High - Dose is right!!

Yes, this part of Noah's treatment is called "High-dose MethoTREXATE" ( I copied the word from the bag and the capitals are just like that on the label. I know. Weird.) He certainly had a high dose!
That big bag of yellow stuff is the chemo they are giving him this round. He gets two bags like that over 23 hrs- 1.6 litres each - and then they do bloodwork to see how much is in his system. After that they super hydrate him to get it all OUT of his system. Hopefully his kidneys are working well enough that he can get it all out within 2-3 days, and then we can go home!

He is done the chemo part, so now his sole job is to pee. A lot. They come to remind him every two hours and even wake him up every two hours at night! I guess it can't sit in his bladder for very long, and they just want it out of him. It is a very strange thing. Pump him full of it as quickly as possible then get it out of him as quickly as possible, because it is toxic.

He was funny tonight - we were discussing how his urine is the same colour as the chemo and he said, "it practically is just chemo. I think they re-use it!" He said this because he has to pee in a bottle and the nurses have to test it to make sure he is hydrated enough (he probably isn't - he hasn't been drinking anything, either) and that it isn't too acidic or alkaline, etc, so he was imagining them just collecting all of his urine and, well, you get the picture....

We arrived yesterday in the morning and thanks to John Bakker, who gave us a ride to the hospital from the airport, we were way early for Noah's 11:30 appointment. As usual, Noah got sick while we were at home - it happens every time- so we had to sit out in the hallway with all of our luggage until they had an isolation room ready. It wasn't so bad, but every one who walked by had a comment, which I found strange, this being Vancouver and all, where no one even acknowledges you with eye contact, let alone speaks to you!

When we did get in to the clinic, they were getting ready for Noah's LP when the nurses realized the pharmacy had missed making the chemo. So they quickly got that together (as quickly as something like that can happen) but by the time he went in for the LP, it was about 1:30. Here is where his not having an appetite was a good thing - he needed to be fasting for 6 hours prior to the LP which was supposed to happen at 11:30, so he didn't drink or eat anything since the night before- he didn't care that it was late. In fact he was quite pleased. He is a bit of a brat....

Thankfully, we had a distraction. We had some pretty special visitors, all the way from Indonesia! Gregg and Sylvia Faddegon, Sharon Endacott's parents, came to see us at the clinic. They knew their way around the place because about 10 yrs ago, their daughter Jessica was diagnosed with cancer while they were teaching in India, and they rushed back to Canada so she could be treated at Children's. Some of the nurses even remembered them. It was a very nice visit; even though we had never met, there was a bond between us right away. And once more, I wish I had taken a photo.

I think about that every time someone visits. After they leave, of course.... : ( It would be so nice to have a physical record of each visit; there have been so many special people who have made a special trip to the hospital or to RMH to come and see us, give us a hug and pray with us. We love having visitors. So thanks to each one of you who has made the trip to visit us or just fit us in while you were here; we really appreciate it! (....and thanks for the IceCapp tonight, Uncle Ken and Aunty Helene. Yum!)
Well, I should probably get to bed before the nurse comes in to wake Noah up. It is almost time to pee again... oops, here she is... good night all!

Thanks to all of you who have been praying for Noah; thank the Lord, his temperature has not gone any higher. It is still high for him, though, his normal temperature is 35.9-36.5 and he is now at 37.7. Hopefully it doesn't go any higher until we get to Vancouver!

Going back to Vancouver on Friday!

We had a pretty awesome day. We went to the hospital first thing for bloodwork, then to Schimmels for coffee with some friends, where Noah ate 1/2 a chocolate eclair. (Yes, it has come to that, me being excited about every bit of food that passes his lips, lol!) Then we went home for a bit and at lunch time we went to a birthday lunch for a dear friend's 50 th birthday. It was a lot of visiting but I really miss my friends when we are in Vancouver, so it was nice to have a few chances to meet up with some of them.
This afternoon we got the results of the bloodwork that show Noah's counts to be ok; his Neutrophils are at 0.8, his white cells are at 1.6 and his hemoglobin is 91. I was surprised that his hemoglobin only went up by two while the others went up by so much. He originally had an appointment at 10:30 am on Friday, but I managed to change it to 11:30 so we can leave on Friday instead of Thursday.
I was of two minds about going back. On one hand, of course I want to get it over with, but on the other I don't want to miss the last assembly tomorrow and Emily's grade 7 graduation, etc. We usually fly Hawkair, thanks to Cindy Hamhuis and her colleagues who have donated buddy passes so we can book flights at the last minute like this, but they only fly to Vancouver at 8:30 am. We wouldn't make to to the hospital on time if we had to be there by 10:30, so we had to go on Thursday, but then I would miss all the end of the year stuff, so we compromised. Well, Noah compromised, since he is the one who has to fast for an extra hour on Friday now, lol! He decided it would be better to leave on Friday and, strangely enough, he didn't mind not eating...
He has gained some weight while we were here, he now weighs 70.1 lbs!!! He is especially proud that he weighs more than Miranda. Too funny.
Well, I have to go and tuck kids in now and get ready for tomorrow... ta ta...

**Edit**

Prayer request- Noah is beginning to spike a fever. He took his temperature just before bed and it was 38.2 degrees. It has been going up steadily all day. I am not surprised, really, since there is a terrible cold going around and Tom has picked it up too. Noah started coughing yesterday and I gave him some Cold FX to see if that would work. Apparently not. We will check him before we go to bed and if it is over 38.5, I will take him in. (I don't want to sleep in the hospital tonight... ) Please pray that the fever goes down.....

Enjoying ourselves...

...yeah we are! We are at home now, and will be for at least two weeks. Noah is scheduled to be back in Vancouver on June 24 at 10:30 am. Whether he will be ready to go remains to be seen; he went for bloodwork this morning and his Neutrophils were at 0.00. They only found two when they looked at the sample! So basically that means he has 0.00% chance of fighting off any infection while he is here. Hmmm.... maybe he shouldn't have gone to Timmy's with me this morning for breakfast... or to school yesterday... or .... or... sigh. This is one of the hardest things about this part, telling him,"no, you can't do that, it's too risky, etc. " He is generally feeling fine, but he looks very pale, so I was sure he would need a transfusion today. But no, his red blood cells are actually up from Friday, so that is good news! He did go to his friend's house today - their house is WAYYY cleaner than this one at the moment, so it was ok, lol! (and no one was sick there...) He has been eating a bit better - it is almost 10:30 and he is still up, having a snack. Dr. Davis told him he needs to gain at least a kilo while he is here. He is doing ok, but supper time is still a struggle.
We have had some fun here; our church had its church picnic and worship service on Sunday out at Rough Acres Bible Camp. It was so nice to see everyone who was there, eat good food and enjoy RABC, one of my favorite places on earth. I'm sure going to miss it this summer!
Yesterday a very cool thing happened. There are some girls in our school, four sisters who have long beautiful hair, who have been fundraising for us. Yesterday afternoon they cut off their hair and donated the ponytails to the Canadian Cancer Society to be made into wigs. They were able to raise a lot of money (over $1800!!!) plus three flights!!! Thanks Veronica, Gini, Tori and Tessa! If you haven't seen the pictures I posted on Facebook, here is the link; for some reason, blogger won't let me post the actual photos....

https://www.facebook.com/media/set/?set=a.10150202042525940.309663.541555939&l=e62ac56445

They let Alyson, Miranda and Noah cut three of the girls' hair; it is so thick, it was quite a lot of work! Poor Miranda had to give up cutting Gini's hair and hand the scissors over to someone else to finish the job, lol! Noah, true to form, decided it would be funny if he showed up to cut Tessa's hair with a huge set of pruning shears! The look on Tessa's face was priceless! What was even more comical was that they had planned to give him nail scissors to cut with! It was all very funny....

The people in Smithers and Telkwa are amazing. We have been overwhelmed by the unbelievable generosity of the community here. On Saturday our good friends Elaine, Stephanie, Maria (actually, we don't know Maria, but she helped anyway - wow, thanks!) Diego, Rhonda and Dorothy held a BBQ fundraiser at the BV Home Centre tool sale. In a few short hours they raised $2000!!! We don't know what to say, except a teary-eyed THANK YOU. We have been rendered speechless, and that is quite a feat, considering who we are talking about here!!
We have decided to put a lot of this money toward a new van. Our 1998 Astro has been a good friend to us, but recently the transmission has been acting up and we were advised by our good friend, who is also our mechanic, that it is time to look for something more reliable, especially because we will likely be driving back and forth from Vancouver a few times this summer. We have decided to buy a used Toyota Sienna. We have been driving it since Friday and it is very nice and should be a good van for a while! Some of the money will be put aside for travel as well (for flights, etc).
The next phase of Noah's treatment is completely different from what has gone before and what will come after. He will need to be admitted to the hospital for 3-5 days out of every 14 this summer. So, basically 4 days on, 10 days off. All summer. And I think, so far, that we can be home or wherever for the 10 days off. As many of you know, Tom is a teacher, so that means our entire family will be able to spend most of the summer together!!! As much as I was unhappy about the delays Noah experienced the last couple of starts, it turns out (again...) that God knows better. Who knew, lol? If he had not had those delays, that phase would have started in May, and we would have had only part of the summer this way. We haven't yet decided how much time we will all spend down south or here. I don't think we can really plan that yet. We do know we would like to go to Camp Goodtimes but that is all. I am so happy... : )

We are going home tomorrow!!!

As I write this, I am supposed to be packing and cleaning our room, but I can't focus - I am too excited about going home, and I just had to tell you all!
When one checks out of Ronald Mc Donald House, the room must be cleaned from top to bottom, all the sheets and duvet covers must be washed and put back on the beds and the room must be completely ready for the next people to stay there. It is a lot of work and generally takes about 3 hrs. I plan to be completely packed tonight because I need to give some of our stuff to another person from Smithers who is driving home. She offered to take whatever wouldn't fit. We should be ok, though, since my parents drove home and took a whack of stuff, Tom had room, so he took some, too and now Michelle can bring MORE stuff for us... there'll be no need to pay a $75 overweight fee this time! It is really crazy how much stuff we accumulated over a month. Again. I have some food I will donate to the house too. I bought groceries, thinking we would eat more than we did. There were too many family dinners; we didn't get to all of our food, which is not a bad thing - the dinners were wayyy better than anything I would have made!

I received a phone call this evening from a lady I know who had Cancer a few years ago; she was calling to let me know from her experience that there is absolutely nothing I can do to make Noah want to eat. He just doesn't want to, and he really can't. He just can't. I know this, but I guess I am just worried about him, and kids with feeding tubes just look so pathetic!!!



This is just a random picture I found when I searched Google images. Cute, but pathetic, no?

I don't want him to end up with one but I suppose it wouldn't be the end of the world...
Although, they are easy to throw up and the way this kid keeps vomiting, it wouldn't stay down long. He felt very ill and threw up twice this morning and the whole time, I was praying, " No Lord, I want to go home, not back in the hospital... please help him to stop..." And stop he did, thankfully. I don't know about this chemo not causing nausea.... I think in Noah, it does. Really, why not? He doesn't react normally to almost all of the stuff he takes, so why not this, too, lol? Seriously, I asked the Dr. if I should have to give him Ondansetron for nausea with the Erwinia injections and she said "no, it shouldn't cause nausea - although for Noah... hmmm..." She actually said that! We have to go to clinic tomorrow for the last set of injections this round and for vinCristine and possibly a blood transfusion so I will ask her about all of this.....

I was going to try to post some photos of the relay for life in Smithers on the weekend, but I am having trouble getting the pictures from facebook to here, and I don't have time to fiddle too much right now. I will try tomorrow when I am sitting around at the clinic or in the airport...
ttfn, and please leave a comment - we love reading them!!