Maintenance week 1 - done!

There are 85 days in each round of maintenance. Every day Noah will take a chemo drug called Mercaptopurine, or 6mP. Every month from now until June 2014, he will need to go to Vancouver for Pentamidine, the inhaled antibiotic, and sometimes a Lumbar Puncture.  The first five days of each month he will take Prednisone, and every Friday, methoTREXate.  The chemo will make his counts go down, so they will be adjusting them until they can keep them at a certain level, constant for the next two years. 
We have only been doing this for one week, and we have already forgotten 2 6mPs, a Prednisone and 1 methoTREXate. 
Sigh.  I know that I am not the most organized person in the world, so when we got home from Vancouver, I took out the calendar and detailed each med and when it was to be taken on each day.  It turns out that for a system like that to work, one must actually LOOK at the calendar.... *shakes head*
On a brighter note, Noah has really enjoyed being at home. He has been hanging out with his friends, playing video games, specifically the new Star Wars game for the Kinect.  He has been very active, riding his bike a bit, jumping on the trampoline and just being a normal 11 yr old boy.  He even went to and participated in a Bowhunter's Jamboree yesterday!  His good friend Curtis and his brothers are accomplished hunters and love archery and bowhunting, and Noah has had a lot of fun the last couple of years at their house, learning to shoot with his compound bow.  This weekend they invited him to the Jamboree and he had a blast - he said he thought he hit about half of the targets, which he was proud of.  He was completely exhausted when he came home after an entire day of shooting.  Exhausted but so happy. 
He has also done a lot of homework; he only has two pages left in his math book!  Once he is finished math, we are going to start a science experiment. He isn't going to go to school, I think, until next year.  His counts will likely be up and down until they figure out his dosages and we just think that since there are only two months left, we'll just finish out the year at home, and give him a fresh start in Grade 7.
oh, and as I promised, some photos:

The Lego Store has an entire wall of pieces you can buy in bulk! 

 There is a kiosk where you can make your own minifigures. Noah had a lot of fun designing a few.

I don't know how, but I forgot to tell you that the Batmobile (yes, THE Batmobile) was at the hospital while we were there last week.  This is not the best photo, but I love Noah's hilarious attitude here,and also how much Jasper is loving it too!

 Thank you all again for your love, support and prayers - we are still overwhelmed by it all.....

"Happy Maintenance Day!"

That is what we heard (more than once) this morning as we entered the clinic. It was kind of nice to have it acknowledged, like when someone remembers your birthday without you having to remind them. = ) 
Maintenance Day started out early - we stayed at Ronald Mc Donald House last night and we had my least favorite room in the place: room three, right under the kitchen.  Sometimes that room isn't so bad, like when there are a lot of teenagers in the house, because people sleep in.  Right now there are mostly toddlers at the house, so as one would expect, we were woken up at about 6am by the pitter-pattering of little feet over our heads.   Unfortunately, we didn't foresee that happening, so we stayed up fairly late last night, and paid for it this morning.  Noah finally got up at about 6:45, and I tried to go back to sleep, but to no avail.  Oh well. 
When we finally went to the hospital at 10:30, Noah was driven to distraction by thirst.  He had an LP this morning, so he wasn't allowed anything by mouth for 6hrs beforehand.  Thankfully, they got him in to the LP almost right away today; sometimes he has to wait a couple of hours before he goes in, so he goes without any food or drink from dinner the night before until after noon.  Today he was out of his LP and able to sit up by noon, so that was great.
The rest of the day wasn't so hot. I think today was the worst Pentamidine treatment he has ever had.
 He was so anxious, he couldn't even think about putting that inhaler between his lips from 12:45 until about almost 2:00.  We have been preparing for this treatment for a whole month, planning our strategy: he would get Ativan to help him calm down; he would get nose pincers to plug his nose; and some really strong gum to mask any taste and reduce the thick feeling in his mouth. And afterward, we would go to the new Lego store at Oakridge Mall to pick up a small Lego set as a reward for doing such a great job.  We realized today that there was a bit of a flaw in the plan- he wasn't given the Ativan until the RT came to give him the treatment. Ativan takes about 20 min to start working, so we were well into a big freak out before we thought that maybe it was starting to kick in.  He would just look up at me with panic in his eyes every time I tried to get him to put the nose pincers on.  He was so tense, he couldn't keep his legs still and he just kept his face covered with his hands. I don't think the Ativan ever took effect; I think he might need more next time, and a lot earlier!  It took well over an hour with a lot of praying, coaxing, cajoling, crying and gagging before I went to the only thing that has ever worked.  I got mad.  I hate that that seems to be what helps him focus enough to get it done, but I can talk until I am blue in the face about how "you have to be the one to decide you can do it,so make a decision that you can do it, take a big breath, OK, Noah, you can do this, challenge yourself to take 10 breaths before you need a break, then see if you can get to 20 and, OK, let's try again, calm down, you can do it .... grr...JUST DO IT!"    But until I tell him he is acting like a big baby, etc, nothing happens.  It sucks. This afternoon was no exception. As soon as I got mad, he picked up the nebulizer, put it in his mouth, and did 56 breaths! Without a break!  When he finally decided he could do it, he was done in less than 5 minutes!  It makes me want to pull my hair out in frustration, but I really don't think he has a lot of control over it. He gets into the room and like muscle memory, instinct and anxiety just take over.  I don't really know what else to do, because it seems like he hangs on to the anxiety, not letting "the plan" work. 
I did talk to our doctor and he suggested that Noah try Septra, the oral antibiotic that he didn't tolerate last year, instead of Pentamidine in May.  Hopefully he reacted to the Septra because his body was in shock from all the chemo he had recently started, so now that he is more used to all these chemicals, his body will be less likely to react.  We'll see. It would sure be nice for him to not have Pentamidine hanging over his head all month, making him dread going to Vancouver. 
He was really excited to go this time; his good friend Jasper is out of the hospital, and they really missed each other, so we decided to go a day early so we could hang out with them yesterday.  Noah and Jasper played the new Kinect Star Wars game for about 4 hrs!  Then they played a different game until Jacob, another boy their age, came in the  evening and they made up a crazy game with wheelchairs and Easter baskets that I can't even begin to explain to you!  After Jacob went home, Noah and Jasper watched a movie.  I would say it was about perfect. This morning they were both really sore!
I was also very happy to go back and spend the day with Jasper's parents, Barb and Steven.  We were only home for two weeks, but it felt a lot longer to me.  We spent the afternoon catching up and then we ordered sushi for dinner - yum! I am so thankful for good friends.... They may be finished after this round so they may not be there the next time we go, which is good but sad. 
We also went to Oakridge and checked out the Lego store. It is every boy's dream - there is a little kiosk where you can build your own mini-figures, and some sets have a "virtual box": you can hold it while standing in front of a camera and the finished set shows up on top of the box you are holding and moves around and opens up, etc on the screen in front of you.  Pretty cool.  There is also a whole wall of pieces that you can buy in bulk.  Noah had a lot of fun in there, checking it all out, designing mini figures and choosing the set that was to be the incentive to have a good pentamidine.  I took the opportunity to fool around with my camera, trying different settings and actually got some cool shots. Tomorrow I will put up some photos.
Now, I need to sleep....  

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!