Xander went in to see his pediatrician for his two-year check up yesterday (he was a little late).

Xander and Willem headed in to the pediatrician yesterday for their two year and 4 month check ups respectively.  Xander was a little late in that he is two and a half now, but better late than never.  He was 38 inches tall (97th percentile) and 30 pounds (70th percentile for age, 50th percentile for height).  So he's not doing too badly, we just need to keep pumping the calories in.  We're picking up more tips as we go, although when the person you're trying to feed is a two year old it's a tough proposition at times.

Xander did not get any shots, he will not until three and a half years so we have to be careful with any sicknesses related to vaccinations.  We should be going in soon to Children's for his RSV and Flu vaccinations.

Today we saw the end of two long-standing events in Xander's treatments.

First Xander had got his Hickman line removed today.  It was a loooong day for a 5-minute procedure.

We got the call yesterday that Xander was scheduled for the minor surgery to remove his Hickman line. So we headed over to Surgery at 9:45 this morning.  No milk or food from 3:30 this morning and no clear fluids after 7:30.  Xander decided to wake up at 6:30 to prolong the agony a bit.  Actually Baba and Gege kept him hopping until we got him in the van to head over to the hospital.

But there was where things stalled we waited in the surgery waiting room for two hours.  Then a little bit in the surgery prep rooms.  Then we headed over to the induction room and stalled again.  Now this room is pretty intimidating and looks a lot like the rooms where he got his NG tubes put in, so his main goal at this point was doing anything to get out of the room.  He was not happy.

Finally our surgery nurse got us set up in a waiting room which had a TV so we kept him occupied until the Anesthesiologist came in to check Xander out and then, finally, the resident surgeon.  The Anesthesiologist was excellent and kept Xander engaged with questions, getting down to Xander's level to ask them.  Xander then followed the Anesthesiologist back to the induction room with out a fuss and once again knocked himself out with Provofol.

Mom and Dad took their leave at that point, even though we had heard, several times, that we would be able to observe the procedure.  Even so, in about 15 minutes we were beeped and headed back to Phase II recovery to wait until he became awake enough from Phase I recovery.  Which took a little bit (about a hour) since this was Xander's regular nap time.  We had milk and a snack ready for him while he fully recovered consciousness and waited until the nurse came in to remove the IV from his wrist and discharge him.  Yep, now that we have no Hickman it will be the hard way to get blood and get IVs.  Mostly that will occur after they have sedated him, but it still leaves a mark.

Now all we have to do is take care of the exit wound from the Hickman; a small hole in the skin of his check just by his left shoulder.  The Teflon ring is still in his skin and may or may not be pushed out by his body

So now one less thing to worry about when Xander is running around and being two.

As Mom, Dad and Xander were headed to Children's Baba was getting ready to head back home with Gege.  It has been a great 8 months with Baba.  She was a great Grandma, Mother and Mother-in-law.  She helped Mom and Dad keep their sanity and gave Xander some great times to remember during all of the challenges he had to go through.  Luckily they left Great Grandma with us, who took care of Willem today, so that we can wean ourselves off of the extra help.  After next week it will be just the immediate family after a long eight and a half months.  But they will be back in December, just in time for Xander's next MRI.  We hope it is a good one.

Xander and Baba went in today for Xander's last blood test before getting his Hickman out.

One last time before we will have to start giving blood the hard way.  His results were fine; Hemocrit: 336, Platelets: 2071, WBC: 6.8 and ANC: 2172.

Now we're cleared to get his Hickman out.  That should be next week some time.  Surgery will call us a day or so before the actual procedure.

Xander's appetite is back with a vengeance.  He is now up to 32.3 lbs.

We also see the start of his hair returning.

Baba heads back home with Gege on Friday.  The end of an era.  The house will have a small hole in it until they return for Christmas.  Mom, Dad, Xander and Willem are going to have to start their own rhythms and routines.  Although Great Grandma will be with us for another week!

Xander had a successful swallow test today and is now cleared (by Children's) for sedated MRIs.

The swallow test was a piece of cake.  Well, cookie, actually.  We were so relieved to learn that this was far different than the Upper G.I. he endured in January.  All he had to do for the swallow test was sit on Mom's lap while he drank barium-laced milk, cookies and applesauce.  It took only a few minutes and the Speech Therapist was convinced that he would not aspirate if given sedation only.

Sadly this test was not even necessary.  Somewhere along the lines Xander's file had a 'difficulty swallowing' tag attached to it, thus the anesthesiologists were reluctant to sedate rather than anesthetise him.  Even through he had previously gone through 28 such sedation procedures at University of Washington for his radiation treatments.   It was a little frustrating, but having the test being so easy took some of the edge off of it.

We then headed up to Oncology for his last regular blood test.  We stopped in to see Erin and told her the good news and asked her to schedule an appointment to get his Hickman line removed.  They now perform the procedure in the Surgery Dept rather than the Oncology Clinic so that it is a little safer if something unexepected occurs.

We received a call later and all the counts were fine.

Xander and Mom had headed to Little Gym yesterday evening with some of his playgroup.  After a pensive beginning he got into the swing of things and did not want to leave.

Mom and Dad have started getting into a non-Baba routine since Baba will be heading home mid October.  It is kind of scary because now we're even; two of us (adults) and two of them (kids)!  Baba has been such a central fixture in the life and treatment of Xander that it will hard to imagine her not being here.  Although it is only for a short while since she will be back for Christmas!

Friday Sep 26th, Mom, Dad and Xander went in to Children's to: a) Get a blood test and stats, and b) have a meeting with the oncologist, RN, and nutritionist about the next stage in Xander's journey.

We got a minor check up performed, weight was a healthy 31.8lbs, and blood pressure and temp were good.

We then gathered with the oncology and nutrition folks and went over what to do next.  We go in for one more blood test this week, and then it is every MRI after that.  The blood tests mainly check his endocrine system to make sure his body is growing properly.  Two weeks after the blood test we go in to get the Hickman line out.

The main concern now is that Xander's immune system has been reset.  We will have to get his immunizations re-done in about 6 months.  But before that he will need a flu shot and will get an immunization for the RSV virus.  RSV can occur in patients who have had stem cell treatment so we are being proactive and cautious.  The main concern is still infections.

Now is when we have to start watching for the long term effects, like his endocrine system not producing enough, or learning disabilities, or infections, or, or ,or...

We will also be transitioning back to the pediatrician for primary care and to Children's for any cancer and treatment related concerns.

His height and weight were pretty much on track for his age.  His weight was at the 50th percentile, and his height was at the 95th percentile.  So we maintain the high calorie diet to get his weight up a bit more.  In that vein he has been doing tremendously well, both Saturday and Sunday he has been eating and snacking all day.  Even today (Monday) he had breakfast for about an hour eating cereal and milk, some fruit and then peanut butter and crackers.  This is much like how he ate before this whole ordeal started.

Mid week we get the pleasure of having another swallow test performed.  This is where they strap Xander into a device so they can rotate him, feed him strawberry flavoured barium and watch it flow through his system via an x-ray machine.  Xander did not appreciate the first one in January and we don't suspect he will be too pleased with this one.  However, if he does well then we can go to sedation for the MRIs rather than anesthesia, which will be much, much easier.

We were told today we have a normal two year old!

That is just about the best news you can have after several months of treatments and potential delays in development.

Mom took Xander in today for his Occupational Therapy assessment.  Right off the bat he was climbing stairs on his own, to get to some toys.  Test 1 - check.  Then the therapist was going to help him plug some coloured shapes into matching holes.  He dutifully pushed her hands away and did it himself.  Naming the colours as he went.  Tests 2 & 3 - check.  All in all he did so well that the therapist said, "Keep doing what you're doing at home, and we'll see him in six months".

This was much to our relief, but no real surprise since we could see that the side effects were thankfully minimal in his case.  She was very surprised that his gait was normal since he had received significant doses of vincristine which sometimes plays with the tendons tightening them up so the patients have to walk on their tiptoes.

We also got his lumbar puncture test back and it was clear.  Another small sigh of relief.

We have two more appointments this week, one for labs and then we meet with the RN and Oncologist to map out what we do now, do a post analysis and finally see the last MRI.

Xander and Mom headed into Children's today to get Xander's counts checked and ask the RN some questions.

His counts were good: Hemocrit: 28.1, Platelets: 140,000, WBC: 4.3, and ANC: 1032.

We were told that he could get his Hickman line out in about 4 weeks.  An interesting procedure.  They give him some provofol to sedate him.  Then they clear the teflon plug away from any skin and then - Yank!  They pull the line right out.  The vein closes in on itself and then we take care of the exit site.  No surgery at all.

We should be going in once a week until then and then a blood test every MRI after that.

Xander and Mom headed into Children's today to get labs and a hearing test done.

Xander's labs were great: Hemocrit: 29.1, Platelets: 73,000, White Blood Cell Count: 17.7, and ANC at 8,063.  He is holding his own.

The hearing test showed a further decline in his hearing, he is now having trouble with 'k' sounds.  If it gets any worse he may need a hearing aid.  We will be checking his hearing regularly to find out.

Mom also picked up some more Benedryl since Xander had some wicked coughing spells last night.  He was perfectly fine until he went to bed, odd.

Next appointment is probably his Occupational Therapy appointment near the end of the month.