It is so good to be home...

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

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

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

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

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

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

Maybe you could pray for that too?

New Year...same old place....

I don't feel nearly as down as that title makes me seem, it feels more like "steady as she goes", if that makes sense.  And its ok.  It feels good, actually, even though right now Noah and I away from home; we are in Vancouver, at Ronald Mc Donald House.  Maybe that is why it feels ok. And why I haven`t written for so long - it didn`t feel like there was anything to say....
We had a very nice Christmas here in Vancouver.  We drove down on the 23rd, spent Christmas Day opening presents, going to church, going to the beach (!) and eating a crazy amount of food that was prepared for us by a wonderful family who slaved all afternoon for us.  There were 43 people here for Christmas dinner!  The house was full and it was a very nice day.
We ended up getting two free tickets to the Oilers-Canucks game on Boxing Day, then we bought two more so that everyone who really wanted to go, could.  Alyson and I watched the game from Earls, which was more to her liking.  The seats we were given were amazing - Row 3, right on the Oiler blue line, which was, unfortunately where most of the action was.  When Alyson and I were watching, we could actually see the backs of Emily's and Miranda's heads!  Tom and Noah sat in the upper bowl, surrounded by Canucks fans who taunted them, so they didn't have as much fun as the girls, who had more Oiler fans around them.  Or maybe the other fans were so in awe of the Jersey Em was wearing, they didn't dare taunt her.  She was wearing the vintage CCM Gretzky jersey Noah received for Christmas from a donor to RMH.  Pretty sweet, eh? 

Noah wore the Nugent-Hopkins jersey that my Uncle Brian and Aunt Wendy bought for him, which he was pretty pumped about, and Miranda was over the moon that Emily let her wear her special pink Oilers Jersey. They were all really excited, they put Oilers tatoos on their cheeks and everything.  I think they had a lot of fun.  So did Allie and I, eating chicken wings at Earls, watching them on the big screen.  Apparently Noah was on the Jumbotron, meeting Mason Raymond at the hospital. Em and Miranda saw it, but Tom and Noah were getting popcorn, so they missed it.  Too bad...

The 27th we went to the museum of Anthropology for the afternoon, which everyone loved.  Noah was excited to show all the coolest things to his dad, and explain all the things he has already learned about carvings, etc. 

Noah had a treatment on the 28th, which was fine, and we drove home on the 29th. Tom's brother, Chris, his wife Elizabeth and their children beat us to Smithers that day, and they spent New Years Eve (and day) with us.  The kids had a blast with their cousins playing a new dancing game Miranda received for the Kinect.  It was the activity of choice for the duration of the visit.  (it is a very cool game- even the adults got into it on New Year`s Eve!) Tom and I had a great visit with Chris and Elizabeth, playing Euchre, as in days of yore.... fun. : )

We also had the opportunity to host my sister Jenn`s parents- in -law, Colin and Delia Cupido from CapeTown, South Africa, but for only one night, unfortunately.  They also had with them my niece, also from CapeTown, to meet her cousins for the first time.  It was so much fun.  They hit it off immediately, and they wanted to show her everything about snow.  We did a (very) little bit of tobogganing, which she enjoyed, I think.  I have heard she has since become a bit of a hockey nut.  Way to go Jordyn!

Unfortunately, during this time, Noah was quite ill.  He ended up with c. Difficile again. I brought him in on New Years Eve, but he wasn`t officially diagnosed until the 3rd, when we were at the hospital for bloodwork.  He was supposed to have an appointment at Children`s on the 4th, but when I tried to book the flight, there was only one seat left on the plane, so we had to change his appointment to Friday, which was just fine with me; I wasn`t ready to come back here yet.  We had had a whirlwind break, and Noah was still quite sick with an extremely contagious illness, so we couldn`t come to RMH, either. We stayed at Easter Seals for the weekend, and we got one of the rooms that had been redecorated with laminate floors, granite countertops, maple cabinets, the whole works!  They only have 4 rooms like that out of 50, and we got one. It was a nice weekend, though we spent most of it watching movies - I borrowed all the Pirates of the Caribbean movies from the clinic because Noah had never seen them and I knew he would love them.  It rained all weekend, so we just stayed in, and it was great.

On Monday we got the word that Noah was safe to come back here to RMH and we are very happy to be back with some old friends and some new, too.  It is never dull here!

Noah's treatments have been going well; we had a nice December we were at home most of the time, because the doctors had decided to skip his Erwinia injections for December, and just do the January ones.  So here we are.  I do have a prayer request, however: please pray the injections would be painless tomorrow.  They are usually fine, he has Emla on his legs for 2 hours beforehand so he can`t feel it, but for some reason, it was extremely painful on Wednesday.  Someone thought maybe the nurse hit a nerve, which can`t really be avoided, she would have no idea where they are.  So we are praying that that won`t happen again. He is going to be quite nervous about it tomorrow. 

We hope that we can go home again on Wednesday the 18th.  It isn`t official yet, but so far that is the plan, and we will be there for about two weeks, depending on his counts. Then it will be back here, and Noah will have to go back on Dexamethasone, the steroid that made him so sad before.  I am also praying already now, even though it isn`t until February, that it would make him hungry and that is all.  He lost 400 g over Christmas (who does that???) and then 800g more when he had c. Diff.  I am pretty sure he is down to about 30kg.  It is about time for that Dex...

It also feels like we can see light at the end of the tunnel; Noah will hopefully start Maintenance at the beginning of April, so after that we only have to come here for a day or two once a month! That will be so nice.  I have really come to appreciate home.  My family and friends, my own bed, my own food that I like, and so much more....

Thank you for reading, sorry if you were feeling neglected.  I will write again tomorrow to tell y'all how his Erwinia went.

g'nite!