's age and size should have 50-70% bone marrow. Simon has 5%. Give thanks. "Then Jesus answered and said unto her, 'O woman, great is thy faith: be it unto thee even as thou wilt.' And her daughter was made whole from that very hour." Matthew 15:28.
"Things are going to get a whole lot worse before, hopefully, they get better." Give thanks. "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving make your requests known to God." Philippians 4:6. Also Job 6:8 "Oh, that I might have my request, that God would grant what I hope for."
"In an attempt to cure your son, we are going to totally wipe out his immune system, which may kill him." Give thanks. "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me." Psalm 23:4a.
"In spite of you great health insurance, the co-pays on the medications alone may wipe you out financially." Give thanks. "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future." God has already worked mightely in this area in the past week. First through the generosity of a church to see that our oven is repaired. Next through the generosity of strangers who have created foundations to help with the financial burdens of co-pays for medicines, doctor's visits, and hospital stays.
On the day of Simon's surgery, I received a call from the propane company. We use propane to heat our water, operate our stove, and also to heat our home. Because the price of propane has dropped so much since last summer, and because we have had such a mild winter, we have about 5 months worth of credit on our account. One less bill to have to take care of while we go through this ordeal. I say because of God!
"Treatments will involve days spending 5 or more days a week, 8 hours a day, at the clinic, and/or lengthy hospital stays" Give thanks. "You will be secure, because there is hope; you will look about you and take your rest in safety." Job 11:18. "Find rest, o my soul, in God alone; my hope comes from him." Psalm 62:5.
How am I going to not only care for and comfort Simon, but also tend to the needs of my other 4 children at home?
Matthew 6:26 tells us "Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly father feeds them. Are you not much more valuable than they?" The generosity of friends and aquantances in providing food for my family has been over whelming. We first learned of Simon's illness on Wednesday, and we have had an evening meal every day since then, provided by the blessings of others. While at the hospital or treatment center, I do not have to worry about what to feed the kids when I get home. That worry has been removed from my shoulder's completely. I have also been over whelmed by people willing to provide rides for my kids and help in any other area we might have a need.
In church on Sunday, we sang a song about blood and the healing power of the blood of Christ. My son is out of blood. Give thanks. In 3 days, he received 2 blood transfusions. One of platelets, so they could procede with the the surgery to install the central line needed for his treatments, which will begin next week. Without that transfusion, he would have lost too much of what little blood he has left. Then he received a unit of red blood to give him the strength to make it through the day.
I am thankful for the freedom to cry. Thankful for the soul cleansing blood of the lamb that never runs dry. Thankful that God has turned my mourning into dancing. "You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy." Psalm 30:11.
I am thankful that Simon's physical strength was renewed through the blood, and my strength is being renewed daily through God and his promises in the Bible and the help of friends. "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not faint." Isaiah 40:31.
"Severe Aplastic Anemia." Give thanks. "Thou wilt keep him in perfect peace whose mind is stayed on thee: because he trusteth in thee."
Wednesday, February 4, 2009
The Morning After the Second Night in the Hospital, Wednesday, February 4, 2009
Yesterday, when I was writing my updates, I was called away. Simon was out of surgery and they wanted me in the recovery room when he woke up. By the time we made our way through the maze of hallways that is Memorial Central Hospital, he was already awake, although sleepy. His spirits were high and his stomach was hungry!
The remainder of the day was uneventful. There was a little concern over a bit of swelling near the site of the implant, but the surgery went very well. He was out in less than an hour. The swelling continued to go down and everything else looks good. Simon was a bit sore, but mostly when he moved around much. The hardest part for him was the waiting to be allowed to eat! The surgeon wanted to make sure the swelling was indeed going down before Simon got the okay for food, just in case they needed to go back into surgery.
Yesterday was a day of waiting. Waiting for surgery to start. Waiting for surgery to be over. Waiting for food. Waiting for the doctor. Waiting to see what the family doctor said about Beau. Waiting to decide how that call would affect Simon's hospital stay. Waiting for blood counts. Waiting for medicines. Waiting for the final checks of the evening to be over, so both Simon and I could get some much needed sleep.
While my slumber wasn't quite long enough, what I did get was deep and restoring. I feel much better prepared for today. Simon is still sleeping! The nurse came in around 5:30 and took his blood draw. She was able to go in through the IV site and he slept through the whole thing!
Yesterday, I had started to write about strength from Bible verses. I will get back to that, but right now, I need to talk about a verse that has been playing over in my mind that I have really been struggling with. 1 Thessalonials 5:18 says, "Give thanks in all circumstances, for this is God's will for you in Christ Jesus."
People see in me strength. They admire my faith. They don't realize how my heart has been railing against God this past week. (Hard to believe that today it is exactly one week from the day we were told that our precious Simon was very ill.)
"Your child may have leukemia or lymphoma." Give thanks.
"Your child doesn't have leukemia, but what he does have is just as serious." Give thanks.
"Simon is out of school at least until after spring break." Give thanks.
"Simon is running out of blood, and his body isn't making any more." Give thanks.
A child of Simon's age and size should have 50-70% bone marrow. Simon has 5%. Give thanks.
"Things are going to get a whole lot worse before, hopefully, they get better." Give thanks.
"In an attempt to cure your son, we are going to totally wipe out his immune system, which may kill him." Give thanks.
"In spite of you great health insurance, the co-pays on the medications alone may wipe you out financially." Give thanks.
"Treatments will involve days spending 5 or more days a week, 8 hours a day, at the clinic, and/or lengthy hospital stays" Give thanks.
In church, we sing a song about blood and the healing power of blood. My son is out of blood. He has already had a transfusion of platelets and of red blood cells. Give thanks.
"Severe Aplastic Anemia." Give thanks.
How God? How is this possible? How can I be thankful for any of this? And yet, the voice keeps repeating "give thanks in ALL circumstances." I can't do it. I haven't either the strength or the will. I want to turn the voice off, but the mute button for thoughts in my head doesn't work. How can I find the silver lining in these darkest of clouds we are under?
"Your child may have leukemia or lymphoma." Give thanks. I am giving thanks to my God, who "forgives all your sins and heals all your diseases." Psalm 103:3
"Your child doesn't have leukemia, but what he does have is just as serious." Give thanks. I am giving thanks to my God whose name is a strong tower. The righteous run into it and they are safe. Proverbs 18:10
"Simon is out of school at least until after spring break." Give thanks. "Teach them to your children, talking about them when you sit at home and when you walk along the road, when you lie down and when you get up." Deuteronomy 11:19. Simon and I are going to have some one on one time, and I LOVE teaching my kids. I wouldn't trade their school for the world, but I am excited to have the opportunity to study along Simon and watch him grow in wisdom and knowledge over the next couple of months.
What I wrote after this point was lost when the computer froze up, but I hope to be able to finish this tomorrow. For now, I am thankful that I will be able to sleep in my own bed while Simon sleeps in his. Give thanks.
The remainder of the day was uneventful. There was a little concern over a bit of swelling near the site of the implant, but the surgery went very well. He was out in less than an hour. The swelling continued to go down and everything else looks good. Simon was a bit sore, but mostly when he moved around much. The hardest part for him was the waiting to be allowed to eat! The surgeon wanted to make sure the swelling was indeed going down before Simon got the okay for food, just in case they needed to go back into surgery.
Yesterday was a day of waiting. Waiting for surgery to start. Waiting for surgery to be over. Waiting for food. Waiting for the doctor. Waiting to see what the family doctor said about Beau. Waiting to decide how that call would affect Simon's hospital stay. Waiting for blood counts. Waiting for medicines. Waiting for the final checks of the evening to be over, so both Simon and I could get some much needed sleep.
While my slumber wasn't quite long enough, what I did get was deep and restoring. I feel much better prepared for today. Simon is still sleeping! The nurse came in around 5:30 and took his blood draw. She was able to go in through the IV site and he slept through the whole thing!
Yesterday, I had started to write about strength from Bible verses. I will get back to that, but right now, I need to talk about a verse that has been playing over in my mind that I have really been struggling with. 1 Thessalonials 5:18 says, "Give thanks in all circumstances, for this is God's will for you in Christ Jesus."
People see in me strength. They admire my faith. They don't realize how my heart has been railing against God this past week. (Hard to believe that today it is exactly one week from the day we were told that our precious Simon was very ill.)
"Your child may have leukemia or lymphoma." Give thanks.
"Your child doesn't have leukemia, but what he does have is just as serious." Give thanks.
"Simon is out of school at least until after spring break." Give thanks.
"Simon is running out of blood, and his body isn't making any more." Give thanks.
A child of Simon's age and size should have 50-70% bone marrow. Simon has 5%. Give thanks.
"Things are going to get a whole lot worse before, hopefully, they get better." Give thanks.
"In an attempt to cure your son, we are going to totally wipe out his immune system, which may kill him." Give thanks.
"In spite of you great health insurance, the co-pays on the medications alone may wipe you out financially." Give thanks.
"Treatments will involve days spending 5 or more days a week, 8 hours a day, at the clinic, and/or lengthy hospital stays" Give thanks.
In church, we sing a song about blood and the healing power of blood. My son is out of blood. He has already had a transfusion of platelets and of red blood cells. Give thanks.
"Severe Aplastic Anemia." Give thanks.
How God? How is this possible? How can I be thankful for any of this? And yet, the voice keeps repeating "give thanks in ALL circumstances." I can't do it. I haven't either the strength or the will. I want to turn the voice off, but the mute button for thoughts in my head doesn't work. How can I find the silver lining in these darkest of clouds we are under?
"Your child may have leukemia or lymphoma." Give thanks. I am giving thanks to my God, who "forgives all your sins and heals all your diseases." Psalm 103:3
"Your child doesn't have leukemia, but what he does have is just as serious." Give thanks. I am giving thanks to my God whose name is a strong tower. The righteous run into it and they are safe. Proverbs 18:10
"Simon is out of school at least until after spring break." Give thanks. "Teach them to your children, talking about them when you sit at home and when you walk along the road, when you lie down and when you get up." Deuteronomy 11:19. Simon and I are going to have some one on one time, and I LOVE teaching my kids. I wouldn't trade their school for the world, but I am excited to have the opportunity to study along Simon and watch him grow in wisdom and knowledge over the next couple of months.
What I wrote after this point was lost when the computer froze up, but I hope to be able to finish this tomorrow. For now, I am thankful that I will be able to sleep in my own bed while Simon sleeps in his. Give thanks.
This and That, Morning of Surgery, Tuesday, February 3, 2009
It is early Tuesday morning, and it has been a VERY long night. I am functioning, or at least trying to, on a couple hours sleep. Poor Simon slept even less.
They came in around 11 last night with the platelets to ready Simon for today's surgery. Around midnight, Simon started tossing and turning and crying, because his IV sight hurt. The nurse checked it and gave him a warm blanket to put on it, but said everything was okay with it. The warmth helped a little, but he has been mostly awake since then. Around 5:30, they came and took his blood to make sure his platelets are high enough for the surgery, which is scheduled for 7.
There are so many thoughts tumbling through my head and I would like to put some of them to paper.
Strength in weakness has been at the forefront of my thoughts these last few days. I have never seen myself as a strong person. Physically, I have always been weak. Emotionally, I often feel more like a jelly fish than a shark. Spiritually, I seem to spend far more time down in the valleys of despair than up on the mountain tops of joy.
I have been amazed over this past week at how many people have made comments about my strength. When people say that, and I feel like a part of me is dying inside from my lack of strength, it causes me to ponder. What are people seeing that I am unable to see and certainly do not feel? I tend to be a person who wears her heart upon her sleeve, and so this whole concept leaves me puzzled.
I am also a person who cannot walk away from a puzzle. It has been turning around in my mind as I have been going about my daily tasks, and I believe that while I have yet to complete the puzzle, I have made a good start.
When I wrote my note about the power of we, a friend told me of a saying the Italians have. It is "Io chi siamo." Translated, it means "The I that we are." What a beautiful and powerful phrase. I have turned it around in my mind to be the we that I am. As one, I am week. I had my feet knocked out from under me last week, and yet I did not fall. How is it possible to remain standing when this occurred?
"My strength comes from the Lord," is often heard in Christian circles and is so very true, but what does that really mean? How does He provide that strength? I never fully understood, but this past week, I have been given a very clear picture.
My strength is in the "we" that have surrounded me and my family. From the friend who told me that "we" would get through this, to the friends who have taken care of my family's physical needs by providing meals, to the friend clear across the country who reminded me that he was with me, holding my hand through yesterday, to the friend who took the time to drive clear across town to sit with me while Simon is in surgery, to the pastor who has come and held us up spiritually through the first trip to the ER when we first heard the devastating words and the friends and strangers all across the country who are storming the gates of heaven on Simon's behalf. (I love the picture of strength that phrase places in my mind!)
Strength comes from knowing that though I weep, I do not weep alone. The staff and teachers at the school who have been crying right along side of me has given me strength. The freedom to let the tears flow during corporate worship at the church and have people put their arms around me and literally hold me up. I am reminded of a massive dam that holds back the power of the river. The sheer strength of the flowing water powers our homes. I feel that tears also have strength in their release. The friends who allow me to open those flood gates and let the tears flow give me strength.
I am able to still stand because of the friends who are holding me up off of the ground. I see a vision of being surrounded by hands of friends nearby and far away carrying me across the rocky ground.
Strength comes from strangers. From the members of a church who have reached out to care for the physical needs of the family by taking care of our stove that isn't working. Handling those details so I have one less thing to weigh me down. The stranger who had a bumper sticker on their car as I headed home from the clinic yesterday. "Relax, God is in control." The receptionist that told me of the foundations available to help us with the financials of Simon's condition, for while we have insurance, there will be overwhelming co-pays for office visits and medicines. The strangers all over the country who heard the news and are lifting Simon up.
Then there are the promises in the Bible that people have been sending me to hide in my heart through this ordeal.
They came in around 11 last night with the platelets to ready Simon for today's surgery. Around midnight, Simon started tossing and turning and crying, because his IV sight hurt. The nurse checked it and gave him a warm blanket to put on it, but said everything was okay with it. The warmth helped a little, but he has been mostly awake since then. Around 5:30, they came and took his blood to make sure his platelets are high enough for the surgery, which is scheduled for 7.
There are so many thoughts tumbling through my head and I would like to put some of them to paper.
Strength in weakness has been at the forefront of my thoughts these last few days. I have never seen myself as a strong person. Physically, I have always been weak. Emotionally, I often feel more like a jelly fish than a shark. Spiritually, I seem to spend far more time down in the valleys of despair than up on the mountain tops of joy.
I have been amazed over this past week at how many people have made comments about my strength. When people say that, and I feel like a part of me is dying inside from my lack of strength, it causes me to ponder. What are people seeing that I am unable to see and certainly do not feel? I tend to be a person who wears her heart upon her sleeve, and so this whole concept leaves me puzzled.
I am also a person who cannot walk away from a puzzle. It has been turning around in my mind as I have been going about my daily tasks, and I believe that while I have yet to complete the puzzle, I have made a good start.
When I wrote my note about the power of we, a friend told me of a saying the Italians have. It is "Io chi siamo." Translated, it means "The I that we are." What a beautiful and powerful phrase. I have turned it around in my mind to be the we that I am. As one, I am week. I had my feet knocked out from under me last week, and yet I did not fall. How is it possible to remain standing when this occurred?
"My strength comes from the Lord," is often heard in Christian circles and is so very true, but what does that really mean? How does He provide that strength? I never fully understood, but this past week, I have been given a very clear picture.
My strength is in the "we" that have surrounded me and my family. From the friend who told me that "we" would get through this, to the friends who have taken care of my family's physical needs by providing meals, to the friend clear across the country who reminded me that he was with me, holding my hand through yesterday, to the friend who took the time to drive clear across town to sit with me while Simon is in surgery, to the pastor who has come and held us up spiritually through the first trip to the ER when we first heard the devastating words and the friends and strangers all across the country who are storming the gates of heaven on Simon's behalf. (I love the picture of strength that phrase places in my mind!)
Strength comes from knowing that though I weep, I do not weep alone. The staff and teachers at the school who have been crying right along side of me has given me strength. The freedom to let the tears flow during corporate worship at the church and have people put their arms around me and literally hold me up. I am reminded of a massive dam that holds back the power of the river. The sheer strength of the flowing water powers our homes. I feel that tears also have strength in their release. The friends who allow me to open those flood gates and let the tears flow give me strength.
I am able to still stand because of the friends who are holding me up off of the ground. I see a vision of being surrounded by hands of friends nearby and far away carrying me across the rocky ground.
Strength comes from strangers. From the members of a church who have reached out to care for the physical needs of the family by taking care of our stove that isn't working. Handling those details so I have one less thing to weigh me down. The stranger who had a bumper sticker on their car as I headed home from the clinic yesterday. "Relax, God is in control." The receptionist that told me of the foundations available to help us with the financials of Simon's condition, for while we have insurance, there will be overwhelming co-pays for office visits and medicines. The strangers all over the country who heard the news and are lifting Simon up.
Then there are the promises in the Bible that people have been sending me to hide in my heart through this ordeal.
First Hospital Stay, Monday, February 2, 2009
It is Monday night, and we are in the hospital for what is to be the first of many stays in the coming months. I am unable to post to my blog, due to hospital filtering, so I figured I better at least write a quick note to update everyone.
At the doctor's office today, we got the results of the test on the bone core they removed from Simon on Thursday. It is official. Simon has Severe Aplastic Anemia. A normal bone in a child of Simon's size and age, there should be 50-70% marrow. Simon's bone only has 5%.
Tonight, we checked into the hospital, where they are preparing to give Simon some platelets in preparation for tomorrow's surgery. Simon will have a port put in under the skin on his chest. This will enable the doctors to have access to his blood without having to put in an IV every visit. It is also called a central line. Because his platelets are low, they need to boost those before surgery so he doesn't bleed. The procedure is normally an outpatient surgery, but Simon needs extra care because of the aplastic anemia. Even the platelets he will receive are extra treated to protect him. If all goes well, he will be able to go home tomorrow evening.
Next comes a few days of waiting to allow for heeling. On Friday, we will return to the clinic, where Simon will receive a special IV antibiotic. That will take approximately 1.5 hours, then home for the week-end.
His actual immune suppression therapy will begin one week from today. The ideal is for him to be treated as an outpatient at the clinic. The other option is 5-7 days in hospital. The doctor prefers the clinic, because Simon will be very vulnerable to infection and illness, and people who are in the hospital are sick. In the clinic, they have more control over who is allowed in. Wether he is inpatient or outpatient will be decided by the insurance.
As an outpatient, Simon will be at the clinic every morning at 9:30 and go home around 5:00. The goal of the treatments is to wipe out his t-cells, so that his body can grow healthy ones back. The first 2 weeks of treatment could be rough. Some kids have a reaction called serum syndrome. It causes painful and swollen joints. He will be given steroids to try to avoid that or at least minimize its effect. After the first 2 weeks, that usually goes away.
Sometime during the first month of treatment, the other 4 kids will have their blood tested to see if they are a match in the event of a bone marrow transplant. If Simon is improving with the immune therapy, that can be carried out for up to 6 months, but they usually only go 1-3 months. If there is little or no improvement, they will begin the process for the bone marrow transplant. The transplant would take place up in Denver.
The major concerns over the next few months will be bleeding and infection. Because of that, he will be very limited on contact with people. School will be out, as will any place with large numbers of people. He will be allowed visitors, as long as they are free from colds or any other illnesses. Also, small gatherings of people would be okay, as long as no one is sick. He will be able to attend church, and orchestra should be okay, since we are a small orchestra and kids who are sick don't attend.
Last night, Simon was scared, and this morning he had a panic attack, but it was short lived, and he has been in great spirits since then. He did great when they put his IV in tonight, and he is now sleeping.
Thank you all for your continued prayers and support. Simon is very encouraged by the fact that he has people all across the country praying for him.
I have so many thoughts that I need to get out of my head and onto the paper, but I am exhausted, so they will have to wait until tomorrow.
At the doctor's office today, we got the results of the test on the bone core they removed from Simon on Thursday. It is official. Simon has Severe Aplastic Anemia. A normal bone in a child of Simon's size and age, there should be 50-70% marrow. Simon's bone only has 5%.
Tonight, we checked into the hospital, where they are preparing to give Simon some platelets in preparation for tomorrow's surgery. Simon will have a port put in under the skin on his chest. This will enable the doctors to have access to his blood without having to put in an IV every visit. It is also called a central line. Because his platelets are low, they need to boost those before surgery so he doesn't bleed. The procedure is normally an outpatient surgery, but Simon needs extra care because of the aplastic anemia. Even the platelets he will receive are extra treated to protect him. If all goes well, he will be able to go home tomorrow evening.
Next comes a few days of waiting to allow for heeling. On Friday, we will return to the clinic, where Simon will receive a special IV antibiotic. That will take approximately 1.5 hours, then home for the week-end.
His actual immune suppression therapy will begin one week from today. The ideal is for him to be treated as an outpatient at the clinic. The other option is 5-7 days in hospital. The doctor prefers the clinic, because Simon will be very vulnerable to infection and illness, and people who are in the hospital are sick. In the clinic, they have more control over who is allowed in. Wether he is inpatient or outpatient will be decided by the insurance.
As an outpatient, Simon will be at the clinic every morning at 9:30 and go home around 5:00. The goal of the treatments is to wipe out his t-cells, so that his body can grow healthy ones back. The first 2 weeks of treatment could be rough. Some kids have a reaction called serum syndrome. It causes painful and swollen joints. He will be given steroids to try to avoid that or at least minimize its effect. After the first 2 weeks, that usually goes away.
Sometime during the first month of treatment, the other 4 kids will have their blood tested to see if they are a match in the event of a bone marrow transplant. If Simon is improving with the immune therapy, that can be carried out for up to 6 months, but they usually only go 1-3 months. If there is little or no improvement, they will begin the process for the bone marrow transplant. The transplant would take place up in Denver.
The major concerns over the next few months will be bleeding and infection. Because of that, he will be very limited on contact with people. School will be out, as will any place with large numbers of people. He will be allowed visitors, as long as they are free from colds or any other illnesses. Also, small gatherings of people would be okay, as long as no one is sick. He will be able to attend church, and orchestra should be okay, since we are a small orchestra and kids who are sick don't attend.
Last night, Simon was scared, and this morning he had a panic attack, but it was short lived, and he has been in great spirits since then. He did great when they put his IV in tonight, and he is now sleeping.
Thank you all for your continued prayers and support. Simon is very encouraged by the fact that he has people all across the country praying for him.
I have so many thoughts that I need to get out of my head and onto the paper, but I am exhausted, so they will have to wait until tomorrow.
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