too long between posts - so much to tell....

I would like to apologize - I didn't realize how long it has been.  This week went by so quickly; since arriving home on Monday night we have had a piano recital, a Christmas Concert, a staff party and a LOT of homework! 
Monday was the best day Noah has had in a long time, not in terms of treatment, but in fun.  Many of you may have already seen the photos from the Canucks website, but I'll post them anyway (and a few more later).

Brittany's mom, Shawna met Daniel Sedin at Safeway last week and he let slip that he and his brother were going to be at the hospital on Monday, so we were pretty excited, thinking we might get to meet them and add their autographs to Dan Hamhuis' on Noah's jersey.  We made sure to bring it and a sharpie to Noah's appointment so in case we saw them we would be ready.  Well, it turned out the entire team came to the hospital!  We went up to 3B (the oncology ward) and right away we met the first group, which consisted of Daniel and Henrik Sedin, Mason Raymond, Jannik Hansen and some others I can't remember.  Noah was wearing his Oilers hat, so he took quite a bit of ribbing, but it got worse when Daniel Sedin found his Oilers scarf in his backpack too!  It was so hilarious - I think he had forgotten it was in there; we had been packing to go home that afternoon and he threw a bunch of stuff into his backpack, including his Oilers scarf.  We left that group, and the first thing he said was, "Mom! Why didn't you close my backpack?!?"  LOL. 

The next thing that happened was so surprising I didn't take any pics of that group at all: Kevin Bieksa walked up to Noah and said, "What is this... an Oilers hat!!!" And with that he proceeded to pretend to put Noah into a headlock and punch him, then grabbed him by the shoulders and pretended to knee him in the stomach.  So. Funny.
After that we met up with Dan Hamhuis, and he was so awesome - he introduced Noah to everyone and  made sure he got their autographs.  Noah was so happy, even though every one of them teased him about his hat. (that may have even had something to do with it : )  Actually, Roberto Luongo didn't tease him; he told Noah that he really loved the Oilers when he was a kid too.  It was great.  Finn, the Orca Whale mascot was there too and I took a lot of photos of them together.  Finn ate Noah's hat and bit his head, which was a highlight of the afternoon. Noah says that if you're bald, it kinda hurts, lol!  The Canucks photographer  took a lot of photos of Dan and Noah with his Canucks jersey on (and no Oilers hat). It was so cool.  He ended up with every single Canuck's autograph both on their hockey cards and on his jersey.  Pretty awesome....  Thanks Dan.  You made his day (week, month, year...). 

Our flight that evening was delayed two hours and then it was the most turbulent flight I have ever experienced; everyone was silently holding on to the seat in front of them with a white-knuckle grip.  :S   
It felt like forever, and I felt so ill when we finally landed... Yuck.  I hope we never have that again...

On Wednesday night our girls had their piano recital. I am so happy that we could be home for that, we missed the last one.  They did so well!  Miranda played a duet with her best friend, and they were so proud of getting through with no mistakes! It was awesome! Emily played in a quartet, which amazes me - four people playing on the same piano... crazy.  Also great.  And Alyson also did very well. She was happy that she was the second person to play, so she could get it over with. : ) I totally understand. 

Thursday Noah received the laptop that he qualified for under the Special Education Technology program.  He can download his textbooks so we don't have to carry so many books with us when we go to Vancouver, and he can do his projects and research, etc on it.  It is very nice, and quite small, so it will be easy to transport.  He is very pleased, and has already done some work setting up a power point presentation using custom animation. It makes me dizzy, but he likes it....

Friday was the Christmas Concert. Noah picked up the trumpet very quickly in September so he was fairly well prepared to rejoin the band for the concert.  Having VOD affected his lung capacity, so he had to practice a lot this week to be able to play an entire song, but he did great!

Here is the trumpet section of the band.  They were awesome.  So loud! 

We have had a crazy week what with practices, birthday parties, playdates, but there is no place I'd rather be!  It is good to be home.

We will have to go back to Vancouver on Thursday for treatment, just for the day. Then, however, we will go our separate ways: Noah will go home and I will fly to Edmonton to meet my new nephew and see all the family there.  I am very excited; it all came together quite suddenly this afternoon. 
Also a huge thank you to Pharmasave Smithers for their wonderful gift to us (and the delicious baking...).
Actually, we have received a lot of baking this week, thank you to all of you who continue to feed us and fill our freezer with treats! (I will have a hard time staying away...)

Brittany is doing great!

The surgery was about 7 hrs long, and they kept her asleep until this morning. They wanted her to "sleep" more because she started to get a bit of a fever and the right side of her heart wasn't as strong as they wanted it to be.  They got all that figured out, I guess, because they woke her up today and this evening they removed the chest tubes and the breathing tube!  I hear that is early, so that is very positive. Her family is hoping that she can be moved from St. Paul's hospital back to Children's soon, because St. Paul's isn't set up as well for families as Children's is, and the parking is crazy - today it cost tehm $23.50 to park there!  Hospital parking is just ridiculous. And yes, it should be free.  Or at least they shouldn't be so quick to hand out tickets.
Anyway, they expect her to be in the hospital for about 10 days to two weeks, then she has to be here at RMH for about three months before she can go home. Pretty cool that hearts can be transplanted...
They deduced from things the Dr. said that the donor was a young male and somehow through the magic of google they found a 20 yr old guy who died in Edmonton.  They don't know for sure if it was his heart, but if it is, they are very thankful and would love to meet the family. The whole thing is just so fascinating to me....
Noah and I are fine, we went to the clinic this morning for his last shots of this round, which went well.  He puts EMLA on his legs 2 hrs before we go to clinic to numb his skin so he can't feel anything - he prefers it to be on for at least 2 hrs, but less than 3. If it is on for more than 3 hrs, it starts to irritate your skin, and it kinda loses its effectiveness.  Every time we went this week, the EMLA was on for at least 3 hrs, because they were busy, or the bloodwork had to happen upstairs in the lab, instead of the clinic, etc, so he has been kind of worried every time.  This morning was the first time he said ow, but he still considered it to have gone well, so that is good. if he says it was fine, I will take it, even though it didn't look like it went well to me.  I mean, he was brave, he didn't cry or freak out, so that is good, but he was saying it was hurting while the drug went into his legs.  He did relax when it was all over, and then I could see how tense he was.  He is amazing - he rarely complains about anything.... so brave!
This afternoon we did some special schooling, I mean, we went on our 2nd field trip to the Museum of Anthropology at UBC. It is such a cool place.  I would go back every day - there is so much to see there.  We ended up having a personal guided tour of the Northwest Coast exhibit, so that was really awesome. 
Ok, I am trying to type and I am yawning so much my eyes are watering and I can't see anymore. 
Tomorrow the Green Men are coming back here with some huge penguins (Happy Feet characters), the house is getting decorated on Sunday and  we have heard a rumour that some of the Canucks are going to be at he hospital on Monday, so there is a lot to look forward to in the next couple of days.... I'll keep you posted!

Staying a few more days...

This week has been fairly uneventful, which is good for Noah, but bad for all you 2000 action-seeking people who checked the blog since I wrote last... (or maybe it is just my mom and my grandma checking 1000 times each, lol) We did get some surprise tickets to the Canucks game last night so that was fun.  Thank you Joann Malhotra, we had a hoot, and the seats were great (row 11!)!  We also had a bit of a Grey Cup party here at RMH: we invited my cousin Meagan and her boyfriend, Darren to come and watch it on the big TV here and we had pizza and other yummy food. It was a lot of fun, AND the home team won - much to Noah's chagrin.  Yes, he was cheering for Winnipeg. Not just to be contrary, he has actually been following them and cheering for them all season, and he was very happy they had made it to the Grey Cup.  He had to explain that a lot last week; people thought that he was just doing it to be difficult, lol!  He even has a Blue Bomber that my dad built for him. It is pretty sweet, all blue and gold, with big missile launchers under the wings....
But the best thing that happened this week happened today. Brittany is a 13 yr old girl staying at RMH with her family who has been waiting for a heart transplant for 8 months and in the interim has had a very cool machine called an L-VAD put in place. It is a machine that pumps her blood for her - she has been carrying her "heart" around in a little bag for the last few months... technology is so amazing!  Anyway she received word this afternoon that a heart has become available! She went to the hospital to be prepped for surgery and to have her first round of anti-rejection drugs, etc, today and is just waiting for the heart to arrive.  She goes in at 5 am.  They expect the surgery to be around 9 hrs, so please pray for the surgery to go well and that her body would not reject this heart.  Please pray for her family, who are dealing with a lot of different emotions right now and are feeling a bit strange, as you may imagine.  Please pray for the donor family as well- they must be going through a very tough time right now, though we are thankful they decided to donate their loved one's organs; many lives are being changed as a result of this person's death.  I will let you all know how it turns out.  Her recovery will be about 2 wks in the hospital and then 3 months here at RMH before she can go home to Oliver.
Speaking of going home, originally, we were going to be going home on Friday, but now it looks like we will be staying until Monday evening.  Dr. Davis would like to get started on Interim Maintenance II, since Noah's counts are high enough to get going and we are here anyway.  It begins with an LP and then VinCRIStine and Methotrexate on Monday, then we can go home!  We will be home to see piano recitals, band concerts, and lots of other things, too.  : )
We found out today what the next few months are going to look like in terms of chemo.  Dr. Davis printed off a calendar of December and January and we tried to map out Noah's treatments and when and where they will happen. The next phase of treatment is similar to what he did in the summer, where he had to go in every 14 days. This one he has to have treatment every 10 days in December and January, with 2 rounds of the Erwinia injections - one in each month.  Since Erwinia is the reason we are here right now, Dr. Davis has decided to skip the next round of injections, which would begin on Tuesday, and just do the one later on.  The reason we are debating where to do this is that the drugs he would be getting are ones the chemo nurses administer frequently to adults in Smithers and they would both be done in less than an hour, so it seems sort of silly to travel to Vancouver for that.  He has also had them both many times with no serious adverse reactions besides mouth sores, and now we know how to prevent those.
The GP-O doctors are not all convinced that it is a good idea to treat him anywhere but at Children's, but Dr. Davis is kind of pushing for it for the next treatment in Dec, one in January, and also for some of his treatments during Maintenance, which will begin in April.  Apparently he has been in discussion with Drs. Hart (not in agreement) and Moisey (willing to at least look into the idea) about having treatments in Smithers. Tom and I are of two minds about this. It would be nice to be home for a longer period of time in Dec., but we kinda like the idea of staying where they know Noah and he feels comfortable being treated. And we would only be gone a couple of days at the most.... I don't know what to think... we'll have to see what happens.   On a related note---
Some big news - we have received some funding from the Commmunity Cancer Care Team and HawkAir for flights!!!  I don't know if I wrote about this or not, but yes, they are teaming up to provide flights for us for the next while at least.  A HUGE thank you to those of you who have donated Airmiles to us - it has been such a blessing to have your support.  Now you can save them for a cruise or something...

It is now well past my bedtime.  I must bid you adieu (to yieu and yieu and yieu...) and ask you again to continue to lift us up and also to pray for Brittany and her family and the doctors and .... Thank you Lord that you hear our prayers!

Football Friday

Hi everyone, sorry about the distinct lack of posting this week - it didn't seem like there was anything worth writing about, it was just a boring week (with no allergic reactions or strange rare diseases) that is.... until today. There weren't any reactions or diseases today either, but it certainly wasn't boring!
We had been hearing all week that the BC Lions were going to be at the hospital today around the same time Noah had his clinic appointment, so we were pretty excited. Actually I was more excited about it than Noah was because -yep, you guessed it- he is cheering for Winnipeg.  ( I know - he is such a brat!!!) I thought it would be pretty cool to meet some of the Lions, so I was disappointed when a friend from RMH who had seen them told me that they were just some guys, no one special, like Travis Lulay or anything. We were getting ready to go when a woman pops her head into Noah's room and asked if we wanted to meet some football players. I said sure, so these two huge guys come into the room and introduce themselves and ask Noah if he is an Eskimo fan, because he had his Oilers hat on.  He said no and the one guy, Jerome Messam, says, that is too bad, he plays for Edmonton, and signs a card for Noah. THEN, Anthony Calvillo (!!) walks into the room! 

I recognized him immediately and said, "OH! Wow!  Hi!  Can I take a picture of you?" I was so starstruck; if there is any CFL player I would want to meet, it would be Anthony Calvillo! He teased me because I forgot to take the lens cap off my camera... duh! He gave Noah a little football and they all signed it. 

The third guy was Josh Bourke, who also plays for the Alouettes.  Turns out these guys all won awards at the CFL awards last night and then decided to come and tour Children's!  It was so cool.  I totally did not expect that it would be players from other teams.  They teased Noah, and tried to get him to say his favorite team was Montreal; it was cute -he didn't really want to, but he didn't want to be rude, either.  
Then when we left the clinic and headed out of the hospital, we met them again and Noah asked Jerome Messam if he could sign the football again because his pen had been pretty dry and you almost couldn't even tell he had signed it at all. Anthony Calvillo came up to us and said," So you're done for today? Hey, who is your favorite team?" Noah thought for a while and then said, "Ummmm, Alouettes?"  I was impressed that he remembered that Montreal's team is the Alouettes! Then he offered to buy us all coffee (!) I said no, thanks, our ride was waiting for us.  Then he went and stood in the lineup at the Second Cup.  And no one said a word to him.  Or even looked at him.  I wanted to tell all thep eople sitting there that Anthony Calvillo was *right there*! I thought, wow, we must be in Canada, where a professional football player can just go stand in line at a coffee shop and no one notices.... I wonder if he likes that....

Anyway, we also got to go to the Vanier Cup game tonight!  The Vanier Cup is won by the best Canadian University team.  The two teams in it this year were the Mc Master Marauders and the Universite Laval Rouge et Or.  Noah decided as soon as he heard the McMaster team name that he would be cheering for them.  (He also thought the uniforms were the same colour as the Winnipeg BlueBombers, but he was mistaken - the Marauders wear burgundy, not Navy Blue.  My poor colur-blind boy, too bad, lol) 
He got bored by the third quarter and wanted to leave but I wanted to stay so I convinced him and we are so glad we stayed; it was so exciting!  I was surprised how much I know about football - I even knew and could explain to him the format of the overtime!  It was a lot of fun and after  blowing a  23-0 lead and going into double overtime, the marauders managed to pull it off.  It was so much fun!

I always know that I have waited too long to post when I start getting emails and messages on Facebook asking how the week has gone -  oops... Sorry.  He has been doing great!  Everyone comments on how good he looks or much better he looks than the last time they saw him!  The week has been just fine. Noah is just finishing up the chemo he missed when he was sick, so we are only supposed to be here for one more week of Erwinia injections and one more Vincristine, then a week break, then back here for December 13 or so.  There has been some talk about whether or not Noah can have his next round done in Smithers at the hospital, but it seems that after much discussion, the consensus is no.  I think they are scared of him.  I think I would be too; you never know what is going to happen with him, lol!
The next round is similar to what he did in the summer, where he had to be admitted for a few days out of every 14, except he doesn't have to be admitted and it is once every 10 days.  It is the same chemo, just a lower dose, and this time it is in combination with Vincristine.  He shouldn't react strangely, he never has, but I guess they in Smithers would rather not take the chance. I can appreciate that.  So it looks as though we will be here for Christmas.  It could be a lot of fun, so we are just looking at it as an adventure, a different kind of Christmas than we are used to, but it will still be good.  We will be together, which is all that matters! 
Well, I am beginning to lose focus - my eyes keep closing, so I suppose I should go to bed now. 
Thank you for reading and praying for us and what ever else you are doing - we appreciate how much everyone cares for us and takes such good care of us.... Thank you Lord for the friends and family you have given us and how you show your love through them.  Please bless them and keep them close to you.  Amen.

Goin' Home!

Wahoo!  We are going home tomorrow!!! Noah's Doctor decided that his liver needed some time to recover before they slam it with more chemo, so he is sending us home.  At first, the oncologist who works on this ward said it would probably be only for the weekend, and we would have to be back here on Monday morning, but Dr. Davis said it would be better if it were Friday. Then he said if we wanted, it could be Monday (!!!), so I jumped at it, and asked for Monday, Nov 21.  I really wanted to be home for that weekend because that Saturday, the 19th is Alyson's birthday, and the 21st is mine, so we can have a birthday celebration before we have to come back here for Chemo.  Noah and I are both so excited!
I am so happy that he is well enough to go home; honestly, a week ago, there were still so many concerns, I can't believe how quickly things have turned around! He looks so good - his belly isn't quite back down to the skinny body I am used to seeing, but it will go. 
The main thing, as I said before, is nutrition.  The nutritionist wants him to drink four Boost Plus Calories a day.  That is 1420 calories, which is more than he has ever consumed in one day in his life!  He is up to 3, which is 1065, and if he can eat some snacks, it is good.  He ate a bowl of cereal with milk and a banana this morning, so that was pretty good - he hasn't eaten a meal for a while, so we were pleased.  We will have to get into the habit of a boost at each meal and then at bedtime.  Hopefully it won't be too filling - we'll have to see. 
He spent the entire afternoon playing video games and watching tv.  I know, right, but in my defense, he did 7 pages of math this morning.... and 5 yesterday.... I still feel bad. 
I had to go and check out of RMH this afternoon, which takes a bit of doing, and then pack up all of our things and bring them back the hospital. Except I forgot some stuff and I have to go back again tomorrow. Rats. Oh well.  While I was there, the nurse tried to get him to get up and go outside, but he wasn't interested - today was the first day I had let him play so long, and he wasn't gonna waste it!  

Well, hopefully by this time tomorrow the plane will have landed in Smithers (Please Lord, let the plane land in Smithers, I heard they are expecting freezing rain... please let us land tomorrow...) and we will be snuggled up on the couch with our family..... sigh...

good news (with strings attached...)

Today's good news came with a condition: we may be able to go home on Thursday (!!)  IF Noah starts to get some more nutrition into him.  The Doctor said they are considering an NG tube, but Noah doesn't want one.  I would be ok with it, and Tom says go for it, but Noah is strongly opposed.  So we had a talk, and he has promised to drink at least 2 bottles of Boost Plus Calories per day, and try to eat a little.  That should get him close to 800-900 claories a day, which is a big step up for him. He is now down to 31.9 kg which is below the weight at which he was admitted, but he still has about 2 L of fluid, or 2 Kg to go.  This means he has lost 2kg of his own body weight that he has to build up again.  They would like him to start now.  The trouble is Noah doesn't want to eat, and although his fluids are no longer restricted (YAY!!!!) that doesn't mean he can go overboard and drink like crazy.  He is still quite thirsty, and I am still insisting he drink a lot of Boost, but I really wish he would just eat, then he could drink all the juice he wants...

The other concern now is what to do about his chemo.  He will be three weeks behind in his treatment, and they would like to get going on that ASAP.  But his liver is still not quite up to snuff, I don't think.  His own Doctor has been away, but he came back today.  All the Oncology docs get together on Monday afternoons and talk about all the most concerning cases and apparently, in the meeting Dr. Davis didn't quite know what to do exactly and decided to sleep on it.  He will come and talk to us about it sometime tomorrow.  He may say come back after the weekend to start the chemo he missed, or he may say we can stay a week to have a break and just start at the next phase.  We will see.  I am pretty sure that because Noah is behind we will be spending a shorter time at home this time to make up for it.  Sigh. 

We (Tom and I) are getting tired of this being apart stuff.  It feels in some ways like the past eight months have flown by, but in some respects, it seems so long. It is getting harder and harder to leave home to come back here.  It almost seems cruel to only let us go back for the weekend! Or not really worth it, maybe we should just stay and get this long time over with...  I don't know. 

All I do know is that whatever happens we can trust that it is in God's plan and it will be the best thing in the end.  We don't have the whole picture in front of us, but He does. This situation has touched someone in a way that will change them forever.  Maybe it will be one of us, maybe it is a nurse or a doctor, maybe it is one of you reading.  I just know that this all happened for a reason, and God will use even the bad things that happen for good.   So please pray for us that "the God of steadfastness and endurance would give [us] a Spirit of unity amongst ourselves..." This is from our wedding text ( Romans 15: 5) and I have often thought about that blessing over our marriage, how Tom and I generally stand united in all things.    Well, we are still united, but it is getting harder to stand for so long.  Please pray for the endurance that only God can give so that we can make it to March, until maintenance, when we can get back to some semblance of normal....

I still can't get over how everything "worked out" the last two weeks, with my Mother in Law, who just "happened" to be visiting Smithers, so she could watch the girls when Tom came to Vancouver, and then could pack them up and fly here and back with them.  It was / is so cool, you can't say it was a coincidence.  He really takes care of every detail...

Thanks Lord.  And thanks to you too.

Wowee Wow Wow!

They said Noah would get better.  And they were right!  Wahoo! Thank you Lord!
After the worst sleep ever, we have had a really good day.  Noah has been quite ill with the c. Difficile the last couple of days, but last night was so bad the only hour we didn't see was 6.  So. Brutal.  I actually can't believe we are still awake. It is amazing what an exciting hockey game can do to wake you up, lol!
Today Noah was feeling pretty good, his oxygen saturation was so high, the nurse kept turning it down until finally at around 2 this afternoon she turned it right off!  He is still off - crazy how quickly that happened!  Two days ago, they were quite concerned, and now he is free, and breathing easy. (well, easi-ER, anyway!) His sats are still kinda low, 92-93, and he may need a bit of O2 tonight while he sleeps, but this is a HUGE step forward. 
He is actually not hooked up to anything right now.  No IVan, no oxygen, nothing.  They have transitioned him to all oral meds.  They had stopped the defibrotide yesterday, thinking he was good, but then he had an ultrasound yesterday to check out what the fluid in his lungs looked like and while he was there, they checked out his liver too, and they found that there were a couple of places that were still full of clots.  They started the defibrotide again last night, but then they stopped it again this afternoon.  I guess they decided that that little bit extra did the job.  (or maybe it is just too expensive...? I've heard speculation that it costs as much as $12000 /dose.  It definitely costs thousands of dollars per dose.  Crazy, eh?  He has had it every six hours since last week Wednesday; I am astounded by the amount of money being spent on Noah... We are so thankful for this drug. It saved our son's life.  And we are thankful to be living in Canada!)
Today he did some walking around, he had a bath, he played some video games, and he ate an apple. He hasn't really eaten anything; his nutrition has mostly come from Boost- I keep encouraging him to actually eat some food, then he can drink whatever he likes- but he just doesn't want to eat anything.  This four hour period, from 8-12 pm, he is allowed 200ml, so I insist that half of what he drinks is Boost, so he can start to get his strength back.
So, the tentative plan is this: once he has spent two nights without oxygen, he will be discharged to RMH, and he will have to go to the clinic for check ups for the rest of the week and then POSSIBLY we can go home on Friday. I can't believe how quickly he has turned around....
Let everything that has breath Praise the Lord!

Baby steps (around the hospital!!)

Noah continues to improve, liver-wise, then get worse other-wise.  It is kind of frustrating.  We got the news that the cultures they did a few days ago came back postive for c. Difficile.  Again.  Crazy - this is the third time since August that he has had this!  So now he is back in isolation- everyone is all gowned and masked whenever they come in here, so as not to infect the other kids on the ward.  Hopefully the nurses and doctors have already been washing their hands the last few days; I wouldn't want any of the other kids to get it, although Noah isn't suffering too badly compared to the last couple of times he had c. Diff. 
His temperature was fine during the day, but then he spiked again at bed time.  Hopefully the gravol and morphine he just got will help him to sleep well for a while.  Right now his heart rate is the lowest I have seen since we arrived - it is 114 beats per minute. It is supposed to be 60-100 and it was at 130-150 most of this week and last.  It started going down yesterday and today it has been in the range of 120-130, so that is better.  It will be so good when he doesn't have to work so hard...
His weight is down to 33.6 kg, so he has just a little over 2 kg of fluid left in there, which, if my math is correct, is about 2 Litres. I am going to assume, however that he will have lost quite a bit of his own weight and that there is probably more fluid than that, and that his own weight, sans fluide, will be quite a bit less than the 31.5 kg he was on the Friday before this all started.  I am going to guess he will bottom out at about 28kg.  He is so thin.... 
They have had to change things up a bit because his Peripheral IV wasn't in properly anymore so they had to take it out.  The nurse tried to give him Gravol after he was sick this morning but it was just leaking under his skin and stinging quite a bit, so she stopped it and just took the IV out.  Now since he only has his VAD, it will take a bit of figuring to make sure he can get all his meds and transfusions. Some things, like Defibrotide can't be given at the same time as anything else, so for example, the continuous Ondansetron has to be stopped when he is getting it, but Defibrotide takes two hours to run through, so they have to give him gravol or something else so he doesn't get sick while getting the defibrotide.  And red blood cells take 4 hours, so if he needs hemoglobin tomorrow, it will be a challenge to make sure he doesn't miss any of his other meds. It was easier when he had two IVs, because they could just run things that aren't compatible in different lines.  If two drugs aren't compatible, they basically turn to cement in the line, and probably in the person, too, so it is best to have two IVs, if a person is getting a lot of different meds.  If Noah ends up needing transfusions tomorrow, they will likely put in another IV, so he can have his blood and his defibrotide and not miss a dose. 

The best thing that happened today is that Noah got out of bed and walked down to Melanie's room on the next ward and back!  He pushed a wheelchair, so that if he needed a break he could sit down right where he was, and I pulled the IV and the oxygen tank.  He did great! He needed to rest part of the way there, and once we got there, but he made it all the way back without needing a break. He walked a loop around 3B once before bed, too. The doctors and the physio have been telling us that he needs to be upright as much as possible so that the fluid can be pulled down by gravity, and that one of the best ways to get rid of "pleural effusion", or fluid in the lungs, is to get up and walk.  So he did. He is determined to go home ASAP, which could be next Friday.  We will see.  Hopefully he doesn't get too stiff from walking so he can do it a few times a day.  Though now that he is in isolation, he may be limited to where he can go, if at all.  Hmmm, another question for the docs. I'll have to add it to my list.....

We had a nice visit with Klaas Kort and Glenn Bandstra today and they brought us some wonderful cards made by individual students as well as a HUGE card from the gr, 10 class - it is awesome, thank you, it is hanging up on the wall (illegally with tape) - and from the gr 1 class. A lot of the grade ones wrote some pretty hilarious made up jokes, like, "why did the baby cross the road? To get to his mom!" (of course...!) And, "what did the cow say to the pig who was eating? You are eating like a pig!"  Hee hee! They are so cute! Thank you Christa and Jonathan for the cards and also Makayla and Anneka.  I also received a wonderful gift of Starbucks cards from the staff, which is delightful, thank you very much!  I absolutely love Tazo tea, so now I can drink it to my heart's content! 
I think I slept fairly well last night, but I went to sleep too late.  Things seem to be heading on that same trajectory tonight, so I should really head to bed, or I will be getting sick too.  Again, thank you for your prayers, please continue to pray that the fluid leaves Noah's lungs and also that the c. Diff clears up quickly.
Sleep well!

A little bit better, a little bit worse

Noah's condition has not really changed today, he looks a lot better than he did a few days ago, but there is something going on.  I can't put my finger on it, but he just isn't himself.  He was kinda grumpy today, and that isn't like him.  He said he was more uncomfortable than usual, even though he had morphine, and he felt hot.  Now, the hot thing could be due to the fact that he had a bath today and now he is wearing flannel pjs, but it seems like more than that. 
He just had another chest X-ray (they brought the machine up to his room - cool, eh?) and it shows that while not significantly worse, he does have more fluid in his lungs than he did on Monday. AND, the nurse just took his temperature this very second, and he has a fever.  I knew it!
So, yeah, overall, he is better- his weight is down to 34.4 kg, his belly is down another 0.5 cm, so that is good, but if you were to look at his belly, the place where they measure is no longer the largest place on him.  He almost has a "froggy" look to him; his waist is small, and his abdomen is biggest just at the bottom of his ribs.  Where his liver is. And where the bottom of his lungs are.  For some reason, the fluid is not moving down from there.  The physio and the kidney doctor both said today that they would like him to sit up straighter more often, and to sit at the edge of his bed for longer periods of time, which will encourage the fluid to move down.  The way he mostly sits is with the head of his bed elevated to about 45-60 degrees, which apparently allows the fluid to pool in the bottom of the back of his lungs.  He is back up to 4 litres again, and still hanging around 92-93%  If they have to go up to 5 L, he will have to have a mask, which he hates even more than the prongs.  : (  
I took some photos of him today and I am shocked by how he looks malnourished.  His eyes are sunken in, his arms are very thin and his belly big. I won't post the photo for his own privacy, but I will say it makes me sad.  I am starting to feel impatient- now that he is starting to get better, I want him to be getting better faster. Please pray for patience for me and for continued healing for Noah, especially now with this new infection or whatever is causing his fever. And please pray that the fluid would start to  leave his lungs.  If he could get off the oxygen, he would be so much happier, and feel so much better....

"The corner" has been turned....!

YAY!! The Oncologist was just here and she said Noah has definitely "turned the corner", he is in recovery mode now. I am so happy, I can't even tell you! And -  Noah is peeing!!!!  He peed 550 mL last night at 1:30, then 200 more at 5, then again at 8!  He is being allowed to drink 500 mL this morning, so he is very happy.  Thank you Lord!  His weight is now down to 35.9 kg, and his girth is down a bit too, to 75.5 cm.  I am impatient for those numbers to start going faster, but the doctor said yesterday that it will take a good two weeks for his belly to go down.  This is worrying, because he is still on so much oxygen, and actually right now he is hovering around the 90-92% mark, meaning they may decide to put him up to 5L at some point today.  They are measuring around his belly button and that part is going down, but it seems like the fluid is sitting higher up, around his ribs.  You would think that gravity would push it down, like it was before, when he had a big pot belly. His biggest problem is now all the fluid in his lungs.  
He is actually doing so well, Tom and I felt comfortable enough to go out for lunch and leave him alone. (well, in the care of his nurse...)

He has some exercising to do, too. He has lost a lot of his muscle while lying in bed here, so the physio was here and brought an exercise program for him to do with a resistance band. 

Halloween here was ok.  In the afternoon all the kids who were in the hospital who could get out of bed (and who wanted to participate) dressed up and paraded around all of the wards. It was pretty cool.  Noah wanted to see so we got him out of bed and put his costume on and pushed him in a wheelchair out in the hall to watch.  There were some really good Storm Troopers and an Awesome Darth Vader, so we got a picture with them.  They were also handing out candy and some other things for kids who aren't eating, so he got a cool waterbottle and some books as well as the candy. 

That completely wiped him out, so we got him back in bed and he fell asleep almost right away! 

He was sad, though, because Tom decided to go home last night.  Noah and I were both hoping he would decide to stay- even for one or two more days- but he felt that since Noah was doing so much better, he could safely go home.  That is true, but we have no idea when we will be able to go home and we both really missed him....and are already missing him.... sigh. 

We had quite a few visitors yesterday; we had a great visit with my cousin Meagan and her boyfriend Darren last night, Thanks for coming, guys, it was awesome to see you!

We also saw our friend Melanie and her baby who were medi-vaced down here yesterday.  Her baby, Kalum had surgery and is doing really well, thankfully.  We will all be here for the same amount of time- about 7- 10 days, so we will see a lot of each other, I'm sure.  They are in the next ward over. 

The scariest visitor we had though, was Noah's friend Aidan, they are the same age, they were diagnosed within days of each other and until this month have had exactly the same protocol at the same time, so we see quite a bit of each other.  He and his mom, Tina have been coming in to visit Noah, and Aidan had a fabulous costume he wanted to show Noah, so they came last night. 





Aidan dressed up as Darth Maul, from Star Wars. He lost his hair, too, so it was easier to paint his head and glue on the horns.  Pretty cool, eh?  Noah found his mask at a Halloween store in Richmond, he also had a plaid shirt and suspenders.  He wasn't quite sure what to call himself, someone at RMH said he looked like a New York City Cabbie.  I think the mask looks like Mario (without the cigar) Anyway, he looked pretty awesome too.

Well, this morning Noah is allowed to drink 500mL and I want him to try and drink an entire Boost, so I better get on that....  Have a great day, hope your kids are not suffering from a sugar crash, and THANK YOU for your prayers and your support.  We love reading all of your comments! 



and a little bit better...

I was so pleased this morning to walk into Noah's room after church to see him sitting up and talking with Tom.  He looked so good! Well, to be honest, he still looks really bad, but he was so alert, he looked good!  He ended up being awake most of the day and evening, which is a huge improvement, just by itself, but again, his weight was down 300g, and his liver enzymes were down again too, so it really looks like things are beginning to turn around.  He still isn't peeing as much as they would like, but they continue to assure us, it will come.  You can hear that his voice is weak, it sounds kind of nasal; I'm not sure if it is the oxygen or his lungs having fluid in them, or what, but his voice sounds funny.  But, at least he is talking!

The biggest thing is that he just looks more comfortable. He is able to lean back in his bed and still breathe, and he is able to sit forward in his bed, like cross-legged for a little while and still breathe.  His breathing isn't so laboured anymore, and tonight before I left, the nurse had him down to 3 litres of oxygen from 4, so they are starting to try and wean him off the o2 these next few days.
I have to tell myself not to get too excited, he is starting to turn the corner, but he isn't all the way around it yet!  And it will take a while before they will be ready to let him go to RMH, let alone home.  A nurse told me yesterday that I shouldn't be surprised if we are still in hospital after 10 days.  From yesterday.  Well, as long as he continues to improve, I don't really care where we are.

I suppose the best part of the day was when I was leaving I leaned down to kiss his head and he hugged me!  It was great! Until tonight, he didn't have the energy to lift his arms up, but tonight I got a hug.  : )
The worst part of the day was saying goodbye to my girls.  Alyson asked me when I would be coming home and I had to say, "I don't know."  Ugh.  I don't like that.  I feel bad for them, and I want to be with them, I should be with them.  But they are really amazing and so resilient.  They have realized that this is our new life, and we just have to do this for a while, then it will be back to normal again.  I think this is in large part due to our community in Smithers, all of you have really stood in the gap for me and loved them and taken such good care of them (and Tom).  Thank you. Once again, we couldn't do all of this without your support.

Tomorrow is Halloween, and Noah has been talking about trick or treating in this neighbourhood for months! He has a great costume, and he couldn't wait to see how people in Shaughnessy decorate their houses, and what kinds of things do they give out in a neighbourhood where all the houses are worth 3-6 million dollars??? Anyway, we decided not to mention it, but today he figured it out. He was quite disappointed, but I told him I would bring his costume to the hospital (he has this great mask attached to a baseball cap - it is a man with big bushy eyebrows and a big bushy mustache with a stub of a cigar sticking out of his mouth. It is just the top half of his face, but it awesome!)  and there is a halloween parade in the afternoon, so he could either take part in it (depending on the oxygen thing) or watch it from his room.  I'm sure there will be an overabundance of candy as well, though he isn't particularly interested in eating it, just collecting it! Hopefully the activities will be enjoyable, and he can freak out a few nurses with his mask.  He has worn it around here and out and about,and he got  a good reaction, so hopefully he will enjoy tomorrow.
Well, now that it IS tomorrow, I should get to bed.  Thank you for continuing to pray for Noah, the Lord has certainly heard our cries and answered!  Thank you.

A "smidge" better

Noah is doing a little better. A very little, but that is ok.  This morning when they measured his belly he was down 2 cm, and he weighed 300g less than yesterday.  That is what we have been waiting for - a sign that things are starting to move in the other direction. His belly is still 76 cm, or 30 inches.  His weight is still 83 pounds, up from 68 on Sunday.  But his liver enzymes are WAY down; for example, there is one that is supposed to be 10-60 and it was over 2400 - now it is down to 740.  That means that his liver is starting to work again, albeit very little.  The pee, however, is not yet flowing in abundance.  But it is coming. They keep telling me it will come.
Today was a very nice day, we had some visitors: Trevor Vanderveen (my 2nd cousin and a pastor of the church we normally attend in Vancouver, and also former Smithereens, Dan and Irene Schat.  It was very nice to see all of them, and to pray together.
He did have a bit of an "incident" later on this afternoon: he got up to pee and then started saying how much his liver hurt, so he got back onto his bed. Meanwhile, the SAT monitor (measures the percentage of oxygen in his blood, or oxygen saturation) started beeping like crazy and his sats went down to 83%, which really isn't all that low, but for some reason, it just wouldn't go back up to where it should be, 92 % or higher.  He also wouldn't move over and sit properly and he was in pain, so he was kind of hyperventilating, and crying, so the nurse had to take the nasal prongs out and use a mask and she also turned his oxygen up to 10 litres before it brought his sats up.  We didn't realize at that point that it was related to pain, so we got pretty freaked out!  She gave him some morphine, and then went to get the Dr, who came very quickly to check him all out.  She ordered a chest X-ray and that the morphine be given every three hours, instead of as needed.  He kept the mask on and managed to get down to 5 litres, but that was up from 3 liters, where he has been for a couple of days.  I became quite worried that this was a setback, but the nurse assured me that it was more of a sidestep than a setback.  We figured out that yes, it was pain related, that as soon as he was comfortable, the o2 went down.
The radiologist brought the X-ray machine right up to Noah's room, which was cool, we didn't have to get the entourage back together, Noah just had to sit up straight in bed.  The results showed a bit more fluid in the left lung.  Rats. The Dr. said that really, he was doing fine, this is just a little blip on his screen, he would get off the mask and tomorrow we would wean him off of some of the o2, back down to 2 litres or less.
This caused a bit of a quandary for us, though, because up until that point, Noah had been doing ok, and was so stable, when RMH called yesterday and asked us if we wanted Box Seats to the football game tonight, we initially said yes.  Tom's mom is here, and she said she was willing to sit with Noah while the rest of the family went to the game.  Now, after this,
A. we didn't want to leave him at all  and
B. Mom didn't really feel comfortable staying with him
But the house had kind of put pressure on us to go (the owner of the box was going to be there, so they wanted the box full, so as not to offend him) and the girls really needed to get out of the hospital and do something fun. Noah wanted one of us to stay, so we decided that one would go with the girls and one of us would stay. Tom had more reservations about leaving Noah than I did - I don't think he really trusted their assessment of the situation- but in the end, Noah convinced him that he should go because he doesn't get to do all the fun stuff like I do.  He agreed, but really only for the girls.  Anyway, in the end it was fun, the girls had a blast and Noah was fine.  Alyson was hoarse from cheering so loudly; apparently she loves football.  Who knew?
While they were gone, the mask drove Noah crazy, so he decided to go back to the prongs, which went fine.  He went down to 4 liters and his sats were 95-97 when I left.  He was awake and negotiating what he could spend his remaining 90mL drinking, orange juice or root beer.  unfortunately, he needed platelets today, so that ate up a lot of his fluids, and later tonight he will have more red blood cells, which will further reduce the amount he can drink by 500 mL.  Man, once those transfusions stop, he will be laughing! He will be able to drink so much, he will be floating!
So we thank God for little things, and big things today, and continue to ask him for Noah's complete recovery.  Thank you for joining us in prayer for our sweet boy.

"Very Sick, but Stable"

That is apparently what they have been saying about Noah.  However, he continues to gain fluid and his breathing continues to become more and more labored. He had a chest x ray this morning and we had to go down there with his mega double IV pole, an oxygen tank, the Sat monitor and Noah in a wheelchair, with all his tubes and lines, looking very pale and bald and sick.  It was a crazy caravan with the porter pushing the wheelchair, the nurse with the oxygen tank, I had the Sat monitor and Tom went ahead, opening doors and pushing buttons.  As we entered Radiology through the side door, all heads turned toward us in amazement.  The room was completely silent as we made our way to the room where we waited for the x ray.  I turned to Tom and said," well, we just made all those parents feel a whole lot better..." 
It is totally true. I remember seeing kids with rigs like that and thinking to myself, " Wow, I am so glad my kid just has Leukemia!"  I never thought in a million years that I would be a parent of one of "those kids" But here we are. 
And at least we are together.  Tom arrived this morning, and tomorrow the girls and Tom's mom are flying from Smithers.  It will be so nice to see them. Tom pulled out the proofs for the girls' school pictures and I just started crying - they are so beautiful and I miss them so much.  I can't wait to hug them.....
So thank you to those who arranged for all of that, and took care of all the details (!) the girls are super excited to see Noah, though I don't think they really understand how sick he actually is.  But they are amazing, compassionate girls and they will hopefully be able to sense our peace in this situation.
We have heard from everyone we talk to that it will get better. It will probably get worse before it gets better, but he will be just fine.  I am clinging to that. I don't think Doctors say that kind of thing lightly, especially in a situation like this, so I feel very hopeful.  It is going to be a while, though, and there will be setbacks as well, I'm sure.
Noah had a pretty good day. At the beginning of the day he was on 3L of oxygen, but for the x-ray he had to stand up straight (it was very difficult for him to stand up at all, let alone straight) and take a deep breath.  It was hard for him to do that.  The next one was from the side and I put on an apron and stood in front of him and held his arms up in the air and he took another deep breath- this time it was easier, and by the time we got back to the room he was breathing much better, and he only needed to be on 2L for most of the day.  He is currently on 3L, but will likely be bumped up to at least 4 during the night.  Unless the defibrotide starts really working and he has to pee a lot.  (I'm praying for three times)
Deep breathing is very good for lungs, it reminds them how much they can actually hold, and then they stop doing all these little shallow breaths.  The physio came and gave us this breathing "game" for Noah to try; there is a visual incentive for him keep breathing through a tube and keep a little duck in the right place. It is hard to describe, and it is hard to do, I hope he will try it more wholeheartedly tomorrow.

He was very upset this afternoon and evening because the Kidney Docs have decided that he should be taking in considerably less than what he pees out. They came up with a formula: he can drink the same amount he pees out  minus 100 mL, unless he gets a transfusion, which adds to the amount you would subtract.  For example, this afternoon he peed out 180 mL and 200 mL in a four hour period, which meant that he could drink 280mL (180 +200= 380 - 100= 280), except that he got a blood transfusion which constitutes 250mL, so really he could only drink 30 mL, or 2 tbsp.  He cried, and I don't blame him at all. He is super thirsty, but the doctors have decided that his fluid balance needs to be -500mL by the morning, which means he needs to pee out 500mL more than he drinks, which is a LOT! He did pretty well this evening, because he had platelets, so they gave him Benedryl, and he just slept all evening.  I think it is best if he sleeps, because he can't think about how thirsty he is if he is asleep, right?
Well, we had quite a bad night last night - he just couldn't get comfortable and finally i asked the nurse for some Morphine for him and that helped so much, they decided to just give it to him every 4 hours to keep him comfortable. Oh and he has a new eggcrate foam topper for his bed now, too and a different set up for his pillows, thanks to the OT who came today.
I am having a hard time keeping my eyes focused, so I think I should probably stop typing and go to bed.  Thank you for praying for our sweet boy, we appreciate how everyone has supported us and him during this time.
My sister Julie posted this on her facebook :


Julie Holt
is rallying the troops....our nephew Noah NEEDS to start getting rid of the extra fluid...join us in prayer that his body will start cooperating...pray for pee!!!!   

I think that is so funny.  Pray for Pee - our new rallying cry...

Pray for Pee!

Pray for Pee!

Pray for Pee!

No Change...yet

Today has been largely the same as yesterday. Noah still has a very large belly, he is still gaining "weight" and girth, but the rate of gain has slowed from the last few days.  Probably this is due to the fact that his fluids have been restricted, even the infusions of drugs are now in the minimum amount of fluids possible.  He is anemic, but they are even holding off on giving him blood because they don't want to give him any more fluids.  He is only allowed to drink the amount he pees.  Otherwise his fluid balance would be out of whack. Right now he is on the negative side, which is good.  I suppose it helps that he basically slept all day - he can't drink if he is asleep! Thankfully, he is peeing out more than he has taken in.  That said, he is still not peeing as much as they want him to. The diuretics are making him thirsty, which isn't really that good, because that means his kidneys are looking elsewhere for fluids, not the fluids he already has inside his body. I hope that all made sense. I am feeling a bit foggy at the moment.
I think it is time for bed, although there isn't much chance I'll be able to sleep; he is getting a platelet transfusion right now to keep his platelets up high enough for the defibratide.  When they are done, the IV will beep, then the nurse will come in and start a flush, then that will beep, then she will start the Lasiks, then that will beep, then about an hour after that is done, we have to wake him up to pee.  Then every two hours after that she will come in to check his vitals.  Sometimes the IV beeps for other reasons, like air in the line, or an infusion is empty, etc.  And then at 4am she does blood work as well.  It is seriously hard to sleep in this place. 
The Doctors ( I saw 11 different doctors from Oncology, Nephrology, ICU and Gastroenterology today) all basically told me the same thing about the fluids, except the Gastroenterologist, who told me Noah should not be drinking water, that is just a waste, since he hasn't been eating, he should be drinking Boost or Ensure instead. DUH! Don't know why I didn't think of that...
He also now has a peripheral IV in his arm, in addition to his VAD, so he can be hooked up to two IV pumps with a LOT of lines. It is pretty crazy. At all times, he is hooked up to a SAT monitor, which monitors how much oxygen is in his blood, oxygen (right now he is only on 0.5 liters, which isn't very much, but it is not good that he is on it at all), and two IV lines, and then every two hours they come in and check his temperature and blood pressure. tomorrow I will take a photo of  IVan the second and put it up here.  It is intimidating. 
We had a nice visit from my cousin Debbie's son, Dayton.  He is going to BCIT and came to bring Noah a gift from my Uncle Tony and Auntie Ann.  It was a box full of Oilers stuff plus some Manitoba Moose foam antlers.  They are so sweet... Noah thought they were pretty cool, though he couldn't quite figure out how to put them on, lol.  It was cute.  Thank you very much uncle Tony and Auntie Ann, it brightened up his day - he even smiled.  Thanks also to Dayton for dropping by; it was nice to see you. 
well, I really need to get to bed.  Please continue to pray that Noah will start peeing. And peeing A LOT! I know, I feel for the guy - he really has no privacy...

I am going to admit that I was starting to get really freaked out this morning and while I was reading all of your lovely comments and encouraging posts here and also on facebook, I cried quite a bit .  I started having a lot of fear, so I just prayed and asked God for comfort and reassurance and peace. I am not kidding, within half an hour I had two different docs come in and tell me that the prognosis is good because of how early I brought him in and because of that drug, Defibratide. It is really amazing how God answers prayer. The Oncologist said that he has had 2 patients with this and they ended up getting through just fine, then continuing their treatments with no lasting efffects. Phew! Praise the Lord!

An official diagnosis... (edited)

Veno-Occlusive Disease.  I don't recommend googling it; it is scary.  It is a disease that is more common in patients who have had a bone marrow transplant; it is a graft vs. host kind of thing.  It is extremely rare in kids who have not had a transplant, but it can be caused by one of the chemotherapy drugs he is taking.  Basically, the small blood vessels in his liver are all clotted up, so it can't do its job of filtering his blood.  As a result, his abdomen is filled with fluid.  He has "gained" about 5kg of fluid since Sunday.  His chest and belly are all swollen and hard.  This fluid is putting a lot of pressure on his lungs and they are starting to get a bit of fluid in them as well, so it is difficult for him to breathe.  He is not able to lie flat, he needs to be almost upright to be able to breathe, but then his oxygen saturation goes down so now he is also on Oxygen. 
VOD also just eats up platelets, I guess in all the clotting, so that is the reason he has now had 6 transfusions since last Tuesday.  With all that Benedryl, he is just wiped out and he can't keep his eyes open for more than a few minutes.  He is trying so hard to watch the hockey game, but he just can't stay awake!
His most annoying issue right now is the fluid- it is causing most of the problems- so they need to get him to pee it out. 
What he is on right now: (I am not sure of the spelling of a couple of them)
Ondansetron - the anti-nausea drug, often given to him orally, because every time he has to stand up, sit up straight, etc, he vomits.  He is now getting this IV; they are hoping to stop this nausea, because he hasn't eaten a thing since Saturday night and they want to insert an NG feeding tube. 
Gravol and Nabilone - two more anti-nausea meds
Piptazo - antibiotics, because he had a fever yesterday
Morphine because his skin hurts from being all stretched out and his tummy is just uncomfortable.
Lasiks and spironolactone - two different diuretics: he needs to pee out all the fluid in his belly right now. 
Ursodiol - a drug used to treat VOD don't know exactly what it does, but it works with the defibratide.
Defibratide - now this is the one that is interesting and where God really showed up- This drug is only made in Italy, it is very expensive and not only do you need special permission from a doctor to prescribe it, our doctor had to spend all day on the phone getting permission from the Government to give it to him.  She got the permission (thank you Lord) and the hospital "happened" to have a secret stash from the last patient to have VOD here! It is very hard to get and sometimes it takes a couple of days to get here, but not today- he is actually getting some right now, and will be getting it every six hours for the next 48!  The nurses are amazed.  I'm not really surprised, jusst really thankful - I know who orchestrated all of that : )

The Defibratide can cause bleeding, so they need to make sure his platelets are always around 50, so they gave him some good platelets today and will probably do it again tomorrow. 

They are also worried because he isn't peeing as much as they would like, so we now have a nephrologist on the team of doctors that comes and goes.  One of them explained that Noah's kidneys can sense that his blood pressure is not quite right and when that happens, they can just kinda go to sleep and quit working and it is hard to wake them up again and then you have a problem of how to get all that fluid out!  The Nephrologist is ok with the drugs he is on now and will check in again tomorrow. 

They also moved us up to 3B, where they can keep a closer eye on him, and we now have our own nurse.  The nurses often have two or three patients, but I guess they decided that Noah warranted his own nurse. Actually today he had two - there was a nurse from the Nursing Resource Team shadowing her so he could learn how to be a nurse in Oncology. 
They (I keep saying "they" because I am not exactly sure who is making all of these decisions, lol) are fairly confident that by the time Tom gets here on Thursday morning, he will have turned the corner.  They are really on top of this and I am very thankful for the care that he is receiving. 

We also had a really nice visit with a friend, Alice Tromp, from Smithers today, thanks for coming Alice!
Please pray that the drugs that are working in his liver do exactly what they are supposed to do, and that his kidneys will be protected.  Even as I write this I am reminded of Julie Monn - Djasngar's comment on yesterday's post (that made me bawl my head off, by the way...), that more detail doesn't matter - God already knows what Noah needs, we just need to trust that he will do what needs to be done. I am thankful that we can see His Hand so clearly in everything that happened today.  Please keep Tom and the girls in your prayers, too; I still think it is much harder to be far away than to be here where the action is!

A bit of an update...

Ok, so this morning, he was getting platelets, and the dr. came in and examined Noah and noticed that his belly seemed a bit swollen, and when she pressed it, it was quite sore.  They sent him for an x ray of his abdomen, and while that was happening, the x ray techs noticed something in his lungs so they took a chest x ray too.  What they noticed is that Noah has pneumonia.  With no symptoms.  That would account for his fever.  Yes'm he now has a fever. 38.7 at last check. 
The other thing they are checking is his liver function and when he peed this morning, his urine was positive for calcium, so they want to check for kidney stones.  He will go for an ultrasound pretty soon.
One hour after his platelets, they checked to see if there was any rise at all, and his count was 22, which is still considered critical, so after they finish the blood transfusion, they will do more platelets.  Hopefully these stay in his system a little longer.
He is quite uncomfortable because of the swelling of his belly so they gave him morphine to help with that, but he doesn't seem to be improving too quickly. 
He will be going on Morphine and antibiotics until this all gets figured out.  It all seems to be random things all happening at the same time.  Odd indeed....
On Facebook, I posted an update just like this and when it showed up on my newsfeed, this post was directly beneath it:

"We live in a broken world full of broken people. But isn’t it comforting to know God isn’t ever broken? He isn’t ever caught off guard,... taken by surprise, or shocked by what happens next. He can take our worst and add His best. We just have to make the choice to stay with Him and keep following Him through it all."

  

Amen.  He sees Noah and he knows exactly what is happening.  Lord, please help the doctors to find it, too.... please heal Noah...

 

 

he is a sicko...

We are currently at the hospital. We came here yesterday at around 10 am because when he threw up in the morning, there was dried blood in it (sorry for the graphic detail, that is one of the things that alerted me to the fact his platelets were low).  He also had some strange bruising on his chest and shoulder, which is another indication.  So we came to emerg, they did bloodwork and when it came back, his platelets were below 5! Now this is very strange, because we just spent all day Friday at the clinic, where he had a platelet and a hemoglobin transfusion.  He didn't have a fever, but he did continue vomiting for a couple of hours.  They brought us up to the ward, where they gave him some benedryl and then the platelets.  When we arrived the doctor took one look at him and said, "I think we'll be keeping you here..."  Rats.  I have to admit, he looked pretty bad; very pale with dark circles under his eyes. 

Thankfully my Uncle Ken and Aunt Helene came in the afternoon, so I could bring the RMH van back there and pick up some clothes, etc.  Uncle Ken stayed with Noah and they watched a movie together. 

During the evening, Noah went to the bathroom and his urine was red, so they tested it, looking for blood, but it tested negative.  He went to sleep at around 9 and fairly shortly after that his temperature started going up - it went up as high as 38.4 at 11:30, which is 0.1 degrees away from a fever (38.5), at whcih point they know there is some sort of infection and immediately put him on antibiotics.  It never did go any higher than that, thankfully, and it is now down to 37.7, which is still high for him, but not technically a fever.

They always do bloodwork at 4am, and when those results came back, his platelets were again below 5!  His hemoglobin is also low-ish  again, so they are thinking about doing another red cell transfusion as well.  He is getting the platelets right now. SO weird!!!

I am not sure if I explained what platelets are, but just in case you don't know, they are basically the part of the blood that forms clots, so if a person has low platelets, his or her blood doesn't clot, and they can bleed to death. Right now Noah can't even brush his teeth, because his gums could bleed and it would be really hard to stop it.  He has all these little spots where the blood is just kinda leaking out of his capillaries and making little tiny bruises.  His urine is still red, and one possible cause of that is that his blood is just leaching into his bladder or kidneys.  Another possiblity is that he is so dehydrated his kidneys are just not working that well.  Not sure what is going on...
He was throwing up again after 5 am so they gave him Gravol, which didn't seem to work until about 6:30 , but then they gave him Benedryl too, so he is REALLY tired!  Poor guy. 

His breakfast just arrived, so I am going to try to get him to eat some of it....  Please pray that they figure out what is happening with him-especially what is going on with his platelets- soon! 

Yeah, we were on TV, no big deal....

I barely slept that night- all these thoughts and answers to the potential questions they had given me were swirling around in my head.  When the alarm rang at 5:30 I could barely get out of bed... but then the nerves took over.  We got ready and jumped in the car at 6:15. We drove from Marine Drive all the way to Burnaby and it only took us 1/2 an hour! I was worried about the traffic, but it wasn't bad at all!
We arrived and the security guard signed us in, gave us our passes, and brought us down to the green room to wait until it was time.  Richard Pass, the CEO of Ronald Mc Donald House met us there and went in with us to the studio.  I wasn't sure if he was going to be on air or not, but he was, and boy, was I ever glad!
The studio is just one big green screen!  I didn't expect that at all.  There was the desk where they sit on one side of the room, then beside that is a big space where the weather person (Wesla Wong) was doing the weather while  we were being seated on the circular red couch across from the desk and having our mics put on, etc.  Between the desk and the couch were two big monitors and three cameras, mounted on tracks on the ceiling and moving on these robotic looking arms.  Attached to the cameras were teleprompters which told Sophie Lui and Steve Darling what to say. I don't know what y'all could see, but behind the couch was just a green wall.
They introduced themselves, asked us a couple of questions and then we got started.  It is a bit of a blur, but what I do remember is that all of the time I spent preparing and rehearsing answers to questions was for naught.  They didn't ask me even one of those questions, lol! The one they did ask was one that Richard had kind of prepared me for in advance but what came out of my mouth was NOT what he wanted me to say ( I felt like a bit of an idiot....) but it was ok, because he jumped in with the right answer, lol.  Like I said, I was really glad he was there! They asked Noah about what he likes to do at RMH and the topic turned to foosball. Both Steve and Sophie told him they were really good at it, but five seconds later, when the camera turned off, Sophie turned to Noah and said, 'I've never played foosball in my life.'  it was funny....
So yeah, it was fun.  We had to go to the hospital later that morning and so many people said, "hey! I saw you on TV this morning!"  It was cool - we felt famous!  The next morning, Noah had an LP and just as he was going under I mentioned something about our hotel and the doctor said, "I thought you were staying at RMH?" and Noah, (who was under the influence) said, "If you had watched us on TV yesterday, you would have known that....!"  It was hilarious. None of them had seen it and were totally surprised.  I am still  laughing about it as I write this... it was so funny...
The doctors and nurses LOVE it when Noah is going under for his LPs.  He is absolutely hilarious.  He says the craziest things.  He often talks about his wish, where his first idea was to ask to go the International Space Station. In space.  He blames me for not being able to do that.  He actually wrote it on the form: I wanted to go to the International Space Station, but my mom said no."  LOL
Anyway, as a thank you for going on TV, the hospital gave us tickets to the Canucks game last night that someone had donated.  It was amazing.  Apparently there is a section of the arena where they have WAITERS.  We had a waiter.  And a menu.  Again, no big deal.   We were in section 104, in row 7.  It was great, we were just up from the face off circle to the left of Luongo.  Noah kept his promise to Dan Hamhuis and cheered for Vancouver.  When Dan took Noah into the dressing room, he made a deal with Noah, that as long as they weren't playing the Oilers, he would cheer for the Canucks.  It was cute.  So, Noah now feels like it might be ok to cheer for Vancouver without compromising his commitment to the Oilers.

Today we are at the hospital.  This week has been a bit of a write-off as far as school work is concerned.  Monday was ok, Tuesday Noah had to come here for blood work at 9:30, where they determined that he needed a platelet transfusion before he could have his  LP on Wednesday.  They took a long time to arrive and because he reacts to platelets, he gets Benedryl beforehand. It is just 35 mg, but before he even got the platelets, he couldn't even focus, so he laid down on the bed and conked out.  He was out until about 4:00!  I finally got so bored, I pretty well carried him out of there.
 It was too bad he was so affected by the Benedryl, because we had a visit from the Willistons, Wren's family.  They were there for a ceremony- complete with a trophy- because Wren is now officially finished her treatment. I absolutely love the idea of a trophy to end off treatment, like it is a race to be won. In Noah's case, it is more like a marathon, but the analogy still works.
On Wednesday, his LP was quick and as soon as he was allowed to sit up, an hour after the procedure, I rushed him out.  I did NOT want to sit here all day again.  Unfortunately, I may have rushed him a little too soon; he was stumbling a little while we walked to the car, lol.  It was funny. To be honest, I felt a little bad...but it was still funny. At least he also saw the humour in it.  He did spend the entire afternoon reading a novel for his next novel study and he finished it, too, so it wasn't a total write-off.
Yesterday (Thursday) we had a great visit from our good friend Aleeda!! She came with us to Noah's appointment, saw how a chemo treatment goes, then we showed her all around the hospital, and RMH.  It was great.  We had a lot of time to visit and drink tea. : ) Then we went to the game after Aleeda left.
This morning, we had to come for chemo and blood work because they thought he might need a red cell transfusion.  Our appointment was at 9:30.  It is now 5pm, and we are still here, and not leaving anytime soon.  Well, probably within the hour, but still... Anyway, they did the bloodwork and his platelets were at 11(!!!!)  20 is the critical level.   He just had platelets on Tuesday!  They dropped like crazy.  I did notice he had a funny mark on his neck, like a bruise, which only happens when his platelets are low, but I thought, he just had some, so he was ok.  Yikes.  He also needed red cells, so first he had benedryl (made him too tired to do anything) then platelets, then red cells.  Platelets take one hour and red cells take three hours.  Another looooong day.  It looks like we are the only ones left in the clinic, too, lol.
Oh, they just came to start the flush, so it looks like we will be outta here soon!  Yay!  We are going to Dan and Sarah Hamhuis' house for dinner and my good friend Elaine will also be there (Double Yay!!)
I hope everyone has a good weekend and for all you Smithereens, enjoy the snow!!!

We're on the news tomorrow!!

Hi everyone, sorry about the long break between posts - I was still having laptop issues, but no more! I brought my laptop in to be fixed and it is literally good as new; Windows has been re-loaded and all the settings are back to factory settings.  I did lose a few photos, but I think we are generally ok.

Yes, about the news... Noah and I have been asked by Ronald Mc Donald House to do a TV interview regarding the new House on Global TV. Live. Tomorrow morning.  I'm terrified. Absolutely terrified.  First of all, I feel a bit like Moses, except that I am rather "quick of speech", as opposed to "slow of speech", lol.  It happens especially when I am nervous.  So, if you find yourself praying, please pray that God will give me words to say and that those words will be intelligible.  I thank you in advance.  Second of all, I don't have anything I want to wear on TV.  I am not prepared for this.  I admit I did spend a long time in Winners this evening, but I only came out with a pair of pants.  Which probably no one will see, but oh well.  I know about them and they make me feel more confident.  Isn't it odd how pants can make you feel more (or less) confident?
In all seriousness, though, I really want to do a good job; there is one more hurdle to jump, so to speak, in the planning of the new House and that is the rezoning of the land on the hospital grounds where the new RMH will be built.  The Vancouver City Council will vote tomorrow night, so RMH and the BC Children's Hospital Foundation want to raise awareness beforehand.  Another Mom, Susan,  from the House has been asked to speak at that meeting.
We will be on Global at 7:20 am.  You can join Tom in laughing at me.  In fact he has already started.  I just talked to him, and he was laughing at me. : (  It's ok, I think I would probably do the same if he were going on TV, I'd just be really happy it isn't me.  Except this time it is, lol.
Anyway, the Hospital is going to give me a DVD of the interview, so for all you readers outside of BC, I will post it here as soon as I receive it.  

Noah's treatments are going well, he hasn't had any fevers, nor did he ever get that cold my parents had at Thanksgiving, thanks be to God!  He has blood work and possibly a platelet transfusion tomorrow, then a Lumbar Puncture (spinal tap) on Wednesday morning along with more chemo that day and everyday until Saturday.  Then on Monday we start another two weeks of Erwinia injections: Monday, Wednesday and Friday.  The second Friday which I am pretty sure is Nov 4, we get to come home!

Last week, Dr. Lucy prepared us for the idea of spending Christmas in Vancouver. I was hoping we wouldn't have to, but at least our situation is that Tom has those two weeks off, so we can be together, where ever we are.  And it will be ok.  In fact it might be really nice.  One never can tell.

Well, I have to go to bed.  I just hope I can sleep with all these thoughts swirling around in my head.  I'll let you all know how it goes tomorrow!  Good night!

Counts are good,but we're not going

Noah's counts were just high enough that he could go back for treatment, but because he has c. Diff, and we haven't been home that long, they decided to let us have a few more days. His neutrophils are so good he could even go to school, if he didn't have c. Diff.  (And if there was school.... our school has Teacher's Convention this week and they have Thurs and Fri off as well as Monday.  It is a nice break.) Our nurse told me that when she saw Noah's results, she said, " Oh no! His counts are good!" which she never says in the same sentence, lol!  We are scheduled to go back for a Wednesday morning appointment. 
I am not ready to go back.  In fact, I don't ever want to go back there.  I want to stay home with my family. This really sucks. 
However, I am thankful that they gave us a few extra days. He needs to go back for bloodwork on Friday, and I am hoping that his counts will actually go down again so we can stay a few more days. He is not on a study, so there is more flexibility in that regard; otherwise they have to stick to a strict schedule. I have been happy on more than one occasion that he is not on any study.  It has been easier for us than other kids who are on the study.   
Here at home, I got to go to an assembly led by Alyson's class today, I watched Miranda do a play with her classmates, and brought Noah for a trumpet lesson ( he absolutely LOVES playing the trumpet). It was so nice to just do all the normal mom stuff, it made me sad for my girls who don't have their mom for all those things; but it also made me glad that they have their dad right there all the time.  It is so perfect that he is a teacher at their school.  God really has every detail looked after, doesn't he? 
It is bedtime.  I have a lot of work to do tomorrow.  My mother is here, helping with painting and organizing my house.  It really needed some work, and we were superstars today. Thanks mom!
g'nite all! and Happy Thanksgiving to you if I don't end up writing again before that.  Please join us in thanking God for his faithfulness and love for each one of us. 

C. Difficile again....

Yep, Noah has c. Difficile again.  Rats.  He hasn't been feeling well all weekend, and I was worried he would have to be admitted or go back to Children's but the Dr. says that as long as he takes his anti-biotics and does a lot of handwashing and using hand sanitizer, he is ok to do whatever, so that is a relief. 
He needs to go for bloodwork tomorrow to see if his counts are good enough to go back for treatment on  Friday.  I really hope they are low.  I feel like we just got here, I am not ready to go back yet.... 

Phew! We checked out of RMH this afternoon, ate dinner and rushed to the football game. Noah didn't really want to go. He has been having quite a lot of pain the last couple of days. His hips were sore so it was hard for him to walk, then last night, he couldn't get to sleep because his knees were too sore. He was actually crying because they hurt so much. He doesn't cry very much any more, so I knew it was bad. I called the oncologist on call at Children's and she told me I could give him Morphine, so I did, and after about half an hour he fell asleep, only to wake up four hours later, needing more. When I talked to the docs about it today, they said it was the Dexamethasone, and that we can expect this and worse for the next few days. He is walking "like an old man", at least, according to one of the doctors. Yikes! He had a nap this afternoon, but he was still so tired, he kept saying "it's ok if we don't make it to the game." i felt bad because I actuallly drove a house van full of people, and Noah really wanted to leave after the first half (even though we had the best seats- 35 yard line, 3 rows up from the Lions sideline- they were great!) but we really couldn't. I had been chosen to drive because I knew where to go, no one else did! He brightened up part way through, about the time the Eskimos challenged the ruling on the field on Simon's catch, if you were watching, lol. He was ok til the end, but then we still had to get back to the house, get all of our bags and get to the hotel. We are staying at the Travelodge by the airport because our flight HOME (yes we are going home tomorrow- I am so excited!!!) is at 7:45 am and we couldn't possibly check out of RMH in time. We gave a wake up call in 4.5 hours, so I should really get some sleep ... So, to all of Noah's friends who have been saying, "Noah is so lucky! I wish i had leukemia!" i know some of you have been saying that this week... ; ) you should know that even though it seems like all Noah is doing is having fun and getting to do cool stuff while you guys have to go to school, he hasnt seen his dad or sisters for almost a whole month, he has to endure a lot of pain, a lot of needles (18 this month alone), medicine that makes him sad, people poking and prodding him all the time and CONTINUALLY bugging him to eat, etc. Leukemia really sucks. He would way rather be in school with you guys. He misses you a lot. He mostly only gets to hang out with his mom. How awful is that!?! Poor guy.... it has been a huge blessing that there have been so many fun things to distract him from all that other stuff! Isnt God good? He takes such good care of us. This is another post from my phone, hopefully it isn't as fraught with errors as the last one. I can't really go back and read it over. Tomorrow I will try and add a couple of pics from tonight. Good night all! By the time most if you are reading this, we will be at home, snuggled on the couch with the rest of our family. Sigh, I can't wait....

Rollercoasters...

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

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

                                                                   photo credits: Dan Hamhuis and Ken Vanderveen

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