Tuesday, May 3, 2016


I figured whatever I came up with for a title would make about as much sense as that. (If you are from Reykjavik I meant no offense). But I would like to point out I spelled Reykjavik correctly the first time I typed it. I think that was due to all the Scotland Yard games we played when I was young. 

So many things going on, its hard to keep them all straight. Not that I needed an excuse. It has been very warm today. I mean, so hot the kids didn't want to be outside. Yet when they did, they felt completely comfortable to strip their clothes and pick up sticks as they pranced around the spent embers left over from a cook-out in the fire-pit. And when they tired of that, they took off  their diapers. I was alerted to the Lord of the Flies re-creation when Fiona came running to the back door wearing only one shoe. One new shoe. Which I had just bought that day. So even though I would like to have stayed in the cool house, I was inspired by the thought of keeping the shoes together for at least a whole day and followed her out. It was on the way she told me what was going down.

And I mean down. There was Malachi, completely naked. His diaper was lying  in the pile of dirt which is the kids inspiration for all kinds of fancy soups. And in an instant can also be used as war paint. And at that moment was the dumping ground for what used to be in Malachi's diaper. And was now on Fiona's shoe.

Her new shoe.

After cursing the poo gods, I cleaned up the yard, scrubbed her shoe (plus Malachi's for good measure) and went back to doing laundry. Fiona followed me up and I could hear her playing and talking about squirrels, her favorite, and then I hear the papery Velcro sound of a diaper being removed! I ran to catch her just in time. Sort of. If by just in time I mean before she painted the carpet and walls with her excrement, then it was in time. I swooped her up and plopped her onto the toilet to see what sewage we could salvage. And if by salvage I mean smear what was on her all over the toilet and seat, then we were definitely salvaged. Oh so much salvaging these days.

It was at that point I realized I had no diaper wipes to clean her so I carried her to the other room to find some. Finally got her cleaned up and went back to doing laundry. When I put away the towels I discovered I hadn't quite finished  salvaging, so I grabbed the Lysol wipes and went to town.   I finally finished putting the bed together along with whatever unfinished tasks I happened upon. Leaving plenty for the next day as well. Potty-training two kids is really quite an effort. And I don't actually do much. Just give reminders and clean up messes. I don't know what I am going to do once we've finished. Oh, I know! I'll finally finish the rest of the unfinished tasks I didn't get to. Haha!

We  still lave not gotten our Skype with Florence re-scheduled. Every day goes by and I can imagine all the other prospective patients chatting with the Dr. packing their bags, losing their hair, and going home. I know everyone is busy, but it really is ridiculous how slow the communication is. We applied to another clinic and sent all the required paper work plus more. By this time Shane has put together a comprehensive introduction packet  with CDs so there is no latency on our end. A couple weeks later, they asked for more. We sent them more. Two weeks later they said they might have us fly in for an evaluation. Shane said whatever, whenever. We are available. A week goes by. Shane reaches out. Three weeks go by. A month. Nothing.

So we are left with lots of time to think, re-think, search, and re-search for any bit of information I have not yet learned in all my researching. Of which there is much. Researching and what I have not learned. Sadly, in some exploring, I have come across something that makes my blood boil. Many people have benefitted from HSCT and their MS has been stopped. What has not been stopped is the fallout from all the steroids prescribed for them over the years. Many times I was offered steroids for various 'presents' courtesy MS. I asked if it would help long term. No. It will just help you walk sooner, see sooner, swallow better, or return to whatever is your nee normal sooner. But it has no long term benefit on actual disease course. I totally get why people do it. If you've got a job, and  a family to take care of, a few days can be the difference between being able to do that, and not . So, why not.

 I considered it when I had walking issues when Fi was a baby but I decided I'd rather not disrupt her nursing and lose sleep over her being sad. So in the end I went with more sleep and declined. What no one ever told me ever in all the 24 years of relapses, is that an irreversible consequence of long term  high dose steroids is AVN , avascular necrosis (not to be confused with bird ailments though birds do  have hollow bones, so maybe there is something there.) Avascular necrosis is a condition where the blood supply to the bones becomes clogged and the bones starve to death. And crumble. If you have read Marc's blog, you can see how painful and debilitating this is for him, because MS wasn't enough. So far the only treatment is a joint replacement, if you are not too bad off to handle it.
Just to note, three alcoholic drinks a day for several years can also contribute to developing AVN. Again, thanks to pregnancy and lactation, I've also been spared this opportunity. Though it is said to be a 'rare' side effect, it seems its not too uncommon in the MS population.

 I'm thankful I have never partaken of it, though it was not do to the warning labels I was never even given, or the due diligence of doctors informing me of the risks. From what I can tell, not many people were aware of the risks, and now that their bones are disintegrating and they can't walk again, this time not due to MS, say they would never had chosen it had they known.

Then Shane brought a recent trial to my attention involving the brightly colored unicorn poop MS treatment, Gilenya (Fingolimod). Apparently, when patients came off the pills, they soon after suffered huge relapses, which steroids could not even stop. It opens one up to opportunistic infections, including PML, a deadly brain infection. So if you start it and want to get off the zombie train, you are in for a really rough ride.

And yet when patients bring up HSCT to their doctors, they are warned. Chemo! That's risky and overkill. And oh wait. It works! Where all the pills and shots can do is cut down on relapses, none can completely stop progression. Which HSCT does for 80-90% of patients.

So my next project is to research all the drugs used in HSCT and their long term consequences. Most clinics do use steroids in certain  phases. Though Singapore does not do this. I don't know what the benefit of doing/not doing it is, or if there are alternatives. I believe it is given with  the  chemo to help minimizes reactions and not in large enough doses as to put one at risk.   So maybe its ok. But I want to understand it all, so that will be my project for the next while as I wait to hear from Florence.

That and the myriad of random tasks I'll be handed by regular family life. Fiona got hold of and ink pen and decorated a couch cushion. When I whisked the cover off to give it an acetone bath, Fiona crabbed the unprotected cushion and ripped the cover, sending feathers floating about the room. (Again with the birds!) So then I had to hunt down a needle to fix it. I haven't done much sewing of late, its  best for everyone that way. I finally found one needle that had rust spots all over it. Yeah!  Feathers AND Tetanus. Then the thread kept breaking, though it was advertised as silky and strong. Whatever. I gave up and threw the cushion on the big pile of other unfinished projects. I'll probably take another stab at it tomorrow. Get it? Stab?

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