Thursday, December 30, 2010

Took Richard to the Lodge Yesterday

I took Richard back to the lodge to check in yesterday (Wednesday).

Thank you so much Jen (and her, and her husband, and her mom and dad too) for watching the boys so I could stay for Richard's appointment and spend some more time with him!

I think he had a nice night at home and enjoyed his comfortable bed, but I also think it took a lot out of him to be here.

He's still often in a lot of pain. And, often discomfort.

He had his LBMT appointment for 2pm. I dropped him off out front and took off to go park the car.

His appointment was just supposed to be to get a bag of fluids and some meds, but you never know, right?

I got a chance to talk to the nurse some more. It's actually a virus in his bladder. It's not just the scarring. She kind of described it in a what-came-first-the-chicken-or-the-egg kind of way. When someone gets a stem-cell transplant and gets drugs to keep the graft at bay and more drugs to keep the GVHD (graft vs. host disease) in check, it suppresses the immune system, obviously, allowing for more chances to get a virus. But, you have to do it or the GVHD will take over. Jeepers, I hope I'm explaining that correctly. Richard did have the first signs of the GVHD a while back (the rash on the arms, the vibrant green puke).

We are just waiting for the virus to leave and the bladder to heal.

People have asked when he'll start to feel better. I don't know.

But what I do know is that if it weren't for this bladder situation, he'd be a lot stronger and feeling better. This kind of threw a wrench in the plans of getting stronger for the time being.

Just about 10 minutes from the end of his appointment, his 'chemistry' results came back (magnesium, potassium, creatinin, etc - I don't know if I spelled those correctly). His Creatinin levels had doubled which isn't good, but isn't surprising since he was taken off the constant fluid drip when he was going to be released from the hospital. They now wanted him to come in twice a day for his appointments to get enough fluids and were going to be hooking him up to another bag right then (adding another hour onto his appointment that had already been 1.5 hours). Richard and one of the nurses convinced the doctor to just let Richard do the other daily bag of fluids at the lodge or at home at night. That doctor had obviously never heard of a patient doing that themselves, but the nurse had, many times. She did say, "For certain patients" which I think means, patients who are capable and clever enough to be trusted to do the hook up to the Hickman Line properly and without a problem. Richard is definitely that guy and has already done his own fluids before (as long as there aren't meds). There is a hook right above his bed at home and at the lodge for hooking up the bag of fluids.

The doctor seemed pleased with that.

Another question that has been recently asked of me is "Why can't they do THIS in Abbotsford?"

He's not just going in (like when he just got admitted) for the bladder situation. He has to be in regularly at the LBMT. The only place someone goes for their Leukemia check-ups and appointments is VGH. If he were admitted in Abbotsford for all of this bladder stuff, there would be no one there to do all the things that need to be done and checked for his Leukemia/stem-cell transplant.

Yes, Abbotsford has a Cancer Clinic, but it's for Cancer, not a blood-Cancer like Leukemia.

I hope that explains that properly.

Keep the questions coming! I don't mind answering them at all.

After his appointment, around 5pm, Richard was feeling up to joining my dad and I for dinner!
My dad got us skookum seats right beside the bathroom for poor Richard.

Richard got to have his beloved beef-dip. It was a great kid-less dinner (thanks again, Jen and thanks, Dad)!

I dropped Richard back off at the lodge around 6:45pm and headed to Jen's for around 7:45pm. Rather than just picking up the kids who had recently gone to bed, I was invited to stay for a vodka and pepsi (it was raspberry vodka), YUM. I'm pretty much a non-drinker (not to be confused with an anti-drinker), so it was a special little treat for sure!

We retired to the basement (after visiting and chatting with Jen's mom for a bit to talk about Richard) to play Rockband!!! Woot woot! We rocked it out until about 11pm or later.

Thanks for helping me take the boys out to the car, Dave!

It was COLD!

The boys transferred into bed nicely and got to have a sleepover in Dexy's bed together since it was nice and late and I knew they wouldn't goof off.

I, of course, having had that darned pepsi (and the one at dinner) proceeded to stay up until, I don't know... 2am.

I have got to stop doing that! It's going to be horrible setting my alarm for 5:30am for work on Wednesday! YIKES!

Richard's mom was heading back over on the ferry today to come stay with Richard at the lodge. I think she took a 12:30 ferry over. Thanks, Norma!

Talked to Richard a few times today. He was okay... no different, really.

Today was a nice day for me and the boys including a trip to the library for a book exchange (we also took out a Charlie Brown movie that the boys loved), a trip to Costco (ugg), and a trip to the skatepark.

Tomorrow is New Year's Eve. I'm skipping out on the festivities. It's been a lot of running around this week and a lot of late nights. I think I'm going to go rent some dvds with the boys tomorrow (for the evening), we got some white-cheddar popcorn (shhhh... don't tell Daddy), and we're just going to be cozy and vegging out around the house. Hopefully, I'll get all the Christmas stuff put away too.

This year I don't have the motivation (of superstition) like I have in past years. My mom always told me (I think it was her) that you have to put away all your Christmas stuff before the new year.

Bah, humbug. I followed that tradition last year and Richard's Leukemia came back!

Hmmmm... maybe it could've been worse though.

ARG. Now I just scared myself back into cleaning up tomorrow, lest something worse happens!

Have a great New Year everyone.

THANK YOU for making this year (and last year) not as horrible as they could've been. All of your love and support in ALL the different ways that many of you show it have made this journey a pleasant as possible.

That doesn't sound right, but I've re-written it five times and nothing sounds better, so I'll just hope that you understand what I'm trying to say.

Thank you.


Stacey said...

Hi Sonja,
We are friends of Bud and Norma's who are following your updates from Baddeck. Just wanted to let you know we are thinking of you all.

Stacey & Ray

Aili said...

Wishing you and all your men the best in 2011.

I'll be back February 1-6th and am determined to make it out to Abby for a visit.

I've also resent the card...please let me know when you get it. Love you tons and tonnes!

Dee said...

All of our love from our little family to yours in the coming year - you deserve wonderful, wonderful things. xoxo

Anonymous said...

Hi Stacey,
Just wanted to say how great a job you have been doing with the posting of Richard's journey.
Our thoughts and prayers are with you and your family. We pray for Richard's healing process.
Don't worry about your Christmas decor. I always take mine down after Jan.6th. (Little Christmas). That's how I grew up.
Big Hugs to you and Richard.
Please say Hi to Norma for me.
Love, Annette

AJ and Dexter's Mom said...

Thanks so much, Annette!
FYI - My name is Sonja! lol

ErIca said...

Happy new year- thinking of all of you all the time.
BTW- asked my sister about the size of the catheter and she said it had to be that size because of the flushing, not out of mean persuasion.

AJ and Dexter's Mom said...


That's what I thought, since 'flushing him out' was the whole purpose.