where we aren’t

In ALL, ILLNESS, SNIPS & SNAILS by Stephanie Klein49 Comments

WE STILL HAVE NO ANSWERS.  His platelets are fine.  His uric acid is fine.  His LDH is high, at 506.  We’ve been waiting all day for the oncologist to interpret these results.  Maybe they’re fishing because they simply don’t know what it is.  I hope that’s the case.  I know it’s strange to hope for that, but I hope for that over hearing the words leukemia, lymphoma, or bone marrow.  If they rule out cancer, which I really hope they do, my next question is, what’s next?  Leaving this cyst has already caused hydrocephalus.  What else might it cause?  I don’t want to have to wait until he’s a quadriplegic to do anything.  I also don’t want to risk harming anything if we needn’t go in there.  It’s such a strange balance to have to weigh.   

They’re running more tests.  Tests for cancer. The thing we keep hearing is, "This is very rare.  We’ve never seen this in a baby before."  Great.  Just great.  "I encourage you to start asking for second opinions."  The infectious disease doctor thinks it’s highly unlikely that this obstruction was caused by something infectious.  The neurosurgeon believes something else in the body has caused the obstruction, that it’s highly unlikely that he was born with it (because of where it is).  The oncologist thinks it’s extremely unlikely that it’s lymphoma (but can only know for sure with fresh spinal fluid).   They’re doing an initial blood smear to watch the behavior of his cells.  If they’re behaving abnormally, they’re then going to go in for a spinal tap and some bone marrow.  If the blood doesn’t show signs of abnormality, then we’re still left twiddling our thumbs.  And, if the obstruction caused hydrocephalus, what else can it cause?  You don’t want to go in and remove it (being that it’s so small and you can risk nerve damage, etc.)  So what happens if it’s not removed?  I don’t want to wait for something bad to happen.  But I also don’t want someone going in there and just making things worse.  So that’s where we are.  Or where we aren’t. 

Comments

  1. So I will say it, FUCK! Keep digging, don't give up and FIGHT FIGHT FIGHT! All of you. You are a strong family, you can do this, no matter what "this" is. Concentrate on loving him and each other. Please let all of us know if there is ANYTHING we can do. I am checking on all of you for the updates. You don't know me, but you are in my thoughts.

  2. Oh my God. Sending you peace and love, and i dont even know you. Dont know what else to say. I really really hope he's ok.

  3. wow. i haven't commented before, but i've been reading your blog for quite some time now. i've moved to new york a year ago, and am very single (though i'm in grad school, so i basically never go out), but in this way, you've provided inspiration – you remind me how neat new york can be, especially when i hate it here and you made it out with a great guy and two awesome kids. i'm so sorry that you are dealing with this crap, i wish it would all just disappear for you. hang in there, i think you are doing beautifully, and i know you and the entire fam will make it through!

  4. I'm picturing 20 years from now, Abigail and Lucas reading these entries – stunned because they've only ever known each other as happy, healthy, rivalrous siblings. You and Phil teasing him about what a rough time he gave you as an infant

  5. Oh, Stephanie, I'm so sorry that Lucas, you, Phil, and your family are going through all this. I hope you get some answers soon and that he gets well quickly once the doctors know what they're dealing with. Sending positive thoughts and prayers your way.

  6. Oh, I am praying for you that you get answers soon! This must be so frustrating! What are doctors for then?? Aren't they supposed to be able to know what the fuck is going on??? Once you find out what is IS, I would get several opinions before letting them touch him for a second! Stephanie….Praying for you and again, you don't know me…Your angel will be ok…He has to be.

  7. Continuing our vigil of caring – my darlings and I are pulling for you and yours…

  8. Stephanie:

    I just started reading your blog, and now check in a least once/day to hear how things are going. I am so sorry that it is taking so long to get answers. It must be so frustrating (understatement of the year). I don't have kids, so cant even begin to imagine what you are going through, but I will say that I am sending positive energy your way, and prayers for strength for you and your family.

  9. Lucas is a fighter; you are a fighter. Sending you strength, clarity and positive vibes over the blogosphere. Thank you for your courage and honesty. We're pulling for you over here!

  10. Just good thoughts and good energy being sent your way from Florida. Just wanted to let you know you are on the minds of many and we are all praying!

  11. A lot of people have been wishing they could conjure Dr House from Tv, He is actually based on Sherlock Holmes. The real "Dr House" is Thomas Bolte from new york, he is listed and he does the exact thing that Dr. house does on an independent level, He is super successful and famous and surprisingly accessible. Rachel Egler or Jessica Shafer are fabulous cancer docs, Fabio Fernandez-Tobar is an great neurologist. All of these people are at Texas Children's Hospital. They and a team of many others saved my son's life. When Doctors don't know what to do, they over medicate, run to many unnecessary test and often misdiagnose. We heard the same things that you are hearing now. If Children's hospital is out of the question, I hope you will cnsider a 2nd opinion at another hospital. You can always go back to your original team. If indeed Lucas has an something that cannot be identified, maybe you would consider calling Dr. Bolte, maybe he can refer a specialist in your area. I felt like a steamroller smooshed me when my son was sick. It was the advice of those that had been through it, that led me to try different paths. I swear I am not trying to be intrusive, just emphatic. My son and his father and I all think about you and your fam. We wish you the very best, our fingers and toes are crossed. Sending Transplanted Texas size hope your way.

  12. There is a whole community out here thinking and praying for you. Know that we are hoping for good news for you and your little bean and Phil and Abigail and your whole family.

  13. I'm wishing all of you the best! I can't imagine what it feels like to go through this. If you end up going to Texas Children's and want another opinion beyond that, I know a spine cancer surgeon in Houston (who does see children)whose info I can pass on to you–let's hope you don't need anything of that ilk, but the info's here just in case. With love and positive energy for all of you…

  14. I don't understand why you don't contact [or have his doctors contact] the top pediatric neurologist at the top children's hospital in the USA [or Canada for that matter – email the Sick Children's Hospital in Toronto] and ask if they will look at his MRIs etc. If you were a doctor you can be sure that is what you would be doing. All doctors, especially specialists, are not the same and nobody knows that better than doctors!!! Google doctors instead of trying to diagnose on the internet.
    I also don't understand why you don't respond to other commentors who have suggested your child should be in a Children's Hospital – this is just common sense. I find it rather surprising that you can respond to a post that makes you feel good but not to people who are really telling you something very practical and possibly life-saving.

    FROM STEPHANIE: We are at a children's hospital.

  15. I'm yet another mother/blogger who has never posted but reads your blog religiously. Hang in there, Stephanie. It sounds like an answer is right around the corner. I truly admire your strenth and ability to deal with all this and continue to post updates. This sucks. And I wish I could do something. I'm sitting here in boston waiting to hear more. I'm praying for all of you. I believe it will all be ok. You are a GREAT mom! Keep the faith,
    Anna

  16. Stephanie,

    I pray for you and your family. It's an ordeal but all the tests will finally get to the answer you are all looking for. The offer still stands, if you need anyone from Texas Childrens Hospital here in Houston, I'll do anything I can to refer you to someone who can help. God Bless.

  17. when my baby was 4 months old he was admitted to hospital with bronchiolitis – NOTHING as serious as you are going through obviously, but I recall that bargaining with God and how at that moment I would have given ANYTHING to be back at home, no matter how stressed out and exhausted I was and how messy my house was and my much my older children were driving me crazy…I just wanted NORMAL. You are probably in the middle of the night now, but its morning in Australia and I am thinking of you.

  18. If this originated in the NICU, I suggest you hire yourselves a lawyer. Obviously, not a priority, or even in the realm of priorities now, but a thought. Best wishes, our prayers are with you. One day at a time.

  19. Stephanie — I don't mean for you to post this, just wanted to say that Betty is crazy. I have never once written a defend Stephanie message before. But obviously we don't know every single thing going on, who all you have consulted, I don't think you even said what hospital he's at. Of course you're giving 200% trying to make Lucas better. Only a moron would post criticism of your efforts.

  20. First off, Phil and Stephanie are extremely intelligent people. I am sure, if needed, they would have a lawyer immediately. But, the main thing is Lucas right now.

    And, who said Lucas isn't at a Children's Hospital, here in Austin? Do you think they have him holed up at some Eastside Clinic? Seriously…

  21. Start calling and see if you can get into M.D. Anderson Cancer Center in Houston. Best care in the world. Absolute best staff, best doctors. They have a special children's cancer center. Even children without cancer are often seen here – children, babies, with rare conditions.

  22. You are clearly doing the best things possible for Lucas. Hang in there, I'm praying that answers are on the way for you.

  23. They're running more tests. Tests for cancer. The thing we keep hearing is, "This is very rare. We've never seen this in a baby before." Great. Just great. "I encourage you to start asking for second opinions."

    From me: i've spent a lot of time in the hospital stephanie. what they are telling you in hospitalspeak –according to your post– can be loosly translated as "we are in over our heads. we are not designed to handle this situation. this is out of our league."

    if you have to go somewhere out of town, most hospitals have a Ronald McDonald house nearby…
    someone out there will be able to get to the bottom of this, and figure out a plan to get Lucas through this.

    My niece had a craniotomy when she was 10, to get a benign cyst out of her pituitary stalk. she came out the other side of it, we all came out the other side of it.

    She is a survivor. we all are survivors.

    You and your family will be too, whatever the results are. You find out what you're dealing with, then you make a plan.

    the strength you have shown in what you have been through already is showing lucas what kind of mama he has.

    have you considered posting his hospital address or a PO box so your readers can send him a card or make him a blanket?
    someone is praying for your little bean in indiana.
    j

  24. Gee Petra, sounds like someone needs a good strong dose of sensitivity.

    Hope you're hanging in there Stephanie. I'm on the Aussie night-watch of prayers too :) We're all rooting for Lucas!

  25. I'm thinking of you and saying prayers for you and your family every day. Sendings lots and lots of hugs from San Francisco.

  26. I am all the way across the country and still want to do something – anything – to help you, but know that practically, I cannot. I am an attorney, so keep that in mind (together with my email), but that doesn't solve any immediate problems.

    I hate that I am about to give unsolicited advice, but I am going to second the call to go to Houston and get a second opinion. It does sound like your son has something completely out of the ordinary and, having been misdiagnosed in my lifetime, I actually got the right diagnosis at that hospital in Houston. Of all god-forsaken places (and heaven knows, Houston is a godforsaken place).

    Random story – quasi-cousin developed remarkably rare brain tumor. It actually went on a global medical tour, as no doctor had seen it before. Do you know who actually identified it? Yeah – that hospital in Houston.

    Mostly, and although I don't know you personally, I wish I could do something to make this all go away. I know you are the kind of woman who doesn't ask for any kind of help, much less from a stranger on the internets, but just know if I could mow your grass, watch your daughter, do your laundry, or simply make your family breakfast burritos (mine kick an inordinate amount of ass), I would. I would because you are inspiring.

    Be well, Stephanie.

  27. I also want to say a loud and proud "FUCK YOU" to this situation on your behalf. Yes, people have endured worse and have survived much worse, but this sucks out loud and it sucks that you got hit with the statistical improbability of horrific suckitude.

    I am the kind of chick that only cries in movies and wears the brave face in public. I am strangely invested in your family's crisis and honestly wish I could do something to help you all out. I know I can't, and am just a comment on the internet, but the sincerity is honest. I am hoping for the best for you.

  28. (big, big hug)

    We're all here to listen and send good wishes. Keep us posted. I'm praying for you all.. I'm glad your family's there.

  29. Having a sick baby in the hospital is like traveling the concentric circles of hell. When I emailed you the WaPost story the other day, I forgot to tell you I am the mother of a preemie (who is now 11 years old, healthy as a horse and off at sleepaway camp!).

    The day he turned one, he got a cold, which promptly turned into an antibiotic-resistant infectious abcess in his head and neck. Days in the nearby hospital, all the tests (spinal taps, MRIs, etc), lots of "we don't know" and "it might be lymphoma" and "it might be related to his time in the NICU, we just don't know."

    Finally, we went to a different hospital where we got some answers. Surgery and IV antibiotics finally knocked it out, but it was hell, so I feel for you.

    I agree with one of the above posters. I am sure the hospital in Austin is excellent, but they still can't figure out what this is because it is so rare. Maybe it is time, if Lucas is up for the trip, to go to Houston for a second opinion. Also, Arkansas Children's Hospital in Little Rock is excellent too.

    The other day, my son asked what was the worst day of my life, and I told him the day the took him away for surgery on his head. Hopefully, 10 years from now this will all be a dim memory.

    Please keep us updated, we're all thinking about you.

    Karen (who never cries, but is crying as she writes this)

  30. Please everyone – continue to pray for Lucas and his family but also please pray for the doctors. That they will find out what is going on with sweet Lucas and do the right things for him. Doctors are human beings they are working their hardest to figure this mystery out. How could anyone not do their very best when working to try and help a sweet child? Prayers for strength for you and your family, comfort for Lucas and knowledge for your medical care team.

  31. This is just not fair. It's just not fucking fair. I'm thinking of you all and praying for answers.

  32. Just another anonymous voice to let you know you, your babies and the whole lot of 'em are in my thoughts.

    Just another one to speak the words you're probably oh-so-tired of hearing… but keep pushing along, keep fighting…

    Will they allow Abigal to be next to Lucas? The power of having the twins together is amazing –

    Just another voice,
    Erica

  33. Children's Hospital of Philadelphia bar none the BEST pediatric hospital in the country. Ask, no TELL your doctor's to call. Have them send Lucas's test results. I know you said it was time for 2nd opinions, and you should get them from the best minds in the country. Working as a nurse I know that medicine is all about narrowing down possibilities and it sucks ass. I am sure you have a wonderful team trying to do their very best to help your beautiful bean. No harm, no foul in asking them to get his results out there to review. (As other posters have said Texas Children's is also wonderful.) I am praying for Lucas.

  34. This is terrible. You and Lucas are both in my thoughts. I'm sorry that you are going through this, as much as "sorry" is a shallow word in a situation like this. In fact, when I'm in bad situations, "sorry" is the last fucking thing I want to hear and sometimes want to hit the people who say it. But know that it comes from a good place.

  35. Stephanie, I agree with Jennifer C. Ronald McDonald helped a friend of mine whose child was ill. They were unsure of what was causing a lot of the things that were going on with his tiny little body, and pointed them in the right direction. His disorder was so rare the hospital ended up doing a medical journal article on him. He is healthy and thriving today.
    regardless, you and Lucas are in my thoughts.

  36. You will all get through this. I hope that they give you a name to put on the problem soon. Something concrete and answerable. So they can start making things better. HUGS! I will be thinking of Lucas and awaiting some kind of update. Good news, come on good news.

  37. This is crazy, Stephanie. I don't know how you are keeping it all together. I'm glad your family has arrived. You're in my thoughts.

  38. Stephanie

    Start TODAY signing the medical release forms to acquire all of Lucas's medical history from birth up to current medical tests so you have your own copies for second opinions etc.. There is nothing more frustrating than having lost results, repeat tests and lag time between busy physicians. Also, looking at all of his records from birth may reveal subtle information.

  39. Betty- Can you not pass judgment on Stephanie during this difficult time? Don't you think that, as a mother, she is doing everything she possibly can to make sure her baby is fine, which would include trying to obtain the best medical care? What mother would not do that?! She needs support right now, not criticism and judgment from a stranger.

  40. Betty. There are times to make demands of people and times when some empathy on your part should tell you that demands on their time are not appropriate. This is not a time for you to make demands on how Stephanie should respond to you. Isn't that obvious??

    I don't say that to be mean at all.

  41. It's frustrating when the doctors don't have all the answers, but keep pushing. Persistance is key – I am praying that you and your family will find answers to most importantly treat your little guy. I am sending prayers to whoever will hear them. Hugs & much love to you and your family.

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