We heard back from the chief of neurosurgery in Boston. He let us know that his team reviewed Lucas’s situation at a conference, and he was able to clearly see the ventral cyst in the spine canal. They believed it to be an arachnoid cyst (something our neurosurgeon here was quite adamant about it not being). The Boston surgeon believed the cyst "could be seen either on a congenital basis or related to some type of focal obstruction to the flow of CSF." He didn’t believe the cyst had anything to do with the hydrocephalus (this is the first opinion we’ve heard like this, all have said it they believe it was the cause of hydrocephalus). He believed given the location of the cyst, it’s rarely the site of an infected focus, as he’s never seen that. He basically said that they leave these types of cysts alone unless they are causing symptoms or are expanding. Symptoms, in a child of Lucas’s age are difficult to "sort out — but typically there might be an increase in leg spasticity or weakness, a change in the vigorousness of leg movements, etc." He suggested Lucas be carefully followed by a neurologist and that a follow up MRI happen in three months, unless of course there are symptoms or reasons to do it before then.
This is tough because a neurosurgeon at NYU, a neurosurgeon in Cincinnati and our neurosurgeon here in TX believe it was the cause of the Hydrocephalus. All agree to watch it closely, though surgery has been suggested by the neurosurgeon here. We’re holding off for now. We’ll see what happens. We have a meeting with Lucas’s neurosurgeon here in Austin to discuss all these second opinions. And then we’ll really see where we are(or be equally conflicted). It seems there may be nor right or wrong answer.
We leave for New York next Wednesday… which makes me nervous. Just the flying, the pain of travel and packing and germs in the air. Normally, I wouldn’t think twice about such things, but after being in a hospital answering so many questions about TB, it gets me thinking differently.
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Oh, Stephanie. As if being a new mom was not damn hard enough.
Thanks for the update Stephanie. Wow, what a situation to be in, with various experts telling you different things. I know it's hard to decide who to trust, and I will be thinking of you and Phil as you weigh these very different opinions and make a decision about the right treatment for your beautiful boy. Big hugs to you, Phil, Lucas and Abigail.
I am glad you have heard more opinions. Good luck with the decisions. Good luck with the trip.
My prayers are with you and your family.
Ok…first thought in my head was, But will it continue to grow? I mean, if it's the size it is now, and they're suggesting you can wait three months, then they must wait and see if it changes size. SO then what, surgery, when it's larger? ugh. Second thought was, well, none of them said to surgery, STAT, so that's a good thing to hang on to!
Good luck with the NY Trip, I think you need it :)
my prayers will continue to be for you and Phil to know who to listen to and to be confident you're making the right decisions for the little man. thanks for the update!
Hang in there, Stephanie, you are getting opinions as you were urged to do and that is good. Sorting it all out will be difficult but you can do this.. (-; Please keep in mind that second opinions can sometimes lead to a solution. Some of us never bother to get a second opinions and if we did, we would be just as conflicted as you are now. YOU CAN DO THIS..!
Still praying for an excellent outcome in the future for little man Lucas Beckett.
I'm glad you're getting answers but I'm so frustrated for you. I just want someone to tell you to do this or do that and all will be fine. Obivously nothing in life gets tied up in a neat little bow like that but I'm still going to wish for it for you.
My husband and I are also heading to NY on Wed- JetBlue @ 11:40a. If flight times are similar we would be happy to offer our extra set of hands if you need help with anything!
Hang in there
Ann
Best wishes to you and your family as you continue down this path.
For most of my life, I thought that medicine was a pretty black and white thing. My hypochondriac self feared the answers doctors might give me, but at least I assumed they'd have answers. It's been really crappy to discover through my experiences and those of others just how much gray area there really is in medicine. I'm glad you're getting many opinions and know that you'll make the best choice for your son. My thoughts and prayers for you and your family will continue.
Well, I see this as good news. Watchful waiting is more comforting than surgery STAT. Safe trip & best wishes to you 4.
So in the end which opinion do you end up going with? It seems tough and very confusing.
I've been checking back several times a week to see if a diagnosis and plan had been made for treatment. Thanks so much for updating us.
Have fun on your trip back to NYC!
Stephanie, I clearly don't envy the situation you're in, to say the least. The best I can offer is that you go with the doctor who speaks to your gut. Y'know, the one who makes you feel safest at a time when things feel so treacherous. Simply because the chief at Boston said something, it doesn't make it so. Nor does it mean it isn't so. (I know, no help in those words.)
Poor example – my mother has emphysema. She has many docs to choose from in NYC. The doc with whom she feels best is on LI. Is he the "best"? Dunno. But she feels best with him and her emphysema is under control.
Since you're coming to NYC, are you planning to see any docs here? Wisoff, who has been mentioned by others, is truly great. My limited experience with him is that he is not only technically proficient, but very caring and attentive to parents. (He removed parts of a friend's son's brain. I know.)
I wish I had a magical answer for you. Alas, I don't. I can only say I continue to think about you and your family and pray that all goes well.
Incidentally, the most recent pics of Lucas are wonderful. *I* think he looks more like himself than he ever has, if that makes any sense.
You and Phil can't possibly be doing more for Lucas. I hope you're resting easy (a little) knowing that you're exhausting all avenues and resources and exploring all options. Good for both of you, and the very best wishes for the entire B-K clan.
Thanks for your "second opinion" update. Follow up with the question "have you ever seen a case like this before?" There is a doctor out there who has and he/she knows the answers you seek.
You may want to consider talking to Texas Childrens Hospital in the medical center in Houston.
Hmm…I'd be curious to ask the Boston docs what *was* the cause of the hydrocephalus, if not the cyst? How can they definitely say they're unrelated if another cause for the hydrocephalus wasn't evident?
I just can't imagine having so many competing diagnoses and theories and options. It has to be maddening. I continue to think hopeful thoughts for you and your family.
How is Lucas? Does he seem different (as the first doctor told you he might be)?
Hallo' my woman….Im GianMary are you fans…
Happy summer
Ben Carson at Hopkins is supposed to be amazing- however I could see that adding one more opinion just clouds things.
stay strong… you are amazing.
Keep asking questions and follow your gut feeling. Hoping Lucas is doing just fine.
i wish all of these doctors and surgeons would just lock themselves in a room for twelve hours and examine everything together, discuss everything together, and make up their damn minds with more certainty!
i continue to pray for the lucas bean…..
I have been following your journey with Lucas. Stay strong. I'm sure the trip to NYU will be OK. My thoughts, well wishes and prayers are with you and your family.
Yes, thank you for the continued updates — I continue to pray for you all. My heart is with you!
Wishing I had more to say other than……I'm sending you and the little one and everyone in your family loving light and energy…..it may not mean much but the love is there.
Safe travels.
Wishing you all the best as always.
I'm so sorry for all you're going through. Specifically, regarding your anxiety about flying with Lucas and the germ count on airplanes – isn't it better to have lots of white blood cells? When my daughter was having chemotherapy we had to be careful about infection when her WBC was low.
I know it's impossible but try to Relax a little bit. I hold my breath for you.
The rescuing hug. love heals all things. Hi Stephanie – I wanted you to see this photo. I couldn't post it here, so I posted it on my blog. You will love it. it's about twins and the power of love to heal. http://www.lisanatoli.com
Of course you must be terrified. Sending you all the love and my thoughts…
First time visitor to your blog. You're a good writer. But what you write about smacks of a self-absorption. A Taker rather than a Giver. Balance better, expect less, be happier. My 2 cents worth.
As mentioned above, and based on my own research – Texas Children's Hospital in Houston is WIDELY recognized as the leader in Pediatric Neurology. It's worth a call.
Oh, Stephanie, I too wish I had more to offer than good thoughts and keeping you in my prayers. The commenter above was right that more opinions often lead to other solutions and more questions to ask, more ideas to probe. This is overwhelming – there is so much to go through and figure out – but you will get through it and rest assured that little Lucas is lucky to have parents who care enough to be so thorough and weigh the decisions so carefully.
And enzo, please ease up. Realize that Stephanie is a new mother dealing with some very difficult issues. This is *her* blog and if she wants to come here for support, the vast majority of her readers are happy to give her whatever support and comfort we can. Try to have a little empathy.
Stephanie,
I too feel conflicted about offering more unasked for advice. But if the doctors you've seen thus far aren't in agreement over essential diagnosis, etc., then you might want to consider one more voice to weigh in?
I also recommend Dr. Ben Carson at Hopkins. He's been Director of Pediatric Neurosurgery for over 20 years. By reputation he's a brilliant doctor, who's also compassionate and wise.
May the love you have for your precious children and your husband sustain you during this awful roller coaster ride of uncertainty.
How can one NOT be absorbed by these overwhelming problems!! Where our children are concerned, particularly when there are serious health questions, you'd have to be an unfeeling robot not to be out of balance.
Still praying for you all, especially Mr. Handsome Lucas Bean. I hope the next few doctor visits and your upcoming travel go smoothly for you all.
And dang, enzo. Lighten up.
Just wishing you all a safe trip to NY. Hoping you find your way through medical opinions regarding Lucas. As always, sending my best.
Not that you would need yet ANOTHER opinion, but Mark Souweidane at Cornell is outstanding – a Pediatric Neurosurgeon. He is also a good human being and is very hands-on.
Good luck to you, Phil, and Lucas.
Stephanie, you are a really good mom. You and Phil are both really good parents, and really good partners. You are co-presidents of Abigail and Lucas Land and that is really hard, and you are both doing an awesome job of parenting them and co-parenting with each other.
Why are you going to NY with a sick, undiagnosed baby?
Listen to Phil. Stop crying. It doesn't accomplish anything. Listen to your intuition.
Stephanie,
I would stay home with Lucas and let Phil and Abigail go to NY. As a mom and grandmother, I always erred on the side of caution.
I think you are doing a fine job and that your instincts are spot on.
You and your family are in my thoughts and prayers.
Stephanie,
Intuition is a really good, reliable mommy-resource. You're doing great, so is Phil. In the end, you'll see how you both are fitting into the puzzle just the way you're supposed to. And Lucas will be better for it. Those babes are lucky to have you both. Good luck in NY.
I wouldn't go to NYC. The US open isn't important.
Crying doesn't accomplish anything. For that matter, emotion doesn't accomplish anything. So do we suppress all emotions and all their expressions, too?
Stephanie, you're doing a great job. So is Phil, I'm sure. You're both stressed, tired, and scared. I'm sure fuses are short right now. There's no "right" way to process something like this.
Cry if you need to. Cry while you're doing what needs to be done. Evaluate what needs to wait and what takes priority, and cry while you make the decisions. You just keep moving, through the tears. Which is exactly what it sounds like you're doing.
Hugs to all four of you. Still praying for you all.
by the way… I'm sorry to comment here on a post that's not allowing comments. My heart just really went out to you today.
OKAY … having spent most of my life in NYC before coming to the 'burbs … my street-smarts are screaming to jump through the computer screen and BITCH SLAP several commenters.
REALLY … get a life! Commenting on SK's 'really rather good" talents as a wordsmith … then reflecting on how she's a tad self-absorbed …. grrrrrrrrrrrrrrrrr!
If you were paying attention, you might have noticed that she's got a beautiful son, with potentially major health issues — and no consensus.
Aborbed? Uh – yeah. Who wouldn't be?!
And don't even get me started on "challenged immune systems" and airlines…
It's called life … and Stephanie and her young family are living.
I read these coments and my head is spinning like Reagan in "The Exorcist"!!! The cacophony of comments is just too funny.
When you have done everything possible to ensure a wide view of opinions — you know what? You might as well live.
And Stephanie & Phil seem to have mastered this important life lesson.
Let 'em breathe, folks.
They have earned it.