Xander is now officially a two year old!  He now has all the rights to assert his independence, stress limits to the edge, and say "No" thousands and thousands of times.

Hopefully it will be a quite and uneventful day.  However, he work up this morning coughing and spit up a bit.  He was also fairly warm and had a temperature of 37.88C.  Not a great way to start a birthday.

Well, it's checking temperatures every 1/2 hour until the temp goes down.  If it goes up, well, we may be spending his birthday in the oncology ward.

Either way it will be a small party with the immediate household.  Hopefully we will be able to celebrate with friends on the weekend, as long as his counts are up by then.  We will see.

We were having some trouble with Xander gagging and coughing and where thinking there was a problem with his NG (Nasal Gastric) Tube.  Since it was the weekend we had to go through Emergency to get things checked out.

Ever since we got out of the hospital we've been having trouble with Xander gagging and coughing and spitting up.  He had a new NG tube installed on Tuesday, just before he was discharged.  The first few days after chemo you have to attribute it to the chemo drugs and the nausea.  We were also giving him regalin and that has nausea as one of the side effects.  Plus we had stopped giving him prevacid, which is an antacid.  So we took him off of regalin and he still was having trouble when we fed him.  On Saturday Mom gave him a bolus feeding of pediasure via syringe down the NG tube and he started a steady coughing fit.  We checked his lungs and they seemed clear, then we injected some air down the NG tube and heard bubble in his stomach so the tube seemed properly positioned.  Meanwhile Mom was on the phone with Children's and they told us to come down and get an X-ray to check the location of the NG tube.  The NG tube was actually 3-4 cm shorter than previous tubes so we thought it would be short of his stomach.  Surprisingly it was past his stomach and into the intestines.  So we pulled the tube out one inch (which Xander did not appreciate).  That evening he slept, well, like a baby.  A nice deep sleep, with no gagging, nausea or anything.  Plus we were able to keep the feeding machine pumping all night.  Today we continued with the bolus feedings while he was off the machine and it worked out great.  He was free of the machine, but still was able to get his nourishment.

Another possibility brought up by the doctor in emergency was a stomach virus.  His stools had been mostly liquid.  So we left a sample with them for them to check (lucky them).  After getting the tube placement into the stomach his stools firmed up a bit.  We shall see next week if they could culture anything from the sample.

Mom and Baba headed out shopping (all day) while Dad and Xander stayed home, watched some baseball (Go Mariners!), got outside for a bit and enjoyed a nice, warm, sunny Northwestern day. 

We would like to thank Gennaro and his father-in-law for installing the closet organiser in the Baby's room.  Now Xander's and the Baby's room are both the same and nicely set-up.

Xander went in today to get his blood counts checked.

His counts were all good and his ANC was up to 5800, which is surprising.

He has been pretty good.  There has been a bit of nausea, but little vomiting.  We had to take him off of regalin (sp?) since he was having some pretty noticeable side effects: involuntary muscle movements in the limbs (he would be sleeping away and then jolt himself awake), sleeplessness and restlessness (Baba was up 4:00am the other night watching movies because Xander would not sleep).

He also finished off his keppra (for seizures) and prevacid (an antacid), but started to gag during the evening.  The RN told us to continue on with the prevacid to alleviate that problem.

Now that we have the meds figured out we should have more restful evenings.

His pseudomeningocele looks really good these days and seems to finally be receding.  We've been waiting a long time for his little head to return to normal.

We got the results back from the Occupational Therapist but they are suspect because of the way they score ability.  Since the therapist was unable to observe certain behaviours she is unable to score him on them.  But how do you make a toddler perform on demand?  At least every item she marked him down on, because of non-observation, we have observed ourselves.  But, maybe part of the test is performing in unfamiliar conditions??  Even still he was scored at around 23 months so we're in the ballpark.

Next appointment in on Tuesday to see where he is at.

Mom had went in for her b-weekly OB appointment and everything looked fine.  They did not performa cervix check at that time.  So Mom went to do some shopping and had a trickle down her leg.  She called Dad and they both went back to the OB to check this out.  The OB checked the fluid and it was not from the womb, so Mom was told to go home and take it easy for a few days.  Finally, she's listening to someones advice and putting her feet up.

Xander finisihed off his chemo yesterday afternoon and stayed the night for observation and hydration. He is home today after a visit to the Occupational Therapist.

He is doing extremely well this visit, for not wanting to be at the hospital.  He has had nausea following  that great first evening, but mostly when he gets upset.

He receieved a blood transfusion during the evening to bump up his red blood cell count.  Next blood test on Friday, plus another vincristine shot.  He had etoposide and cyclophosfamide the last two days, along with lasix and mesna for helping the kidneys out.  Plus the numerous anti-nausea medications.

Other than two more vincristine shots he will have no more chemotherapy for 9 to 10 weeks, from now.  We switch to radiation therapy mid May.  At the very least he will be older than two.  We're pretty interested in meeting with the Radioloigist and asking our numerous questions. 

He has had two shiny new NG tubes put in the last two days, one by Dad himself.  Pretty easy once you know the little tricks.  Plus Dad had seen them put in so many times that he got to see what is successful and what was not.  The main thing - be prepared so you can get things over with quickly when you have a frightened toddler on your hands.

Hopefully they will finish off the Occupational testing and get his physical and cognative baselines down.  It's pretty easy going since it is basically having him play and interpreting the results.

It will be nice to be home.  Hopefully we will not have to install another NG tube, but we will see.  Now it is watching him closely and trying everything in our power to prevent an infection.  Although, tonight we start back in with the G-CSF shots!

We wooudl like to thank Susan for bringing us yet another stunning meal even in her advanced stage of pregnancy,  She should be popping in another week or two!  Then she will have to slow down from her insane pace of studies at pre-law.

This morning went very well, he had recieved his cisplatin and slept through all of the diaper changes and getting his blood pressure and temperature checked.  No naeusa at all!  Amazing.  We overlapped dexamenthazone, benadryl and adivan to good effect.

Gege and Baba are staying with Dad, Mom & Xander at the hospital today.  Then we have to drive Gege to the bus stop so he can head up to take his flight back to Winnipeg.  It was a very nice Easter.

Tonight is etoposide and chyclophosfamide with more regular diaper changes.  Hopefully is goes as well as today.  We will see.

Well, Xander goes in today for his third round of chemotherapy.

He was a little cranky this morning, but cheered up a bit for Easter dinner at Steve & Etel's.  It was a wonderful time and reminiscent of a more normal lifetime.  It was very heartening.

Well, tonight is a urine test, then IV hydration, then vincristine, etoposide and the cisplatin along with the 1 hour diaper checks.

Xander went in to get his labs done and get the paperwork started for admission tomorrow.

His ANC went up to 1056 so that means we have a green light for chemotherapy tomorrow.  Platets at 186 (great), WBC at 3.1, and Hemocrit down to 21.3 so it looks like we will have a blood transfusion before we leave this time.

The insurance company came through and the claims have been resubmitted, now to monitor to see that they actually get processed correctly.  Dad even had to phone in on some of Mom's claims that were also denied.  Ever since we moved to the new plan (with the same company) we've had 3 times the call rate we've had before.  Hopefully it's getting smoothed out now.

Tonight Easter supper with the immediate family and tomorrow Easter Brunch with the Canadians before we head in to the hospital.

Xander went in again today for labs and a CT scan.

His Hickman line, which had been quite finicky before has been working much better.  We quit using a loop as a tension reducing mechanism and went to sort of a sine wave that is taped down to his chest and this seems to provide much better flow.

His ANC dipped slightly into the 500s, which is supposedly  normal when you finish your neupogen (G-CSF) shots, but he should be ready to go for Saturday, when he will actually start his chemotherapy.   The ward is still pretty busy and we were unable to reserve a spot for Friday, which is alright since it gives us time to have a small family Easter supper, on Friday, and an Easter dinner with our friends on Saturday before we go in.

His CT was reviewed by Dr. Avellino and his ventricles have reduced in size a bit which is encouraging. Plus there was a space in between his skull and the brain that has started to fill in as well.  His pseudomeningocele (swelling on his head) is still pretty much the same.  Dr. Avellino said it may take a while but it will go down and that the toddler skull is pretty soft and will mend in time.

So tomorrow we go see the Radiation Psycologist so that we can get informed and prepared for the potential side effects from radiation.  The meeting with the Radiologist is forthcoming.

Checked in with the insurance company and they're moving slowly to get his claims reprocessed.  Friday should be the day when everything is kosher.  Of course Children's will have to re-submit everything since only a handful are in the system.  The rest probably got dismissed out of hand.  We receieved some advice to call the State and our Senator and such to make sure these get taken care of.  We'll keep that as a next resort if the insurance company does not seem to be doing their job.