My kids are growing up in a world of technology. We have always had a VCR and more recently, a DVD player. They play handheld electronic games and computer games. Just recently, the kids got a Wii. One of the side effects of all this technology has been vocabulary the children use.
When the kids are in the middle of a game of make believe, and they are interrupted for dinner, or to take care of their dogs, or any other reason, they say to one another, "Pause the game." This terminology has always cracked me up. It is surely a sign of the times.
How often in life, do we wish we could just hit the pause button for a time. It would be nice to be able to pause life for a time to catch up on sleep or the unending chores that need doing. I have often wished for a mute button when the kids are getting loud or arguing with one another!
For the last 2 months, there has been a pause button on our lives. When we received Simon's diagnosis of severe aplastic anemia, someone hit the pause button and our lives were put on hold. Plans for the future stopped.
We had been planning a trip to Portland and Seattle to visit friends and family. While Bob has been out there a lot over the past 2 years with his job, it has been 4 years since our last visit. I had been looking forward to the road trip and to seeing friends I hadn't seen in years. Then the pause button was hit. With Simon's illness, travel was out of the question.
Yesterday, Simon was back at the doctor for his routine check. It had been a whole week since we had been. Simon has been active following his transfusion of 2 weeks ago. He even went out sledding a bit when we got the snow last week. He has a few new bruises on his arms, but nothing severe. I was anxious to find out what his counts were.
When the nurse brought in the count sheet, I was blown away by the platelet count! It has been climbing steadily, but over the past week is flew! Last Monday, it was up in the 80's. Yesterday, it was at 164! Normal range starts at 140! No longer do we have to worry about something as mundane as a nosebleed or a simple fall, or Simon bumping his arms or legs. As far as bleeding goes, Simon is a normal kid again, able to participate in everyday activities.
Simon's red count, especially the hemoglobin, is exactly where it was last week. While still below normal, it is high enough that Simon is not easily tired. He can go sledding or take a walk or ride his bike, just like any other kid!
Simon's white count is a bit lower than it was a week ago. It has gone from 1.8 down to 1.1. Low, but much higher that it was when he needed Neupegen to bring it up. It is high enough that Simon can go shopping. He can go to a movie or the mall, or a crowded restaurant. He will be going back to school after spring break!
Dr. Cook is thrilled with Simon's progress. It appears that Simon is responding well to the immune suppression therapy he received early in February. For now, we made be able to avoid the bone marrow transplant!
Simon's bone marrow is still at 5%, but Dr. Cook had warned us about that. He said often the peripheral counts come up before the bone marrow actually starts to rebound. We will do another bone marrow biopsy and aspiration in 2 months.
We are still waiting to hear if any of Simon's siblings are matches, but with transplant on the back burner, that doesn't seem so critical at this time.
Simon still has some PNH cells, which are malformed red blood cells. That is very common in aplastic anemia, not necessarily indicating that Simon has PNH. However, about 1/3 of people with aplastic anemia also have PNH. For now, Simon's PNH cells are low, so the doctor will continue to watch that. If actual PNH develops, Simon will need the transplant.
We are also still waiting for the results of the chromosomal fragility test. I still have no idea what that means, but am not going to worry about it.
Over the past 2 months, we have visited the clinic anywhere from 2-5 times a week. Throw in the occasional trips to the hospital, and Simon's illness became a full time job. Our next visit is scheduled for 2 weeks out! Down to twice a month! I am loving it!
The pause button has been released! We are once again able to play! While I will not make any plans that cannot be easily changed, I am once again contemplating a summer road trip. With Bob working from home until July, the kids and I should be able to take a couple of weeks to head to the west coast in June. We might even be able to squeeze in a camping trip or two. Life is moving forward! God is good and I give thanks!
On another note, this morning at 5:30, I dropped Oliver off at the church. He is heading to a youth conference at West Coast Baptist College in Lancaster, CA. I am thrilled for him to have this opportunity. He has always been my rock, stepping up to help when needed. Over these past 2 months, he has taken on more than his share of responsibility around here, even without being asked. He has earned this break. His trip will include a day at Magic Mountain Amusement Park. I am missing him already!
I do not know what tomorrow holds for Simon or the rest of our family. I do know that today, he is healthy and we are going to rejoice in the day and HAVE FUN! We are hitting the play button!
A diary through the thoughts of a mother whose son was diagnosed with a critical illness.
Tuesday, March 31, 2009
Monday, March 23, 2009
Monday Praise Report
Today was a good day at the doctor's office. Simon's platelet count continues to rise. His granulcyte level is high enough that he does not need to be isolated. His hemoglobin is about the same place it was the day after his transfusion last week. If his counts remain this high, he will be able to return to school full time after spring break!
Dr. Cook was very pleased with today's counts and with how well Simon is doing. He is encouraged by Simon's progress and is even hopeful that the immune suppression treatments are working. Perhaps Simon will be one of the lucky ones who is able to avoid transplant. It is far more than we had been hoping for.
Today also happens to be Simon's 11th birthday. Yesterday, as I thought about ways to make his birthday extra special, I also wondered how many more birthdays he may celebrate. Today, I rejoiced in the news from the doctor and began to look forward to more birthdays in the future. To celebrate the the good news, Simon and I went out for sushi for lunch. Sushi is one of Simon's favorites, but he has been unable to eat it since his diagnosis. Following today's counts, the doctor said Simon could do just about anything he wanted!
While the news today was good, I am also holding back on my enthusiasm. We are still waiting on some test results. The PNH test is still out. If it comes back positive, transplant will be necessary. The first time they did the test, it was inconclusive. While the number of PNH cells that showed up wouldn't have raised any questions in a normal person, in a person with aplastic anemia, they become suspicious.
We are also waiting for a test on for chromosomal fragility. I have no idea what it is or what it would mean. I can only digest so much information at a time, so I will deal with that only on an as needed basis.
Simon's bone marrow report from last Monday still hasn't come back. Dr. Cook warned me that it may come back and show little or no change. He told me not to be discouraged if that is the case. Often the peripheral blood counts rebound faster than the actual bone marrow.
So, we still wait. However, this time the waiting is different. The kids are on spring break, and we now have the green light to enjoy it! If we want to go to a movie or the park, we can all go. We are hoping to spend an afternoon at Focus on the Family, something that had been out of the question before today's cbc.
And now, my family is going to string me up if I don't get off the computer and sing "Happy Birthday" to Simon. Simon picked out a black forest cake, and my mouth is starting to water! This is one birthday celebration I am throwing my whole heart into!
Dr. Cook was very pleased with today's counts and with how well Simon is doing. He is encouraged by Simon's progress and is even hopeful that the immune suppression treatments are working. Perhaps Simon will be one of the lucky ones who is able to avoid transplant. It is far more than we had been hoping for.
Today also happens to be Simon's 11th birthday. Yesterday, as I thought about ways to make his birthday extra special, I also wondered how many more birthdays he may celebrate. Today, I rejoiced in the news from the doctor and began to look forward to more birthdays in the future. To celebrate the the good news, Simon and I went out for sushi for lunch. Sushi is one of Simon's favorites, but he has been unable to eat it since his diagnosis. Following today's counts, the doctor said Simon could do just about anything he wanted!
While the news today was good, I am also holding back on my enthusiasm. We are still waiting on some test results. The PNH test is still out. If it comes back positive, transplant will be necessary. The first time they did the test, it was inconclusive. While the number of PNH cells that showed up wouldn't have raised any questions in a normal person, in a person with aplastic anemia, they become suspicious.
We are also waiting for a test on for chromosomal fragility. I have no idea what it is or what it would mean. I can only digest so much information at a time, so I will deal with that only on an as needed basis.
Simon's bone marrow report from last Monday still hasn't come back. Dr. Cook warned me that it may come back and show little or no change. He told me not to be discouraged if that is the case. Often the peripheral blood counts rebound faster than the actual bone marrow.
So, we still wait. However, this time the waiting is different. The kids are on spring break, and we now have the green light to enjoy it! If we want to go to a movie or the park, we can all go. We are hoping to spend an afternoon at Focus on the Family, something that had been out of the question before today's cbc.
And now, my family is going to string me up if I don't get off the computer and sing "Happy Birthday" to Simon. Simon picked out a black forest cake, and my mouth is starting to water! This is one birthday celebration I am throwing my whole heart into!
Saturday, March 21, 2009
I Surrender All, or Do I Really?
I have been putting of writing this particular blog for a week now. I suppose the time has come to end the procrastination. The reason for the delay lies in the dread that comes with even thinking about these particular thoughts and issues. Even now, as I sit down at the computer, I find myself easily distracted, trying to avoid what must be dealt with.
At church last Sunday, we had a special guest who sang a song about our legacy. It got me to thinking about what kind of legacy will I leave behind. How will I be remembered? What kind of impact will I leave on this earth. From there, my mind wandered to Simon.
Regardless of how long or short his precious life may be, what kind of legacy will he leave behind? Life with Simon can be trying at times. He is bipolar. To him, there is only black and white. There are no shades of gray. For those of us who are willing to take the time to get beyond the uniqueness of Simon, we are able to discover a heart of gold.
While Simon is easily angered and has difficulties in dealing with his emotions, he also has a passion for people. He comes across as a loner, because he doesn't know how to cope with people a lot of the time. For him, it is often easier to play by himself or get lost in a book than to try to understand the intricacies of the emotions of others.
Simon has learned to build a wall of separation around himself. If he pushes others away before they reject him, he spares himself the hurt. Beyond the wall is a heart that loves deeply, and a passion that burns for justice. He is saddened by people who do not know Jesus.
The singer next sang a song that turned my thoughts to surrender. "The secret of life is letting go. The secret of love is letting it show. The power of prayer is in a humble cry. Take my heart, take my soul, I surrender everything to your control."
How does a parent let go of their child's life? When I accepted Christ as my personal Lord and Savior, I committed to surrendering all to God. As a parent, I would give my life for any one of my children. Surrendering my life is easy, but my children? Will I ever be able to say to God, "I surrender Simon to you. He is yours to take, if that be your will." Will I ever be able to surrender my children completely? If I am unable to surrender ALL, how committed am I to God?
If Simon's time on earth is cut short, I do not fear for what comes next. Simon accepted Jesus at a young age. He showed his committed through the act of baptism last summer. God has prepared many mansion for us in heaven.
My fear is for me and the rest of my family. How will we cope if one of us is taken from us? How will I cope if that part of me is ripped away? Even as I type this, the tears are streaming down my face. I want to run as fast and as far away as I can. I am unable to face the possible future.
Pastor Dave spoke of nurses of terminally ill children. The nurses speak of how the children prepare their parents for their death. The children do not die until they believe their parents are ready to let go. My heart is screaming from the pain. "Never will I be able to let go!"
Before my children were even born, I knew they belonged to God. He has placed them in my care with very specific instructions about training them up in the ways of the Lord. It is my responsibility to care for them physically, emotionally, and spiritually. In return, I have the privilege to love on them, watch them grow, and delight in their company. (That isn't to say that they are always delightful to be around!)
Until Simon became sick, the fact that they are only on loan to me has never bothered me. In fact, it has been a source of comfort. With Simon's illness, I am finding myself questioning my commitment to God's ownership of my children. I am able to speak the words, but will I be able to back them up with my actions if asked to do so?
If God requires me to let go of Simon, will I be able to do that? Will I be able to say to God, with all honesty in my heart, "Simon is yours. Your will, not mine be done." If I am unable or unwilling to do that, can I really claim to have faith in God? How can I claim to trust God completely, if I am unwilling to surrender my children to his will?
Abraham was willing to sacrifice his son Isaac on the altar, because he trusted God wholly and completely. Will I ever come close to that kind of strength, that kind of faith?
When we have an intimate relationship with God, we have to adjust our lives to God, not the other way around.
God sacrificed his son, Jesus Christ, on the cross in the most horrific kind of death imaginable, that we might have eternal life. He made that sacrifice for me and He made that sacrifice for Simon. I have to hold tightly to that fact while I grapple with the future.
I have to find peace in knowing that God can see the future and I can't. I have to find strength in the knowledge that God has never let me down. Regardless of what tomorrow brings, I have to rest in God's arms of love. His compassion fails not. He gives me "strength for today and a bright hope for tomorrow."
As difficult as it may be, I have no choice but to surrender all.
At church last Sunday, we had a special guest who sang a song about our legacy. It got me to thinking about what kind of legacy will I leave behind. How will I be remembered? What kind of impact will I leave on this earth. From there, my mind wandered to Simon.
Regardless of how long or short his precious life may be, what kind of legacy will he leave behind? Life with Simon can be trying at times. He is bipolar. To him, there is only black and white. There are no shades of gray. For those of us who are willing to take the time to get beyond the uniqueness of Simon, we are able to discover a heart of gold.
While Simon is easily angered and has difficulties in dealing with his emotions, he also has a passion for people. He comes across as a loner, because he doesn't know how to cope with people a lot of the time. For him, it is often easier to play by himself or get lost in a book than to try to understand the intricacies of the emotions of others.
Simon has learned to build a wall of separation around himself. If he pushes others away before they reject him, he spares himself the hurt. Beyond the wall is a heart that loves deeply, and a passion that burns for justice. He is saddened by people who do not know Jesus.
The singer next sang a song that turned my thoughts to surrender. "The secret of life is letting go. The secret of love is letting it show. The power of prayer is in a humble cry. Take my heart, take my soul, I surrender everything to your control."
How does a parent let go of their child's life? When I accepted Christ as my personal Lord and Savior, I committed to surrendering all to God. As a parent, I would give my life for any one of my children. Surrendering my life is easy, but my children? Will I ever be able to say to God, "I surrender Simon to you. He is yours to take, if that be your will." Will I ever be able to surrender my children completely? If I am unable to surrender ALL, how committed am I to God?
If Simon's time on earth is cut short, I do not fear for what comes next. Simon accepted Jesus at a young age. He showed his committed through the act of baptism last summer. God has prepared many mansion for us in heaven.
My fear is for me and the rest of my family. How will we cope if one of us is taken from us? How will I cope if that part of me is ripped away? Even as I type this, the tears are streaming down my face. I want to run as fast and as far away as I can. I am unable to face the possible future.
Pastor Dave spoke of nurses of terminally ill children. The nurses speak of how the children prepare their parents for their death. The children do not die until they believe their parents are ready to let go. My heart is screaming from the pain. "Never will I be able to let go!"
Before my children were even born, I knew they belonged to God. He has placed them in my care with very specific instructions about training them up in the ways of the Lord. It is my responsibility to care for them physically, emotionally, and spiritually. In return, I have the privilege to love on them, watch them grow, and delight in their company. (That isn't to say that they are always delightful to be around!)
Until Simon became sick, the fact that they are only on loan to me has never bothered me. In fact, it has been a source of comfort. With Simon's illness, I am finding myself questioning my commitment to God's ownership of my children. I am able to speak the words, but will I be able to back them up with my actions if asked to do so?
If God requires me to let go of Simon, will I be able to do that? Will I be able to say to God, with all honesty in my heart, "Simon is yours. Your will, not mine be done." If I am unable or unwilling to do that, can I really claim to have faith in God? How can I claim to trust God completely, if I am unwilling to surrender my children to his will?
Abraham was willing to sacrifice his son Isaac on the altar, because he trusted God wholly and completely. Will I ever come close to that kind of strength, that kind of faith?
When we have an intimate relationship with God, we have to adjust our lives to God, not the other way around.
God sacrificed his son, Jesus Christ, on the cross in the most horrific kind of death imaginable, that we might have eternal life. He made that sacrifice for me and He made that sacrifice for Simon. I have to hold tightly to that fact while I grapple with the future.
I have to find peace in knowing that God can see the future and I can't. I have to find strength in the knowledge that God has never let me down. Regardless of what tomorrow brings, I have to rest in God's arms of love. His compassion fails not. He gives me "strength for today and a bright hope for tomorrow."
As difficult as it may be, I have no choice but to surrender all.
Thursday, March 19, 2009
Good, But Tiring Days
First an update.
Yesterday, Simon and I arrived at the hospital at 9:00 for his transfusion. I thought we would be there for an hour or two. I should have known better!
They put him into a bed on the pediatric ward so that they could monitor him as he received the blood. We were actually in the ICU side, because the regular floor was full.
Simon thought it was great fun. He was hungry, as always. As soon as they got him settled, he was able to order as much food as he wanted. He started out with an omelet with cheese, bacon, and mushrooms. With that, he had 2 strips of bacon, some sausage, and hot cocoa. After he finished that, he ordered a sausage, mushroom, and pepperoni pizza with macaroni and cheese, canned pears, and grape juice. Finally, he ordered apple cobbler, more canned pears, and a soda! It made my stomach hurt just watching him eat all that food!
While Simon was eating all that food, they pumped 2 bags of blood into his body. It was uneventful, but it took all day. Simon was finally discharged at 3:30. Simon was a bit sad to leave the room service menu behind, but I was more than ready to be done with the hospital! It was a long day and I was very tired! (I did use the time to get my 5 days worth of Bible study done that I hadn't gotten to earlier in the week!)
Simon complained a bit about his legs getting sore from sitting so long with out moving. He got up and walked around the room a bit, which seemed to help. After we left the hospital, Simon started to cry because his knee was hurting really bad. I stopped at the store and picked up a thermometer, because he felt very warm, and I didn't want to drive all the way home and find out we had to head back into town, because he had a fever.
While it was low grade, he did have a fever. I called the clinic and was told to give him some tylenol and keep an eye on him. So we headed out to Falcon, picked up Oliver and Warren and went home. (Bob had already taken the youngest 2 kids home.)
At home, Simon's temp was up to 100.4. Not bad, but just enough to give me something to worry about. It didn't seem to be getting going up, so I left him home with Bob and took the other kids to church for kingdom kids and Bible study. I was nervous about leaving Simon, but really needed a break.
As soon as Bible study ended, I called home to check on Simon. Simon answered on the first ring and he was crying. He was so broken up that I was unable to understand what he was saying. I talked to Bob and found out that Simon was just very tired and his blankets were all messed up on his bed, and his dog still needed to come in. I told Bob to help him with the bed, and I would take care of the dog when I got home. Then I rushed the other kids into the car and raced home.
Church is only 10 minutes from home, and Simon was already sound asleep by the time we arrived. I checked his temperature while he slept. It was down below 100, so I figured the crisis had passed. I was able to get a good night's sleep!
This morning, I dropped the kids off at school and came home to get Simon for his dentist appointment. This time, he had liquid amoxicillin, which went down so much easier, all 8 teaspoons of it! Then off to the dentist for 2 hours while Simon had 5 cavities on the right side of his mouth filled. He has 1 cavity on the left, but that will be fixed in 2 weeks.
From the dentist, we grabbed a bite to eat in the car and headed into town. First stop we the music store to return the violin. That was hard on me, but had to be done. Then we payed a bill and headed to the clinic for a blood draw and check up.
Simon's hemoglobin was up in the respectable range again, thanks to the transfusion. His platelets, which had been high on Monday, were even higher today. Even his granulcytes were up to 1.8, which is incredible. The platelets have been steadily climbing, which encourages me. His granulcytes may have received a boost from the transfusion. The doctor said that often a rise in one count will pull the other numbers up.
What ever the reason, we will take today's cbc as the gift that it is. It means the next 3 days will be appointment free. The granulcytes are high enough that we will be able to get out of the house for a bit this week-end. It is a glimpse of freedom! I will be able to go to coffee with my friends in the morning, which I haven't been able to do for the last 3 weeks. I'll be able to take mom shopping on Saturday, and not feel guilty about leaving Simon home with Bob.
While I am thrilled with today's counts, I also know that it is a reprieve, not an end. Monday morning, we will be back at the clinic. Hopefully, we will have the results of last Monday's bone marrow tests. Maybe we will have some answers, and maybe not. Regardless of what Monday brings, I am going to enjoy the break and find rest for this very weary mom.
I started off with "First an update," because I have so many things in my head that I have been struggling with this week. My intent was to update and then empty my brain of those questions. I am just too tired to tackle it tonight. Thoughts will have to wait until tomorrow or the week-end.
Yesterday, Simon and I arrived at the hospital at 9:00 for his transfusion. I thought we would be there for an hour or two. I should have known better!
They put him into a bed on the pediatric ward so that they could monitor him as he received the blood. We were actually in the ICU side, because the regular floor was full.
Simon thought it was great fun. He was hungry, as always. As soon as they got him settled, he was able to order as much food as he wanted. He started out with an omelet with cheese, bacon, and mushrooms. With that, he had 2 strips of bacon, some sausage, and hot cocoa. After he finished that, he ordered a sausage, mushroom, and pepperoni pizza with macaroni and cheese, canned pears, and grape juice. Finally, he ordered apple cobbler, more canned pears, and a soda! It made my stomach hurt just watching him eat all that food!
While Simon was eating all that food, they pumped 2 bags of blood into his body. It was uneventful, but it took all day. Simon was finally discharged at 3:30. Simon was a bit sad to leave the room service menu behind, but I was more than ready to be done with the hospital! It was a long day and I was very tired! (I did use the time to get my 5 days worth of Bible study done that I hadn't gotten to earlier in the week!)
Simon complained a bit about his legs getting sore from sitting so long with out moving. He got up and walked around the room a bit, which seemed to help. After we left the hospital, Simon started to cry because his knee was hurting really bad. I stopped at the store and picked up a thermometer, because he felt very warm, and I didn't want to drive all the way home and find out we had to head back into town, because he had a fever.
While it was low grade, he did have a fever. I called the clinic and was told to give him some tylenol and keep an eye on him. So we headed out to Falcon, picked up Oliver and Warren and went home. (Bob had already taken the youngest 2 kids home.)
At home, Simon's temp was up to 100.4. Not bad, but just enough to give me something to worry about. It didn't seem to be getting going up, so I left him home with Bob and took the other kids to church for kingdom kids and Bible study. I was nervous about leaving Simon, but really needed a break.
As soon as Bible study ended, I called home to check on Simon. Simon answered on the first ring and he was crying. He was so broken up that I was unable to understand what he was saying. I talked to Bob and found out that Simon was just very tired and his blankets were all messed up on his bed, and his dog still needed to come in. I told Bob to help him with the bed, and I would take care of the dog when I got home. Then I rushed the other kids into the car and raced home.
Church is only 10 minutes from home, and Simon was already sound asleep by the time we arrived. I checked his temperature while he slept. It was down below 100, so I figured the crisis had passed. I was able to get a good night's sleep!
This morning, I dropped the kids off at school and came home to get Simon for his dentist appointment. This time, he had liquid amoxicillin, which went down so much easier, all 8 teaspoons of it! Then off to the dentist for 2 hours while Simon had 5 cavities on the right side of his mouth filled. He has 1 cavity on the left, but that will be fixed in 2 weeks.
From the dentist, we grabbed a bite to eat in the car and headed into town. First stop we the music store to return the violin. That was hard on me, but had to be done. Then we payed a bill and headed to the clinic for a blood draw and check up.
Simon's hemoglobin was up in the respectable range again, thanks to the transfusion. His platelets, which had been high on Monday, were even higher today. Even his granulcytes were up to 1.8, which is incredible. The platelets have been steadily climbing, which encourages me. His granulcytes may have received a boost from the transfusion. The doctor said that often a rise in one count will pull the other numbers up.
What ever the reason, we will take today's cbc as the gift that it is. It means the next 3 days will be appointment free. The granulcytes are high enough that we will be able to get out of the house for a bit this week-end. It is a glimpse of freedom! I will be able to go to coffee with my friends in the morning, which I haven't been able to do for the last 3 weeks. I'll be able to take mom shopping on Saturday, and not feel guilty about leaving Simon home with Bob.
While I am thrilled with today's counts, I also know that it is a reprieve, not an end. Monday morning, we will be back at the clinic. Hopefully, we will have the results of last Monday's bone marrow tests. Maybe we will have some answers, and maybe not. Regardless of what Monday brings, I am going to enjoy the break and find rest for this very weary mom.
I started off with "First an update," because I have so many things in my head that I have been struggling with this week. My intent was to update and then empty my brain of those questions. I am just too tired to tackle it tonight. Thoughts will have to wait until tomorrow or the week-end.
Tuesday, March 17, 2009
Taking Back the Violin
When Simon was 4 years old, he saw "Fiddler on the Roof" and he fell in love with the violin. He has wanted to learn to play ever since. This fall, we finally had the opportunity to make his dream become a reality. The school was offering an after school orchestra program!
I signed Simon up and rented his instrument. At first, he was very excited. He loved the IDEA of orchestra, and especially the violin. The trouble was, he wanted to be like Tevya. He wanted to pick up his instrument and be able to play well enough to dance on the roof and play while the sun set!
When he couldn't play like that, he became discouraged and frustrated. It was twice as hard for him to do what the other kids in the group seemed to do with ease. He wanted to give up, but I knew how badly he wanted it in his heart. I couldn't let him give up with out a fight!
After a couple of weeks of watching him become more and more frustrated, I went to the music store and rented a violin for myself. I joined the orchestra so I would be able to learn right along side Simon. Now Simon and I had something that we could do together. (Oliver is also in the orchestra, playing the viola.) I love doing this with my boys. Unfortunately, I enjoy it far more than either one of them. I love to practice, but getting them to practice is like pulling teeth!
For Oliver, the music come easily. If he would spend a small amount of time at it, he would be quite talented. For Simon, it is hard. He hates to practice and he gets upset when he can't keep up, but he still loves orchestra and the idea of being able to play. I am not yet willing to let him give up on his dream so easily.
Since Simon was diagnosed with severe aplastic anemia, he has only been able to attend orchestra once. Even though he attended, he was too exhausted to play. Just holding up his violin wiped him out. His violin has been sitting in its case ever since. While I am not giving up on his dream, or allowing him to give up, I have decided that this particular dream will have to be put on the shelf for now.
Tomorrow morning, Simon has to go in for a transfusion. After that, we will return his violin to the music store. I am telling myself that it is only until he gets his strength back, but it breaks this mother's heart none the less. I wonder how many other dreams will have to be abandoned or postponed as illness consumes his life?
I have told Simon that we will go back to the music store when he gets his strength back. For now, if he feels the urge to play, he is welcome to play mine. I continue to attend orchestra with Oliver. I still love it, but it isn't the same without Simon as my music stand partner.
Now I have a dream. I dream of playing the violin, side by side with Simon, out on the porch during the summer, as we watch the sun set behind Pikes Peak. I don't know when we will get there, but I will not give up on dreams, and I will NEVER GIVE UP on Simon!
I signed Simon up and rented his instrument. At first, he was very excited. He loved the IDEA of orchestra, and especially the violin. The trouble was, he wanted to be like Tevya. He wanted to pick up his instrument and be able to play well enough to dance on the roof and play while the sun set!
When he couldn't play like that, he became discouraged and frustrated. It was twice as hard for him to do what the other kids in the group seemed to do with ease. He wanted to give up, but I knew how badly he wanted it in his heart. I couldn't let him give up with out a fight!
After a couple of weeks of watching him become more and more frustrated, I went to the music store and rented a violin for myself. I joined the orchestra so I would be able to learn right along side Simon. Now Simon and I had something that we could do together. (Oliver is also in the orchestra, playing the viola.) I love doing this with my boys. Unfortunately, I enjoy it far more than either one of them. I love to practice, but getting them to practice is like pulling teeth!
For Oliver, the music come easily. If he would spend a small amount of time at it, he would be quite talented. For Simon, it is hard. He hates to practice and he gets upset when he can't keep up, but he still loves orchestra and the idea of being able to play. I am not yet willing to let him give up on his dream so easily.
Since Simon was diagnosed with severe aplastic anemia, he has only been able to attend orchestra once. Even though he attended, he was too exhausted to play. Just holding up his violin wiped him out. His violin has been sitting in its case ever since. While I am not giving up on his dream, or allowing him to give up, I have decided that this particular dream will have to be put on the shelf for now.
Tomorrow morning, Simon has to go in for a transfusion. After that, we will return his violin to the music store. I am telling myself that it is only until he gets his strength back, but it breaks this mother's heart none the less. I wonder how many other dreams will have to be abandoned or postponed as illness consumes his life?
I have told Simon that we will go back to the music store when he gets his strength back. For now, if he feels the urge to play, he is welcome to play mine. I continue to attend orchestra with Oliver. I still love it, but it isn't the same without Simon as my music stand partner.
Now I have a dream. I dream of playing the violin, side by side with Simon, out on the porch during the summer, as we watch the sun set behind Pikes Peak. I don't know when we will get there, but I will not give up on dreams, and I will NEVER GIVE UP on Simon!
Monday, March 16, 2009
Nuts and Bolts of the Past Week
I can't believe it has been almost a week since I have updated my blog! I need to be more diligent!
On Thursday, Simon had a routine appointment that was nothing but routine. His counts were all about the same. His granulcytes were high enough that he didn't need any neupegen, and his hemoglobin was still stable, so no transfusion.
I had a couple of opportunities to work last week, filling in for the office manager at the school. I had a great time and enjoyed feeling productive for a while.
After the doctor spoke to the transplant team, we were discouraged to learn that they do not even want to meet with us until we are 90 days out, or unless things take a turn for the worse. If we reach 90 days and there are no signs of improvement, we will meet with the transplant team in Denver for the first time.
Today, Simon had an appointment and they performed his second bone marrow aspiration. It sounds like a painful procedure, but other than the initial pokes with lidicain, it doesn't bother Simon. (He was even outside playing with Ezri and Beau for a bit tonight!) We do not have to go back to see Dr. Cook until next Monday, but he will call as soon as he has the bone marrow results. That could be as early as Wednesday.
We are still waiting on the results of the HLA testing on the other kids. Dr. Cook expects those early next week, but will call if he hears anything sooner. Those results may very well determine whether we stay in Colorado for the transplant or up root to Seattle.
That very question has been weighing heavy on my heart. I have so much support in both places, and want to do what is best for Simon, keeping in mind the 4 other children I love so dearly. With that in mind, I asked Dr. Cook where he would take his own kids or his grandkids.
Since he has grandkids in Seattle, he said they would go there, but if they lived here in Colorado, he would be comfortable with Denver, especially if they were receiving the marrow from a matched sibling. If, on the other hand, the donor is an unrelated donor, Seattle might look more promising. Transplant with an unmatched donor is far more risky, especially if it is from an adult donor rather than from a cord blood donor.
His suggestion is to meet with the team in Denver and ask them any questions I have, including number of transplants, experience with aplastic anemia, etc. He said that one of the most important aspects of the transplant will be a good connection with the doctors performing it. If we meet with the doctors in Denver and just are not comfortable, he will refer us to Seattle for a second consult.
One advantage to Denver is the fact that it is a smaller center, which would mean more personalized care, without sacrificing quality, in Dr. Cooks opinion.
So, until we have the HLA results on the other kids, I need to put the whole Seattle verses Denver issue aside and focus on here and now!
Besides checking the quality of Simon's marrow, they will perform some other tests on it. One is the PNH test. PNH is a whole different condition, which would move the transplant up. Transplant is the only cure for that one. The other test is chromosomal fragility. I have no idea just what that means, but I figure I will deal with it only if I have to. The prior tests for both of those were either inconclusive or unsuccessful.
With bone marrow aspiration, people imagine a procedure that is far worse than the actual event. Simon is given a local anesthesia and conscious sedation. He feels the needle poke for the local, but when it is over, he can't remember it. His hip will feel bruised for a couple of days, but even that is mild.
Simon's platelets were way up today, at 52! They haven't been that high since he had the platelet transfusion in the hospital before they installed his port! His granulcytes were at .8, which is acceptable. His hemoglobin, how ever, was way down, at 6.4. On Wednesday morning, Simon will go into the hospital for his second transfusion.
That is the nuts and bolts of the past week, as far as Simon's condition goes. Emotionally, I have been all over the place. I have thoughts and feelings that I want to write about, but those will have to wait for another day. It has been a long day, and I need to call it a night!
On Thursday, Simon had a routine appointment that was nothing but routine. His counts were all about the same. His granulcytes were high enough that he didn't need any neupegen, and his hemoglobin was still stable, so no transfusion.
I had a couple of opportunities to work last week, filling in for the office manager at the school. I had a great time and enjoyed feeling productive for a while.
After the doctor spoke to the transplant team, we were discouraged to learn that they do not even want to meet with us until we are 90 days out, or unless things take a turn for the worse. If we reach 90 days and there are no signs of improvement, we will meet with the transplant team in Denver for the first time.
Today, Simon had an appointment and they performed his second bone marrow aspiration. It sounds like a painful procedure, but other than the initial pokes with lidicain, it doesn't bother Simon. (He was even outside playing with Ezri and Beau for a bit tonight!) We do not have to go back to see Dr. Cook until next Monday, but he will call as soon as he has the bone marrow results. That could be as early as Wednesday.
We are still waiting on the results of the HLA testing on the other kids. Dr. Cook expects those early next week, but will call if he hears anything sooner. Those results may very well determine whether we stay in Colorado for the transplant or up root to Seattle.
That very question has been weighing heavy on my heart. I have so much support in both places, and want to do what is best for Simon, keeping in mind the 4 other children I love so dearly. With that in mind, I asked Dr. Cook where he would take his own kids or his grandkids.
Since he has grandkids in Seattle, he said they would go there, but if they lived here in Colorado, he would be comfortable with Denver, especially if they were receiving the marrow from a matched sibling. If, on the other hand, the donor is an unrelated donor, Seattle might look more promising. Transplant with an unmatched donor is far more risky, especially if it is from an adult donor rather than from a cord blood donor.
His suggestion is to meet with the team in Denver and ask them any questions I have, including number of transplants, experience with aplastic anemia, etc. He said that one of the most important aspects of the transplant will be a good connection with the doctors performing it. If we meet with the doctors in Denver and just are not comfortable, he will refer us to Seattle for a second consult.
One advantage to Denver is the fact that it is a smaller center, which would mean more personalized care, without sacrificing quality, in Dr. Cooks opinion.
So, until we have the HLA results on the other kids, I need to put the whole Seattle verses Denver issue aside and focus on here and now!
Besides checking the quality of Simon's marrow, they will perform some other tests on it. One is the PNH test. PNH is a whole different condition, which would move the transplant up. Transplant is the only cure for that one. The other test is chromosomal fragility. I have no idea just what that means, but I figure I will deal with it only if I have to. The prior tests for both of those were either inconclusive or unsuccessful.
With bone marrow aspiration, people imagine a procedure that is far worse than the actual event. Simon is given a local anesthesia and conscious sedation. He feels the needle poke for the local, but when it is over, he can't remember it. His hip will feel bruised for a couple of days, but even that is mild.
Simon's platelets were way up today, at 52! They haven't been that high since he had the platelet transfusion in the hospital before they installed his port! His granulcytes were at .8, which is acceptable. His hemoglobin, how ever, was way down, at 6.4. On Wednesday morning, Simon will go into the hospital for his second transfusion.
That is the nuts and bolts of the past week, as far as Simon's condition goes. Emotionally, I have been all over the place. I have thoughts and feelings that I want to write about, but those will have to wait for another day. It has been a long day, and I need to call it a night!
Tuesday, March 10, 2009
Unwrapping the Gift
On Friday, I thought about the gifts God has blessed us with as we have gone through this difficult time in our lives. I wondered what gift would be next.
One gift came through this morning in the area of an answered prayer. One looming concern was going to be the loss of a bus to get Warren to and from school. The city bus he has been taking all year is going to be eliminated on April 5. At 8:23 this morning, I received an e-mail from Warren's school. They will be re-routing their buses in order to pick up the kids from Falcon! Warren will be picked up and dropped off at Walmart by the CSEC school bus, starting March 30! He will have to be at the bus stop an half hour earlier than before, but that will actually make it easier to get him to the bus and get back home to get the other kids ready and to school.
As far as Simon, the week-end was one of ups and downs. His energy level has been high, but his body hasn't been able to keep up with what he wants to do. If he is up and running around like he wants, he gets really bad headaches. The headache goes away as soon as he sits down and rests for a few minutes. Being cooped up is starting to take its toll on him. He doesn't feel sick, so he wants to act like a normal 10 year old boy. He can't be a normal 10 year old boy, so he is becoming moody. He has his ups and downs.
Yesterday, we were at the clinic for a routine check. His counts were holding steady. His platelets were at 26. His hemoglobin was at 7.4. Still very low, but no longer dropping. His granulcytes were back down to .5, which is kind of the cut of mark for being able to be around people. While none of the counts were good, they were all acceptable. He is not getting better, but he is also not getting any worse.
The doctor suggested that we get Simon into the dentist to get his teeth cleaned. It would need to be done before he would be able to have the transplant. I took him in last night. One hour before his appointment, he had to have 2000 milligrams of amoxicillin. He had 8 HUGE pills that he had to CHEW! (The smell alone made me want to gag!) He had a hard time getting them down, but once they were down, he was able to keep them down. When they do dental work, bacteria enters the blood stream, so the antibiotics needed to be there to combat anything that might harm Simon. Simon, of course, bled more than normal during the cleaning, but nothing that required any special measures.
Today, I was able to take a break from the medical world and work. It felt good to be back at the school. I love being able to be an occasional part of the incredible work they are doing there. It also was a much needed break.
Simon's doctor was going to talk to the transplant team today. Hopefully, we will know more when we go in on Thursday. Tomorrow will be 6 weeks from the beginning of this journey, 5 weeks from the "official" diagnosis and his first hospital stay. On February 10th, he began his immune suppression treatments. Today, we are 4 weeks from the beginning of that treatment.
One gift came through this morning in the area of an answered prayer. One looming concern was going to be the loss of a bus to get Warren to and from school. The city bus he has been taking all year is going to be eliminated on April 5. At 8:23 this morning, I received an e-mail from Warren's school. They will be re-routing their buses in order to pick up the kids from Falcon! Warren will be picked up and dropped off at Walmart by the CSEC school bus, starting March 30! He will have to be at the bus stop an half hour earlier than before, but that will actually make it easier to get him to the bus and get back home to get the other kids ready and to school.
As far as Simon, the week-end was one of ups and downs. His energy level has been high, but his body hasn't been able to keep up with what he wants to do. If he is up and running around like he wants, he gets really bad headaches. The headache goes away as soon as he sits down and rests for a few minutes. Being cooped up is starting to take its toll on him. He doesn't feel sick, so he wants to act like a normal 10 year old boy. He can't be a normal 10 year old boy, so he is becoming moody. He has his ups and downs.
Yesterday, we were at the clinic for a routine check. His counts were holding steady. His platelets were at 26. His hemoglobin was at 7.4. Still very low, but no longer dropping. His granulcytes were back down to .5, which is kind of the cut of mark for being able to be around people. While none of the counts were good, they were all acceptable. He is not getting better, but he is also not getting any worse.
The doctor suggested that we get Simon into the dentist to get his teeth cleaned. It would need to be done before he would be able to have the transplant. I took him in last night. One hour before his appointment, he had to have 2000 milligrams of amoxicillin. He had 8 HUGE pills that he had to CHEW! (The smell alone made me want to gag!) He had a hard time getting them down, but once they were down, he was able to keep them down. When they do dental work, bacteria enters the blood stream, so the antibiotics needed to be there to combat anything that might harm Simon. Simon, of course, bled more than normal during the cleaning, but nothing that required any special measures.
Today, I was able to take a break from the medical world and work. It felt good to be back at the school. I love being able to be an occasional part of the incredible work they are doing there. It also was a much needed break.
Simon's doctor was going to talk to the transplant team today. Hopefully, we will know more when we go in on Thursday. Tomorrow will be 6 weeks from the beginning of this journey, 5 weeks from the "official" diagnosis and his first hospital stay. On February 10th, he began his immune suppression treatments. Today, we are 4 weeks from the beginning of that treatment.
How can only 6 weeks feel like a lifetime? In the scheme of things, we are only at the beginning, and yet I am already so very weary! How will I be able to complete this journey? We are probably at least a month away from transplant, perhaps even 2 or 3 months. The transplant journey itself will be another 3 1/2 months and that will be away from home! At least on this part of the journey, we are able to sleep in our own beds most nights and we are together as a family.
As transplant is looking more and more likely, I am trying to learn as much about it as possible. God will have to give me the gift of wisdom for the decisions ahead. On Monday morning, I learned that Children's Hospital in Denver has only done 1 bone marrow transplant for severe aplastic anemia. They have performed a total of only 185 bone marrow transplants. The data is as current as December 31, 2008. That makes me nervous!
Our other option for a hospital at this time would be the Children's Hospital in Seattle, which is part of the Seattle Cancer Care Alliance. They are a leader in bone marrow transplants and have performed 61 for severe aplastic anemia and a total of 2211 bone marrow transplants. I have family in Seattle and a small group of friends out there. Statistically, I like that option much better.
While I do have family and friends in Seattle, my strongest support system is here in Colorado. Denver is only an hour away from home, so I would be able to take turns staying in Denver. Both Bob and Mom would be able to be with Simon for periods of time, allowing me to spend some time at home with the other 4 children. The other children would be able to go to Denver on the week-ends to see their brother. Emotionally, I do not know if I would be able to cope with being away from my children for 3 1/2 months. I worry about the toll that would have on Warren, Oliver, Ezri, and Beau. It is going to be hard enough only seeing them on week-ends.
And then a part of me says that with so very much at stake, Simon's very life, how can I not give up 3 1/2 months of being with the other kids? My heart is telling me to stick with Denver, but my head is screaming for Seattle. I need wisdom like I have never needed it before!
Then those blasted statistics have been very discouraging. Simon needs the gift of a matched donor among his siblings. With a sibling match, survival rate at 5 years out is 80-90%. With a matched, unrelated donor, survival rate drops significantly to only 60%. I have to constantly remind myself that my son is not a statistic. He is a living, breathing human being, and he is my child. Regardless of what the statistics say, I can never lose sight of the gift of hope.
This past week has been filled with a combination of hope and discouragement. Moments of joy and moments of sorrow. I have to recognize the joy for the gift that it is, and I have to find strength in the knowledge that sorrow may last for the night, but joy comes in the morning.
And I have to give thanks.
Friday, March 6, 2009
Looking to the Sun
It is 3:30 on Friday afternoon, and I am SO ready for the week-end! I am sitting at the clinic, typing this, while Simon gets his once a month dose of pentamadien and another dose of nuepegen. This is the fifth day in a row that we have been here!
Yesterday, I was here with all of the kids for HLA blood typing, to determine whether or not any of Simon's siblings are a match for Simon's bone marrow transplant. They had to take 4 LARGE vials of blood from each of the kids.
Beau went first, and he was such a trooper. He loves having his blood taken! He watched while they poked him and he watched as they drained his blood. He thought it was pretty cool!
Ezri was next. She was nervous, but did fantastic. She did not like being poked, but didn't fuss at all. As they filled the last vial, she started feeling dizzy. Her face had totally turned green! We got her some juice, and she perked right up. (That and the promise of being able to chose a toy from the treasure box when all 4 kids were done!)
Oliver and Warren were the last to go. To them, it was no big deal.
Yesterday, the clinic was very busy, and I had all 5 kids with me, so I did not have the opportunity to ask all the questions that needed asking. Today, I came prepared with the 2 big ones.
It will take 1-2 weeks to learn if we have a match. In the mean time, Simon will continue to visit the clinic regularly. We had been coming twice a week, but this week, we have been in every day, due to his low counts. The neupegen he has been receiving is to boost his granulcytes, to prevent infection.
The pentamadein is to prevent bacteria from overtaking his lungs. He gets that through the IV every 4 weeks. It takes about an hour for that medicine and 30 minutes for the neupegen.
While it has been a very long and busy week, it has also been a good week. Simon's energy levels have been fantastic. (I only wish I could keep up with him!) He got the same cold the rest of the family has been fighting, but he didn't get as sick as the rest of us! His hemoglobin had been dropping steadily, but it appears to have leveled off. It has been right at or near 7 for 3 days in a row now. We have made it through another week without a blood transfusion. As long as his hemoglobin remains steady AND he is not symptomatic, he will be able to avoid transfusion.
Transfusions have to be done in the hospital. The more he has, the more problems he will have with his transplant.
The next major hurdle we will be facing is the transplant. It will require 4-8 weeks of in hospital stay. Not only that, but he will be required to stay up in Denver for 100 days! They do have a place for transplant patients and family to stay during those 100 days. As long as Bob is in town, we will be able to split our time between Denver and home with the other kids.
If I thought life could not get any more complicated, I was sadly mistaken. Warren came home from school with a letter from the city, notifying us of the fact that his bus will be canceled, as of April 5. All I can do is laugh!
The absurdity of it all just strikes me as funny, for some odd reason. God has more than taken care of our needs from the day we first went to the doctor's office to have a rash looked at. Needs we did not even realize we would have, have been met in so many unexpected ways. Not only have our physical needs been met, but also our emotional and spiritual needs. We have met many new people along the way, and been so blessed by the generosity of strangers who are becoming fast friends!
I am sitting back and laughing, wondering what new and wonderful plan God has for us in the coming months. I wonder what miracle He will pull out of the hat to get Warren to school and manage the 3 kids at PPSEL and Simon and one parent up in Denver. I have no idea how it will happen, but God is so good, and He will once again surprise and amaze us. (I kind of feel like a little kid at Christmas, wondering what wonderful gift I will unwrap next!)
The 4 healthy children received a package in the mail this week from an organization called SuperSibs. It is a group that acknowledges the difficulties the other kids in a family go through when a critical illness strikes a sibling. In the package was a book for teens on how to cope when a brother or sister is diagnosed with cancer.
In thumbing through the book, I found a quote that really struck me as profound and simple at the same time. It spoke volumes of truth and has helped to keep me focused on the positive. "Look to the sun, and the shadows fall behind you." As I have turned my heart to God, my sun, I have witnessed the shadows fall behind me!
Yesterday, I was here with all of the kids for HLA blood typing, to determine whether or not any of Simon's siblings are a match for Simon's bone marrow transplant. They had to take 4 LARGE vials of blood from each of the kids.
Beau went first, and he was such a trooper. He loves having his blood taken! He watched while they poked him and he watched as they drained his blood. He thought it was pretty cool!
Ezri was next. She was nervous, but did fantastic. She did not like being poked, but didn't fuss at all. As they filled the last vial, she started feeling dizzy. Her face had totally turned green! We got her some juice, and she perked right up. (That and the promise of being able to chose a toy from the treasure box when all 4 kids were done!)
Oliver and Warren were the last to go. To them, it was no big deal.
Yesterday, the clinic was very busy, and I had all 5 kids with me, so I did not have the opportunity to ask all the questions that needed asking. Today, I came prepared with the 2 big ones.
It will take 1-2 weeks to learn if we have a match. In the mean time, Simon will continue to visit the clinic regularly. We had been coming twice a week, but this week, we have been in every day, due to his low counts. The neupegen he has been receiving is to boost his granulcytes, to prevent infection.
The pentamadein is to prevent bacteria from overtaking his lungs. He gets that through the IV every 4 weeks. It takes about an hour for that medicine and 30 minutes for the neupegen.
While it has been a very long and busy week, it has also been a good week. Simon's energy levels have been fantastic. (I only wish I could keep up with him!) He got the same cold the rest of the family has been fighting, but he didn't get as sick as the rest of us! His hemoglobin had been dropping steadily, but it appears to have leveled off. It has been right at or near 7 for 3 days in a row now. We have made it through another week without a blood transfusion. As long as his hemoglobin remains steady AND he is not symptomatic, he will be able to avoid transfusion.
Transfusions have to be done in the hospital. The more he has, the more problems he will have with his transplant.
The next major hurdle we will be facing is the transplant. It will require 4-8 weeks of in hospital stay. Not only that, but he will be required to stay up in Denver for 100 days! They do have a place for transplant patients and family to stay during those 100 days. As long as Bob is in town, we will be able to split our time between Denver and home with the other kids.
If I thought life could not get any more complicated, I was sadly mistaken. Warren came home from school with a letter from the city, notifying us of the fact that his bus will be canceled, as of April 5. All I can do is laugh!
The absurdity of it all just strikes me as funny, for some odd reason. God has more than taken care of our needs from the day we first went to the doctor's office to have a rash looked at. Needs we did not even realize we would have, have been met in so many unexpected ways. Not only have our physical needs been met, but also our emotional and spiritual needs. We have met many new people along the way, and been so blessed by the generosity of strangers who are becoming fast friends!
I am sitting back and laughing, wondering what new and wonderful plan God has for us in the coming months. I wonder what miracle He will pull out of the hat to get Warren to school and manage the 3 kids at PPSEL and Simon and one parent up in Denver. I have no idea how it will happen, but God is so good, and He will once again surprise and amaze us. (I kind of feel like a little kid at Christmas, wondering what wonderful gift I will unwrap next!)
The 4 healthy children received a package in the mail this week from an organization called SuperSibs. It is a group that acknowledges the difficulties the other kids in a family go through when a critical illness strikes a sibling. In the package was a book for teens on how to cope when a brother or sister is diagnosed with cancer.
In thumbing through the book, I found a quote that really struck me as profound and simple at the same time. It spoke volumes of truth and has helped to keep me focused on the positive. "Look to the sun, and the shadows fall behind you." As I have turned my heart to God, my sun, I have witnessed the shadows fall behind me!
Wednesday, March 4, 2009
Wednesday Night Update
Just a quick update after today's appointment.
Simon's platelets are up slightly. They seem to be the part of his counts that varies the most.
His white count hasn't changed from yesterday. The granulcytes are exactly where they were yesterday. The doctor said it may take up to a week for the nuepregen to start working.
His hemoglobin continues to fall. If it continues to drop, he will have to go to the hospital on Friday for a transfusion. Because it is so low, something like a nose bleed will be all the more dangerous.
Given Simon's counts, he should be a very sick little boy. He should be experiencing headaches and extreme fatigue. His bruising should be getting worse, and nosebleeds should not be stopping. God is so good, and I can tell He has sent his angels to watch over Simon. His energy level continues to be good. He has not had any headaches since the first few weeks. While he has had a few nose bleeds, most have been minor and have stopped quickly. He still has bruises, but they appear to be lessening.
I am remembering my morning walk and the hope of spring in the green grass peaking out from the ground. And I shall go to bed tonight full of hope of Simon's recovery!
Simon's platelets are up slightly. They seem to be the part of his counts that varies the most.
His white count hasn't changed from yesterday. The granulcytes are exactly where they were yesterday. The doctor said it may take up to a week for the nuepregen to start working.
His hemoglobin continues to fall. If it continues to drop, he will have to go to the hospital on Friday for a transfusion. Because it is so low, something like a nose bleed will be all the more dangerous.
Given Simon's counts, he should be a very sick little boy. He should be experiencing headaches and extreme fatigue. His bruising should be getting worse, and nosebleeds should not be stopping. God is so good, and I can tell He has sent his angels to watch over Simon. His energy level continues to be good. He has not had any headaches since the first few weeks. While he has had a few nose bleeds, most have been minor and have stopped quickly. He still has bruises, but they appear to be lessening.
I am remembering my morning walk and the hope of spring in the green grass peaking out from the ground. And I shall go to bed tonight full of hope of Simon's recovery!
Hope in the midst of Despair
We have had a very mild winter in Colorado this year. The mild temperatures have been nice. Our heating bill has been almost affordable! The mild days have been a joy, and it has been nice to avoid the days of being stuck at home because of the snow.
Unfortunately, the fantastic winter has created a new problem going forward. As I look out over our pastures, all is brown and dry. The blowing winds add to the fire danger. If we don't get some moisture, it will be a challenge to feed the horses come summer. Without snow or rain, the grass will not grow adequately enough to provide the nourishment they need. Not only will I have to buy hay, but also, the price of hay will be high.
One of my favorite things about Colorado has been the spring times. In the fall, everything turns brown. Then we have winter, mixed with sunshine and snow. In the spring, we get the rains or snow storms, that move through rapidly. (March is actually our heaviest snow fall month.) After the moisture, the world comes to life. All that was brown and dead looking, is suddenly green and bright and full of hope. As the world around me springs to life, I can't help but be full of joy and hope myself.
This winter has been so void of moisture that I have been fearful of missing the spring awakening. Just this morning, I was thinking about picking up some sprinklers for watering the grasses and trees near the house. The brown of the fields matched the feelings in my heart.
When I returned home from dropping off the kids this morning, I had to cross the fields to fetch a stubborn horse. The sun was shinning, it was warm, and the winds were calm. Today is a busy day, but I didn't mind too much. (Breaks from all things medical are too rare these days!)
Bob drove me down to the horse, so I only had to walk back up the hill. As I said, it was a great morning for a walk. I needed the excuse to go out and do it!
Catching the horse was easy. He love peppermints, and as soon as he heard the crinkle of the wrapper in my hand, he came right to me and let me put the halter on.
Then we began the hike. From the house, looking down on the pasture, everything looks so brown and bleak. As I walked Shaw, I saw something entirely different. Yeah, the grass was brown, but from my new vantage point, I was able to see the green poking up from the ground.
In spite of the dryness, in spite of the despair, hope is springing up from the ground. When I stood back and looked at the whole pasture, all I saw was the desolation. From up close, however, I saw new growth. I saw the hope that comes with spring.
In life, sometimes we need the eagles view, to see the whole picture. Other times, we need to look more closely, at the smaller accomplishments.
When I look at this week as a whole, I am overwhelmed and discouraged. I need to look at the smaller successes and rejoice.
Simon has made it through the last month with only 1 red blood transfusion. Another one may be coming up soon, but for now, I need to focus on how long he has been able to go without!
Simon has a cold, but it is getting better, and it never did get bad! His white counts are so low that it should have sent him to the hospital!
Bob will probably be back on the road soon, but we have had him home for the past month, when we needed him most!
Warren may be losing his bus come April, but God will show us a way through that too!
One friend reminded me yesterday that "If He leads you to it, He will bring you through it."
Another friend sent me some powerful words from a devotional. "O my child, do not weep, I am doing a beautiful work. Stress and pressure and pain are often the path to victory and understanding. I am in the midst, and I am a strong deliverer. You need not be concerned. Courage is the greatest contribution you can make at this point. To be strong now will make the path of recovery easier. Faith is an essential ingredient in every solution...often it is the solution itself. Never underestimate the power of Faith. Hold fast. Trust. _Unseen angels assist you._ Doors are opening to let you pass into safely"
And as the green grass is peaking up from the ground, I am seeing hope spring up in the midst of despair. I am seeking the courage needed to reach those doors that lead to safety. I am trusting that faith will indeed be the solution, and I am holding fast!
"The Lord is my shepherd, I shall not me in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:1-3a.
Unfortunately, the fantastic winter has created a new problem going forward. As I look out over our pastures, all is brown and dry. The blowing winds add to the fire danger. If we don't get some moisture, it will be a challenge to feed the horses come summer. Without snow or rain, the grass will not grow adequately enough to provide the nourishment they need. Not only will I have to buy hay, but also, the price of hay will be high.
One of my favorite things about Colorado has been the spring times. In the fall, everything turns brown. Then we have winter, mixed with sunshine and snow. In the spring, we get the rains or snow storms, that move through rapidly. (March is actually our heaviest snow fall month.) After the moisture, the world comes to life. All that was brown and dead looking, is suddenly green and bright and full of hope. As the world around me springs to life, I can't help but be full of joy and hope myself.
This winter has been so void of moisture that I have been fearful of missing the spring awakening. Just this morning, I was thinking about picking up some sprinklers for watering the grasses and trees near the house. The brown of the fields matched the feelings in my heart.
When I returned home from dropping off the kids this morning, I had to cross the fields to fetch a stubborn horse. The sun was shinning, it was warm, and the winds were calm. Today is a busy day, but I didn't mind too much. (Breaks from all things medical are too rare these days!)
Bob drove me down to the horse, so I only had to walk back up the hill. As I said, it was a great morning for a walk. I needed the excuse to go out and do it!
Catching the horse was easy. He love peppermints, and as soon as he heard the crinkle of the wrapper in my hand, he came right to me and let me put the halter on.
Then we began the hike. From the house, looking down on the pasture, everything looks so brown and bleak. As I walked Shaw, I saw something entirely different. Yeah, the grass was brown, but from my new vantage point, I was able to see the green poking up from the ground.
In spite of the dryness, in spite of the despair, hope is springing up from the ground. When I stood back and looked at the whole pasture, all I saw was the desolation. From up close, however, I saw new growth. I saw the hope that comes with spring.
In life, sometimes we need the eagles view, to see the whole picture. Other times, we need to look more closely, at the smaller accomplishments.
When I look at this week as a whole, I am overwhelmed and discouraged. I need to look at the smaller successes and rejoice.
Simon has made it through the last month with only 1 red blood transfusion. Another one may be coming up soon, but for now, I need to focus on how long he has been able to go without!
Simon has a cold, but it is getting better, and it never did get bad! His white counts are so low that it should have sent him to the hospital!
Bob will probably be back on the road soon, but we have had him home for the past month, when we needed him most!
Warren may be losing his bus come April, but God will show us a way through that too!
One friend reminded me yesterday that "If He leads you to it, He will bring you through it."
Another friend sent me some powerful words from a devotional. "O my child, do not weep, I am doing a beautiful work. Stress and pressure and pain are often the path to victory and understanding. I am in the midst, and I am a strong deliverer. You need not be concerned. Courage is the greatest contribution you can make at this point. To be strong now will make the path of recovery easier. Faith is an essential ingredient in every solution...often it is the solution itself. Never underestimate the power of Faith. Hold fast. Trust. _Unseen angels assist you._ Doors are opening to let you pass into safely"
And as the green grass is peaking up from the ground, I am seeing hope spring up in the midst of despair. I am seeking the courage needed to reach those doors that lead to safety. I am trusting that faith will indeed be the solution, and I am holding fast!
"The Lord is my shepherd, I shall not me in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul." Psalm 23:1-3a.
Tuesday, March 3, 2009
Fear of Drowning, or Looking for Hope.
I remember a day at the beach from my childhood. I don't know how old I was, but I hadn't started school yet. My mom and one of my aunts were enjoying the sun. I was playing at the water's edge. The waves would come up and go back out. I was at the line between the dry sand and the surf. What water was there, had to have been less than one inch deep. I remember the water coming in and as it went back out, I felt like I was being pulled out to sea with it. I can remember the sensation as if it was yesterday. I remember feeling small and frightened. I felt paralyzed, unable to pull against the tide to the safety of the dry sand. I knew I was drowning and there was nothing I could do to stop it!
Today, I have that same sensation. I feel that I am being pulled out to see, and no matter how hard I fight against it, I can't stop the tremendous force of the ocean. I am overwhelmed by the circumstances life has thrown at me, and I feel like I am drowning.
Yesterday morning, Simon's blood counts were not good. While his platelets were up slightly, his red count had dropped. His granulcytes level had dropped below the 500 threshold. White cells only last a very short time, so they cannot be transfused. There is a new medicine available that is supposed to help increase the granulcytes. We are blessed, in that our insurance does not require a prior authorization for the medicine. Simon received his first dose yesterday through his port.
The hope was that today his granulcytes would be above the 500 mark, but they have hardly budged, so he received another round today. His hemoglobin has dropped low enough that a transfusion is likely. If it continues to fall, we will have to schedule a trip to the hospital for another transfusion.
On Thursday afternoon, the entire family has to go in for blood work, looking for a bone marrow match. I am exhausted and trying to keep my head above water. While my cold is getting better, it still plagues me. I wonder how much more I can endure before I myself collapse. My head is pounding, and I just want to sleep.
Adding to my distress is the knowledge that Bob will be leaving soon. While there is nothing definite, it is looking like he will be back on the road again soon. Also, come April, I will have to figure out how to get Warren to and from school, as the bus he rides is scheduled to be canceled.
As difficult as the last 4 weeks have been, I am trying to wrap my head around doing this as a single parent. How will I be able to get the 4 healthy kids where they need to be and take care of Simon? Come April, I'll be looking at the added 2 trips across town to get Warren to and from school. April will also be about the time I'll need to add trips to Denver to the schedule. The transplant team is up at Children's Hospital in Denver, and I don't know how I will do it.
Tomorrow, I have a meeting at Warren's school. It is the meeting that was supposed to take place the same day that we ended up in the ER for Simon's rash. The day this whole ordeal began. The meeting is to come up with an advanced learning plan for Warren. He scored in the 99th percentile on his cognitive abilities test, and the school wants to make sure they are meeting his needs as a gifted learner.
Warren is also my son, and I am excited for the prospects for his future. While I want to be celebrating his achievement, all I can think about is how I can make the meeting there and get Simon to his unplanned appointment, not to mention picking the other 3 kids up from school on the other side of town. How will I do this next month when Bob is gone? If I feel like I am drowning now, how will I cope then?
In my exhausted state, it is hard to find hope, and yet search for it I must. I find hope in the fact that Simon is in good spirits. I find hope in the fact that according to his blood counts, he should be a very sick little boy, and yet he is not. I find hope in the fact that his hemoglobin is so low that he should barely be getting off of the couch, and yet he continues to play with the other kids. He is up and about and active.
And finally, I find hope in the knowledge that God is bigger than the boogie man. He has yet to lead me anywhere that He did not also provide me with the tools necessary to make the journey. While I may be out of gas, God's tank is full, and never runs dry. He is stronger than the strongest rip tide, and I only need hold out my hand and He will save me from drowning.
Today, I have that same sensation. I feel that I am being pulled out to see, and no matter how hard I fight against it, I can't stop the tremendous force of the ocean. I am overwhelmed by the circumstances life has thrown at me, and I feel like I am drowning.
Yesterday morning, Simon's blood counts were not good. While his platelets were up slightly, his red count had dropped. His granulcytes level had dropped below the 500 threshold. White cells only last a very short time, so they cannot be transfused. There is a new medicine available that is supposed to help increase the granulcytes. We are blessed, in that our insurance does not require a prior authorization for the medicine. Simon received his first dose yesterday through his port.
The hope was that today his granulcytes would be above the 500 mark, but they have hardly budged, so he received another round today. His hemoglobin has dropped low enough that a transfusion is likely. If it continues to fall, we will have to schedule a trip to the hospital for another transfusion.
On Thursday afternoon, the entire family has to go in for blood work, looking for a bone marrow match. I am exhausted and trying to keep my head above water. While my cold is getting better, it still plagues me. I wonder how much more I can endure before I myself collapse. My head is pounding, and I just want to sleep.
Adding to my distress is the knowledge that Bob will be leaving soon. While there is nothing definite, it is looking like he will be back on the road again soon. Also, come April, I will have to figure out how to get Warren to and from school, as the bus he rides is scheduled to be canceled.
As difficult as the last 4 weeks have been, I am trying to wrap my head around doing this as a single parent. How will I be able to get the 4 healthy kids where they need to be and take care of Simon? Come April, I'll be looking at the added 2 trips across town to get Warren to and from school. April will also be about the time I'll need to add trips to Denver to the schedule. The transplant team is up at Children's Hospital in Denver, and I don't know how I will do it.
Tomorrow, I have a meeting at Warren's school. It is the meeting that was supposed to take place the same day that we ended up in the ER for Simon's rash. The day this whole ordeal began. The meeting is to come up with an advanced learning plan for Warren. He scored in the 99th percentile on his cognitive abilities test, and the school wants to make sure they are meeting his needs as a gifted learner.
Warren is also my son, and I am excited for the prospects for his future. While I want to be celebrating his achievement, all I can think about is how I can make the meeting there and get Simon to his unplanned appointment, not to mention picking the other 3 kids up from school on the other side of town. How will I do this next month when Bob is gone? If I feel like I am drowning now, how will I cope then?
In my exhausted state, it is hard to find hope, and yet search for it I must. I find hope in the fact that Simon is in good spirits. I find hope in the fact that according to his blood counts, he should be a very sick little boy, and yet he is not. I find hope in the fact that his hemoglobin is so low that he should barely be getting off of the couch, and yet he continues to play with the other kids. He is up and about and active.
And finally, I find hope in the knowledge that God is bigger than the boogie man. He has yet to lead me anywhere that He did not also provide me with the tools necessary to make the journey. While I may be out of gas, God's tank is full, and never runs dry. He is stronger than the strongest rip tide, and I only need hold out my hand and He will save me from drowning.
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