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.