Three Steps Forward, Two Steps BackPublished 9 years, 9 months past
As we were warned by many and are beginning to learn the very hard way, this is a journey of many setbacks.
The tumor that had grown in Rebecca’s head, forcing itself between all the most critical areas of the brain, was entirely or almost entirely removed. It’s mostly likely the latter, since entirely removing the tumor would have meant cutting into brain matter that simply cannot be sacrificed. So it’s very likely that microscopic bits of it still remain.
There was an initial pathology analysis done, but I’m not going to share the results because we’ve been told that the full workup could tell a very different story. Apparently, some tumors can look like other tumors at first glance, as it were, and the tumor type and grade that they initially identified is really rather frightening. Regardless, we don’t know for sure what we’re up against, and won’t for a few more days. We don’t know how much ongoing treatment she will require. It could be a lot, a long road of courses of chemotherapy and radiation bombardment that will sear cells and sicken her in an attempt to kill the tumor before it kills her. Or she might need no further treatment at all. Not really counting on that last one, though.
The problem is that even with the tumor removed and an alternate drainage path already created, Rebecca’s intracranial pressure is not staying down. Even worse, the drainage line that extends from the back of her skull cannot be set at too high a pressure level, or else cerebral fluid starts to leak around it onto the sheets. Worst of all, at least from my perspective, her energy and behavior levels aren’t correlating to the pressure levels in the expected way, which is a real mystery.
So tomorrow morning is another MRI, and the day after that will almost certainly mean another round of surgery — either to reopen the drainage channels in place, or to install an artificial channel that will drain fluids from her brain and dump them in another spot in her body.
Apparently that’s a thing.
Thus she faces her third major surgery in four days, and at this point we can’t even feel like we know that that’s the end of them. For all we know, she might need a fourth surgery, and then a fifth, and on and on. Not only are we uncertain about the true nature what grew in the center of her brain, we’re uncertain about when she can finally start healing. Our daughter’s life is in obvious peril, all while we lack even the most basic information about when and how we can help her fight to keep it. It is a special form of parental hell, one that cannot be fully understood even by those who live it.
And yet, today she was able to whisper a few words at a time to us through the fog of her exhaustion, telling us what she wanted to drink and responding to questions. She was able to hold and eat a popsicle without any assistance. She smiled as best she could at Kat’s silly faces and in response to visits from grandparents and friends. She played blinking and hand-squeezing games with me for a while. Later, she was able to kick off her covers and endanger her arterial line. She was, for all her lethargy, recognizably herself.
Three steps forward, two steps back. It is progress, but progress of a cruelly exhausting kind.
Eric, I am a doctor and I understand how hard this is for your little daughter. All I can say I pray this tumor has a good prognosis. Generally tumors on children carry a better outcome than in adults. My prayer so it make it safe and continue to cheer you up and be the source of joy on your life.
With all my wishes for speedy recovery.
Eric, we’re all still standing with you and praying for your daughter, for you, for your family, and for the doctors.
Eric, as a father of 5 and brain surgery patient myself I have a glimpse of your struggles. Your posts bring tears to my eyes, I want you to know that we are praying for you in our home and in our church every day. May God bless your family and deliver his glory upon you.
Eric and Kathy —
I lack the sufficient vocabulary, medical knowledge and faith to offer any words other than this: Jill and I are thinking about you and our days have been dramatically saddened by the tsunami you both are facing. We hope your friends and family are close by, that your doctors make good decisions and that your precious angel quickly returns to the healthy & smiling life path you both — and she — had assumed she’d take before last week.
With much love,
Jon & Jill
How I wish for you that this is the worst of it. That you will look back at this time with a vague memory that it was really hard, but having lost all the details, not really remembering the depth of the pain and fear. There’s no way to know from where you are what will happen or what the next few weeks will or months be like. All you can do it hold on, hold tight to those around you, love fiercely, and breathe through it all. I hope you and your wife are able to rest, to sleep, to eat well, to not worry about work or child care — that will give you strength and needed endurance. Life will get back to normal, eventually, no matter what normal looks like. Just hang on. Relax the tension when you can. Let yourself feel everything. And simply love.
Eric, you, Rebecca and your family are in my prayers.
Be strong amigo.
Eric, I can only imagine what you and your family are going through. Count me as another who’s been thinking of you and Rebecca ever since you shared the news and I’m sending whatver positive thoughts and energy I can.
Thank you for continuing to share this heart-rending journey, all too human and grotesque. Your courage and innate humaneness continue to shine through the horrors of unknowableness. Your children remain so very fortunate to have you and Kat for parents.
My heart is with you, Eric.
I read in an earlier post that you are at CHOP. That is a fantastic hospital with a fantastic staff. We live about an hour away, and know several people whose children have received world-class care at CHOP. As a father of two, I can’t imagine what you’re going through, and I wish you and your daughter the best.
I am a friend of Mindy Tashliks. My family and I have been praying for you, your family and your daughter. Although I have gone through a different experience with my daughter Sydney, (she is a TBI survivor) I understand your agony. I know too well what it feels like to see your daughters ICP be too high for too long and not know what tomorrow will bring. My advice is simple: stay positive. Only see the good. Positivity brings more positivity. Only speak in the positive. Only let her (and all visitors )hear and see you downright sunny in your optimism. She will get through this. Your daughter will get through this because there is no alternative that is acceptable. Believe that and make it be true by sheer force of prayer and positive energy. Prayers coming your way from all the Livingstons.
Strength and peace, Eric–and good health for your charming little girl, after a full recovery. Those are my thoughts and prayers for you, Rebecca, and your family.
Eric, I’m just a web worker who has been inspired and educated by your writing and speaking, but I just want to extend my best wishes for health and healing for your daughter.
Eric, stay strong. Hope everything turns out for the better.
Oof. Eric, you and your family continue to be in my thoughts. Wishing you all so much strength in going through this unimaginably tough time.
My heart has been heavy since you’ve shared your news on Twitter. I’m simply a web designer and developer who has found you through self-learning online. I’ve never met you or your family, but I feel exactly the same way I did when my nephew underwent life-threatening (but in the end, life saving) heart surgery at 1 year old.
I will continue to keep your family in my prayers. Your daughter is so strong and have many many people praying for her fast recovery. I wish you all the very very best, from the bottom of my heart.
It’s normal to feel like you are in a bad, sick dream. Yeah, they sort of guess at the first pathological exam and you have to wait a week or so to get the real info. All I can do is stand helplessly by as you go through that special kind of hell, one that is much different from my own family’s hell. Around the world, we are mentally holding you tight—and Rebecca, and your other family members.
By the way, when I have brain MRIs (stats in my favor) I’m allowed to play a CD and I bring one and listen to it over headphones. There’s still the jackhammer noise but it really makes a difference for me. Maybe someone there can get a CD she really loves and bring it in. I’m sure anyone on the web who lives in that area would gladly do it for you right away. Otherwise, send the info and what to order and I’ll get it to you. Any of us would.
Thinking back on my own experiences as a child in the hospital, including at her age, though I wasn’t going through the same type of thing, I just want to say:
I know people have a lot of advice. Be strong, be positive, be this, be that. They are trying to help. My words from my childhood would be:
Just be Dad, you know? That’s what she needs most. The same Dad you’ve always been.
Wow… even though I’m now in Seattle, through a few friends my wife was taken aback by this. I saw the URL and knew it was you. I’ve known you almost as long as I haven’t — which is scary in it’s own right back from the old Netforce days.
If there’s anything I can do to help out, let me know — seriously. Be well, friend.
The only advice I can offer is to fill your families life with joy. Bring laughter and happiness into your life. If you turn on the TV watch only comedies, have two dozen jokes handy for every moment. Finger puppets and funny hats your new accessories. Funny signs on your back and funny stories on your lips.
Let your child remember this, as the time she couldn’t stop laughing, it will also help you and your wife heal, to see her laugh and laugh with her. You are her Patch Adams.
I apologise if anything I have said is trite or impractical with how you feel or has in anyway missed the mark, I’m sure your doing so much of this and more. I just wanted to express what helped my family in difficult times but I fear my words are inadequate.
Much joy to you & your family.
My prayers are with you and your family at this difficult time.
I don’t know you personally, but my thoughts are with you. I wish you and your daughter the best of luck.
Ava sends Rebecca her love. You are all being so brave and strong and clear. We hold you all in our hearts. You have a lot of love and support out here. May your outcome be the best, and may the ordeal you now face fade in memory. Love and hugs.
You and yours are in our thoughts and prayers.
Amanda Cobes is my daughter-in-law. Please know that the congregation of a little church hugging the shore of Cayuga Lake in upstate NY is praying for your and Rebecca.
Good to hear there’s progress. +1 to Carolyn’s suggestion to play a CD in the MRI machine. And hold her hand throughout; brain MRIs aren’t a great deal of fun because you’re a long way in. My missus holding my hand was the way to stop panicking.
Best wishes from the Lawsons old chap.
Slow or fast….it doesn’t matter. It’s the direction that counts…This is the good direction!
Ya’ll are in my thoughts and prayers. I wish ya’ll the best of luck. I had a brain tumor my senior year of high school. I know how scary it is.
Rebecca has been my last thought before falling asleep and my first thought upon waking up since this started. Sending strength.
I have been thinking of you and your family frequently all weekend, and have burned a candle each day to send strength and healing your way, and will continue to do so until Rebecca is well on the way to recovery and health. Much love, Wendy
The fact that you can compose such a thoughtful, coherent blog post says a lot about your strength. We will continue our prayers for Rebecca, you and the whole family. It seems that she too is quite strong and I’m sure is so very pleased and comforted that you and the rest of the family are close and reassuring to her. Be well Rebecca, be well!
All our thoughts are with you and your family.
The Dielman family’s been feeling helpless here on the far west side of Cleveland. Just know that we’re sending good wishes and prayers, whatever they’re worth, to help Rebecca and the rest of you cope with this terrifying experience.
That this tumor was found at all is a miracle in itself, or the best stroke of good luck and/or timing imaginable, whatever you want to call it. This in itself is worth something!
You all have SO MANY family and friends pulling for you – take what you need from that collective strength.
Thinking of all of you, and sending all the good will and hope I have.
You, your daughter, and your family have all of my hope and good vibes.
Kat and Eric. Our suggestion is to use Caringbridge.com . I have included the info here.
Think of us as an online space where you can connect, share news, and receive support. It’s your very own health social network, coming together on your personalized website. And thanks to those who donate, we are available 24/7 to anyone, anywhere, at no cost.
Our personal, protected sites make it easy to stay connected during any type of health event. Family and friends can visit the site to stay informed and leave supportive messages.
Our SupportPlanner is a calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.
and it’s easy:
It takes just minutes to start a Site, set up a SupportPlanner or join someone’s community. Our protected online spaces have multiple privacy settings. Your personal data is protected and not sold. You won’t see any advertising.
This is all about you and your health social network.
Over a half a million people connect through CaringBridge each day, amplifying love, hope and compassion.
That’s a lot of love.
At this difficult time, thank you for sharing your family’s story. Thank you for being so open and public about this hardship. I have never met you, I live in the UK, but I keep checking back on your daughter’s progress and keep all of you in my thoughts and prayers. Nobody deserves to endure what you’re going through. I hope that you’re feeling love in the midst of this horrible place.
All my love streaming straight on through to you, Family Meyer.
I second Cary Wood’s suggestion. I just went through an MRI listening to Houses of the Holy. I’m sure Rebecca would appreciate something less aggressive. :)
Still, hearing something familiar is very helpful while you’re in that blasted magnet. BTW, Eric – Steven Pemberton told me an early member of the (original) HTML WG worked on the MRI. I find that somehow ironic.
I love you each and all, and know I’m keeping thoughts on sweet Rebecca’s progress.
While we’ve only met briefly at a CSS seminar in Chicago in 2004, I’ve been a long-time reader of your blog and books… My heart breaks for Rebecca, you, and Kat. Your daughter and family are in my prayers and hope for a good prognosis.
My thoughts go out to you and your family… Please share as much as you need/want to; we’re here listening.