too long between posts - so much to tell....

I would like to apologize - I didn't realize how long it has been.  This week went by so quickly; since arriving home on Monday night we have had a piano recital, a Christmas Concert, a staff party and a LOT of homework! 
Monday was the best day Noah has had in a long time, not in terms of treatment, but in fun.  Many of you may have already seen the photos from the Canucks website, but I'll post them anyway (and a few more later).

Brittany's mom, Shawna met Daniel Sedin at Safeway last week and he let slip that he and his brother were going to be at the hospital on Monday, so we were pretty excited, thinking we might get to meet them and add their autographs to Dan Hamhuis' on Noah's jersey.  We made sure to bring it and a sharpie to Noah's appointment so in case we saw them we would be ready.  Well, it turned out the entire team came to the hospital!  We went up to 3B (the oncology ward) and right away we met the first group, which consisted of Daniel and Henrik Sedin, Mason Raymond, Jannik Hansen and some others I can't remember.  Noah was wearing his Oilers hat, so he took quite a bit of ribbing, but it got worse when Daniel Sedin found his Oilers scarf in his backpack too!  It was so hilarious - I think he had forgotten it was in there; we had been packing to go home that afternoon and he threw a bunch of stuff into his backpack, including his Oilers scarf.  We left that group, and the first thing he said was, "Mom! Why didn't you close my backpack?!?"  LOL. 

The next thing that happened was so surprising I didn't take any pics of that group at all: Kevin Bieksa walked up to Noah and said, "What is this... an Oilers hat!!!" And with that he proceeded to pretend to put Noah into a headlock and punch him, then grabbed him by the shoulders and pretended to knee him in the stomach.  So. Funny.
After that we met up with Dan Hamhuis, and he was so awesome - he introduced Noah to everyone and  made sure he got their autographs.  Noah was so happy, even though every one of them teased him about his hat. (that may have even had something to do with it : )  Actually, Roberto Luongo didn't tease him; he told Noah that he really loved the Oilers when he was a kid too.  It was great.  Finn, the Orca Whale mascot was there too and I took a lot of photos of them together.  Finn ate Noah's hat and bit his head, which was a highlight of the afternoon. Noah says that if you're bald, it kinda hurts, lol!  The Canucks photographer  took a lot of photos of Dan and Noah with his Canucks jersey on (and no Oilers hat). It was so cool.  He ended up with every single Canuck's autograph both on their hockey cards and on his jersey.  Pretty awesome....  Thanks Dan.  You made his day (week, month, year...). 

Our flight that evening was delayed two hours and then it was the most turbulent flight I have ever experienced; everyone was silently holding on to the seat in front of them with a white-knuckle grip.  :S   
It felt like forever, and I felt so ill when we finally landed... Yuck.  I hope we never have that again...

On Wednesday night our girls had their piano recital. I am so happy that we could be home for that, we missed the last one.  They did so well!  Miranda played a duet with her best friend, and they were so proud of getting through with no mistakes! It was awesome! Emily played in a quartet, which amazes me - four people playing on the same piano... crazy.  Also great.  And Alyson also did very well. She was happy that she was the second person to play, so she could get it over with. : ) I totally understand. 

Thursday Noah received the laptop that he qualified for under the Special Education Technology program.  He can download his textbooks so we don't have to carry so many books with us when we go to Vancouver, and he can do his projects and research, etc on it.  It is very nice, and quite small, so it will be easy to transport.  He is very pleased, and has already done some work setting up a power point presentation using custom animation. It makes me dizzy, but he likes it....

Friday was the Christmas Concert. Noah picked up the trumpet very quickly in September so he was fairly well prepared to rejoin the band for the concert.  Having VOD affected his lung capacity, so he had to practice a lot this week to be able to play an entire song, but he did great!

Here is the trumpet section of the band.  They were awesome.  So loud! 

We have had a crazy week what with practices, birthday parties, playdates, but there is no place I'd rather be!  It is good to be home.

We will have to go back to Vancouver on Thursday for treatment, just for the day. Then, however, we will go our separate ways: Noah will go home and I will fly to Edmonton to meet my new nephew and see all the family there.  I am very excited; it all came together quite suddenly this afternoon. 
Also a huge thank you to Pharmasave Smithers for their wonderful gift to us (and the delicious baking...).
Actually, we have received a lot of baking this week, thank you to all of you who continue to feed us and fill our freezer with treats! (I will have a hard time staying away...)

Brittany is doing great!

The surgery was about 7 hrs long, and they kept her asleep until this morning. They wanted her to "sleep" more because she started to get a bit of a fever and the right side of her heart wasn't as strong as they wanted it to be.  They got all that figured out, I guess, because they woke her up today and this evening they removed the chest tubes and the breathing tube!  I hear that is early, so that is very positive. Her family is hoping that she can be moved from St. Paul's hospital back to Children's soon, because St. Paul's isn't set up as well for families as Children's is, and the parking is crazy - today it cost tehm $23.50 to park there!  Hospital parking is just ridiculous. And yes, it should be free.  Or at least they shouldn't be so quick to hand out tickets.
Anyway, they expect her to be in the hospital for about 10 days to two weeks, then she has to be here at RMH for about three months before she can go home. Pretty cool that hearts can be transplanted...
They deduced from things the Dr. said that the donor was a young male and somehow through the magic of google they found a 20 yr old guy who died in Edmonton.  They don't know for sure if it was his heart, but if it is, they are very thankful and would love to meet the family. The whole thing is just so fascinating to me....
Noah and I are fine, we went to the clinic this morning for his last shots of this round, which went well.  He puts EMLA on his legs 2 hrs before we go to clinic to numb his skin so he can't feel anything - he prefers it to be on for at least 2 hrs, but less than 3. If it is on for more than 3 hrs, it starts to irritate your skin, and it kinda loses its effectiveness.  Every time we went this week, the EMLA was on for at least 3 hrs, because they were busy, or the bloodwork had to happen upstairs in the lab, instead of the clinic, etc, so he has been kind of worried every time.  This morning was the first time he said ow, but he still considered it to have gone well, so that is good. if he says it was fine, I will take it, even though it didn't look like it went well to me.  I mean, he was brave, he didn't cry or freak out, so that is good, but he was saying it was hurting while the drug went into his legs.  He did relax when it was all over, and then I could see how tense he was.  He is amazing - he rarely complains about anything.... so brave!
This afternoon we did some special schooling, I mean, we went on our 2nd field trip to the Museum of Anthropology at UBC. It is such a cool place.  I would go back every day - there is so much to see there.  We ended up having a personal guided tour of the Northwest Coast exhibit, so that was really awesome. 
Ok, I am trying to type and I am yawning so much my eyes are watering and I can't see anymore. 
Tomorrow the Green Men are coming back here with some huge penguins (Happy Feet characters), the house is getting decorated on Sunday and  we have heard a rumour that some of the Canucks are going to be at he hospital on Monday, so there is a lot to look forward to in the next couple of days.... I'll keep you posted!

Staying a few more days...

This week has been fairly uneventful, which is good for Noah, but bad for all you 2000 action-seeking people who checked the blog since I wrote last... (or maybe it is just my mom and my grandma checking 1000 times each, lol) We did get some surprise tickets to the Canucks game last night so that was fun.  Thank you Joann Malhotra, we had a hoot, and the seats were great (row 11!)!  We also had a bit of a Grey Cup party here at RMH: we invited my cousin Meagan and her boyfriend, Darren to come and watch it on the big TV here and we had pizza and other yummy food. It was a lot of fun, AND the home team won - much to Noah's chagrin.  Yes, he was cheering for Winnipeg. Not just to be contrary, he has actually been following them and cheering for them all season, and he was very happy they had made it to the Grey Cup.  He had to explain that a lot last week; people thought that he was just doing it to be difficult, lol!  He even has a Blue Bomber that my dad built for him. It is pretty sweet, all blue and gold, with big missile launchers under the wings....
But the best thing that happened this week happened today. Brittany is a 13 yr old girl staying at RMH with her family who has been waiting for a heart transplant for 8 months and in the interim has had a very cool machine called an L-VAD put in place. It is a machine that pumps her blood for her - she has been carrying her "heart" around in a little bag for the last few months... technology is so amazing!  Anyway she received word this afternoon that a heart has become available! She went to the hospital to be prepped for surgery and to have her first round of anti-rejection drugs, etc, today and is just waiting for the heart to arrive.  She goes in at 5 am.  They expect the surgery to be around 9 hrs, so please pray for the surgery to go well and that her body would not reject this heart.  Please pray for her family, who are dealing with a lot of different emotions right now and are feeling a bit strange, as you may imagine.  Please pray for the donor family as well- they must be going through a very tough time right now, though we are thankful they decided to donate their loved one's organs; many lives are being changed as a result of this person's death.  I will let you all know how it turns out.  Her recovery will be about 2 wks in the hospital and then 3 months here at RMH before she can go home to Oliver.
Speaking of going home, originally, we were going to be going home on Friday, but now it looks like we will be staying until Monday evening.  Dr. Davis would like to get started on Interim Maintenance II, since Noah's counts are high enough to get going and we are here anyway.  It begins with an LP and then VinCRIStine and Methotrexate on Monday, then we can go home!  We will be home to see piano recitals, band concerts, and lots of other things, too.  : )
We found out today what the next few months are going to look like in terms of chemo.  Dr. Davis printed off a calendar of December and January and we tried to map out Noah's treatments and when and where they will happen. The next phase of treatment is similar to what he did in the summer, where he had to go in every 14 days. This one he has to have treatment every 10 days in December and January, with 2 rounds of the Erwinia injections - one in each month.  Since Erwinia is the reason we are here right now, Dr. Davis has decided to skip the next round of injections, which would begin on Tuesday, and just do the one later on.  The reason we are debating where to do this is that the drugs he would be getting are ones the chemo nurses administer frequently to adults in Smithers and they would both be done in less than an hour, so it seems sort of silly to travel to Vancouver for that.  He has also had them both many times with no serious adverse reactions besides mouth sores, and now we know how to prevent those.
The GP-O doctors are not all convinced that it is a good idea to treat him anywhere but at Children's, but Dr. Davis is kind of pushing for it for the next treatment in Dec, one in January, and also for some of his treatments during Maintenance, which will begin in April.  Apparently he has been in discussion with Drs. Hart (not in agreement) and Moisey (willing to at least look into the idea) about having treatments in Smithers. Tom and I are of two minds about this. It would be nice to be home for a longer period of time in Dec., but we kinda like the idea of staying where they know Noah and he feels comfortable being treated. And we would only be gone a couple of days at the most.... I don't know what to think... we'll have to see what happens.   On a related note---
Some big news - we have received some funding from the Commmunity Cancer Care Team and HawkAir for flights!!!  I don't know if I wrote about this or not, but yes, they are teaming up to provide flights for us for the next while at least.  A HUGE thank you to those of you who have donated Airmiles to us - it has been such a blessing to have your support.  Now you can save them for a cruise or something...

It is now well past my bedtime.  I must bid you adieu (to yieu and yieu and yieu...) and ask you again to continue to lift us up and also to pray for Brittany and her family and the doctors and .... Thank you Lord that you hear our prayers!