One More Night

Greetings from BC Children's Hospital! The doctors have decided to keep Noah for one more night. Not too sure why, since they stopped the Ondansetron and aren't giving him any more Gravol, either. I have an idea it is because of his blood pressure - they keep taking it, and it seems to be consistently low, even though they are giving him a LOT of fluids and he had a blood transfusion this afternoon. Hmmm. They haven't said why, exactly, but my powers of deduction tell me that is it. That and tomorrow morning they will do the l'asparaginase here in the room, instead of the clinic. They will start the ondansetron IV before they do it and watch him to see what happens. I REALLY hope it wasn't the l'asparaginase that caused the vomiting; our doctor doesn't think it was, but he was stumped.
Anyway, he is feeling perfectly fine and now, after the transfusion, has lots of energy and is getting quite bored. Good thing it is almost bedtime!
My cousin Debbie came today and brought Noah a present that some of you will find quite funny. A Canucks t-shirt and a collector puck.

She is a rabid Canucks fan and is always teasing Noah. (Who, by the way, has been heard saying that he doesn't mind if the Canucks win... reluctantly, but he is on record as having said it....) I think that if people hadn't started teasing him so much he might have jumped on the bandwagon, seeing as we are here in Vancouver (and he is cheering for ONE Canuck, just not the whole team, lol! He has a Dan Hamhuis poster from the newspaper up in our room at RMH) but the more people bug him the more he digs in his heels. He is so cute, they can't resist it. There is one nurse, Andie, who teases him mercilessly, especially if he happened to forget his Oilers hat that day. He is hoping that at some point he will get to meet some of the Canucks either here or at RMH. We have heard that they do come and visit those places once in a while.
I have to go, Noah wants to annihilate me at a video game before he goes to sleep....

A Very Bad Day

Yep, it has been a bad day - one of the worst so far. It all started when Noah was worried about the l'asparaginase injection he had today. He couldn't sleep last night until after 11, and we had to be at the hospital at 8:15, so he was tired and kinda grumpy. I felt bad enough for him at that point!
AND THEN:
1. They put a numbing cream on both of his legs, about mid-thigh, because (and we were never told this until this morning) they needed to inject the drug into both legs because there was too much for only one syringe. But he was telling himself it was going to be ok; there would be two nurses both doing it at the same time. So at this point he was pretty nervous, but trying not to let it show. When it came time, he started kinda shaking and a little tear fell down his cheek. : ( He has never really trusted the numbing cream; he is always nervous before they poke him and very relieved when it doesn't hurt. It is pretty cute, actually, how he almost slumps in relief, and says, Phew!
2. The nurse took the bandage off of the site where they had put the cream, and wiped it off. I stood by Noah's head, held his hand and leaned over him, kissing his cheek while they did the injections. He cried out because it hurt and then cried for a while (apparently the stuff burns after they inject it....) when I was helping him get his pants on, I noticed a very clear marking where she had taken off the bandage with a blob shape in the centre where the numbing cream had been. And about an inch and a half above that, the bandaid covering the injection site.
SHE MISSED THE CREAM! So now, not only does he not trust the cream, now he won't trust the nurses either. Sigh... I will have to find a way of marking his leg where the cream is before Wednesday, his next injection.
3. He threw up just before 2:00. Now this morning as soon as he woke up, he went and threw up. This sometimes happens and he wasn't too upset about it, and asked me for Ondansetron, the anti- nausea med that lasts 8 hrs. I gave it to him at 7:20 this morning, so it should have lasted until 3:20. Right? Well, at 2 when he threw up, I imeddiately thought his Ondansetron had worn off, so I gave him more. It is a dissolve under your tongue kind of med, so it should have started working quickly. It didn't work AT ALL! He kept throwing up. I gave him Gravol at about 3 but he immediately threw that up, too. After he vomited 8 times in 2 hours, I called the hospital and asked them what to do and they told us to come in. While we were waiting for the cab, he threw up one more time.
4.We got to emerg and it was standing room only. I found a place down a little hallway where he could sit all alone and away from all the sick and possibly contagious kids in emerg. I was told that behind the door he was sitting beside was a very aggressive psych patient, but not to worry - the door was barred from the other side.... yikes! He threw up once more and then they fast-tracked him through to a room where a very nice nurse had to access him (put the needle in his VAD) without the numbing cream I usually put on. He was worried but when it actually happened he was ok, but not impressed.
5. One of the oncology doctors came and saw him in emerg and decided to admit him over night. So that is where we are. He did stop vomiting at around 6:30 when they gave him a huge syringe full of gravol into his IV and he fell asleep by 7:30. That hour was spent doing this:

In all, he threw up 12 times and so they put him on more Ondansetron, gravol and a lot of fluids, in hopes that if they interrupt the nausea, it will go away. Hopefully he isn't sick from that chemo today. He will already be worried about the poke - I don't want him to be worried about the vomiting, too! Anyway, we'll be here until tomorrow sometime and then on Wednesday he'll need two more pokes and then Friday and then MWF next week too. Please pray it goes well for him.
Well, I am feeling a bit like I have taken gravol, too, so I must bid you goodnight, lest i fall asleep typing.....

"Mom, you need to write on the blog right now!"

Noah is starting to boss me around. :) (smiley provided by Noah...)
As long as he is taking ondansetron, the anti-nausea med, he has been feeling great this week. He has lots of energy and is goofing around a lot. It is good to see. Thanks for all your support and prayer in this area.
We had a fabulous time with my sisters, Denise and Julie, when they visited us last weekend- we went shopping at the mall, we ate a lot of sushi, we went to church, we went geo-caching (and even found two!!), we found my new favourite store (David's Tea),and we went to Toys "R" Us where Noah made a dent in a gift card he received. He bought a lot of Lego, we bought a lot of tea. Mmmmm.... Mint Chocolate Rooibos, anyone?
Noah bought Star Wars Lego and spent quite a bit of time building it the last couple of days, at the expense of homework, I'm afraid.... : ) (yet another smiley provided by Noah, lol)
We were out so often we had to be very creative with Noah's chemo meds. He takes one called 6MP that I have to give him on an empty stomach, eg, two hours after his last meal and then he must wait an hour before eating, so it is sometimes tricky to give it to him at the right time. Anyway, two days in a row he had "Mall chemo" and once he even had "Park chemo" while we were geo-caching with Denise and Julie at Queen Elizabeth Park. I thought those were pretty clever names, but he was unimpressed. Hmmph! What cheek!
I just want to say a big thank you to everyone who has not only supported us in prayer, but to those who have given us gifts, and who have supported us financially. I heard about the fundraiser at BV Wholesale last weekend and I was blown away - $2200!!! WOW! and John Mc Ewen shaving his head! I hope someone took photos of that! We have also received money from people who have donated through our church, and it has been SUCH a huge blessing, to not have to worry about that thru all of this. We are actually in the process of buying a newer van, having been told by our very honest mechanic that it is time to look for something more reliable, since we will be making a few trips back and forth this year, and the transmission in the other one is starting to act up. So some of that money will go toward a newer van. Thank you very much. You are a blessing to us and we thank God for you everyday. And Tom is especially thankful to all the people who are feeding him! It has been so great to not have to worry that all they are eating is KD and Campbell soup, lol! Not that he can't cook, he can, but now he doesn't have to worry about what to make for supper on top of everything else- you have taken such good care of them while I am away. Thank you. Thank you. Thank you.

So, today Noah had his first dose of the second set of ARAC, the one that made him so sick at Easter. He will have it tomorrow, Sunday and Monday as well. Please pray that this time it won't cause such a high fever and such nausea. So far he has been ok, but it didn't happen until the second set last time...

Remember a few blogs ago when Noah had a reaction to the l'asparaginase? In case you are new, he had an anaphylactic reaction to one of the chemo meds that was to be given by IV, but because he is allergic to that formulation, he must be given a different formulation by intramuscular injections into his quadricep. The one IV dose is replaced by six, (yes, six) injections over two weeks. That was where I mentioned it could impact the amount of time we can spend at home. If it were not for the l'asparaginase, we could have come home on Friday, but now he will need to stay an extra two weeks and have those injections. Poor guy. He is really not looking forward to that. Thankfully we have EMLA, the numbing cream, so he won't feel the pokes so much. I think it will still be fairly intimidating to have big needles poking into his leg.... sigh....
Seriously, though, we have been so impressed with how brave he is!! He doesn't cry when he gets poked, he just takes a deep breath while they count, "1-2-3" then put in the needle or take blood, or whatever. Our doctor paid him a huge compliment this afternoon when we met with him. The first thing he said was , "Well, Noah, you are a real trooper. What I'd like to do is get you up in front of our teen group so you can show them how a real man handles things." He was half joking of course, but he was seriously impressed with how Noah is brave through pokes and all of his reactions, etc and just takes it all in stride. Apparently there are teenagers who are not as brave, who need a lot of coaxing and convincing to get needles or whatever....(?) We met another 10 yr old boy who has to come in a day before his treatments just to be accessed (have the IV tube attached to a needle into his VAD) and it takes about an hour because he is crying and having a fit! After our meeting was over, he ushered us back into the waiting area where there was an 18 yr old boy who was also recently diagnosed with Leukemia, and Dr. Davis introduced Noah to him and said to him, "This kid is your role model." I was so surprised; I had never thought of Noah as being particularly brave (sorry hun, lol) but in that clinic, everytime we go in he is continually lauded for his courage and composure. Well done, Noah! We are so proud of you!

And now for something completely different... Green Men???

Sully and Force !!!

Noah handily beat Sully in a game of foosball... and I mean handily! I should say, the poor guys can hardly see, but still.... This was REALLY cool...
The Green Men came to Ronald Mc Donald House this afternoon to visit us! They are very nice, they signed 8x 10 photos of themselves and everyone in the house had their picture taken with them. Even me.

They only gave Noah a little flack for being an Oilers fan...

But all was forgiven when Noah gave them a tour of the house.

My, my, my.... aren't those attractive suits.... =S

They were invited to stay for dinner, but obviously it would difficult to eat tacos in that one-piece getup, so Sully joked while rubbing his belly that he was watching "this figure", to which Noah quipped, "Are you worried you're gonna snap your suit?" Hee Hee, too funny...

That was very fun. It caused quite a stir in the house; we had dinner made for us by 12 people from Scotia McLeod tonight and they were more excited than most of the kids!

Back to reality: tomorrow we head to the hospital at 8 am for an all day affair of cyclophosphamide, the chemo drug that he has to be well-hydrated before and after it is administered. He will also get ARAC, the one that gave him such a high fever last time. That didn't happen until the 5th or 6th dose, so we'll see what happens. He also was nauseous last round; please pray that he will not get sick this time - it is just awful.

On a happier note, two of my sisters, Denise and Julie are coming to visit us this weekend! We can't wait!

Enjoy the long weekend everyone!!

Heading South....

We are heading back to Vancouver tomorrow because Noah's counts were really good today! His hemoglobin was 103, his white blood cells are 1.7 and his Neutrophils are 1.3. The WBC and Neutrophils needed to be at least 0.75 to be able to continue treatment, so he is in great shape.
He has lots of energy and is joking around a lot and pestering his sisters -who seem to have forgotten their promise that he could pester them as much as he wanted to....

Last night we were looking at the Cafe Press website; they have some hilarious t-shirts. I ordered a few for our family including these ones for Noah:



I thought those were pretty awesome. We also got some shirts with orange ribbons on them as above for Emily, Miranda and Alyson. They are already asking me when they will arrive.... silly.

Thank you to everyone who has offered to make meals or bake for Tom and the girls while we are away; that will be super helpful! We are so thankful for this community - thanks for your prayers and notes and gifts; we are blown away by your generosity!

Well, I suppose I should go and pack... hopefully I can manage to pack a LOT less than I did last time! I left a big bag of books with my aunt and uncle, one of those Safeway foldable shopping boxes in the apartment of the night manager at RMH (thanks Michelle!) and when we flew home, my suitcase was still overweight! I am going to be bold and assume I won't need a lot of sweaters...right Lord? It is going to be warm in Vancouver, right??? ....please....?

Still here.....but it's ok....

Yep, we' re still here. Noah's counts are very low; his neutrophils are at 0.1 and they need to be at 0.75 to be able to return to Vancouver for treatment. Normal range is 1.5 - 5.6. This means we need to be careful not to come in contact with anyone who is sick, because he just has nothing to fight off an infection.

Which is why I spent the evening in emerg with Miranda tonight. She came home from school today with a rash on both of her legs and I thought I should find out if it is contagious or not, just in case Noah could get it. Thankfully it seems to be a contact dermatitis, but we had to sit at the hospital until 10:30 to find out. Poor girl, she was so tired... So, if you saw our van at the hospital tonight and are worried it was Noah, he is just fine, thanks!

Miranda is so sweet. I said to her as we were leaving, "Thanks for putting up with me dragging you to the hospital when you feeling fine. Sorry about that." Her response? "It was just 2 1/2 hours, better than Noah getting sick and having to spend WEEKS in the hospital! 2 1/2 hours isn't very much." My goodness, my kids are way too awesome!!!! Thank you Lord for these kids!

Noah has actually had a fun week- before we knew how low his counts were, he actually spent an afternoon at school. He played intramurals, stayed while the class opened up the eggs that didn't hatch in kindergarten this year. (He wore a mask, but it wasn't necessary, really- they weren't diseased. The chicks in the eggs were fully formed, ready to hatch, but because of the humidity in the incubator, the shells became too hard to break through, so the chicks died when they couldn't hatch. Sad, eh?) He had a great time and was really tired afterward, but felt it was totally worth it.

Initially, I was disappointed when we couldn't go back to Vancouver this week, because it means we can't be here for the Relay for Life, and because it pushes back the date he can return to school, etc. But I realized that I have to stop thinking about that, and just enjoy the time at home with my husband and my girls and not worry about that stuff. If he needs to be homeschooled for all of grade 6, it is NOT a big deal. It doesn't matter. He will be fine and we just need to stop worrying about that. It also takes away from my time with the girls, and that is not fair to them. So, I am going to enjoy every minute I have here. Noah is already doing that; what a good example he is to me! Ultimately, it isn't in my hands, anyway. I think I already wrote about that in an earlier blog - the quote from Jesus about how worrying does no good at all, won't add an hour to your life, or an inch to your stature- now I just have to remember it applies to everything, lol!

If you're in Smithers tomorrow, the Noah's Ark of Hope Relay for Life team is having a garage sale at 4501 Alfred Crescent, please support the team in raising money for Cancer research! Thank you, and please keep praying for us, that our time at home is restful and good and that Noah will not get sick while he is here. Many many thanks for all of you and your support....

I just wanted to write a quick note to let you know we are home (!!) and had a wonderful weekend with family and friends. We will find out on Wednesday whether or not Noah's counts are high enough to go back for Friday. I am hoping we will be able to go on time this week because if he can start treatment on Friday, we can be back in Smithers for the Relay for Life on June 4. If there is any delay, we will miss it. That would be sad. I will keep you posted...
Oh, I have had a few people come and ask me how to post comments and so I am going to tell you right now:
At the bottom of each of my posts there is a word you can click on that says "Comments". If you click on it, all the comments people have posted show up, and if you scroll down to the bottom, there is a line that says "Post a Comment" and a text box. You can write your comment in the box and then you will be prompted to use a profile. Click on that arrow and you can choose "Name/URL" and you can post your comment with your name without having to register with Blogger. I hope that was a clear explanation... please post something and let us know you dropped by! We LOVE reading all of your comments!
Anyway, I am going to go to bed and have a great night's sleep in MY OWN BED! *sighing contentedly*
Good Night!

A really great week! And a long post to tell you about it....

I am happy to report to you that Noah has completely recovered from the allergic reaction and is almost back to his own normal (?) self! He is joking around, making witty remarks and happy to be outside doing stuff. We ended up staying in the hospital until around 7:30 pm on Saturday because the Dr. looked at his counts and decided around noon that he should have a blood transfusion, which was fine, but they didn't start it until 4! It is hard to sit in a hospital room in respiratory isolation when you are feeling perfectly fine. He was still coughing a little bit and they are always cautious when a kid is coughing. We watched a couple of movies and played on the Wii and then around 5 my Grandma, my uncle Ed and Aunty Irene and my cousin Meagan and her friend Darren came for a visit, which was awesome! By then the Dr. decided he wasn't coughing THAT much so they took the sign off the door and we could show them around the hospital. (They even gave me the code for the school room so we could show it to them, shhh!)
They gave us a ride back to RMH and we could show then the house too. There was time for a quick game of foosball with Darren, which Noah won. (He is very modest, though and is quick to say Darren scored more goals than he did, but Noah scored the "next goal wins" goal.) I love being able to show people how well taken care of we are here.

We had a very nice visit with my mom, too. She was here from Wednesday night to Friday afternoon, then Sunday night to Tuesday. We played games, watched movies, and just hung out. Very Nice.

I just love it when Noah is happy. He is the sweetest guy. My mom just couldn't get over him while she was here. For example, now that Noah can't have the IV chemo he reacted to on Friday, he needs to have it by injection, and we were talking about it with Tom because understandably, Noah is worried about it. Tom was trying to help him put it into perspective and asked him, "It won't be the worst thing that you've experienced, though, right? Like, what is the worst thing that has happened to you?" Noah said, "I don't know..." So Tom asked him again, "C'mon , what is the worst thing?" Noah's response? "Well, lots of good things have happened too!!"
He is amazing.
I thank God everyday for his positive outlook and his sweet way of always looking for the good in every situation.
Then, Tom was trying to end the conversation and said (in his Tom-ish way), "So, any questions, comments?" to which Noah replied, "I love you...." This, of course melted him. and me . and my mom. He is so sweet. I hope he stays this way forever.

I don't think I wrote on the blog that Noah got to meet Christy Clark, did I? I can't always remember what I write where.... Anyway, he got to be in on her press conference where she announced funding for the new RMH they are building here at the Hospital. He had his photo taken with her and his arm was on TV! He was at the other end of the table from her, so he didn't make it into the picture. The Province carried a photo of everyone at the table, and even had his name on the caption.
We have been enjoying Vancouver in the spring, doing lots of things outside. There is another mom here who has lived here her whole life at RMH so she is showing us around and bringing us to neat places, like Jericho Beach where we found little crabs and a duck pond that is actually a beaver pond with a lodge and everything. Noah loved exploring there. Last night she brought us to Queen Elizabeth Park where they have a beautiful garden built into an old quarry, so there are rocky cliffs all around and bridges and lots of different flowers so Noah climbed up the rocks and explored all around and found the weirdest looking plants, like the rhubarb plant from Brazil that looks like an alien in the spring when it is just sprouting.

Okay a prayer request for y'all...We are booked to come home on Friday afternoon! That is not the request - this is: that his clinic day is over on time for us to make it to the airport for our flight at 5:45! Because sometimes stuff happens that you can't control, you know? ; ) So please pray that the appointment goes quickly so we can come home.

Noah has an appointment in the clinic for a Lumbar Puncture at 10 and he needs his inhaled antibiotic and some chemo. The antibiotic takes about half an hour because it goes through a nebulizer which isn't what takes a long time, it is the fact that he needs to be in an isolation room, which could be an issue, because those are always in high demand. They put kids who are coughing or have anything which could be contagious in any way in those rooms to protect the other kids who have suppressed immune systems, and then everyone who comes in has to wear a mask and a gown that they take off when they leave so they don't carry anything to the other patients they see. In fact, I think of all the times we have had clinic days, he has been in isolation more often than not. He has been an isolation room hog. (Just between you and me, I like it when he is in isolation, because then he gets his own tv, there is room to put your stuff, and it can get kinda crazy in that playroom!)
So, yeah, if you could please pray that everything goes quickly and that he won't need a transfusion so we can make it home as quickly as possible, that would be awesome!!!!
Noah misses his dad. And so do I.