Christmas Eve at home listening Christmas music..

I made it home today. All my counts are presentable: Wbc 4.6 Hgb 9.2 Plts 116 and Creatinine 1.7.  As usual it was the creatinine we were watching, it was 1.96 yesterday so if it went down and I didn't have a fever I could go! A three day stint in hospital wasn't that bad. I have to say I felt pretty sick while I was there and slept most of it.
It will be nice to wake up in my own bed tomorrow morning...it being such a special one.

Happy Christmas everyone!

BK update

This is Kristy writing again with an update...unfortunately Brian is in the hospital again.  The BK virus has gone from his urine to his blood and was causing a few symptoms that they wanted to monitor closely - headaches, slight confusion, fevers, and rash are the main ones.  Because these symptoms can be signs of serious things going on he has had to have several tests, some of which are not very pleasant - skin biopsies, a catscan of his head, and a lumbar puncture.  We should find out the results of the skin biopsy today (Sunday) and some of the lumbar puncture results too.  The catscan was normal which is great.  They're giving him cidofovir again in hopes to bring the viral load down, but they had to stop the Cipro because of the rash (it is one of the possible causes for the rash).  His creatinine is elevated at 1.9, but it's hanging in there and hasn't gone too crazy.

In the big scheme of things this is a setback but not a major one - BK can cause damage to kidneys but is mostly just annoying and uncomfortable.  There are many more serious viruses out there that could cause major setbacks and complications, so we're trying to keep a clear perspective of what we're dealing with.  The biggest bummer is that he may not be home for Christmas.  Yesterday he had a fever of 101, so he needs to be fever-free in order to be discharged.  I'm not exactly sure what else they want to see, but hopefully we'll know a little more today.  I'll post another update later tonight or tomorrow with any updates.  Thanks for taking the time to read and stay updated - we appreciate you all immensely!

Home - Day +100

We got home a week ago today, the trip home was made very easy by Corporate Angels and the chaps on the plane couldn't have been nicer. We arrived in Olathe (20 minutes from home) and Sophie and James ran out on the tarmac and gave me big big hugs - what a welcome!
The next couple of days I got to bed before the kids, I think a combination of being more active with Sophie and James and a virus has meant I'm exhausted all of the time. On Monday I went in to Clinic and had blood work done and Kristy arrived a little later for a doctors visit. It was so nice to see everyone again, I have missed them. Plus they do an awesome job!
I had Adenovirus checked as well as BK virus and all the other usual stuff. All was fine except I have BK again. I called MSK to see when they last checked it which was 10/10. I guess they only treat if I have symptoms. So I'm back on the antibiotic Cipro. This makes me pretty nauseated and eating and drinking are difficult. I'm glad they are on top of things here but I wish I felt better, hopefully soon.
Being at home is great and I am spending a lot of time with the kids, it's crazy to think I was away from them for so long. And as much as I am loving being at home, I do miss my friends at Hope Lodge.

Day +92

We have had a good week so far. Tuesday I went in for my second dose of Cidofovir; it was a long day because of premeds and IV fluids but I was able to get a full dose (1st time I only got half) because my creatinine was only 1.4.  I got to clinic at 9am and left on the 7pm shuttle so, as I say it was a long day but Wednesday they checked my creatinine again and it was still 1.4. So all the IV fluids plus what I drank protected my kidneys just fine and hopefully when they next check my adenovirus levels they will be lower or even back to normal.

We also had a meeting with Dr Koehne and he agreed that we could travel home as soon as we can get a flight (I can't fly commercial as I am still open to infections). We have called Corporate Angels, a company that donates flights to cancer patients when they're available.

Dr Koehne felt comfortable in having Dr McGuirk look after me - and we are very happy to have him look after me and to be back in KC.  I also had my bone marrow biopsy which was fine, so hopefully those results are good. Two days ago I had my Kappa Light Chain numbers checked (these are cancer markers) and they are undetectable which is great.  So all going well we should be able to leave for KC sometime over the next week - here's hoping!

Okay, I have two updates.  First I got the latest Adenovirus numbers and just before I had the full dose on Tuesday, the number had dropped from 27,600 to 1,800 which is great and so after Tuesdays dose I should be normal. The other update is that my next Adenoviral test will be done in KC! I got a call from Corporate Angel flights today and they have a flight for tomorrow! So we find ourselves madly packing and saying goodbye to the good friends we have made in Hope Lodge. We fly at 2.40pm tomorrow direct to Olathe (20 minutes from our home), please cross your fingers it all goes to plan. 

Feeling much better... partly because Kristy is here.

Kristy got in around 3pm Friday, it was great to see her. Flights went well so her trip was pretty uneventful.
We went in to clinic today to check on my counts and all are fine, creatinine is 1.4 still which is great. We also got the result of Thursdays Adenovirus check and it had gone from 413,000 to 27,600, so it looks like the Cidofovir is working which is great news.
I haven't had a fever since Thursday morning so feel a lot better and am eating fine now. I had got down to 153.8lbs before they flooded me with fluids, but I'm on the mend now. Hopefully all the excitement is over and I'll revert to being a wonderfully boring patient again.

Back to Hope Lodge

I was discharged at 4.15 this afternoon and am back at HL. Friends on the 12th floor had been in touch with Kristy via text and I was given dinner when I arrived and extra supplies of water. These people are all very special and so giving, I'm very lucky to be part of the 12th floor 'family'.

I'm feeling pretty tired although have been fever free since this morning. My Creatinine is 1.4 which is great. My wbc was 1.5 and my anc 1.1 so before I left today I had a neupogen shot to boost those numbers. Other numbers are low but not too bad.

I still have that headache, I think it could have been the bed/pillow which were pretty uncomfortable, so hopefully it is gone in the morning.

Looking forward to seeing Kristy tomorrow.

November 28th So far so good...

I started the day with a fever of 100.4f which is a little bit better than the previous morning. My Creatinine at 7.30am was 1.5 which I was pretty happy with. However it can still go up so I've had IV fluids all day plus pushed fluids orally just in case it helps. My weight went up 4lbs since yesterday! That's how much I've been hydrating. They will check my Creatinine again in the morning and that should show any trend. Also tomorrow they will test for Adenovirus and by Friday we should have a result.
All going well I'll be discharged tomorrow and I'll go back to Hope Lodge. Next Tuesday Dr Koehne plans to give me some more Cydofovir so I guess I'll be admitted for that again.
As Bernie my last 'planned' carer flew home today and I'm really not strong enough to be on my own Kristy will fly to New York on Friday to be my 'super carer', which I am very happy about.
So if I can just get rid of this headache...