Phil and I left the hospital last night for an hour. We were both breathing a unified sigh of relief.
Here’s what it’s not: TB, Toxoplasmosis, a syrinx. A syrinx is INSIDE the spinal cord. Lucas’s cyst is outside the cord. It MIGHT be an arachnoid cyst. A ventral (front) intradural (between dura) arachnoid cyst. It’s about as rare as they come. And it being in such a tricky spot makes it very hard to remove. So our worry is by far not over. Of course I’m scared shitless that it will grow, will add pressure to the spinal cord, will cause his movement to change. Of course I’m still terrified, but at least I know about what I’m terrified.
Oncology finally got back to us late last night, after waiting the entire day to hear the interpretation of his high LDH results. They thought it was highly unlikely that it was any type of cancer/lymphoma, etc. They cannot rule it out 100%, but they find it very improbable. Very.
So now we’re back to the neurosurgeon who needs to guide us through the options. Phil and I are feeling much better… but of course, there’s still an inflamed spinal cord. And we need to figure out what’s next. But I do feel better knowing what it’s NOT. Now pardon me while I go google "arachnoid cyst."
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Here's to exhaling. I hope it's good news from now on.
ha- google is the next site i'm going to. good to know some things it's NOT. you and yours are in my thoughts and prayers, lady. :)
Thank god for things it is not. I will continue to send you all positive thoughts and keep you in my prayers. Stay strong Mommy.
Here's to hoping that the news continues to get better!
*tears*…out of relief….for what it isn't
Hooray for answers! Sometimes the unknown is so much worse than reality and it looks like this is one of those times. Hopefully the road ahead is less bumpy than the road behind. Glad you got out for a little while and are able to exhale-if only half way.
Stephanie, I, like many others, read your blog on a daily basis and have been following the events you and your family have been going through with bated breath and hopeful, loving thoughts.
Yesterday, I clicked back through your archives. I re-read funny snippets about shopping for cowboy shoes, snarky, every-couple arguments between you and Phil, preparations for your wedding. The thought struck me that whenever I write in my journal, I'll often look at the empty pages I have in the thick book before me and wonder what events will eventually transpire to fill those pages.
I guess my point with this is — you couldn't know a year or a year and a half ago what was going to transpire today and you couldn't prepare for it. None of it is your fault, none of it is Phil's fault. When I, as a stranger, read your blog as a whole, it reads like good things continue to happen to you from difficult circumstances. I truly hope (and believe) that the current situation is another example of this.
I truly wish the best for your family, Stephanie.
I hate hospitals. I hate doctors even though I was an Oncologist myself. Doctors never say things for sure. It's possible. It's not 100%. I can't guarantee…. It is possibility in math. I hate it. I can feel how you are feeling. I'll pray for you and your family.
Stephanie, I, like many others, read your blog on a daily basis and have been following the events you and your family have been going through with bated breath and hopeful, loving thoughts.
Yesterday, I clicked back through your archives. I re-read funny snippets about shopping for cowboy shoes, snarky, every-couple arguments between you and Phil, preparations for your wedding. The thought struck me that whenever I write in my journal, I'll often look at the empty pages I have in the thick book before me and wonder what events will eventually transpire to fill those pages.
I guess my point with this is — you couldn't know a year or a year and a half ago what was going to transpire today and you couldn't prepare for it. None of it is your fault, none of it is Phil's fault. When I, as a stranger, read your blog as a whole, it reads like good things continue to happen to you from difficult circumstances. I truly hope (and believe) that the current situation is another example of this.
I truly wish the best for your family, Stephanie.
oh phew, I am breathing a sigh of relief too. I went to bed last night so worried about little Lucas, hoping you would have some answers soon. I'm glad to hear you finally heard back from oncology. I hope you get closer to finding out what it IS soon.
Glad you got some fresh air and some alone time with Phil.
Learning what it's not is a level of relief in itself. Keep doing what you're doing………..we're rooting for you, Phil and the beans!!
Well I googled and it sure sounds like the best of all options. You're both soo strong and that's what Lucas needs most from you. My very best wishes and prayers.
that's great news that they've ruled out a lot of scary stuff. And I'm glad you and Phil got out of the hospital for a bit. You seem calm, determined, and optimistic, which is an ideal way to go though an ordeal like this. Continued finger crossing from NYC.
Whew. Stay strong. Sending you positive energy and good vibes.
I also wanted to 'off the subject' comment on how I respect your strength as a wordsmith even in these stressful times.
I found such comfort and release in writing long ago. I started keeping a journal for my first nephew – I wanted him to have a record of his early days to chuckle over as he held his own children. Once the extensive doctors visits and hospital stays started………the words wouldn't come. They choked instead of comforted and after a time they ceased to come at all.
The beans are lucky they will have a record of your thoughts and actions while they are small. They are doubly lucky that it will be more than just a stale baby book – your words give immortality to emotions.
For some reason, it says on my youtube video: 'the year of the cyst" that you linked to it from this website. But I cannot find my video linked on here…
I just saw that someone you know may have an arachnoid cyst. I have had eleven brain surgeries because of mine. Which is what my film is about. If you ever want some questions answered from a real patient instead of a doctor, feel free to ask me.
I hope whomever you were speaking of is feeling better…
I just started reading your blog after my mom told me that you were going through something with your son that mirrored a lot of what I'm going through with my son. My 15 month old has been diagnosed with an arachnoid cyst in the center of his brain about the size of a golf ball. We are still in the process of finding out the next step… If you'd like to talk with someone in a similar circumstance, I'm just an email away.
Yay for the nots. Thanks for the great news. Your pfriend in Pflugerville.
Hey, Stephanie – just a short note to say I've been thinking of you and Phil and your sweet family and hoping for the absolute best. I'm only an hour away – say the word if you need anything.
if google doesn't help you find thorough information on Lucas' condition, checkout http://www.taumed.com. it's a health search engine.
Wishing Lucas a speedy recovery!
I know you're doing everything, I hope yr also talking to CHOP or other hospitals that have more experience with kids. They might have seen more of those rare case situations. Just a thought. Wishing you all good and healthy things.
Phew! im glad to hear this! Hopefully the good news keeps coming! Hang in there lady…
So glad some of the worst possibilities have been ruled out. Here's hoping your sweet little one can be at home with you and Dad and his sweet little sister, healthy and happy and comfortable soon.
I had a ex boyfriend who had an arachnoid cyst. In many cases it is easily treatable wtih medication, no surgery necessary. It is simply a fluid-filled cyst in the membrane between the brain and the skull that doesn't drain properly, and instead of being an oval-esque sac it has branches that spider out, hence "arachnoid." Sometimes a shunt helps, like he had placed. Sometimes surgery is recommended, but that is no guarnatee that another cyst won't develop. My information on this is about seven years old, but that's what I know of it, for what it's worth.
so relieved stephanie…sounds like things are definitely looking up for your little Lucas Bean… phew… keep the good news coming….
Thank god, Stephanie! I hope the news continues to get better and better. We're all still thinking and praying for you!
Ooooh, I'm relieved right along with you. Thank God it's not any of those!! That sweet baby will be home soon, I just know it.
How's Abigail's tushy?
I exhale with you. I am relieved with you. When Lucas is old enough, you'll tell him how he scared you and daddy. "You had us freaking out, you had my blog filling up with messages…" Sending you love still Stephanie, you're almost there x
I've been refreshing this damn thing since yesterday. I breathed the same sigh of relief when I read today's update. This is good news… here's hoping little Lucas is home soon.
Broke a fortune cookie yesterday and it said, "you will receive good news soon". I am hereby transferring my fortune to you.
We're still vacationing & to my husband's great displeasure I've insisted that we go to Friday evening services tonight. He wanted to go fishing. He brooded for a bit and eventually turned to me & said, "You wouldn't be insisting if you didn't want to say a mishaberach for Lucas, would you? Now I realize you're right." So we'll be at the Aspen Community Chapel at 6 P.M. & Lucas' name will be called out for a prayer of healing.
Hang in there. It looks like they're on the right track.
I'm breathing a sigh of relief with you. What's been ruled out so far is all goods news.
Hang in there Stephanie and Phil. Be strong for your sweet baby boy. I have four little miracles – 9, 7, 2 and 1. I think there is something every day that makes me catch my breath. It's what keeps me breathing. Peace.
So glad to hear the good news, and hope more is forthcoming soon. I find it wonderful that you have managed to blog eloquently and honestly about everything you have gone through. It will be such a great thing to look back on someday when he's graduating law school or whatever he choses to do. I really regret not writing through some of the hardest times in my life becasue they were too…hard.
Well despite its limitations, thank goodness for medical technology, so some things could be ruled out. I'm glad you don't have quite as many worries to spin around in your head now, Steph. Very glad things are a bit better. You will remain in our thoughts and your updates are very helpful. Thanks for continuing to share yourself.
Dear Steph,
We love you and hope for the best. Stay as strong as you've always been.
Love,
Carol & Jeff (and, of course, Rick–y)
Long time reader; can't recall if I've ever posted. I doubt you have the time or energy to read all these posts, but if you do, have you been looking for other neurosurgeons from which to seek opinions? At this point, if I were in your situation, I think I'd be trying to find out who the best pediatric neurosurgeon in the country is and trying like hell to get my kid in to see him/her. How one goes about finding the best pediatric neurosurgeon in the country I have no idea. Google?
I am so glad your family are here supporting you. How you and Phil hung on as long as you did by yourselves…well, you're made of sterner stuff than some of us! Keep hanging in there.
Mayo and Johns-Hopkins are two pediatric neurosurgery centers that seem to be rated top notch on cursory Googling. Wishing the best outcome for you and your little bean.
So glad you have a partial diagnosis for Lucas' problem. You're all in my thoughts.
Take comfort in that this will be your memory, not his. Some day you'll tell sweet Lucas about how when he was a baby he sat in the hospital, scaring the crap out of you. He'll only be half listening, and mostly non interested which will frustrate you…in the most amazing way.
I'm so glad you're looking up. I hope things continue in this direction as you get more answers. My thoughts and prayers are still with you.
Really a great blog…I would love to follow it…
A.K.Ravishankar
This is good news! Isn't in amazing how much you can learn about a subject you never wanted to learn about? I hope this isn't your next memoir–but maybe I do, because I'm sure it'll have a HAPPY ENDING!!!
cd, I could not agree more.
Sending continued prayers and love for more solid answers and solid plans to help heal the little guy. Know that we will all continue to pray and send positive thoughts for as long as it takes to get little Lucas healthy, happy, and playing with his sister (and parents!) again.
If you're looking for 2nd opinions – I second the recommendations above. If you still do want to consult on anything re infectious diseases, Children's Hospital of Philadelphia is also fabulous and I can give you the name of someone there – email me if you'd like the contact info.
Wow! I haven't had a chance to read your blog in a while and I'm catching up (with a bit of shock). I must've googled 10 medical words in an attempt to keep up! I can only imagine the stress you guys are under. I'm glad you have family there to help you out. Stay strong!!!
What can any of us say other than {{{HUGS}}} to you and your family. We are here for you and are hoping for the best.
"Mayo and Johns-Hopkins are two pediatric neurosurgery centers that seem to be rated top notch on cursory Googling."
I agree with the above comment – if you need to have any surgery for your precious little guy you should go to the very TOP hospital. I have been very impressed with MAYO myself – they really are a great hospital with the best MDs.
I would research the TOP people in their field and go with whoever you find the best for you. You can't be too careful when it comes to your precious little boy's future and health.
Now that you have some partial diagnosis you can take that info(medical records) to another hospital.
Hope things are improving…..
WooHoo! Things are looking up!