I figure by picking Riley up directly from school I can buy some extra time and not worry about the commute. I even anticipate Tom calling and requesting I bring his computer and grab it before I leave the house. It is my day off so I run lots of errands in the morning. I get a spiral ham which Riley wants for his birthday. He also said and wrote on his birthday list that he needed pants. I swing by the thrift store first to find the deals. They are having a half off books sale. The books are already under two dollars. I find a whole lot of classics like Animal Farm by George Orwell and Centennial by James Mitchener, Call of the Wild by Jack London (we already have a copy, but it is a great book), The Jungle book by Rudyard Kipling, Charles Dickens' Oliver Twist. I buy about 15 books, each one is less than a dollar . All are great reads, books I liked or always intended to read myself. I find a couple silk Hawaiian shirts for $4 each.
After that haul, I feel I can fill in with the more expensive gifts without breaking the bank. I head to Fred Meyer to buy food and more pants with real tags on them. I get home in time to unload the car and put everything away, then head to the high school where I wait for the bell to release the students.
A police car passes me twice, checking to see if I am safe to be parked out front of the school. It makes me feel good about the safety of the school. I wonder if he ran my plates. I wait. The buses come and load up. They leave. I begin to wonder if Riley forgot and got on the bus. I start to pull out after circling the parking lot once to make sure I didn't miss him. I spot him right before I am to turn onto the road and follow the buses home.
He had forgotten and got on the bus, but remembered before the buses took off. What it did do was eat up some of my spare time. He then asks if we can swing by the house for his computer. He has an assignment due he wants to work on. Not knowing quite what to expect at the appointment I agree to swing back by the house. Eating up more of my spare time.
I have not had a late appointment before with the doctor. I don't know if he will be on time or have an emergency that might delay him. Having the computer will be a good idea all around. When we get to the house Riley wants to use the bathroom, a little more delay. The drive takes a good 25 minutes at least. Riley doesn't like using the bathrooms at school, so I know he really needs to now. Its a good thing I planned that extra half hour into our commute.
By the time Riley gets back in the car, Trevor is coming up the driveway from the bus stop. The boys normally ride the same bus. He sees us and smiles, laughing that he beat us home before we even left for the hospital.
Now there can be no delays. Traffic is good on the freeway and we arrive at the hospital at 3:45. Time enough to make our 4:00pm blood draw, but not early as I had hoped. Tom texts us. He is also at the hospital. He meets us at the lab. Riley goes in to the lab and comes out quickly. The nurses are good and efficient in the lab.
There had been a line at Starbucks in the lobby when we arrived. I told Riley we could get something after the blood draw. I wanted to make sure we had time before waiting in line. Tom heads upstairs to check in with the clinic. Riley and I head down to the lobby for our treat. The line is short. Only two people in front of us. It still takes 10 minutes though. Starbucks is an experience place. I explain to Riley it is a little like going to the symphony. You can't speed up the process, that would take away from the whole experience. It is a leisurely treat. He makes the comment that it shouldn't be leisurely if you are after caffeine.
He orders a vanilla mocha decaf. I order a vanilla streamer. We take our drinks upstairs where Tom is waiting. The TV is off in the waiting room. Tom comments on the fact. I point out that at this time of day they probably don't want you lingering watching a movie to the end. They want you to head home.
Riley's name is called and we go through the security doors to the check in room where he is weighed, 125 pounds still. His height is measured, five feet eight inches. He is officially barely taller than me. Blood pressure is good. We toss our cups in the garbage and head to the room where the doctor will examine Riley. He comes in shortly with a new doctor.
He asks if we will tell our story to this new doctor as he will be following our case for a while. I ask if this new doctor is going to specialize in this area. He says he is considering it. We give a synopsis of the last year, how Riley spotted the rash on his legs, then the bruise on his hip that he couldn't tell where it came from, and the sore in Riley's mouth. How we took him to the clinic at home and the doctor at the clinic recognized the symptoms of bone marrow failure almost immediately from the peticia. How we were told to go to Dornbechers the next day. More blood draws and the aspiration of bone marrow confirming diagnosis. How Trevor was not a match. Riley started receiving platelet transfusions. How Riley got sick the next week with a fever which landed us back in the ER and the opportunity to begin treatment immediately. Once treatment started there was no going back even though just a few days into treatment multiple donor matches were found. Now here we are almost nine months later, still in a wait and see mode.
Tom wants to start weaning Riley off the meds. He just wants to get Riley well. The doctor says not yet. Studies show too soon and the chances of relapse are higher. He wants Riley to go a year on the immune suppressants. He says February 17, the exact anniversary date of the beginning of Riley's treatment. The day just happens to be a Thursday this year.
Finally the labs come back. Platelets are 123,000. The doctor thinks it is in response to Riley's virus last week. The body responded appropriately. I am gleeful. Tom has to swallow his words again. The numbers are good enough to put his argument off again and continue with the current treatment.
Hemoglobin is 10.6. Everything is higher than before he got sick. whites have come down from 5.9, but that number indicated that they were fighting some infection that has now passed. They did what they should be doing. It is still improved at 3.9. The numbers still aren't great. My hemoglobin was 13.4 when I gave blood. My platelets were 450,000. When I get sick my white cells go past 10. But we are crawling out of the gutter.
They cancel our December appointment and tell us February 17 will be our next visit unless we absolutely cannot wait again, or something comes up. I ask since Riley is turning 15 if he can get his permit and practice driving. The doctor says Riley has a few platelets to spare, but asks if our car has airbags. Yes, all our cars have airbags. He also asks if Riley has had his flu shot. I was going to ask about that. I didn't know with the immune suppressants if he should have the shot. Yes, we will do that while we are there.
The doctor does his regular exam. Both doctors listen to Riley's heart. They check his liver by pressing on his abdomen, causing Riley to giggle uncontrollably. Riley is terribly ticklish when it comes to the abdomen and liver areas.
The doctors leave and the nurse arrives with the flu shot. the needle is about an inch long and has to be administered into a muscle. Riley chooses his left arm as the nurse says he will be sore afterwards in the area where she gives the shot. What a change a year has wrought. Riley doesn't even flinch. he even jokes about the shot and how he ought to administer one to his parents. I have yet to get my flu shot. The year I got a flu shot I came down with a horrible case of the flu. I figure it must not have matched that strain. I haven't had a flu shot since before the boys were born. I guess I should probably get one this year. I wouldn't want to bring anything serious into the house. Riley is still compromised or we wouldn't have had to go to the ER last week, as a precaution.
I ask Tom if he wants to have Riley ride home with him, but he says he wants to smoke. Riley and I both complain that the cars all smell of smoke. He needs to stop smoking in the other cars, he is making them all stink. Riley and I head out. I have to back the car out of our parking spot so Riley can get in, as the car next to us is so close Riley can't get in on his side. The rain is coming down and it is dark. It feels late but it is only just after 5:00 pm, peak rush hour traffic. I like the freeway because it is well lit. The cross town roads don't have a lot of street lights. I am always afraid I will not see someone in the dark, bikers or walkers.
The traffic on the freeway is heavy. We finally make it home. As I tell my boys, we are moving faster than the pioneers on the Oregon Trail if the traffic is moving above 13 miles an hour. We were going 25 or 30 at some points, but it was all forward progression. With the rain coming down and the dark night, I don't mind the slow traffic. I always like to drive a little more cautiously when Riley is with me. We are in the middle lane. We pass Tom's car several times on the freeway. He was in the supposedly fast lane then moved over to the slow lane. Riley calls him on his cell to let him know we see him. He picks up but then says he can't talk as he is driving, good man. Me, I just sit in my lane moving forward.
Once home though, I have to fix everyone dinner, then I throw on my pajamas and climb into bed. Visiting the doctor is always stressful and exhausting just keeping up appearances. Tom can sit there and dwell and mope and want all this to be done. But as long as there is progress and forward progression I want to stay the course. Riley does not want to do BMT. He has seen and heard enough to know the discomforts. Tom is not going to be able to get him to do the BMT unless he can come up with some good arguments. I am thrilled with the new numbers. If we reach 150,000 platelets, I will be ecstatic. The next phase will be weaning off the drugs. Not relying on the immune suppressants. We need to know Riley's marrow can sustain itself without assistance.
February 17, 2011 will be our next bench mark. Patience and good humor will be our mantra. I gave Trevor's teachers cards with gifts in them for the Thanksgiving break. I think it helps to keep a positive outlook. I like to assist those poor teachers when ever I can. Trevor is giving us all his own challenges in a different way. I think everyone is looking forward to this long break.
Trevor even had one teacher write me a note saying he had no homework over the break. He knew I would put him to work without it. I thought that was very pro active. We are still working on improving his grades. I am so tempted to keep him in middle school one more year. High school will be a disaster.
Meanwhile Riley is flourishing in his classes. I want to send him to private college, some place warm and nurturing like my own Whitman in Walla Walla. Trevor wants to play football so Whitman wont work. Whitman doesn't have a football team.
Trevor's coach said when he is out on the field the opponents double team him. I could tell. Every year he gets better and better. If only that dedication would spill over into his academics.
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