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Post by drsax on Feb 21, 2019 10:44:49 GMT -6
So sorry to hear this this Mark. Continued prayers and well wishes from Colorado for Søren and for you and your wife.
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Post by kcatthedog on Feb 21, 2019 15:55:35 GMT -6
Obviously, this is tough on everyone but Søren knows the love you have for him: what more can any of us actually give our children. You are all in our prayers!
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Post by the other mark williams on Feb 26, 2019 0:37:09 GMT -6
This is from Katrina via the FB page today:
Hi everyone,
I want to start with a passage from Anne Lamott that is inspiring to me today:
“Many years ago, I wrote that gratitude, not understanding, is the key to joy and equanimity. I think this holds up. Understanding has not proven to be all that useful very often. But gratitude, thankfulness, that sense of having been helped, saved, seen, enriched by life, a good person, a lucky break, is magic.
When we feel it, or even walk with it for part of every day, gratitude is a magnetic energy that draws people to us, because it is the most wonderful and attractive of emotions. When you are with someone who has developed the habit of gratitude, you SO want what they have. They are not grasping for more. They are savoring, shaking their heads slightly with the most quiet wonder.
Gratitude contains a heightened and amazed realization of how much goodness is marbled into our strange and sometimes hard, annoying lives.
This catches us by surprise, as if we are children, and a sudden breeze is playing with our spirits, as if with paper planes, lifting us, restoring our sense of buoyancy, where before there was the opposite — the worry, the trudge, endless calculations and scheming, numbness.
Gratitude tugs on our sleeves and says, ‘Wake up!’ Look around at the kindness that surrounds us, the love we are being shown, the hope that now makes sense.”
—————
Last year at this time, Søren was starting chemotherapy. A very difficult time for us. The fear and worry were overwhelming, yet we were so hopeful.
I feel weathered by the storms we’ve endured this year.
To watch my child in pain—for quite some time—has changed me in many ways. Ways I’m still processing. The suffering has rearranged things within me and also opened up parts of my heart.
If I were to put a title to the last year, I’d again use Anne Lamott’s words of “Help, Thanks, and Wow”.
The biggest transformation within myself is that sense of "wow" or wonder that has been awakened within me. I'm more attuned to all the goodness, all the love, and all the beauty surrounding me.
I’ve said this before: Søren continues to be my greatest teacher. Despite the trials he’s faced, he continues to see the beauty and look for the light and goodness in people.
We still have a ways to go and struggles ahead, but I know for now that this day is filled with love and beauty, and for that I am very grateful.
love,
katrina
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Post by keymod on Feb 26, 2019 4:13:58 GMT -6
Gratitude has been the topic of several church sermons as of late, and I've been consciously trying to put it more into practice. It has made a difference. I am still praying you peace & blessings, and rest.
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Post by geoff738 on Mar 21, 2019 15:18:16 GMT -6
Mark,
Seeing you around here a bit more lately has me hoping Søren is making progress and you and Katrina are able to get a bit of respite from the stress you’ve been under.
Wishing all the best to you and your family.
Geoff
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Post by the other mark williams on Mar 22, 2019 0:37:35 GMT -6
Mark, Seeing you around here a bit more lately has me hoping Søren is making progress and you and Katrina are able to get a bit of respite from the stress you’ve been under. Wishing all the best to you and your family. Geoff Thanks so much, Geoff. Unfortunately, we’ve been in the middle of a shitstorm with Søren’s health the last 3 weeks or so. We were re-admitted to the hospital 2 weeks ago, and Søren’s had 2 or 3 surgeries since then. I honestly can’t even remember now if it’s been 2 or 3. Just an insane couple of weeks. About 9 days ago, I felt the old despair I’d felt after his first transplant failed. Things were suddenly not looking good at all. Basically, they unexpectedly found a nodule in his right bronchus when doing a bronchoscapy. That nodule is still not entirely identified. There is a nonzero chance that it could be a malignant lymphoma, which can sometimes occur following a transplant. It’s looking more and more like benign inflammatory tissue with a citrobacter bacterial infection in his lungs and surrounding lymph nodes, but lymphoma can’t be completely ruled out yet. It’s been a shitty couple weeks. In Søren’s case, quite literally. He’s on some strong IV antibiotics, and he has diarrhea about once an hour. He’s lying right next to me in the hospital bed as I type this. He’s sleeping in a crazy position that I would find insanely uncomfortable, but when I tried to move him a few minutes ago, he resisted. There must be something he likes about having his neck jacked up at a weird angle. And perhaps of interest to the board here, he has insisted on listening to two pieces of music over and over and over and over and over and over and over the past three weeks: “Everything Now” by Arcade Fire and “You Can Call Me Al” by Paul Simon. He really likes watching the Paul Simon video with Chevy Chase. |
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Post by stormymondays on Mar 22, 2019 1:12:54 GMT -6
It’s hard to find words but I want to send you my support. Keep strong. I hope you’re just around the corner to the light of day.
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Post by ragan on Mar 22, 2019 1:20:08 GMT -6
Mark, Seeing you around here a bit more lately has me hoping Søren is making progress and you and Katrina are able to get a bit of respite from the stress you’ve been under. Wishing all the best to you and your family. Geoff Thanks so much, Geoff. Unfortunately, we’ve been in the middle of a shitstorm with Søren’s health the last 3 weeks or so. We were re-admitted to the hospital 2 weeks ago, and Søren’s had 2 or 3 surgeries since then. I honestly can’t even remember now if it’s been 2 or 3. Just an insane couple of weeks. About 9 days ago, I felt the old despair I’d felt after his first transplant failed. Things were suddenly not looking good at all. Basically, they unexpectedly found a nodule in his right bronchus when doing a bronchoscapy. That nodule is still not entirely identified. There is a nonzero chance that it could be a malignant lymphoma, which can sometimes occur following a transplant. It’s looking more and more like benign inflammatory tissue with a citrobacter bacterial infection in his lungs and surrounding lymph nodes, but lymphoma can’t be completely ruled out yet. It’s been a shitty couple weeks. In Søren’s case, quite literally. He’s on some strong IV antibiotics, and he has diarrhea about once an hour. He’s lying right next to me in the hospital bed as I type this. He’s sleeping in a crazy position that I would find insanely uncomfortable, but when I tried to move him a few minutes ago, he resisted. There must be something he likes about having his neck jacked up at a weird angle. And perhaps of interest to the board here, he has insisted on listening to two pieces of music over and over and over and over and over and over and over the past three weeks: “Everything Now” by Arcade Fire and “You Can Call Me Al” by Paul Simon. He really likes watching the Paul Simon video with Chevy Chase. So sorry to hear this, Mark. Prayers for you all, especially little Søren. |
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Post by keymod on Mar 22, 2019 3:01:01 GMT -6
It’s hard to find words but I want to send you my support. Keep strong. I hope you’re just around the corner to the light of day. Same here |
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Post by drsax on Mar 22, 2019 9:31:47 GMT -6
Mark, Seeing you around here a bit more lately has me hoping Søren is making progress and you and Katrina are able to get a bit of respite from the stress you’ve been under. Wishing all the best to you and your family. Geoff Thanks so much, Geoff. Unfortunately, we’ve been in the middle of a shitstorm with Søren’s health the last 3 weeks or so. We were re-admitted to the hospital 2 weeks ago, and Søren’s had 2 or 3 surgeries since then. I honestly can’t even remember now if it’s been 2 or 3. Just an insane couple of weeks. About 9 days ago, I felt the old despair I’d felt after his first transplant failed. Things were suddenly not looking good at all. Basically, they unexpectedly found a nodule in his right bronchus when doing a bronchoscapy. That nodule is still not entirely identified. There is a nonzero chance that it could be a malignant lymphoma, which can sometimes occur following a transplant. It’s looking more and more like benign inflammatory tissue with a citrobacter bacterial infection in his lungs and surrounding lymph nodes, but lymphoma can’t be completely ruled out yet. It’s been a shitty couple weeks. In Søren’s case, quite literally. He’s on some strong IV antibiotics, and he has diarrhea about once an hour. He’s lying right next to me in the hospital bed as I type this. He’s sleeping in a crazy position that I would find insanely uncomfortable, but when I tried to move him a few minutes ago, he resisted. There must be something he likes about having his neck jacked up at a weird angle. And perhaps of interest to the board here, he has insisted on listening to two pieces of music over and over and over and over and over and over and over the past three weeks: “Everything Now” by Arcade Fire and “You Can Call Me Al” by Paul Simon. He really likes watching the Paul Simon video with Chevy Chase. This is such tough stuff. Continued thoughts and prayers as little Soren and you two navigate through all of this. Hang in there and keep pressing forward one day at a time. Sending big love to you guys |
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Post by the other mark williams on Mar 22, 2019 10:02:43 GMT -6
Thanks, drsax. I really appreciate it. |
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Post by geoff738 on Mar 22, 2019 12:00:13 GMT -6
Man, sorry to hear Søren is still going through such a hard time. And that of course means you don’t get a break. And on top of it you have to watch Chevy CHase mugging his way through that video over and over. Ugh. But if it brings Søren some joy?
Hoping better days are just around the corner.
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Post by Johnkenn on Apr 17, 2019 18:49:39 GMT -6
This was 18 days ago
Good news! The Chest CT shows some improvement in both lung infections, so we're going HOME.
(We'll post a more detailed update soon, but wanted to THANK YOU for all your prayers and loving thoughts.)
xo
Katrina and Mark
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Post by the other mark williams on Apr 18, 2019 0:26:39 GMT -6
This was 18 days ago Good news! The Chest CT shows some improvement in both lung infections, so we're going HOME. (We'll post a more detailed update soon, but wanted to THANK YOU for all your prayers and loving thoughts.) xo Katrina and Mark Thanks for posting that, Johnkenn . I keep forgetting to update you guys. In the spirit of that... Not to rain on the good news parade that John just provided, because it really is good news in terms of Søren's healing, but we've also gotten two pieces of bad news in the past 2 weeks, and it's just hard to know what to do with them. First is that more lab results came back from a biopsy 28 days ago, and Søren has a colony of slow-growing mycobacteria somewhere in his respiratory tract. His infectious disease doctors want to treat with two rather toxic antibiotics for possibly up to a year. Soren's transplant doctors, on the other hand, don't want to treat at all, at least not at this point. They want to see if his immune system can recover to the point of fighting the infection on its own. I trust his transplant doctors, or at least I trust them as much as a parent can trust anyone in this kind of circumstance, which is to say that my anxiety always runs immediately beneath the surface. It may well be that they end up treating with aggressive antibiotics, but his transplant doctors want to wait a bit first. The second bit of bad news is hard to measure for me right now at 2:25am. I'll hopefully know more in 10 hours or so, when we meet with one of Soren's doctors. Basically, last week they did an immune function test, and Soren's T cells are still essentially nonexistent. His thymus gland shows no activity. (The thymus gland is where T cells are made.) This is not looking great. Søren's thymus gland was almost certainly injured in his two rounds of chemotherapy, and we've been hoping it would heal and "reawaken". But so far, it hasn't. T cells are responsible for much of the adaptive immune system, which is what enables us to not get sick from common pathogens, and enables us to get well when we do get sick. We don't know how to take the news yet, beyond being disappointed, worried, and scared. Hopefully we'll know a little more by lunchtime on Thursday. Thanks for reading, guys. I appreciate all of you. |
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Post by kcatthedog on Apr 18, 2019 4:56:23 GMT -6
The dilemma's of parenting seriously sick kids are never easy, but your son is where he needs to be to get the best care and for and your wife to get the best advice. I have two recording friends with very ill children (You and Shane) and my two best life time pals: one has serious heart issues and the other had cancer come on very very quickly, personally, I think life a long lesson in humility. Here's hoping Søren's thymus is just taking an early easter weekend break: kid's these days you know ?  |
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Post by geoff738 on Apr 26, 2019 18:48:33 GMT -6
Mark,
I know the journey has been good news mixed with setbacks.
But hoping the recent good news continues. Go Søren!
And you and Katrina too!
Cheers,
Geoff
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Post by Johnkenn on May 14, 2019 8:54:31 GMT -6
Hey Mark - when you have a chance, give us a small update.
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Post by the other mark williams on May 14, 2019 11:39:37 GMT -6
Hey Mark - when you have a chance, give us a small update. Will do, John. Sorry I've been lax on this. I'll update more in the next day or so, but for now, I'll say that we have Søren's one-year studies coming up at the end of this month, which will determine the next immediate steps for treatment. |
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Post by kcatthedog on May 15, 2019 6:23:48 GMT -6
I read all your facebook posts and send positive energy your son's way every day. He seems a very sweet and stalwart little guy and you and your wife are being so strong: it can't be easy.
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Post by geoff738 on May 15, 2019 11:45:30 GMT -6
I just had a look at the Facebook page. I hadn’t checked in a while. The picture of you hugging Søren with his little Chuck Taylor’s is adorable. The film is beautiful too. Wishing you good news going forward.
Cheers,
Geoff
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Post by the other mark williams on Jun 11, 2019 21:22:36 GMT -6
Sorry again for the lack of updates, folks. I hope to have something to post later this week.
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Post by Johnkenn on Jun 11, 2019 22:02:31 GMT -6
In all honesty - I don’t get on FB very often - on purpose...but I’ve tried to narrow things down to people that I care about. When I do get on, that’s where I get updates from you and Shane’s family. Anyway, I am reminded about a lot of things from watching from twenty thousand feet. So many existential questions...and it immediately makes me talk to God about you and your families. I can’t imagine the struggle. So - I don’t know anything other to do than to pray for your children and for you. Maybe there’s something more tangible I can do...but know at least that much. Hopefully we will hear both are done with these diseases soon.
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Post by kcatthedog on Jun 13, 2019 3:38:51 GMT -6
As of yesterday they have a FB update that Soren has been doing better but I’ll let Mark give us the deets in his typically eloquent and impassioned way .
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Post by kcatthedog on Jun 28, 2019 13:11:51 GMT -6
BTW, they are posting on FB today that Soren is starting to have some more positive results, and that this change in of itself is very significantly showing heading him the the right direction. Great news for Mark and his fine family !
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Post by Johnkenn on Jun 28, 2019 15:09:56 GMT -6
Day +394
An update on our sweet Søren... this time with good news!
Søren's last Immune Reconstitution Panel showed that his bone marrow is starting to produce those good, healthy cells he needs! His T cells, B cells, CD4+ counts all showed significant improvement, and there is also evidence of Thymic activity (which is something we weren't seeing last time)- so this is all good news.
Yesterday, Søren had his first post-transplant VACCINES! This is a big milestone! The fact that he is now healthy enough to receive vaccines is something we don't take for granted. This will be long process but eventually he'll be able to play with other children, go on adventures, and start seeing more of the world.
Our next step is repeating a scan of his lungs in August. If his two lung infections have resolved, his central line can be removed and then we'll really be able to celebrate with the biggest dance party ever.
While day to day care for Søren is still very challenging, I'm feeling more hopeful than I have in a long time.
Below: Søren's "performace face"
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