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Feb. 28
Xander passed his blood count today. His ANC is
all the way up to 2300 from 550. His platelets went up a tiny bit,
and his red blood cells only
dropped a tiny bit. Remeber though the last time
he had the chemo he gets in the morning he was
hospitalized a week later with a fever, terrible counts, and the need
for TWO red blood cell
transfusions. Cross your fingers!!
Feb. 25
Xander's health seems stable at the moment. We won't know about his blood
counts until Tues. afternoon. Until then he remains in good spirits and content.
Feb. 22
Xander did NOT pass his blood counts in order to have chemo this week. Some weeks he must have chemo regardless of his
blood counts. Sometimes especially at the beginning of new medicines he had to reach a minimum level in order to begin. In
this case his red blood cells are still wonderful giving him lots of energy and rascallyness. His platelets did not drop,
but are at a level that will not allow him to take part in vigorous activities. The big problem is his ANC count (see definition
below) is way to low. If he develops a fever right now it’s a emergency room visit then an ambulance or helicopter flight
to Doernbecher. There is now doubt of the hospitalization at this point, at some point in the next two or three weeks he will
develope a fever and then he will be in the hospital for at least 48 hours or until his blood counts stabilize
at a safe level.(The last time it was 5 days, but a couple of weeks or months is not unheard of and a real potential) He
can't have guests or go in public. He did get to go to the Eastmorland park in Portland today. Take a look at the duck pond
pictures on that page. We use Purell to kill the bird germs, but he had a blast.
Feb 16
Xander's blood counts were better then we expected. His platelets only
dropped to 164. The Drs. don't do transfusions until he is at 10 or less. At this level he needs to stick with less physical
activities though. His red cell count went up slightly to 14. This is the highest its been since he was diagnosed in Aug.
His ANC or average Neutrophile count (white blood cells) have dropped to 850. http://www.patientcenters.com/leukemia/news/blood_counts.htmlThis means if he gets a fever its up to the emergency room staff as to whether he is shipped to Doerbecher. Since his counts
are still dropping, and he is horribly fatigued that would most likely be yes. It also means he can't spend time in public,
or have guests at this time. Chemo is next Thursday, unless his counts change radically Blood counts will be done on Wed.
The bruise above his port was given a clean bill of health by Doernbecher staff as was the extensive Mucositis in his mouth.
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/oncology/manmuc.html
There was concern of cold sores which are a big problem during chemo,
but Mucositis (temporary deterioration of the mucus membranes) is normal and a problem Xander has been dealing with for 6
months. |
Feb. 15.
Xander still has a bruise above his port from last weeks chemo treatment.
His nurse is not comfortable accessing a vein instead of his port, and I'm not comfortable taking him to the local lab (They
aren't that great with pediatrics). Because of this we are going to Portland Thurs. to have blood counts done. If we need
a transfusion we can get it done there as well. I'll post counts Thurs. night if we make it back. There is always the chance
of a fever with a blood transfusion, and that would mean at least one night at the hospital. Lets cross our fingers he doesn't
need one. If he does get a transfusion, at least he would feel better then he does now.
Feb. 13
Xander's health is the same. He is exteremely fatigued. His hair loosened today so he is back to pulling bunches out
and tossing it at his family members. I hope it all falls out this time. If you saw it before you would realize why. It was
patchy and awful looking.
Feb. 12
Xander was quiet ( physically not vocally today). I keep checking him for a fever. We just kept him busy with games and
TV. His sister enjoy
reading to him. His nurse will come out to the house on Thursday for blood counts. I'll post them as soon as I have them.
Feb 10
Xander is much better today. He has seroid hyperness, but can walk and
boy is he. Lots of energy and bounce.
Feb. 9
Xander's health is definitely deterierating. Most of his blood counts
are dropping. The red cells are just fine at this point, but his platelets are down from 309 to 210. Transfusions are done
for anything under 10, but at this level he needs to moderate his activity level. Xander had just began using his bicycle
again, and talking of skateboarding soon. Just to keep this in perspective when he started chemo his platelets were over 15,000.
To complicate matters further his white blood cell count is now 900. White blood cells can't be transfused, but if he gets
a fever and they are under 500 it’s a automatic hospital stay. At the level they are now it depends on how sick he looks
and whether his counts are still dropping, and in this case they are. He can only go in public on a limited basis, and we
are avoiding company of any kind. The poor guy is also having side effects of two of his drugs. The are making him shaky and
affecting his nervous system. All of this is temporary and will be gone in a couple of weeks. Right now though he is unable
to walk sometimes due to extreme muscle fatigue. Yesterday at the DR. he needed to be carried or wheel chaired around, and
was barely able to stand for balance and muscle testing by the Dr. Dr. Hsu says its at a acceptable level and will be
gone soon. Today he is walking, but staying "still" as much as he can. There is no chemo next week, but we are having blood
counts done locally, as he may need a transfusion between now and his next DR. apt.
Feb. 7
Xander went to all of his classes today. We home school all our children, but Xander takes three
outside classes on Tuesdays. Mostly they are just to give him interactions that don't involve "pokes" and Drs. He slept on
the desk for his first class, enjoyed his second, and left part way through his third. I doubt he will be able to handle class
next week, and after that his blood counts will start failing dramaticaly. I'll I'll start posting every couple of days again
now that his health is changing. I'm a bit worried about him attending classes at this point. A child in the second class
was coughing. I kept Xander well away from him, but I found out latter he had a fever of 104 the day before. His mother knows
about Xander, and I don't know what she was thinking bringing a sick kid to classes. If Xander gets a fever of 100.4 he is
most likely going to be hospitalized. At 104 he would definitely be hospitalized.
Feb. 5
The second Snow White performance was today. Xander did great and had a blast, but his health is
starting to go down hill. The steroids are really affecting his personality. His counts are still good though.
Feb. 4
Xander had both a performance and rehearsal for his Snow White play today. In total he was there
for 6 hours. The little guys is so tired. His counts are still good, and he did such a great job.
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