Xander's temperature spiked and receeded twice this morning.  His cough seemed to be a little better.

A blood test was done and his platelets are low (41) so he will be performing another test to see if it dips below 30.

The results of the X-rays came back and there are no obvious problems with his throat.  No pneumonia or obstructions.

Mom asked to talk to the neurosurgeon to talk about the swelling on his head which still has not come down all the way.  Also about maybe getting a CT scan to see if everything is as it should be.

Baba and Great Grandma are at the hospital with Mom so they can help out with Xander. Dad will come, after work, to relieve Mom so she can go home and rest.

The night was pretty rough with him waking up every 15 minutes and coughing his little guts out (almost literally).  Finally a combination of Benedryl and Robitusen DM calmed him down enough that he (and Dad) caught a few hours of sleep.

Another concern is that he has had nothing solid to eat for a few days now.  Most anything he has drank he has throw up and he has already lost about 10% of his weight.  The nutitionalist will be coming down again tomorrow.. Probaly have to start him on IV nutitrition since we do not want another tube to be put down his neck so they can feed him mechanically.  The cough is bad enough without that.

Sat Mar 15th, 2003 Xander started the slow climb to a fever as his immune system slowed down.  His cough was terrible.  He started at 12:30 with a 37C temp and climbed to 38C around midnight.

We called the oncologist on call and she cleared the way through emergency to get him in.

Once in they took checked him out - Temp: 38.1C and wanting to sleep a lot.  They took blood and, of course, both lines of his Hickman were sluggish.  We tried various positions and lying down finally allowed the blood to flow out.  We got the results back a few hours later and his HCT was 20 and his ANC under 200.  Time for admission.

He was started on antibiotics and given Tylenol for the fever.  The initial reason given for his cough was "Chemo Cough", that may have been brought on from the drugs he has been given.  But his cough had started before the chemo so we were pretty skeptical.

We got him in the oncology ward bed and he zonked out for the night even with regular check-ups.

Sunday he continued on the antibiotics and Tylenol and was given 190ml blood transfusion to get the red blood cell count up.  Again a lot more sleeping.  HE was also starting to drink more, which was good.

Around 17:00, when Mom showed up from sleeping at home after a late night, he was starting to perk up.  After the 4 hours for the transfusion we took him up to X-ray to get a few pictures of his chest to see if there is anything amiss that would cause his cough. He was pretty much himself at that point.

We should have a new blood test and results from the X-rays on Monday.

Lisa did go for her OBGYN appointment this morning. Everything is fine. A nice 140 beats per minute from the fetus. This is 28 weeks!

Xander woke up with his cough being a little worse than it had been. It has been about two weeks now. So Lisa and Sharon are taking him in to Children's to get him checked out and make sure it is not something to be concerned about.

He also has to get his Vincristine shot for this week, so after Labs and getting checked out he'll get his shot and be back home.

His HCT was down to 24 and his ANC was 1157, which was still pretty good.

Lisa also met with the oncoloy nutritionist and foudn out new and novel ways to make each spoonful full of useful calories given that his appetite has been pretty bad since being released.

Xander was supposed to go in early this morning for a Liver baseline test.  But we were led to believe that there was no prep for the test both from the nurse and then from the appointment documentation. When Lisa and Xander got there, early in the morning, they were informed he should have only have clear liquids 4 hours before and that the 3-4 hour procedure was actually 8 hours!

Since Xander had some milk Lisa cancelled.  We'll go through this some another day.

Strangley enough Mom's OBGYN appointment was cancelled as well since they were way behind. Not a good day for appointments.

With the many wrapping and re-wrappings of Xander's headwrap his poor little scalp is getting very red and two suspicious spots that may be the start of an infection are  present.  Lisa, Sharon, Great Grandma (Dorothy) and Xander will all be going in to get it checked out.  Now how do we keep the swelling down?  We still do not want a shunt.

The ARPN checked Xander out and there was no infection, just his skin being roughed up by the gauze and pressure from the coban.  She used a fine ACE wrap and he seems to be much happier now.

We got the results back from Xander's spinal tap and they found no cancer cells in the spinal fluid.  This is good news in that it allows us to go forward with only conformal radiation to the brain.  Which means they will only irradiate the area the tumour was resected from.

If it had been negative then we would have to go with full brain and spine radiation which would certainly have more side effects.  The side effects of radiation on the developing brain are many and ugly.

The bad part is you will not know until many years down the road what those side effects may be.

The radiation will start in a few weeks.

One interesting addition to our nightly ritual is the injection of G-CSF (Neuropen) to help white blood cell production.  You take a fine needle insert it into fatty tissue (upper thigh, tricep, or around the stomach) and inject the G-CSF.  Xander loves this one, let us tell you.

Xander is back home from his first round of Chemotherapy. 

He was checked in Fri Mar 7th and given three rounds (Vincristine, Etoposide & Cisplatin, then two of Cylophosfamide & Etoposide - all along with the prerequisite anti-nausea medications - Zofran & Benedryl).  He also had a spinal tap so we can check the spinal fluid for cancer cells.  He has come out of it pretty well with just a bit of nausea.  So far so good.

We then had to head over to Seattle Cancer Care Alliance to get his Hickman line checked for flow once we go for Stem Cell harvesting.  But no one told us where to go or who to meet - just be there at 2:00pm.  We got there and got redirected to a different building (since it is a large campus).  Once we got there Xander threw up.  Then we finally got to Aphresis unit and got the tubes checked and both had little to no flow, coming out, at all.  Going in was fine.  Something else to check now...  Lesson learned - keep asking questions and more questions.

It will be an interesting week as we wait for his immune system to tank and will start going for regular blood tests soon.

He is in pretty good spirits, just a bit tired from an extremely busy day with no nap.

Xander is doing well after getting out from his second surgery to remove a malignant brain tumour (yesterday afternoon). He is moving all arms and legs, focusing his eyes and speaking as before the surgery.

Feb 24th,2003 he was readmitted to remove the remainder of the tumour. The surgery was a success with all visible tumour material removed.  He also got his Hickman line installed which has two external tubes that end in a vein that goes into the heart.  This allows blood draws and medication to be dispensed without sticking needles in him all the time.  Although they are semi-high maintenance items and need to be flushed every day they are not used and the bandage to the entrace into the skin changed every week.  Xander HATES when people even touch them.

We just checked in on him and he was fussy and moving all hands and feet. The neurosurgeon was very happy about that. An MRI will take place tomorrow to determine if all the tumour has indeed been removed.

Xander had a cough that was starting before the actual surgery and it does not seem to be any worse.  The neurosurgeons did not think it would impede his recovery since he was not running a fever.

During these chaotic times we would like to thank all friends and family that have been so supportive, even through your silent wishes. We would especially like to thank the Grandparents who made thier way out to make sure the parents were being taken care of as well. The wishes of friends of friends and friends of family unknown to us has been very heartening. The positive energy poured into one little soul has been very touching and very well received - the results can attest to this.

We will keep everybody updated as best we can. We still have a long road ahead with chemotherapy. Luckily we are going to one of the premier facilities in North America to deal with this affliction.

Thank you all again for all your concern and help. Please keep it up as it bouys our spirits in these troubled times.