Nov. 30
Today Xander started phase III of his chemotherapy.
It was far from our best day. The only treatment he needed today was spinal Chemo. For this procedure they give Xander a medication
that has a conscious sedation effect as well as an amnesiac. He becomes well medicated, or as Xander likes to call it "drony"
and supposedly does not notice the spinal. He is rolled onto his side while his nurse and I talk to him and distract him.
Normally he is so well medicated that he can barely continue counting (my method of distraction). Today though he was wound
up and couldn't settle down. He felt the entire procedure and was crying through out. Dr. Lampkin said that since Versed is
a amnesiac that Xander would forget the entire procedure regardless of how traumatic it was. Several hours latter he was still
complaining and angry. this evening though he has lost all memory of the procedure and doesn't even remember having the needle
taken out of his port, something that because of the large piece of tape involved is usually a big event. Xander's father
and I discussed it today and for his next apt on Dec. 28 he will be completely sedated. We can decide at that point whether
to continue with full or partial sedation. Full sedation leads to a much longer day, and Xander is not allowed to eat that
day until after his procedure. He has had quite a few conscious sedation that were very successful in the past few months.
We also learned today that Phase III medications might very
well cause similar low blood counts that Xander suffered during Phase II. We will have counts taken next Wed. to see the trend
for this phase.
Nov. 29
Blood counts were good today. Anc was 900, platelets are up to 94,
and his red blood cells were 9.9. All of these are above the min. required for chemo. Wed. will be the first day of Phase
III.
Nov. 28
Yesterday way the winter carnival holiday party for the candle
lighters. WOW, there were maybe a dozen elves, chuckie cheese, the oregon duck, the 2 nasty beavers, a teddy bear, a nut cracker,
2 snow men, santa and mrs clause, a dozen or so clowns, Michael Allen Harris and Julianne Johnson (wow!!!!), the lake oswego
academy of dance, the lake oswego wind jammers, Lucy Fleck, Miss oregon, the rose festival queen, the 1951 usa yo yo champion,
and of course the reptile man. Can you guess how much fun Xander and his siblings had. We are going to post many pics from
the holiday party soon. Xander is shown with the oregon duck (he can hum the fight song), the yo yo guy, santa of course,
and the reptile man with a caman and a albino burmese python.
Health wise Xander is great. His platelets are still low. He brused
just from resting his head on the arm rest of the car. They seem to be improving though and we are having counts done tommorow.
His color and energy are wonderful!!!!! If his counts allow he will start phase three of chemo therapy on Wed. Nov. 30th.
Happy Thanksgiving
Nov. 24
Things are looking up. Xander's ANC is up to 600. If he got a fever today there's a good chance he
would not be addmited to the hospital, unless there were other symptoms of infection. His red cell count, thanks to the transfusion
has risen to 9.8. After the last transfusion he had a count of only 8.8, so this is a great improvment. Xander's platlets
are still slowly droping though. Last night they were only at 32, but at this slow drop he should hit the up-swing in counts
before he needs another transfusion. Today is good!!!
Nov. 22
Xander and I have joked today that the unit of red blood cells he received were from a hyper person.
They really have given him a jolt of energy. When his counts were done just prior to the transfusion though his platlets were
still slowly droping. We are having blood counts done again tomarrow to keep an eye on the platlets. It will be a busy weekend
keeping our active little guy calm, but with low platlets there can be no climbing the door frames or pouncing on
the furniture. I'll post the blood test results when I receive them tomarrow. Today the platelets were only 35, yesterday
they were 39. The hospital does transfusions at under 10, but for a normal not cancer patient they would be over 1500. Xander
was over 3000 in the begining of Oct.
Nov. 21
Xander had his counts done early this week do to a very hard weekend. Unfortunatly his
red blood cell count is refusing to perk back up. On Tuesday he will have a transfusion of red blood cells with a repeat blood
count to be taken on Wed. The good news is his ANC (white blood cell count) has climbed from 100 to 450 over the last 5
days. This is a huge improvement for Xander and gives home for better counts overall to come soon.
Nov. 20
Xander's lips match his face in color today, and thats not a healthy blush. Its pale and bloodless.
We are having blood counts done on Monday to check his levels and the possible need for a transfusion.
Nov. 18
Nothing new today to report!
Nov. 17
Xander had his blood counts done yesterday. His red blood cells and platelets continue to be
low, but do not require a transfusion. His white count is the concerning issue of the moment. Its at 100, and 500 or
below is considered nuetropenic. This means he can become infected with any virus or bacteria with little or no defence. We
are keeping him away from any public place, as well as not having guests in the home with the exception of his wonderful
nurse Shirley who visits us each week for blood counts.
Nov. 14
No changes, Xander is feeling fine today.
Nov. 13
Xander's blood counts were ok today. His platlets are up to 69, and while his red blood
cells are dropping again its a very slow drop, and we are past the supposed "low" peak of the chemo. They should start improving.
The next counts will be taken on Wed. so check back for more news.
Nov. 12
This morning Xander was covered with petechial bruising. This was a big sign his Dr. has
had us looking for signifying low blood platelets. After an extended visit at Sacred heart hospital we found his platelet
count to be 9. Doernbecher protocols require a transfusion at 10 or less. After his transfusion of platelets, Xander had a
reaction of hives to further complicate his day. Benidryl seems to be dealing with the hives wonderfully and tomorrow he will
have his blood counts retaken to ensure the platelets were enough.
Nov. 10th
Today Xander's platelets are very low. The Dr. doesn't transfuse platelets until they
are under 10 on the blood counts sheet. Today they were only 33. Normal is 1500 or higher. His red blood cells were only 16%
and transfusions are done at 20% or less. With the fresh new red blood cells in his system they are a bit higher now. The
other big problem he faces is his white blood cell count. Neutrepinic is 700 or less. Xander is only at 450. This means if
his has the slightest fever he will be hospitalized for several days. We are avoiding all unessisary contact with any situation
that might bring home a virus.
His Auntie Bon made today longer and more amusing without even intending to. The very long drive
home was a challenge do to the heavy traffic, and rain. Xander kept the volume up in the car by singing "Thats the way uh
huh uh huh I like it uh huh uh huh" He heard this lovely ditty driving with his Auntie, and is making it a trade mark. Clearly
his fresh new blood has given him more energy and cheer.
Nov. 9th
Xander needed to get blood counts done today. It was no surprise that he needs a red
blood cell transfusion. By 9:00 in the morning we will be at Doernbecker clinic for a transfusion. Its just a day trip though,
and he should be home by bed time.
Nov. 8th
Xander's energy in increasing. There is still no fever, but he is still restricted on
his activities. No bikes, or balls until his blood counts go up a bit. He also needs to keep away from to many people in order
to reduce his risk of infection during this tricky period. Only a week and a half to go before we move into a more positive
phase of treatment.
Today Nov. 7th he is doing "ok". The little guy is pale as can be, but full of energy and attitude.
His DR.s say that anemia is not a terrible condition on a short term basis. His blood counts should start climbing in 14 more
days. We are all hoping he doesn't get a fever between now and then or he will be transported up to Dornbecher Children's
Hospital for treatment.
I will try to update this site every couple of days so please check back for updates. Pictures will
be posted soon.
