The Zoo

Its a March Tuesday, its raining, its pouring, its the northwest in spring time. Not to be deterred by the weather, Jen suggested we all go to the zoo. It was a guaranteed no crowds day with crappy weather looming constantly. two year old Cole would get some outdoor activities with his cousin Riley. I was sceptical at first. Luckily I had heavy woolen gloves and ski cap and extra wind jacket in the car. Riley had his favorite heavy ski jacket with attached hood. We were set to brave the elements.

We arrived at 1:15 at the zoo. Parking was available right up by the front gates. A clear indicator that there would be no crowds. It was blustery and raining. When you stood still you could feel the cold trying to work its way through the layers of clothing. Even the animals looked wet and unhappy. The advantage was they were active also. The lions wondered around the enclosure trying to stay warm, checking all their indoor access doors to see if perhaps someone might let them in out of the cold. They even came over to the glass and checked us out for a change.

Momma and baby elephant were inside eating. Momma elephant used her trunk like a giant snow blower to gather into a pile stray grasses from beyond the fence and bring them within reach, where she could scoop them up in her trunk. It was very impressive.

The baboons were being fed romaine lettuce. It was dropped onto the fencing above the cage, so they had to climb and pick it as if it were fruit in the forest. The alpha male was impressively huge with 2 inch fangs and a rainbow of color showing on his rump. He came right up to the glass with a grin. We were told by the docent to grin back and shake our heads. Its a sign of hello. To nod would have shown aggression and made him angry. He was not a fellow you would want to anger. The new primate exhibit is expected to open some time in July if the the rains let the work continue on schedule.

The Sea lions were still an awesome sight, swimming right up the glass as people took photos. They hung suspended in the water staring back at us. Riley noted they looked like they were both missing an eye. It may be why they are in the exhibit. Perhaps they are rescue animals that would not survive anymore in the wild. One was missing a huge chunk of rear fin.

By the time we got to the penguins on our way out, the penguins were all quiet and napping and so was Cole. He was out cold in his stroller by the time we reached our car. It rained regularly on us all day, and was cold. But I told my sister she had made a good call. The animals were incredible. Every display had activity. Without the crowds, we had uninterrupted views. The animals interacted with us in a way they never had before. I am guessing it was the lack of crowds and the cold that kept them engaged. We were the only action all day except for a few other brave souls wondering about.

Riley had a great time. We even stopped and got some chicken strips and fries from the Africa Cafe for him and some warm drinks for the adults. None of the out door cafes were open. I liked this cafe anyway because it was inside and warm.

Riley was tired from all the walking. He is napping now. He took his evening blood booster shot, then crashed out on the couch. We'll see if we over did it with the walking when the teacher comes tomorrow. Riley has homework still to do, depending on how long he sleeps, if he has time to do homework tonight.

Trevor was not happy he didn't get to go, but he went out with us on Sunday to that great restaurant, which Riley could not go to because of the crowds. The exercise I am hoping was good for Riley also. He hasn't done much activity. We need to get out and walk more, once the weather improves.

Good weekend

No problems. We even took the boys with us to a friend's home for dinner. I had to drag Tom away at the end of the night or he would have kept talking through the wee hours. It was delightful to be out.

My sister came to visit and Trevor and I went out to dinner with her. You should have seen Trevor in dress shoes, a black silk shirt and his leather jacket. He was a handsome escort for his mother. It was a popular downtown restaurant so we opted not to take Riley. The crowds would have been a problem. Margaret had reservations, which was a good thing. The place was standing room only, shortly after we arrived. Our reservations were for 5:45. The food was divine. Trevor had the sea bass special and ate every bite. I had the insalata caprese to start (tomatoe and fresh mozzerella), then the scampi. The sauces were delicious. Piazzo Italiano on 11th and Johnson Street, in the Pearl. Do not pass up the desserts either.

There was an accordion player to entertain us. He plays Sunday nights, which is why Margaret had us go there. Hew is musically talented himself. He knew all the history and music Michael the accordianist was playing. They traded quips about "Frank", and the old days in New York and Vegas. Of course New York New York was played just for Jen and Cole. Cole was entertained quite well through out the meal. He even tossed coins into the fountain, a guarantee we will be back.

Riley and Tom stayed home. Someone needs to be handy just case Riley needs someone.


I am going to go buy Pine today and make a home made book shelf unit for the game room. Floor to ceiling and just get it done. The room is horrible with all the toys in it and no where to put them. I know it will turn out well when I am done. I built another unit when one of the melamine's collapsed and I had no bookshelves for books. Pine is a soft wood, so I wont make the spans too long to compensate. I also wont paint them right now. I just want to get it up.
And the room cleaned. I have a friend coming from Seattle to visit. She will be staying in it if I have it cleaned. Otherwise, she can stay in the front room. It is nice to have options. But I do need to get that game room done. Oak is way too expensive.

Thursday

Since stopping the Prednizone steroid, Riley's appetite has returned to normal. His energy has also declined a little. He does not have the same zip as last week, even after a blood boost. Tom doesn't think it is possible to hit the marks, but I tell him to be patient, give it time. He feels the doctors have started hinting at the marrow transplant. I am not convinced. I think they are just honestly answering his questions.

Only 20 to 30% really have permanent success with this treatment. They are not necessarily the people with numbers as critical as Riley's. He could be in the minority, though. If not, there is a good match out there. I don't want to rush. Tom said today he felt like time was blowing back his hair. The weeks pass with transfusions each time. Success is no transfusions. We are still down in the gutter for platelets and Red. Platelets need to hold consistently above 15 or 20 to show success. Even then we need to be above 80 for a normal life. Riley is down around 7.

Today he was at 6 platelets. His zits had started to scab. He told the doctor he knew he was getting platelets before the blood was drawn. Red was at 7.9 so we got another unit just to see us to Thursdays again. We don't want another trip to the ER this weekend. I can see peteccia on his legs today. Its the first time since the horrible day over a month ago. I t is not a good sign.

This week is going so fast for a stay-cation vacation. I was glad the neighbors all stayed in town. The boys have had lots of healthy playmates coming and going in the house. Riley even went next door for a change of scenery for a couple hours. His whites are going up due to his blood booster shot every night. 1.9 today. Our goal on whites is 5. We are just not seeing those same kind of results with the reds and platelets.

If we do marrow, they will kill the whites again and we will be back in isolation in the hospital ward again until well after surgery. Not a fun prospect. Riley has the stages of time down. Today he came back to our cubicle after going to the bathroom. He said there was a week two arriving. I asked how he knew. He said the grandparents were there bringing gifts. Week one is the dads, week two is the grandparents, week three is the friends visiting with gifts. That's when you pass the freaked out stage and get into the pattern that will continue indefinitely.

I just keep reminding Tom be patient maybe time will improve those other two numbers. The whites look good.

Meanwhile, my nose started running last night. I tell myself it is allergies, even though I really don't have allergies. I dose myself with Dayquil and benedryl and tons of vitamins and water and juice. Anything to make this go away fast. It is helping, maybe. I wash my hands frequently and try to keep away from Riley. He has a mild runny nose. I have him drink lots of water to flush his system. Hopefully it will just go away. Everything is stressful these days. A cough or sneeze or just a drippy nose is a major concern. Things I used to ignore, now are in the forefront of my life.

Surprisingly I find peace in the clinic. It is what it is. While I am there I can't be cleaning or sorting or telling myself I should be doing those things. Sitting in that cubicle is an escape in itself. Riley and I work on his homework, which he has been neglecting. Tomorrow is a big
math test with the tutor. He tells me he is ready.

He is enjoying researching an Oregon Trail project his teacher assigned. Its not really part of the curriculum but She thought it would be a fun project for him. Gigi stopped by and told him stories about our ancestors. Her family crossed the Oregon trail from Tennessee to St Louis, Missouri to start the trip. She says her grandfather tells of one of his infant sisters rolling out of the wagon, getting lost on the prairie and never seen again. She knew the names of all seven children that made the crossing to the Willamette Valley.They settled in Coos Bay. I tell Riley he could do it using his real family history. I think he will enjoy this project.

The red finally finishes, after the platelets are done first. We wait now, it is after 2:00 pm. We started the day arriving at 10:00 am. Margaret stops by to say hello. My little sister is flying in from New York for her spring break. I am looking forward to seeing her. I am so glad I don't work. I would have been unable to adjust as well to our new demands. I am amazed at how easy I have fallen into this daily routine and crisis avoidance. Stay positive and don't dwell.

ER

It started out as a lovely weekend. We are now officially on spring break. I took the boys to Aurora to the historic pioneer museum. They are starting a study on the Oregon Trail when they get back to school. Riley's teacher wanted us to have some hands on experiences. Gigi gave us a couple pioneer recipe books to borrow. Because of budget cuts all the museums in Oregon City are closed at this time, indefinitely, including the Oregon Trail museum. So I was glad to find the privately funded Aurora Museum was still open.

They had a real wagon on display. It was surprisingly small. The boys were impressed on how small it really was for the whole family. It was also heavy to move, even empty. We also admired the tools on display to build the community. Aurora was a Utopia set up, with everyone sharing for the common good. Because of that foundation, the town prospered, with every one's help. No one person suffered a burden, and everyone contributed.

One of their leaders had died two months before leaving the East for the Oregon Trail. The museum guide shared with us how, rather than leave this beloved member behind, they made a coffin, lined it with copper and pickled the body with whiskey. He had the longest funeral procession in the history of The United States.

One of those small world moments came during a short film when they talked about arriving, after crossing the Oregon Trail. The group first came to Willipa Bay to settle, where my mom's beach house is located. They found it too forested to farm, so they went looking for more appropriate land south of Portland, in the Willamette Valley. They found 18,000 acres for sale with a mill already built. They named the area Aurora. Those hills above Willipa Bay are still forested today.

The boys made a list of what would be necessary to cross the trail and survive. The wagon would hold food and water for everyone and the tools needed to make a new start. The movies make the wagons look bigger than they really are. You really would not be able to sit two abreast in the seat. It was only wide enough for one person sitting. The rest would walk. It would be more like car camping for months.

Tom offered money to the boys for washing his car. Someone had written wash me on the driver's side. The boys had fun spraying the hose and getting wet. The weather was beautiful. Riley came in tired from the activity, but a good tired. he said, though, that he had a small head ache that would come and go, when he watched a lot of TV especially. He thought his eyes might be tired.


The head ache lingered through Sunday. Sunday evening the head aches became more prominent. I called the on call Doctor. We didn't have any oxycodone and it was Sunday night so the pharmacies were closed. I asked if I could give Riley Tylenol as he didn't have a fever. He does not want to go to the ER, having had that experience before. He would rather wait until clinic in the morning if he can. The doctor said that would be fine as long as we checked his temperature before each dose of Tylenol. She also said she would put him on the clinic list to be checked in the morning.

Middle of the night, 3:00 am Riley comes into my room crying. The pain is unbearable. We try more Tylenol but he is beyond that pain threshold. Riley wants to go to the ER. As I dress the mill calls. Tom is on weekend duty and a machine has been down. They want him to come in to work. I wake Trevor and ask if he wants to stay home. He says he wants to go with Riley and me to the ER. For Trevor it is all an interesting adventure, middle of the night excitement. Riley can barely speak through the pain except to tell his brother to be quiet. I have Trevor call the doctor again to let her know we are coming in and to expect us in 20 minutes. It gives Trevor something useful to do.

It is another long drive. It dawns on me I could have gone to a closer ER, Willamette Falls. But we are so used to this trip and the hospital knows Riley's case I don't have to explain it as much. We arrive just before 4:00 am. We are the only action so we are seen right away. Riley's red is at 6.7. Platelets are 19. For us the platelets are a good number, but for the doctors in the ER, they stress. They want to check him for Meningitis and mention that if the headache doesn't recede we should contemplate a brain scan for bleeding in the brain. I tell them these are good numbers. The white is even at 1.6, that is the significant improvement stage.

At first the doctor doesn't want to mask the headache with drugs in case it is a sign of something more serious. He would like to see if the red blood transfusion makes it go away, just to confirm that is the reason. But I know the blood takes too long to arrive. The doctor says 20 to 30 minutes, I read 2 hours into that. I tell the nurse we aren't going to last until the blood arrives consulting with Riley, who is being very stoic now that we are at the hospital, and everything is under control. He wants his oxycodone.

The nurse has to find food so Riley can take his pill. All they have is baby food peach applesauce. It is one very small pill. In desperation, Riley takes the baby food with the pill. 15 minutes after he takes it, the pain is gone. He says now he knows why people like this drug a bit too much.

Trevor has been reading in the corner the whole time. Riley wants to dim the lights and sleep, so Trevor gets the computer up and going, as he can play that in the dark. Riley sleeps on the bed and I curl up on two chairs. I am surprised at how soundly I sleep until the blood arrives at 7:00 am, and the nurses flip the lights back on.


It was a good call on the pain killer. blood delivery always takes longer than they say it will. Red blood takes longer even than platelets in delivery time, to me.

The Red is very viscus. It has to be mixed with saline as it goes in to keep it moving. Infusion takes at least a couple hours. Tom calls for a status. I tell him everything is under control, but he says he will swing by anyway. The infusion is still going when he arrives at 9:30am. It will still be at least another hour plus the wait time afterwards to make sure Riley doesn't have a reaction.


This allows Trevor and me to go fill a new prescription of oxycodone to have at home. We get it in liquid form, which will make it easier for Riley, as he will only take pills with food. I drop Trevor off at home and run a couple of errands. Tom calls my cell a little after noon, they are home. I head home also, so Tom can get back to work. Riley and I sleep. Trevor goes to hang at the neighbors. I put a roast in for dinner so I wont have to do much preparation. It cooks until Tom comes home from work.

Tom is exhausted by the end of the day and goes to bed soon after dinner. He is asleep by 9:00 pm. I send the boys to bed. Thank goodness we didn't go anywhere for vacation.

Dads are better at some things

Everyone is out and gone for spring break but Riley is stuck at home. He has been spoiled rotten over the past few weeks. Today his tutor is coming in the afternoon. I tell Riley it is time to clean up the model parts and make room at the dining room table for his school work. You would think I was torturing him by the way he responds.



What? clean up the model? It can't be touched!!. It wont fit back in the box he tells me. BS. I tell him to make a tray out of the box and carry it all up to his room it is time to do the homework he has blown off for two days. He pouts. He carries one small item upstairs and then stays there in his room, leaving the mess at the table.



I pile all the pieces into the box. They all fit. I call Riley back down to carry it to his room. The audacity, I have touched his model. Melt down, more time in his room refusing to speak, refusing to do his work and prepare for the coming teacher. I contemplate canceling the teacher, but then Riley wins. Wrong word, its not wins exactly, but that he would be sidelined from reality. He will get better and continue on. He needs to take advantage of the teacher and this opportunity.



I also mentally blame this shopping spree and continual reception of presents for the little king. I know its hard not to want to make things better with gifts. But Riley needs to know that there is also a time and place to play with them. Now it is time for school work.



So, rather than losing my temper or yelling at Riley, I call his father. Tom will diplomatically speak to Riley about his future and the importance of his studying. At least I hope he will. All I know is that dang model is in the middle of my dining room table making a mess,and the teacher is coming to work with Riley right in that very spot. Tom bought it for him . I know its a guy thing, I'll let Tom work it out and I will go to my zen place.

Tom calls back. I explain that Riley is having a mini melt down. His teacher is coming, he has homework and does not want to stop working on his model. I ask him to diplomatically speak to Riley. I don't know what he says to the boy, but Riley calmly comes downstairs and begins to work on his homework.

I offer to make the boys a big breakfast of eggs, bacon and pancakes and toast, to let everyone know there are no hard feelings and all is forgiven. They eat it up. Riley does about a half hour of homework and then needs a nap to digest the big meal. No problem, the model is put away in his room and the table is ready for his teacher. He has made an effort on his work. I tell him if he is not awake when the teacher comes I will wake him.

Trevor plays wizards 101. I tell him, he has one semester left to bring his grades up to acceptable levels. If he doesn't do it I am hiring the teacher for him also for the summer. I have finally found someone, I am not going to lose her or the opportunity. If I tried to teach the boys it would be a battle. It would make Tom cranky to come home to conflict every night. Its much better to hire a tutor and have family peace.

Another day

Thursday at the hospital, Tom arrived at 10:00 with Riley. They do not have Riley meeting with the doctor until 2:30. I had planned to come at 11:00 am, but Tom didn't want to delay the pills any longer than necessary. He felt two hours was too long off the schedule.







I went to sign papers at HR Block. I thought it would be a quick sign and go. I should have known better. We could have probably done it ourselves with as much success. Its irritating. I still have more to do . Riley sends me a message that he and his dad have headed to the appointment at the hospital.







I switch cars for the jeep and head to the hospital to join them. They are still in the waiting room when I arrive. Tom is cranky. We were not on the morning schedule. they did this before. It is not a big deal. I know they will see us. Our appointment is not until 2:30 with the doctor. Though he does tend to just show up after we arrive. Around 11:00 am they call Riley's name. I should say they call William's name. That is Riley's first name and what is on the insurance records. Its an on going joke what name they will call him by each week. 50/50 whether they get it right.







Tom asked me last night why I am happy with such horrible numbers. I told him our rule was only one person could stress at a time in our marriage. He was doing plenty of stressing for both of us. Life is what it is. I am happy Riley is alive and breathing and able to run around right now. As far as I am concerned he could be dead without this treatment, what is there not to be happy about, Riley is feeling good and alive.







So there is Tom antsy in the waiting room for almost an hour. He wants to see the numbers so badly. I am in my zen place, waiting on hospital time. Riley loves trying to get under our skin with little comments about our flaws. No one is better at getting under your skin than a teenager with attitude. So, I am in my zen place, while Tom mumbles "this is unacceptable". Hospital time is what it is.







We finally get a room and the Picc is cleaned and blood drawn. But not before the doctor makes his appearance. he also is disappointed the numbers are not back. Since he is the man in charge though within five minutes the numbers are back.







WBC 1.0



Gran .5 (anc)



Platelets 7



RBC 2.79



HGB 7.2







Best numbers since the beginning. Hope grows. The curve up begins. We do need platelets, but we will try to push those reds to the limit. The doctor tells us it is totally up to Riley's tolerance. As long as he can get out of bed and be normal, they will put off the transfusion. He may even push Riley to 5 on HGB. Our hope is that those numbers start to go up and we wont need a transfusion again.





Meanwhile we get platelets. It is a busy day at the clinic. Not as quiet as Thursdays usually are. There are some very sick children today. You can hear a child vomiting behind one curtain. Behind another is a small child crying. In other alcoves are stoeickly silent families. We at least chatter and joke. The nurses give us smiles as they pass.

If this treatment works we should really begin to see an upward trend. Meanwhile spring break is on. We are home for the duration. Riley will have tutoring during his break to make up for lost days. Trevor and I will have to find fun things to do. I am dieing my hair, getting rid of the grey.

Riley is working on another model. Gigi gave him a lego set at the hospital to build. He enjoyed that immensely. On the way home Tom took Riley to the model store he discovered in Oregon City. They had fun choosing a new model together. I went and found size 14 shoes, finally. Riley had taken his shoes off at the hospital and had not wanted to put them back on because they hurt his feet. He ran around in his socks all day. A friend had picked up a pair of shoes but had grabbed 16s not 14s by mistake so they needed to be exchanged. It all forced me to deal with it.

My boys are going stir crazy though. I need some entertainment this week. Any free healthy children would be welcome to come over for play dates or sleep overs. I wish we could go to the beach, but with the mosquitoes and well water to bath in, it is just more than I want to chance right now. This summer as Riley's numbers improve, we can go then.

Rules

Trevor brought home a pile of graded papers. The grades were great so we went to Dennies. Trevor ordered the double cheese burger with onion rings and chicken noodle soup with a bottomless glass of pop. It was just the two of us. Trevor offered to include Riley, but Riley opted to stay home with his dad.

Tom and Riley watch that "70s Show". OK, girlfriend who sent that to me, its not pot that is dangerous and addictive, it's the show itself. Tom thinks he is Red, the father. He has start calling the boys by new nicknames. He is enjoying it way too much. I called bed time for the boys and it was at least 3 more episodes and 11:00 pm before the TV was turned off. Trevor went to bed. He still has school the next day, but I think Tom was enjoying hearing Riley roar with laughter. He didn't want it to stop.

My Dad was addicted to the PG Wodehouse BBC series about Birdie Wooster. Birdie was a wealthy and connected bachelor who's sole purpose in life was to date beautiful women and never get married. His butler would cover for him as needed. I think we will get that series off Netflicks also. Once we finish seasons 1 through 8 of That 70's show. Unless the boys want to start over at the beginning season, again. Season one is still my personal favorite.

Riley has gotten into the study routine. His teacher is figuring him out and Riley is enjoying the sessions. She is also teaching him some good habits. At school, teachers are sometimes more forgiving about mistakes. They have so many students to grade that they often overlook sloppy writing. Now Riley has a teacher whose sole purpose is to teach just him. Her expectations are higher as a result. Riley's math papers are looking cleaner and tidier, with the problem rewritten and work shown clearly.

Already I can see this tutoring will be beneficial to Riley. The teacher also said she would be willing to work through the summer, privately, if we would like to continue. I am thinking of grabbing her for Trevor also this summer. She has a fountain of patience and a peaceful calm personality. I even vacuumed this morning to give her a good impression when she arrived.
White carpet is a pain.

Riley had diarea last night. Tom was all concerned. He thought I should call the doctor and see if everything was all right. I told him not to worry. Riley had eaten a full half of a delicious blueberry pie, himself, personally. With that many berries a little diarea was to be expected. The crust was Divine too. A friend had dropped off the dessert and a dinner just for Tom since we hadn't saved him any the other night. I am grateful it was labeled "Just for Tom". It would not have made it to him otherwise. Tom licked the bowl clean. The boys sat and watched as the food disappeared. Luckily Trevor had eaten his big Dennies dinner, but even after half a pie, Riley eyed his father's dinner inquiringly.

We are supposed to be fed and ready when the tutor arrives, so Riley eats at 11:00. He is hungry again by 1:00 and usually getting another meal ready as the doorbell rings. The tutor has been totally understanding as Riley eats his way through the first part of the session. I serve her tea, and yesterday she got a small slice of the blueberry pie before she left. That was the start of the pie's demise. Its totally gone now.

Riley is gaining weight, but he was so skinny to begin with that he carries it well on his slender frame. He lost some weight in the hospital so it is good to see him put a little on. Besides, next week those cravings should fade with the end of the steroids. If the food keeps coming though, who knows. He may have just been skinny because I can burn cheese sandwiches.

Graphing

This weekend Riley is weened off his steroids. Every Sunday we have been cutting back on his Prednizone dose. We are down to just 10 ml Gram or 1 pill. We started at 35. This is the immune suppressant used to prevent Riley from having seizures or reactions from the horse drug they used to shock his system. We will have been home 3 weeks.



Once the prednizone stops we are hopeful the white cells will start to grow. Tom charted all the numbers last night. He put normal on the graph and then graphed Riley's number. Sh#$$@. After I looked at the chart I told Tom not to dwell. He said he had waited until now to do the graphs so that we could watch the improvement happen. I pray he is right.



The charts look something like a geology cut away. The top line being the surface of the earth and our goal. Then way down at the bottom of the page are all these these little dots linked by a line that looks something like a roller coaster. Its a long way to the surface, even at the tops of the curve. Somehow we have to get that line of dots to start going up. Its like bringing diamonds to the surface.



I was asked about supplements. I found there are too many dangerous side effect we don't know about. Vitamin K is a blood thinner. Vitamin A is dangerous. Because Red transfusions cause toxic levels of iron to build up and stress the liver, any multi vitamin with Iron is dangerous. The list goes on as you start to look at each individual vitamin, until you just throw up your hands and say OK no supplements. Besides its new blood each week and you just don't know what is already in it.



Riley is supposed to have only pealed fruits or well washed. He is to have boiled vegetables as a precaution for contaminates. So we try and encourage healthy eating habits. Eating right now is not a problem. He eats everything. A friend sent us cookies. I never got to see them because the boys opened the box and they were gone, all ten within a few minutes. She sent me pictures of them because she had decorated them in cougar colors with the boy's old football numbers on them. She wanted my thoughts on them for her new business she is opening making custom cookies. I had to tell her I never got to see them. They were that good, so the boys tell me.



Last night another friend dropped off dinner for tonight. Well, it didn't last until tonight. We had already had dinner when she came. Once she left, Riley dug into that stew as if I had not fed him all day. We have barely any left for Tom to eat. There was plenty to begin with, but you would think I starve my boys the way they are responding to all these meals I didn't cook. I did try the stew myself and it was good. Well, I just tell Tom if I was a good cook I'd be really fat, so look at it as a silver lining.

Quick update

No news is good news. The police found nothing in the end in the neighbor's yard. It truly is nice knowing your neighbor is not a danger to the community. I picked up Riley's prescription and it was finally a month's worth of pills. The co pay was the same $15. Much improved over the 5 days for the same amount.

We are going to bribe Riley now. the pain killer cream he uses is not covered by insurance. It is available over the counter. He puts it on before he gives himself a shot to numb the area. The tube costs $30. Riley has been very generous with his usage. Tom offered to pay Riley $30 if he will take his shots without the numbing cream. Riley was not apposed to the idea. I would rather give Riley the money than spend it on the cream every month. We will see how it goes.

Riley is irritated that we ask him every time he uses the bathroom "How was your poop?". We want to make sure he is not constipated or have diarea. We are looking for just right, not too soft , not too firm. After our scare with the red pee, he is accommodating but irritated that we ask. Red food coloring is also now discouraged. He had a scare with the color dies from a cake with red icing. We can handle green or blue, because they are obvious and safe, but red tends to fry the nerves a little. I don't think I will be giving Riley beets any time soon either. Not that he eats them anyway, but why stress oneself unnecessarily.

My peach tree has some lovely blooms coming out. The cats and dog I have had to flea treate twice recently. The dog's hair gets shorter by the day. Being home everyday with Riley the clean house is slipping. The bionicles are drifting out of the game room into the living room. Life seems so normal, it almost feels like summer when the boys are home all the time.

Spring break is coming. I was thinking about going to the coast. but I think it is still too soon. Its a long way from Dornbechers and Riley may look good and act good, but his numbers are still rock bottom. It is nice, though, having goals; May first and WBC at 5. This is not an unattainable goal, hopefully.

presents

Riley doesn't want to see anything sad these days. Only happy funny comedies. As a result one of our old friends sent a package to us. Its a DVD set of "That 70's Show". I can hear the children shrieking with glee, frequently. They have hours and hours of episodes of campie sitcom to watch. Riley is loving it. He can't get enough of it.

Last night Trevor wanted to watch "The boy in the striped pajamas", a WWII movie about a child who's father runs a crematorium. Riley doesn't last through the movie. He leaves. Trevor and I watch. Trevor is having a survivor visit school to talk about WWII. I want to make sure Trevor understands the war. There a many wonderful films we can watch. I figure that movies are better than my lecturing.

Last week I finally caved in and bought Netflicks. Not for the DVD's so much as the streaming to the computer. I figure we can watch movies while we wait all day at the hospital. Those G movies that we would drop into and miss most of over the course of the day were driving me crazy. We would be interrupted constantly. Now we can stop and start our own, and they don't have to be Disney. There are some great instant play choices and we can get some old classics. My first pick to be mailed was Fiddler on the Roof. Trevor used to play the viola, so I thought he might enjoy it, plus the historic perspective made me feel that it wasn't waisted time.

Meanwhile, I hate tearing Riley away from That 70's show, he laughs uproariously. The show reminds me of the stories Tom tells of his teen years. We try to pick which character represents each of us in the show. I definately relate to the mom. I have to admit it is funny and entertaining, in a painful sort of way.

I do love the streaming and choices of movies and documentaries that Netflicks provides. Tom can't believe I like watching movies on my computer when we have all these giant HDTVs all over the house. There is something to be said for convenience, though. I don't have to fight for the remote or choice of program, and no commercials.

Neighborhood distractions.

Yesterday I took the boys to the store. I thought the pharmacy would be open past 6:00pm on a Sunday, silly me. On the way out on to our cross street to the store, I noticed a whole lot of police cars and police in yellow jackets, police in uniforms and undercover officers. I stopped to look, but then they turned to look at me in my car, so I drove on, minding my own business. I figured it had to do with a particular family in our neighborhood. They have a teenage boy who has gone down the wrong path, so to speak. We see police often at their home, just not in these numbers.

Some of the cars were still there an hour later when I came back. The evening went on without incident. I was getting the boys ready for bed and the phone rang at 10:00 pm. A little late, but I do have a couple friends that tend to call when they want or need to talk. This call was my neighbor. That worried me. I think crisis, accident. She asks if she can come over. She needs to share something she heard. Absolutely, I can hear the stress in her voice. Its after dark this late so I turn on the porch light and go out to greet her. I see her husband watching from his doorway, as if to make sure she gets to my door safely. Its just across the drive. I am thinking what is up?



She wants to sit in the front room. No distractions from children or TV. I love my front parlor just for that reason. Riley is all curiosity, but I send him away telling him if its important enough I will share later. I can tell my neighbor is uncertain if she should share in front of the children. Tom calls down from above. Who would be coming by this late at night, does he need to get his gun, (his sense of humor). Surprisingly, my neighbor says maybe. That's when I call up to him and say maybe he should come down and hear this conversation also, with my neighbors permission. He grabs some pants and comes to join us.



The police have been by to ask questions of my neighbor. A woman walking her dog in the neighborhood had her dog react strangely to one of the other neighborhood back yards. He was a trained cadaver dog. The reaction was that he smelled something he shouldn't be smelling. The woman called the police. They brought their own cadaver dog and he also had reacted to the same spot. Thus the police action. They wanted information on the particular house and owners.



I had been told two years ago, the husband had divorced the wife and used the undocumented card to keep his children and send his wife back to Mexico. She was a very nice neighbor, but spoke little English. I paid no more attention after that other then waving at the children when passing in my car.



Now my neighbor, sitting in my parlor, is telling me that the police say this woman may not have made it to Mexico. Potentially, she may be berried in her own backyard. The police will be watching the house over night. My neighbor tells Tom and me the police plan to dig. We share what we know with each other about the family, then my neighbor heads home in the dark. I lock my front door, then I check the locks on all the doors and windows.



The thought of a police officer patrolling the street looking for a lurking felon who may be trying to move the body of his murdered wife, does not make me feel any more secure. All speculation of course, we don't even know if there is a body. I am Louise Cratchet, the neighbor in Bewitched, who peaks through her curtains trying to figure out what the neighbors are doing.



I am sure if they are going to take soil samples or dig, they will need warrants, and some proof other than a dog scent. So, today I keep peeking out my little bathroom window to see if there is any action going in that distant backyard. Its our own episode of Law and Order. It may turn out to be nothing.



Tom and I had a similar incident when we lived out in the country. Driving home one night in the dark, I was blockaded from my neighborhood by police action. Tom just missed the lockdown so he made it home. A neighbor came over to our house to tell Tom the news. A police officer, delivering an arrest warrent, was attacked and shots were fired. The officer had shown up at our neighbor's house covered in blood on his face and clothes, to warn us all of the suspect in our woods. The fleeing suspect had taken off with the officer's gun and run into the woods around our neigborhood. There was a man hunt on.

Tom calls me on my cell where I wait on the road. He says he has the chair facing the door and is watching the woods. I tell him to be careful not to get shot by the police by doing something silly. The police at the blockade finally wave me through. I pass another police car on our private drive. I am relieved to be home. We lock the house up well that night.



The next day on the news, we hear the suspect was apprehended. He had run down to the river nearby, and swum down stream, evading capture. He showed up at his known girlfriend's house for dry clothes and was captured there. The incident was over. Everyone was safe.



I am hopeful this turns out to be nothing. I like the children. The dad has done yard work for us. I have had coffee with his maybe missing ex wife. It is hard for me to believe something that heinous could have happened. So I peak out my curtains periodically, so far nothing, that's good news to me.

Insurance bill

Tom asked that I not put in writing about the amount of our last bill. He said you never know who might come after us for the difference. I told him I would compromise. I'll compromise and wont tell the whole amount. But I have to say that Riley is alive and getting well. He acts fine. You would not know that he is a sick child to see him. I remind Tom that he has other people's blood and platelets coursing through his body making him look healthy. His cheeks have color. He has energy. Riley even said he has come up with a cure for teen age acne, a once a week injection of platelets.



The bill for the hospital stay came. The pharmacy charge alone was $50,000. The ATG is a young drug, still under patent restrictions. Ten years ago there was no medicinal treatment for Riley's condition. A new drug gets a 14 year protection. Around the end of that time the drug is adjusted with improvements to get another 14 years hopefully. Research is expensive and those costs need to be recouped. Knockoffs or generics start to make their appearance. Insurance companies demand their clients get the cheaper drug. It may not be as good, but its cheaper. Wouldn't it be nice to pick an insurance that allows you or your doctor to decide what brand you should take.



We stayed in the hospital 10 days. Riley was injected for 6 days with this horse serum, along with the shots of blood booster and cyclosporine. He was also treated with Benedryl for hives and antibiotics to prevent a cold. he received a special shot that prevent Pneumonia by drying out the lungs.



Due to his lack of white cells, pneumonia is still a concern and he may get that shot again. He would not show symptoms just a full blown case within hours of contracting a cold. This particular shot prevents moisture in the lungs.



It is amazing how these drugs are so targeted to the particular cell or system of the body. The cost to me seems so small compared to the life saving good they do. Again, I am grateful for insurance. I just think its sad that they are able to negotiate at the other end. The hospital will only see a fraction of what they charged, what their costs were to take care of Riley. Insurance and the hospital will settle for a fraction of the cost. Its an insiders club. We are lucky to be a part of it, or that whole bill would be our responsibility rather than just a small fraction.



I think about how much we pay in premiums, and how much the company pays the difference. When we were on Cobra it was just under $1000 a month for a a family of four. Kaiser offered us a private insurance for about the same amount. I want to be able to buy the insurance I want. I loved Kaiser when we had it. I liked the HMO I had when Riley was born. That HMO was tied to a particular hospital back then. I do like this insurance, but it would be nice to check out other options. If people bought private insurance, then the lack of job security would not be such an issue. Riley now has a pre existing condition, much like cancer. Does this make him un-insurable as an independent adult, for this condition, once he moves out? He wont be able to role out his insurance from his father's like he will his auto coverage.



It just makes me think about the possibilities and limitations our existing system has. I can see the argument for having insurance through your company. They make sure you are covered in case of accident at work. But workman's comp covers that. There is negotiating power in numbers, but insurance companies usually dictate the premium they will offer. You can join a credit union for $5 and be part of that negotiating pool. I just think that there are a lot of games being played, and we are lucky to be on the inside and not left out in the cold.



I have never understood why insurance has to be tied to work. They don't pay my house insurance or my car insurance. We should be able to go out and shop our own policy. Do you want preventative coverage? Do you like going to the doctor all the time? or are you more the type that waits until your sick and then goes in. Do you have your teeth cleaned every six months or do you only go in when you have a tooth ache. I would like to go in every couple months for cleanings and because of insurance I only go every six months. Why am I trained that way? I could just pay cash for a cleaning, but I don't because insurance has me trained to a six month schedule.



When we were without dental insurance a couple years ago, I did pay $50 cash and take the children and myself to the dentist. The dentist had no problem with the arraignment. I just had to remind him not to do the extras, no x-rays. I paid an extra $40 for fluoride for the boys. When we had insurance, he was billing around $160 for a visit. I am guessing insurance settled for less, but not as less as $50 in cash. Perhaps the dentist was taking pity on us, and making sure we had dental care, or perhaps cash is king. It removed all the paperwork of insurance. It was immediate, not three months out in paying. Like an empty hotel room when you negotiate down the price, they would rather cover costs than have any empty room. The market came into play the way it is supposed to.



It seems strange that insurance and the hospital will probably settle for less than 25%. When a family without insurance comes in, there is no negotiating power, no way out. The doctors will know there is no insurance and may hold off treatment until other arrangements are made. Had it been a case like Riley's, the child would be dead. Our doctor commented that we were a record speed case from diagnosis to treatment due to the response of our insurance company. Tom made a phone call and his work smoothed the way with the insurance. We received immediate care, no questions asked because we had good insurance and a good employer.

The insurance does have a ceiling though. So, this week we are going to look into an umbrella policy. I don't know if we will get it yet, but we would like to know how much it would be. A policy that kicks in only after our regular insurance is exhausted. My dad had one. He never used it, but it was there just in case. That is what insurance is, a "just in case" policy. No one plans on having an accident or getting sick. You can't help it when it happens. You are playing a game of chance if you don't have insurance.

Enthusiastic student

Its Friday. Riley has to look forward to another long day at home. Riley hasn't taken a bath in a few days so as an activity we wrap his arm in saran wrap and send him off to the well needed showers. He comes back in clean clothes and sweet smelling.



I tell him if he gets some thank you cards written, I will take him out to the store. He writes a couple. He also goes on his computer to make up a nice insert for the cards, then loses interest. The door bell rings. Thank goodness for elementary school in service days. Its grade day, so no school for our neighbor boy. He is available to play. We don't need to go out now.

The boys play for a while, then the door bell rings again. It's Riley's tutor. She is available to teach. You have never seen such an enthusiastic student. Riley leaps off the couch and turns off the TV. No whining, no complaining, he gleefully gets his pencils and serves his teacher tea as they settle at the dining room table for an afternoon of study. His teacher even comments how wonderful it is to be received with such enthusiasm from a student. They get right to work. Today the topic is Algebra 1.

We have not waisted the other days the teacher could not come. We have learned about the architecture of the Coliseum in Rome, and how the Pyramid of Gaza was built and why, through a video the teacher left earlier in the week. I asked Riley if he could find something to learn each day he is home. Some small piece of history or fact that he could then tell his father and me at the end of the day, he would not feel the day was waisted or lost from education. As a result he opened a book on Lewis and Clark. I set up some questions to ask about them and Riley went to work reading to find the answers.

So, today he is excited to be learning. He is a sponge soaking up knowledge. The topic is math and everyone is happy.

Doctor news

Gigi met us at the hospital this morning. I had something she has been wanting me to bring for ages. I finally got it delivered. She stayed for the doctors visit. The surgical nurses came and cleaned the picc, replacing the bandages with fresh. The nurse drew blood tests and quickly returned with the results. WBC at 0.7 which is good since the lows were clear down to .3. The goal is 5.0 , but that is a good number considering everything. Riley is not totally helpless.



Hgb is 8. Rbc is, 3.1 below range but barely 3.45 is low end. Gran is .2. Platelets are at 27, I am thrilled considering the expiration date on Monday. We think we will get out quickly today, without a transfusion for the weekend. We wait for the doctor. Its a while. When he comes he says he likes the numbers also. he wants us to go to once a week visits for Thursdays. He does his clinics on Thursdays. He says we need a platelet boost to carry us another week until next Thursday.



I ask about the reds holding that long. He says he would like to go as low as 6.5. When reds are given, sometimes the bone marrow reads that it has enough and stops producing again. He wants to push the marrow to produce, if Riley can handle the low reds. Watch for the signs and bring him in as needed. Otherwise we are due back next Thursday. With fewer transfusions it improves the case if things change in the future.



I also ask after our prescription. the doctor has given us 4 refills, but insurance wont let us pick them up until each one is finished. They are only 5 day doses. It has been completely irritating to have to go to the pharmacy over and over again. I tell the doctor I need 480 pills per prescription not 90. Riley with his need to have small pills takes 8 25 ml each time, when a normal prescription dose would be 4 100 ml. The doctor orders 1000 25 ml pills for us for our next refill. That should solve our problem.



So we wait for the platelets. They take hours to arrive. Riley is hungry and not for hospital food. I do the trek down to the ninth floor then across to the other hospital to a cafe that does real fried food. Riley is thrilled when I bring back a tray with pop, fries, and a cheese burger. All real, no fake, no bake. He shares some of the burger with me but eats everything else. The platelets finally arrive.



We hang out as the platelets go in, then the flush, then the post wait. We can leave at 2:45, missing rush hour traffic. We will be home in time for Trevor.




The teacher was sick this week and then had a family emergency, but she has dropped off work for Riley. Tomorrow I drop off his high school wish list. I am told to check parent assist in August for an early view of his schedule.

Whoops

I have to laugh. The joy of stirring up controversy. I get that from my Paternal Grandmother. She was a piece of work. She put my dad in boarding school as a small child and left him there for 12 years, so she could go off into the world and do her thing. I wrote about an idyllic childhood. Well, you are not going to get me to expose all the skeletons in the family closet. Lets just say there are advantages to having to wear thick rose tinted glasses. You can take a lemon and be all sour, or add a Little sugar and make a delightful glass of lemonade.

I do like a good Margarita. Tom met me at Talacqui Paci's in down town Seattle. I had been told by my then roommates that an old friend was coming to town for his 30th birthday and they would like me to show him around town. We lived on Frat row by the University of Washington. That weekend I was on crutches for a sprained ankle. Tom and I limped that hilly campus. It was the first time I had ever been on campus in the 3 years of living in the area.

My old roommate was working on her Masters and PHD, but I had never gone. Looking back I am sure Tom could have cared less about the UW, especially knowing now where his heart really lies, Go Beavs.

But what really impressed me was when he allowed himself to be blindfolded and lay his head backwards on the bar of that Mexican restaurant, while the bartender poured an unknown fluid down his throat. It was only tapioca pudding, but he didn't know that, all to impress a girl. Its the way they celebrate birthdays at this particular spot. He knew all my friends, and was such a gentleman. He held the door for me and my crutches. When we went out for Italian on another occasion, he asked around the table if anyone minded if he ordered veal. All the women melted, he was so sensitive. It was a great first impression. When he turns those brown eyes with the little wrinkles in the corners on you full, they melt the harshest facade.

It was his perseverance though that was most impressive. He would drive from Eugene to Seattle on the weekends. We weren't even officially going out. He was just coming up to visit his friends, my housemates. For six months he did that drive. Finally at Christmas, my step dad said "No guy in his right mind drives all the way to Seattle to see old buddies every weekend, Honey. " Oh.

So, we officially started dating in January. The next October, we and many of our friends were planning a trip to Cozumel. He had been planning to propose to me romantically on the beach. But I was four hours late meeting him at a restaurant in Portland. We were coming in from Seattle to Portland to fly out. My ride made a few detours. This was all before cell phones. Tom held the table at Pazzos restaurant during a busy Friday night for hours. He was just leaving when we pulled up. He was not in the best of moods. We all trooped back into the restaurant and spent the evening putting him in a better mood.

He proposed to me driving back to the Marriot hotel that night. Well, it was kind of a proposal. " If I asked you to marry me would you say Yes?" I responded, "If you were asking me, I would probably say yes." Any man with that much tolerance and patience and that cute is a keeper. He has staying power for the long haul. Thick or thin, sickness and health, rich or poor. The whole real deal.


The next day we caught the plane to Cozumel. So, we always say he proposed on the trip to Cozumel. Sounds so much more romantic than at a stop light in down town Portland two sheets to the wind. He is still as cute now with those puppy dog eyes as he was at 30. I have given him a whole head of grey hair and a few more wrinkles, but he is still such a gentleman holding the door for me, as long as I wear nylons and a skirt.

That was good memories!!!

Family Tree

I had someone ask me about my family last night. I was at Trevor's concert, which by the way was as awe inspiring as usual. To see these young students dedicate the time and effort and work in unity to create music is truly amazing. I give full credit to the music teacher. She is an amazing woman. I can't imagine how she does it. Her classes are twice as big as any other teacher in the school with up to 60 in each band level and 80 in choir. She has to publicly perform at least twice a year with her students. Forget the OAKs testing, have tests given with an audience of family present to witness. That creates incredible pressure to do well, stay focused, and work. I am hopeful Trevor continues with percussion. He was concentrating so hard, his cheeks were flushed. You could see them glow from the audience. He must have been holding his breath.

After the event there were cookies and lemonade. Donation jars abounded. I hope people donated. Trevor had pride in his performances, that is important for his self esteem, since he struggles with his other classes. He needs that moment to glow in the light of success occasionally. Riley, with his ease of getting good grades, is a hard act to follow. I remember my older sister in school, popular and outgoing. Everyone knew who she was. She was a hard act to follow. Its easier not to try. So, this was Trevor's moment, and I was proud of him for trying.

But to the confusion of my dads in my life. I have been blessed with two sets of parents. My mom and dad divorced when I was 1. They were not suited well as partners. Both were very temperamental when push came to shove. We had been living in Louisville, Kentucky where my dad's family, his cousins and grandparents resided. Kentucky did not suite my mom's life style. They managed an apartment complex for my dad's grand parents, while my dad also partnered in a law practice with his uncle.

My mom told me just this year, after my dad died, that he won his first case in Louisville. He defended a black woman for assaulting a police officer with a knife. This was in the middle of the civil rights movement, 1964, in Louisville, Kentucky, the south. An impressive first win. The story goes that the police officer had approached the woman from behind after dark, and not identified himself. She had been frightened, and unable to see who it was, defended herself.

My mom was a Portland, Oregon woman to her roots, old Portland, when Caitlin was in Northwest, and debutantes still wore white ball gowns and gloves. I can imagine the culture shock she had, adjusting to the hot, humid, and ugly side of the south. She came back to Oregon. My dad followed his children back to Oregon also. But the marriage was over. Mom met and married my step dad when I was three. He loved the idea of a ready made family. All his friends had children already and my sister and I were adorable at the age of three and six, frilly skirts and all. I know I was a total princess, and still am in some respects.

My Dad and my Step Dad knew each other. They had the privilege of being in that small group of men that attended Columbia Prep growing up. The school was tucked into the West Hills. It was a feeder for Jesuit. It is now an expensive housing development. They had the same friends and ran in some of the same circles. I would like to think that my dad liked my mom's second choice in husband for raising his children. The result was that there was no animosity between my parents and we all often partied together and at other friends homes.

My Dad met my Step Mom at Timberline Lodge. He was a great skier and liked those individual sports. Margaret had just come out of the peace corp after five years teaching in Morocco. She was beautiful, tall and blond. She had read a book on how to meet men. On the advice of the book she went to hang out where outdoorsy athletic men might hang out. The type of man she wanted to meet. She didn't ski. She sat by the gigantic fire at Timberline. This is the old lodge, romance oozes out of the stones. Dad never looked back once he saw her. He said she was his soul mate, even after they ended up divorced many years later.

Margaret was an artist through and through. We ate healthy, and made doll clothes sitting on her lap at the sewing machine. She loved having two ready made daughters as much as my Step Dad did when he married my mom. She would make us hand embroidered skirts and beautiful dresses. She made us dolls the same size we were at the time, so they could wear our clothes. She was a great step mom.

But both my steps wanted to have a child of their own blood also. Thus my sister and I added to our family with my little brother when I was five, and my little sister when I was 8. My brother being the only boy, was a joy to my step dad and my real dad. My dad would include my little brother in all our activities. When he came to pick up my sister and me, if my brother was available he came too. My brother is a naturally talented athlete, so my dad found it a pleasure to include him when he could. Being the only boy made him pretty special.

My little sister loved it when her big sisters came to stay. Otherwise she said she felt like a lonely only child. My step mom would have had more but my dad felt he had enough with three daughters and an ex wife. We would share our summers between the two households. It also helped that everyone lived within a mile of each other on the same windy, long, west hills road. My big sister and I fought, so to make it a more pleasant experience for everyone and give us each quality time, we would go for our stays on separate weeks. It was lovely. I got to be big sister for a change, and my little sister was a joy to play with.

All but the health food was wonderful. My mom was a great cook of traditional foods. She would take cooking classes and baking classes. My favorite was the cake decorating class which lasted months. My step mom was into healthy foods without added sugars. I loved the arts and crafts, but I would bike down the street to my mom's home to sneak food when I could. I may not have eaten my vegetables or the weird stuff at home, but the rest was great. Occasionally mom would slip in liver or tongue because she liked to cook and experiment. But with the lack of success with the family, she didn't do it often. The end result was having four parents raise us. I felt it was successful. All of us went to college and graduated. My mom would say the product of her life's work was the success of her children to be contributing members of society. None of us were failures. No one got lost in drugs or alcohol.

All my parents had different styles. My Dad was all about books and education. My mom was the disciplinarian. She ruled the roost. My step dad would be quietly disappointed, which was probably the most painful. My step mom talked to us as equals. She was great for advice and never judged. From outside the family it was confusing to keep track, but there was a lot of love going round. I wish more families of divorces could be as equitable and sharing.

My dad, though, was a man very set in his ways. After my little sister left for college. He and my step mom separated and later divorced. After all that time in our lives, we still look at our step mom as part of our parent unit. She is a dear, and has an adorable boy friend. It all adds to the family, not detracts. Life is never boring.

So, Riley is the next generation. When we were discussing family medical history with the doctors, Riley said he knew all about mom's family, it was pretty simple. My side had more of the medical issues. But daddy's family is weird and complicated. I had to laugh. Sorry about the bias. I don't think there is a "normal" family out there. There will always be secrets in the closet, or undercurrents of issues.

I just feel blessed that I had four wonderful parents and my children had 6 grandparents in the beginning. We are back to four with the death of my dad and my father-in-law. But the boys knew and remember them in their lives, so they live on in memory.

High school

I am again grateful to my friends for another meal. Last night someone dropped off a salad for tonight. In the process she reminded me that tonight is the band concert. Trevor hadn't said a word since I signed the permission slip weeks ago. I had forgotten all about it. It is huge for his grade. Originally I had had my mom on to back me in case we were in the hospital or something. But Knock on wood, no crisis, I can take him myself. I wear ear plugs. They really aren't bad, but it is always so loud, I just like to tone it down a tad. It will be fun to be out for a while. Mom had something she wanted to go to, so she was happy to be off the hook in taking Trevor.

this morning I stopped at H&R Block to drop off my Dad's taxes. With luck everything will be done in a week or less. Since I was in the neighborhood, I swung by the high school and met Riley's councilor for next year. I was really pleased in talking to her. Hopefully Riley will be able to attend classes in the fall. The Picc may still be in and his numbers somewhat low, preventing him from doing PE. but everything else should be OK.

I just wanted her to meet me and get a heads up that Riley would be coming. She also appreciated knowing since he is no longer officially in school, he wouldn't be in the computer and will need to be manually entered. I wanted to make sure his class selections were available, since I know the advanced classes tend to fill up quickly. I didn't want to miss any window of time.

The councilor provided me with the form all the eighth graders got yesterday in a presentation. When I got home Riley and I sat down for a good hour and a half, going over the requirements and electives. There were a lot of electives. Each trimester there is an opportunity to take a class of interest as apposed to a required class. Riley was able to find quite a few he liked, and quite a few he did not like.

Sadly, he has decided to drop music. He signed up for a bunch of engineering and technology classes. There are career paths that help direct choices of electives also. He was disappointed there was not a class on Aeronautics and flying. They did have some great alternative choices though.

We have been told that Spanish usually fills up with upper class men, so its unlikely that a freshman will get ever in. We put down Spanish in hopes of increasing our chances of getting a class Riley does want to take. Not that getting Spanish is a bad thing freshman year, Its a requirement for college, but not high school graduation. But I figured we could try and be a little sneaky by requesting it as an alternate. Riley will be more likely to get one of his other classes he wants more. I hope he doesn't get too mad at me if he ends up in Spanish. We had it as our last choice. We were having a hard time picking that last elective and he had two spaces left. Spanish just fit. He was supposed to pick six electives and then 6 alternatives.

Music and Theater went by the wayside quickly. Agriculture (dirt issues) and Physical Ed also were thrown out. He didn't want art much. He couldn't do construction with his Picc. It really became pretty easy in the end to pick. We made a list of possibles, then numbered them by order of favorites and wrote them in. He even chose math oriented physical chemistry over biology. Now that all gets plugged into a computer and randomly spit out into class schedules, hopefully the way Riley wants it. Its funny, next year Trevor will be the exact opposite.

I am getting pretty excited about high school now. It may be just having Riley underfoot constantly right now that makes me so excited. Two months ago I was stressing his starting high school next fall. Now I am thrilled at the prospect. I think Riley is feeling the same. This isolation may even make him more gregarious. A friend dropped by with the other half of dinner for tonight. Rather than disappearing like a normal teen, he hangs out with us and chats. He even walks her to the door with me as she leaves, talking the whole time.

Again, I am grateful for a good meal. Last night I showed Riley how to make fried rice with Beef and onions. The beef and onions came out well, but the fried rice tasted like someone had washed the pan in comet. I had, trying to give it a good clean. It did sparkle, but I had to throw out the rice. Now that Riley is eating, I have to figure out new portions for everyone, or Tom goes hungry with his share. Thankfully the dishes friends have been bringing are so delicious the family is content to overlook my foibles

OOPs

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.

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.

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.

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.