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Post by the other mark williams on Aug 6, 2019 22:01:05 GMT -6
Ugh. I never seem to find enough time to write an update. So here's a really short one: We're back in the hospital yet again. Søren's blood pressure fell through the floor this afternoon, and his heart rate plummeted. Katrina got him to the hospital and a crisis response team jumped right on the situation. She said it was pretty terrifying.
He's feeling basically fine now. He's asleep next to me in the hospital bed with his leg draped up over my abdomen. They're giving two strong/broad antibiotics, steroids, and antifungals. Hopefully we'll know more in a couple days.
We've had an up-and-down kind of month, actually. We've been telling his docs that something wasn't quite right for a few weeks, but they couldn't find anything. Søren's primary transplant doc has wanted to do a full body PET scan for awhile, but insurance has been refusing to pay for it. Now that we're inpatient again, they might relent.
That's all I got for now. Yippee-ki-yay.
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Post by ragan on Aug 6, 2019 22:41:35 GMT -6
That “like” is more like an acknowledgment/fist of solidarity. I don’t “like” any of it.
Praying for you guys.
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Post by Johnkenn on Aug 7, 2019 8:18:20 GMT -6
Ugh. I never seem to find enough time to write an update. So here's a really short one: We're back in the hospital yet again. Søren's blood pressure fell through the floor this afternoon, and his heart rate plummeted. Katrina got him to the hospital and a crisis response team jumped right on the situation. She said it was pretty terrifying. He's feeling basically fine now. He's asleep next to me in the hospital bed with his leg draped up over my abdomen. They're giving two strong/broad antibiotics, steroids, and antifungals. Hopefully we'll know more in a couple days. We've had an up-and-down kind of month, actually. We've been telling his docs that something wasn't quite right for a few weeks, but they couldn't find anything. Søren's primary transplant doc has wanted to do a full body PET scan for awhile, but insurance has been refusing to pay for it. Now that we're inpatient again, they might relent. That's all I got for now. Yippee-ki-yay. How could they deny an inpatient PET?
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Post by the other mark williams on Aug 7, 2019 11:39:12 GMT -6
Ugh. I never seem to find enough time to write an update. So here's a really short one: We're back in the hospital yet again. Søren's blood pressure fell through the floor this afternoon, and his heart rate plummeted. Katrina got him to the hospital and a crisis response team jumped right on the situation. She said it was pretty terrifying. He's feeling basically fine now. He's asleep next to me in the hospital bed with his leg draped up over my abdomen. They're giving two strong/broad antibiotics, steroids, and antifungals. Hopefully we'll know more in a couple days. We've had an up-and-down kind of month, actually. We've been telling his docs that something wasn't quite right for a few weeks, but they couldn't find anything. Søren's primary transplant doc has wanted to do a full body PET scan for awhile, but insurance has been refusing to pay for it. Now that we're inpatient again, they might relent. That's all I got for now. Yippee-ki-yay. How could they deny an inpatient PET? It looks like we’re going to be OK for PET on Friday. Insurance has been arguing that a normal CT is sufficient, but our docs want a PET b/c Søren’s had like 10 or 11 CTs, and there’s some new literature that suggests a PET may give a useful different picture. They also want to do a brain scan. More later...
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Post by geoff738 on Aug 8, 2019 18:50:23 GMT -6
That sounds absolutely terrifying.
Hoping Søren is feeling better and you get some positive test results tomorrow.
And my best to you and Katrina as well. Keeping you all in my thoughts.
Geoff
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Post by the other mark williams on Aug 9, 2019 20:00:21 GMT -6
Hey folks, I just posted this to the FB page, and wanted to keep y'all in the loop...
----------
Hi friends,
OK, I want to update y’all on the events of the day.
First of all, however, I want to acknowledge that this entry represents how I feel *right now*. It’s possible I’ll feel differently tomorrow. But it’s important to me—and it’s likely important to other parents in similar situations—to honor where my emotions are *right now* by sharing them in-the-moment.
First, the Good News. Søren did really well with anesthesiology today. We were really blessed to have one of our favorite anesthesiologists (Dr. Einhorn) treat Søren this afternoon. Dr. Einhorn has been with Søren through 6 of his 14 (14? - I can’t remember if that’s the right number) procedures. She’s warm, funny, caring, and excellent at her job. She sets us at ease. And she was able to sedate Søren without using general anesthesia, which is great. It makes Søren’s recovery quicker and less painful. It’s good. We had two dear friends sit with us during the procedure, and it took our minds off things just enough to make it easier.
Now, the Bad News. Disclaimer: what we know right now is based on a *preliminary* read of the PET scan. We will know more on Monday, when we expect to receive the final read. The big news is that the infections are still present, and they appear to be largely unchanged in size. It is highly unlikely the team will want to remove Søren’s central line under those conditions. They will want to continue with IV antifungal treatments, possibly for quite some time.
It would perhaps be a bit of an exaggeration to say that I feel “devastated” by this news, but my emotions are close to that at this particular moment. And I want to honor that emotion by sharing it with you all.
I don’t feel “devastated” by having to keep his central line in. I’m concerned about it, because as I mentioned in the last post, having a central line is inherently an infection risk, but at the same time, we’re used to having it. We’re used to caring for it, we’re used to accessing it daily, we’re used to doing cap changes in the dark three times a week, and we’re used to dressing changes once a week in clinic. Katrina and I have done it for a long time now, and we can keep on doing it as long as we have to. On our best nights, we don’t compare notes to see who has given him his micafungin and flushed his lines more over the past week. On my best nights, I don’t grumble. On Katrina’s best nights, she’s gracious with me when I do. But not all of our nights are our best nights. Caring for his line takes a lot of energy. It’s always in the back of our minds that it could get caught on something, or that he could pull on it (whether inadvertently or on purpose). When washing his feet at night, there’s always concern that he’ll splash too much or pour water on himself. He just wants to be a kid, you know?
Any “devastation” I’m feeling is more related to the question of “WTF?” I mean, seriously: what is going on with these fungal infections in his lungs? Why aren’t they going away? Are they still active infections? Or are they granulomas with thick outer tissue, preventing antifungal medications from getting inside? At this point, the only way to know the answer for sure would be to biopsy the sites, which might be risky, given their location. And it’s not like there’s just one site of infection: there are several.
Probably the biggest reminder the past week has been for me is the reminder that while Søren technically no longer has CGD, he will be a stem cell patient for life. At the beginning of our journey—almost exactly two years ago—I think I held onto the hope that a stem cell transplant would simply “cure” Søren, and that he would then live a completely normal life. Maybe he *will* go on to lead a completely “normal” life (whatever that means), but regardless, he will always be a stem cell transplant patient. We will always keep an eye on his chimerism tests. We will always be on the lookout for GVH symptoms. We will always be cautious, paying attention to anything that looks like what happened on Tuesday of this week.
At the same time, that doesn’t mean we have to be consumed by our worry. It doesn’t mean that our lives aren’t full of laughter and joy. Søren will not lead a “normal” life because Søren is not a “normal” child. Søren is an exceptional child, at least in our eyes. He is exceptional in the way he finds joy and excitement in places where others might wither. He was so funny today while waiting for anesthesiology. He was just cracking us up, pretending like he knew how to log in to the hospital computer. He kept saying, “so much work to do!” More examples: Now that we’re back on 5200, whenever a nurse comes in that he hasn’t seen in months, he says, “I missed you!” Today when he and Katrina were being wheeled back up to his room following recovery from the PET scan, he said, “fun at hopspital!” (that’s not a typo—that’s how he pronounces “hospital.”) Who in their right mind says they are having fun at the damn hospital? (Or at the “hopspital” for that matter…) The answer, of course, is that *nobody* in their right mind says that. And thank God, Søren is not *in* his “right mind.” Søren is in a far more beautiful mind than most of us.
Thanks as always for reading along. I have more thoughts to share with you soon.
—Mark
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Post by kcatthedog on Aug 10, 2019 2:54:55 GMT -6
It is only natural and loving that you and your lovely wife want only the best for your son, no one step forward one steps backs, so your mixed emotions are perfectly sensible and understandable. I guess just try to focus on the actual progress and bare with the set backs ? My one parenting take away was that I ultimately questioned who was teaching whom about life: there is much to be said for the childish, in the best sense of the word, perspective, cue bladerunner theme 'Revel in your time !"
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Post by geoff738 on Aug 26, 2019 15:01:27 GMT -6
A belated happy birthday to Søren.
Cheers, Geoff
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Post by ragan on Aug 26, 2019 15:22:14 GMT -6
Hey folks, I just posted this to the FB page, and wanted to keep y'all in the loop... ---------- Hi friends, OK, I want to update y’all on the events of the day. First of all, however, I want to acknowledge that this entry represents how I feel *right now*. It’s possible I’ll feel differently tomorrow. But it’s important to me—and it’s likely important to other parents in similar situations—to honor where my emotions are *right now* by sharing them in-the-moment. First, the Good News. Søren did really well with anesthesiology today. We were really blessed to have one of our favorite anesthesiologists (Dr. Einhorn) treat Søren this afternoon. Dr. Einhorn has been with Søren through 6 of his 14 (14? - I can’t remember if that’s the right number) procedures. She’s warm, funny, caring, and excellent at her job. She sets us at ease. And she was able to sedate Søren without using general anesthesia, which is great. It makes Søren’s recovery quicker and less painful. It’s good. We had two dear friends sit with us during the procedure, and it took our minds off things just enough to make it easier. Now, the Bad News. Disclaimer: what we know right now is based on a *preliminary* read of the PET scan. We will know more on Monday, when we expect to receive the final read. The big news is that the infections are still present, and they appear to be largely unchanged in size. It is highly unlikely the team will want to remove Søren’s central line under those conditions. They will want to continue with IV antifungal treatments, possibly for quite some time. It would perhaps be a bit of an exaggeration to say that I feel “devastated” by this news, but my emotions are close to that at this particular moment. And I want to honor that emotion by sharing it with you all. I don’t feel “devastated” by having to keep his central line in. I’m concerned about it, because as I mentioned in the last post, having a central line is inherently an infection risk, but at the same time, we’re used to having it. We’re used to caring for it, we’re used to accessing it daily, we’re used to doing cap changes in the dark three times a week, and we’re used to dressing changes once a week in clinic. Katrina and I have done it for a long time now, and we can keep on doing it as long as we have to. On our best nights, we don’t compare notes to see who has given him his micafungin and flushed his lines more over the past week. On my best nights, I don’t grumble. On Katrina’s best nights, she’s gracious with me when I do. But not all of our nights are our best nights. Caring for his line takes a lot of energy. It’s always in the back of our minds that it could get caught on something, or that he could pull on it (whether inadvertently or on purpose). When washing his feet at night, there’s always concern that he’ll splash too much or pour water on himself. He just wants to be a kid, you know? Any “devastation” I’m feeling is more related to the question of “WTF?” I mean, seriously: what is going on with these fungal infections in his lungs? Why aren’t they going away? Are they still active infections? Or are they granulomas with thick outer tissue, preventing antifungal medications from getting inside? At this point, the only way to know the answer for sure would be to biopsy the sites, which might be risky, given their location. And it’s not like there’s just one site of infection: there are several. Probably the biggest reminder the past week has been for me is the reminder that while Søren technically no longer has CGD, he will be a stem cell patient for life. At the beginning of our journey—almost exactly two years ago—I think I held onto the hope that a stem cell transplant would simply “cure” Søren, and that he would then live a completely normal life. Maybe he *will* go on to lead a completely “normal” life (whatever that means), but regardless, he will always be a stem cell transplant patient. We will always keep an eye on his chimerism tests. We will always be on the lookout for GVH symptoms. We will always be cautious, paying attention to anything that looks like what happened on Tuesday of this week. At the same time, that doesn’t mean we have to be consumed by our worry. It doesn’t mean that our lives aren’t full of laughter and joy. Søren will not lead a “normal” life because Søren is not a “normal” child. Søren is an exceptional child, at least in our eyes. He is exceptional in the way he finds joy and excitement in places where others might wither. He was so funny today while waiting for anesthesiology. He was just cracking us up, pretending like he knew how to log in to the hospital computer. He kept saying, “so much work to do!” More examples: Now that we’re back on 5200, whenever a nurse comes in that he hasn’t seen in months, he says, “I missed you!” Today when he and Katrina were being wheeled back up to his room following recovery from the PET scan, he said, “fun at hopspital!” (that’s not a typo—that’s how he pronounces “hospital.”) Who in their right mind says they are having fun at the damn hospital? (Or at the “hopspital” for that matter…) The answer, of course, is that *nobody* in their right mind says that. And thank God, Søren is not *in* his “right mind.” Søren is in a far more beautiful mind than most of us. Thanks as always for reading along. I have more thoughts to share with you soon. —Mark I love hearing those anecdotes about Søren's beautiful, unique personality.
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Post by kcatthedog on Oct 30, 2019 13:30:51 GMT -6
Apparently, Soren is having some significant tests today which may result in him being able to stop some of his meds related to preventing lung infections I think. Fingers crossed for this little trooper and his great family !
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Post by kcatthedog on Nov 2, 2019 11:19:36 GMT -6
So, they have good news from yesterday’s tests, Mom (Katrina) typed she was holding back the tears typing, what a relief for them all to get some good news!
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Post by geoff738 on Nov 2, 2019 17:00:03 GMT -6
Great news!
Awesome progress for Søren and I’m sure a huge weight off for Katrina and Mark.
Continued best wishes,
Geoff
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Post by geoff738 on Mar 1, 2020 18:20:51 GMT -6
Doesn’t seem like Mark is visiting here much if at all these days.
However it seems that Søren is really doing great.
Which is of course fantastic news.
Wishing them continued good health.
Cheers, Geoff
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Post by kcatthedog on Mar 1, 2020 18:31:12 GMT -6
Today was a huge day for them. They posted on FB, the first day that Soren is completely off his meds with Doctor’s permission. You recall he had so many complications and infections and possible other infections , so this must be huge in terms of how much he has strengthened and how much more resilient his body and health is!!
Also, not to be crass, but you can just imagine the financial pressures so if he is strong enough to be off meds, that must be a very bright light in a dark financial tunnel for them ?
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Post by ragan on Mar 1, 2020 18:33:48 GMT -6
FanFuckingTastic. Hell yes.
Was just listening to Mark's record last night and thinking about them.
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Post by Deleted on Mar 9, 2020 10:05:12 GMT -6
Man great to hear that the kid doing great. I have kids so I understand how stressful all that could be.
The rest of this was deleted by me - Johnkenn. If you need clarification, feel free to pm me.
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Post by the other mark williams on Mar 10, 2020 10:29:40 GMT -6
Thanks so much for everyone's continued support here. It still brings tears of gratitude to my eyes every time I look and see this thread title. Johnkenn , thank you so much for holding onto my son's story here at RGO. I'm so grateful for the community here that has supported me through some of my darkest days on this planet. It's what online communities really can be at their best. I'll get you guys an update ASAP.
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