Rollercoasters...

...more figurative than literal...
That was our weekend.
On Friday, Noah was so happy because Tom was coming to visit us on Saturday. We made friends with the contact person from an organization called Balding for Dollars, and learned about a good deal we could get at a Go-Karting place in Richmond. (The cars can go 70km/hr! I think my cousin told me about it earlier this summer - right Dayton and Debbie?) Anyway, Noah was pumped because Tom would love to do something like that with him. Then we got back to RMH and found out that someone had dropped off some tickets to the Canucks game on Saturday night worth $185!! Since there was only one pair, they decided to have a draw; everyone who wanted to go had to put their names in a jar and the weekend manager would draw the next morning to see who was going. Noah couldn't wait.(up...up...up...) Connie, the director, told us that Noah and I could each put our names in 4 times. So he quickly went about getting 8 pieces of paper and neatly printing our names on them. The whole time he was talking about how Tom had never been to a Canucks game and that it would be so cool to sit so close to the ice, and how much Tom was going to love it. That evening Tom called to tell us that even though he had a buddy pass, he wasn't likely to make the flight - there was only one seat left, and he was second in line for that seat. A buddy pass is essentially a standby ticket, so there is no guarantee you'll get on the flight.  (...and down...)
Noah had the bright idea of buying a set of Quick Tickets from Hawk Air. It is kind of like a book of 10 tickets that if you put a deposit down, you get a guaranteed price of $229 one way. It's about half price. We thought if we quickly did that, Tom would be guaranteed to get on,and it wouldn't cost $1200 for a return flight, so I called Hawk Air to set it up. (Going up again....)
While I was talking to the agent, someone booked the last seat. There was no way Tom could get on the flight and he didn't think it would be worth all the work to come for just Sunday and Monday, so that was that. (Back down... wayyyy down...) Of course, this had to happen on the day Noah went back on Dex. He was so upset. He had all these plans, and compared to Dad, I am boring. Don't worry, I am not offended - it's true, lol!
But, (going up again...) he had been talking to another kid about the draw and learned that we were the only ones who were told to put their names in so many times. He did think it was a little unfair, but, since it was to our advantage, he could live with it! We had a good chance of winning those tickets and he couldn't wait until the draw.
I think you can probably guess what happened. He didn't win. (down...) but it was worse than that, he kinda went picking through the jar to see who else had entered and his name wasn't in there at all. And my name was only there once. (down and twist...) Someone had tampered with the draw. The person who had drawn said that she took out a slip that she thought might have had his name on it AFTER the draw to write down a phone message. He doesn't really believe her, but, what to do?
He was totally bummed. And he couldn't let it go. I tried to talk to him about how maybe the person who took our names out was probably trying to make it more fair, but he thought it was just sabotaged. He stayed down in that spot for most of the day, even after I got an email from the Starlight Foundation, an organization we just made contact with who sends us "daybrighteners" - deals to certain activities, tickets to events, etc. We haven't seen many things we were interested in, but this email said that a bunch of tickets to Sunday's Canucks game had been given to them and if you wanted a pair, reply by noon, and they would let you know by 8 if you were fortunate enough to get them. He wasn't hopeful, and he was a bit cynical. (gee, I wonder where he gets that from???) BUT (going up... ) we were successful!  We had no idea where the seats were, but it didn't matter. He decided to take my Uncle Ken to the game. We thought he would appreciate it more than I would, and besides, I already went to a game this week!  ; P

 Fast forward to yesterday afternoon... after church we went to the mall (I needed a new nose ring - I keep losing them, grrr) and on the way back to RMH Noah was holding my phone when we received a text from Dan Hamhuis.  It was so cute, as he was reading his voice just got louder and louder, "Hi Stacey, it's Dan.  Sarah told me you guys are coming to the game tonight. Would Noah be interestED IN COMING DOWN TO THE DRESSING ROOM FOR A BIT DURING THE GAME?"  (Up like a rocket!!!) He was so excited he could hardly speak!!!  It was all he could do to text back, " Hi Dan, it is Noah. I would be thrilled to"  He just smiled for the rest of the day.  I could tell he was just bursting. 
Uncle Ken and Aunt Helene came to get us at RMH, then Aunty Helene and I dropped them off to pick up their tickets. It turns out the tickets were awesome! They were 21 rows up from the blue line. Thank you Starlight Foundation!
They agreed to meet with Dan at the beginning of the second period. He gave them directions on how to get down to the secure area, then brought Noah into the dressing room. He showed Noah the place where they work out, the place they watch games, the actual dressing room, where they fix their sticks and skates, etc. There were some other Canuck players in there and some of them shook his hand and said hi, but the one he was most excited about was Alex Burrows. He not only said hi and talked to Noah, he took him over to the stick rack and signed one of his used sticks and gave it to Noah!  He spent almost the entire 2nd period in there.  He just keeps saying, "My friends are gonna be so jealous!" and "I can't believe that actually happened!" Thank you Dan, you really lifted his spirits!  He is also never going to drink that water - he is keeping that bottle forever (because it is from the lounge in the dressing room)!  And he kept his Canucks jersey on for over two hours after the game....
I am trying to get him to write down every detail of what happened because it will be such a cool thing to read in a few years. He would prefer to dictate it to me while I type, but I think it will be so much better if it is in his own handwriting, with his own spelling mistakes. (That actually caused a bit of a dip in the roller coaster track, lol....)
We were talking about the wish thing with someone (Noah gets a wish from the Children's Wish Foundation) and he realized that what he got to do last night is what some kids wish for!  He is very thankful and amazed. 

                                                                   photo credits: Dan Hamhuis and Ken Vanderveen

We are in Abbotsford for a few days for a change of scenery, since Noah doesn't need to be at the clinic until Friday.  We are only here just in case he needs a transfusion; if he does, he would rather it happen here than in Smithers. No offense to the nurses in Smithers, but he is more comfortable with the nurses here - they are better at accessing his VAD, since they do it everyday.  In Smithers, the nurse who did it was clearly nervous and didn't do it the same way, which in turn made Noah nervous.  Maybe it is silly to stay just for that, but I would rather not increase his anxiety. He is generally feeling ok, but he is very tired.  His face is starting to get a little puffy again, but hopefully it won't be as puffy as last time.  He only needs to be on the Dex for 4 more days.  We'll see. Also he still isn't losing his hair!  If you pull on it a few hairs come loose, but it isn't falling out as far as I can see.  I told him this probably bodes well for his future; if a lot of chemo won't make his hair fall out, what's a little aging?
We are very thankful for how he is doing and feeling. I was worried about this round, but God has seen him through it all AGAIN.  He is so good.  All the time. (more on that another time...I'm ruminating on something...) 

Computer issues *edited Sept 26

I am so sorry to leave you hanging like that, but my laptop has been having serious issues-crashing all the time, like 7 times in an hour! It also won't post on the blog, it keeps telling me something is corrupt- yikes! I just thought I would let you know that God is so good, he heard all your prayers on our behalf and he really outdid himself! In one week we have had Noah's good friend come from Kamloops for the day and take us to Science World, gone to a Gala Fundraiser at the Four Seasons, gone to Dan and Sarah Hamhuis' house where Dan gave Noah a Canucks jersey and hat to wear to the Canucks game we were given tickets for the next night (!)  We had so much fun at their house; Noah is like a kid magnet - little kids just love him, and Dan and Sarah have a 3 yr old daughter with whom he got along so well! They played and played. She mostly wanted him to fall down and he obliged. It was very cute.
Wednesday Noah had chemo in the morning, and since he now remembered that the EMLA does actually work, he was much more calm than on that first Monday.  We had some visitors from our school while Noah was in the clinic and he was excited to show them around. Thanks for coming, Wilma and Paige! Then he had to have his Pentamidine, the inhaled antibiotic that he hates, which is preceded by a dose of Ventolin.  He was worried, because we had plans to go to a play with the Gr 12s at 2pm and the last time he had Ventolin, he ended up being admitted because it made his heart rate go up to 157 bpm.  He didn't want that to happen again! It was funny, because even his being nervous made his heart rate go up! The Respiratory Therapist had a good idea, though: he gave Noah the Pentamidine, and when his chest started to feel tight like it does with that drug, he gave him just one minute of Ventolin, which opened up the airway, but it wasn't enough to make his heart rate go up. It was a great solution, and Noah was very relieved.  He also gave Noah a pair of nose plugs to wear. He still hates the taste and the thick feeling the Pentamidine gives his mouth, but it was manageable with the nose pincher; he couldn't really taste it.  He needs that one every month for the entire 3 yrs of treatment - he better start getting used to it!
We went to the play in the afternoon, but left at the intermission; it was a bit heavy for Noah. I wanted to stay - I was really enjoying the singing, but when we left, one of the characters had attempted suicide, and I wasn't sure how the play would end, so we decided to go. Even though I haven't seen the end, I feel I can comfortably recommend it. It is called "Next to Normal"  Heavy, but good.
The evening show was better. Way better. It was called "Arnie the Carnie's House of Fun".  It was basically a magic show, which was right up Noah's alley. It was great; we came out of that one completely amazed at what that guy could do! He is an excellent magician, and could perform other feats, such as lying on a bed of nails with another bed of nails on his chest while his assistant put a plexiglass box on top, then a 20 pound cinder block, and THEN the assistant smashed the cinder block with a sledgehammer!  It was crazy! and the nails were sharp - we tested them by throwing bananas at them.  Unbelievable!
Thursday - wow, I'm only at Thursday- was probably the best day. Caleb and Kent Novakowski, good friends of ours who moved from Smithers to Kamloops, drove down for the day.  Kent and his wife Lisa had read how sad Noah was on Monday and decided he needed cheering up. It was so great! They arrived around 10:30 am, and Noah and Caleb played some foosball and some video games, then after lunch we went to Science World.  We watched a movie called "Dinos Alive" on the HUGE Imax screen they have there. It was pretty awesome.  We hung out there for the afternoon and on the way back to RMH, Noah "happened" to mention that the gelato shop we went to in July was close by... so Kent turned the car around, and took us for ice cream.  At 5:00.  We ate ice cream for supper.  It was awesome.  Chocolate peanut butter cup ice cream. mmmmm....
The day was not yet over, though! We still had one more play to go to: "As You Like It". Real Shakespeare!  (my favourite) We read the plot of the play online before we went, and again from the program, so he could follow along reasonably well.  He even said he liked it, and thought it was funny, which made me very happy.  It was in a kind of outside theater, so it was pretty chilly, but we brought blankets on the advice of one of the volunteers at RMH and I am glad we did.  Thanks to Chris Steenhof for the tickets and arranging all of that for us!  It was very fun!
Nosh has accumulated quite a collection of jerseys as well: my cousin Debbie asked the Oilers if they would send Noah something, and they sent a Tim Thomas jersey! I know, Tim Thomas has never played for Edmonton, but he did sign with them. In 1998. So it is old, but very cool. Then at the gala, there was a silent auction with loads of different jerseys, like an autographed Dan Hamhuis jersey, an autographed Gordie Howe jersey, lots of other Canucks jerseys and sticks, and one lonely autographed Jordan Eberle Oilers jersey that nobody was bidding on. So I bid $50 and started things off-we ended up getting it for $90, and Noah was thrilled! Then he got the Canucks one from Dan, which was so cool, but was hard for him to wear. He did say he would cheer for the Canucks, and he did, which was made easier by the fact that they were playing Calgary, and no self-respecting Oilers fan would cheer for Calgary! It wasn't natural, though, so we kind of unofficially cheered for nice goals, good passes, and hard hits. It was fun. He has been feeling really good this week and eating a lot! He was on the Dex for 7 days, off for 7 and now tomorrow he goes back on for 7. Hopefully he doesn't experience the same roller coaster of emotion he had the first week. Please pray with me that he tolerates it better this time. One very exciting thing (and yet another blessing) is that on Saturday morning Tom is coming for the weekend! Nosh is so excited! I think I might be more excited than he is, though! Well, it is quite tedious to post on a blog on this phone, so i am going to stop. Hopefully in the next couple of days I can figure out what is going on with my laptop so I can post more regularly! Thank you for your support, meals for our family, and most importantly for keeping us lifted up in prayer! "We are pressed but not crushed....struck down but not destroyed"!!!

A Very Sad Boy

I don't quite know what to do about him.  I am pretty sure it is the Dexamethasone.  some people get really grumpy; apparently it makes Noah sad.  He has seemed really tired and kinda down since Saturday.  I put it down to staying up late and all that puking ( it can really tire a kid out), but I realized today that it is more than that. 
He has been kind of worried about today's clinic appointment the last couple of days.  He had to go to get the l'asparaginase injections in his legs this afternoon and by this afternoon he was downright scared.  He cried and curled up in a little ball, not letting the nurses anywhere near his legs with those needles.  I finally intervened, telling him the same thing I have been telling him all along, that the EMLA does work, he is always relieved when he can't feel the poke, etc.  I pulled his legs out, sat behind him and tried to calm him down.  If he is tense when they poke him, it hurts way more.  There is a trick that if he wiggles his toes, his legs are not too tensed up, so I encouraged him to do that.  It worked and when he didn't feel the poke he kind of sunk into me and said, " you were right..." Yikes.  Hopefully he remembers that on Wednesday!
Unfortunately, his mood didn't really improve after that.  He was trying to do a drawing with a volunteer who came to do crafts, but he couldn't.  He just looked over at me and tears rolled down his cheeks. For no reason at all.  When it was time for supper, he didn't want to eat what was provided, so I made him a tuna melt which he usually loves.  He sat down and cried.  I mean, sobbed.  He dripped tears all over the table and his sandwich and everything!  It wasn't even really about the food, and even talking to Tom on the phone didn't help.  I went over to him and he stood up and threw his arms around my neck and just cried.  I really hope it is a mood swing, and that he doesn't just stay down here at the bottom the whole three weeks... I don't think I could handle it.  He finally ate a bowl of cereal and went to bed. At 6:30.  He is still sleeping.  I have to give him another dose of that lovely Dexamethasone yet tonight. yay...
I guess I'll have to wake him up.  Fun....

Whew! It has been a bit of a whirlwind the last few days!  To begin with, Noah went to the first 3 days of school and had trumpet lessons and playdates, etc. After a full day of school, he and I flew into Vancouver around 10:00 pm on Thursday night.  We went straight to RMH only to find that they weren't expecting us! Thankfully there was a room available so we could crash and figure it all out in the morning.  Turns out (we found out at noon the next day) there was a bit of a mixup - the person who is in charge of booking at RMH had booked us into Easter Seals because there wasn't any room at RMH and thought she had left us a message informing us.  Needless to say, I didn't get said message and was very confused when Easter Seals called me on Friday morning asking why we didn't show up the night before and did we still need the room until the 30th?  (What???) Anyway, long story short, it is all figured out now and we can stay at RMH for at least 2 of the 3 weeks we need to be here.  (Yay!) 
The next thing that happened was chemo.  Noah is on to the next phase of treatment called Delayed Intensification. This entails a Lumbar Puncture on the first day, a dose of Doxorubicin (the one that will likely make his hair fall out and can cause damage to his heart)Vincristine and Dexamethasone, a steroid similar to the Prednisone he was on the first month, only he will get double the dose.  The side effect list that comes with the Dex is scary: everything from weight gain and stretch marks to vascular degeneration of his hip joint.  One of the ones I really hope doesn't happen (well, besides heart damage...)  is mood swings.  Apparently some people get really grumpy and angry on this drug.  : (       I really don't want to lose my sweet boy... I know it would only be temporary, but it would be hard to see that.  Please pray with me that he will be protected from all these side effects, especially the damage to his heart.  Weight gain would be just fine with me, however....

Noah was also supposed to get his monthly dose of Pentamidine, the inhaled antibiotic that he hates because it tastes awful and leaves a thick feeling in his mouth.  The respiratory therapists always start with Ventolin, which is the drug that is in a puffer, to open up his airway.  I didn't know this but every time he has had Ventolin, his heart rate goes up.  I have never paid attention to this and no one has ever told me.  This time his heart rate went up to 157 bpm (beats per minute) and that is resting! It was a bit freaky because it just wouldn't go down! After about an hour they decided not to do the Pentamidine because his heart rate was still at 130-140 bpm.  At about 4 it was down enough (and looked like it was on a downward trend) that we could go. They unhooked him from his IV and deaccessed him (took the needle out of his VAD). He had been playing a computer game and wanted to finish the level so we stuck around until he was done.  Just before we were going to leave, he felt really sick and threw up.  And threw up. And threw up.  The nurse tried to give him some more anti- nausea meds but to no avail, he just kept vomiting.  Poor guy. I felt so bad for him.  Also, of course, his heart rate went back up, too.  The docs did a quick assessment and decided that he needed to stay overnight.  So we went up to 3B and got settled.   I am starting to feel so at home there I know where the extra pillows are kept (read: hidden), and where a good place to find a mug is, etc.  It is really sad, lol! 
I went back to RMH to get stuff and properly check in, sign all the papers, etc and surprise! There were tickets to the BC Lions game in our folder!!  I was not hopeful that Noah would be out in time to make it to the game, so I put it to my Facebook prayer warriors.  The last time Noah went in because of vomiting, he was there for 3 or 4 days, so I thought there was no way he would be out in time.  The last time he threw up was midnight, so in the morning I asked the nurse about the game and she said they were talking about discharging him but even if they didn't, he could probably get a pass to go to the game.  That was cool, and he was so excited.  Then they came and said that if he could keep something down, they would discharge him!  He ate a small muffin and drank some tea. And kept it down.   Thank you Lord! Like someone said, that is the power of prayer!
He was so happy.  He really wanted to go; he had never been to a CFL game before.  He would have been happier if it had been Winnipeg playing, but oh well.  (He likes the Blue Bombers because they have a cool name.)
It was crazy and crowded -25,000 people were there! And it was SO hot! We are both a little sunburned, but it was totally worth it!  We had seats 7 rows up from the Lions sidelines at the 35 yard line.  It was very fun. Thank you to Tim Hortons, who donated the tickets. 
Tomorrow morning the Board of Directors is making us brunch!  The menu looks amazing. I am excited; I love breakfast....

This week and next Noah has to go for his Asparaginase injections again. That is the one where he was allergic to the IV one, so they have to do the 12 injections in his quadricep over 2 weeks.  Then on Friday he gets more Doxo. Please pray it doesn't make him vomit like that again.
We will have a bit of diversion, however: this week the grade 12s from BVCS are coming to Vancouver to attend the Bard on the Beach festival, and they have invited us to a couple of plays. I absolutely LOVE Shakespeare, so I am super excited about this. Noah so far, not so much. But he just doesn't know what he has been missing.  I am confident he will enjoy himself, as long as he is feeling alright.  We aren't going on Friday. 

Well, I am tired.  Good night, all!  Have a great Sunday!