Please let us know if there’s anything we can do for you - whether that’s providing some financial support while you guys go through this or whatever. Just trying to think of what can help you at a time like this. Certainly, prayers, but if there’s anything in this physical realm we can do, please let us know.
Hey guys. Put this as an announcement, but it puts it up at the very top of he page. If it makes it too confusing or too hard to find, let me know and I can move it back. Don’t want it to be the opposite of what I was attempting to do.
I attempted to embed it as a hyperlink when I first mentioned it, but I might have done it incorrectly. I want people to know about it, but I don't really want the algorithmic webcrawlers to pick it up. (But maybe the BBCode for RGO prevents webcrawlers?? And also, I don't know enough about Facebook to know if you have to request membership in the Søren "group". If you do, I'll obviously approve membership for everybody here.)
Hi Mark, I'm fairly new here but just wanted to let you know I'm joining in with the many others that have your back and are praying/believing for nothing but great and beautiful times ahead for your sweet family. Thank you for sharing and please continue to let us know how we can help.
Post by the other mark williams on May 29, 2018 23:24:36 GMT -6
Thanks to all of you who have reached out. We so appreciate the support, in whatever manner it's offered.
By way of update, I thought I'd go ahead and just post here the most recent Facebook entry that I uploaded earlier tonight:
I write this on the eve of Søren’s second bone marrow transplant. I write in fear and in trembling. Indeed, I have found new ways to be afraid this past week.
The overarching fear is the obvious one that we don’t speak about: To put it bluntly, I am afraid my son is going to die. I am afraid he will never again feel the sun on his skin or breathe fresh air into his lungs. I am afraid he will never again smell Christmas or taste the ocean. I am afraid he will never again listen to the particular quiet of snow.
But those are fears for *him*. Those fears, worded in just such a way, would serve in a Hallmark card, albeit a very unpopular one. My own fears, on the other hand, are bottomless.
I am afraid I will never sit in the studio again with him on my lap, with me explaining how the different instruments in a mix operate. I am afraid I will never again laugh with him as I chase him through our house: the house we bought for him and for his breathtaking entrance into our world. I am afraid I will not have the chance to watch him grow up and learn the names of the planets in our solar system. I am afraid I will never get to listen to The Joshua Tree with him and watch both of us get goosebumps when Bono sings, “I believe in the kingdom come / when all the colors / will bleed into one / bleed into one / but yes I’m still running”. I am afraid that none of you will ever get to see how truly, truly, TRULY remarkable Søren is. That his smile is greater than any rainbow, his kiss more gentle than the softest blanket. I am afraid of so many things.
I am afraid our son is going to die, and that his death will render me with no will to live myself. How could there ever be color again in a world without our sweet Søren? I cannot imagine it, and so I can only bear to spend a few moments at a time with the incomprehensible emptiness of it all. This is why we don’t dwell on such things. Considering the death of one’s child is akin to walking along the edge of an enormous abyss: a single step too close, and one might slip into the unknown darkness below.
Someone recently commented that knowledge eradicates fear, and this lack of fear leads us to faith. I have thought about this a lot, and I have decided that respectfully, I disagree. I do not see fear as something primarily to be overcome. I do not see faith and fear in opposition to one another, no more than I see faith and doubt in opposition. I am not even sure faith can *exist* without fear and doubt. They are all part of the same triptych. The work of art cannot exist without the three parts. I am not ashamed to admit my doubts. I have them every day. What I most appreciate about a beloved community of friends is the willingness of others to step forward and say, “I believe for you today, Mark. On a day when you cannot muster it up for yourself, I believe on your behalf.” The past several days have been days where I could not muster it up.
The newest-minted fear I have faced the past several days springs from my recently acquired status of Granulocyte Donor. I have experienced quite a bit of bone pain, and I’ve felt extraordinarily fatigued. This kept me away from the hospital over the weekend, and the fear this wrought in me is a cruel one: I am afraid my son is going to die, and I will have been too weak to enjoy every last moment I could have had with him. This has been a horrible fear to face.
I am thinking also of how this second bone marrow transplant feels so different than the first one. At the first transplant, we celebrated a “new birthday” for Søren with cake. We leaned into hope, a hope that his CGD would be cured and he might live a long, healthy life. It also seemed to me at the time that we were on a highwire, yes, but that we had a net underneath us. That net was, “a second transplant is always possible if this one fails.” We don’t have that net this time. We desperately need this transplant to work.
One of my very favorite writers, Frederick Buechner, wrote that “a miracle is when the whole is greater than the sum of its parts. A miracle is when one plus one equals a thousand.” I suppose that is the miracle we are praying for. That the tiny stem cells from another mother’s umbilical cord blood—a mother we will never even meet—would somehow multiply inside sweet Søren’s body starting tomorrow. That this finite number of cells would divide, and divide again. And again. And again. And on and on. That these cells would take root inside Søren’s bones. That Søren’s current immune system would not fight these new cells. That the new cells would build an entirely new system of blood manufacture in Søren’s body. That my granulocytes would keep him healthy in the interim. That our boy would be healed. That he might grow to adulthood. That he might be a man of peace and gentleness. That he might love and care for others who sorely need to be loved and cared for.
And that a world of beauty might arise.
Thank you all for reading, for hoping, and for believing.
That is as beautiful as it is gut-wrenching. Thank you so much for your eloquent, unflinching honesty. I have a little boy (4) and a little girl (8 months) and I fear the same things that you do. Just like you said it. It's a heavy load to love someone as much as we love our little ones. It's everything the universe has to offer, on both sides of the ledger. But there's of course a Grand Canyon of difference between what I feel and what you're dealing with - I'm not actually facing it and you are. I'm so sorry you and your sweet little boy and family are having to walk this road. I can't fathom the fear and crushing anxiety. Everything I type sounds trite so I'll stop and just say God bless you and little Soren. I too am a Beuchner fan and I am praying hard for one and one to equal a thousand.
We are with you, your son and family. I am a bit older than you and my 3 kids are young adults, but you remind of the special qualities of their young days and of their growth: of our hopes and dreams as parents.
When you describe the abyss, that really resonated from me, as when I was going through my separation, I used to have a mental image of behind right beside a spinning uncontrollable vortex. If I slipped one step closer, I would get sucked in and complete lose it:no fun. I understand and completely empathize with how our rational brain tries to transcend our fears, but we are all human and I feel we are supposed to experience these dilemmas as part of our journey.
I hope this doesn't sound trite but I came to conclude life is a lesson in humility, as essentially everything is actually beyond our control;but we can make choices, like to love, to hope, to believe, to be real, even in the face of all our anxieties. Be assured that you are doing everything right, everything you can and caring for and loving your son as much as you can and he knows and feels that love. As for tomorrow:it will be, what it will be and we will still be here with you.
Last Edit: May 30, 2018 5:22:59 GMT -6 by kcatthedog
We are with you Mark, Soren is in our thoughts and prayers. I understand that fear of losing your child, it is all consuming, the day Dylan and I were hit by a car crossing the street all I could think about him (who was fine except for scrapes and bruises) where as I have suffered hip and knee pain ever since. As a father you feel your job is to protect him from this world, but you can’t and we just don’t know how to deal with that. Kids are fighters, better than adults when it comes to this stuff, so give him a big hug, breathe and do the best you can to just be there as a dad, as hard as it is to turn off those emotions and thoughts. The fact that I’m hear to give you this advice is the ultimate proof that miracles do exist in this world.
Post by the other mark williams on Jun 13, 2018 17:42:12 GMT -6
Here's my most recent update, everyone:
The question I am asked most often these days is also the most difficult question for me to answer: “how is Søren doing?” That is a totally legitimate question. And my answer is that I have no idea. I can tell you whether he felt well yesterday or not, and I can tell you whether he felt well today or not, but beyond that, I can’t tell you much.
We are in the weeks of waiting and watching, and one of the weird things about this interstitial, liminal space, is that how Søren feels on a day-to-day basis bears little resemblance to how he’s actually doing at a cellular level. Or, maddeningly, it *may* bear little resemblance to how he’s actually doing at a cellular level. There’s just no way to know. There’s no way for us to know, and there’s no way for his doctors to know, either.
Of course, all things being equal, we would prefer Søren have “good days” where he’s happy and smiling and energetic, rather than “bad days” where he’s lethargic and irritable. But the reality is that when kids are engrafting, they usually feel pretty terrible. There’s usually mucositis, bone pain, rashes, irritability, etc. As much as we don’t want to see Søren suffer, it would be kind of heartening to see an engraftment rash, as it *might* indicate the donor cells are taking hold in Søren’s marrow.
Generally speaking, we look for engraftment sometime in the neighborhood of Day 21-28. On average, cord blood engrafts more slowly than bone marrow. So in the meantime, we wait. And we watch. And we look at numbers from the daily-drawn labs. Søren’s WBC is all over the map right now because he’s receiving my granulocytes six days per week, so his numbers are all screwy. Every Sunday is a “rest day” where he receives no granulocytes, so those are days we particularly watch to see what his WBC count does.
Earlier I said I could tell you how Søren felt yesterday or today, but that wasn’t entirely true, because I didn’t get to see him yesterday or today. I had a granulocyte collection on Monday morning, and I felt really wiped out and crummy afterwards and had to come home to rest. I’ll be heading in to the hospital to see him on Wednesday afternoon, and I’ll stay until Thursday morning, when I have my next granulocyte collection. This is the rhythm. But I know Søren hasn’t felt particularly well the past couple of days. He’s been napping more. We had to add a fentanyl pump for pain. He’s having some trouble breathing again, and they had to give him some blow-by oxygen on Monday night. They were concerned that maybe his liver had become more enlarged, making it difficult for his lungs to fully inflate, so he had an ultrasound of his liver on Tuesday. He also had an echocardiogram to see if there was any additional fluid around his heart. The good news is that it appears his liver is stable (though a little enlarged) and his heart looks the same as it did a month ago, which is to say there’s a little fluid present. I’m told he did well during the ultrasound and echo. Katrina took some nice pictures. But I wasn’t able to be there, and I miss him. Tonight when I tried to FaceTime with him, he was more interested in a video on his iPad, so I said goodnight earlier than I wanted to.
These are hard, unsettling days, filled with the disquiet of uncertainty. But we wait. And we watch.
Mark has posted on FB today that so far Soren’s post procedure test results are very positive!
Indeed, thanks kcatthedog! Here's a copy of what I posted over on FB:
Chimerism Test, pt. 2
I have news to share, and at long last, it is good news. The results of Søren’s chimerism test came back today, and they showed 98% donor cells. Friends, this is fabulous. This means that Søren is engrafted, and that his second transplant is working. Oh my gosh, I can’t tell you how many tears of joy we have shed today. We are ecstatic and emotionally exhausted at the same time. We have been praying for this day ever since we learned of Søren’s CGD in September 2017. There are still some significant challenges ahead, but this is such a huge milestone.
One of the challenges is that Søren is showing signs of Graft-vs-Host (GvH) disease. I’ll explain more about that in the days to come. We are also still dealing with the lung infection. Tomorrow (Thursday), Søren will be undergoing an endoscopy and another CT scan. The endoscopy is to assess the GvH situation, as it is affecting Søren’s GI tract most severely. The CT scan is to assess the lung and spleen infections. GvH is treated with steroids, but if Søren’s infections are not under control, steroids could worsen the infections. So it will be a delicate balance that will require careful monitoring in the weeks ahead.
My days as a granulocyte donor have come to an end. Søren now has working granulocytes of his own, and we will be relying on them to attack the fungus in his lungs. The plan is to remove my central line on Friday.
Again, we have more challenges on the way, but we are so thrilled and so grateful to inhabit this moment. Today is a very good day.