Numbers

We decided to move up Riley's appointment with the Doctor so he wouldn't have to miss school. The appointment was for September 15. School starts on the sixth. I called and the Doctor had an opening on the first.

AWSOME numbers. Everything was low normal. Hemoglobin was 14.1. You can donate blood with this number. Riley laughed when I told him so. Platelets were 164,000. 150,000 was our goal. White cells were 6.7. Neutrophils were 4.8. Hematocrit was 41.1. No more low indicator arrows on the printout.

The Doctor was surprised and pleased at the positive bump. As a result, when I asked Tom's question if Riley could accelerate the dosage decline, he said "Yes". He normally wouldn't but these numbers show that Riley's body responds well to the dosage decline. The new dose starting today is just 50 milligrams in the morning and that is it. Still continue with the weekend antibiotics until we see the doctor again. He said giving up the antibiotics is a little like playing with fire while on cyclosporan. You can quickly go to pneumonia without the antibiotics, so continue with the weekend dosage.

Riley had been skipping so that was a good reminder of its importance. The missed magnesium was not so worrisome as symptoms present in aching joints and pain if you get low in magnesium. Since Riley has not had those symptoms the doctor was not worried about missed doses. Riley take multi vitamins which also have some magnesium, the gummy chews, which the doctor laughed at, saying Riley was 15 and still taking the chewables.

He said if Riley liked the chewable he ought to try Nutella, the chocolate hazelnut spread. We have had it at my Mom's and it is good. I guess on doctors recommendation I will buy it for our house now.

For one month Riley will continue on this 50 dose, then quit. No more cyclosporin in a month. We will do a local blood test, then in two months from now the doctor wants to see Riley. We will do a blood test then. So we have a blood test once a month for two more months then if all is going well and looking good we go three months between for a year then six months for two years. NO more drugs though in one month.

We were ecstatic. The doctor said long term there should be no reason to think the kidneys or liver were damaged. Riley had classic Aplastic Anemia and responded like a poster child to the treatment. Our friend who had everything possible go wrong is still struggling. His case was much more complicated as another condition in his liver caused the reaction. Having a bad liver to start put him at a disadvantage. I pray every day that he will eventually have as good results as Riley.

We got out of the doctor's office right during rush hour. The freeway was backed up from where we got on so I opted for the next exit and took the long way home. It was a lovely drive and beautiful evening. You can imagine what a positive mood we were in. The music played on the radio and nothing could dampen our mood.

Riley's face even looks pretty good considering he hasn't been putting his meds on it. He has been with his best friend on and off for the last few weeks, either at their house or ours. His friend's mom said they were having a grand time. She didn't want to give Riley up at first. She said they played like only old friends who have grown up together can play. They played Nerf wars and ran around in the woods. Romping around like a six year old.

Meanwhile on the home front, things did not run as smoothly as I would have wished. We found out that Trevor will be benched the first four games of football for academic probation. Those bad grades finally caught up with him. So Tom and I and Trevor went round again on the decision to push forward into high school. Don't tell me the arguments. I heard them all in the last week. As usual I lost. I am a little pissed off that my testosterone house hold can't seem to see the positives of getting a do over before high school. All they see the test of fortitude, the learning lesson.

The state and the district have rules. Pass five of six classes in the previous semester or you are benched on probation. Trevor is on double secret probation, which isn't really a secret as he stands on the side line of every game in shorts with no gear. He also went to a high school football bonfire kickoff at a cheer leader's house in the country. The camaraderie was strong and the company was good. He didn't want to give all that up for a repeat of eighth grade. He did announce his probation at the fire. He wouldn't be able to hide it while standing on the side lines. They all took it well. One young man even said he had been there himself.

Trevor made it to band practice also. He called his councilor to ask about band and was told the first practice had started 10 minutes earlier. We are five minutes from the school. He made the practice, which was being run by a senior. Introductions were still being made. Trevor will definitely be involved in high school.

Tom came home wondering where the boys were. I filled him in on Trevor's busy schedule. Trevor will need a tutor, which with budget cuts is not available at school. Football practice will also interfere with right after school tutoring. I need to find some student linked with school and similar classes so they can remind Trevor of what is due and when, mindful that if he does not have good grades in three weeks he misses the whole football season.

This is just the beginning. School hasn't even started yet and already there are issues. My thought is giving Trevor time to mature. He would be that much bigger and more experienced for football. Tom's attitude is this is a life lesson best learned now. I just don't think you can put a toddler in kindergarten and have him succeed. It has been my argument all along. Trevor is too young for his class.

At the bonfire. I found out that two other freshmen just turned 15 or will be turning 15 in the next month. Trevor just turned 14 two weeks ago. Riley's best friend is moving and they are going to have him repeat freshman year at his new school. He didn't even fail a class, they just want to give him an edge for success.

High school is hard enough, why make it more difficult. But I am only a female. I don't understand the male world, I am told. Tom and I are polarized on this issue. Trevor wants to be in high school so bad, with his father's support I can't win. The movie fantasy is alive and well in Trevor.

I am still doing all the driving. I thought about rebelling and letting Trevor and his father figure it out for himself and get to school himself. I just couldn't do it, punish Trevor any more than he already is being punished. The one thing he does well and is built to do well is be a line man in football. He is strong and big. He is only just 14 and you can't tell him apart from any of the other football players. He will not be a tiny boy to be hassled in the halls.

His bike has a broken break. The bonfire party was way out in the country. I don't want Trevor to have a high school experience like mine, overwhelmed by a giant school that I hid in my room for four years. If I can get him to an event, Trevor has no problem showing up and participating if I get him there. The key is I need to know about it. Trevor doesn't pass on information well. Organization skills are definitely on the list to be addressed for school success.

Tom lived in a community where he could bike everywhere and was self motivated. His high school experience was very different from mine. He is still in contact with his high school friends. I have no friends from high school. He doesn't know how miserable it can be. I just want my boys to have four wonderful years. You get one shot at life. To enjoy and live every day is a blessing. I want my boys to live every day. Why make life any more difficult than it already is. Testosterone wins and the boys are going to climb the hill the hard way.

So that is the reason there was a gap for a few days. I was fuming. I still am, but Riley's good news put me in a better mood. I will just do what I can, and enjoy every day. Off to cut more blackberries.

New Numbers June 2, 2011

After a boring day of watching recorded night time soaps to kill time, when I should have been sorting and packing, the timer went off on the stove to tell me it was time to pick Riley up from school. I wanted to grab him ten minutes early to beat it out of the high school parking lot before the mob of students clogged the area when school officially let out. I also wanted to get to Dornbeckers a little early so Riley could do his blood draw and get the results back. Last time we were hanging out until five because we just missed a batch being set up at the lab. The lab does them in groupings about a half hour apart if not longer. So if your timing is off or you are late then you have to wait longer for your results towards the end of the day.

Riley's appointments these days are as late as possible so he misses the minimum amount of school. When he was in the phase where he might be getting a transfusion, the appointment started at 10:00 am and could last all day until rush hour if they had to order blood. We are long past that phase now. Its just a quick stop at the lab for them to prick Riley for a small vial of blood, then off to the clinic to wait for the results and talk to the doctor.

Today's numbers
145,000 platelets, down from 178,000 last time in April, but he had just recovered from a cold the week before which can cause a bump in platelets helping the body recover. 134,000 was two weeks before that, so it looks like the numbers are still going up.

Whites were 4.3, which is great. A normal person has 5 when he is not sick then it bumps up to 10 when you catch a cold. Riley has been reaching 5 when he is sick. Now he is not sick and almost has a normal number. Whites don't last long, less than a day. Its good to see an almost normal number.

Hemoglobin was 11.8, again a pretty decent number. And all the young cells neutrophils lymphocytes and monocytes were all showing improvement from last time. Neutrophils were 2.5. It is incremental progress yet progress none the less.

A very dear friend has a child going through what we went through over a year ago. My kids have played were her children. We had our children grow up in the same area. I asked the doctor if there could be a connection. He told me in 2005 there was a cluster study done on the Kalama catch basin, inquiring if there was any toxin that might be causing an abnormal amount of children to be catching this rare disease. The results were inconclusive. I am going to look up the study. It will be available from the SW Washington Health Department. Tom would probably enjoy reading it. I will let him summarize it for me. He really got into studying the disease when Riley first got sick. Ordering all sorts of Medical Journal reports about Aplastic Anemia off the Internet. He became quite competent on the subject. He could really grill the doctor in his own medical language each time we visited.

Tom was working today so it was just Riley and me. Tom laughed when I called him later, and said the Doctor probably enjoyed the break of not getting grilled for once.

Riley will be decreasing his dosage again. From 100 milligrams morning and again at night, he will do 100 in the morning and 75 at night then in three weeks go to 75 and 75. I ordered 25 milligram pills last time so we would be ready. Originally the doctor said he would be decreasing the dosages at a 10 to 15% rate. We have been a little more aggressive. This will be a 25% decrease.

Next visit is July 14 at 1:00pm. School will be out so we can do the middle of the day and avoid the commute. We hit rush hour heading home each time when we leave the hospital at 5:00pm.

Riley wanted KFC for dinner. I can usually be convinced to do fast food on doctor visit day. I just want to put my feet up and type afterwards, let everyone know the results and keep the record up to date if we need to refresh our memories in the future. We had stopped at Starbucks in the lobby of the hospital already between the blood draw and the appointment because we had time to kill. We were still 40 minutes early for meeting the doctor. Riley had ordered a mocha frapaccino with Carmel. I had to remind him decaf, and a blueberry Muffin to go with it. I told him he would probably like strawberry frappaccino better, but he wanted to try the mocha with Carmel. I think it was the Carmel that intrigued him. He finished most of it but gave me the last quarter of the glass. It was good, but I think he liked the strawberry flavor we had last time better.

I told him on the elevator ride up to the doctor's office that cancer likes to feed on sugar. It was just a hint that he might want to try eating more healthy. So we get to the nurses station for check in and weigh in, and he tells her I told him that sugar causes cancer. That is not what I said at all. She looked at me as if I was an idiot. I only wanted to encourage him to eat some vegetables once in a while, as I explained to the nurse.

Riley weighed in at 138 pounds and 5 foot 10 inches tall. Growing well. His best friend though is now 6 foot 3 inches, so Riley definitely has some catching up to do.

So feeding Riley, who is so skinny, is always encouraged. If he wanted KFC or fast food for the second night in a row (last night was DQ to celebrate Trevor's band performance) then KFC it would be. I can feed us all for well under $20 and cooking is so not what I like to do, especially after stressful meetings, even good stressful meetings. Everyone enjoyed the food. I didn't have to hear any complaints about my food or that someone didn't like what was being served which is the usual result of my cooking.

I did make Trevor do his homework. Riley took a shower after dinner to wash away the day. He is good about showering every night. He then made a batch of brownies for everyone. Trevor made himself a juice smoothie once his homework was done and got his book and some bubble bath for a long soak in my bathroom tub. He needs to bath regularly also, and if a long soak gets him to bath, well, then that is what he gets.

The sun is setting out the window. I love the late sunsets. The recent rains have made the air smell clean and fresh, full of spring hope. The light is hitting the clouds giving them that fake painted look, all pink and frothy against a neon bright blue sky. No fights tonight. Everyone was agreeable about doing what they were supposed to be doing. Peace and bliss reign. Its usually that way after take out dinner on hospital visit nights. No one wants to ruin the moment of good news, not even Trevor and me over his homework. I just hope he remembers to hand it in tomorrow.

Tomorrow is the last day to bring grades up to be included in the not failing field trip to the movies the teachers are offering next week as incentive. I wont think about that now. That is Trevor's choice. He did so well last night, other than forgetting one of the instruments for his part. I can only smile though, because that is so Trevor, and the news is good, Riley is improving. Enjoy the not raining at the moment sunset.