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Post by drsax on Jun 22, 2018 23:55:21 GMT -6
So glad to hear the updated news. Continued thoughts and prayers for Soren, and for you and your family.
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Post by jcoutu1 on Jun 23, 2018 6:46:04 GMT -6
Great news. Hoping for more positive news soon.
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Post by the other mark williams on Jun 27, 2018 2:41:21 GMT -6
Hi folks, I'll give another update soon, but the short version is that Søren feels like shit these days. But his numbers are fairly encouraging. It appears the donor cells are still trying to do their thing and multiply. But we had to do 3 surgeries and 2 procedures last week following the chimerism test, so he's still recovering from those. IN THE MEANTIME... A few weeks ago, I came home from the hospital one night, and though I hadn't felt much like playing guitar in many weeks, I decided to put up a microphone and lay down a scratch guitar track for a cover of Paul Simon's "Kathy's Song." You know how these things go: my quick scratch guitar turned into an all-nighter of multiple guitar tracks, vocals, keys, etc. I wept most of the way through singing the lead vocal. I had just sold off some nice mics and pres, so I used the cheapest stuff at my disposal that night: a Warm WA-12 and an A-T 3035. So that's all I used on this track. Oh, and a Cascade Vin-Jet on guitar cab. I hope you guys like it: Kathy's Song - the other mark williams |
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Post by kcatthedog on Jun 27, 2018 4:24:28 GMT -6
Thinking of you all !
Lovely, emotive yet understated version of arguably one of Paul's most lovely songs: thank you for sharing that!
One day at a time !
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Post by M57 on Jun 27, 2018 5:06:58 GMT -6
One of the first songs I learned to sing and play! Beautiful arrangement and a lovely performance and recording.
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Post by Vincent R. on Jun 27, 2018 7:11:43 GMT -6
Hey the other mark williams, sort of just staying silent, following along, and sending prayers. Just wanted to thank you for the simple reminder that a great performance far outweighs the gear used to record it. I sometimes forget that the first commercial material I ever recorded for television as a studio vocalist was with an AT3525 into a DBX 286 into a Digi 002. Thank you for sharing that beautifully performed track. |
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Post by iamasound on Jun 27, 2018 8:10:28 GMT -6
Sending positive vibe.
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Post by joseph on Jun 27, 2018 18:09:42 GMT -6
Great cover!
My son is not much older than yours and also has a rare genetic disorder caused by a random deletion. For a while we thought it was degenerative, so I know the fear.
The important thing is to be there for him and your wife, and not blame yourselves or feel there is anything fundamentally wrong with your son, who is a complete person just as much as any typical person, and just as miraculous. We evolve as a species because our DNA is variable; each of us includes countless mutations, deletions, and other genetic changes.
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Post by kcatthedog on Jul 6, 2018 5:34:22 GMT -6
Heart warming and encouraging videos on fb yesterday of the little guy outside breathing fresh air unassisted!
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Post by Johnkenn on Jul 13, 2018 13:03:27 GMT -6
Great news
From Katrina:
Hello everyone,
A quick update. Søren is continuing to make progress. Each day he's getting a bit stronger and more vibrant. Our team is starting to discuss going home in the coming weeks (!!). I think Mark and I are cautious to vocalize this…we’re keenly aware of how delicate Søren's health still is. But needless to say, this is a big step forward in the right direction and for that we are very grateful.
In thinking about going home, we're realizing just how thankful we are to be surrounded by such an amazing team of nurses, and in many ways they have become like family to us. We love these brilliant, compassionate and beautiful people! They have made the most terrifying days immeasurably better and cared for us in countless ways.
I am continually impressed by their dedication, compassion and skill. Their warmth and love has carried us through the last 5 months and helped us navigate the darkest of days. They have been by our side through some deeply intimate experiences and the work they do is really, really hard. I have so much respect and admiration for the *heart* they put into their work.
When I see Søren making progress and thriving, I can’t help but think of our wonderful nurses and the ways their dedication has helped us get to this point.
5200 Nurses are amazing. We love you!
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Post by the other mark williams on Jul 22, 2018 18:23:56 GMT -6
Hi everyone,
I'm pasting below my most current update, which I posted to FB a few minutes ago. As always, I can't thank you all enough for the kind words of support. I have felt really embraced by this forum over the past few months, and it has meant the world to me.
From Mark:
Hope In A Box of Diapers
Hi friends,
Lots to catch you all up on…
First off, Søren has now been home to visit on six occasions. This is magnificent. We typically get afternoon “passes” that last around four hours. During these “passes” we are free to take Søren “off campus.” In our case, as we live so close to Duke Hospital, it means we can actually take him HOME. He can eat food that we prepare in our kitchen. He can wander the hallway that connects our living room with the bedrooms in our little ranch house that we bought two weeks after he was born. He can even walk on our patio in the backyard (with shoes and socks). He still has to wear a mask whenever he’s outdoors for at least nine months (possibly up to a year), but the fact that we’re even thinking about the next month, not to mention the next year, is absolutely astounding. Six weeks ago, we did not even know if Søren had engrafted. We didn’t know whether the second transplant would “take.” We didn’t know if he would survive.
Personally, I was afraid to hope. I do not say that with shame. I say it with the only strength (feeble though it may be) that I possessed. Our marriage therapist spoke to us two weeks ago about Brené Brown’s insistence on not allowing life to rob her of joy or gratitude: that no matter how dire the circumstance, she clung to joy. Most certainly I am not as strong as Brené Brown. I remember a gospel song by Larnelle Harris from the 80s called “I Choose Joy.” Most certainly I am not as strong as Larnelle Harris. Rich Mullins, on the other hand, had a song in the late 90s called “We Are Not As Strong As We Think We Are.” *That* song I can relate to.
Rich had another song called “Hard To Get” that my friend Elizabeth Efird reminded me of a few months ago. Listening to it has provided me with the most urgent sense of emotional breakthrough I have had over the past six months. In my opinion, as much as I still respect Rich’s music, quite a few of his songs have not held up particularly well over time. They still provide me with comfort and intimacy because of the nostalgic history I have with them, but a lot of them don’t feel as pointedly insightful to me anymore. But “Hard To Get” still knocks me out. Read what Rich says here about his own experience of Jesus. He would have written this during the days he converted from evangelicalism to Catholicism:
****
You who live in heaven
Hear the prayers of those of us who live on earth
Who are afraid of being left by those we love
And who get hardened by the hurt
Do you remember when you lived down here where we all scrape
To find the faith to ask for daily bread
Did you forget about us after you had flown away
Well I memorized every word you said
Still I’m so scared I’m holding my breath
While you’re up there just playing hard to get
****
Now *that* is an idea I can relate to. *That* feels like authentic humanity and spirituality to me. Regardless of one’s religious beliefs or lack thereof, I think there is something overwhelmingly *human* about Rich’s spiritual exploration in that song. It addresses the feeling of abandonment by a figure who ought not abandon us. It’s not terribly different from a Jungian exploration of an individual’s developmental process. And maybe this makes me weird, but it doesn’t feel like hopelessness to me. It just feels honest. It actually makes me feel less alone when I listen, much like Emmylou Harris’s “Red Dirt Girl” or Gillian Welch’s “Orphan Girl,” because just knowing someone else has felt the same feelings of loneliness and despair I have felt makes me feel more connected to a community of fellow travelers. So oddly, listening to “sad” music often makes me feel better. (Perhaps this is why I love Radiohead so much.) I realize I am in the societal minority here.
And so at long last, I have begun to tremulously hope again. Thursday night, Katrina and I bought a box of diapers. Quite a mundane act for the vast majority of parents with young children. Yet, for us at least, it was a profound, gut-wrenching, tear-inducing experience. I remember the last time I bought a box of diapers. I remember wondering at the time if it would be the last box of diapers I would ever buy. I am relieved beyond measure to say we are back in the diaper-buying business.
Our doctors have now been using the “D” word for several days: “Discharge.” We are likely on track to discharge **this week**. That feels insane to me. And it feels insane that it feels insane, because we’ve been on the Pediatric BMT floor for five solid months now. I think Søren is ready. The first two or three visits he made back home, he grew tired after a couple hours and wanted to go back “home” as he understands it: Unit 5200 at Duke. Over the past couple visits, however, he’s beginning to reattach to our home. He’s been able to take a nap at home three times now, which is a big step, and is indicative that he feels safe enough to trust going unconscious.
I’ll write a bit more in a few days about what the discharge process feels like for me as a parent, as well as what it feels like for me as a member of a small club: people of 5200. There is a real community of people there: patients, parents, nurses, doctors, former patients and their families, friends of former patients, etc. There are people who bring meals for caregivers several times each month. There are volunteers who are present most afternoons to help in any way they might be needed. There are social workers and chaplains. There is Barbara, who brings Søren his meals every day, and Steve, who collects the sharps container every morning. This is a community of people who function as a unit, and they have become our family over the past five months. And as happy as we are to be heading home soon, we are sad to leave our family. They have been such an irreplaceable part of our support system that to leave them leaves me feeling exposed. With the increase of freedom comes new responsibilities: We will have a whole new set of hats to wear, all of us.
But what a relief to be wearing a hat.
More soon,
—Mark
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Post by kcatthedog on Jul 23, 2018 7:08:13 GMT -6
Wonderful news, if abandonment is a sort of emotional , possible spiritual vacuum, it seems many, initially strangers, stepped up to help you all. Perhaps, we are never as alone, as we sometimes feel ?
I have 3 children and have had a couple of serious at the hospital accidents but never a major illness, so happy for you and your family!
One day at a time !
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Post by ragan on Jul 23, 2018 11:48:25 GMT -6
Hi everyone, I'm pasting below my most current update, which I posted to FB a few minutes ago. As always, I can't thank you all enough for the kind words of support. I have felt really embraced by this forum over the past few months, and it has meant the world to me. From Mark: Hope In A Box of Diapers Hi friends, Lots to catch you all up on… First off, Søren has now been home to visit on six occasions. This is magnificent. We typically get afternoon “passes” that last around four hours. During these “passes” we are free to take Søren “off campus.” In our case, as we live so close to Duke Hospital, it means we can actually take him HOME. He can eat food that we prepare in our kitchen. He can wander the hallway that connects our living room with the bedrooms in our little ranch house that we bought two weeks after he was born. He can even walk on our patio in the backyard (with shoes and socks). He still has to wear a mask whenever he’s outdoors for at least nine months (possibly up to a year), but the fact that we’re even thinking about the next month, not to mention the next year, is absolutely astounding. Six weeks ago, we did not even know if Søren had engrafted. We didn’t know whether the second transplant would “take.” We didn’t know if he would survive. Personally, I was afraid to hope. I do not say that with shame. I say it with the only strength (feeble though it may be) that I possessed. Our marriage therapist spoke to us two weeks ago about Brené Brown’s insistence on not allowing life to rob her of joy or gratitude: that no matter how dire the circumstance, she clung to joy. Most certainly I am not as strong as Brené Brown. I remember a gospel song by Larnelle Harris from the 80s called “I Choose Joy.” Most certainly I am not as strong as Larnelle Harris. Rich Mullins, on the other hand, had a song in the late 90s called “We Are Not As Strong As We Think We Are.” *That* song I can relate to. Rich had another song called “Hard To Get” that my friend Elizabeth Efird reminded me of a few months ago. Listening to it has provided me with the most urgent sense of emotional breakthrough I have had over the past six months. In my opinion, as much as I still respect Rich’s music, quite a few of his songs have not held up particularly well over time. They still provide me with comfort and intimacy because of the nostalgic history I have with them, but a lot of them don’t feel as pointedly insightful to me anymore. But “Hard To Get” still knocks me out. Read what Rich says here about his own experience of Jesus. He would have written this during the days he converted from evangelicalism to Catholicism: **** You who live in heaven Hear the prayers of those of us who live on earth Who are afraid of being left by those we love And who get hardened by the hurt Do you remember when you lived down here where we all scrape To find the faith to ask for daily bread Did you forget about us after you had flown away Well I memorized every word you said Still I’m so scared I’m holding my breath While you’re up there just playing hard to get **** Now *that* is an idea I can relate to. *That* feels like authentic humanity and spirituality to me. Regardless of one’s religious beliefs or lack thereof, I think there is something overwhelmingly *human* about Rich’s spiritual exploration in that song. It addresses the feeling of abandonment by a figure who ought not abandon us. It’s not terribly different from a Jungian exploration of an individual’s developmental process. And maybe this makes me weird, but it doesn’t feel like hopelessness to me. It just feels honest. It actually makes me feel less alone when I listen, much like Emmylou Harris’s “Red Dirt Girl” or Gillian Welch’s “Orphan Girl,” because just knowing someone else has felt the same feelings of loneliness and despair I have felt makes me feel more connected to a community of fellow travelers. So oddly, listening to “sad” music often makes me feel better. (Perhaps this is why I love Radiohead so much.) I realize I am in the societal minority here. And so at long last, I have begun to tremulously hope again. Thursday night, Katrina and I bought a box of diapers. Quite a mundane act for the vast majority of parents with young children. Yet, for us at least, it was a profound, gut-wrenching, tear-inducing experience. I remember the last time I bought a box of diapers. I remember wondering at the time if it would be the last box of diapers I would ever buy. I am relieved beyond measure to say we are back in the diaper-buying business. Our doctors have now been using the “D” word for several days: “Discharge.” We are likely on track to discharge **this week**. That feels insane to me. And it feels insane that it feels insane, because we’ve been on the Pediatric BMT floor for five solid months now. I think Søren is ready. The first two or three visits he made back home, he grew tired after a couple hours and wanted to go back “home” as he understands it: Unit 5200 at Duke. Over the past couple visits, however, he’s beginning to reattach to our home. He’s been able to take a nap at home three times now, which is a big step, and is indicative that he feels safe enough to trust going unconscious. I’ll write a bit more in a few days about what the discharge process feels like for me as a parent, as well as what it feels like for me as a member of a small club: people of 5200. There is a real community of people there: patients, parents, nurses, doctors, former patients and their families, friends of former patients, etc. There are people who bring meals for caregivers several times each month. There are volunteers who are present most afternoons to help in any way they might be needed. There are social workers and chaplains. There is Barbara, who brings Søren his meals every day, and Steve, who collects the sharps container every morning. This is a community of people who function as a unit, and they have become our family over the past five months. And as happy as we are to be heading home soon, we are sad to leave our family. They have been such an irreplaceable part of our support system that to leave them leaves me feeling exposed. With the increase of freedom comes new responsibilities: We will have a whole new set of hats to wear, all of us. But what a relief to be wearing a hat. More soon, —Mark Beautifully poignant. Thanks for sharing, Mark. Blessings on little Søren and you all. |
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Post by the other mark williams on Jul 28, 2018 3:36:15 GMT -6
Here's the latest...
From Mark:
A (Hopefully Minor) Setback.
Hi friends,
I just wanted to let you all know the latest news from our corner of the multiverse. We did *not* make it home this week, after all. Søren developed a line infection a couple days ago, and he needs to be treated for it in-patient. There’s no way to know how long the course of treatment will need to be, but it’s probably a couple weeks if everything goes well. Line infections can be quite serious, but the team seems to think this was caught very early, and they got a strong antibiotic in the line right away (like, within minutes).
While it’s a bummer to not have him home yet, we’re grateful the infection was found while he’s still in-patient. If this had been discovered while he was at home, we would’ve had to turn around and re-admit him.
I don’t have a ton of other news right now. We’re just trying to take this day—and every other day—in stride.
Thanks as always for your kindness to us, and we’ll be in touch soon.
—Mark
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Post by Johnkenn on Jul 28, 2018 22:26:14 GMT -6
God bless you guys...
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Post by chessparov on Jul 29, 2018 12:02:17 GMT -6
In my prayers too...
Chris
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Post by johneppstein on Jul 29, 2018 14:40:55 GMT -6
I have not posted much in this thread because frankly I don't really know what to say for the most part. I am glad to hear that Soren has made generally good progress and that this recent setback was caught quickly and will hopefully be over soon.
Best wishes for continued progress.
Sending good vibes from California!
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Post by the other mark williams on Jul 29, 2018 20:20:06 GMT -6
Thanks, johneppstein! Our antennae are receiving your vibes, my man! Much appreciated. |
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Post by Mister Chase on Aug 1, 2018 17:47:34 GMT -6
Bless you and your family. I am very sorry for the trouble life has thrown Søren's way. Thinking good thoughts and prayers for you all.
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Post by geoff738 on Aug 2, 2018 19:07:54 GMT -6
Sorry to hear you’ve hit a bit of a bump in the road but I m hoping that Søren can recover from this quickly and that you can all be together at home soon.
All my best to Søren, and Mark and Katrina. It sounds like you have been able to keep positive spirits through this and have been there for each other.
Im hoping all the best for all of you.
Geoff
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Post by Mister Chase on Aug 2, 2018 19:33:13 GMT -6
Hi folks, I'll give another update soon, but the short version is that Søren feels like shit these days. But his numbers are fairly encouraging. It appears the donor cells are still trying to do their thing and multiply. But we had to do 3 surgeries and 2 procedures last week following the chimerism test, so he's still recovering from those. IN THE MEANTIME... A few weeks ago, I came home from the hospital one night, and though I hadn't felt much like playing guitar in many weeks, I decided to put up a microphone and lay down a scratch guitar track for a cover of Paul Simon's "Kathy's Song." You know how these things go: my quick scratch guitar turned into an all-nighter of multiple guitar tracks, vocals, keys, etc. I wept most of the way through singing the lead vocal. I had just sold off some nice mics and pres, so I used the cheapest stuff at my disposal that night: a Warm WA-12 and an A-T 3035. So that's all I used on this track. Oh, and a Cascade Vin-Jet on guitar cab. I hope you guys like it: Kathy's Song - the other mark williamsJust wanted to say I loved that song and recording. |
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Post by Calvin on Aug 4, 2018 17:09:40 GMT -6
This whole thread is so gut-wrenching, but also so beautiful. Continued prayers for the little guy and his family.
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Post by b1 on Aug 24, 2018 11:06:36 GMT -6
I haven't been here for a while, the other mark williams, but I definitely haven't forgotten about you and your family. Just to let you know, I'm praying for you all 2+ times a day. Love, peace and healing to you and yours! |
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Post by Johnkenn on Nov 1, 2018 21:19:01 GMT -6
Hey the other mark williams give us an update on Soren. There is nothing I would love more than to let this thread slide into the ether because he has beat this! I follow you guys on FB and saw some Halloween pics. He looks really great! |
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Post by the other mark williams on Nov 2, 2018 22:47:10 GMT -6
Hey the other mark williams give us an update on Soren. There is nothing I would love more than to let this thread slide into the ether because he has beat this! I follow you guys on FB and saw some Halloween pics. He looks really great! I’ve needed to update this for quite awhile. I’ll hopefully have a chance this weekend to give a full update. Thanks for the reminder, JK. Ultra-quick version: he’s doing really well overall. A few bumps in the road, but the overall picture is encouraging. We always have our bags packed by the front door in case we need them for a sudden trip to the hospital, and we’ve had to use those bags a couple times, but he’s been improving week-over-week for the past couple months. Again, bigger update to come in the next couple days... |
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