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! 

A good week but a not so good day....

We have now been in Vancouver for a week and it has been interesting, to say the least. We have had quite a bit of fun at Ronald Mc Donald House; there are a lot of little kids here, so that is always a hoot.  There were 5 four-year olds, 2 seven year olds, 2 two year olds, a one year old and Noah.  He is really good with them so they try to engage him in any sort of play, which is fun for me to watch.  Yesterday, one of the four year olds, Krystina, who has been through two cancer diagnoses in her short life, was writing up appointment slips for her dog, Bunella.  He was having a few different treatments: "chemotherapy, radioextoma (a completely made-up word) and kidney function (they do bloodwork to test kidney function)." It was absolutely hilarious.  She just cracks me up.  Noah was very amused, but he played along and I am happy to report that Bunella is doing very well, all things considered.
We have had some really good dinners here, too.  One day this week the owner of  a candy store and her friends came and put on a Mexican fiesta, complete with maracas, sombreros, fake mustaches, music and a pinata!  It was great, even though the pinata was indestructible, especially with so many little kids, it took a really long time to break! 
Noah's friend, Jasper has been in the hospital the whole time we have been here and not up to playing any games, which made Noah very unhappy.  We have been going to visit Jasper every day and every day Noah brings along his laptop and a game he wants to play with Jasper, but he was never well enough.  Until tonight, when they played for a few hours and Noah fell asleep happy. 
We have also spent quite a bit of time visiting Kiera, the little girl I wrote about a while ago, from Indonesia.  She is now here in Vancouver, at Children's.  It was a hard week; her parents received some very difficult news, so we did some crying together, but they are able to see the Lord's hand in their situation as well. They have been well supported by people here and in Indonesia, and are doing ok.  They are very thankful to everyone who has been praying and fasting for Kiera. 

For the most part, Noah's appointments have gone well; he gained a couple of kilos at home and only lost 500g this last week, he hasn't been too nauseated, he has had two LPs and they both went fine (and I got some really good photos- if you are curious what happens, I can email some photos to you, but be warned they do involve needles and spinal fluid...).   He did not, however, have a good pentamidine treatment today.  I had such high hopes, since the last one was so much better with Ativan, but no, he was very anxious, it took FOREVER and I became quite frustrated, which may or may not have helped him....  I don't know what else to do about this, he will need one of these every month until June 2014, so he had better figure out a way to handle it soon....  maybe if I could get my hands on some Ativan too, we would both be better off...

After the difficult afternoon, I needed a break and my friend Barb (Jasper's mom) provided the perfect opportunity - Celtic Fest! We went to a fabulous concert called Galway to Guadalajara. It was a melding of Celtic and Mariachi music and it was awesome!  They played separately and together and it was so fun.  There was a dance floor and a lot of people were dancing and it was perfect. 
Noah was very happy to go to the hospital and hang out with Jasper and his dad, Stephen and play Star Wars.  It was a win/win. 
Well, I am going to bed.  Tomorrow I am going to see my friend Elaine, who was medi-vac'd down here for a lot of tests.  Please pray for her, she has been having terrible headaches and vomiting; her two CT scans were clear, so they first thought she also had encephalitis, but the drugs they were giving her for that weren't working, so they need more tests to figure out what is going on.
I will keep people updated on that situation as much as I can...
Good night!

The last round....

Whooo Hooo!  Here we go - off to Vancouver tomorrow to begin the last round of this difficult, intense first year of Noah's treatment.  Bring it ON! I am ready. 
We will be in Vancouver for the next four weeks; this round he will get
ARA-C, Cyclophosphamide, Methothrexate (in his spinal fluid) for the first two weeks or so, and Erwinia during the last two weeks. He is supposed to get the drug that caused his VOD (Thioguanine, or 6TG) but he won't be getting that, thank God!  I am not sure what the doctor decided to do about that, he was considering two options: skip it all together, or give him a similar, better tolerated one, 6MP (Mercaptopurine).
 I kind of hope they decide to skip it, because 6MP is a real pain.  It has to be taken on a very empty stomach, two hours after eating and then after taking it, he has to wait one more hour before eating.  It is very difficult to find a good 3 hour window like that in a day.  I think if he has to take it, we will try as soon as he wakes up, then he can watch tv or whatever for an hour, then eat breakfast. I think that would be the easiest. 
Noah will take 6MP every day for the entire two years of Maintenance, so it is important to figure out a good time for it.  If you remember, he was on it in May when my sisters Denise and Julie came to visit us and we had to take the 6MP with us wherever we went or we would miss the opportunity to take it, so Noah had "Mall Chemo" and "Park Chemo" or "Whatever-We-Were-Doing-At- The-Time Chemo"  He took it all in stride and we tried to make it fun.  However fun not eating can be....
 It also causes a lot of mucous to build up in his throat, which makes him throw up.  He actually threw up every morning when he was on it.  I felt really bad for him, but I  told him it was good for him, now he will be better able to empathize when his future wife is experiencing morning sickness.  We actually called it that, lol! 
After this month of treatment, Noah should be able to start maintenance.  In my mind, maintenance was like a dream, where we would be able to come back to Smithers and our life would be normal again.  Noah would be able to go back to school, I would finally get my house clean, and we would only have to go to Vancouver for one day a month for the next two years.  In theory, this is what should happen. (well, maybe not the house thing - I have struggled with that for years, it really would be a dream if THAT happened, lol!)  I am trying to not get my hopes up, though, because a lot of the kids I know who have recently begun maintenance have not had smooth transitions.  I hear it takes about 3 or 4 months before the counts recover consistently for treatments to happen on their prescribed days.  Some kids have had such low counts they haven't been able to have any treatments for quite a while.  I have decided to expect a bumpy road.  I mean, nothing has gone smoothly for Noah so far, why should I expect this to be any different? : ) 
I have also lightened up about Noah returning to school this year.  He is doing fine and generally keeping up in his studies, so if he doesn't go back at all this year, and just rejoins his class for grade 7, we aren't going to stress about it.  The only class in which he may struggle is French, but he picked it up really quickly before and I'm sure he will again.  Tom can give him a crash course in the summer, so he won't be too far behind. 
Today when I picked up Noah's results from the lab, I didn't know what was going to happen; usually I can take one look and see if we are going or not.  For treatment, Noah's white blood cell count has to be  0.75 or higher (today it was 2.0) and his neutrophil (infection fighting white blood cells) count also has to be above 0.75. Today his neutrophils were at 0.7. He was short 0.05 neutrophils (X 1,000,000,000  if we are going to be exact)  I didn't know if that was enough to keep us here for another week or not.  After a bit of consultation, the nurse called and said we should come because probably by Friday he will be over that threshold.  We'll see.  So we are flying out in the morning and going to the hospital for treatment on Friday, for an all day affair. 
I will let you know how it all goes... to be continued....

One Year In...

I realized tonight that today is the first anniversary of Noah's diagnosis. 
It went by so fast....
So much has happened.
It has been interesting to go back through the blog and remember all the fun times and also the not so fun times.  To think about all the people we have met along this journey who have touched us forever. 
Also to think about the people we already knew who showed us so much love and support and who have also touched us forever. 
I am not really sure what to say or how to document this day - not yet, but I do know that without the Lord's hand in all of this, it would have been so much different.  He has blessed us so richly in so many ways, we cannot even begin to recount!  He has answered many uttered and many unspoken prayers, and shown his great love for us in those answers.

I used to doubt the goodness of God. 
I did.  I remember reading through The Purpose Driven Life by Rick Warren, and a quote jumped out at me. "God's ultimate goal for your life on earth is not comfort, but character development..."  Which led me to the conclusion that everything in my life happens to teach me a lesson.  I began to approach life with the view of God as detached teacher, and an authoritarian one, to boot.  In my mind, I twisted the above quote even further to say, "God isn't interested in my happiness, he is interested in my character." 
I do think that God uses the consequences of my actions to teach me a lesson, but I am not so sure about how he uses my circumstances ( although there is always something to learn!).  I used to be afraid of what God would do in my life to get my attention fixed on Him, where it belongs. I literally feared God, and quite honestly felt suspicious of Him, always trying to second - guess His motives in every circumstance in my life.  
When Noah was diagnosed last March, I thought, well, here it is - God is trying to get my attention.   My personal devotion time had dropped off, I had kind of backed off my devotion to Him since starting my new job and not being involved in my Women's Bible Study, where I had been a leader.  I thought that he was using my child to teach me a lesson -"Don't ignore me!"

He was teaching me a lesson, but I couldn't have been more wrong about what it was. 

He has been teaching me all year about His great Love.
It has been shown the most clearly through His people.  We have been blown away by the support we have received from people in our church and Christian School community, financial and otherwise, but really, the LOVE people have shown is by far the best part.  I am so touched by people who come up to me and hug me with tears in their eyes, asking me about how we are doing; they honestly care. I actually can't go anywhere in Smithers without people stopping me to ask us how we're doing. Meals show up at our house every day.  Cards and gifts from people we don't even KNOW,  The day of Noah's diagnosis, Tom was here in Smithers, we were in Vancouver, and a parent from our school approached Tom and said, "We bought you a flight.  Go." That is LOVE (it still makes me tear up to think of that moment).  Grade 11 students from the class in which I used to work organized a benefit concert, where anyone who wanted to could come and share their gifts and raise money for us - that is love! (and a LOT of talent, as well!)  Four girls from a family dear to us decided to cut their amazing, beautiful hair and donate it and raise money for flights for us while doing it - that is LOVE.  The Sausage Factory, a local store, put a box with Noah's picture on it beside their till and people who shopped there kept filling it with coins for a whole year - that is LOVE.  There are countless examples of God showing us His love through other people.
He also began to work in my heart. One example of how he began to reach me, happened when Noah had c.Difficile and we couldn't stay at RMH.  We were booked in at Easter Seals for the weekend. Don't get me wrong, I appreciate Easter Seals, it is a good place to stay, but it is old and kind crumbling, it smells bad and most of  the rooms are so old they just seem dirty.   I had heard stories about bedbugs (and actually seen evidence of them there - no bugs, but they had been in that room -ugh...) so I was really reluctant to go there.
They do have 4 rooms that have been remodeled, of the 50 in the building.  I started praying, kind of half heartedly, "Please let us get a new room (and no bedbugs)!"  with out really expecting God to answer. 
Well, what do you know, but we got a New room!  The House was packed and the only room available was a remodeled one!  The room was gorgeous, new laminate flooring, maple cabinets, granite countertops, undermounted sinks and a flat screen TV! It was nicer than my house!   I remember being so excited and surprised, but then I thought, "well, I prayed for it... I shouldn't really be surprised, should I?  Doesn't God love me that much that he would answer that kind of prayer??"
The answer: of course He does.  He cares about my happiness.  AND my character.

Delayed....

We just got back from getting the results of Noah's blood work, and it looks like his counts are too low to have treatment, so we get to stay home for another week! I have to say I am relieved.  He really isn't feeling well so it would be great to get him feeling better before he gets more nasty chemo.  Hopefully he will also be over this cold that he picked up so that we can even stay at RMH.  I might even be able to find some time this week to put up some photos I promised.... stay tuned.....