Travis Update

Discussion in 'The Watercooler' started by Hound dog, May 20, 2008.

  1. Hound dog

    Hound dog Nana's are Beautiful

    We're just back from the apointment with the oncologist. And I'll be upfront with the fact that I haven't had time to digest the new blood work results, or what she said. But wanted to not keep you all waiting for the update.

    While Travis' wbc count is "normal" his lymphocyte count is elevated quite a bit. It shouldn't be, and is a more profound result since the wbc count itself is within normal range. (meaning he isn't sick right now) So more extensive testing is being done. Based on those results he may be facing another bone marrow exam, and a battery of other testing.

    So, we're right back at hurry up and wait.:biting:

    What I don't like about it is that she's holding off for a whole month. Seems awfully long to be twiddling your thumbs to me.

    I going to think about a second opinion. I don't like the way I'm not being listened to, and Travis isn't being listened to. I keep getting from her that the "normal" rbc count is great and nothing to worry about although I've told her 4 times Travis is showing signs of another stroke. (the bleed would explain the "normal" rbc results) And even she admitted that with the polycythemia his blood count shouldn't "go back to normal" on it's own. Because I pinned her down on it.

    I'm really getting tired of the " We don't know why's" I'm getting with these people.

    Ok, to look at Travis he doesn't appear accutely ill. Not today, not when he was at his last appointment. I'll give her that. But she wasn't there when he was horribly sick last week and look like death warmed over either and couldn't make it across the room. Ok, Travis did not see her during his weight gain over the past 3 yrs so she could see that he's suddenly dropped a huge amount of weight. Going from a near size 40 waist back to a 32/34 to me is a huge weight loss especially when none of his habits have changed. Why on earth would we lie about something like that???

    I keep getting "when we look at a young man Travis' age, healthy with no underlying issues...." Excuse me?? I've told them repeatedly of his dxes and the neurological regressions that led us to HER in the first d-a-mn place! We keep going thru his symptoms over and over. ugh What's the use, they're not listening. Too d-a-mn focused on his age, for pete's sake.:mad: And poo pooing everything so as not to worry us, while making it clear that it is extremely important that this be follow up and monitored closely.

    Yep. I've run into this type too many times before. I'm thinking even as I type this a 2nd opinion is in order. Just need to decide on whether to wait til this last batch of tests are all back or not.

    Ugh
     
  2. Shari

    Shari IsItFridayYet?

    Go with your gut.

    You can always cancel the 2nd opinion appointment if the results come back and you feel its not needed, but generally, it takes a while to get in, so go ahead and get it set up.

    Hugs.
     
  3. SearchingForRainbows

    SearchingForRainbows Active Member

    Lisa,

    I agree with Shari - Make an appointment for a second opinion. As she said, you always have the option of canceling it. It is so hard to wait when you're not sure of what you're dealing with!!! And, I think what makes the waiting even harder is when you don't have confidence in the medical staff. At least if you felt you were being heard, and you valued and trusted the doctor's opinion, the wait would still be difficult, but maybe just a tad bit easier. I think making an appointment right away for a second opinion is a good idea.

    My heart goes out to you, Travis, and the rest of your family too... As always, I'm keeping Travis in my thoughts and prayers... Hugs, WFEN
     
  4. Star*

    Star* call 911........call 911

    Know what I have found out.....?

    If you TELL your doctor that she can continue her tests - BUT you are going to also seek a second opinion it's like saying - "OH and by the way Daisy after you turn YOUR homework in, I'm having another professor go over your answers." and WHILE IT MAY make them squirm. You are saying "Yup - and someone is going to check YOUR homework too doctor."

    Hugs and support -
     
  5. Tiapet

    Tiapet Old Hand

    Lisa, My heart breaks for you, it really does. Follow your gut/mom instincts and get that second opinion. As others have said, you can always cancel IF you need to but I got a feeling you're not going to have to. Just make sure who ever you are making the second opinion with is not working with/for or near the others. You will want some one completely independent of them.

    As Star said, you could tell them you are seeking a second opinion as well. I've done that and had mixed results. I've had a doctor come right out and say something to me "well if you don't trust me then you can just leave and find someone else because you have to trust me or else this won't work (the patient relationship - regarding my middle difficult child and surgery)". I should have run at that statement right there. I have since learned that any doctor worth their salt welcomes a second opinion (it actually makes them feel good when they are seconded that they are right).

    Good Luck! In the mean time, here's to hoping Travis doesn't get sick before this all gets settled better!
     
  6. susiestar

    susiestar Roll With It

    Lisa,

    I am so very sorry this doctor has her head up her tushie. The "If I don't see the changes they didn't happen and if I don't see the symptoms when they happen they don't exist" attitude is just scary. and that seems to be her attitude.

    PLEASE get a second opinion. This doctor may be the best doctor on the planet on paper, but if she doesn't LISTEN then she just stinks at her job.

    I would NOT wait to schedule the 2nd opinion. It may take time to get in, and if a stroke is suspected, then treatment as soon as you can get in is important.

    I am praying for you, and sending big hugs.

    susie
     
  7. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm sorry-how frustrating-I agree about getting a second opinion. Hugs.
     
  8. TerryJ2

    TerryJ2 Well-Known Member

    Ditto.
    So sorry for your frustration. I can hardly imagine how upsetting it must be, when you have gone over and over everything, and still she basically dismisses you. Sigh.
     
  9. flutterbee

    flutterbee Guest

    I second the second opinion and I wouldn't wait.
     
  10. Hound dog

    Hound dog Nana's are Beautiful

    I've got easy child working on the 2nd opinion. We've decided it would probably be best to go thru her hospital this time as they are a part of the cincy area hospitals, located right outside of cincy.

    I'm all but completely fed up with small town docs. In all the years we've been down here I've come across only about 2 or 3 worth a hoot, and they don't stick around. Travis' neuro was one of them and we discovered he left for florida. So it looks like we're also on the hunt for a new neuro as well.

    Making this tougher, Travis is being bull headed again. Just mentioning the bone marrow test made him go ballistic on the way home. He swears he won't have another. Can't say I blame the kid for feeling that way. It's an awfully painful procedure to have done despite the anesthetics. So now I have to work on him. I'm using the fact that with a diagnosis he stands a good chance of getting medications to help with his symptoms so he'll feel better. As getting into complicated facts just confuses as overwhelms him. I won't go into facts until I have actual facts to go into, if you know what I mean.

    doctor is looking for the leukemia. I can't stand the fact they won't come right out and say it. Drives me nuts. But oh well, I know, and she knows I know, what she's looking for.

    The good thing is we should have the results on the lymphocytes back in 7-10 days. They've sent those samples to the University of Columbus lab. If she doesn't call me, I'll be calling her.

    What really, really irritates me is that she said that although he was given the polycythemia diagnosis 3 yrs ago, the bone marrow didn't actually confirm polycythemia. The diagnosis was made based on his history and the blood results and that the bone marrow was abnormal. NOW she says that it is possible that what they saw in the bone marrow 3 years ago could possibly be a precurser to what is happening with him now. WTF??

    I am not a person who puts docs up on pedistools. I don't expect them to always know all of the answers. But I'm wishing I'd asked her if she has ever actually treated a case of polycythemia, or one in a young person. What I'm getting from her sounds more textbookish knowledge of what we should be seeing, but aren't blah blah blah. Where as someone with experience might tell you that while also explaining that not every patient is going to go "by the book".

    So. Did they get the initial diagnosis wrong with the polycythemia? Hard to tell as the tests were sure coming back that way except for the bone marrow which was showing an abnormal development of cells. And good grief we're not just talking about a couple of blood tests here, but a series of 3 done by the nuero, the series of 5 done by the oncologist herself.

    OR. Did they miss dxing something more serious such as leukemia by assuming it was the polycythemia?

    OR Has the polycythemia progressed into the leukemic stage?

    That 3rd "or" is what both easy child and I are afraid of. Not that the other possiblities aren't bad too. Guess we're talking lesser of evils here.

    And as I've said before, Travis has never come anywhere near this so called "book". This boy is unique. Whatever is going on I'm positive has been going on throughout his lifetime. When I stumbled upon the fact that polycythemia can show up in newborns with the same results as what happened at Travis' birth it pretty well confirmed it for me.

    I guess time will tell. Time to dig out my :warrior: and dust it off.
     
  11. flutterbee

    flutterbee Guest

    Just keep being proactive. Work on getting an appointment for a second opinion and I'd write down all of these changes - kind of like a mini parent report, plus keep a daily journal of his health to take with you to the appointment. It will be helpful for the doctor, plus will make you feel like you're doing *something* and might alleviate (a little) your feelings of helplessness.

    I'm also sending you a PM.

    (((hugs)))
     
  12. SearchingForRainbows

    SearchingForRainbows Active Member

    Lisa,

    I'm glad easy child is working on getting the second opinion!!! I really like Heather's idea of keeping a kind of journal detailing his health. I think Heather is right - This should definitely help the doctors.

    As always, Travis is in my thoughts and prayers... Sending you lots of hugs. WFEN
     
  13. Big Bad Kitty

    Big Bad Kitty lolcat

    I am so sorry that this is so difficult for you and Travis.


    Sending you strength and lots of hugs. As always, you are in my prayers.
     
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