Tuesday, November 29, 2011

GvHD vs. GPH

I walked into Gord's room to find him sitting at the edge of the bed. Two Physiotherapists stood on either side of him, showing him some leg & arm exercises he can do to keep things moving. He's been in bed for 2 weeks now.

Gord's always been a strong, active guy. When we met we'd walk everywhere - long walks where we talked lots & found out about each other. When the weather turned nicer the walks turned into bicycle rides (that's when I learned he is a leader, not a follower). The first summer we were together we decided to go camping one long weekend in Tobermory. The camp site was incredibly remote as it was along the Bruce Trail. When Gord called to reserve our site, he was told that the trail to get there was 'somewhat challenging'. We paid no mind - "We walk all the time!" And we loaded up our backpacks (like really, really loaded them up) and set off. It was indeed very difficult but just when I was about to complain, Gord would point out something totally awesome & I would shut my mouth. I fell big time in love with him on that trip.

When he was diagnosed with ALL in 2007, I remember just staring at him, wondering how it was possible that he was so sick. He looked so strong. So healthy.

Today I saw that strength. He is still exhausted, and yes, for the most part very weak, but his determination cannot be dampened.

They started him on Campath yesterday & we were told that it would take about 7 days to see if it was going to be an effective way to deal with his GvHD. The Dr told us to mentally prepare for Gord to be in the hospital for at least another 4-6 weeks. This means we'll have to figure something out for Christmas, but honestly I knew this one would be a long stay. I was already prepared for it.

My mom's still here with me to look after Frankie during the day so I can be at the hospital. Frankie is such a doll - such a joy to come home to - she fills this apartment with so much light.

Saturday, November 26, 2011

slow going.

There are very small improvements day by day - the Dr said it was good, better than his condition worsening & that they'll take any little bits of progress they can get.

His diarrhea is still a big problem. Luckily, the amount seems to be lessening. They will keep on with the steroid combo they're currently giving him and if in a couple of days things don't improve further, they will proceed with something called Campath which, we've been told, is very effective as a way of treating Graft vs Host, but comes with it's own serious side effects & risks - the big one being that it will make Gord even *more* susceptible to serious infection.

He's still very weak - physiotherapy comes to do some exercises with him but he has not been out of bed for about a week and a half now. He gets all of his nutrition from a fancy bag of... I don't know what - it's just referred to as 'nutrition' and runs through his IV. He sleeps for most of the time that I'm there with him (I visit from around 10-5, usually). The past couple of days he has been a little bit chatty for short periods of time, usually talking about food. Doubles, bagels, pizza, California sandwiches, Niagara fruit. When he waxes poetic about this stuff is when I know he is still Gord - my Gord, *our* Gord.

Tuesday, November 22, 2011

clerical error.

Last November I was about 4 months pregnant. One night I got a call from my Dr's office - my screening tests came back as 'positive negative' which meant that the baby had a higher risk of being born with an 'abnormality'. I was already scheduled for my 20 week ultrasound the next week & they arranged to have us meet with a genetic councilor at that time. The 4 days between that phone call & the ultrasound were tough. Gord & I had long conversations about what we'd do. Our answer was of course that we'd love that baby like crazy regardless. I was so proud of us & how we handled everything. I was upset only by the thought of our baby possibly having to suffer - and when I cried, Gord held me close. I thanked him so much for being my partner & I'll never forget what he said to me: "3 years ago I was falling, and you held me up. Now's my chance to do it for you."

The day of the scan I was a bundle of nerves - the tech never once turned the screen towards me, but Gord watched our little nubbin swim around. I made him re-enact her (!!!we found out it was a girl!!) movements for me several times for days afterwards. "Show me how her arms were moving!" and he'd flail them up above his head.

When the scan was finished & we were waiting to be seen by the genetic councilor, the ultrasound tech came out & asked if what was written on my forms was my correct weight: 110lbs. "Yes, that's my weight -- in KILOS" I said. "Well now, this is going to change things!" and she marched away. (1 kilo = 2.2lbs... you see where they went wrong there?)

Change things it did - it made my ratio go from something like 1:42 to 1:2000. In other words, the chances of our baby being born anything other than perfect were very, very slim.

It was a clerical error. Just like that. All of our worries got eaten by the universe never to be worried about again and 4 months later perfect little Frances made her big debut.

I've been thinking a lot about that this past week - and about how I really wish this was all a clerical error & someone would apologize for putting us through all of this worry for nothing & we're free to go on our way....happily ever after

Monday, November 21, 2011

diarrhea diet

He gets this for breakfast, lunch and dinner.

They're sending a scope down in his gut to check out what's what. Hopefully they can get this thing under control.

Sunday, November 20, 2011


"Mr High, did they get a sputum sample from you?" The nurse asks.
"Oh yes" says Gord, "They got samples of everything. They got so many samples from me they could make a remix."
Folks, he's still hilarious.

Gord is tucked nice & cozy at PMH. He's making little bits of progress - his kidneys are working (thankyouthankyouthankyou), he hasn't vomited in days, his blood pressure is nice & normal, his heart rate is good.

One of the transplant Drs came by today & told us that his blood cultures showed that he had 'picked up 2 bugs' - he didn't say what they were, only that they'd give him more antibiotics to help get rid of them. This really emphasizes how vulnerable Gord is to illness post-transplant. In the week and a half that he was home he only left the apartment to go to clinic (which was twice a week) he still managed to pick up 2 different bugs.

He's still pretty weak & tired and his diarrhea is next on the 'to fix' list, but he's feeling a little bit better day by day. As one nurse put it: 'This is transplant'.

Friday, November 18, 2011

mega bump

The bump in the road is turning out to be one of those big rollercoaster type loops. The kind that make your stomach drop then feel like it's way up in your throat & then finally it settles back down to where it's supposed to be but it will be a while before you feel *right* again.

Last night Gord was transferred from The General to PMH - about 15 minutes after we got there, he was feeling dizzy. The nurse tried to get a Blood Pressure reading on him but couldn't - so another nurse was callled....and then another... and another... and another... and medics on call & soon it was a flurry of activity in his room & me standing outside just watching. About 4 doctors and 6+ nurses & the mobile ACCESS team from the Mount Sinai ICU all in there, working to make him better.

All I could do was stand outside, watching. Some angel of a nurse stood beside me the whole time, explaining everything that was going on, telling me it was going to be okay. It took what felt like forever, but they eventually motioned for me to come in & be with him. He was bundled up much like Frankie was when she was new - just his head poking out from a cocoon of flannel blankets.

So what happened? His blood pressure was very, very low. His heart rate was very, very high. He was severely dehydrated, he had virtually no electrolytes and his kidneys weren't functioning properly. They literally dumped 5 bags of saline into him (through his hickman & then through an IV they put in his arm). They didn't even run it through the IV pump - it just poured right into him. They took more vials & bottles of blood from him than I thought he could even fill (really - when they walked out with them all I wondered if he had any blood left in his body) to check for any possible infection. 

I called my mom (who is still helping out to the max with Frankie) to give her the update & she said she'd call my dad to come & be with me. Gord's mom, sister & brother in-law also came. Today I realized - you don't know what you need until it's forced on you.

They kept a close watch on him & did more bloodwork to check on his kidney function and finally, they made the decision that he should be moved to the ICU at Mount Sinai - they would continue with the hydration, but if his kidneys did not respond positively to it, then they would go ahead with dialysis. Gord was awake & fairly aware of what was going on - aware enough to comment that he was happy to go there, since their food is pretty good.

We stuck around until we were sure he was fairly stable & comfortable and then it was a slumber party over at my house. I bunked in the nursery with Frankie - not really sleeping... just listening to the tiny sounds she makes as she sleeps & focusing all of my energy on trying to relax & remembering what Gord & I have been sticking to since his relapse in February: Let go, Let God. Whatever is coming is coming regardless - we have to stay close, stay strong, stay ready & stay ever hopeful.

Arlene, Lorraine & I went to visit this afternoon. I walked in on Gord, happily eating his lunch of fresh fruit. "I love fresh fruit. This is beautiful. My eyes lit up as soon as I saw it come in the room." And my eyes lit up watching him eat - it'd been over a week of hardly any eating. Melon to the rescue!
His BP is a tiny bit low, but good - his HR is good, his creatine levels have come down slightly. He is incredibly exhausted but I'd say he's in this game for a while longer yet.

Wednesday, November 16, 2011

Day +33

The past couple of days have been real tough.

Turns out that dehydration was only part of the problem.
Gord's GvHD of the gut is proving to be mighty stubborn. They're giving him a different kind of steroid through IV now - they will wait to see if things improve over the next 2 days & if not, then what we're dealing with is called 'steroid refractory' GvHD & has to be dealt with in a more aggressive way. I'm not going to start worrying about that until it's an actual *thing* though. He's in the General now but will be transferred to PMH tomorrow, hopefully. I'll feel so much better when he's there.

He's weak & tired & vomiting & has terrible diarrhea but thank god he still has his sense of humour which shines through at the exact right times.

My mom is staying with me, minding little Frankie so that I can be with Gord - I really have no idea what I'd do without her here. I was starting to feel like I was just dangling out in the middle of nowhere.

I've seen Gord get through some really hairy situations over the last 4 years, so I am holding onto the fact that genetically, he is made up of like, 80% rubber.

Tuesday, November 15, 2011

new digs.


I've decided to keep the crafts separate from the 'other stuff' that's going on. I don't want to alienate anyone who may be coming to Heyawesome! to check out my knitting projects by getting all heavy about what's going on in my personal life. Also, I don't want those of you who are more interested in knowing what's going on with us personally to have to sift through posts about stuff I glued or sewed to other stuff.

So here then, is 'caregiv'r' - where I will attempt to be a little more 'real' and honest with what it's like to be me.