Riley and I oops yesterday. We forgot to take his pills with us to the hospital. he has to wait on his morning cyclosporine so they can draw blood and see what his low is. They told us not to worry and just take them as soon as we got home. I was disappointed they just wouldn't give us a hospital dose.
So after our day at the hospital getting platelets, we had to go directly home to take meds. I had hoped to stop on the way home and see about getting Riley shoes. he is squeezed into his old ones still. The doctors told us no excessive driving with Riley. Why take the risk of an accident. Its one reason why I am driving the Jeep and not the Taurus to the hospital, even though the Taurus gets much better mileage. I feel like I am in a tank in the jeep, very solid and safer. So once home I don't want to take him out again. Its one thing to stop on the way home. Its another to get back in the car for a trip that would also take us on the freeway for a purchase that can be done on another day.
I noticed the platelets they gave Riley yesterday had the expiration date of the eighth. Yesterday was the eighth. I am wondering how his numbers will be on Thursday when his platelets weren't fresh. I know that sometimes there are limited supplies, and we are using up a lot of blood, but I wish the bag had been fresher. I wonder what Tom would have done. Would he have noticed and asked for a fresher bag? Or am I just being uptight and accept that it may be all they had available, Negative and old.
sounds a little like me at the moment. Riley noticed the gray in my hair. It Runs all the way up the side of my face and he tells me he can see it at the roots on top. I need to get to the store for a box of color. Its spring and I need mood lifters so I think I will go lighter this spring. I enjoy being blond. The family agrees. Tom and the boys say lighter. I tell Riley that half the gray is his father's fault and the other half is Riley's. He tells me then that he gets to pick the color.
I am going to make Trevor the eye appointment and the dentist. He needs a little medical attention also, if only for his peace of mind. He has been really helpful lately, not whining about chores. Tom had a talk with him about talking back to me. He was getting so big it was hard for me to be firm. He is so young, yet in the body of a teenager. He as been too big to spank for several years now. He can whine me to oblivion sometimes, so I cave. Once a parent caves the child knows mom will do it again. He will whine forever. He wants his own computer, I told him though, grades, Only for grades. I am firm on this point. What ever it takes to get Trevor's grades up.
We looked last night. The grades are better in some areas but still need work in humanities and science. He is to speak to the teachers today. Math has improved but there is still room for more improvement. In other words the only classes he is doing well in are PE, Wellness, and Band. Not that these aren't important classes, but....
Trevor can have such joy in life. Just living in the moment, enjoying the company. He is so laid back compared to Riley. Riley has to be on top, keep the edge, that competitive streak. I told Riley that he bragged to the teacher About how smart he was, now he has to live up to it. Last night Riley worked for two hours on his humanities. He is not going to let someone think he is less intelligent than he really is. he has to live up to the reputation he wants.
I need to vaccum today. The dog shedding never bothered me before, but it does now. He sheds everywhere, and in huge clumps of black on my white carpet. I am this close to just giving him a summer crew cut like the boys get. My mom did a fantastic job grooming him when she had him. I saw my girl friend's cavalier the other day. The comparison was dramatic. My dog looked good, all trimmed up and handsome. I hadn't realized how much trimming my mom did until I saw that other dog. Then I wondered if she had taken the dog to the groomer since she did such a nice job. I am told she did it all with patience and a whole lot of time. That is probably the only thing keeping me from shaving it all off to stop the shedding, is that she did such a nice job I don't want to ruin it. I do hate those black hair balls though on our white carpets, and I hate vaccuming every day.
Tuesday, March 9, 2010
Monday, March 8, 2010
transfusions
Give a teenager steroids and they will even clean out a hospital kitchen. Riley has been eating since we arrived at the hospital. He has fallen in love with chef Boyardee beef ravioli. two servings and popcorn and hot cocoa with milk and he is still eating. His weight was 52.6 and climbing this morning. two weeks ago he was 51 kilos and falling. Last night after dinner he asked for steak. Of course I had burned the grilled cheese again so he probably was legitimately hungry.
I asked the doctor about Riley's blood type. Today he is receiving A negative. That is important when getting red cells as they have negative and positive receptors. It is not so important with platelets. I asked about his white cells since his numbers looked so good. He said it means nothing until he hits 5 . Whites, because they replace themselves twice a day have no standard at Riley's level. But the news can't deflate my optimism. Riley looks and acts healthy.
Tom said the same thing the other night. He will not argue for the bone marrow as long as Riley seems to be doing well under this treatment. Quality of life is important. If Riley were sleeping a lot and listless, Tom might push a little harder for the bone marrow. Insurance does play a significant role in that decision. Insurance knows that bone marrow could turn nasty and end up being an open check book, so they discourage it until they know this treatment has been tried and failed. It is irritating that they have a say in our treatment decisions, but theirs is a business decision. You just have to know how to work the system.
On another irritating note, Tom could not adjust our flexible spending this year. It is set in November. Tom could divorce me or have a baby and make an adjustment, but getting sick in February with a life threatening illness doesn't qualify as a life change. This is why Tom and I advocate Medical IRAs and not flexible spending accounts. Well, we work with the system we have. It could be better, though. Tom makes too much money to be allowed to do it independent of the company's health plan. Some restrictions prevent us. I can't even take a deduction for an IRA contribution.
I think about my dad a lot recently. He was diagnosed at stage 4 colon cancer. It metastasized to his liver before they even found it. We all thought less than six months max. He bought himself two and a half years, by shear will and determination. He would nibble through the nausea. He would force himself to get up and get on his bike or walk each day at 7:30 in the morning. He maintained the quality of life he wanted.
When Dad moved to the desert, he bought a small one story two bedroom for cash. He told the real estate agent he wanted secondary market. They must have looked at 100 houses. This was in 1995. He finally picked a home he knew he could stay in until the end if his health every changed. He achieved that goal. He was biking and running errands the week before his death. Less than three days of being bedridden before the end. My sisters and I were all able to see him when he was still able to function normally and we were able to be with him at the end. No regrets.
If not for his own strength of character, we would not have had that special extra time, that two years. I know my sisters and I will treasure that time as much as any other we had with him growing up. I will remember being crammed into the carmengia and later the rabbit with all six of us including my little brother. One of us would sit on the gear shift on a pillow. Children's Skis would run down the inside of the car blocking the doors. Dad would crank up the Eagles on tape. Somewhere before leaving the Portland area on I84, he would over heat and remove his sweater while driving with his knees going at least 65. He was young and happy and with his family on a mission to have fun. He was a morning person. Up early and raring to go. We would all drag ourselves out of bed wondering where dad got his energy and enthusiasm at 6:00 am.
Summers where the same. He would pick us up and head out to the boat. It used to be on the Willamette. We went through a lot of props hitting submerged logs or rocks beaching. I remember the eel slithering up over my sister's ski. I remember Dad hitting a bird and mucking up the prop. Gross, but good memories. When we got the boat into Lake Oswego, the lake was a lot more gentle on the boat. It was easier all around. We would start up the engine at 7:30 am, I liked the first ski because the lake was like glass. Not a ripple disturbed its surface on that first run. later the waves would start bouncing off the sides of the lake roughing up the surface. Late in the summer the wake would turn green with algae and we would all come out smelling a little of sewage. Dad approached sports the same way he approached everything in life, determined to do it on his terms.
I see a lot of my dad in Riley, his determination to have things his way, his pride in his intelligence and interest in knowledge. I have hopes that Riley has the determination to be strong again and take on the world.
I guess spending all this time in the hospital, is bringing up those memories of doing this with my dad not that long ago, or Tom's Father for that matter. Tom wants me to find out who put the hex on him and get it removed. Meanwhile, I just pray that Riley has that same grit my Dad showed all through his life. The shear determination to do things his way long as possible and still keep his life style intact.
Eventually, I would love to see Riley able to bike and ski again.
I asked the doctor about Riley's blood type. Today he is receiving A negative. That is important when getting red cells as they have negative and positive receptors. It is not so important with platelets. I asked about his white cells since his numbers looked so good. He said it means nothing until he hits 5 . Whites, because they replace themselves twice a day have no standard at Riley's level. But the news can't deflate my optimism. Riley looks and acts healthy.
Tom said the same thing the other night. He will not argue for the bone marrow as long as Riley seems to be doing well under this treatment. Quality of life is important. If Riley were sleeping a lot and listless, Tom might push a little harder for the bone marrow. Insurance does play a significant role in that decision. Insurance knows that bone marrow could turn nasty and end up being an open check book, so they discourage it until they know this treatment has been tried and failed. It is irritating that they have a say in our treatment decisions, but theirs is a business decision. You just have to know how to work the system.
On another irritating note, Tom could not adjust our flexible spending this year. It is set in November. Tom could divorce me or have a baby and make an adjustment, but getting sick in February with a life threatening illness doesn't qualify as a life change. This is why Tom and I advocate Medical IRAs and not flexible spending accounts. Well, we work with the system we have. It could be better, though. Tom makes too much money to be allowed to do it independent of the company's health plan. Some restrictions prevent us. I can't even take a deduction for an IRA contribution.
I think about my dad a lot recently. He was diagnosed at stage 4 colon cancer. It metastasized to his liver before they even found it. We all thought less than six months max. He bought himself two and a half years, by shear will and determination. He would nibble through the nausea. He would force himself to get up and get on his bike or walk each day at 7:30 in the morning. He maintained the quality of life he wanted.
When Dad moved to the desert, he bought a small one story two bedroom for cash. He told the real estate agent he wanted secondary market. They must have looked at 100 houses. This was in 1995. He finally picked a home he knew he could stay in until the end if his health every changed. He achieved that goal. He was biking and running errands the week before his death. Less than three days of being bedridden before the end. My sisters and I were all able to see him when he was still able to function normally and we were able to be with him at the end. No regrets.
If not for his own strength of character, we would not have had that special extra time, that two years. I know my sisters and I will treasure that time as much as any other we had with him growing up. I will remember being crammed into the carmengia and later the rabbit with all six of us including my little brother. One of us would sit on the gear shift on a pillow. Children's Skis would run down the inside of the car blocking the doors. Dad would crank up the Eagles on tape. Somewhere before leaving the Portland area on I84, he would over heat and remove his sweater while driving with his knees going at least 65. He was young and happy and with his family on a mission to have fun. He was a morning person. Up early and raring to go. We would all drag ourselves out of bed wondering where dad got his energy and enthusiasm at 6:00 am.
Summers where the same. He would pick us up and head out to the boat. It used to be on the Willamette. We went through a lot of props hitting submerged logs or rocks beaching. I remember the eel slithering up over my sister's ski. I remember Dad hitting a bird and mucking up the prop. Gross, but good memories. When we got the boat into Lake Oswego, the lake was a lot more gentle on the boat. It was easier all around. We would start up the engine at 7:30 am, I liked the first ski because the lake was like glass. Not a ripple disturbed its surface on that first run. later the waves would start bouncing off the sides of the lake roughing up the surface. Late in the summer the wake would turn green with algae and we would all come out smelling a little of sewage. Dad approached sports the same way he approached everything in life, determined to do it on his terms.
I see a lot of my dad in Riley, his determination to have things his way, his pride in his intelligence and interest in knowledge. I have hopes that Riley has the determination to be strong again and take on the world.
I guess spending all this time in the hospital, is bringing up those memories of doing this with my dad not that long ago, or Tom's Father for that matter. Tom wants me to find out who put the hex on him and get it removed. Meanwhile, I just pray that Riley has that same grit my Dad showed all through his life. The shear determination to do things his way long as possible and still keep his life style intact.
Eventually, I would love to see Riley able to bike and ski again.
waiting
This morning I must have changed my clothes 5 times. Ialmost felt like I was headed to a dance rather than the hospital. Riley looks good. I put on a hawaiin party dress then changed feeling it was a bit too cold outside still. I tried to squeeze into an old favorite, but it wouldn't zip up, thus the diet. I finally ended up in a conservative dark suit, but put a festive polka dot shirt with it, perfect.
We eat and drive to the hospital. Riley does need platelets. He is down to 4. But his other numbers are good. WBC is at 1.1 up from 0.3. Gran is .2 up from .1. HGB is 9.0 just below normal range 10.5-Even so, going a week without transfusion and not having any emergencies is fantastic.
We will be here a while having to do platelets, but I am still happy. Riley is working on his homework, maybe.
We eat and drive to the hospital. Riley does need platelets. He is down to 4. But his other numbers are good. WBC is at 1.1 up from 0.3. Gran is .2 up from .1. HGB is 9.0 just below normal range 10.5-Even so, going a week without transfusion and not having any emergencies is fantastic.
We will be here a while having to do platelets, but I am still happy. Riley is working on his homework, maybe.
Sunday, March 7, 2010
Fun weekend
Trevor came home Friday swearing he only missed 3 out of 23 on his history test. I tell him to bring me the corrected paper. I also ask if he happened to ask about his missing math pages from missed classes this week. He said he will get them Monday. I tell him "good grades, good dinner". Riley's friend canceled. He has family sick. So Riley starts calling other friends to fill his weekend.
It is hard for him all week with everyone else going off to work or school and being stuck in the house. He was even bored enough to take the dog for a leash walk. I am going to encourage that exercise more often. I need an Exercycle for Riley for those rainy days or when he needs a quick vent of energy. He has an Exercycle now, but it has moving arms. he can't use moving arms because the picc in his arm will curl up. No free weights or upper body strengthening allowed. I used to have a standard Exercycle but we got rid of it for this improved version. Now I need the standard version back.
Saturday, Tom on the other hand, cringes to hear Riley inviting friends for the weekend. He can't even be home in the quiet of his own home without being invaded. Its a beautiful weekend. I encourage him to golf, but its nascar qualifying on Saturday, and race day on Sunday. He wants to camp in front of the TV, have some real down time.
I go outside and mow the lawn and weed the beds. Its a perfect day for it, with recent rains to loosen the soil. Riley comes out and comments on the sweet smells of fresh cut grass. He sits in the sun basking in its rays watching me work, knowing I can't ask him to help. He tells me he has convinced a dear friend to come with her girls, but they wont be down until later. Tom comes out and asks why I mowed around our spare car and didn't move it out of the way. I tell him I was in a groove and just kept going. I didn't want to stop my momentum. Besides I am planning to dig up that part of the yard and bark it. The tires have dug the grass up into an ugly groove. We need the parking spot too often. He asks if he is going to be invaded by women only. I give him the affirmative. He heads back into the house to the bedroom to hide.
Later Tom sneaks out for supplies of chips and the new movie 2012 in Blueray and beer for himself. Now he can be content with company. We will all watch a movie of his picking and he can take back his chair in the living room and the remotes. The boys are thrilled. Nothing is better than an action packed family disaster film on a big screen TV in HD.
My sister calls returning Riley's inquiry from earlier Saturday. She can drop my niece off. I invite my niece for the sleep over. She loves coming to our house. We have all sorts of great food she usually never gets in her own gluten wheat free home. Kind of like a grandma, I can spoil her a little and give naughty treats then send her home. We pick up Papa Murphy's double stuffed 5 meat pizza for dinner.
My girlfriend arrives later in the evening with her girls. The kids go off to play. We haven't spoken much over the last few weeks. I had spoken to her early on in our crisis but not much since. She was the one that helped me clean. She also had a horrible experience recently and I figured it was a bit too painful right now seeing us going through our problem so soon after her own crisis. I was right. It was so good to see her now though, with this hope in the air. Riley still looks good, as a matter of fact his acne seems to be subduing itself.
Once it's dark enough and Tom feels like he can stand a room full of hormonal women. He bravely leaves his cave upstairs and comes down to start the movie. It's after 9:00pm. If you have not had the experience of watching TV with Tom, well, I truly recommend ear plugs. I usually offer them around during the early previews. In this movie of total world disaster, Tom cranks it up so the floors vibrate to the base booming. My girlfriend and I hide in the front room with her youngest, and talk. The movie is just a bit too scary for a 10 year old and too loud for us. I know I will catch the movie later. I want to spend time with my girlfriend talking, not watching TV. No one told me the movie was almost 3 hours.
My friend is exhausted after a day of cleaning her own house, shopping at the mall, and getting lost on her way to my house in the dark. At 11:00 pm she puts herself to bed. Her daughter is already asleep, though I have no idea how they can sleep with that racket in the living room. The doors help a little, but not much.
I go join Tom and the kids. I am still able to catch the second half of the movie. The funny thing about children with inquiring minds is they tend to pick apart the unrealistic scenes. Tsunamis only happen as they hit shallower land, earthquakes in the middle of the ocean don't topple ships. Shh, Riley, watch the movie. It's good, but it is one long movie. We get to bed after 12:30am. My niece falls asleep in her clothes with her shoes still on and wearing her hat she had on all day.
In the morning I awaken to the children playing the movie again for the little girl who had not wanted to watch it in the dark. My girlfriend, who is a fantastic cook, makes french toast for everyone. Such a long movie gives us plenty of time to sneak off for a pedicure across from Fred Meyers. It was wonderful. A great deal for only $20, with a paraffin wax and a leg massage for that price. When my sister comes for her daughter, I tell her she can go with us next time.
It is a wonderful weekend and I even got my lawn mowed and weeded the beds. Productive and fun. Riley still looks good. I can't wait to find out his numbers tomorrow. The zits are still under control.
It is hard for him all week with everyone else going off to work or school and being stuck in the house. He was even bored enough to take the dog for a leash walk. I am going to encourage that exercise more often. I need an Exercycle for Riley for those rainy days or when he needs a quick vent of energy. He has an Exercycle now, but it has moving arms. he can't use moving arms because the picc in his arm will curl up. No free weights or upper body strengthening allowed. I used to have a standard Exercycle but we got rid of it for this improved version. Now I need the standard version back.
Saturday, Tom on the other hand, cringes to hear Riley inviting friends for the weekend. He can't even be home in the quiet of his own home without being invaded. Its a beautiful weekend. I encourage him to golf, but its nascar qualifying on Saturday, and race day on Sunday. He wants to camp in front of the TV, have some real down time.
I go outside and mow the lawn and weed the beds. Its a perfect day for it, with recent rains to loosen the soil. Riley comes out and comments on the sweet smells of fresh cut grass. He sits in the sun basking in its rays watching me work, knowing I can't ask him to help. He tells me he has convinced a dear friend to come with her girls, but they wont be down until later. Tom comes out and asks why I mowed around our spare car and didn't move it out of the way. I tell him I was in a groove and just kept going. I didn't want to stop my momentum. Besides I am planning to dig up that part of the yard and bark it. The tires have dug the grass up into an ugly groove. We need the parking spot too often. He asks if he is going to be invaded by women only. I give him the affirmative. He heads back into the house to the bedroom to hide.
Later Tom sneaks out for supplies of chips and the new movie 2012 in Blueray and beer for himself. Now he can be content with company. We will all watch a movie of his picking and he can take back his chair in the living room and the remotes. The boys are thrilled. Nothing is better than an action packed family disaster film on a big screen TV in HD.
My sister calls returning Riley's inquiry from earlier Saturday. She can drop my niece off. I invite my niece for the sleep over. She loves coming to our house. We have all sorts of great food she usually never gets in her own gluten wheat free home. Kind of like a grandma, I can spoil her a little and give naughty treats then send her home. We pick up Papa Murphy's double stuffed 5 meat pizza for dinner.
My girlfriend arrives later in the evening with her girls. The kids go off to play. We haven't spoken much over the last few weeks. I had spoken to her early on in our crisis but not much since. She was the one that helped me clean. She also had a horrible experience recently and I figured it was a bit too painful right now seeing us going through our problem so soon after her own crisis. I was right. It was so good to see her now though, with this hope in the air. Riley still looks good, as a matter of fact his acne seems to be subduing itself.
Once it's dark enough and Tom feels like he can stand a room full of hormonal women. He bravely leaves his cave upstairs and comes down to start the movie. It's after 9:00pm. If you have not had the experience of watching TV with Tom, well, I truly recommend ear plugs. I usually offer them around during the early previews. In this movie of total world disaster, Tom cranks it up so the floors vibrate to the base booming. My girlfriend and I hide in the front room with her youngest, and talk. The movie is just a bit too scary for a 10 year old and too loud for us. I know I will catch the movie later. I want to spend time with my girlfriend talking, not watching TV. No one told me the movie was almost 3 hours.
My friend is exhausted after a day of cleaning her own house, shopping at the mall, and getting lost on her way to my house in the dark. At 11:00 pm she puts herself to bed. Her daughter is already asleep, though I have no idea how they can sleep with that racket in the living room. The doors help a little, but not much.
I go join Tom and the kids. I am still able to catch the second half of the movie. The funny thing about children with inquiring minds is they tend to pick apart the unrealistic scenes. Tsunamis only happen as they hit shallower land, earthquakes in the middle of the ocean don't topple ships. Shh, Riley, watch the movie. It's good, but it is one long movie. We get to bed after 12:30am. My niece falls asleep in her clothes with her shoes still on and wearing her hat she had on all day.
In the morning I awaken to the children playing the movie again for the little girl who had not wanted to watch it in the dark. My girlfriend, who is a fantastic cook, makes french toast for everyone. Such a long movie gives us plenty of time to sneak off for a pedicure across from Fred Meyers. It was wonderful. A great deal for only $20, with a paraffin wax and a leg massage for that price. When my sister comes for her daughter, I tell her she can go with us next time.
It is a wonderful weekend and I even got my lawn mowed and weeded the beds. Productive and fun. Riley still looks good. I can't wait to find out his numbers tomorrow. The zits are still under control.
Friday, March 5, 2010
Treats
The sun is shining on and off today. Trevor asks me why I am on Daddy's side of the bed when he comes in before leaving for school. I tell him I like to watch the sun come up in the morning and shine the light on my face. My side of the bed is away from the window. He says he likes watching the sun come up also, but its hard to get up early enough. Now that spring is approaching, the trees are blooming. After yesterday's news, I have tentative hopes.
Tom tells me to take Riley to Fred Meyer today when its not crowded. Get him out of the house. I grab a bright sunny spring skirt that reflects my mood. Riley tells me he wants to go to Dennie's for breakfast. I figure if its not too busy we can risk it. Then we'll go to Fred's for shoes.
Easy outing.
I am nervous when we enter the restaurant. Next time I take Riley I am taking a box of wipes also. Just his touching the menus every one else has handled makes me realize the exposure. But as Tom said, we don't want him to feel like he needs to be kept in a bubble. The restaurant is not busy, which helps my stress. Riley orders hot cocoa with whip cream, the steak strips and eggs with tortea wraps with sour cream, peppers and onions, and hash browns.
I order the french toast and eggs with sausage and bacon. Riley likes french toast but he wanted the steak. He eats the steak strips with the sour cream and all his hash browns and a few bites of eggs. Then he lays into my plate. He eats all the french toast and my bacon. I am impressed. He never eats this much. The steroids must be finally effecting his appetite. I eat the eggs and veggies wrapped in the torteas and he eats everything else. We enjoy the moment.
I send him to wash his hands while I pay the bill. We then walk across the parking lot o Fred Meyer. I tell him to grab the Clorox wipes first before touching the cart handle and we wipe it down. I used to think people who did that were a little paranoid. Now here I am wiping it twice in case Riley missed a spot. We head into the store for new shoes.
It turns out Fred Meyer doesn't carry shoe sizes past 13. I tell Riley we will just have to order a pair on line. I am not going to drive that boy to the mall. Not yet anyway. We go to the toy section so he can look at games and rockets for a minute. He wants a rocket but I tell him not until his homework is done. Maybe it will inspire him to get some work done.
I drop him at the house. He is going to get his printer he got at Christmas hooked up and connected to his computer. He needs to print off some assignments and doesn't want to use my computer. I go off to treat myself to a nail manicure repair. Under the pressures of the last week I had ripped off some of my acrylic nails. Tom noticed yesterday at the hospital. He asked if that damage was caused by gardening. Sure, gardening did the damage. So, I went and got my nails redone. They look lovely.
When I got home, Riley had his printer up and running. Not wireless yet, but I bet it will be by the end of the weekend. He had printed off his work. Now he just has to do it.
Trevor has not called so we may be over that hurdle for the moment. If he gets a good grade on that history test I will take him out to Dennie's for a double cheese burger and soup, which is his favorite. But I have to have test in hand before reward. He always says he did fine, wonderful in fact. I will wait for the grade.
I ask Riley how he is feeling. He puts his hand behind his head, flips what little hair he has with his crew cut, and thrusts out his hip. "I feel lovely, Mom", he says teasingly, acting like a runway model. Now, if I can only get my pampered boy to settle down and do a little school work. Life is beginning to feel normal. He even made his own lunch, Kraft macaroni and cheese.
Tom tells me to take Riley to Fred Meyer today when its not crowded. Get him out of the house. I grab a bright sunny spring skirt that reflects my mood. Riley tells me he wants to go to Dennie's for breakfast. I figure if its not too busy we can risk it. Then we'll go to Fred's for shoes.
Easy outing.
I am nervous when we enter the restaurant. Next time I take Riley I am taking a box of wipes also. Just his touching the menus every one else has handled makes me realize the exposure. But as Tom said, we don't want him to feel like he needs to be kept in a bubble. The restaurant is not busy, which helps my stress. Riley orders hot cocoa with whip cream, the steak strips and eggs with tortea wraps with sour cream, peppers and onions, and hash browns.
I order the french toast and eggs with sausage and bacon. Riley likes french toast but he wanted the steak. He eats the steak strips with the sour cream and all his hash browns and a few bites of eggs. Then he lays into my plate. He eats all the french toast and my bacon. I am impressed. He never eats this much. The steroids must be finally effecting his appetite. I eat the eggs and veggies wrapped in the torteas and he eats everything else. We enjoy the moment.
I send him to wash his hands while I pay the bill. We then walk across the parking lot o Fred Meyer. I tell him to grab the Clorox wipes first before touching the cart handle and we wipe it down. I used to think people who did that were a little paranoid. Now here I am wiping it twice in case Riley missed a spot. We head into the store for new shoes.
It turns out Fred Meyer doesn't carry shoe sizes past 13. I tell Riley we will just have to order a pair on line. I am not going to drive that boy to the mall. Not yet anyway. We go to the toy section so he can look at games and rockets for a minute. He wants a rocket but I tell him not until his homework is done. Maybe it will inspire him to get some work done.
I drop him at the house. He is going to get his printer he got at Christmas hooked up and connected to his computer. He needs to print off some assignments and doesn't want to use my computer. I go off to treat myself to a nail manicure repair. Under the pressures of the last week I had ripped off some of my acrylic nails. Tom noticed yesterday at the hospital. He asked if that damage was caused by gardening. Sure, gardening did the damage. So, I went and got my nails redone. They look lovely.
When I got home, Riley had his printer up and running. Not wireless yet, but I bet it will be by the end of the weekend. He had printed off his work. Now he just has to do it.
Trevor has not called so we may be over that hurdle for the moment. If he gets a good grade on that history test I will take him out to Dennie's for a double cheese burger and soup, which is his favorite. But I have to have test in hand before reward. He always says he did fine, wonderful in fact. I will wait for the grade.
I ask Riley how he is feeling. He puts his hand behind his head, flips what little hair he has with his crew cut, and thrusts out his hip. "I feel lovely, Mom", he says teasingly, acting like a runway model. Now, if I can only get my pampered boy to settle down and do a little school work. Life is beginning to feel normal. He even made his own lunch, Kraft macaroni and cheese.
Thursday, March 4, 2010
Size matters
Riley put his size 13 shoes on this morning."Mom, my shoes are too tight." I felt the toes. He was right at the end, definitely too tight. Tomorrow we will go early to the store and get him a new pair. Trevor will get the old ones. By the time Trevor is done they are good only for the garbage.
I wonder if it is the growth hormones? something to ask the doctor. Tom and I joke if the feet are the only things that are going to grow. The joke goes right over the boys heads. I do wonder how tall Riley will be when we are done. The nurses measure his height and weight at every visit. It is now taking on greater significance. They may want to know about his shoe size change.
While talking to the doctor, the doctor inquires why the subscription is in 25 milligram doses. Riley can take 50 milligram size pills if he wants. I tell the doctor in this case size matters. Riley likes small pills, the smaller the better.
Riley has also discovered Yoplait yogurt. Expensive brands seem to be the way of my family. I can't even buy cheap mac and cheese. Tom says buy Kraft. The boys like the deli. All these brands my family likes are three times as expensive as the generic store brands. I will never be able to compete in that $60 a week grocery challenge. At least the boys like eggs and waffles. Too bad Tom doesn't.
Trevor called in the middle of our appointment today. He was nauseated again at school and wants to be picked up. I can't get there for an hour, so I just tell the school to give him a vomit bucket and I will be there as soon as I can. After dropping Tom and Riley off at the house I get Trevor. We grab his backpack. The advantage to picking him up like that is his teacher catches me and tells me he has a history test tomorrow.
Trevor sleeps all afternoon. After dinner we work on the test areas: Thomas Paine, Patrick Henry, Thomas Jefferson, Ben Franklin, Treaty of Paris, Olive Branch Petition. It was fun looking it up and trying to remember it all. I'll quiz Trevor again in the morning. I hope he gets a good grade. He ate his dinner so I hope the stomach bug is gone. I will still have him use our bathroom and continue wiping down Riley's.
It will be a long weekend staring at Riley's zits, waiting for Monday. If his zits bleed, we'll take him in. We told Riley to let us know if he has any weird bruises or sores or the rash reappears. It would be cool though if we make it to Monday without incident. I will take it as a good sign then that we are on the up hill climb now, if we go a week without transfusions.
I wonder if it is the growth hormones? something to ask the doctor. Tom and I joke if the feet are the only things that are going to grow. The joke goes right over the boys heads. I do wonder how tall Riley will be when we are done. The nurses measure his height and weight at every visit. It is now taking on greater significance. They may want to know about his shoe size change.
While talking to the doctor, the doctor inquires why the subscription is in 25 milligram doses. Riley can take 50 milligram size pills if he wants. I tell the doctor in this case size matters. Riley likes small pills, the smaller the better.
Riley has also discovered Yoplait yogurt. Expensive brands seem to be the way of my family. I can't even buy cheap mac and cheese. Tom says buy Kraft. The boys like the deli. All these brands my family likes are three times as expensive as the generic store brands. I will never be able to compete in that $60 a week grocery challenge. At least the boys like eggs and waffles. Too bad Tom doesn't.
Trevor called in the middle of our appointment today. He was nauseated again at school and wants to be picked up. I can't get there for an hour, so I just tell the school to give him a vomit bucket and I will be there as soon as I can. After dropping Tom and Riley off at the house I get Trevor. We grab his backpack. The advantage to picking him up like that is his teacher catches me and tells me he has a history test tomorrow.
Trevor sleeps all afternoon. After dinner we work on the test areas: Thomas Paine, Patrick Henry, Thomas Jefferson, Ben Franklin, Treaty of Paris, Olive Branch Petition. It was fun looking it up and trying to remember it all. I'll quiz Trevor again in the morning. I hope he gets a good grade. He ate his dinner so I hope the stomach bug is gone. I will still have him use our bathroom and continue wiping down Riley's.
It will be a long weekend staring at Riley's zits, waiting for Monday. If his zits bleed, we'll take him in. We told Riley to let us know if he has any weird bruises or sores or the rash reappears. It would be cool though if we make it to Monday without incident. I will take it as a good sign then that we are on the up hill climb now, if we go a week without transfusions.
Doctor's visit
We arrive at Dornbechers 45 minutes early. Nothing like being prompt and on time. Tom has taken the day off. Uncharacteristically Tom has me drive and sits in the back seat. He has a spiral notebook and is making a list of questions for the doctor. I drive well enough and cautiously that everyone is pleased. I drop Tom and Riley at the front door of the building and go park.
There is a new movie on the screen in the waiting room we have not seen, "The Reef". Riley comments on how its a G movie, which is probably why we haven't watched it before. We get lucky, They call his name soon and we don't have to watch any more of the movie. They have a surgical nurse waiting to clean his Picc. She was up for another case and our nurse grabs her to get Riley done. Blood is drawn and results come back shortly.
The numbers are better or the same as Monday. A marginal improvement, enough to skip Platelets today. We will be back on Monday next week unless we see a big change and think he needs them sooner. This is also after Red cells on Saturday, so holding these levels is a good neutral signal of maybe.
The Doctor comes in. We let Riley listen to the blood work news. Then Tom would prefer to talk to the Doctor with out Riley. I excuse Riley to the playroom. He raises an inquiring brow that we would talk about him without his presence, but he goes. The questions range from what are good expected returns on the numbers. Where will we settle out that are considered acceptable success. How many donors say no. Is the bone marrow success being endangered by the delay. Do the number of transfusions interfere with success of transplant.
Tom wants to make sure that Riley lives a normal life, that he doesn't have to be protected or cossetted. Tom doesn't want Riley living in a bubble or having to be careful the rest of his life.
The doctor responds that this protocol is the standard initial treatment. We have not done anything to jeopardise the bone marrow. This is a lot less invasive and worth a try. He says the numbers considered acceptable are around 100,000 platelets from the 5000 to 20,000 that Riley has been running. That is still low, below the normal range. Some people do get back to normal, about 30% treated. 20% of donors say no, but Riley had a couple good matches so not to be concerned. Tom does not want to have mediocre results. It would make decisions much harder. Good failure or good success numbers are much easier decisions.
Then there are the questions that are causing family issues. How safe and paranoid do we really need to be. The Doctor says we do not have to get rid of plants, but no gardening. If some one is sick have them use a different bathroom from Riley. Riley can go out, but not while its crowded. The Prednizone is what is crushing his immune system right now, so in three weeks he will be slowly weaned off it and will not be so at risk.
Can we fly on a plane come July and go to NY/DC? Yes,by then Riley should be fine to fly and in crowds, if this is successful. We will know in three months. Today we skipped a transfusion. Sounds positive to me. Will it be good enough come May? I hope so.
Meanwhile I will sit down with Riley and pick high school classes with him. I need to find out from his teachers which levels they are recommending for my college bound student. With some success with some modern medicine this boy will be on track again. Maybe no sports for a while, but he had grown out playing much contact sports anyway. I think his father might be sorry about football, but Trevor can still play.
I am off to the pharmacy. They did not have the prescription in stock so I am driving elsewhere. They said they would correct their inventories for the next three months and apologized for the inconvenience. Its irritating because we thought we had this covered a week ago when we discussed it with them. They just didn't pick up on the fact we would be back so often and order enough. They will now.
There is a new movie on the screen in the waiting room we have not seen, "The Reef". Riley comments on how its a G movie, which is probably why we haven't watched it before. We get lucky, They call his name soon and we don't have to watch any more of the movie. They have a surgical nurse waiting to clean his Picc. She was up for another case and our nurse grabs her to get Riley done. Blood is drawn and results come back shortly.
The numbers are better or the same as Monday. A marginal improvement, enough to skip Platelets today. We will be back on Monday next week unless we see a big change and think he needs them sooner. This is also after Red cells on Saturday, so holding these levels is a good neutral signal of maybe.
The Doctor comes in. We let Riley listen to the blood work news. Then Tom would prefer to talk to the Doctor with out Riley. I excuse Riley to the playroom. He raises an inquiring brow that we would talk about him without his presence, but he goes. The questions range from what are good expected returns on the numbers. Where will we settle out that are considered acceptable success. How many donors say no. Is the bone marrow success being endangered by the delay. Do the number of transfusions interfere with success of transplant.
Tom wants to make sure that Riley lives a normal life, that he doesn't have to be protected or cossetted. Tom doesn't want Riley living in a bubble or having to be careful the rest of his life.
The doctor responds that this protocol is the standard initial treatment. We have not done anything to jeopardise the bone marrow. This is a lot less invasive and worth a try. He says the numbers considered acceptable are around 100,000 platelets from the 5000 to 20,000 that Riley has been running. That is still low, below the normal range. Some people do get back to normal, about 30% treated. 20% of donors say no, but Riley had a couple good matches so not to be concerned. Tom does not want to have mediocre results. It would make decisions much harder. Good failure or good success numbers are much easier decisions.
Then there are the questions that are causing family issues. How safe and paranoid do we really need to be. The Doctor says we do not have to get rid of plants, but no gardening. If some one is sick have them use a different bathroom from Riley. Riley can go out, but not while its crowded. The Prednizone is what is crushing his immune system right now, so in three weeks he will be slowly weaned off it and will not be so at risk.
Can we fly on a plane come July and go to NY/DC? Yes,by then Riley should be fine to fly and in crowds, if this is successful. We will know in three months. Today we skipped a transfusion. Sounds positive to me. Will it be good enough come May? I hope so.
Meanwhile I will sit down with Riley and pick high school classes with him. I need to find out from his teachers which levels they are recommending for my college bound student. With some success with some modern medicine this boy will be on track again. Maybe no sports for a while, but he had grown out playing much contact sports anyway. I think his father might be sorry about football, but Trevor can still play.
I am off to the pharmacy. They did not have the prescription in stock so I am driving elsewhere. They said they would correct their inventories for the next three months and apologized for the inconvenience. Its irritating because we thought we had this covered a week ago when we discussed it with them. They just didn't pick up on the fact we would be back so often and order enough. They will now.
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