Upcoming schedule

Ok, today he's still pretty tired. BP has been up & down, still right around 100/60 something.
Sorry he didn't get to the lights at church, maybe next week or so.
So what's next?

Monday, Feb 25 is blood work and PET/CT scan
My prediction, low white cell count, and a better than 50% reduction in the lymph nodes & tonsils. They were said to be reduced by about 35% last time and that was just by touch.

Monday, March 4 is more blood work and the results of the scans. I think it will be this appointment that will set us up for the BMT. Hopefully at this point well get dates and be able to plan our leave time a little better.

We have yet to get Gil a dental, but I'm working on it; I have a call into a dentist we have used before, just waiting on a return call.
Haven't heard yet about a place for Dani, but I think they are working on a place in Lutz.

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Low numbers

Gil's blood pressure has been pretty low over the 24 hours. I really started to worry at work; he kept saying how bad he felt and how his numbers were like 88/52 or so. All I keep hearing is for him to drink more, but he's drinking almost to excess.

Well this afternoon his numbers were up...100/59...not great, but better!

We are both so tired, hopefully a good night sleep will cure a lot.

round 2 booster shot

3:45 pm
It went better than last time. From what he told me the nurse warmed it and pushed the shot in slowly, so maybe that helped his body adjust better to the neulasta than last time. Overall he is still having a reaction to this week - how low can blood pressure go? 82/52 just before dinner. He has had a little trouble standing up and walking at times.

He has blood work and a CT Scan on Monday. Guess we'll see how much this chemo has done and when the BMT process will start.

Other things going on...updated a bunch of computers at work (shockwave, java, flash, adobe reader & air, silverlight), been taking snoopy for a lot of runs - really need to hit the bowflex as my knee is starting to bug me.

Mom Sterling is still in the nursing home with some mixed emotional moments. Dad Sterling is trying to figure some things out being home on his own right now. Both Lori & Cheryl have been taking a lot of time to care for them.

I think I may have a sub potentially lined up, and house sitters. Just waiting on dates. And it looks like Forte exchange has found a place for Danielle. I feel bad we didn't find a place near Seminole so she could stay at Seminole High...Did we try hard enough? I don't know. I had 4 leads that all fizzled. I still think there is/was someone out there that could have done it, but....I guess it feels a little risky letting a stranger in your house, but the kid probably feels the same living with strangers.

It's coming together...I think.

Round 2, day 3

I actually haven't seen Gil today, so I'm not sure how his appointment went. I have spoken with him on the phone; he sounded tired.

It sounds like there are some light troubles at church. He plans to fix them Saturday...last time, by the weekend, he was real wobbly on his legs. I'm a little worried.

Otherwise, things seem to be going well. Tomorrow is booster-shot day. Hopefully it doesn't send him into a tailspin like last time.

Round 2 day 2

11am out by 2pm (approx.)
This is the 24 hr. pump of Ifosfamide preceded by etoposide. We actually went out to dinner tonight - I was going to go get take-out, but Gil was willing and wanted Red Robin, so off we went and even walked the mall a little bit. (Darn, I should have taken a picture)

He's been a bit warm today; not sure what to make of that. He's also apologizing for hair falling out all over the place...not from his head, but body hair! A little tired, but not as bad as yesterday.
He says the chemo stinks...I'm not sure I smell it, but I have a bad sense of smell.

Things are getting tense in other areas too.

At work they want to make sure my sub is computer savvy and willing to work with guidance during testing. I was recording the directions for the different tests, but started getting grief for that...I should be doing it, that's for the guidance counselors, they need to be live not recorded, editing, blah blah blah

We still haven't found a place for Danielle. We've been going around with the local rep and the district rep and...Forte. It's just confusing and frustrating.

Mom Sterling is in a rehab center and I'm not sure what all is going on there and church has a few events coming up.

Ah...let the good times roll!

Round 2, day 1

He worked a District wide training today with Pinellas county school performing arts teachers. He is the sound guy for the county!

1:15pm out by 2:30pm (except for waiting in line to pay)
Etoposide (VP-16)
It's hitting him a little different today - he's tired, and his left side is sore. I've also noticed he is a little out of breath. A little nap after dinner with merlyn & christian keeping him warm and snoopy keeping watch, unload the car, and tomorrow is another day.

And it's gone

Yup, it came off today, Valentines Day
We still have Danielle with us, so we all enjoyed a nice Valentine steak together.

So, tomorrow night Gil will be helping out with Valentine teen dance at church. Monday, he starts the chemo cycle again, so well be back to day one.

But wait, there's more...

So, shortly after we got back from Moffitt the other day, Mom Sterling was admitted to the hospital after suffering a series of strokes. She had tried to get a hold of us while we were in Tampa to inform us about her doctors visit.

Needless to say its been a rough couple of days. Gil is working closely with his sisters to make sure his parents are taken care of and hopefully get some things settled before he becomes unavailable.

Fun stuff!

Transplant prep-visit

Ok, this is a little nerve racking.
Lets see if I can remember what was said.
Shortly after Gil's next/last round of I.C.E. chemo (the week of Feb 18.?) this process will start:
1. Vital organs testing - scans, blood work, yada yada
2. He comes in for 1-2 days for the cells to be harvested with a white cell booster (neupenogen?) given twice while on a dialysis like machine.
3. 5 days of Chemo: (5) BNCU (4) Etoposide (3) Nma-c ? (2) Melphalan ? (1) booster (0) and the cells go back in. We have to stay local to the hospital for about 5 weeks.

There were 3 people who gave us minor variations of these instructions (nurse prac., Dr. and nurse coordinator), but we got the gist. Guess we'll be living on the USF campus for a while. I never even lived there when I went there!

I'm comparing this to rebooting or re-imaging a computer - wipe out all the cells and put the good ones back in. I also keep having images of the Harry Potter movie where they 're-grow' his bones
(Chamber of Secrets?)

So around the last 2 weeks of March he'll get the vital organs testing and we'll get a schedule then.

So....what to we do about work? How much sick time or leave can I get? What about the dogs? The house? Bills? OMG
Our apologies for putting anyone out...

WBC low

Blood work today - white blood cells are WAY low so, if you are sick, stay away. Gil & I love y'all, but...

Gil feels pretty good today and is considering going to the dog park tomorrow morning - although snoopy has been running & playing with me, he really needs to blow off some steam and run with his doggie friends. Gil has also said his hair feels a little 'crispy' but it sure is hanging on. He feels it needs to be cut...so should he just cut it all off and not worry about the probable? inevitable?

A big thank you to Stephon Moore for helping us out Sunday; helping Gil set up the antenna and get the show going Sunday night. Really appreciate the help. Also to Richard Saunders and Sheila Moree for helping out in the tech booth. We really appreciate your stepping up both on Sunday's and on special events..

If you want to leave a comment, I think you can click on the 'no comments' or maybe if there is one, click on comments,

Snoopy is missing his play-mate...

Hitting the wall

Thursday's booster shoot really did a number on Gil. After 2 restless nights and some issues I didn't know about (a little blood in the urine, not feeling well, the prospect of hospitalization), I'm glad he came home after his shot.

He's really been down the last couple of days. He's tired, but not sleeping well, very weak.
Dani is still complaining of back/hip pain from our little accident. It is getting a little difficult caring for both...overwhelming at times.

So, you say you want to help? we'd love to have someone come take snoopy for a walk, throw the wubba, or something. I've been taking him for runs and as fun as that is,, I'd like to go for a run alone.
I may also be looking for someone to pick up Danielle after school on Thursday, as Gil & I will be at Moffitt in Tampa for his bone marrow pre-transplant appointment; just not sure I'll be back in time to pick her up.

Day 4

Appt. 2:30pm
Booster shot

Still no paperwork from the last two days, but I do have a hefty bill for all the stuff since Jan. 2nd.
Last night was another rough one. One of the drugs irritates the bladder, so after a 24 hour infusion of liquid as well as the Dr. wanting a lot of hydration, urination follows..

Plans for today fell through due to fatigue - lack of sleep among other things. The Emend had done a wonderful job of keeping the nausea at bay during chemo.; now it is after. I've noticed. He is keeping the bucket close by.

Heartbreaking.

oops...forgot to post....