This was not a simulation.  Xander went in early this morning for his first actual Radiation Treatment.

We all went in today for his first treatment.  It went very well. Only 24 more to go...

We went over our concerns with the RN about the sedation and recovery procedures and had them modified to be more like Children's.  The sedation went much more smoothly.  They performed another alignment and then administered the 5,000 Cgy daily dosage. The recovery was still a little sketchy.  He gets so upset and nothing calms him down until we leave.  On the good side, with him being so upset he does get discharged faster.

Other than him being upset there are no other side effects so far. The RN indicated that it will take about 2 weeks before the additive effects of the radiation manifest itself in side effects.

One nice item was that we were queried by one of the Child Life Specialists about the recovery rooms that are currently being constructed in what we had found that has worked in the rooms we have been in.  She was very prepared and most all of our suggestions were already incorporated.  The rooms should be quite nice when they're finished.

Tomorrow we meet with Dr. Avellino to go over Xander's progress and see the films from the MRI.  We also have to bring up that he has started an echo on some words. Now, sometimes, when he says "Milk" it's "Milk-k".  We're not sure if he's trying something new, or if this is a side effect.  He can say the words without the echo so we're fairly positive he's just trying new stuff out with words.  We will check, just in case.  He has also been fairly clumsy as of late as has been tripping more often.

Lisa also has an OB appointment tomorrow.  Get to see how the little one is doing.  Then Thurs we have a focus group that Children's put together with Oncology families to go over any concerns we may have and any improvements we think they can make.  We're pretty happy that Children's has put this together to help improve the families experience when going through the treatments.  Any little bit helps.

Finally, Lisa went to our previous pediatrician's office and signed a release for Xander's paperwork so we can transfer his care to a new pediatrician.  We interviewed some pediatricians and believe we've found someone who is more compatible with our personalities and has the skills necessary to help Xander in the future.  That was a mistake we make when we selected Xander's first pediatrician, we had went on faith of the medical professions evaluations of their own and were unsatisfied in the end.  If you are having a child, or are unsatisfied with your current care provider interview replacements.  You have to find a person who is compatible, has the necessary training and experience to deal with a wide variety of concerns, treats your child as a person, and will listen to the people who know the child the best - the parents.

Xander went in to Children's yesterday to have a sedated MRI done to check his progress.

We went in to Children's and down to the Surgery check in counter.  Since he has to be sedated for the hour-long MRI procedure (just pictures, but he has to be still), we have to go to surgery so he can get his sedation.

We arrived right on time and were told that everything was going according to schedule.  But two hours later with a cranky child, since he had not been able to eat or drink since 5:30 in the morning, we were getting pretty upset.  Why bother making it to your appointments on time when you always have to wait.  It is annoying.  The lesson learned: ALWAYS schedule sedated procedures for EARLY in the morning.   That is specifically why children are always scheduled early in the morning for radiation treatment - because they have to be sedated.

Well, we finally got int here and Xander got his sedation.  It was so much easier then at UofW.  It is very noticeable when the staff has a pediatric background.  Then, they whisked him off to get his MRI done.

Mom and Dad went to the cafeteria to get some well-deserved lunch and pick up a snack for Xander for when he woke up.  Just as we got back to the Surgery waiting room we were beeped.  This is another thing UofW should have for parents who are waiting for their children - very convienent.

Then we headed down to secondary surgical recovery and waited for Xander.  We had warned the staff repeatedly that he needed to be wake up with us present.  They have a primary general recovery area that is open and parents cannot be admitted.  But they got him to us just as he was starting to complain so it was good timing.  He then scarfed down a bag of chips and a package of juice and we were off after talking to Dr. Avellino on the phone.  They were just reviewing the MRI and everything looked good.  They will contact us if anything additional comes up.

Well, now we have a good baseline to compare the effects of radiation to the tumour site.  He starts radiation on Tuesday.  Should be the start of a busy week.

Today Xander, Baba and Dad went in for Xander's radiation simulation.  Mom stayed home since she had a cold and someone had to wait for the carpet installers.

Early this morning we woke Xander up and headed out to the University of Washington Medical Center, in his pajamas.  We thought the traffic would be bad, as usual, but it was pretty free flowing and we got to the Cancer Center 1/2 hour early.

After waiting for the front desk to open, and we were registered, we went back into the recovery area where we went over the intinerary with the nurse.  First take him into the room with the CT scanner and give him his sedation.  Then they will put a breathing mask over his mouth.  This will help maintain his sedation until they want him to wake up and provide any breathing support if he should need some.  Then he gets his mask fitted.  He needs the breathing mask here since they cover his face with the soft mask material before it hardens.  They also have to tape his eyes shut so that his eyes do not dehydrate.  Then they perform a CT Scan so they can map out the areas to irradiate and then perform a mock radiation treatment where they take pictures to make sure they are aligned properly.  Then they start to revive him and bring him back to the recovery room when he is awake, but still unaware of his surroundings.  Then he stays there until he can convince the nurse that he is awake, can eat, drink, and stand on his own.

So we took the little man back to the treatment room and he started getting a little nervous since it was very medicinal with many implements and a crowd of anesthesiologists and support staff around him.  Next time we have to get the staff to hang back and make sure Baba gets to have a seat and then just have an anesthesiologist come in and interact with him and inject the sedation into the Hickman line.  Itis amazingly fast acting, as Dad was explaining to Baba to hold his head because he was going to go limp - he went limp.   We need some of this stuff for home!  It is also amazing to Dad how often you have to be an advocate for your child in these situations.  The parents know the child's preferences while the staff sometimes only think of the procedure.  Then Baba put him on the table and they covered his mouth with a little breathing mask.  He looked so small on the large table.  Then we went to sit in the waiting room until they called us back to the recovery room.

In about 40 minutes they were done and we were back in the recovery room where we started.  They brought him in and he was just coming out of the sedation.  They timed it perfectly.  But Xander was still pretty upset and just wanted something to drink so we gave him some juice and he was good for a while.  Then he started getting very upset.  Dad thinks it is because he finally started to get a good look around at the recovery room which looks a lot like the rooms where he gets his NG tube installed at Children's, needless to say they are not pleasant memories. So after signing yet another consent form and listening to possible side effects of sedation, and radiation we got out of the room and it was like a light switch clicked off as all the crying stopped.

Some possible side effects of the sedation are nausea, but we stop his Pediasure at 2:00 in the morning so there is little in his stomach.  The main problem is that if he vomits while he is on his back he may get fluid in his lungs and then they would have to suck it out.  There is also potential unsteadiness afterwards, but Xander was very awake, alert and showed no adverse effects.

Other radiation side effects were fatigue and skin rash in the short term. Although the doctor indicated the rash may not be a problem for Xander.  Long term is, of course, the reduction of IQ since the radiation will mess with areas of the brain that deal with multi-tasking and complex planning.  We will have to see.  Hopefully increased activity and training from the Psychologist and Occupational Therapy will help.  Then there is the Pituitary glands and possible imbalances in his hormone levels for growth.  Finally, the possibility of cataract development in his right eye since the radiation area is close.

So it was an interesting visit.  It was too bad he was so upset in the recovery, but it is just a temporary recovery area until the new one is finished construction.  Plus he will learn that there are no "owies", just nap and a wake up. 

The actual radiation therapy should start Tuesday and go for about 5 weeks.

Xander went in today, hopefully for the last time for a while, to get his labs done and a NG tube installed.  He also has a busy week lined up next week.

It was a fairly uneventful week. Tuesday Xander went back in and received both blood and platelet transfusions.  Then Tuesday night he decided to cough up his NG tube - just out of the blue.  So we left it out until today in the hope he may catch back on to eating.  He ate a bit more than usual, but not enough to sustain him.  So today he had yet another NG tube installed.

We had been in a bit of a quandary since we wanted to get Xander's second year pictures done but did not want them done with the NG tube.  Luckily he took care of that for us and went in on Wednesday and got some really nice pictures taken.  He looks like such a boy.  We will be posting them on PhotoCat soon.

It was Baba's birthday on Wednesday as well and we had a small celebration and went out for supper.

Next week is a busy week.  Tuesday we go to the University of Washington Medical Center and go through his Radiation Simulation.  There he will be sedated and then have a mask made of his face.  The mask will make sure that no extraneous radiation will affect parts of his head that do not need it.  Then we go for a CT Scan so they can map out where they will be applying the radiation fields.  Then finally a test run where they take some photos to make sure that they have everything aligned properly.  Then we will be cleared for radiation therapy, probably the week after.

Then on Thursday we go in for an MRI and potentially a B.A.E.R (brainstem auditory evoked response) test for his hearing, at Children's.  Since he has to get sedated for the MRI (because he has to be still for about an hour), we thought it would be a good time to get a definitive hearing test done on him.  The BAER test also requires Xander to be sedated since they induce a sound and measure the response.  So the Xander has to be sedated so he will not move and influence the results.  Well, since he will be under for so long he will need anesthesia instead of sedation and a breathing tube.  So oncology, and neurology, are still waffling on whether they want to go that far.

In the meantime we will enjoy a nice sunny Northwest weekend and hopefully get some chores done in, and around, the house.  There is always something to do.

Plus tonight we go over to Paul & Carol's for a nice supper with the Canadians.  Should be fun as usual.

Xander went in today to get his blood transfusion.  It was exciting.  He also had a great birthday party yesterday with his friends.

So Xander went in to Children's today to get his blood transfusion.  His ANC is up to 2000 and his hemocrit and platelets were getting low.  So the nurse set him up with some blood.  It takes around 4 hours for a transfusion and Xander seemingly did not want to wait that long.  30 minutes into the procedure he was playing with his Hickman line and unhooked the blood line!  The line snaked over the bed and then all over Baba's pants.  Then when the nurse was changing out the lines more got on Mom's shirt.  So that was a bust and they all went home to clean up, launder & take a nap.  We will retry tomorrow, this time with some platelets thrown in for size - and tape.

We had a great time yesterday for Xander's Birthday Party.  It was nice since he was interacting with the group more and went outside to show off his fan powered bubble maker Mom had bought him.  Perfect bubbles, every time, at the flick of a button.  We were to have it at the park but it was a bit of a blustery day so we headed home.  Everyone was very glad to see him and he received way too many presents.  He got to show off his candle blowing skills a few more times as well.  Thank you for all your generousity, both from here and back in Canada!

We were sorry that we were unable to see Megan, Scott & Abby, Linda, Nathan & Emma since they were all feeling sick.  We will see you all soon.

Mom went in for her bi-weekly OB appointment today and everything is looking great.

Finally, our friends Ted and Susan said hello to their newborn baby girl Grace Elaine over the weekend.  She's a real cutie.  We waited for what seemed forever for her to arrive even though she was right on time.

Xander went in today to get his labs done and a new NG tube installed, as well as his weekly vincristine shot.

His ANC is now up to 602, so the birthday party on the weekend is a go!  His other counts have decreased a bit so he will probably get a transfusion on Monday when he returns for his next check up.  He will also have to receive his G-CSF shots until then as well.  Too bad, because we were supposed to have been done yesterday.

In that vein (get it?) we called the drug company the insurance company uses to talk about the syringes they shipped with the G-CSF.  Children's gave us these great hair thin needles that have a pen like safety clip that locks in over the need after you're done with it.  The needles we receieved from the drug company were very coarse and only had a replaceable cap.  They were so thick that it took noticeable force (especially to Xander) to break the skin.  They also left bruises.  So we asked them to get us something more fine and safe the next time they deliver.  Which should not be for 7-8 weeks.

Xander also had to get some cream for redness on his bottom due to the diarrhea he has been having.  Since all he has been getting for food is the regular pediasure (no extra fibre) it is probably due to fall out from the chemotherapy. 

We have to keep up on his feedings more often as well since he had lost around 4 oz since the last check up.  We would love to see him eat more by mouth and stop the feeding tube altogether.

So we finally had our visit with the radiologist today.  We asked a bunch of questions and received a bunch of answers.  It was a bit like getting cold water thrown on you since the radiologist was very truthful about Xander's condition and how tenuous the next few months/years will be.  We were definitely getting too comfortable with how well he has been handling the chemotherapy.

Here are some of the questions and answers from the interview, the answers are Dad's interpretation:
Q: What is the goal for this phase of treatment?
A: To try to disrupt the growth of the tumour cells and kill the cancer.
Q: What type of radiation will Xander get? Why? Are there any 'better' treatment?
A: We will be using the PBCT protocol. It will be X-ray fractional 3D conformal. This is the best bet for this tumour, considering it's considerable size.
Q: Would hyperfractionated dosing be of any advantage?
A: We don't think it does.
Q: What treatments does UofW offer?
A: A full selection.
Q: Why UofW and not a different facility, even out of state?
A: Maybe Proton Radiation at Boston, but probably would not help much.
Q: What will the location of the radiation be? How exactly is this determined?
A: Start w/ pre surgery field & shrink to post surgical. Determined via MRIs and CTs.
Q: What dosage will he be getting?
A: 5000 Cgy
Q: Will he require another spinal tap before radiation? After?
A: No.
Q: How much experience does UofW have in administering the treatment to pediatric patients?
A: 120 pediatric cases /yr
Q: How will he be positioned on the table?
A: On his back. He will also have a lead body cover.
Q: Will he be restrained?
A: No restraint, but the mask is attached to table.
Q: Will anesthesia or sedation be used? Will there be a pediatric anestheologist present? Will we be present?
A: Propofol, Gas Mask & Zofran.  Not pediatric, but rotate through Children's. Yes.
Q: How long will each treatment be? What is a typical itinerary be? Are we able to view the procedure? Will the same staff be present?
A: Early morning, 30min-1hr. No. Generally.
Q: We will be allowed to wake up with Xander.
A: Yes. In Recovery Room with a nurse present.
Q: What are the possible short, and long, term side effects? Other cancers? What about in combination with his chemo & stem cell treatments?
A: Short: Fatigue.  Nausea.
Long: Neurocognative -30/40 IQ points. Short term memory. 70% chance of hormone deficiencies because of Pituitary Glands. Non-uniform skull bone growth becuase most readiation done on right side. No hair growth at entry site.
Q: Will you be present?
A: An attending, a RN & a resident, plus the technicians
Q: How often will we meet to discuss Xander's progress?
A: See him every Thursday.
Q: What other outpatient visits will be necessary while on radiation therapy?
A: Labs, will co-ordinate with Children's. MRI after.

If anybod has any other questions please e-mail Dad and he will ask.

Xander also goes in for his labs tomorrow so we'll see if his counts will jump back up for the weekend and his outdoor birthday party.  We'll be cutting it pretty close.

He should finish his G-CSF shots tonight and should not have to have them for another 7 weeks!  He will love that.

Dad went for his first ever blood donation today.  When you see the need it is easy to give.

Xander also coughed up his NG tube during the evening.  He has had what is call 'chemo cough' for the last few weeks which is a ton of mucus build up due to the linings of the throat, nose and mouth all weakening.  He had so much built up that he coughed it all up and the tube went with it.  I guess we'll get a new one in tomorrow during his visit.

Xander went in again today to get his blood counts checked and see where he is at after his previous chemotherapy session.

The last visit, on Friday, his hemocrit and platelets were starting to edge down, but his ANC was up.  This time his hemocrit was down a bit more, but his platelets were way down and his ANC has bottomed out at 0.  So Children's ordered him up some platelets and he will get a transfusion before he goes home.

He had a great small birthday party at home yesterday, yes that's right - at home.  His temperature stabalised during the day under 37.4C and he was in good spirits.

He did  a great job of blowing out his two candles - all by himself.  Must have been all the practise he got at Steve and Etel's during Easter.

Then he started opening presents, he had more than a few to open, although he only got through about half of them.  This may be an all week excersize.  Mom, (not Dad), Baba, Gege, Grandma & Grumpa, and his friends, have all been too generous.

Part of the problem is getting his attention away from Buzz Lightyear for more than a second since he's been watching Toy Story I & II over and over and over...

He also had a good sleep last night. Staying up a bit after bath time probably helped a bit to tire him out.  Although he did wake up pretty cranky since his system had run down over the evening.