I am very ashamed...

about how long it has been since I updated this blog!!!!  I am so sorry. 
Last time I said, "No news is good news. "  Well this time that isn't entirely true.  Nothing catastrophic has happened, but poor Noah has been through the ringer this fall! 
It all started at the Fall Fair.  Smithers has an Exhibition every fall where there is a carnival, a rodeo, concerts, competitions in every category you can think of from photography to creations made of vegetables, and so much other stuff it is a crazy fun time.  This year we decided to go on the Saturday night because that was when Noah's absolute favourite band, The Arrogant Worms, were playing.  We arrived a little early so the kids could go on some rides.  Not five minutes after arriving, Noah sidles up to me and says, "Mom, I have a rash...."

I knew as soon as I saw it - Shingles.  Aww, man.....  I knew Shingles is a big deal with "Leukemiacs" (Tom's pet name)  so I called the hospital.  The Oncologist on call (not our doctor, because everything that happens to Noah happens on the weekend or at night, so we always get someone else)  said that he would likely have to be admitted so we should go to the hospital.  I asked her if we had to go right now, and she just said, "I am not sure how to answer that question."  So I decided that we would go, but after the concert.  I felt kind of bad, but we had only just arrived and he really wanted to see the band.  We were very careful to stay away from any little kids or pregnant women, and so the kids went on some rides and then we left after the concert, which was very enjoyable; the Worms are very funny. : 0 )

He was admitted, which was super awesome and very convenient, because it was the teacher work week, and both Tom and I were supposed to be at meetings every day that week.  Instead, I was sleeping at the hospital, Tom was going to the meetings and the girls were staying home all day by themselves, watching TV all day.  (When we got internet, we also got a satellite dish, so we actually have  clear channels to watch, which we have never had before.  The kids are over the moon about it) Tom would come to the hospital after school, I would go home and hang out with the girls, and make supper, then go back to the hospital and Tom would go home.  UGH.  It was the first time I questioned moving so far out of town. 
Noah was on a strong dose of  IV Acyclovir, (an anti-viral) every four hours, and apparently it can be hard on his kidneys so he had to be on fluids as well.  Thankfully his oncologist decided that since he was doing ok, he could go home on the Wednesday afternoon.  What a relief!  We just had to finish the anti-virals at home.  Much better.  That was not what we wanted to be doing our final week of summer before school started! 
We think that while he was at the hospital, he picked up c. Difficile again, because he has had it twice since then.  He has also had a stomach bug, a REALLY bad cold that took him weeks to get over and some other mystery bug that landed him in the hospital for five days at the end of October.!!!  He has been at emerg SIX TIMES since August 25.  Actually more than that, because at one visit it was decided that he needed  doses of IV antibiotics over three days so we needed to come in every night for a dose.  That was a real pain, because we had to go into Emerg after 8pm, because they had to be 24 hrs apart. We would be all cozy at home and everyone doing homework or watching tv and we had to go into town to the hospital.  I guess it was only for three days, but it sure felt like a lot more!!! 
This last time he was admitted, he had c. Diff, so he was home from school with me, and I just randomly took his temperature, only to find it was 39.4!  I was so shocked- he did not look like he had a fever!  When we arrived at Emerg, it was up to 39.9.  it was crazy.  They did a whole bunch of tests, but nothing ever grew in any of the cultures, so they think it must have been a virus. 
He spent five days in the Palliative Care room here at the hospital.  It was a bit weird to be in there, but in actuality, it was really awesome; it is the biggest and nicest room in our hospital.  It has two leather couches, a fridge and a microwave, an actual table and chairs to eat at and for Noah to do his homework at when he felt better, and a big flat screen TV with cable! It was great. I mean, if you have to be in the hospital, you may as well be comfortable, right?  Especially if you're in isolation.  He had really low counts and c. Diff, so everyone who came in had to be masked, and if they were to have contact with other patients, gloved and gowned too, both to protect Noah from the other patients and to protect them from him! 
We were a little worried because he wasn't feeling too well last night, so we thought he might be getting c. diff again from the anti-biotics he was on, but he is much better today, so we are very relieved and hopeful that he won't get it again. 
His Neutrophil count has been very low since he was released from the hospital, so we have been a bit nervous about him being at school, but it would be no better at home, because I think the only person who is sick at school is actually Emily!  He would have more exposure to her germs here than at school, lol!  I did go around to each of the classes in the high school and introduce them to the bottle of hand sanitizer I hope they become intimately acquainted with.... and I put up some really cute handwashing posters like this one:

hopefully they help to inspire some more kids to be more careful. 

Noah and I went to Vancouver for his regular treatment on Friday and I asked the Doctor about another MRI and he said that they don't normally re-scan the kids, but he will re-scan Noah's legs simply because he is curious about how much and how quickly his bones have healed.  He wants to wait until January or so to give them a good amount of time to heal up.  I am very curious too.  Noah is still not permitted to do any high impact activity, except a gentle jog, with strict instructions to stop immediately if he has any pain.  He has been feeling just fine, so I am assuming things are progressing nicely.  However, I have no idea what impact the chemo has on bone cells. I could be completely wrong.  I guess we'll have to wait.   
Don't worry - here have been good things happening too!  School started, and all of the kids, especially Noah, were excited to head back.

All of our kids are taking piano lessons, and all of them are playing hockey this season.  Emily and Noah are also playing on the school volleyball teams, so we are quite busy.  The hockey teams they play on only have about an hour or hour and a half of ice time per week, so it is a manageable amount of time, but we have been away a lot on the weekends for volleyball playdays, which doesn't make Tom very happy. 
He has been enjoying the lake this fall, catching a lot of rainbow trout on the fly. He is very funny: whenever we are in town or at school or doing something not at home, he complains about how much work he has to do (putting a new roof on the woodshed, cleaning the chimney, etc) but then as soon as he takes one look at that lake, he says, rather sheepishly, "or maybe I'll just go fishing..."  It is quite hilarious, and I don't begrudge him that one bit.  Sure, I have to scrape the windows in the morning because of all the wood in the carport that he has to split and put in the woodshed, but not until it has a new roof.... but oh well...  He won't be able to fly fish for much longer.

We were also quite busy with the Cops for Cancer Tour de North.  It is a cycling trip from Prince George to Prince Rupert that some RCMP officers from each town along the way participate in to raise money for Camp Goodtimes and other cancer supports from the Canadian Cancer Society.  Noah was the Jr. Team member, so he was in the newspaper, on the radio in Prince George, and part of the arrival event in Smithers. It was pretty cool.   

 

This is Henk Timmerman, the cyclist from Smithers, who invited Noah to be part of the team.  They raised over $275000!!  We had an event at our school that raised over $600 in 20 minutes: we sold pieces of duct tape in various lengths that the kids could use to tape the principal to the wall of the gym.  It was pretty awesome and the cyclists were very impressed with our school's spirit.

 

We have had a number of visitors to our yard and lake this fall, (starting with my gorgeous sister, Jenn and her two boys)  then this absolutely huge black bear, which Tom estimated at about 300 lbs.  When he stood on his hind legs to get the apples higher up, he was taller than me!

He was so cute...  Miranda named him Kyle.  : ) 

We have had tundra swans stop by on their way south, and just today, on our way home after school we saw this fella:

This one totally made Tom's week.  He LOVES owls. 
There have been other animals and birds, these are just the highlights... it has been really fun to get out the bird book that Tom's mom gave us years ago and to figure out that the kind of ducks that are on the lake right now are called Coots and there are Harriers and eagles, and so many more.  It is so great to live here.  We are blessed in so many ways. And yet...
Please continue to keep Noah in your prayers, we are now realizing how important it is to keep him healthy, and how difficult it is!
There are others who need your prayer as well.  Jordan, our friend from RMH desperately covets your prayers, and Justin, another boy from RMH  who had a brain tumour recently relapsed with tumours in his spine.  These two boys have both been told there is nothing more that can be done, but we know that Jesus is bigger than cancer, and nothing is too difficult for him!
Erin, Noah's good friend since he was born, was recently diagnosed with a serious heart condition, which could require her having a defibrillator implanted.  They find out on Wednesday. Please pray for wisdom and of course for healing for her.
Kaitlyn is in the Eating Disorder clinic at BC Children's hospital.  She is having a difficult time too.  Please pray for the walls she has built up to be torn down.  Please hold her family up as well.
There are so many hurting people...  such a broken world...  Come Lord Jesus. 

August 2012

Hi Everyone!  We finally got internet yesterday!!  I have been wanting to update y'all on what has been going on, but with no internet, it is kind of difficult....
We moved to a little slice of heaven here on earth.  We have been absolutely loving living on the lake; it has been so good for all of us to have this peaceful sanctuary as our home. We still can't believe we live here!

Noah and I went to Vancouver in July for treatments and also for an MRI of his knees, because we were concerned about the pain he was having while playing soccer.  At our appointment, he was laying inside the machine, wearing the coolest goggles ever ( they played a movie that he could watch while in the MRI!  ) while I sat outside of the red line lest my earrings etc, come flying out of my ears toward the massive magnet in the machine.  I saw the tech sitting behind her computer click, click, clicking away at the pictures, then something else caught my attention and I looked away.  Suddenly out of the corner of my eye, I could see a lot of activity in the little room- there were now three people in there, one person on the computer, one on the phone, one at another computer calling up some x rays that I could see were legs. Then she got a sheaf of papers and two of them looked at the papers and then at the xray then at the MRI screen and they were pointing at the screen and then at the xray, etc.  They were looking worried and scurrying around in the room.  I started to get a little worried, and then the first tech came out and said that the doctor had ordered x rays. Now I was really worried. 
Noah asked, "Didn't I already have xrays?" 
She looked startled. "You did? When?"
 I said, "In May."
She leaned in. "Did they do both legs, or just one?  Did they do the right leg?  Did they do the whole leg or did they do Femur, Knee, Tibia and Fibula?" 
Now I am starting to freak out.  I casually say to Noah, "Hmmm.... I wonder what's going on?" He just shrugs, and goes to get dressed.
In the Xray dept, it just gets worse.  They do front, back and side of his hip joint, his femur, his knee, tibia, fibula and ankle of both legs.  It takes forever, and the whole time the two x ray techs are whispering and pointing and comparing, etc. 
Now I am in full freak out.  My heart is pounding, my legs are shaking - what could everyone be so worried about?  Of course they are all "just" techs; they can't tell me anything, only a Dr. can tell me anything.... I just sat there and prayed and prayed until I felt calm(er).
I poked my head out of my little cubicle and asked, "Ummm, am I going to get to talk to someone about this?  'Cause I don't want to go home feeling the way I'm feeling right now."  Then, to make matters worse, she comes over and puts her hand on my shoulder. " I can totally understand that. I'll see if I can find a Doctor."  She was being so intentionally kind and sympathetic, that pushed me right off the edge.
The problem is, it is 5:45 on Friday afternoon. Everyone has gone home.  Thankfully there was one Radiologist who was still in a procedure, so when he was finished, he would look at the X rays, and talk to me about them. 
We had to wait until almost 7, but he did come and bring us back to the dark room where they look at the x rays on screens.  It was a really cool place.  He had been looking at Noah's x rays already, and he showed Noah all of his bones and joints, and in reply to my questions, said, "Well, nothing jumps out at me right now, but I will take a closer look at his previous x ray and compare them.  If I find anything, I will let the oncologist on call know, and he or she will relay the message."  That totally made me feel better. 
We didn't hear anything that weekend and actually, not until the next Thursday, when our nurse called to say that they had noticed "bony changes"  She hadn't seen any pictures or anything and our doctor was away, but when we came back in August, we would get to talk to someone about it. 
I was confused because the radiologist said he would check the x rays, and he didn`t see anything.  But that is because it doesn't really show up on x rays. This is what his MRI looks like. 

We now know why the MRI techs were so worried.  The big spot on the right tibia is avascular necrosis, or dead bone.  The other tibia is not as bad, but the femurs are both just as bad as the tibia in the photo. (I only took a picture of this one; our doc said he would email the rest to us, so I stopped taking photos, but I don`t have them yet, so I only have this one)
The good thing is that it is all in his bones, and not in his joints. If it was in his knee joints, we would be looking at bone graft surgery or possible knee replacements, so we are very thankful it is in his bones, because in bones, it acts more like a broken bone that can regenerate.
The bad thing is that as you can see in the picture, the damage is extremely close to the growth plate (the arrow is pointing to the black line that is the growth plate).  If the growth plate is damaged, his right leg may not grow as quickly or as long as the left leg.  If that happens, they can fix it, but it is quite invasive and involves a leg-stretching brace that is screwed into his femur and tibia, so we would like to avoid that, if we can. 
It will take a while for the bone to fully regenerate, so for the next few months he has to take it easy, and not do any high impact stuff. He will be lucky - he can play volleyball as long as he doesn`t jump too much, but he isn`t allowed to run lines.  Hopefully by the time basketball season starts he will be able to play.  Our Doctor wasn`t really keen on it, but we`ll see.  Thankfully the things he can do and that are really good for him to do, like swimming, he can do daily, now that we live on the lake. Skating is also good, so he will be able to play hockey and skate on the lake when it freezes this winter. 
He no longer has pain when he runs a bit, and the doctors have stopped the Prednisone, the drug that causes Avascular necrosis, so it shouldn`t get any worse.  I don`t know what the long term implications of stopping the Prednisone are, but maybe after the MRI in the fall shows a fully healed bone, they will re start it. 
Apparently they are realizing that Avascular necrosis is a wide-spread problem in kids with ALL, and the Child Oncology Group is trying to come up with a policy and a strategy to deal with it.  Dr Lucy said that if they did MRIs on all the kids, a lot of them would have it.
So we are asking you to please join us in prayer and our prayer request is that his bones would heal up quickly and that there would be no damage to the growth plate on his tibia.  Thanks so much for reading and for your support - we really appreciate it!

Again, it has been a long time, which is, by my estimation, a good thing, right?  Kind of along the lines of "No news is good news"...  
And it has been mostly good.  It is July 6, and we are moving today.  One of the things we have been very busy with is buying a house!  We have bought a house on a small lake about 20 east of Smithers, so our new address is now in Telkwa.  Weird.  I never in a million years thought I would live in Telkwa.  A huge reason that we have decided to move is because of Noah.  He has become interested in Bowshooting and other outdoor pursuits and this place has a bit of property and a perfect place to set up targets, etc.  And it has a lake.  We received some money recently which we used to buy a couple of kayaks, which the kids, particularly Emily and Noah are excited about.  We have always wanted to move out of town and when this came up, we decided that life is too short, and if an opportunity like this comes up,  we can't turn it down.  It has a lake. It will be VERY different - no high speed internet, which will be a huge adjustment for all of us; we don't have cable and out kids have been watching all of their tv online and actually so has Tom, with all of his sports.  we are hoping the TV antenna works so that we can watch the Olympics. Oh, and a 20 minute drive in to town, which is a big deal here.  People are always saying, "You're moving all the way out there???"  I have to remind them and myself that if we were in a city, we would think nothing of driving 20 minutes to work every day.  In fact, in places like Vancouver, if you only have to drive 20 minutes to work, you have a pretty sweet deal going on! But, it will be totally worth it. Did I mention it has a lake? With a dock and a slide?
As far as Noah is concerned, everything is really going well. He had his first treatment here at our hospital and it went well, so that is a huge relief.  The Clinic here is a very calm, realaxing space; they have worked hard to decorate it so that there is a calming atmosphere, which, quite honestly took my by surprise, because isn't this a hospital??? 
The only thing they need to work on is communication between the admitting guy and the emerg triage nurse.  We did have an incident when Noah had a fever, and the guy didn't pass on the info that Noah has Leukemia, so when the nurse came out, to see who was next, she took everyone else first, including the guy who needed 2 stitches in his foot.  : S  She was kind of looking at me like, "oh, THAT mom, the one who brings her kid in to emerg because they have a fever. *roll eyes*  hover mother..."  The cool thing that happened was that when we got there, I posted it on facebook and immediately people started posting that they were praying for the fever to go down, and it did!  we sat there for a while, and by the time an hour and a half was up, he was down to 37.4! It was so cool.  When we decided to go home again without being seen, I told the nurse that his fever was down so we were leaving. She asked me if he had any other symptoms, and I told her, no, but he has Leukemia. Her eyes got big and she turned kind of white.  Apparently, there is a protocol in place that says that if Noah shows up at emerg with a fever, he is supposed to be seen within  15 minutes.  That only works if the guy at the front desk actually tells them he has Leukemia.  Grrr. 
I have learned two lessons here:
1. Prayer is powerful and God heals.
2. I need to be more assertive and advocate more forcefully because people don't know.
 \
Noah even played soccer. His knees were sore and his ankles are stiff from chemo and from sitting around for a year, so his first practice and games were painful for him. And painful for us to watch, actually - he runs like a little old man, lol!  He was very tired at the beginning, but as the season went on, his ankles loosened up, endurance improved, and so did his skill.  He even scored a goal in the very last game.

Noah has been doing so well, in fact that we sent him to Edmonton for a week with my parents!  Alone. Without me.  It was very weird. I sent him with very detailed instructions for all of his chemo meds and all of the doses pre-measured, and very detailed instructions for what to do if he got a fever, etc. I will say that as they were leaving, it seemed he and I both had the same thought - he looked at me with an expression that said, is this a good idea? I was thinking the same thing, lol!
It all ended up being fine.  He had a blast, visiting with all of his cousins there, he had his 12th birthday there, and was pretty well spoiled by everyone.  He is completely exhausted and getting sick,  I think (he started sneezing on the way home yesterday), but I am pretty sure he would say it was totally worth it.  Hopefully he can fight it off soon; we are supposed to go to Vancouver and stay at RMH next week Friday!
He will have an MRI on Friday to see if the knee pain he was having while running is related to chemo, and hopefully we will see Jasper. It is possible that we won't be able to see him, or only if he isn't sick at all, because Jasper has had a stem cell transplant, and is in strict isolation. 

I do have some sad news to report, last week little Lucas went into the hospital in Vernon, and on Wednesday, he passed away.  Thank you for your thoughts and prayers. Please continue to pray for his parents, Christian and Nilva, for comfort and peace.
 
Other than that, we have just been living life.  Emily's leg is healing quite nicely, she is on week 4 of the airboot after 6 weeks in a thigh -high cast.  All of our kids did well in school -especially Emily, with straight As, so we are pretty proud of her.  She won a number of academic awards, so that was pretty cool. 
I should get back to packing.... ugh.  We are supposed to be out of here by noon and if that happens it will be a miracle.  Next post will be showing all y`all the pics of our new place!
Take care,

Maintenance month 1 - done!

Sorry about the length of time between posts - we have been busy living our normal life!  : ) 

We went to Vancouver on May 18, just for the day, which was so weird; we flew out in the morning and came home on the evening flight!   Noah had a cold, so we couldn't stay overnight at RMH, and when we were at the hospital he was in isolation.

Jasper came to visit and they both had to wear masks to protect Jasper, because he was going to have his brain tumour removed tomorrow, and a cold is the last things he would need!  However, God worked a healing miracle, and Jasper is no longer going to be having surgery tomorrow!  This is what his dad, Stephen wrote on Facebook just a few minutes ago:

Miracle.
Jasper had an MRI scan late this afternoon to help map the surgery tomorrow. The MRI shows the tumour/scar tissue is 5% the size it originally was. It is the same size as the blood vessels around it! Kinda risky to go after something so small which could all be scar tissue anyways.
So no surgery! We are down to a single round of chemotherapy.
Thanks for your prayers everyone.

Isn't that just so awesome??? I am so excited! They are very relieved.  We thank God for this healing!

Anyway, back to Noah... (lol)

He had bloodwork done the week before going to Vancouver because he needed to go to the dentist; we thought he had a cavity since his tooth was really hurting him, and had been for a long time.  Going to the dentist is a rather lengthy ordeal: he first has to have bloodwork to make sure he has enough platelets in case his mouth bleeds, and also that his immunity is high enough to withstand having someone poke around in his mouth and he needs to take a crazy amount of antibiotics one hour before his appointment- he had seven (yes, 7) 250mg capsules of amoxil!  I was surprised how much it was, and so was our family doctor, she called Children's to make sure the dose was correct - she didn't believe it at first : )  Five minutes in, they realized he needed a tooth pulled. He still has a lot of his baby teeth, especially molars, and this one needed pulling.  That really caused a stir - are they ALLOWED to pull teeth during treatment? I mean he isn't even allowed to floss!  I called our nurse and she said if it was a baby tooth and he had the antibiotics, it was ok.  Whew!  He was quite nervous, but it took longer to give the freezing than actually pull the tooth!  His reaction and his relief was really cute.

So we knew when we went to Vancouver that his counts were pretty low.  Actually they were very low, and what they do in Maintenance when a kid's counts are low is take them off of all chemo that would make the counts go down.  So for the next week, instead of taking Methotrexate, and 6MP, he was only on Prednisone, since that is supposed to make his counts go up.  Only they didn`t; when he went for bloodwork this past Friday, they are still too low for any chemo.  He is to go for bloodwork again this Friday and we`ll see if they went up at all so we can start again.  Apparently it is quite common for kids in the first few weeks/ months of Maintenance to be off chemo for up to five weeks.  Hopefully his counts go up soon.  On the other hand, he is feeling really good, except that he STILL has that cold and has since about the second week of April! 

He has also been playing soccer and loving it (here he is, # 9)

but has had a bit of trouble with his knees and ankles being stiff and sore, which can be a side effect of Vincristine, one of his chemo drugs.  We mentioned it to the doctor when we were in Vancouver, and the doctor who was seeing him sent him for x rays right away and booked an MRI on his knees for the next time we are there.  I was quite taken aback at his level of concern and thought he was going a bit over board when our nurse informed me that the steroids that are so awesome at killing cancer cells can also cause Avascular Necrosis, which is bone death, usually at joints.  Great.  Thankfully his xrays didn't show any damage, so if there is any necrosis, it isn't too advanced, but we'll have to see what the MRI shows. 

Not too sure when that will be- could be June 15 or July 13- we are going to try Septra, the antibiotic  that he couldn't take at the beginning.  The pentamidine treatments are getting more and more difficult for him so his doctor thought he might try the oral antibiotic again, that maybe last March his body was just in shock from all the chemo, etc, that he couldn't take the Septra.  As soon as his counts are up he'll try a few days, and see how it goes.  If it goes well, we go in July, if not, we will be there in June. What this also means is that if he can take the Septra, we don't have to go back to Vancouver every month, only the ones where he will have an LP, which will be every three months after a while.  The rest of the treatments can be done here at our hospital in Smithers.  That would be So. Awesome. 

It is getting to be bed time so I will write about the Relay for Life that took place here on Saturday and also the results of the Leukemia/Lymphoma fundraiser in the next post.  Until then... 

Please pray for our other friends who are desperate for the same miraculous healing that Jasper received.

Jordan, age 14, has been diagnosed with a very agressive bone cancer and has only been given months to live by his doctors, but his parents are believing that cancer is not God's will for his people, and have taken him to Texas to a healing room.  Their blog:  www.jordanshealing.blogspot.ca  there is a very helpful section entitled "how to pray".

And also for Lucas, a 15 month old baby with a rare liver cancer.  He has had a lot of chemo and also had his tumour removed, but it has since come back and also spread to his lungs.  His parents are desperate, and seeking any advice, and covet your prayers.  Their website:   http://christiannilvaandluc.wix.com/asfund#!home/mainPage 

These two boys and their families are constantly in my thoughts and prayers....  please remember them in yours.

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.....

it's been a long time...

Sorry for the long break again, not sure why I haven't written; we haven't been especially busy and we could have actually used your prayers....
We have been home since the 19th of February, and we were greeted at the airport by a coughing Alyson.  Awesome.
 There were a lot of things going on last weekend: Emily's basketball team had zones (they came in 3rd, which was great) Miranda went to Fraser Lake for a Girl's Hockey Jamboree which was a lot of fun (or so I hear) and Alyson was supposed to go to Rough Acres Bible Camp for a GEMS (our church's girl's club) rally.  She was coughing like crazy, so she really should have stayed home, but I had to make a choice: she could go and cough all over everyone at the rally, or she could stay home and cough all over Noah.  I chose to send her away.  I did send her with a lot of cough medicine and Halls, etc, so hopefully she didn't infect too many people.  When I was at Safeway buying those things, I ended up in line behind a doctor who goes to our church.  I told him of my dilemma, and he told me, "That is a smart mother's decision." Phew!  I was happy he agreed, although I did feel a bit (a lot) guilty, lol!  Turns out it didn't make much of a difference.  He still got the cold.  He is now coughing and has a runny nose.  Rats. 
At least he isn't still so sad and grumpy from the Dexamethasone he was taking last week.  It was pretty brutal, but the worst part was that he was in quite a lot of pain.  On Thursday night he woke up twice in the night for Morphine so he could sleep, and the dosage didn't cover the pain in his hips, knees and shoulders so on the advice of his doctor I upped his meds to 10 mg of Morphine every 4 hrs, which is a lot, I think.  It mostly helped, at least he could sleep! He looked so pale, weak and tired that I was sure he was in need of a transfusion, but his counts ended up being fine when I brought him for bloodwork.  He was relieved; he would much rather have transfusions in Vancouver if it can be helped.  The nurse thought he probably looked so pale because of the pain he was in.  I was very happy to be finished the Dex on Friday.  It's  nasty.
On Saturday night, we had friends over for dinner and to play cards; it was so much fun! Part way through the evening, however, Noah complained that he thought he had a fever, so we took his temperature and yes indeed, he was at 38.5.  Tom and I debated what to do. If we brought him in, they would put him on antibiotics, which we thought wouldn't be appropriate, because it is most likely viral, so (shhh!... don't tell anyone...) we didn't bring him in.  We just thought that since it is likely viral, antibiotics wouldn't help anyway and he would end up with c. Diff again, which we all agreed wouldn't be worth it.  I do think it was the right decision - so far. He had a fever for that night, but when he woke up, he was down to 37.3, which is still high for him, but not technically a fever.  We also decided that if he spiked again, we would bring him in, but so far he hasn't.  He just has a cold and feels terrible.  Poor guy.  He also has a bit of pain in his leg and his hands are kinda shaky. His math homework this morning is pretty messy! I feel bad for him, and I hope he gets over it quickly.  Please pray for healing for him. 
Miranda had a fever yesterday too, so she stayed home yesterday and today, though she is feeling much better today. It seems to have hit Noah harder than Miranda,  but she is coughing too.... I have been taking my vitamins and Cold FX so that I don't get it!  Noah has to go in for bloodwork tomorrow to see if we are to go back to Vancouver on Thursday.  As it stands right now, he can't go to RMH, so I am kinda hoping he will be delayed... partly because I don't feel like staying somewhere else and moving, etc, but mostly because it would be nice if he was feeling 100% before they slam him with more chemo. 
It has been a pretty poor break in terms of homework; usually when we are home, Noah is feeling well, so he gets a lot of work done where there aren't as many distractions.  He has been feeling so bad these last weeks, the only thing I can motivate him to do is read.  I make him do math too, but he does that under much protest and with me sitting right beside him, prompting him and sometimes even writing the answers for him.  He has almost finished reading his Socials text book and is going to start working on his Science text next.

I have had a few people ask me about the ad - here is a photo of Noah's hot Valentine's date with the Sedins (and 6 other kids) 

He ended up right between them!  He was so cute. They mostly just had to sit and smile while Daniel and Henrik said things like, "So show the heart of a Canuck!" or "Remember what's important first!" (they told us that would make sense in the context of the segment) One time all the kids had to say something together like, "We're all part of the same family - a big happy one!"  They filmed for about 45 minutes.  The Sedins were pretty great; at one point Daniel Sedin (on the right)  turned to Noah and asked, "That was pretty good, eh?" and Henrik asked, "Did I do better than Dan?"  Then when it was all over, we had some time to take photos and they had cards to sign for the kids.  Well, at least Henrik had cards - instead of taking a stack of #22 cards, his publicist had picked up a stack of #21 cards!  So Daniel Sedin handed out Mason Raymond cards, lol!  It was pretty funny.  Noah actually got one of Henrik's cards with both of their autographs on it, which is rare, so that was cool.  The segment will be aired during the Canucks for Kids telethon which is March 8th.  I think I will be able to find the clip online for those of you who don't live in BC or don 't want to watch the whole thing.  I will post it when it is online. 

They did remember Noah from the scarf thing - when he went to sit by them, one said, "Ohhh nooo!" it was funny, and thankfully not too embarrassing for Noah; he was really worried they would make a big deal and say he couldn't be in the ad, etc. All in all it was just a good time. Tom said, "It is getting harder and harder to hate those guys..." (The Canucks)  lol.

This is Daniel Sedin.

And this is Henrik.

Well my two sickos are finally feeling hungry and they are pestering me to make lunch so I should probably do that.  Oh, that reminds me - Noah has gained over 15 lbs these last three weeks!  He weighed himself and he was 80.2 lbs or 36.5 kg!  When we arrived in Vancouver at the beginning of Feb., he was 31.0 kg.  He has been eating non-stop, so I'm not surprised. His face is all puffy again, which he feels quite self-conscious about, but it won't last too long.  I hope that extra weight helps him weather the nasty stuff coming up.  He discovered yesterday that his hair is falling out again too.  He thinks it is pretty funny to pull out these big clumps... he just laughs.... what a goof.  At least he is laughing and not crying, right? 

I can't wait until all this is over.

   

this week was ok....

...surprisingly.  Noah was on Dexamethasone, so he was pretty emotional.  There were a few times where he would leave the room and when I found him upstairs he was crying.  I asked him what was wrong and he just cried and said, " I don't knoooowwww!" : (
That was hard.

One of the the redeeming things that happened was that he is eating. A lot.  Yesterday he even ate french fries.  That is seriously a big deal.  He has never eaten an entire order of french fries in his life.  He hates french fries. But when you're hungry, you'll almost try anything, right?  I was impressed.  He has gained 2.5 kg, or about 5 lbs this week, so that is very good.  He even got up at midnight the other day and made himself a sandwich!  This is behavior I have never seen from him - it is so weird..... Everything is about food. We are planning to go to the Star Wars movie this afternoon and the first thing he asked was, "Can we get popcorn there? A big bag?" lol....

The other big thing is that a friend was very generous. There is another family (the Mohans) at RMH with a son close to Noah's age and they have become good friends.  They decided to buy their son a RC car and thought it would be even more fun if they bought one for Noah too.  It is the coolest thing ever - it can go 35 MPH and do donuts and climb over roots and curbs and take jumps, etc.  It has been so much fun! He was a bit worried that he would break it, but even when he did, it was ok.  Apparently these things are made to be rebuilt and customized and broken and fixed, so the parts are quite easy to find.  Thank you to my Uncle Ken who fixed it.  It has definitely made Noah's week.  Everyday he looks forward to driving it.  The first thing he does every morning is take it out and look at it.  He is so cute.

We had a wonderful visit with my good friend Elaine yesterday.  It is so nice to get visitors from home... sigh.  Especially when they bring Valentine's day gifts from my husband.  : )  I got a beautiful ring.  Then I got called a chump for opening it before Valentine's day, lol!  Thanks anyway honey, it was worth it!

So, it looks like Noah might make it onto the jumbotron again - the BC Children's Hospital Foundation just called and asked if Noah wants to be in a Public Service Announcement with Daniel and Henrik Sedin for Canucks for Kids.   They are going to shoot it tomorrow night here at the hospital.  Cool, eh? I will let you all know when it is up on the website.  I suppose it might even be on TV.  He is so funny- he doesn't want to jeopardize his reputation as a staunch Oiler fan, but he can't very well wear his Oiler hat on a Canucks for Kids ad, so he would like me to remind everyone that it is Canucks for Kids, NOT Kids for Canucks, and while he is very happy about how amazingly generous the Canucks have been, they are not his favourite team. We were joking with a friend who is also an Oiler fan this afternoon about this, and Stephan had a good idea: it could be a fundraising gimmick - how much will it take for Noah to take his Oiler hat off? If people donated a certain amount of money would he be willing to wear the Canucks hat? He says he cannot be bought.  But wouldn't that be fun?

Another good thing is that the Dexamethasone, while making him sad, did a good thing - it made his counts go up significantly!  Normally, when he goes for blood work, they are looking for his white cell count and his neutrophils (the infection fighting cells) to be at 0.75 or higher. Well, he started with pretty high counts (3.2 or something) because we had been home for 16 days with no chemo, but on Friday I was totally taken aback when the Dr. handed me his counts - his WBC was 13.2 and it is mostly neutrophils, they were 12.4 or something crazy like that!  He has taken to calling himself Immuno-Man!  He has more immunity than any normal human.  Funny.  The counts will go down as the Doxorubicin he gets on Fridays starts to win out over the Dex.  But it has been good; we went skating on Saturday with my Uncle and some friends and when Noah was thirsty, I pointed him to the water fountain, which is usually off limits for him and said, You're Immuno-Man, aren't you? You can get a drink there!  It was great!

Well, it is time to go - he is all finished his chemo for the day, and we are going to the movie!  I hope you are all well, and thanks for yours prayers and support... it makes a big difference - God is so good, he has been carrying us through this week and showed us His love through the kindness and generosity of friends.

Off to Vancouver tomorrow

yep, we are going back to Vancouver in the morning.  Yesterday Noah went for bloodwork and his counts (not surprisingly) were very good.  I was a bit worried about his hemoglobin, because he looks quite pale, but it was 120, which is just fine, so that was a relief. 
Anyway, I haven't quite finished packing, so I should probably do that.... please pray that the Doxorubicin he gets tomorrow won't make him puke tooooo much.... he hates that.  ; )

It is so good to be home...

Hi everyone, yes, we have been home for almost a week now, and I just thought I should let you all know that we are doing well.  Noah is feeling fine and eating a lot (he just weighed himself and he is up to 32 kg, or 64 lbs) so that is good.  He says, " I don't know why, but whenever I am here I have a craving for Salami and cheese sandwiches!" I don't know why either, but I don't care - eat up!  It is good to see. 
His counts are ok, I think, so he will spend a bit of time at school this week. Yesterday he presented his Science project to his classmates, and it went well.  I was quite relieved, to say the least.  This week is Grandparent's Day, and he will be able to participate in a play his class is putting on, which makes him very happy. 
The time here is always so full;  the girls are involved in a lot of different activities, like hockey, piano, dance, basketball, and GEMS. It is so busy, the time goes by really quickly. 
I try hard to enjoy it, but honestly, I have a hard time switching gears from being the (pampered) mother of one extremely obedient child (he does everything I ask him to pretty well right away) to the wife and mother of four children (not exactly disobedient, but they are used to having a lot of freedom while I am away).  I suddenly have to do all the cooking, laundry and driving that I used to do -and also the listening- that I am no longer used to doing. For example, I really love Alyson a lot, but she has a lot of energy and needs a lot of attention, and it takes me a bit to get used to her again.  AND she is extremely messy!!!  Sorry sweetie, but.... : ) I have said it many times, it is a good thing for her that she is so cute, lol!
We were able to go to Houston to watch Emily play basketball on Saturday which was great - she is really quite good- and this weekend the play day is in Terrace, so if the roads are ok, we will be heading there to watch her play against my old school, Skeena.  It should be a lot of fun.  For those of you who are not northerners, we don`t have games during the week, all the teams go to a different town each weekend for a playday to play against all the other teams.  It is basically a tournament every weekend. Last weekend BVCS played Smithers Secondary and Houston Secondary, and this week in Terrace there will be teams from Terrace, Hazelton, Smithers and Prince Rupert. It makes for a busy season, but can be a lot of fun.
We have quite a long break now ( 16 days!); we arrived in Smithers last week Wednesday evening, and Noah doesn`t have any appointments until next week Friday! Of course, it is dependent on his Feb 1st blood work, but I really can`t see his counts being too low. I guess you never know...
When he does go back, he will begin the last `heavy`round of treatment.  He will get Doxorubicin and the dreaded Dexamethasone.  The Dex I am not looking forward to.  The Doxo nausea is usually manageable, but the emotional rollercoaster of the Dex is so draining.  I hope it won`t be as bad as last time....  Please pray that his emotions will be fairly constant during that time.  I just feel so bad for him when he feels sad and there is nothing anyone can do to help.
Oh and while you are praying - our friends` 2 yr old daughter is in dire need of prayer. She has a viral Encephalitis and has had a lot of seizures and very high fevers. Basically a virus is attacking her brain.  Her name is Keira, and her parents Clint and Sharon used to live in Smithers and teach at our school. They are now living in Indonesia, but Keira has now been transferred to Singapore to receive care and she is in ICU there.  This is very serious and could have long term implications.  Right now they are asking for a miracle.  Please join me in praying to our loving, able God, for whom nothing is impossible that she would be completely restored to full health.  Thank you. 

"That was EASILY the best Erwinia I have ever had!"

That is what he said.
Which could be due to the fact that he was kind of high at the time....
You see, a parent had said that I should give him Morphine to help with the pain, and then a different parent told me I should give him Nabilone, to help with the anxiety.  Nabilone is the anti-nausea drug that is a synthetic Marijuana, and Morphine is a pretty powerful pain med.  Apparently when you give them together, it makes your kid fly..... then puke.  The nurse, who was trying to make me feel better, told me that people give these drugs together all the time, and it wasn't that big of a deal. Noah, however,  is quite sensitive to drugs, as we now know, and it hit him within minutes. I dropped him off at the clinic, went to find a parking spot, and when I came back, he was sitting on a chair with his head in his hands, saying, "My head feels funny..." I actually found it fairly humourous, until he started feeling nauseous.  Thankfully, puking makes him feel better, so after that he was fine.  A little chatty, but fine, nonetheless.  ; p  He also had the munchies, which is one side effect I can get behind!  He ate more yesterday than he has in a long time.

I do think I will continue to give him Nabilone daily, even when he isn't feeling ill, and I will give him Morphine on the days he has erwinia, just not at the same time.

We also had a little adventure with his VAD.  He doesn't mind being "accessed", (putting the needle into his port) so they often de-access him if they won't need the IV line for a few days.  He decided because it was less hassle to just leave it, that he would stay accessed until Monday. I will post a picture so you can see that they put the needle in, then they cover the whole area with Tegaderm.

 Noah's skin doesn't like Tegaderm- it gets all red and itchy, so at around 10:30 last night he wanted it off.  I asked him if he wanted me to bring him in to the hospital so they could de-access him, but he said no.  So I offered to do it myself. I mean, I have seen them do it hundreds of times how hard could it be- really? They actually showed me how, once, in case I needed to do it. He wasn't really keen on it, but he decided to let me do it. So he pulled the dressing off and I tried to pull it out.  I knew there was something to do with pushing the two parts together, or pulling them apart, but I couldn't figure it out.   Meanwhile, my son who is a bit of a bone-rack, is sitting shirtless with a needle and line sticking precariously out of his chest  in the kitchen at 10:45 at night, with a couple of mothers giving advice.  I don't know what I was thinking,  really.  Anyway, he finally says to me, "Can you just call the hospital and ask them how?" So I called them and explained how I felt really stupid, but I had halfway de-accessed my son, but I couldn't actually get the needle out, blah blah blah...and they told me I had to hold the bottom part (the two clear "wings " you can see in the picture, if you look closely) down onto his chest, then collapse the black "wings" and pull up until I hear a click and it will pull right out.  Then she said, "Who is it?" I almost told them a different name.  It was close.  But in the end, I thought, oh well, if it gets infected, they will know about it anyway, right?  I was very careful: I washed my hands, I swabbed the area with alcohol before and after, so I am fairly confident it will be ok.
I think.

Maybe you could pray for that too?