Coming home with new information (Feb. 8)
Lucas will be discharged tomorrow morning from Children’s and hopefully we’ll make it safely home before the next big snowstorm hits in the afternoon. He’s pretty much back to his old self, but there’s still a few things that are weird, such as an occasionally high heart rate, some residual swelling, and a new, goofy eye twitch. There’s so much going on with him sometimes that it’s hard to know what is significant and what isn’t, but we’re confident along with the doctors that he’s ready to come home.
As promised, we’ve taken advantage of our days in the pediatric ICU to access all the specialists that might be able to help tackle Lucas’s broader challenges, and through the various consults and tests over the last week we may finally have an answer. It’s not something that’s easy to share but we know that many of you reading this right now have followed Lucas’s progress from his early days of life and so it’s important for to us to explain the new information. This morning Lucas underwent an electronic test of the muscles that confirmed that he has a congenital muscle disease, most likely a genetic disorder called Myotubular Myopathy. It’s devastating news – hard to even write these words – but based on our own research over the weekend we’re convinced he will ultimately be diagnosed with this particular disease.
Like us, you probably have lots of questions about what this means for Lucas and we won’t try to answer them all right now. Many thoughts have been going through our minds over the last few days and it’s impossible to sort through them when the realization is still so raw. In some ways the news wasn’t a total shock: Lucas’s hypotonia has improved very slowly since he was born and we had begun to doubt the theory that a brain injury alone had caused his low muscle tone. Upon seeing Lucas the other day, the neuromuscular doctor quickly confirmed our fears, and the conversations we’ve had with this thoughtful, humble man over the past few days have helped begin our process of understanding Lucas’s disease.
Mytobular Myopathy is a very rare muscular disorder that affects approximately 1 in every 50,000 boys. It is not degenerative like most muscle diseases, but nor is there a cure or treatment for it. Lucas may gain some strength and muscle tone in the months and years to come (especially with the help of therapy), but he will likely always need assistive technology to breathe, move from place to place, and communicate with the outside world. Research on this disease only really began in the 1990s; prior to that, it was assumed that anyone with Myotubular Myopothy would die in infancy. Since then some boys have survived into their teenage years, and some attend school – unlike some muscular diseases it does not affect cognition, and intelligence levels for those who survive tend to be high.
Right now, Lucas’s future remains very much unknown, but we can say this: Lucas hasn’t changed, just the information we know about him has changed. He’s still the same beautiful, little fighter that we’ve been lucky enough to know and love over the last five and a half months. He has already taught us so much. We will continue to experience great joy together as a family. And we can’t wait to have him home again.
Comments (25)
Jennifer Ciplet
February 15th, 2010 at 7:18 pm
Hi guys,
I’ve been thinking of you all recently, as Eliza is about to turn 1 year old this week, and I remember the last time I saw Burke was when I was pregnant with her. Anyway, I am very sad to hear the news about Lucas’ diagnosis, but I also continue to be awed and amazed at the love, compassion, humor and light your family demonstrates to the world. Blessed be.
Jenn
taleigh
February 13th, 2010 at 4:01 pm
burke & krista,
i know we haven’t been in actual contact for awhile, but i have been holding you in the light from afar. my heart, and those of so many of us who have been part of your lives and particularly this blog, is filled with love for lucas and what is manifesting as a result of his existence. as we witness the creativity and openness with which you love lucas, we relate because you brought the same to the movement. may it continue to grow exponentially!
Spencer
February 10th, 2010 at 8:37 pm
B&K,
The amount of love evident on this blog is staggering. Probably enough to power Euro Disney. And as difficult as Lucas’s journey may or may not prove to be, that love will carry him through. I can’t wait to meet him.
Spencer
Hally
February 10th, 2010 at 5:54 pm
Lucasito, now we can set aside one smaller mystery and focus on the deep mystery of knowing you and the pleasure of having you with us in the world. This little community of yours is waiting for you to come home to your birdies overhead, and to watch your antics with that giraffe. Everything you do makes us so proud of you.
Mackenzie
February 10th, 2010 at 12:53 pm
Thank you for continuing to share so much with all of us, and I hope you are drawing all the extra strength and love you need in return. Remember that humans are marvelous in the ability to persevere, and to surprise, and that so much is always possible.
alan
February 10th, 2010 at 11:47 am
I’ve learned a lot about love from you three, thank you so much for sharing. That Lucas is one tough little hombre!
Tanya
February 10th, 2010 at 10:47 am
So glad you’re finally close to something definitive… it must have been so hard not to know. It took a lot of perseverance on your parts to get the information you needed. Lucas has a big community of people who love him and will be there to support him (and you) over the long haul. I’ll keep all three of you in my thoughts as you process this new reality.
Julie Graves
February 10th, 2010 at 2:58 am
Krista and Burke,
I have spent the last hour or so reading first your blog, and then following the links, searching for more understanding of this profound and rueful news. And looking back at the posts and pictures you have sent over the last days and weeks.
Lucas is such a beautiful little boy! If the doctors’ current thinking is accurate, then you have a smart little guy to work with, and that will be both a joy and a challenge. But that is for later. Right now, just sending you wishes for serenity and strength, and a smooth flight back to the nest with Lucas.
ashley
February 10th, 2010 at 2:25 am
Yes, he is the same little beautiful fighter that we have come to know and love so much. Little Lucas has made such a big impression on all of us over these last five months. And while his future maybe unknown, the deep love that is felt for him daily by friends and family from all parts of the world is unquestionable.
xo
Ashley
Jeanette Artura
February 10th, 2010 at 1:36 am
Sweet baby Lucas is in our prayers and has been since the day of his arrival. All of you have shown such enduring strength and courage that at times must take more than it seems possible to give. That is love. Love for each other and for this beautiful child that has touched us all. I believe love conquers all and that miracles are always possible-sometimes just not in the way that we expect them. Love, “Hi”-Bob & Jeanette (Nett Nett)
Sheeva
February 9th, 2010 at 10:21 pm
Hi Lucas- hope you make it home to your snuggly crib and parent’s arms before the next snowstorm begins!!
Krista and Burke- I thank you for sharing all of this with us. I currently have a good friend whose 2 1/2 yr oid daughter underwent her 4th brain surgery (in the past 6 months) yesterday. I read both of your entries almost daily and am in awe of your strength and inspired by your love as parents. I am certain that now that you have some more information, this will only empower you further to help Lucas. And I would not be shocked if either of you earned a PhD in the process one day….
Sheeva
dan
February 9th, 2010 at 10:17 pm
hi friends,
i have been thinking a lot about you, and then tio sha just told me about the blog. it’s hard to read the latest news, but i’m glad to know it and grateful that lucas has such wonderful family. sending you lots of love.
Nina Randolph
February 9th, 2010 at 10:09 pm
You have been on my mind the past two days and tonight I went to your blog to catch up and to find your news of a diagnosis for Lucas.
As soon as the roads are clear for travel, I would like to come for a visit. It has been too long and the little guy has changed so much since I last saw him – grasping toys, eyes open, but still the fashion model!
Sending love to the three of you. Nina
Megan W.
February 9th, 2010 at 9:12 pm
Hi Krista, Lucas, & Burke,
My thoughts have been very much with you in the past several weeks. It sounds like you will be doing a lot of research and reading now that you have something more to go on. As a student on the Columbia Health Sciences campus and an employee at Weill Cornell Medical College, I have instant access to just about all the medical literature, past and present. If there are any articles you would like me to get for you, or any research in particular that you’d like me to do, just say the word. I’ve already been perusing pubmed, where I see a few recent summaries of clinical knowledge and also some case studies (and an awful lot of intricate articles about genetic microbiology).
Brook
February 9th, 2010 at 8:58 pm
Thinking of you guys – give our love to Lucas – he is lucky to have you as parents.
sammie & Dan
February 9th, 2010 at 8:10 pm
We are praying and pulling for Lucas and his parents! His “fighting spirit” that has moved him steadily forward in these past months and his parents dedication and love are powerful medicine!
Sarah
February 9th, 2010 at 7:53 pm
Thinking of you all and sending you peaceful, calming and optimistic thoughts.
Daniella
February 9th, 2010 at 4:29 pm
People have said everything I was going to say. . . It must be a bit of a relief to have a more concrete idea of what is happening, and for now just sending our love from NYC!
Madeline
February 9th, 2010 at 4:02 pm
Sending you lots of love while you and your whole family deal with this new information. I want to say that one thing I’ve learned from my partner’s family (many of whom live with muscular dystrophy) is that no diagnosis provides the last word on anyone’s prognosis – everyone is different and experiences the challenges of health problems differently. Lucas is a fighter, and he has the best parents and network of loved ones any child could ask for. He is also a sweet little peanut and we’re all sending hugs and love to him and to you guys.
Alison
February 9th, 2010 at 3:36 pm
Burke, Krista and Lucas
Thinking of your little man and his mighty spirit. He has taught you much and will continue to do so. With your learning you will also teach others, doctors, nurses and friends. Thank you for sharing your experience with us.
Alison
Erica shaw (WHC)
February 9th, 2010 at 2:56 pm
Krista and Burke,
I am trying to form a sensical response to the past couple posts and it is hard to do. Lucas has such a special place in my heart, along with the two of you, and it is sad to hear that he has been sick. I wish that things for him could be easier, it is bittersweet to hear that he is ok with all the poking and prodding that he receives in the hospital. I am glad to hear that you all will be able to go home today, and even with the new information about his prognosis, I know that he will reach his full potential possible. Hopefully we can see each other soon, you have no idea how much Amy and I enjoyed our night with Lucas. Keep safe and warm and know that we are thinking of you all.
Tio Sha
February 9th, 2010 at 2:12 pm
It’s amazing what a mix of emotions this news gives me. For one thing, it’s a big relief to have some more conclusive answers to the elusive mysteries of this fabulously sweet baby Lucas. For another, it helps me begin to focus my daydreams of playing and loving Lucas as he grows and sculpt ideas of fun exercises and games we could play as he gets older. And all at the same time, it’s a heavy realization about what a tough life he’s got going for him, and what a huge impact this has on your lives as his parents and our lives as your community. That said, you know we are all here eager to be engaged and involved in whatever ways possible in moving forward through the cycles of mystery and research and discovery with you. Life is so precious, and you three give proof of that every day.
ilana jean
February 9th, 2010 at 12:16 pm
Thank you for sharing this news on the blog, with your community in DC and across the US (and further!) I am thinking of you three so much with this difficult news. We are prepared to bring you some home cooking whenever you need it.
Nadine
February 9th, 2010 at 11:55 am
I have nothing to say in words, just a wave of feeling for all three of you.
Drake
February 9th, 2010 at 9:55 am
Holding you all in my heart.
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