Søren Williams

Oh wow, man. Sorry to hear. Stopping to say a prayer right now.

Thanks, everyone. It really means a lot to me. Something our marriage therapist told us just before we entered the hospital for transplant was that we might be surprised at who shows up to support us, and we might be surprised at who *doesn't* show up to support us. I would say that's been largely true, though probably more for me than for my wife.

I'm at this very moment lying on the "padded" bench in my son's room on the BMT ward. He's asleep on my right arm, and I'm typing into my phone with my left thumb while holding my phone with my left hand. Ha! Something I'm quite used to at this point. He hasn't been digging his hospital crib the past few nights, so he's been joining me on the bench. It is not possible for me to sleep under these conditions. So my wife and I trade off every other night or two. I get a "regular" night's sleep 3-4 days each week, with no sleep at all on the other days.

I'm so glad I found this community when I did. It's been a fabulous distraction. You just can't live in medical trauma 24/7 for more than a couple weeks at a time. It will drive you insane. Being here has spurred me on to sell off some old gear I could do without, and pick up a few new pieces to inspire me to record in my (very small amount of) downtime away from the hospital. Sometimes it takes new gear to nudge us forward into new artistic ideas, I've found. I remember reading an interview with Tchad Blake one time where he said he and Mitchell Froom would buy some piece of gear--even if it was just a new guitar pedal--right before starting a new project, just to see if it inspired any new ideas. I'm hoping my recent (and upcoming) purchases will encourage me to do some creative work.

We're at Duke Hospital, and it just so happens that Durham is our hometown, so when I'm not spending the night at the hospital, I'm at home. Hopefully soon I'll have enough of a break and enough energy to plug in these 013s.

the other mark williams, I’m so sorry to hear this. I’ll be saying prayers for your family over here too. 

You are in my thoughts


Wiz

Mark so sorry to hear about your son, our thoughts and prayers are with you and your family, living in the hospital sucks, been there done that but I can only imagine how much harder it is when it’s your small child. Sounds like you have a tough little fighter there.
Anything I can do PM me.

Now as the former long term patient, dad you and mom as hard as it is need to each take some me time and some us time because that little guy needs you guys to survive this as well. I know it’s hard but the 19 years I have spent counseling fellow burn victims and their loved ones has thought me families of kids in the hospital just don’t take care of themselves.
Now give that little guy a hug from all of us.

First of all, I just want to say again how much I appreciate all the kind words and positive energy being sent our way from folks here on the forum. Seriously, it means a lot to me.

Secondly, I'm sorry to have inadvertently hijacked the thread. That was absolutely not my intention. I wonder if it makes sense to split this off into the "Off Topic" section of the site?

And lastly, just by way of update: We're expecting to hear sometime late Friday afternoon whether my son's (his name is Søren, btw) transplant has failed or not. A couple of weeks ago, it appeared his engraftment had failed. He then developed a really dangerous lung infection, and he has no immune system to fight with, because all the chemo wiped out his immune system weeks ago. Anyway, the doctors tried a couple of things to salvage the transplant, and we may find out on Friday whether or not they succeeded. If test results still show a failed engraftment, we will be back to square one and have to attempt a second transplant in the next couple of weeks. Roller coaster, dudes.

My wife and I have been able to care for ourselves and our marriage pretty well so far. We have a great marriage therapist that we meet with just about every week. But this kind of storm is huge, and can be really debilitating to even the strongest of relationships, so we try to keep our eyes and hearts open as best we can.

Thanks again, everyone. Johnkenn  , I defer to your wisdom as to whether it's most appropriate to split this off into a different thread in the "Off Topic" section...

Thanks again, everyone!

Hey - think I will move this to off topic because honestly, it deserves its own thread.

We don't know each other, but I'm sending positive thoughts to you and your fam. I've got two little girls (1 and 5), and I know I would be a mess. Something like this would show you real fast about what the important things in life are...and gear ain't one of them (though I'm guilty as anyone getting caught up in whether this compressor/preamp/mic is better than the next).

I hope the news is good and recovery is swift for the little one.

I just saw this. Love and prayers for your child and family.

Sorry to have been absent for a couple days there, everyone. Pretty difficult time the past few days, and not enough emotional space (nor time on the clock) to write. I'll absolutely continue to post updates here, but I also wanted to let you guys know about [ the Facebook page we have going for my son. ] We update that page a few times each week with news and photos and an occasional video.

By way of disclaimer, i want to note that I hate Facebook, and I had never joined it until our son got so sick. Joining it was a way to keep friends and family informed on Søren's progress, as well as a way to connect with parents in similar situations with their children. At least at this one thing, it has excelled.

I haven't written a post for today on the FB page, so I'll tell you all first:
Monday was a rough day. Søren had another CT scan (this was like his 5th CT at the ripe old age of 20 months), and he also had a bone marrow aspiration test where they pierce the hip bone (even the docs use the incredibly scientific-sounding term "hip bone") and remove some blood and/or actual marrow (jellylike substance). 

We got the final read of the CT late Monday evening. It didn't look particularly good, though it didn't look completely catastrophic, either. There are some additional lesions in new parts of his lungs. This urges at least one of the doctors on the BMT team (there are 5 BMT docs) to argue for beginning a new course of chemotherapy ASAP, like by the end of this week. This is problematic, because not all of the MDs on the BMT team agree about what the chemo course should be. In some patients with primary immunodeficiency (like SCHID, for instance), the transplant is much more straightforward. SCHID kids don't have *any* immune system, so often no chemo is needed. Søren, on the other hand, has CGD, and it's really, really complicated. He has one of the worst cases they've seen in a long, long time. He has a totally normal immune system (for a 20 mo) when fighting viruses and most bacteria. But there are a few bacteria and a handful of fungi that would kill him without radical intervention. He has one of those bacteria in his spleen and he has one of the fungi in his lungs. Today's CT confirmed that the lung infection is likely spreading. We are still doing several courses of treatments which we think will help. But the gathering consensus is that we need Søren to have an engrafted, fully functioning immune system as quickly as possible. Which likely means doing a new round of chemotherapy beginning late this week, and going all the way though next week, followed by a second bone marrow transplant. This whole process is actually much scarier on the second transplant than it was on the first.

If you are someone who prays, or someone who sends positive energy through the ether, or someone who mindfully brings kindness into your small part of the world, or someone who likes to take an electric guitar outdoors and turn the damn thing up waaaay too loud, we would be grateful and honored to receive such selfless gifts.

Thank you, everyone.

-Mark

Mark won’t say it but I will, their is something most of us can do (well I can’t but more about that later) get tested and if you are a match donate your marrow! There are thousands awaiting a transplant, thousands of fathers like Mark praying somebody out there will match their kids of all ages and save their lives. This is a simple way to be hero!
So why can’t I ? I donate well it’s a quadruple whammy.
First; in the course of treatment for the burns I received multiple coverings of donated skin to be used unroll areas could be covered with my own skin in permanent graphs. It has been said that I might be the recipient of the most transplanted tissue or organs but nobody keeps track of this stuff. So I am considered a transplant recipient and am considered a no go for donation.
Second; At some point every major organ other than heart and lungs shut down another no go.
Third ; Grafted skin is missing a layer, the skin is considered the largest organ in the immune system and I’m considered immuno compromised.
Fourth : I have pancreatitis an auto immune disease another no go.

Other wise I would be registered but nobody would want mine.
So pray send good thoughts and be a hero!