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!