Platelets, the cells that heal, should run 150k to 300k. They last 10 days in the system unless needed. Riley was diagnosed at 4k. Which was why everyone freaked. He could bleed out from a bruise. He had no clotting mechanisms if he scratched himself. He is now at 37,000 which is better than 4000 or as he has bounced around at 9K or 14K last week. 37,000 is much better. 20,000 is considered acute critical. 50,000 is critical. 40,000 is somewhere in between. He would not survive a car wreck, but a bloody nose may be controllable or not. It does show improvement and that is what counts. We are hopeful in a few months he may be up to 150,000.
Most patients though without the bone marrow transplant settle around 60,000 to 80,000. That is not good enough for a normal life. You can get by but it prevents any sort of physical activities. You have to be careful all the time not to hurt yourself. No sprained ankles or wrestling with your brother or children, no biking in case of a fall. This is the dilemma. We hope for above 120,000 or better, then Riley can live a normal life with normal activities.
In a healthy body, White cells should be around 5, ready to fight off bacteria and infections. When you get a cold they can go as high as 10 to 12. White cells only last 10 hours. Riley is at 2.2 which is better than 0.2 which he got to under treatment in isolation in the hospital. 2.2 is up from last weeks 1.4, indicating recovery. he will be able to go out in public once we get to 4. If he is exposed to a cold now it could lead to pneumonia quickly as he has no resistance. Molds and spores are also dangerous for the same reasons. He can't play in the dirt because he can't fight off parasites.
Red cells provide oxygen to the body and brain. They last 100 to 150 days.
Riley got a horrible head ache at 6.7. That seems to be his tolerance level. The doctor liked to push the bone marrow to produce by stressing it with low levels. If he gave red to bring up the numbers the marrow might think it had enough and stop producing more. We were trying to produce as much as possible. A normal body might have 10 to 16. Today the count was 8.1. Now, we don't know what the bump was after his transfusion two weeks ago and red lasts a long time, but again we are hopeful it is an indication of a working system.
Riley was taking red blood every two or three weeks. We test him in another two weeks to make sure the number is still going up. There are some other numbers that indicate young cell production which are increasing. The question is will Riley continue to produce and at levels that will replace lost production. Can he reach normal?
Cyclosporane is very hard on the kidneys and liver and Riley will be on it for a few more months. It is an anti rejection medication good for when you get transfusions or transplants or when your body might be attacking its own marrow. He has to drink a lot of water to keep his organs flushed out. So, Riley is not out of the woods by any means, but the news is good if he continues to progress in this direction. two weeks is long enough and without the blood booster shot for the whites for three weeks to show this is Riley and not the drugs or some one Else's blood, at least for the platelets and the white.
Platelets are the last to turn, traditionally, the most sensitive to everyday needs. when the body is using up white and platelets and reds on a daily basis and yet the numbers are still better than two weeks prior, we feel the tide is finally turning in our favor, for now.
I still feel tense as if waiting for the other shoe to fall. but for now time seems to be on our side.
God bless modern medicine.
Thursday, April 29, 2010
Wow
The numbers today
Platelets 37
red 8.1
Gran (anc) 1.4
white 2.2
Great numbers!!!
The Doctor arrived with his hand out for a congratulatory shake. I asked if I could give him a hug instead. I gave him a big hug. The Nurse was there to clean the pick line. Tom had mentioned that he thought the Doctor might want to pull it out now with these numbers. She asks if we are going to pull the line. Earlier the nurse who drew the blood for the CBC (blood tests) had a hard time getting the line open. It had been two weeks since it had last been flushed when we were last in clinic.
So the nurse asks the doctor " Are we pulling the line?" He responds "Why not?" . The line comes out and Riley asks to save it. She puts it in a bio hazard bag for Riley to take home. The Picc is a blue wire about a foot and a half long. The two access ports dangle from the end; one white indicating the smaller of the two lines and the other red for the larger line inside the blue wire.
We go back in one month. The Doctor asked that we get CBC's drawn here in Canby in two weeks just to make sure we stay on target. Riley continues with the magnesium and cyclosporine. He can take regular vitamins now, even vitamins with iron. The drinking of fluids is still very important. Water keeps the kidneys flushed so they are not damaged by the cyclosporine.
I am hopeful that Riley's numbers will reach normal before next fall. This turn is now definitive. Platelets of 37 we haven't seen since Riley got sick. Well he would spike after transfusions but this was all Riley, not someone else.
The other numbers show high cell growth and new production. It will take time to replace all the needed cells, but everything is looking rosy today. Its funny, Tom had us all pick the number again. We were all very conservative and pessimistic. Each of us had one score on target, but none of us had all of them this high.
I asked if Riley could see a dermatologist for his zits. As long as the dermatologist talks to the Doctor before prescribing anything, that would be fine. Retain A is not a choice, though. I think just being able to bath and soak again every day, without Tom or me having to wrap his arm in water proof materials, will help the complexion clear up. I can imagine the tub will be busy tonight with a long soak.
Grandma loves our rain bath shower head. She took a long shower this morning before Riley and I left for the hospital. Good thing she did because Riley will probably claim the bathroom for hours now. Trevor already takes soaks with a good book for long durations. I will need to make Riley take baths while Trevor is at school or there will be huge fights over time in the tub. Bath time is still at 8:00 so we can get lights out by 10:00 pm. Both boys sneak on their lights again until late, but by then Tom and I are asleep.
Tom took Riley with him from the hospital. He wanted to celebrate the good news and the Picc being gone. They look up a model shop on line to get the address, when they arrive the place is closed so they go to the one they know in Oregon City, but it doesn't have the good ones that Tom is looking for. The place tells them of a big store on 82nd. So they stop at Applebees for lunch then go to this new place. Tom loves it. It has just what he has been looking for, The USS Constitution, a three masted sailing ship. Riley is thrilled.
While Tom and Riley are off having fun I go home and take my mother in law out to lunch for our own small celebration. We still will need to be careful, but life is good. I am grateful to be living in this modern age of medicine.
Platelets 37
red 8.1
Gran (anc) 1.4
white 2.2
Great numbers!!!
The Doctor arrived with his hand out for a congratulatory shake. I asked if I could give him a hug instead. I gave him a big hug. The Nurse was there to clean the pick line. Tom had mentioned that he thought the Doctor might want to pull it out now with these numbers. She asks if we are going to pull the line. Earlier the nurse who drew the blood for the CBC (blood tests) had a hard time getting the line open. It had been two weeks since it had last been flushed when we were last in clinic.
So the nurse asks the doctor " Are we pulling the line?" He responds "Why not?" . The line comes out and Riley asks to save it. She puts it in a bio hazard bag for Riley to take home. The Picc is a blue wire about a foot and a half long. The two access ports dangle from the end; one white indicating the smaller of the two lines and the other red for the larger line inside the blue wire.
We go back in one month. The Doctor asked that we get CBC's drawn here in Canby in two weeks just to make sure we stay on target. Riley continues with the magnesium and cyclosporine. He can take regular vitamins now, even vitamins with iron. The drinking of fluids is still very important. Water keeps the kidneys flushed so they are not damaged by the cyclosporine.
I am hopeful that Riley's numbers will reach normal before next fall. This turn is now definitive. Platelets of 37 we haven't seen since Riley got sick. Well he would spike after transfusions but this was all Riley, not someone else.
The other numbers show high cell growth and new production. It will take time to replace all the needed cells, but everything is looking rosy today. Its funny, Tom had us all pick the number again. We were all very conservative and pessimistic. Each of us had one score on target, but none of us had all of them this high.
I asked if Riley could see a dermatologist for his zits. As long as the dermatologist talks to the Doctor before prescribing anything, that would be fine. Retain A is not a choice, though. I think just being able to bath and soak again every day, without Tom or me having to wrap his arm in water proof materials, will help the complexion clear up. I can imagine the tub will be busy tonight with a long soak.
Grandma loves our rain bath shower head. She took a long shower this morning before Riley and I left for the hospital. Good thing she did because Riley will probably claim the bathroom for hours now. Trevor already takes soaks with a good book for long durations. I will need to make Riley take baths while Trevor is at school or there will be huge fights over time in the tub. Bath time is still at 8:00 so we can get lights out by 10:00 pm. Both boys sneak on their lights again until late, but by then Tom and I are asleep.
Tom took Riley with him from the hospital. He wanted to celebrate the good news and the Picc being gone. They look up a model shop on line to get the address, when they arrive the place is closed so they go to the one they know in Oregon City, but it doesn't have the good ones that Tom is looking for. The place tells them of a big store on 82nd. So they stop at Applebees for lunch then go to this new place. Tom loves it. It has just what he has been looking for, The USS Constitution, a three masted sailing ship. Riley is thrilled.
While Tom and Riley are off having fun I go home and take my mother in law out to lunch for our own small celebration. We still will need to be careful, but life is good. I am grateful to be living in this modern age of medicine.
Thursday early
If you get up early enough these days you get to see the sun. The clouds don't seem to arrive until after 7:00 am. I love waking up and seeing blue sky, brief though it is. Today, we woke to some excitement. Nothing gets the children up early in a better mood than something exciting going on. Today the cats had left us a live present in the kitchen.
Trevor went downstairs for breakfast when I heard his voice shout "Mom there is a giant cockroach, no, its a rat" It turned out to be a huge mole behind the garbage can quivering in fear. Now here is the debate. Its animal awareness week at school. I have been hearing lectures from Trevor about animal abuses, torture, drug testing, etc. We can't just kill this poor mole. We will need to get it back outside.
I tell Trevor to get the broom and try to sweep it to the door. That is unsuccessful. Moles can't see and they don't like bright light. The last thing that mole wanted to do was go out the door. Trevor eventually got a bowl from the kitchen and trapped the mole. He carried the animal outside. You could hear the animal's fearful squeals. Once on the grass it started to dig. It was gone in seconds. So, now I have a mole in my yard. Its going to put mole hills everywhere until the cats trap it again.
Meanwhile, we are all up and dressed and ready to go, two hours early to the hospital. Usually it is a rush to get ready and out the door. Not today. We were all up and jazzed by the mole chase. I will have to ask Tom if he saw the mole on the way out the door this morning. Not that it would make any difference. Catching animals falls into one of my job categories. Tom walked by a live snake one morning outside our room. He thought it was one of the boy's toy plastic snakes. Trevor found and identified the snake as living and caught it for us that day also.
If I let him, Trevor would have a room full of all sorts of wonderful animals. While we were at the beach last year, Tom let the pet rabbit Trevor kept in his room out for an afternoon in the back yard. Somehow the rabbit ended up in the neighbor's yard where he has stayed. We occasionally spot him from our upstairs window. The rabbit is much happier and so are we, not having that barn yard smell wafting from Trevor's room.
With Riley, the doctor's wanted to know if we had any exotic pets. No birds or reptiles allowed. The diseases they can carry would be toxic for Riley. So, the mole is gone, but it is spring. Where there was one present there will be more coming. Riley will have a good story for the nurses today. I have to mop the kitchen floor and vacuum just in case.
Trevor went downstairs for breakfast when I heard his voice shout "Mom there is a giant cockroach, no, its a rat" It turned out to be a huge mole behind the garbage can quivering in fear. Now here is the debate. Its animal awareness week at school. I have been hearing lectures from Trevor about animal abuses, torture, drug testing, etc. We can't just kill this poor mole. We will need to get it back outside.
I tell Trevor to get the broom and try to sweep it to the door. That is unsuccessful. Moles can't see and they don't like bright light. The last thing that mole wanted to do was go out the door. Trevor eventually got a bowl from the kitchen and trapped the mole. He carried the animal outside. You could hear the animal's fearful squeals. Once on the grass it started to dig. It was gone in seconds. So, now I have a mole in my yard. Its going to put mole hills everywhere until the cats trap it again.
Meanwhile, we are all up and dressed and ready to go, two hours early to the hospital. Usually it is a rush to get ready and out the door. Not today. We were all up and jazzed by the mole chase. I will have to ask Tom if he saw the mole on the way out the door this morning. Not that it would make any difference. Catching animals falls into one of my job categories. Tom walked by a live snake one morning outside our room. He thought it was one of the boy's toy plastic snakes. Trevor found and identified the snake as living and caught it for us that day also.
If I let him, Trevor would have a room full of all sorts of wonderful animals. While we were at the beach last year, Tom let the pet rabbit Trevor kept in his room out for an afternoon in the back yard. Somehow the rabbit ended up in the neighbor's yard where he has stayed. We occasionally spot him from our upstairs window. The rabbit is much happier and so are we, not having that barn yard smell wafting from Trevor's room.
With Riley, the doctor's wanted to know if we had any exotic pets. No birds or reptiles allowed. The diseases they can carry would be toxic for Riley. So, the mole is gone, but it is spring. Where there was one present there will be more coming. Riley will have a good story for the nurses today. I have to mop the kitchen floor and vacuum just in case.
Wednesday, April 28, 2010
AAH
Wednesday, I took advantage of my mother in law being with us and took off for the day. A friend was moving apartments and I offered my help. My jeep can hold a lot more than her small compact. We wanted to move all the fragile and breakable items, leaving the big heavy furniture for the church volunteers on Saturday.
Being an apartment dweller, she didn't have a whole lot of stuff in general. It was an easy day other than the stairs at both apartments. I am glad I am not part of the heavy lifting crew on Saturday. We discussed furniture placement. Since it is volunteers moving her, she wont be able to fuss with placement. Once these men set something down, that is where it will stay. The new apartment is not in the best of areas, but the price was right. It is also an older facility so it needs a little TLC, but the price was right. There were not very many units and they already know half the residents through church. That has some value, knowing your neighbors and watching out for them, in a good way.
After a few hours of work we broke for lunch. Most of the small sit abouts were now located at the new residence. We reused the boxes and were able to make two full runs to the new house. The boxes wont be in the way when the big items arrive, since we were able to unpack into cabinets and closets. We probably could have done another trip, but I think I wore my friend out with my energy for the day. She bought me lunch as a thank you.
I enjoyed getting out and doing something productive. It was lovely to have breathing room. The rain came, but never during an inconvenient time. We were either inside packing or unpacking. The whole day was lovely.
Being an apartment dweller, she didn't have a whole lot of stuff in general. It was an easy day other than the stairs at both apartments. I am glad I am not part of the heavy lifting crew on Saturday. We discussed furniture placement. Since it is volunteers moving her, she wont be able to fuss with placement. Once these men set something down, that is where it will stay. The new apartment is not in the best of areas, but the price was right. It is also an older facility so it needs a little TLC, but the price was right. There were not very many units and they already know half the residents through church. That has some value, knowing your neighbors and watching out for them, in a good way.
After a few hours of work we broke for lunch. Most of the small sit abouts were now located at the new residence. We reused the boxes and were able to make two full runs to the new house. The boxes wont be in the way when the big items arrive, since we were able to unpack into cabinets and closets. We probably could have done another trip, but I think I wore my friend out with my energy for the day. She bought me lunch as a thank you.
I enjoyed getting out and doing something productive. It was lovely to have breathing room. The rain came, but never during an inconvenient time. We were either inside packing or unpacking. The whole day was lovely.
Monday, April 26, 2010
Monday
Well, the toilet plugged downstairs. I couldn't get it unplugged. I plunged it and let it sit overnight and tried again. We put in Drano. Nothing worked. I found water under the kitchen sink, also. So I have hired a plumber to come in to fix it all. They will probably need to remove the toilet or snake the main line. Tom says these days that his time is more valuable than doing these repairs himself. So I have hired a plumber and I wait for him to arrive.
"Afternoon", any time from 12:00 pm to 5:30 pm. We wait for the plumber. I would have had to be here anyway since it is Monday and the Tutor is coming. My mother in law is staying the week with us. I wanted her to meet the tutor as she will back me up on Friday when I am going on a field trip with Trevor, as the designated adult that needs to be here during tutoring.
Mean while everyone has to go upstairs to use the toilet. My mother in law is getting some great exercise. she has bad knees. Today, her knees have begun to ache. Her doctor would be proud of her for doing the stairs. By the end of the week, she will be in great shape. I think we will all be happy to get the downstairs toilet repaired, though.
We stare at Riley intently, each day. Trying to guess his blood levels. Tom is planning to attend Thursday's meeting with the doctor. May is next week. If we are still getting transfusions, then we will have to address bone marrow shortly. I got my notice that the national bone marrow registry received my sample kit and are processing the results. It takes six weeks to be officially added. I have no idea why it takes that long. When they did Trevor in the hospital it took 6 days. I was told 10 days is standard. Well, its done and in the process.
Tuesday next week is the day of the blood drive 11:00-4:00. I am hopeful we have 44 people registered. Last time I heard we still needed 15 more. This is the last week to preregister.
I have been gardening in this lovely weather. Clean up Canby was last week, when you get to put all your bulk items out for pick up free of charge. One of my neighbors threw out pretreated lumber from her raised beds, she removed from her yard. It was in great condition, so I dragged the wood home to my house and have been installing these 2 x6 10 foot lengths on edge as barriers for my planting beds and grass. It will look lovely when it is all done. I will stop removing grass also. Tom was commenting on the shrinking grass lawn every time I edged the yard. Getting rid of the grass is my eventual plan, but I am doing it in stages and I have to come up with the structural replacements as I go along. I can't just rip out and leave it bare.
I received a couple azaleas as gifts recently. They were on my kitchen window cill. I put them in the ground in the front yard. Hopefully they will survive. It is almost time to turn on my sprinkler system. I went looking for tomatoes today. Those are the next things that need to go in to the garden. The planting beds are turned and ready.
So I try nurturing my garden to burn energy while we sit at home waiting for Thursday. It feels great to get physical with the yard. Free is good too.
"Afternoon", any time from 12:00 pm to 5:30 pm. We wait for the plumber. I would have had to be here anyway since it is Monday and the Tutor is coming. My mother in law is staying the week with us. I wanted her to meet the tutor as she will back me up on Friday when I am going on a field trip with Trevor, as the designated adult that needs to be here during tutoring.
Mean while everyone has to go upstairs to use the toilet. My mother in law is getting some great exercise. she has bad knees. Today, her knees have begun to ache. Her doctor would be proud of her for doing the stairs. By the end of the week, she will be in great shape. I think we will all be happy to get the downstairs toilet repaired, though.
We stare at Riley intently, each day. Trying to guess his blood levels. Tom is planning to attend Thursday's meeting with the doctor. May is next week. If we are still getting transfusions, then we will have to address bone marrow shortly. I got my notice that the national bone marrow registry received my sample kit and are processing the results. It takes six weeks to be officially added. I have no idea why it takes that long. When they did Trevor in the hospital it took 6 days. I was told 10 days is standard. Well, its done and in the process.
Tuesday next week is the day of the blood drive 11:00-4:00. I am hopeful we have 44 people registered. Last time I heard we still needed 15 more. This is the last week to preregister.
I have been gardening in this lovely weather. Clean up Canby was last week, when you get to put all your bulk items out for pick up free of charge. One of my neighbors threw out pretreated lumber from her raised beds, she removed from her yard. It was in great condition, so I dragged the wood home to my house and have been installing these 2 x6 10 foot lengths on edge as barriers for my planting beds and grass. It will look lovely when it is all done. I will stop removing grass also. Tom was commenting on the shrinking grass lawn every time I edged the yard. Getting rid of the grass is my eventual plan, but I am doing it in stages and I have to come up with the structural replacements as I go along. I can't just rip out and leave it bare.
I received a couple azaleas as gifts recently. They were on my kitchen window cill. I put them in the ground in the front yard. Hopefully they will survive. It is almost time to turn on my sprinkler system. I went looking for tomatoes today. Those are the next things that need to go in to the garden. The planting beds are turned and ready.
So I try nurturing my garden to burn energy while we sit at home waiting for Thursday. It feels great to get physical with the yard. Free is good too.
Thursday, April 22, 2010
Thursday pass
Today we do not have to go to the doctor. He is giving us a pass. Riley received fresh platelets and blood last week even though platelets were at 14, so we could try to skip our first Thursday. Tom and I both wish we could at least see the numbers. It is a long wait, two weeks. it does save our insurance money. Each Thursday visit runs around $1800 just for showing up and the blood work. If Riley needs blood or platelets the bill goes to $2600 plus.
So today I have Riley helping me clean the house. He is after the game Spore, which runs about $50. My mother in law is coming to visit, so I have to clean the house. Riley negotiated a fee for helping me. He is vacuuming and putting toys away. We will see how far we get. I sprinkled carpet freshener on last night before bed and mopped the kitchen up. I also did the powder room and the boys bathroom. Today I want to tackle the room She will be staying in.
The guest room has been the boy's playroom for a while. When we cleaned out Riley's room I did not put everything back in it. It is easier if the boys don't have toys in their rooms. The messes are minimized. Eventually I need to tackle Trevor's room. I still have the flooring to put in, which is stacked in the guest room. I will need to find a new home for that flooring. I don't want to carry it back down to the garage again. It is ready to install. I just need to motivate. Trevor has really big furniture in his room.
So we will keep today manageable and just tackle Grandma's room, so it looks nice for her visit. Even the little boys next door who come in to play in that room tell me "It's messy". I did not build that big shelving unit yet. I found in the garage a plastic industrial shelving unit I was under utilized and brought it up to the room for the toys. It helped. But my boys have a lot of stuff, all treasures that can't be disposed of. So I stare at the space trying to figure out where I want their toys to land while we have visitors.
We are also hoping friends are coming for memorial weekend. Another reason to tackle that room. Martha Stewart said there is always that one room that holds everything and is just a challenge.
The thought crosses my mind to go up into the attic. I could put in a pull down ladder and have storage up above. If it is easily accessible by stairs then it would be workable. But then where to put the stairs? The guest room is most logical. I am dwelling on the thought. These new houses have engineered trusses which means knee beams come down shrinking the usable spaces. I think I will go peak up into the access panel now. I love easy projects. This one may not be doable, but I wont know until I look.
So today I have Riley helping me clean the house. He is after the game Spore, which runs about $50. My mother in law is coming to visit, so I have to clean the house. Riley negotiated a fee for helping me. He is vacuuming and putting toys away. We will see how far we get. I sprinkled carpet freshener on last night before bed and mopped the kitchen up. I also did the powder room and the boys bathroom. Today I want to tackle the room She will be staying in.
The guest room has been the boy's playroom for a while. When we cleaned out Riley's room I did not put everything back in it. It is easier if the boys don't have toys in their rooms. The messes are minimized. Eventually I need to tackle Trevor's room. I still have the flooring to put in, which is stacked in the guest room. I will need to find a new home for that flooring. I don't want to carry it back down to the garage again. It is ready to install. I just need to motivate. Trevor has really big furniture in his room.
So we will keep today manageable and just tackle Grandma's room, so it looks nice for her visit. Even the little boys next door who come in to play in that room tell me "It's messy". I did not build that big shelving unit yet. I found in the garage a plastic industrial shelving unit I was under utilized and brought it up to the room for the toys. It helped. But my boys have a lot of stuff, all treasures that can't be disposed of. So I stare at the space trying to figure out where I want their toys to land while we have visitors.
We are also hoping friends are coming for memorial weekend. Another reason to tackle that room. Martha Stewart said there is always that one room that holds everything and is just a challenge.
The thought crosses my mind to go up into the attic. I could put in a pull down ladder and have storage up above. If it is easily accessible by stairs then it would be workable. But then where to put the stairs? The guest room is most logical. I am dwelling on the thought. These new houses have engineered trusses which means knee beams come down shrinking the usable spaces. I think I will go peak up into the access panel now. I love easy projects. This one may not be doable, but I wont know until I look.
Sunday, April 18, 2010
Golf
Friday morning, I suggest the boys go golfing. We will drive over to the par three and see how busy it is. There were three cars, but I couldn't see anyone on the course. The must have been on the holes in the back. This course is set up on 5 acres. It's not fancy. Tom wouldn't play anything bigger than his 6 iron if he were here. Its all chips and puts. I told the boys when they start landing on the green we could go to a more impressive course.
I am not playing. It just makes me cranky when I play with the boys. They need too much supervision on the course to enjoy a game with both of them out there. With time I am sure they will get better and we can play. But right now I am there to maintain the peace.
It will be a while before we move on to a bigger course. Trevor agrees to carry his bag. I explain that all Junior golfers must carry their own bags. Riley has our one pull cart for his clubs. He says the picc line would interfere with carrying his clubs. He is right. I would hate to catch the bag on those dangling wires. Trevor gets to the tee on the first hole while Riley is putting his bag on the cart by the car. The whole course you hit off mats with built in tees.
Trevor hits his first shot into the overgrown arborvitae lining the fairway. Riley roles up to try his first shot. Riley hits into the arborvitae. Three more shots later from each boy, they finally feel they have a playable lie. I tell them they must pick up their other shots. They barely give a cursory look. If the ball is out in the open they pick it up, but they are off to hit their "second shot". It is going to be a long morning.
I gather the golf balls they miss. We play with Tom's old ones that have been gathering dust in the garage. Tom likes to play a new sleeve each time he plays as golf balls get bruised and are only good for one round. These are calloways and ProV 1. They run $12 for a sleeve of three. I am not going to let the boys abandon the balls just because their father wont play with them again.
The second hole The boys again need multiple "drives". A cyclone fence lines the right side. We lose a couple over the fence. I don't mind that, since it indicates the ball got up in the air. One shot went through the fence. The trees give a nice bounce out into the middle of the fairway for our playable shots. I can tell the boys haven't been playing for a while. They are enthusiastic and cheerful. Luckily there is no one else playing or we would have problems. Each hole is taking 20 minutes.
I think of my first Golf date with Tom. Teeing off on the first hole, its a really busy day at a public course in Eugene. I whiff the ball a couple times. Tom comes up and wraps his arms around me in a hug and whispers in my ear that I need to speed up. We were on the first Tee.
So, I purposefully pick an obscure course on an off day with no one but my boys playing. Midway through the course Trevor gets his groove. Riley gets mad as a result. Little brother is not allowed to play better than big brother. Why is mommy complimenting Trevor's shot down the middle of the fairway and not Riley's shot? "Sorry, I didn't see the shot, Riley". Not good enough. I am supposed to watch every shot. Riley eventually gets over his pout. I promise to take him out again without Trevor so he can practice. That cheers him up.
The round ends on an up note. After a short nine holes, Trevor is tired. I am impressed he carried his clubs without complaint. Riley is tired also. It was good exercise. My boys can't just walk. Its too sedentary and dull. We have to do things. I am hopeful golf will be a good outlet.
I have also checked into the exercise club for Riley and me. There is a $50 training fee for Riley then its $68 a month for Riley and me. Another $10 if I want Trevor to join, but he also would be a $50 training fee. I am told the none busy times are 1-4 in the afternoon. That is right in the middle of tutoring. There is another club in town I am going to try calling again. They did not return my call the first time. Its a pass card club a friend belongs to. She says its mostly empty.
You come in with a pass card on the door and just use the equipment. There are wipes to clean everything and it is member maintained. I like the idea, I just need them to return my call to find out how expensive it is.
I am not playing. It just makes me cranky when I play with the boys. They need too much supervision on the course to enjoy a game with both of them out there. With time I am sure they will get better and we can play. But right now I am there to maintain the peace.
It will be a while before we move on to a bigger course. Trevor agrees to carry his bag. I explain that all Junior golfers must carry their own bags. Riley has our one pull cart for his clubs. He says the picc line would interfere with carrying his clubs. He is right. I would hate to catch the bag on those dangling wires. Trevor gets to the tee on the first hole while Riley is putting his bag on the cart by the car. The whole course you hit off mats with built in tees.
Trevor hits his first shot into the overgrown arborvitae lining the fairway. Riley roles up to try his first shot. Riley hits into the arborvitae. Three more shots later from each boy, they finally feel they have a playable lie. I tell them they must pick up their other shots. They barely give a cursory look. If the ball is out in the open they pick it up, but they are off to hit their "second shot". It is going to be a long morning.
I gather the golf balls they miss. We play with Tom's old ones that have been gathering dust in the garage. Tom likes to play a new sleeve each time he plays as golf balls get bruised and are only good for one round. These are calloways and ProV 1. They run $12 for a sleeve of three. I am not going to let the boys abandon the balls just because their father wont play with them again.
The second hole The boys again need multiple "drives". A cyclone fence lines the right side. We lose a couple over the fence. I don't mind that, since it indicates the ball got up in the air. One shot went through the fence. The trees give a nice bounce out into the middle of the fairway for our playable shots. I can tell the boys haven't been playing for a while. They are enthusiastic and cheerful. Luckily there is no one else playing or we would have problems. Each hole is taking 20 minutes.
I think of my first Golf date with Tom. Teeing off on the first hole, its a really busy day at a public course in Eugene. I whiff the ball a couple times. Tom comes up and wraps his arms around me in a hug and whispers in my ear that I need to speed up. We were on the first Tee.
So, I purposefully pick an obscure course on an off day with no one but my boys playing. Midway through the course Trevor gets his groove. Riley gets mad as a result. Little brother is not allowed to play better than big brother. Why is mommy complimenting Trevor's shot down the middle of the fairway and not Riley's shot? "Sorry, I didn't see the shot, Riley". Not good enough. I am supposed to watch every shot. Riley eventually gets over his pout. I promise to take him out again without Trevor so he can practice. That cheers him up.
The round ends on an up note. After a short nine holes, Trevor is tired. I am impressed he carried his clubs without complaint. Riley is tired also. It was good exercise. My boys can't just walk. Its too sedentary and dull. We have to do things. I am hopeful golf will be a good outlet.
I have also checked into the exercise club for Riley and me. There is a $50 training fee for Riley then its $68 a month for Riley and me. Another $10 if I want Trevor to join, but he also would be a $50 training fee. I am told the none busy times are 1-4 in the afternoon. That is right in the middle of tutoring. There is another club in town I am going to try calling again. They did not return my call the first time. Its a pass card club a friend belongs to. She says its mostly empty.
You come in with a pass card on the door and just use the equipment. There are wipes to clean everything and it is member maintained. I like the idea, I just need them to return my call to find out how expensive it is.
Thursday, April 15, 2010
Blood
Did I mention how fresh our blood was last week? Expiration was April 24, which is one of the reasons I am so disappointed in today's numbers. That article Tory sent was more pronounced in the failures and relapses. I must remind myself this is week 7 only. Don't rush it, but if we had done the marrow, Riley would be in recovery. I am pulling my hair out trying to know the future.
We, Riley and I, went for a walk yesterday. We stopped under a tree in the neighborhood and read books. It was a lovely day. The sad thing was we didn't walk very far, before we stopped to read. Riley's lack of progress this week has really been a blow to me.
the the Doctor came. He was all smiles he says the Grans being above 1400 are great. He checked the reticulacites under a microscope. These are the new cell production. he is pleased with Riley's progress. two weeks with out needing plateletes was a good sign of progress. I thought we would be transfusion free, but I guess not yet. He is having us go two weeks until our next visit. He says Riley can now go two weeks, just watch for the signs: bleeding, spreading patteccia, anything worry some.
He said we can change the cyclosporine to another drug that does not cause hair growth if the mustache really is bothersome. I tell him its OK I can live with the mustache. We know this stuff is doing its job. I just wanted to know if Riley could shave. Not yet, but soon. Riley likes his mustache. I see my baby growing up.
The new drug is new with fewer study subjects available. I almost laughed when he said cyclosporine has an impressive 5000 study subjects, the new drug has less than a hundred. 5000, wow, so many (sarcasm), when you think that this drug has been used for the last 20 years to treat Aplastic Anemia. It gives you perspective on how rare this disease is. As I mentioned before Dornbechers may see two or three a year from the populations of SW Washington and Oregon combined. We are talking out of a population of 5 or 6 million people.
So, we get to skip a week. I asked about the airplane ride for Riley. The doctor says if Riley's platelets are above 75,000 he can go. Its all about bruising. The landings can be bumpy. As far as flips and loops, the same applies. Platelets need to be above 75,000. I confirm that Riley still has to stay away from crowds, no church or busy malls still. Riley tells how we went to the mall on Sunday and it was busy. The doctor makes a joke about how hard it is to stay away from shopping on the weekend. Its true, it is hard to not go out for months. Shopping is a great anti depressant.
The Doctor also asks how the exercise regime is going. I tell him we made it a few blocks. Friday is no school so I thought we might try that par 3 down the road if it is not busy. A rainy day might work, the doctor suggests. No one else would be out playing. He and Tom talk over the number some. I ask for a clarification as they talk about the 3 cell groups recovering. I want to know if one may lag behind the others and then which one. He says platelets are sometimes the last to recover. Reticulocites in a normal person are around 11. Riley was at 4 which is better than 1, where we were. The doctor watches the Gran as the most important number now as that indicates new cell development.
I called our old doctors back in Longview and asked if Riley had ever had any blood work done. In 2001 I had requested blood work. I think it was after my nephew was diagnosed with Autism. We were concerned about vaccinations. I had wanted to know Riley's immunity. The Longview doctors sent me a copy of that 10 year old CBC
2001 CBC - normal
wbc 9.2 range 5-14.5
rbc 4.48 range 3.80- 5.80
Hgb 12.5 range 10.8- 15.6
Hematocrit 35.6 range % 33-45
platelets 331 range 140-375
Neutrophils 59.7 %
Lymphocytes 31.5%
Neutrophils # 5.49 range 1.50-7.40
Lymphocytes # 2.9 range 1.50-7.00
Neutrophils and Lymphocytes are different kinds of white cells. Reticulocytes which the doctor measured today under a microscope, are immature red cells.
We, Riley and I, went for a walk yesterday. We stopped under a tree in the neighborhood and read books. It was a lovely day. The sad thing was we didn't walk very far, before we stopped to read. Riley's lack of progress this week has really been a blow to me.
the the Doctor came. He was all smiles he says the Grans being above 1400 are great. He checked the reticulacites under a microscope. These are the new cell production. he is pleased with Riley's progress. two weeks with out needing plateletes was a good sign of progress. I thought we would be transfusion free, but I guess not yet. He is having us go two weeks until our next visit. He says Riley can now go two weeks, just watch for the signs: bleeding, spreading patteccia, anything worry some.
He said we can change the cyclosporine to another drug that does not cause hair growth if the mustache really is bothersome. I tell him its OK I can live with the mustache. We know this stuff is doing its job. I just wanted to know if Riley could shave. Not yet, but soon. Riley likes his mustache. I see my baby growing up.
The new drug is new with fewer study subjects available. I almost laughed when he said cyclosporine has an impressive 5000 study subjects, the new drug has less than a hundred. 5000, wow, so many (sarcasm), when you think that this drug has been used for the last 20 years to treat Aplastic Anemia. It gives you perspective on how rare this disease is. As I mentioned before Dornbechers may see two or three a year from the populations of SW Washington and Oregon combined. We are talking out of a population of 5 or 6 million people.
So, we get to skip a week. I asked about the airplane ride for Riley. The doctor says if Riley's platelets are above 75,000 he can go. Its all about bruising. The landings can be bumpy. As far as flips and loops, the same applies. Platelets need to be above 75,000. I confirm that Riley still has to stay away from crowds, no church or busy malls still. Riley tells how we went to the mall on Sunday and it was busy. The doctor makes a joke about how hard it is to stay away from shopping on the weekend. Its true, it is hard to not go out for months. Shopping is a great anti depressant.
The Doctor also asks how the exercise regime is going. I tell him we made it a few blocks. Friday is no school so I thought we might try that par 3 down the road if it is not busy. A rainy day might work, the doctor suggests. No one else would be out playing. He and Tom talk over the number some. I ask for a clarification as they talk about the 3 cell groups recovering. I want to know if one may lag behind the others and then which one. He says platelets are sometimes the last to recover. Reticulocites in a normal person are around 11. Riley was at 4 which is better than 1, where we were. The doctor watches the Gran as the most important number now as that indicates new cell development.
I called our old doctors back in Longview and asked if Riley had ever had any blood work done. In 2001 I had requested blood work. I think it was after my nephew was diagnosed with Autism. We were concerned about vaccinations. I had wanted to know Riley's immunity. The Longview doctors sent me a copy of that 10 year old CBC
2001 CBC - normal
wbc 9.2 range 5-14.5
rbc 4.48 range 3.80- 5.80
Hgb 12.5 range 10.8- 15.6
Hematocrit 35.6 range % 33-45
platelets 331 range 140-375
Neutrophils 59.7 %
Lymphocytes 31.5%
Neutrophils # 5.49 range 1.50-7.40
Lymphocytes # 2.9 range 1.50-7.00
Neutrophils and Lymphocytes are different kinds of white cells. Reticulocytes which the doctor measured today under a microscope, are immature red cells.
thursday 4/15/2010 numbers
wbc 2.1 range 6-17.5
-Gran 1.4 range 1-8.5
rbc 2.54 range 3.10-4.50
hgb 6.9 range 10.5-13.5
platelets 14 range 300-750
So much for optimism. The nurse tells us the shots can show a false positive result. It can take a few days for the real results to show after cutting back on the shots. We are getting platelets and red blood today to make Riley comfortable through the weekend. We all had such hopes. Riley's conservative guesses on where he would be were closest to the truth. Tom showed up after we got the numbers. I can see where the discussion is headed with the doctor when he comes. Our appointment is not until 1:30.
Originally I thought it would be a hi, bye visit. Now with the transfusions I know we will be here all day. Last week the red didn't arrive until 1:30. Red takes two and a half hours to transfuse one unit. They don't tell you these things in the beginning. They let you figure it out for yourself. Probably want to avoid parents and children whining about how long it all takes. I just say that our Thursdays are dedicated to the hospital.
The dressing gets changed on the picc. The nurse is friendly and fun. The nurses are our only company so it is nice to have them friendly. Gigi is on a trip and wont be back until next week. Being tax day makes Tom and me grouchy so we try not to say too much to each other because we'll just snap at each other. Once this week is past we'll be back to normal. it happens every year at this time. Tom says that they will put him in a nursing home before he hires someone to do his taxes for him.
We wait for the doctor now and the blood and platelets. Riley is into a good book and ignores us as much as possible. I took the boys to Barnes and Noble on Sunday. They got to pick out a few new books. The mall was busy so after the treates we left. Riley has had his nose in his new book, except for study times, for days. It was a good choice.
I had just finished reading The Girl with the Dragon Tattoo and The Girl who played with fire. Book three comes out at the end of May. I prepaid and ordered it sent to the house while we were at the store. Wonderful books. I need another good read while I wait, suggestions are welcome.
-Gran 1.4 range 1-8.5
rbc 2.54 range 3.10-4.50
hgb 6.9 range 10.5-13.5
platelets 14 range 300-750
So much for optimism. The nurse tells us the shots can show a false positive result. It can take a few days for the real results to show after cutting back on the shots. We are getting platelets and red blood today to make Riley comfortable through the weekend. We all had such hopes. Riley's conservative guesses on where he would be were closest to the truth. Tom showed up after we got the numbers. I can see where the discussion is headed with the doctor when he comes. Our appointment is not until 1:30.
Originally I thought it would be a hi, bye visit. Now with the transfusions I know we will be here all day. Last week the red didn't arrive until 1:30. Red takes two and a half hours to transfuse one unit. They don't tell you these things in the beginning. They let you figure it out for yourself. Probably want to avoid parents and children whining about how long it all takes. I just say that our Thursdays are dedicated to the hospital.
The dressing gets changed on the picc. The nurse is friendly and fun. The nurses are our only company so it is nice to have them friendly. Gigi is on a trip and wont be back until next week. Being tax day makes Tom and me grouchy so we try not to say too much to each other because we'll just snap at each other. Once this week is past we'll be back to normal. it happens every year at this time. Tom says that they will put him in a nursing home before he hires someone to do his taxes for him.
We wait for the doctor now and the blood and platelets. Riley is into a good book and ignores us as much as possible. I took the boys to Barnes and Noble on Sunday. They got to pick out a few new books. The mall was busy so after the treates we left. Riley has had his nose in his new book, except for study times, for days. It was a good choice.
I had just finished reading The Girl with the Dragon Tattoo and The Girl who played with fire. Book three comes out at the end of May. I prepaid and ordered it sent to the house while we were at the store. Wonderful books. I need another good read while I wait, suggestions are welcome.
Before
I always feel a little strung out Thursday mornings. We never know what the numbers are going to be. I don't look forward to seeing all those other sick children. I do look forward to Riley being in the safety of the hospital for a day. I don't have to worry about what I will do in the event of a bleed, because we are already in good hands.
I still dress up as if I am going to the club for lunch. It makes me feel in control. I make Riley wear something appropriate also. I think of it as a sign of respect, like going to the theater. I also want it to feel like an uplifting event, not something to be dreaded. We will be doing this for a while to come and we might as well make it into something special, since its about the only special thing we do do these days. Riley even likes the change of venue. He also likes the attention when the surgical nurses take the bandages off his picc line and clean and air the skin out. the really nice nurses let the skin sit for a minute exposed before recovering it with new bandages.
This morning I made Riley bath before we go so he would be fresh and clean all over. I trimmed his side burns the other day to make him look less scruffy. His mustache is becoming prominent but we are all afraid to shave it in case he cuts himself. I was going to talk to the doctor about that today. I was thinking they could shave or trim it for us at the hospital. Show Riley how to do it safely. It is not thick just dark and fuzzy and getting longer. His hair on his body is getting longer and darker also. Its one of the side effects of the cyclosporan.
My sister sent a great article on the cases of 67 patients with Aplastic Anemia. It followed their medical history from 1996 to 2008. Whether they relapsed and retreated or did the Bone Marrow or died or are still recovered. We keep going back to the Bone marrow. It is the cure. There is no relapse or re treatment. Tom still thinks we will end up there eventually. Some of these cases took 6 months to a year for recovery and several years later still relapsed. None of the recovered patients were as severe as Riley. We are just leaving the critical acute stage and moving to the severe acute stage.
Once Riley reaches 50% of normal than we will be plain old Acute Aplastic Anemia. I look forward to Mild then Normal. We will see what our numbers are today. Tom made us all guess last night where we thought they would be today. Riley thought they would be lower. Tom bet on the same. I, with my optimism, picked improved numbers across the board. I liked a 5% gain week over week. That should put us in a safe zone by end of May.
Tom is making arrangements with a friend to get Riley up in a biplane. I am to ask the doctor if Riley can handle G forces at all, if they decide to do a loop or trick flying. Memorial weekend is the idea. I have to remember to let the friends know that Aurora Airport is just down the road. Tom says these little planes wont go high enough to effect oxygen levels, but I will ask anyway.
Taxes are due today. I was a little disappointed Tom didn't get them done earlier, but I should have known better. He always waits. It stresses me out and makes me crabby not knowing how much exactly and just getting it over with. But he likes the last minute. It drives me crazy. I pay our bills weeks in advance on autopay so I can be traveling or forget and they just get done. Tom hates that I pay them early, but if I don't then there might be late fees. It feels good to get bills showing we are ahead in payments. Its totally psycological.
The alarm just went off. Time for us to leave for the hospital. The alarm is to remind Riley to take his pills in the morning, but on Thursdays he doesn't take them until after blood draw. So when the alarm goes off on Thursdays its the signal to head out the door.
I still dress up as if I am going to the club for lunch. It makes me feel in control. I make Riley wear something appropriate also. I think of it as a sign of respect, like going to the theater. I also want it to feel like an uplifting event, not something to be dreaded. We will be doing this for a while to come and we might as well make it into something special, since its about the only special thing we do do these days. Riley even likes the change of venue. He also likes the attention when the surgical nurses take the bandages off his picc line and clean and air the skin out. the really nice nurses let the skin sit for a minute exposed before recovering it with new bandages.
This morning I made Riley bath before we go so he would be fresh and clean all over. I trimmed his side burns the other day to make him look less scruffy. His mustache is becoming prominent but we are all afraid to shave it in case he cuts himself. I was going to talk to the doctor about that today. I was thinking they could shave or trim it for us at the hospital. Show Riley how to do it safely. It is not thick just dark and fuzzy and getting longer. His hair on his body is getting longer and darker also. Its one of the side effects of the cyclosporan.
My sister sent a great article on the cases of 67 patients with Aplastic Anemia. It followed their medical history from 1996 to 2008. Whether they relapsed and retreated or did the Bone Marrow or died or are still recovered. We keep going back to the Bone marrow. It is the cure. There is no relapse or re treatment. Tom still thinks we will end up there eventually. Some of these cases took 6 months to a year for recovery and several years later still relapsed. None of the recovered patients were as severe as Riley. We are just leaving the critical acute stage and moving to the severe acute stage.
Once Riley reaches 50% of normal than we will be plain old Acute Aplastic Anemia. I look forward to Mild then Normal. We will see what our numbers are today. Tom made us all guess last night where we thought they would be today. Riley thought they would be lower. Tom bet on the same. I, with my optimism, picked improved numbers across the board. I liked a 5% gain week over week. That should put us in a safe zone by end of May.
Tom is making arrangements with a friend to get Riley up in a biplane. I am to ask the doctor if Riley can handle G forces at all, if they decide to do a loop or trick flying. Memorial weekend is the idea. I have to remember to let the friends know that Aurora Airport is just down the road. Tom says these little planes wont go high enough to effect oxygen levels, but I will ask anyway.
Taxes are due today. I was a little disappointed Tom didn't get them done earlier, but I should have known better. He always waits. It stresses me out and makes me crabby not knowing how much exactly and just getting it over with. But he likes the last minute. It drives me crazy. I pay our bills weeks in advance on autopay so I can be traveling or forget and they just get done. Tom hates that I pay them early, but if I don't then there might be late fees. It feels good to get bills showing we are ahead in payments. Its totally psycological.
The alarm just went off. Time for us to leave for the hospital. The alarm is to remind Riley to take his pills in the morning, but on Thursdays he doesn't take them until after blood draw. So when the alarm goes off on Thursdays its the signal to head out the door.
Sunday, April 11, 2010
Homework
Riley wants to get out of the house as much as I do. I have told him to get his work done and we can go do something, anything. I talked to the teacher about it. Riley did not have all his work complete on Friday. She said that he should be doing an hour for every class she teaches him, three hours a day. I had him doing an hour and a half.
He really only has two days to do work each week, other than tutoring days. Thursdays, we find that we just want to escape it all when we are at the hospital. It is just not conductive to study when you can hear the various TVs going in the alcoves or the sick children passing by with their coat racks of drug IVs just like Riley's. I am almost hopeful that we will start introducing ourselves to other families so we can have a social life. But most of the families are just in the beginning or really sick stages. Not people you want to interrupt and just to have a casual chat. Once your child has progressed to a certain stage we will probably get to go to our regular physicians and wont be coming to the clinic any more.
Meanwhile, unless Riley takes the initiative, I don't push homework while we are at the clinic. I try to encourage it and not disrupt Riley if he chooses to do homework, but I am OK with Riley watching a movie with me or reading a book. I do put my foot down with computer games. He can go to the play area and play the play station they have, if there are other children around. Socializing is good for Riley. I notice he only goes to the play area if there are other children around on the play station. I think he feels much as I do. He likes the camaraderie.
I am trying to get an hour of homework out of Riley every morning after he gets up and takes his pills. We have a nice routine going at home. We need to add a reward to it afterwards, for both of us. Riley asked if sitting around all day is what I always did. I reminded him that I worked in Longview before we moved and loved it. I volunteered at school and worked for the school district as a sub. Now I sit at home and stare at Riley, waiting for him to pop. It is so much better than it was, though, that I am willing to run short errands locally. I even vacuum regularly around the house, because he is home.
The vacuum sits out as a reminder and it does not collect dust on the outside like it used to. It just seems like the more I vacuum the worse those white carpets look. The spots show up even after vacuuming, and I realize how permanent they are. We steamed the carpet in February. You can't tell that we did. Someday we will get the pool table moved and replace the carpet with solid surfacing.
Riley took his shot yesterday, now we wait until Thursday for the results. Hopefully the red will stay high and the platelets will be even better than last week.
He really only has two days to do work each week, other than tutoring days. Thursdays, we find that we just want to escape it all when we are at the hospital. It is just not conductive to study when you can hear the various TVs going in the alcoves or the sick children passing by with their coat racks of drug IVs just like Riley's. I am almost hopeful that we will start introducing ourselves to other families so we can have a social life. But most of the families are just in the beginning or really sick stages. Not people you want to interrupt and just to have a casual chat. Once your child has progressed to a certain stage we will probably get to go to our regular physicians and wont be coming to the clinic any more.
Meanwhile, unless Riley takes the initiative, I don't push homework while we are at the clinic. I try to encourage it and not disrupt Riley if he chooses to do homework, but I am OK with Riley watching a movie with me or reading a book. I do put my foot down with computer games. He can go to the play area and play the play station they have, if there are other children around. Socializing is good for Riley. I notice he only goes to the play area if there are other children around on the play station. I think he feels much as I do. He likes the camaraderie.
I am trying to get an hour of homework out of Riley every morning after he gets up and takes his pills. We have a nice routine going at home. We need to add a reward to it afterwards, for both of us. Riley asked if sitting around all day is what I always did. I reminded him that I worked in Longview before we moved and loved it. I volunteered at school and worked for the school district as a sub. Now I sit at home and stare at Riley, waiting for him to pop. It is so much better than it was, though, that I am willing to run short errands locally. I even vacuum regularly around the house, because he is home.
The vacuum sits out as a reminder and it does not collect dust on the outside like it used to. It just seems like the more I vacuum the worse those white carpets look. The spots show up even after vacuuming, and I realize how permanent they are. We steamed the carpet in February. You can't tell that we did. Someday we will get the pool table moved and replace the carpet with solid surfacing.
Riley took his shot yesterday, now we wait until Thursday for the results. Hopefully the red will stay high and the platelets will be even better than last week.
Thursday, April 8, 2010
Yeah
It may not look good for a normal person but the Doctor said Riley is a Poster case of ATG treatment. He is pleased with the results. Riley had few and only mild reactions to the treatment and shows great progress for six weeks out. The doctor listed some of the things that could have happened; needing insulin for high glucose levels, or high blood pressure, seizures, or high fevers.
Riley had none of the more serious reactions.
Platelets are joining white cells. They are holding and turning up . Tom, sitting in the corner of the examination room, said in that case he wont say anything more on that other subject. He was going to bring up the marrow again, but passed since according to the doctor Riley's progress is great.
WBC 4.0 reference range 6-17.5
Gran 2.9 range 1-8.5
RBC 2.58 range 3.1-4.5
HGB 6.7 range 10.5-13.5
Plt 26 range 300-750
Platelets finally showed progress all on their own. They did not crash back down to below 8 this week, but held at a lovely level of 26. The whites held to the point that last week we went to every other day on shots. This week we are only to take the blood booster Filgrastim on Saturday. Then wait for our blood tests on Thursday next week
The doctor even thinks this may be the last red cell transfusion Riley may need. He is getting one unit today. He had a mild headache starting last night. He couldn't take a long walk with me without stopping to rest. His Reds were at 6.7, so it was not surprising to the doctor .
I asked about the white blood booster. Its a protein that attaches itself only to the white cells. It accelerates their growth. EPO does not work. It has been tried in trials with Aplastic Anemia. For what ever reason it was unsuccessful. The doctor listed other blood booster I had read about, but said they had been tried unsuccessfully. He said the pharmaceutical companies would love for their drugs to work in other areas and had run trials, but the results were that the other blood boosters just don't do anything for Riley's condition. He ran down a list of unsuccessful drug trials. This treatment works.
I asked about adding exercises to Riley's life. Golf in particular. He said OK but hesitantly. He didn't want Riley hit with a ball, and definitely no contact sports. Walking or a treadmill was his preference. we have got to get out of the house though. I am going stir crazy. The tutor said she was uncomfortable if I left for time during their sessions. It is one of the safety rules that I have to be present throughout her visits. So, I am house bound every tutoring afternoon. The house is set up with that open floor plan, that it is hard for me to do anything productive without distracting Riley from his studies. I hide in the office on the computer most days, staring st my messes of papers on the floor.
We asked about Riley's resistance level. He said these levels protect from bacteria but not necessarily from molds and spores and definitely not from viruses, so still avoid people and busy places.
The doctor asked how studies were going. Tom and I both snickered. I pointed out that Riley had brought work with him, but he had a war game up on his computer screen at the moment. Studies must be done, says the doctor. I love the reinforcement.
Riley had none of the more serious reactions.
Platelets are joining white cells. They are holding and turning up . Tom, sitting in the corner of the examination room, said in that case he wont say anything more on that other subject. He was going to bring up the marrow again, but passed since according to the doctor Riley's progress is great.
WBC 4.0 reference range 6-17.5
Gran 2.9 range 1-8.5
RBC 2.58 range 3.1-4.5
HGB 6.7 range 10.5-13.5
Plt 26 range 300-750
Platelets finally showed progress all on their own. They did not crash back down to below 8 this week, but held at a lovely level of 26. The whites held to the point that last week we went to every other day on shots. This week we are only to take the blood booster Filgrastim on Saturday. Then wait for our blood tests on Thursday next week
The doctor even thinks this may be the last red cell transfusion Riley may need. He is getting one unit today. He had a mild headache starting last night. He couldn't take a long walk with me without stopping to rest. His Reds were at 6.7, so it was not surprising to the doctor .
I asked about the white blood booster. Its a protein that attaches itself only to the white cells. It accelerates their growth. EPO does not work. It has been tried in trials with Aplastic Anemia. For what ever reason it was unsuccessful. The doctor listed other blood booster I had read about, but said they had been tried unsuccessfully. He said the pharmaceutical companies would love for their drugs to work in other areas and had run trials, but the results were that the other blood boosters just don't do anything for Riley's condition. He ran down a list of unsuccessful drug trials. This treatment works.
I asked about adding exercises to Riley's life. Golf in particular. He said OK but hesitantly. He didn't want Riley hit with a ball, and definitely no contact sports. Walking or a treadmill was his preference. we have got to get out of the house though. I am going stir crazy. The tutor said she was uncomfortable if I left for time during their sessions. It is one of the safety rules that I have to be present throughout her visits. So, I am house bound every tutoring afternoon. The house is set up with that open floor plan, that it is hard for me to do anything productive without distracting Riley from his studies. I hide in the office on the computer most days, staring st my messes of papers on the floor.
We asked about Riley's resistance level. He said these levels protect from bacteria but not necessarily from molds and spores and definitely not from viruses, so still avoid people and busy places.
The doctor asked how studies were going. Tom and I both snickered. I pointed out that Riley had brought work with him, but he had a war game up on his computer screen at the moment. Studies must be done, says the doctor. I love the reinforcement.
Wednesday, April 7, 2010
Questions for the doctor tomorrow
Why are only the white cells positively effected by the blood booster shot and not the others.
How can the blood booster shot work at all when the marrow isn't supposed to be producing that much and again why only whites?
Tell me about Epoeitin, the drug that targets red cell production. Why isn't it used for Aplastic Anemia?
Riley and I went for a walk today. I couldn't tell if he was board or really just winded. We didn't get very far before he asked to sit down on the sidewalk for a rest. I couldn't get a straight answer from him. Could it be all this home bound activity is causing him to lose fitness or is he losing energy for other reasons? I think I will try the athletic club down the road after tomorrow. If we go during off hours and wipe down the equipment, maybe he can get some real exercise. He likes the excercycles and the tread mills. The novelty might keep him occupied for a while. I will see what the doctor says tomorrow.
Last night I went out to PTA. We probably spent 15 minutes on PTA and the rest was just chatting. It was so nice to be out. One of my friends dropped off her son to play x box while I was gone. The boys loved it. Being a school night made it extra special. My friend asked how it was leaving Riley. I said as long as I am close by for a phone call and quick return I was comfortable with leaving him for short times. My neighbor is also a home mom so I check to see if her car is around when I leave. knowing she is home makes me more comfortable while I am out. Riley knows he can go to her in an emergency, bloody nose or what ever. she knows my number and how to respond properly to an emergency.
We still have the EPI pin but have never had to use it. I showed it to Trevor and where we keep it. He is my back up when he is home. Trevor and I went to the library yesterday after school. he checked out a book and put holds on a few he was looking for.
The cat last week came down with a rash on his belly. I didn't notice until Wednesday and Thursday was hospital day. We were busy Friday and then had company for the weekend.
I put a cone around the cat's neck, the kind that keep them from licking. He could get to some areas but not all. I then put bag balm on his sores to make him comfortable until I could get him to the doctor. Finally, I got him in.
Fleas, the cat is allergic to fleas. He is on Advantage, but one bite, one flea sends him over the edge. He was tearing out his fur to get to the fleas. he didn't even have very many. The vet found one. He said allergic animals usually don't have many because they get rid of them quickly. He treated the cat for tape worms because eating the fleas gives cats tape worms. He sent home a tape worm pill for our other cat and Revolution flea treatment for both cats.
So, now the animal's bugs are resistant to treatment. I have to say if Riley is living in a house full of these issues and germs, his body must be pretty resilient in some ways.
While at the vets I had to apologize for taking a week to get the cat in to see him. I had also rescheduled twice while trying to bring in the cat. We also talked about Riley. The vet said he was a donor. he even pulled out his card to show me. He said it was old and he didn't even know if it was still good anymore. I told him he could check. I said we supposedly have three good donors to choose from on the list. They don't know it yet, but end of May someone may get a call unless Riley's numbers start turning soon.
The charts, other than the whites and and ANC are still the same old same old. Crash then transfusion to livable numbers then crash again. ANC is the Grans, which is a percentage number of new neutrophiles or new cells. A normal person is constantly replacing old and dieing cells. Since Riley's body stopped doing that for a while, he is way behind. Like putting drops of water into an empty cup that needs filling.
We are keeping it full artificially, with the transfusions. But say that cup is in the hot sun and the water is evaporating and we only have a small stopper to use to refill it, that is how I imagine Riley's body is working. Its an uphill battle to stay ahead of the dieing cells when he is only spitting out a few new cells at a time rather than the torrent that is needed. Once his body kicks into gear, life will be good again.
I am bummed that the doctor put us off a month, but if you do the math March, April, May, three months, he's right. Riley didn't get out of the hospital until February 27. It just pushes right up to our trip. We may just have to do a transfusion before we go and just do it.
We can deal with what ever decisions we are going to make, after we get back. Kind of like what we told the Make a Wish Foundation. We put them off making a decision until after May also. Maybe by the time we get around to that trip everyone will be well and healthy.
If we didn't have these challenges we wouldn't appreciate the good days when they come.
I'll let you know what the numbers are tomorrow. I will be curious if Riley needs red cells to counter his tiredness. Is it due to low red and lack of oxygen or is it just he is getting way out of shape from lack of exercise?
Why are only the white cells positively effected by the blood booster shot and not the others.
How can the blood booster shot work at all when the marrow isn't supposed to be producing that much and again why only whites?
Tell me about Epoeitin, the drug that targets red cell production. Why isn't it used for Aplastic Anemia?
Riley and I went for a walk today. I couldn't tell if he was board or really just winded. We didn't get very far before he asked to sit down on the sidewalk for a rest. I couldn't get a straight answer from him. Could it be all this home bound activity is causing him to lose fitness or is he losing energy for other reasons? I think I will try the athletic club down the road after tomorrow. If we go during off hours and wipe down the equipment, maybe he can get some real exercise. He likes the excercycles and the tread mills. The novelty might keep him occupied for a while. I will see what the doctor says tomorrow.
Last night I went out to PTA. We probably spent 15 minutes on PTA and the rest was just chatting. It was so nice to be out. One of my friends dropped off her son to play x box while I was gone. The boys loved it. Being a school night made it extra special. My friend asked how it was leaving Riley. I said as long as I am close by for a phone call and quick return I was comfortable with leaving him for short times. My neighbor is also a home mom so I check to see if her car is around when I leave. knowing she is home makes me more comfortable while I am out. Riley knows he can go to her in an emergency, bloody nose or what ever. she knows my number and how to respond properly to an emergency.
We still have the EPI pin but have never had to use it. I showed it to Trevor and where we keep it. He is my back up when he is home. Trevor and I went to the library yesterday after school. he checked out a book and put holds on a few he was looking for.
The cat last week came down with a rash on his belly. I didn't notice until Wednesday and Thursday was hospital day. We were busy Friday and then had company for the weekend.
I put a cone around the cat's neck, the kind that keep them from licking. He could get to some areas but not all. I then put bag balm on his sores to make him comfortable until I could get him to the doctor. Finally, I got him in.
Fleas, the cat is allergic to fleas. He is on Advantage, but one bite, one flea sends him over the edge. He was tearing out his fur to get to the fleas. he didn't even have very many. The vet found one. He said allergic animals usually don't have many because they get rid of them quickly. He treated the cat for tape worms because eating the fleas gives cats tape worms. He sent home a tape worm pill for our other cat and Revolution flea treatment for both cats.
So, now the animal's bugs are resistant to treatment. I have to say if Riley is living in a house full of these issues and germs, his body must be pretty resilient in some ways.
While at the vets I had to apologize for taking a week to get the cat in to see him. I had also rescheduled twice while trying to bring in the cat. We also talked about Riley. The vet said he was a donor. he even pulled out his card to show me. He said it was old and he didn't even know if it was still good anymore. I told him he could check. I said we supposedly have three good donors to choose from on the list. They don't know it yet, but end of May someone may get a call unless Riley's numbers start turning soon.
The charts, other than the whites and and ANC are still the same old same old. Crash then transfusion to livable numbers then crash again. ANC is the Grans, which is a percentage number of new neutrophiles or new cells. A normal person is constantly replacing old and dieing cells. Since Riley's body stopped doing that for a while, he is way behind. Like putting drops of water into an empty cup that needs filling.
We are keeping it full artificially, with the transfusions. But say that cup is in the hot sun and the water is evaporating and we only have a small stopper to use to refill it, that is how I imagine Riley's body is working. Its an uphill battle to stay ahead of the dieing cells when he is only spitting out a few new cells at a time rather than the torrent that is needed. Once his body kicks into gear, life will be good again.
I am bummed that the doctor put us off a month, but if you do the math March, April, May, three months, he's right. Riley didn't get out of the hospital until February 27. It just pushes right up to our trip. We may just have to do a transfusion before we go and just do it.
We can deal with what ever decisions we are going to make, after we get back. Kind of like what we told the Make a Wish Foundation. We put them off making a decision until after May also. Maybe by the time we get around to that trip everyone will be well and healthy.
If we didn't have these challenges we wouldn't appreciate the good days when they come.
I'll let you know what the numbers are tomorrow. I will be curious if Riley needs red cells to counter his tiredness. Is it due to low red and lack of oxygen or is it just he is getting way out of shape from lack of exercise?
Tuesday, April 6, 2010
Donating Blood
I went down to the high school to donate on Monday. They had over 200 students signed up and no room for me. I will have to catch another opportunity. I was told the Methodist Church is having a donation drive at the end of the month around the 26th. There is also going to be one at Baker Prairie on May 4th to help Riley.
I am hopeful that perhaps Riley will get some young healthy football player's blood and really perk up. Mom tells me the Muslim community in Portland just did a blood drive. I told her if that's the case, Riley will probably want Indian (middle Eastern) food after this week. She laughed.
We talk about what happens to all that blood. It does age. I hate the thought of it just getting tossed. Mom mentions that it may get sent to rural areas, like eastern Oregon where they don't have as many donors. I say it gets sent to places like Haiti or Chile where there are many people at once in need and in crisis. There have been enough crisis for the Red cross recently that I figure none of it will go to waste. It truly is an inexpensive way to donate.
The question was raised over the difference in platelet donating to blood donating. It takes a little longer, two hours or so. They hook you up to a machine and give you two lines. One line siphons the blood out and the other puts it back into you. The machine filters out the platelets then gives you back your own blood. They look for people with high platelet counts to donate. You have to go to special locations. The normal blood drives don't have the machine with them. They test your whole blood to see if you are a candidate with high platelet counts.
Few people realize that it is a different process. The nurses at the hospital encouraged us to look into platelet donating as they sometimes run short. Since you get your blood back and platelets are replaced within a 10 day span, you can donate platelets every two weeks, much more often then red cell donating. Whole blood can be donated only every two months or longer, as it is stressful on your body.
In Riley, as the red cells, from the transfusions, die they leave iron behind in his system. This iron builds up to toxic levels in his liver over time. Its another reason why we want fewer red blood transfusions. You hear of iron overdoses from vitamins. Riley can overdose on iron from blood transfusions. Its one of the reasons he doesn't do vitamins anymore. He calls himself Iron man.
The cylcosporin does use up magnesium so Riley is now taking prescriptive magnesium twice a day.
I wish Obama would give credit for hours of volunteering. If you want to get the people out to volunteer make the hours a tax write off, say minimum wage value or half that. Just another thought as we approach tax time.
I am hopeful that perhaps Riley will get some young healthy football player's blood and really perk up. Mom tells me the Muslim community in Portland just did a blood drive. I told her if that's the case, Riley will probably want Indian (middle Eastern) food after this week. She laughed.
We talk about what happens to all that blood. It does age. I hate the thought of it just getting tossed. Mom mentions that it may get sent to rural areas, like eastern Oregon where they don't have as many donors. I say it gets sent to places like Haiti or Chile where there are many people at once in need and in crisis. There have been enough crisis for the Red cross recently that I figure none of it will go to waste. It truly is an inexpensive way to donate.
The question was raised over the difference in platelet donating to blood donating. It takes a little longer, two hours or so. They hook you up to a machine and give you two lines. One line siphons the blood out and the other puts it back into you. The machine filters out the platelets then gives you back your own blood. They look for people with high platelet counts to donate. You have to go to special locations. The normal blood drives don't have the machine with them. They test your whole blood to see if you are a candidate with high platelet counts.
Few people realize that it is a different process. The nurses at the hospital encouraged us to look into platelet donating as they sometimes run short. Since you get your blood back and platelets are replaced within a 10 day span, you can donate platelets every two weeks, much more often then red cell donating. Whole blood can be donated only every two months or longer, as it is stressful on your body.
In Riley, as the red cells, from the transfusions, die they leave iron behind in his system. This iron builds up to toxic levels in his liver over time. Its another reason why we want fewer red blood transfusions. You hear of iron overdoses from vitamins. Riley can overdose on iron from blood transfusions. Its one of the reasons he doesn't do vitamins anymore. He calls himself Iron man.
The cylcosporin does use up magnesium so Riley is now taking prescriptive magnesium twice a day.
I wish Obama would give credit for hours of volunteering. If you want to get the people out to volunteer make the hours a tax write off, say minimum wage value or half that. Just another thought as we approach tax time.
Pampering
Easter weekend was a pampering weekend for mommy. After the Make a Wish people left, we had cocktails, which lead to our not going out later. The next day though, I made a big bacon and eggs breakfast for everyone and then my girlfriend visiting from Seattle and I left. We went to have a pedicure but stopped to buy a Latte first. Parsons was celebrating the new opening of their espresso cafe and Easter weekend. The Bunny was in the store. The coffee turned out to be free due to the party and they were having a 50% to 75% off sale. I went crazy. I bought bright summer bags and Jen bought gifts for her family. Our quick stop for coffee turned into a two hour shopping spree. Finally we finished and left the store quite content over our great deals. I was gleeful over a bag I never would have bought if it hadn't been price slashed over and over again.
We went to 2000 nails and had a wonderful pedicure with paraffin wax and leg massage. Afterwards we went to Pudding River Cafe for lunch and bought some home made candies for Easter gifts for the children. Tom finally called wondering what had happened to us. I told Jen the day reminded me of those weekends we would spend on Whidbey island, when we lived in Seattle. Canby has some wonderful unique places to shop. I was able to show off in high style its character on Saturday.
I know there are even more cute places to explore. I read about them in the local advertising magazine. Hitting that incredible sale though, made me feel ecstatic. The day was perfect. And it didn't break the bank.
Sunday, since the boys are too old anymore to do egg hunts, I encouraged them to stuff eggs for the neighbors. The neighbor boys are 2 and 6 and that perfect age. I had called to warn their mother the night before so she wouldn't be freaked out about strangers.
To avoid the candy overload, my boys stuffed the eggs mostly with small change; pennies, nickles, and dimes. They make a lovely rattling sound in the plastic eggs. Of course my boys couldn't just stick to the money. They scrounged the house for other candy and balloons. Riley and Trevor had the eggs hidden in their yard by the time they got back from Sunday Church. You should have heard the squeals of glee from the youngest child. I love that age. The world is still a beautiful place. Trevor and I went out to watch the hunt, but it was cold so we didn't stay out for long. It made my Sunday lovely. We didn't do anything else. I had corned beef and cabbage for dinner in the crock pot with biscuits, so it was easy. Trevor had wanted to go out for dinner, but Tom had gotten on the computer and couldn't leave. I was fine with a cozy night at home.
Riley is beginning to get lazy. He puts off his homework and I catch him all the time playing games on his computer instead of research.
We went to 2000 nails and had a wonderful pedicure with paraffin wax and leg massage. Afterwards we went to Pudding River Cafe for lunch and bought some home made candies for Easter gifts for the children. Tom finally called wondering what had happened to us. I told Jen the day reminded me of those weekends we would spend on Whidbey island, when we lived in Seattle. Canby has some wonderful unique places to shop. I was able to show off in high style its character on Saturday.
I know there are even more cute places to explore. I read about them in the local advertising magazine. Hitting that incredible sale though, made me feel ecstatic. The day was perfect. And it didn't break the bank.
Sunday, since the boys are too old anymore to do egg hunts, I encouraged them to stuff eggs for the neighbors. The neighbor boys are 2 and 6 and that perfect age. I had called to warn their mother the night before so she wouldn't be freaked out about strangers.
To avoid the candy overload, my boys stuffed the eggs mostly with small change; pennies, nickles, and dimes. They make a lovely rattling sound in the plastic eggs. Of course my boys couldn't just stick to the money. They scrounged the house for other candy and balloons. Riley and Trevor had the eggs hidden in their yard by the time they got back from Sunday Church. You should have heard the squeals of glee from the youngest child. I love that age. The world is still a beautiful place. Trevor and I went out to watch the hunt, but it was cold so we didn't stay out for long. It made my Sunday lovely. We didn't do anything else. I had corned beef and cabbage for dinner in the crock pot with biscuits, so it was easy. Trevor had wanted to go out for dinner, but Tom had gotten on the computer and couldn't leave. I was fine with a cozy night at home.
Riley is beginning to get lazy. He puts off his homework and I catch him all the time playing games on his computer instead of research.
Saturday, April 3, 2010
Wishes
As the conversation went on Riley's wishes, we ended up exploring Nascar as an option. The pilot an airplane I thought would be first up, but Riley didn't want to do anything by himself. He wanted the whole family with him. Tom said he would go. The Women offered to look into a class Riley could take to pilot a plane, leading up to the flight. They will be looking into it. Tom said he could arrange privately with friends for Riley to pilot a plane. Tom knew several people with pilot licences who could assist with this wish.
Tom pointed out that the rocket program had ground to a halt at the moment. The shuttles had been canceled. So it is harder to find a rocket launch any time in the near future. Riley had also mentioned getting a new computer, but that was so he could give his old computer, which he just got last fall, to his brother so he wouldn't have to share anymore. Riley decided to drop that wish himself for something more interesting.
Make a wish wants a reason for wishes to make sure they are not the parents wish rather than the child. They ask questions and feel out the family to find the most suitable wish. Riley said a resort vacation would be lovely, but he couldn't say where. The women offered to wait on the wish until after the picc comes out so Riley could have a trip that involved a pool or water slide or swimming. It is a consideration to wait until next year. By that time we may be celebrating his good health. Or do we do it now while we can? They say it takes six months to grant a wish.
That left us with Nascar. I had concerns that this was Tom's wish not Riley's. But Riley said he thought going down to the pits and watching the tire changes during a race would be so cool. Tom didn't even care if the driver wasn't Jeff Gordon. Riley suggested Junior, but we all came up with names of drivers that would be fun to meet. I might even like meeting Tony Stewart or Kyle Edwards. They just built new homes, with Edwards wife decorating and designing Stewart's home for him. It took two years to build.
So the wishes are still up in the air. We gave the foundation some ideas to work with and see if they could accommodate any of them. Riley had the cruise first choice, but being on a boat if he gets sick would not be a good thing. So I am disinclined to do it unless Riley is really cured. The Doctor has to approve the trip chosen also for safety and to confirm that Riley has a life threatening illness and qualifies for Make a Wish. Tom and I feel guilty after meeting destitute families also with sick children, that Riley even qualifies. Make a wish does not consider family financial factors in granting wishes.
They have their price limit on the wish and no international travel due to medical uncertainties. I do think it pushes the family closer together. Especially when one of Riley's criteria is that the whole family gets to participate or he doesn't want to do it. Tom has never taken the boys to a Nascar race. We have been to PIR. PIR is a road race track. Riley said he wants a smaller round track with more wrecks during racing as a result. He is definitely all boy in that regard. He would probably be content with a smash up derby. Its all about the experience with Riley.
We did Disney World when the boys were 5 and 7. Riley said he had done that, he wanted something different now. I suggested Sea World, but that was more a Trevor thing, with water and fish. Riley said a resort near a zoo or sea world would be OK, but he didn't have strong feelings about it.
I told the women to check in with us at the end of May. That is when we assess Riley's condition again and make some hard decisions potentially. Since we can put the wish off as needed I am content to wait. Homestead is the last Nascar race of the year. There is plenty of time. I feel better knowing that we will be on dry ground accessible to American hospitals and ERs.
Tom pointed out that the rocket program had ground to a halt at the moment. The shuttles had been canceled. So it is harder to find a rocket launch any time in the near future. Riley had also mentioned getting a new computer, but that was so he could give his old computer, which he just got last fall, to his brother so he wouldn't have to share anymore. Riley decided to drop that wish himself for something more interesting.
Make a wish wants a reason for wishes to make sure they are not the parents wish rather than the child. They ask questions and feel out the family to find the most suitable wish. Riley said a resort vacation would be lovely, but he couldn't say where. The women offered to wait on the wish until after the picc comes out so Riley could have a trip that involved a pool or water slide or swimming. It is a consideration to wait until next year. By that time we may be celebrating his good health. Or do we do it now while we can? They say it takes six months to grant a wish.
That left us with Nascar. I had concerns that this was Tom's wish not Riley's. But Riley said he thought going down to the pits and watching the tire changes during a race would be so cool. Tom didn't even care if the driver wasn't Jeff Gordon. Riley suggested Junior, but we all came up with names of drivers that would be fun to meet. I might even like meeting Tony Stewart or Kyle Edwards. They just built new homes, with Edwards wife decorating and designing Stewart's home for him. It took two years to build.
So the wishes are still up in the air. We gave the foundation some ideas to work with and see if they could accommodate any of them. Riley had the cruise first choice, but being on a boat if he gets sick would not be a good thing. So I am disinclined to do it unless Riley is really cured. The Doctor has to approve the trip chosen also for safety and to confirm that Riley has a life threatening illness and qualifies for Make a Wish. Tom and I feel guilty after meeting destitute families also with sick children, that Riley even qualifies. Make a wish does not consider family financial factors in granting wishes.
They have their price limit on the wish and no international travel due to medical uncertainties. I do think it pushes the family closer together. Especially when one of Riley's criteria is that the whole family gets to participate or he doesn't want to do it. Tom has never taken the boys to a Nascar race. We have been to PIR. PIR is a road race track. Riley said he wants a smaller round track with more wrecks during racing as a result. He is definitely all boy in that regard. He would probably be content with a smash up derby. Its all about the experience with Riley.
We did Disney World when the boys were 5 and 7. Riley said he had done that, he wanted something different now. I suggested Sea World, but that was more a Trevor thing, with water and fish. Riley said a resort near a zoo or sea world would be OK, but he didn't have strong feelings about it.
I told the women to check in with us at the end of May. That is when we assess Riley's condition again and make some hard decisions potentially. Since we can put the wish off as needed I am content to wait. Homestead is the last Nascar race of the year. There is plenty of time. I feel better knowing that we will be on dry ground accessible to American hospitals and ERs.
Make a Wish
Make a Wish foundation sent out two girls to meet us. I say girls because they were probably just out of college, young things. They were adorable. They brought a gift for Riley and Trevor, two more models to make. The one for Riley was the Write Brothers' plane. Its going to be cool. The other was a fighter plane for Trevor. I have bought hooks to string a wire in Riley's room so he can hang them without too many holes in my ceiling and walls. I got the idea from elementary school classrooms when they hang art.
Riley's list started with a cruise with a balcony room or a Nascar race going to the pits or flying a plane himself or watching a rocket launch or just going to a resort. He tells the women the cruise he wants because the whole family could use the break and he wants a water slide and an arcade and to ski behind the boat like on myth busters, on the cruise. I pointed out with his picc he can't really do water activities. Tom is standing in the kitchen with his hand over his mouth preventing himself from commenting on the Nascar. He does contribute that any of the top 15 drives would be great to meet. The women know nothing about Nascar. They ask how often they race. I tell them out of 52 weeks in the year they race all but two months. They ask if there is a particular race track Riley likes after I explain that they race all over the country also, Charlotte, or California, Phoenix or Vegas. Tom suggests Homestead, its the last race of the year.
They ask if there is anything at this time that might interfere with dates medical appointments or school. I say no. I would pull Trevor from school for this I think. He didn't get to go to the Olympics recently because of bad grades, but with his brother sick, well, that's different. I do tell them not to make any decisions until end of May since if we choose bone Marrow all the time lines would change.
For Bone marrow we would take two months from start to finish then another 100 day wait to see if Riley rejects. I don't know if we would want to do this trip before or wait for after. Positive thoughts. The doctor is positive, but the liver surgeon for my dad was positive too, when my dad was obviously going to die of liver failure. Tom says you have to read the hints, read between the lines. That is why Tom is so depressed even though we haven't gotten there yet. he thinks we will get to bone marrow. Bone marrow is the cure, no chance of relapse and good blood forever more. That is not a bad thing to end up with, if you survive the process.
We had cocktails last night. I did not make it to my creative memories class. I did find that missing picture. I will scan it into my computer and print a copy for me. I can now finish the project I have been working on. Then I will start a book on Riley and Trevor. I need to start taking more pictures with the camera my girlfriend gave me.
Riley's list started with a cruise with a balcony room or a Nascar race going to the pits or flying a plane himself or watching a rocket launch or just going to a resort. He tells the women the cruise he wants because the whole family could use the break and he wants a water slide and an arcade and to ski behind the boat like on myth busters, on the cruise. I pointed out with his picc he can't really do water activities. Tom is standing in the kitchen with his hand over his mouth preventing himself from commenting on the Nascar. He does contribute that any of the top 15 drives would be great to meet. The women know nothing about Nascar. They ask how often they race. I tell them out of 52 weeks in the year they race all but two months. They ask if there is a particular race track Riley likes after I explain that they race all over the country also, Charlotte, or California, Phoenix or Vegas. Tom suggests Homestead, its the last race of the year.
They ask if there is anything at this time that might interfere with dates medical appointments or school. I say no. I would pull Trevor from school for this I think. He didn't get to go to the Olympics recently because of bad grades, but with his brother sick, well, that's different. I do tell them not to make any decisions until end of May since if we choose bone Marrow all the time lines would change.
For Bone marrow we would take two months from start to finish then another 100 day wait to see if Riley rejects. I don't know if we would want to do this trip before or wait for after. Positive thoughts. The doctor is positive, but the liver surgeon for my dad was positive too, when my dad was obviously going to die of liver failure. Tom says you have to read the hints, read between the lines. That is why Tom is so depressed even though we haven't gotten there yet. he thinks we will get to bone marrow. Bone marrow is the cure, no chance of relapse and good blood forever more. That is not a bad thing to end up with, if you survive the process.
We had cocktails last night. I did not make it to my creative memories class. I did find that missing picture. I will scan it into my computer and print a copy for me. I can now finish the project I have been working on. Then I will start a book on Riley and Trevor. I need to start taking more pictures with the camera my girlfriend gave me.
Thursday, April 1, 2010
Thursday April 1
Numbers
wbc 4.7 range 6-17
mid 0.5 range .1- 1.1
Gran 3.4 range 1-8.5
rbc 3.09 range 3.1- 4.5
hgb 7.8 range 10.5 -13.5
plt 6 range 300-750
Last Thursday Riley received one unit of red and one platelet. He needs platelets again. Red is marginal. We could push it until next week or get another unit. Every unit gets us closer to that horrible moment when Riley's body starts rejecting transfusions. These are not bad numbers for Riley. I just remember how freaked out the ER was to see these kind of numbers and they are in the business of seeing bad numbers.
The reference range keeps changing on us. I think it is to keep us from being freaked out ourselves. Riley has been invited to a special summer camp. It is put on by the American cancer society. Nurses and a doctor from Doernbecher attend and are on hand with meds. He can take his brother with him. The problem is its the week before we are to leave for NY. That is a lot to do.
The doctor is still encouraging. He said at worst Riley could take a transfusion right before we leave on our trip so his body is stoked up. Hopefully though, that will not be necessary.
We are really encouraged about the wbc. The doctor adjusted the blood booster shot to every other day. I only wish the platelets and reds would hold consistently also. It is just amazing how researchers have been able to target that exact cell growth so successfully. If they could do it for the other two segments as well life would be smooth sailing. The Gran going up is encouraging. It represents the percentage of new cell production.
The doctor worked on getting Riley involved in our conversation. He wants to make sure Riley is proactive with his treatment. Riley needs to be responsible for his meds and his own future.
Riley sits curled up in the recliner in our cubicle while the doctor visits. His knees are up to his chest. He listens and responds, but you can tell he would rather not listen too closely. He doesn't want to hear anything negative. Its all good, so he uncurls. The doctor has him move to the examination bed so he can check his stomach. He looks for enlarged organs, but all is well. Riley giggles as the doctor presses on his abdomen area. Riley is very ticklish.
Jen is visiting. She asks, with Riley's improving white blood cells, can people who might be sick or getting over being sick, be around Riley. The answer is no. Riley may be improving, but his numbers are no where near normal, and we must remember that. Before the platelets, Riley received an antibiotic drip that will protect him for a month from pneumonia . Next month if his numbers are still better, they will switch to another kind of antibiotic. This stuff is pretty potent and hard on the organs.
Tom had a list of questions for me to ask. He had to work. The doctor missed him at our visit. I think he appreciated the knowledgeable conversation and questions that Tom would put to him. The first question was would another bone marrow aspiration (biopsy) show anything definitively. Not for a year was the answer. I think Tom would have Riley poked every month so he could chart it just like running a trial on his machines at work.
I also ask for a clarification. The numbers in May, will they stay there or continue to go up? Tom thought they might settle. The doctor tells me the numbers will continue to go up even after May. May was the time to discuss whether we do this treatment again, hold off and wait some more, or go looking for that donor and begin the marrow transplant process. Riley is disinclined to do marrow. Patience is my mantra. The problem is those red cell transfusions, he can only take so many. He has to get beyond red transfusions or else. The doctor also says to tell Tom to put off that discussion until the end of May, not the beginning as originally discussed. There is no rushing the numbers.
The Doctor had said 1 to 3 months minimum to see signs of improvement. That was just to see signs not the improvement finale. It all comes back to how many and how often Riley gets red transfusions. He had two units of red the last weekend in February, in one transfusion, before we were discharged from the hospital. He has had two other transfusions since then, single units each, both last week; the ER and at clinic on last Thursday. I would say once a month, but Riley's numbers at 7.8 rbc indicate that he may need another transfusion next week. I would have hoped it would last longer. Red blood cells are supposed to last 100 days in a normal person. Figure a half life on the transfusion, since the blood received is already aged a little. So, 30 to 50 days doesn't seem unreasonable.
I called the Red cross about donating blood. Monday, the high school in Canby is doing a blood drive. I am going to donate in the morning. Have a big breakfast then go in. I was warned it may not be the peaceful quiet you may find at other locations, but the convenience is worth it. Tom said they get a blood mobile at work several times a year.
I asked about donating platelets. I was told it had been so long since I donated blood, pre children, that they needed to check my whole blood to see if I made a good candidate. They look for people with high platelet counts to donate platelets. So, I am to tell them to check out my platelets when I donate, to see if I am a good candidate.
I tell Tom this. His theory is that since I am so accident prone I am probably a great candidate. My body must produce a lot of excess platelets to compensate for my clumsiness, where as he has not had a paper cut in years. He might have a very low count himself due to lack of need. We shall see come Monday. I am looking forward to donating blood for once.
wbc 4.7 range 6-17
mid 0.5 range .1- 1.1
Gran 3.4 range 1-8.5
rbc 3.09 range 3.1- 4.5
hgb 7.8 range 10.5 -13.5
plt 6 range 300-750
Last Thursday Riley received one unit of red and one platelet. He needs platelets again. Red is marginal. We could push it until next week or get another unit. Every unit gets us closer to that horrible moment when Riley's body starts rejecting transfusions. These are not bad numbers for Riley. I just remember how freaked out the ER was to see these kind of numbers and they are in the business of seeing bad numbers.
The reference range keeps changing on us. I think it is to keep us from being freaked out ourselves. Riley has been invited to a special summer camp. It is put on by the American cancer society. Nurses and a doctor from Doernbecher attend and are on hand with meds. He can take his brother with him. The problem is its the week before we are to leave for NY. That is a lot to do.
The doctor is still encouraging. He said at worst Riley could take a transfusion right before we leave on our trip so his body is stoked up. Hopefully though, that will not be necessary.
We are really encouraged about the wbc. The doctor adjusted the blood booster shot to every other day. I only wish the platelets and reds would hold consistently also. It is just amazing how researchers have been able to target that exact cell growth so successfully. If they could do it for the other two segments as well life would be smooth sailing. The Gran going up is encouraging. It represents the percentage of new cell production.
The doctor worked on getting Riley involved in our conversation. He wants to make sure Riley is proactive with his treatment. Riley needs to be responsible for his meds and his own future.
Riley sits curled up in the recliner in our cubicle while the doctor visits. His knees are up to his chest. He listens and responds, but you can tell he would rather not listen too closely. He doesn't want to hear anything negative. Its all good, so he uncurls. The doctor has him move to the examination bed so he can check his stomach. He looks for enlarged organs, but all is well. Riley giggles as the doctor presses on his abdomen area. Riley is very ticklish.
Jen is visiting. She asks, with Riley's improving white blood cells, can people who might be sick or getting over being sick, be around Riley. The answer is no. Riley may be improving, but his numbers are no where near normal, and we must remember that. Before the platelets, Riley received an antibiotic drip that will protect him for a month from pneumonia . Next month if his numbers are still better, they will switch to another kind of antibiotic. This stuff is pretty potent and hard on the organs.
Tom had a list of questions for me to ask. He had to work. The doctor missed him at our visit. I think he appreciated the knowledgeable conversation and questions that Tom would put to him. The first question was would another bone marrow aspiration (biopsy) show anything definitively. Not for a year was the answer. I think Tom would have Riley poked every month so he could chart it just like running a trial on his machines at work.
I also ask for a clarification. The numbers in May, will they stay there or continue to go up? Tom thought they might settle. The doctor tells me the numbers will continue to go up even after May. May was the time to discuss whether we do this treatment again, hold off and wait some more, or go looking for that donor and begin the marrow transplant process. Riley is disinclined to do marrow. Patience is my mantra. The problem is those red cell transfusions, he can only take so many. He has to get beyond red transfusions or else. The doctor also says to tell Tom to put off that discussion until the end of May, not the beginning as originally discussed. There is no rushing the numbers.
The Doctor had said 1 to 3 months minimum to see signs of improvement. That was just to see signs not the improvement finale. It all comes back to how many and how often Riley gets red transfusions. He had two units of red the last weekend in February, in one transfusion, before we were discharged from the hospital. He has had two other transfusions since then, single units each, both last week; the ER and at clinic on last Thursday. I would say once a month, but Riley's numbers at 7.8 rbc indicate that he may need another transfusion next week. I would have hoped it would last longer. Red blood cells are supposed to last 100 days in a normal person. Figure a half life on the transfusion, since the blood received is already aged a little. So, 30 to 50 days doesn't seem unreasonable.
I called the Red cross about donating blood. Monday, the high school in Canby is doing a blood drive. I am going to donate in the morning. Have a big breakfast then go in. I was warned it may not be the peaceful quiet you may find at other locations, but the convenience is worth it. Tom said they get a blood mobile at work several times a year.
I asked about donating platelets. I was told it had been so long since I donated blood, pre children, that they needed to check my whole blood to see if I made a good candidate. They look for people with high platelet counts to donate platelets. So, I am to tell them to check out my platelets when I donate, to see if I am a good candidate.
I tell Tom this. His theory is that since I am so accident prone I am probably a great candidate. My body must produce a lot of excess platelets to compensate for my clumsiness, where as he has not had a paper cut in years. He might have a very low count himself due to lack of need. We shall see come Monday. I am looking forward to donating blood for once.
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