Numbers- July 2010

White cell 2.3 (from 2.4- inconclusive)
Hemoglobin 11.0 (up from 10.4 on 6/24, not bad, low normal)
Platelets 67 (up from 62 , a 1% gain)
BASO% 1 no change
EOS% 3 same as last month
Reticulocyte absolute # 23.8 (down from 51.6) This may not be good as these are the new juvinile red cells

The White cell family:
Neutrophil 1.2 (6/24 was 1.1)
Lymphocyte 0.7 (0.9)
Monocytes 0.3 (0.3)


Its like watching a turtle sleep. Every once in a while something might twitch to show that things are happening and alive. I had my interview and it looks like I got the job. three days a week including Saturdays though. I asked for every other Saturday, because of football season. They said that they could accommodate. I also mentioned the Make a Wish Trip and the potential to need 6 to 8 weeks for BMT if necessary. Again they were understanding. As I said before they hire by word of mouth and do not advertise as they are looking for a particular type of employee that melds well with their clientele.

I am to send back the formal application and they would let me know when I can start training. Training will take a month or so. They will know by the end of that time if I will work out or not. I look forward to starting after years of talking about going back to work.

I had taken Riley to Starbucks across the parking lot prior to my meeting. He waited in the car for me to finish. The interview took 4o minutes. I met the owner, who has owned the store for over 50 years, and his manager. I also had the pleasure of meeting another employee who came in to open the store while we met. I am hopeful that this will be a good fit for all of us, no pun intended as it is a specialty shoe store.

I am told 80% of their business comes from Doctor referrals. Very few are just walk ins. One client may lead to 5 others just by word of mouth. My mother in law moving in soon is good timing, if this works out.

Riley and I head to the hospital directly afterward. Riley needs to give blood so we can see his numbers. We park in the parking garage and head in to the seventh floor. I sign the arrival card on the door of the nurses station. There is one name ahead of us. Five minutes later they call for Riley. I ask him if he wants me to go in with him. He shrugs, either way is fine. I go in with him.

He sits at the raised chair that has special padded armrests. He asks for the anesthetic while the nurse wraps the rubber band around his arm and has him pump his fist. She tells him she doesn't have any as she sticks him with the needle. By the time he says "Awe, I like anesthetic" She is done drawing blood. "Wow you are fast". With a grin on his face, Riley leaves the room.

We head to lunch since we have 2 hours until our appointment with the Doctor and get the blood results. Riley orders a bacon cheese burger with seasoned fries. Once at the table he says its over cooked and he isn't hungry after all. His Dad texts us and says he is in the building. I text back to have him join us for lunch and he can eat Riley's whole meal. He does just that. He arrives shortly and wolfs down the burger. We talk about my potential job and then I suggest heading upstairs to the waiting room. Tom leaps from the table with alacrity. He has been waiting as patiently as he can for those numbers.

We are over an hour early so a nurse comes and apologizes that we will need to wait until our appointed time. I figured the doctor was at lunch. Kung Fu panda was on again. We have seen that movie every other time. We chuckle that we have never been able to see the whole movie all the way through. I read the paper for a while. We are called promptly and see the doctor within 15 minutes of our appointed time. Riley gets weighed 57.4 kilos and he measured 68.5 inches. He is growing just fine to fit his size 13 feet.

The numbers are close to what they were last month but improving slightly. 1% gains more or less. At this rate it could take years to recover. I ask how long Riley can stay on the cyclosporine. The Doctor tells me he has patients that have been on it for more than a decade. Riley is on a low dose as it turns out. He could take it indefinitely. My mind turns. That means we could time BMT for next summer rather than miss school, or postpone it indefinitely. We will have some serious discussions at our next appointment. Riley would opt to not have the BMT.

Now I understand the articles regarding living with Aplastic Anemia. I couldn't figure out the long term discussions. How these people could still be living. I had not realized you could just go on indefinitely without serious repercussions if you take the autoimmune suppressants. As long as Riley keeps his fluids going so his organs don't stress, it is a possibility not to do BMT. I will be discussing this option with Tom. The risk would be an illness with his compromised immunity.
Everything is a measured choice, risk, gain.

Riley has what looks like a virus to the Doctor, on his skin: chest and fore arms. Little red raised bumps. Riley had thought them in grown hairs or zits on his chest. He has had them for several weeks. The doctor says if it gets worse to call the dermatologist. It may just need to run its course.

The zit meds are working. Riley's face is much better. He did have a new big juicy zit on the bridge of his nose today, but there is definitely an overall improvement. His forehead has little red dots where the zits used to be but the zits themselves are gone and so is the inflammation. The Retin A should fade the spots over time.

Tom is quiet during the whole exam. he is waiting for August to pass. our next appointment is September 2. The Doctor is away for August. It is a morning appointment which is unusual, but we found out he is substituting for other doctors taking their vacations.

Oh, I forgot the insurance angle from our side. If we get everything done this year, we wont have to pay another $5000 max copay for Riley. Well, this time Tom can put it on his flexible spending account. I am sure we will be going through a lot on just the prescription's' co pays.
Honestly, I have no complaints with good insurance and good doctors and options all around.
September will come soon enough. We will enjoy this marathon of a summer.