***LCB***

Re: ***LCB***

• LCB34 member

  January 2011

  Hi!

  I saw your update about Cal but was just checking in quickly and didn't get to respond.  I am so glad that the hematologist gave you some peace of mind!  And, I am even happier that it appears to be something minor.

  We are still playing the waiting game.  Her genetic results won't be in for 4-5 more weeks.  And, the team of doctors isn't meeting until the beginning of February.

  We did get her CF sweat tests results back and she tested negative for CF.  I am so relieved about that - even though we still don't have answers, I'm glad that we have crossed something else off of our list of possibilities.

  As of now, Alex and I are just trying to live as normal as possible - taking her to the zoo, aquarium, out to dinner with friends, etc.  I am trying to cherish the time we have right now where she is happy and seemingly unaffected by her issues as a minor cold could land us in the hospital for weeks.  I just don't want to look back on this time and regret living my life totally scared and worried about every possible "what if".

  Thanks for checking on us.

   

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• SeaSoul member

  January 2011

  Isn't it strange how they think she has a pretty serious underlying issue but not knowing what the issue is, there is nothing that can be done in the meantime?  I guess you can't JUST treat those "symptoms" (meaning, the low platelets, high WBC, etc.)?

  I'm a little surprised the team of doctors isn't meeting sooner...but I suppose it's reassuring that it's not so urgent that they had to schedule it immediately.

  I'm glad to hear the CF test was negative...when's her next CBC?  How often are they doing them?

  I think it's great that you are going about your lives as normally as possible.  And very glad to hear that she remains symptom-free!

  Re: Cal - yes, it was nice to hear that we needn't worry.  I'll be interested to hear the results of the PTT & various Factor tests.  Was surprised she didn't order a CBC, but I guess the fact that the original one was normal was enough for her.

  Childhood cancer (DH) + chemo + radiation = 0 sperm.
  LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
  LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
  Life is beautiful!

  
  

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• LCB34 member

  January 2011

  They were going to meet earlier but Kate's doctor is out of the country getting married and she wants to be involved.  So, it was pushed back.

  We are to the point where a lot of the tests the need to run can only be run at a research institute like St Jude's - not a clinical hospital like Texas Children's.  I had no clue there was a different but, apparently there is.

  And no, they can't really treat her issues.  Obviously if her platelet count get beyond a certain level she will have a transfusion, and if her neutraphil count get to a certain point she will be hospitalize in isolation.

  But, those are only "quick fixes" since her bone marrow does not make enough cells - her bone marrow is flawed so she will never have "enough? and transfusions, etc will only help her on a temporary basis.

  She had a CBC every week to see where her levels are at.

   

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• SeaSoul member

  January 2011

  Gosh, that is a lot for a mom to handle (and dad!  and, of course, baby...poor girl with all those blood draws).  I can't wait for them to come up with a diagnosis.  Hugs.

  Childhood cancer (DH) + chemo + radiation = 0 sperm.
  LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
  LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
  Life is beautiful!

  
  

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