Xander went in today for a set of labs to see how he is recovering.

The results were impressive: Hemocrit was 26.2, Platelets was 66,000 and ANC was a whopping 30,000.  Luckily we can stop his GCS-F shots for the time being, until his next round.

Which will probably start Monday. It will be August Long Weekend in Canada, but it's business as usual down here.

We had also asked the RN about an observation Baba had made on every so often, while watching his DVDs, Xander will shake his head and then do a small eye flutter.  We're wondering if perhaps there is some impairment happening like cataracts, which were a possibility.  The RN is checking it out and we'll see if there is some testing we can do.  Kind of hard to have him read an eye chart when he doesn't know the entire alphabet yet.

We also have to watch his mouth in that his gums seem to be getting a bit red.  We do not want mouth sores which the Thiotepa can bring about.

Next lab on Thursday and then spend a nice quite weekend at home getting ready for another busy week ahead.

Xander went in today to get more labs and a platelet transfusion.

We actually went in yesterday by mistake and got a set of labs done, and his weight.  He was 13.4kg (29.5lbs), which is not too bad.  If he goes below 29lbs then we'll have to see about an NG tube.

The laboratory was very busy yesterday and we had an anxious wait in the Hem/Onc waiting room.  With Xander's ANC at 0 any interaction with people, especially kids can result in an infection.  Although he was having a ton of fun with three of the volunteers, playing cars, dinosaurs, and blocks, as well as colouring.  After an hour and a half Xander was getting tired and so was Dad and Auntie Pat so we asked the staff to phone us with the results and if he needed a transfusion or not.  Halfway home we got the call that he would probably need platelets so they would order them for Friday.  Next time I think we'll just do what we did on Tuesday and head home irregardless, that way lessen the chance for possible infection and speed up getting home.  There's always that 50/50 chance we'll head back for a transfusion, but we'll take the isolation over the convenience.

We did have to pick up some Codine for him to do some pain management since he has been waking up during the night at times and whining as if in pain.  This happens a few times a night so we talked it over with the RN and she prescribed the Codine which will not put down a fever like Tylenol, our golden standard for pain control.  This may be due to the GCS-F which can give you an ache in your bones while it stirs up production.  We gave him some Codine before bedtime and he seemed much better during the night.

So this morning we all got up and headed over to Children's for the platelets.  They were running pretty much on time so we were in for only an hour and a half with labs, platelet transfusion, discussing issues with the RN and going over the nutritional game plan with the Nutritionist.

We were out in plenty of time to get Auntie Pat to the bus stop so she could head to the airport and catch her flight back.  It was great having her here.  It was definitely no vacation, but she said she really enjoyed her time here.  It now feels a little odd with only the immediate family at home.  Although Baba will be back tomorrow to fill in the the gap.

We just got a phone call with Xander's latest CBC results; his HCT is now 28.2 and recovering, his platelets were 25,000 before the transfusion, and his ANC is now up to 91.  With that we'll probably go back for labs on Tuesday, so a few more days of GCS-F shots, but after Tuesday he should be around 900 or so.  Then it looks like we will be back in the Monday after to start round 5.

So here we are at home watching another DVD (or as Xander says, "D").  He's getting really good at the remote.  We just leave it on the table and he restarts his own, or asks us to change the DVD and then starts the new one himself.  Luckily he's weaning himself off of Toy Story ("Buzz"), and been watching more Sesame Street Alphabet Jungle ("Elmo") or his Baby Einstein movies, for which we're grateful, the more variety the better.  Then it's nap time and some much needed rest.

So the entries have been getting farther in between just because, luckily, there has been less to report on.  Next update, probably, on Tuesday.

Xander went in for his first post chemo lab today.

His ANC is now officially 0, but his hemocrit is good at 33.1 and his platelets are great at 103,000.

He is in good spirits and his temp is good so we're just trying to keep doing what we've been doing.

Anti-nausea meds are now down to just Zofran in the morning.  No more midnight wake-ups to give meds.

Next lab visit will be Thursday.

It was a nice hot day, and a pretty good day for everyone.

Xander showed no signs of being stopped today.  He was non-stop activity.  He had one nap but besides that was go, go, go.

Great Auntie Pat was baking up a storm and made a cherry pie (with some of the frozen cherries from the Yakima trip), as well as yet more cleaning and her fair share of Xander and Willem time.

Mom went up town and did some running around, and Dad was able to get to some small home repairs.

Late in the day Paul and Carol phoned and asked if it was all right to come over to see Xander.  Since Xander was in such good spirits we could see no reason why not.  When they got here Xander was playing the big ham and was being very silly.  He and would take Paul's hand and do his now familiar, "c'mere" and they were off.  We then chowed down on some fresh cherry pie and ice cream and they were off.

Then it was bath time, a bit of movie ("Moo-ie") time and then bedtime. 

We started reducing the anti-nausea meds since they do not seem to be needed.  We took Larazepam off the list today and hopefully Benedryl tomorrow.  Then we will start spacing the remaining out slowly so that he's just taking them 8 hours apart instead of 4.

His appetite is still really good and he should be at least maintaining his weight.   We just pile on whatever he's eating in any quantity for breakfast, lunch and supper.  His current favourites are ham, hot dogs, grapes, McDonald's Cheeseburger meals and, of course, milk.  We've been trying to get him more clear liquids since it is so hot and he sweats like crazy when he's sleeping.

He had three amazingly full diapers yesterday so we do not have to give him any Miralax.  The drugs do seem to be slowing down production this time around.  Last time it was diarreha.  You just never jnow how it is going to go until you're in it.

We got a call from Baba and she's done running around to her various appointments and had a get together with family yesterday.  She's missing being out here, but that will come soon enough.

Today Xander went in for his stem cell recovery, a seemingly simple and interesting process.

Everyone got up even earlier today and headed over to Children's.  We had to be at Children's at 8:00 to get labs done and start his hydration and pre-meds.  His blood counts are all stable, even his hemocrit did not decline further, his counts should drop 5-7 days after we started, so during/after the weekend we should see a decline.

Then at noon the lady from SCCA came over with Xander's frozen stem cells.  10,000,000 stem cells in a small flat pack.  Red in colour because of the preservative.  The stem cells are partially thawed and then allowed to enter the bold still frozen, just fed by gravity because any mechanical help would just harm the cells.  The preservative started tickling the back of Xander's throat and he threw up once during the procedure, which is normal.  Some kids throw up non-stop for 30 minutes so we're thankful.  All-in-all it took 10 minutes and was fairly painless.  The one very noticable side effect of the preservative is the smell. We have heard reference to creamed corn, or clams, but to us it smells like corn husks left in the garbage over night - not pretty.  We can expect the smell for a few days while Xander trys to get the preservative out of his body.  Plus his urine may be red as he processes it and gets rid of it.  That would have freaked us out if the nurse had not mentioned it.

Now he is in for another 4 hours of hydration and then we head home for the evening.  We will be back for labs on Tuesday and start off a tense week.

Until then regular checks of temperature and heavy on the Purell and alcohol wipes to keep everybody and everything hyper clean.

Everyone had an awesome day today; Xander is seemingly ignoring the chemotherapy.

Xander has only thrown up once so far this round, it's amazing.  Then again he's getting anti-nausea meds every 4 hours.  Dexmethazone & Zofran every 8 hours and Larazepam & Benedryl every 8 hours offset by 4 hours from the previous dose.

You can tell the chemo is starting to take effect since he had 4 naps today.  Having one's bone marrow suppressed with the corresponsding reduction in red blood cells will do that to a person.  His hemocrit reading was already starting to edge down yesterday before chemo, so tomorrow we may be getting close to a red blood cell transfusion.

One very welcome change has been that his pseudomeningocele (the swelling on his head) has receeded totally.  So much so the skin is now actually depressed where the surgery took place.  This is the first time in 5 months his head has been this small.  We have waited a long time for this.

Xander went through his second day of consolidation therapy.

His day was much like yesterday.  We loaded him up with anti-nausea meds and Dad and Great Aunty Pat took him to Children's.  We went right into the infusion area and got set up.  He had some additional anti-nausea meds, hydration and then chemo.

Played some Nintendo, had a most welcome nap, have a few tantrums.  It would seem the dexamethazone, or maybe the lack of sleep was taking over today.  He was bi-polar for most of the day.  Watch a movie silently one minute and then flying off the handle the next.  Dad was getting a little ticked here and there.  Always one of the more difficult times is to figure out what is being a toddler, what is being sick, what is/are the side effects of medication(s).

With that we have a day off tomorrow and then back in for another full day for his stem cell recovery.

Back into the fray with Xander's 4th round of chemotherapy, which is the first round of his consolidation therapy.

Today Mom, Dad, Willem and Xander all took off to Children's fairly early in the morning.  Xander had his labs and his counts were all very good, he weighted in at 30.2 lbs, his first time over thirty since we started this ordeal. Xander then got checked out by the RN and we got assigned a room in the HEM/ONC clinic.  When the RN was checking out his ears we asked her about why he may be playing with his ears.  She explained that the ear canal lining starts looking like crumpled up wax paper, instead of shiny and smooth, because of the radiation.  The skin then starts to flake off and irritate the ear.

Being a Monday, and Xander's first consolidation therapy, things took a while to get rolling.  First some Zofran and Benedryl to help control nausea.  Then some hydration and finally the Carboplatin and Thiotepa.  This round is very intense chemotherapy.  The Thiotepa normally can only be giving in relatively small amounts because of how much it suppresses the immune system.  Usually it is only given in 50 relative units so that it does not suppress the immune system too long.  But with stem cell replacement they can give it at 900 relative units.  At that amount it decimates the immune system.  Great for getting rid of cancer cells, poor for recovering in a reasonable amount of time while being at risk for infection.  However, with the stem cell replacement we can expect his immune system to recover in 3-4 weeks.  Then once it recovers, back into the next round.

All the while today he ate and ate and drank non-stop.  We will see how long his appetite last before it is back to an NG tube and Pediasure. He only threw up once at home and was in incredible good spirits.  He did get some dexamethazone for nausea during the day which may explain why Dad is here at 11:30 in the evening watching The Fox and the Hound with him. 

The nice thing about the consolidation rounds is that they are all out patient, we go in the morning and get out in the afternoon. Day 2 for more chemo and then Day 4 for the stem cell recover, a relatively long day with lots of hydration and some expected intense nausea periods.

So far so good. We'll see how things progress tomorrow.