Søren Williams

Praying you peace and blessings.

I can’t imagine how hard that would be. You are heroes.

You are in my thoughts, man. Stay strong.

Thanks so much for the continued thoughts, prayers, and conversation, guys. It means so much to me. We had a really scary Christmas night that I'll recount below. This is pasted over from the Facebook page:

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Day +210

From Mark:

Well, Christmas Day was largely a great day for Søren, Katrina, and myself. Søren had a blast opening an Elsa doll and riding on an inflatable unicorn. He has good taste in presents.

But in what I can only describe as sheer terror, we find ourselves back at Duke tonight, and admitted back to unit 5200 with our BMT family.

Around 9:00PM on Christmas night, Søren suddenly started vomiting. He threw up four times at home, and a fifth time in the car on the way to Duke. I think I need to explain this better: it's always scary when your two-year-old vomits over and over and over. But when your two-year-old vomits a bunch and then his eyes glaze over, he becomes listless, and he stops responding when you call his name, it's terrifying. Like, you call, “Søren! Look over here, buddy!” but he doesn't even move his eyes to follow your voice. It's so, so, so scary.

Not to string you along any further, we managed to get him to Duke, and we're now in a room on 5200, spending at least tonight. He has an elevated white count, and he may have suffered an adrenal overload. It's hard to know what caused this: it may be a viral infection, it may be a bad flare up of GVHD, or it may be something else.

But he is now stable, and after getting some steroids, he has started acting like himself again, including prying a walkie-talkie/phone off one of the nurses and asking to call his cousin Addison at 12:45AM. He is now asleep on my lap in the hospital bed.

He is just as marvelous as ever.

But I am reminded at how easily we fall into a casual expectation that our child is going to be fine. At Day +210, one can be lulled into thinking everything is OK, when in fact a terrible turn of events can pop up very, very quickly. I never cease to be glad at how close we live to Duke Hospital, and never have I driven as fast to get here nor run as many red lights as Tuesday night. (I mean, I think there are literally nine stoplights between our house and Duke over the 2.6 mile span, and two lights were red. And yes, I looked both ways. No one was driving on Christmas night.) But it was so terrifying to hear Katrina from the back seat, where she sat with Søren, say, “I'm really scared right now.”

I was really scared, too.

But for now, he is stable and he is sleeping. On me. While I type this journal entry into my phone. And just before he fell asleep, he was interactive again, and he called me “daddy,” and he told a joke.

I am grateful for him and for Katrina. They bring light and love into this dark heart of mine.

May the end of this year bring light and love and hope into all of our homes and lives and families. Peace be with you all.

—Mark

So sorry to hear of this. Praying for answers and healing action.

Good luck man.

Thanks, everyone. We got discharged today around noon, and we’re back at home. I just got Søren down to sleep by reading him some Daniel Tiger and some Harry Potter. We’re all pretty exhausted from the stress and lack of sleep over the past three days, but so grateful to be back at home together.

Praying, Mark.

thanks, ragan.

From Mark:

Hi friends,
It seems that all too often when I write to you, it’s to share bad news. Unfortunately, this time is no different. Søren had a CT scan last week to check on his ongoing lung infections, and they discovered what appears to be a new infection of unknown type or origin. We were all fairly shocked by this.

Many of his older infections were smaller, and in the case of his spleen, the lesions were completely gone. I don’t want to overlook how good that news is: it’s wonderful. But the new infection is quite concerning.

Right now, the plan is to do a bronchoscopy so as to biopsy the area. If they can get a positive ID on the organism, they may be able to target it with specific medications. He’s already on just about as wide a spectrum of antifungals as you can get: micafungin via IV 1x/day and posaconazole via mouth 3x/day. But it’s been awhile since he’s been on an antibiotic, so if a biopsy were to reveal a bacterial infection, it would help his doctors plan a specific course of treatment.

Could this be something besides an active infection? It’s possible. His WBCs may have conglomerated there in the process of healing his other lung infections. But the more likely scenario is that it’s an active infection of some kind.

This has been a blow to Katrina and me. While we remain hopeful it can be managed, it will mean at least another couple of surgeries, and it will mean we keep his central line for an even longer amount of time. He will, in fact, need a *new* central line, because he’s probably going to be taking a new medication via IV, and we’re down to only one functioning lumen on his current line. Over the weekend, Katrina and I both felt a scared feeling that we haven’t felt in several months. The scare on Christmas was acute; this scare feels somehow deeper and slower. Oh how I pray it is not a steam train gathering speed.

This whole thing is quite curious, because Søren’s clinical picture looks so good for the most part: He’s constantly running around the house, climbing on everything, adding new vocabulary words every day, and asking us to read books to him. We were at the hospital for a few hours on Tuesday morning, and upon leaving, as I was driving back towards home, he shouted from the back seat, “Dada! Doughnut!” He wanted me to pick up a Krispy Kreme or a Monut on the way home, I guess. As far as I can remember, he’s never even *had* a doughnut before, so I’m not sure where he got the idea from. So he feels well overall.

He continues to have problems with T cell production, however. He has some T cells from the cord blood transplant, but his body is still not making new ones natively. While it’s not unheard of to take this long, he is on the slower side of things in regards to T cell recovery. T cells are produced in the thymus gland, and the thymus pretty much completes its T cell-making duties by the time we reach puberty—it’s actually at its largest and most productive in childhood. It’s possible Søren’s thymus was damaged during one of his chemotherapy treatments, but there’s no way to know for sure. We just keep hoping and praying that his thymus will come back online. Notably, he’s still on immunosuppressants (in his case, mainly tacrolimus), and the function of an immunosuppressant is to keep the body from producing too many T cells that might attack the transplanted stem cells. Today, his doctors started lowering his tacrolimus dose. Maybe this will help his thymus wake up.

The final thing I want to address here is something that’s been on my mind to bring up for many, many weeks, but I haven’t entirely known how to frame it here.

Katrina and I have seen our careers (and income) dissolve right in front of us over the past 18 months. Katrina’s capacity to work in a healthcare-related field is severely restricted. My own capacity to practice psychotherapy is greatly diminished. At my peak, I was able to see about 20-25 clients each week. At this point, I can really only see a half dozen (and those via video session). I just would not be effective as a therapist beyond that point. I have fewer emotional resources now than I had before this journey started for our family.

But we need income. And I need to utilize whatever skills I possess to support my family. I ask for your help and connections in thinking through what a flexible path ahead might be over the next couple years. I’m especially attracted to project-based or contract work, as it generally affords greater time flexibility, which is paramount with Søren’s health situation being what it is.

If you’ve followed along with our story, you’ve no doubt read several of my pieces over the past year, so you’re aware I can write. I can write not only prose, but I can write a pretty damn good academic paper, as well. I have writing samples from graduate school on subjects such as community assessments, intervention planning, SMART goal formulation, etc. This type of writing might prove useful for something like grant writing.

Another thought might be medical writing or translating of some kind: I’ve had many responses over the past year from folks saying my explanations of Søren’s illness and treatment have helped them understand anatomy in a way they hadn’t before.

Several people have commented to me that I should write a book about our journey. If you agree, give me feedback about what you’d like to read.

My heart is still all-in with audio engineering, music production, and music composition, so as much a long shot as it may be, let me know of any projects you might be aware of that need audio services. This could be as simple as student recitals being recorded professionally or as complex as scoring to picture.

Katrina’s photography business continues to grow, and it’s been awe-inspiring for me to watch her evolve as an artist over the past 2-3 years. I built a new website for her a few weeks ago at fiftytwohundredphoto.com (yes, I build websites, too), and we’ve been considering adding video services, which I could be more involved with in terms of filming and editing. If you know of a small business looking for a promotional video, a new website, or even just a short video ad for social media, let me know.

I realize this is a fairly scattershot approach, but leads in any of these areas could be really helpful.

As always, thanks for reading, and thanks for sending love to our little family from whatever part of the globe you inhabit.

Cheers,

Mark

Thank you so much, Geoff! I appreciate the encouragement.