Maintenance

Wow, what to say... it has been so long... we've been home since last week Thursday, then we went to Terrace to visit my parents for Easter, and now we are trying to settle in and create new routines because....
Noah is officially in Maintenance!! This means we can be at home more than we are in Vancouver; we'll only have to go about once a month for some Pentamidine, chemo, and sometimes an LP.     He will still be getting some chemo at home: 6MP every day, Prednisone for the first five days of every month, and Methotrexate on days 1,8,15 and 22 of every month (for the next 2+ yrs- he will be finished in June 2014).   Once Noah is "settled" in maintenance, meaning once they figure out the dosages required to keep his counts at a certain level, which could take 3-6 months, Dr. Davis wants to try him on Septra again.  That is the antibiotic he couldn't take and the reason he has to be on Pentamidine, the inhaled antibiotic that he hates.  Septra is a pill that must be taken only three days a week, which might be really hard for me to remember.  In fact, I forgot to give it to him the first week he was supposed to be on it! I actually didn't remember to give it to him at all for almost two weeks, until someone at the House mentioned it.  I can see that happening again - my brain is even more fried now than it was then!  I feel bad saying this, but I would almost rather he stay on Pentamidine simply because it is easier for me, only once a month, just do it and get it over with! The idea of it makes him very anxious, but I think we have a good solution now - Ativan to calm him down, and nose pincers and gum so that he can't taste it.  Noah was supposed to go to Vancouver for his first maintenance treatment this past Friday, but his counts were too low, so they gave us another week.
Another week to take his RC car out with a friend (and break it again, lol!), another week to play video games with more friends, to ride his new bike, to hang out with his sisters, to finish up some school work, and just be a normal kid.  It is so great to be home and be normal. 
And it feels normal, except when you look at his cute bald head, and also when you suddenly remember after inviting 9 girls over for Miranda's birthday party that you forgot to ask if any of them are sick and you panic a little, thinking, "what do we do if someone shows up sick??? say, 'sorry you can't come in?' "  I'm not so sure a 9yr old girl would take that so well..... thankfully all of them arrived healthy and we just had a lot of fun, jumping on the trampoline and dancing the night away playing Dance Central on our Kinect.
I am starting to feel like it is about time to be getting back to Vancouver - kind of a restless feeling, since we haven't stayed home for longer than about 2 weeks since last March.  I hope that feeling goes away, and is replaced by happiness to be home and stay there. 
I am REALLY missing the people we have become close to at RMH; it is the kind of place where relationships grow and flourish very quickly, and the last few weeks there were very intense-there was a lot of soul-baring conversation, which I am missing with all this normalcy.  Most of the people who were at RMH this last month were Christians (actually one had been a pastor and one family is a missionary family, but there were also others as well) - it was really cool. We were wrestling with some very deep stuff about God's will, God's will for healing, and how to pray and so much more.  Like I said, it was very intense, so I was very sad to leave and feel like we are done. We aren't coming back to live there anymore.  I actually cried at the thought of going home and leaving all these special people behind. I felt like going home was like slamming a big heavy door shut on this chapter of our lives, and I wasn't ready for it.  God prepared me, though. We were scheduled to go home on Thursday, and on Tuesday morning both of the families we had become really close to (the Unraus and the Mohans) went home before we got up. One for good (the Unraus), and the other for a visit (the Mohans).  It helped me feel ready to go.  If they had all been there when we went home, I would have been bawling my head off when we left. Thankfully for Noah, Jasper Mohan and his dad Stephen came back on Wed., so they could hang out for a bit before we left. The house was quiet, everyone else had gone either to the hospital or out for the day, and it felt ok to leave.  I still cried, but in gratitude for all the ways in which Ronald McDonald House took such good care of us during the 13 months we lived there. I am sure that whenever we go back there it will always feel like home.
We have some fun things going on around here in the next while: it is Mc Happy Day on May 2nd and Noah and I are going to hang out at the Smithers Mc Donald's to try raise the profile of RMH and give it a face here; one of the police officers here is doing the Cops for Cancer ride from Prince George to Prince Rupert and has asked Noah to be involved with his fundraising efforts; and our school is doing a fundraiser for Leukemia and Lymphoma research.  This is really fun - they are doing a penny drive so any of you who live in Smithers or Telkwa, please come and bring all your change to BVCS!  Anyway, in the high school, there is a twist - any loonies or toonies raised actually count against the total for each class - so they can be used to sabotage another class' efforts to raise the most money.  Emily has been saving all the toonies and loonies she gets so that at the end, she can put them into the class box that has the most money, and hopefully her class will win.  What a hilarious idea - to put more money into someone else's box so that they will lose!  The grade 12s are the target, I think; they have a negative total so far.  Our school is very competitive, and very generous, so I'm sure this will be a great fundraiser! 
I can't wait to see all the action on the last day. Every year we have a Hunger Auction in the fall, with half of the money raised going to the food bank and half to a different charity. The kids bring in food, usually junk food, or baking that they know their friends like, etc, then they auction it off.  It is hilarious to see a case of Coke go for $100 or more.  We have about 120 kids in our High School, and the last few years they have raised over $6000 in this auction.  Isn't that crazy?  The idea is to be the class who raises the most.  I know this will be a lot of fun. I'll keep you posted as to the totals. 
Oh, I forgot to tell you about the ad! Most of you will remember that Noah was filming an ad with the Sedins on Valentine's day that we thought was going to be used during the Canucks for Kids Telethon.  It wasn't - it was for the "This is Our Home" ad that is on during the hockey playoffs!  Here is the link:
 http://video.canucks.nhl.com/videocenter/console?hdpid=6&id=167991

There is also an outtakes video that Noah is in - he actually causes one - it is really cute!

http://video.canucks.nhl.com/videocenter/console?hdpid=6&id=168017

Have a great Sunday, folks!