Conference turris::womannotes-v3

    My prayes are with you and your daughter!  
    
    You sound like you to are strong, I dont know what I would do in
    this sitaution.
    
    If there is anything I can do please call me, I work in MRO4 and
    live in Clinton.
    
    Randi-Lee

    
    Wendy,
    
    My prayers and with you and your daughter.  U Mass is an excellent
    hospital with a lot of very good doctors and nurses.  
    
    All I can say is take one day at a time and don't dwell on the bad
    things that can happen, savior your time with your daughter.
    
    If I can do anything, let me know.  I work at MLO and live in
    Lancaster.
    
    Dianne

    Wendy,
    
    All I can say is I'm sorry that your daughter has had a recurrence.  I
    will keep you in my thoughts.  
    
    Meg

    Wendy-
    
    Keep us posted - we care!
    
    If I can do anything for either of you, let me know.  I work
    in Boston (BOO).  
    
    Lynne (HRH)

Oh Wendy, I'm sorry. You and your daughter have been handed more
than your share.

I hope things go well and that she recovers from the surgery
fully and quickly.

Kathy

    Wendy
    	UMASS is a great hospital. My mother was in there earlier in the
    year with a severe case of pneumonia....thanks to the dedication of the
    doctors, nurses, she's way ahead of where she should be in progress.
    Think positive thoughts and all will be well......
    
    peg

    For certain things, I will bend my ultimatum.
    
    Wendy,
    
    I can only offer hugs, but they are good hugs, strong and
    multitudinous.  You are welcome to as many of them as you can stand.
    
    E Grace

    I'm sorry.
    
    You have my support - for what it's worth.
    
    I wish I wasn't so far - we could talk on the phone. But, just in case:
    830-3537.
    
    I suddenly wish I knew you.
    
    Now, I suddenly fell I do.
    
    I don't know why.
    
    Keep strong.
    
    All our thoughts are with you, as is God's
    
    Alice T.

    
    wow.
    
    BIG hugs, and oodles of support.
    
    you might want to also see
    
    MEDICAL
    291 - brain tumor...need help locating good surgeons
    617 - recovery after brain op.
    
    all my best
    
    -Jody
    

Wendy,

I'm sorry to hear the bad news and can hardly imagine how you are
able to stand it.  My heart goes out to you as well as my prayers
for both you and your daughter.  Add me to your resource list, if 
there is anything at all that I might do, let me know and I will 
do my best.

Massive healing gentle hugs.
jimc

    I'm so sorry.  I hope and pray all goes well.  Just remember to take
    care of yourself too!  And please keep us posted.
    
    Good Luck to you and your daughter
    
    Linda

    Wendy,
    
    UMass is an excellant hospital......they will do thier very best for
    your daughter....I will keep you in my prayers......
    
    denise

   Wendy,

   Hugs and the best of luck to you and your daughter.


   						Terza

    Wendy,
    
    Hugs, prayers and lots of postive energy and support.
    
    with love,
    cheyenne
    
    

    Hugs, prayers, and all the positive energy for as long as you need it.
    
    PJ

    
    
    Love and Prayers to you, your daughter and your family.
    
    Jackie
    

    
    Wendy, love and light to your daughter, you, the doctors, and
    everyone who enters your daughter's precious life during this
    time.  Wishing her a thorough, rapid healing.  Wishing you big
    strength and deep patience.
    
    Love,
    
    Carla
    

Hugs, wendy.  And take a few home for your daugher, too!

--jim

    Hi,i'll be praying for your daughter.umass is a great hospital my
       sister was in there almost 3 years ago for a brain tumor also
       it did'nt look good for her for awhile she went through kimo and
       radiation...but she doing pretty good the tumor is frozen has been
       for 3 years she also lost alot of her use in her left side but she
       still manages pretty well and she lost the sight of her left eye due
       to where the tumor is..acording to everyone she only had 8-9 months
       to live and shes still here and she'll probably out live alot of us.
       so think positive and have your daughter think positive believe me
       your state of mind will help all of you during this awful time..
      if you'd like to talk to someone write me and i'll give you my 
      number......good luck god bless..
    
                             laurette
    
    ludwig::araujo

    
    Wendy--
    
    	More hugs and more positive energy coming your way.
    
    	I'm glad to see that you're heading out my way, I live very close
    to the Big E fairground.  Did you get discount tickets for the fair
    at work??  If not, let me know--we have plenty here at Westfield.
    Anything to help.
    
    Hugs and healing energy,
    
    Debbi

    	Something like this would probably put me on (or over) the
    	edge.
    
    	My prayers for your daughter, you, and your family.
    
    	Scott

    I hope everything turns out well for your daughter.
    
    I will offer my prayers for her and you.
    
    
    Bernie

    Hi!  I want to wish you the BEST of luck!  My prayers are going out to
    you in hundredfold!
    
    I am Estelle, Tommy's mother (Womannotesfile 754), and Tommy was in
    U-MASS this year for a little over 4 months.  He had a motorcycle
    accident and was taken care of in the Trauma Unit for 3-1/2 months.  We
    were told many times that he was VERY critical and they did not expect
    him to make it.  But, due to the INTENSE care and OUTSTANDING
    technology this hospital has, Tommy has lived.  
    
    His accident was March 17.  He is presently in a home, needs a few more
    surgical procedures, LOTS of rest and then we begin physical therapy! 
    Physical therapy should be about 8-12 months and then we hope that he
    will be able to walk with the aid of crutches and braces.
    
    My point here is NOT to make you feel that your situation is 'not so
    bad' because IT IS BAD!  Supporting a child and dealing with this
    trauma is exhausting.  My only point here is just to let you know that
    I DO UNDERSTAND!!  Short or long term illness for a child has many,
    many side effects and not only medically.
    
    I apologize for rambling on here, however, I KNOW HOW CRITICAL THIS
    FILE WILL BE FOR YOUR SUPPORT.  If you have a few minutes, please read
    some of the responses I received in file 754.  WOW!  That is what has
    pulled me through my ordeal!  I haven't fully faced all that is
    happening to Tommy, but, maybe that's just my way of dealing with all
    this.
    
    BEST WISHES TO YOU AND YOUR DAUGHTER!  I'm sorry this is happening to
    you, but I am reassured that U-MASS is the BEST place for her to be in
    order to received the BEST care.
    
    As hard as it is you must also take care of you.  For when she comes
    home you need to be refreshed, strong and ready for the role you are
    about to face.
    
    DO NOT HESITATE TO LEAN ON ME!  All we have in this worls is one
    another.
    
    Regards & God Bless,
    
    Estelle

    hugs to you wendy, and your daughter...and all the warmth and positive
    energy and prayers I can find.
    
    cheryl

    
    Wendy, my thoughts and prayers are with you and your daughter.
    Take care...god bless.
    
    							Hank

    And more prayers.
    
    Try not to spend so much time worrying because you love her that 
    you forget to spend time loving her because you love her.
    
    I'll keep you in my thoughts and prayers.
    
       Margaret

    Wendy, my support and prayers are with you too. A couple of years ago
    my daughter (now 13 then 9) had a lump on her neck.  She ended up at
    Children's Hosp. for an operation and found it was a vascular
    malformation which she was born with but didn't appear until she
    started taking clarinet lessons.  Anyway, my point is, I know exactly
    how you feel.  The nervousness of not knowing for sure if it's benign,
    not knowing if they will be able to take care of it and not knowing
    what will happen.  Wendy, have faith in the Dr. and most importantly in
    God.  If you have your faith, God will get you through this whole
    ordeal.
    
    Hugs,
    Mary
    

    Thank you all.  All this emotional support is what I wrote for. 
    (Estelle, I did read about Tommy, and that is what prompted me to
    write)
    
    I should put a more personal face on this.  My daughter's name is Beth
    (Elizabeth Ivy) 5' 2 1/2" tall, with dark brown hair she can just about
    sit on.  The two things she worried about most when I told her about
    this were hair, and IV's.  She has been assured that she will have a
    central line (she has tiny, deep veins...torture to find) and only part
    of the back of her head will be shaved, and Mom (me) will learn to
    French braid over it.
    
    She has been in UMASS before.  For the first brain surgery 9 years ago
    (There is something peculiarly wonderful/horrible about pedi-ICU).
    And last year, when, 3 days after getting a paper cut she was in
    emergency surgery for infection and spent 8 days on IV penicillin.
    
    She then said never, never, never again would she go to the hospital
    and have surgery.  So I am so amazed she is taking it so well!  I
    dreaded telling her so much.  I put it off for two weeks (until her
    appointment with the neurosurgeon).  I couldn't sleep or eat (much,
    migraine sufferers like me know we MUST eat regularly).  I thought she
    would flat-our refuse, or run away, or whatever.  She just cried a
    little and accepted it.  Whew!
    
    I hate being strong.
    	No, that's not right.
    
    I hate knowing how strong I am.
    	No, that's not right either.
    
    I hate the process of discovering my strength.
    	Yes, I think that's right.
    
    I only feel what I can stand to feel, it seems.  When she was 3, when
    she was in UMASS, the whole time I felt as if it were not here-and-now,
    but something that had happened decades ago, and I was just
    remembering it.
    
    Afterwards, people would say things about how great I was to be so
    strong and not fall apart.  But, did I really have a choice?  Maybe I
    don't take praise too well.
    
    And sympathy makes me crack around the edges.  But maybe I need to
    crack around the edges a little.  Sometimes.
    
    Thanks everyone.  I knew I could count on you.
    
    /Wendy

    wait a minute, Wendy, here're some more warm wishes and hugs.  I'll be
    keeping you both in my thoughts.
    
    Sara
    

    Hi Wendy,
    
           I'm so sorry to hear about the pain and worry you're going
    through with your daughter. I'm also so very sorry for your little
    girl, but she sounds like a wonderful and strong little girl! so have
    faith she'll pull through you'll see! 
           You know, as soon as I started reading your note, I knew it was
    you, because I remember You talked about her to me when we worked
    together in the RA90. I trully hope that everything turns out well for
    both of you.
           It was very nice running into you the other day, take care
    I'll be thinking of you both.
    

    Wendy,
    
    My heart goes out to you and your daughter.  My prayers are with you
    both...I wish I could do more.
    
    Mega hugs,
    
    -Dotti.
    
    

    Wendy,
    
        In my previous note I meant to ask you to let me know when she's
    able to have visitors after the surgery I'd like to visit with her.
    
    Lisa

    Wendy, I understand exactly what you mean about strength.  Me?
    Personally, I hate *needing* the strength.  And I think "I'm just doing
    what needs to be done; anyone could do this."  Then some good, loving
    friends said "Says who?"  Yes, you did have a choice, and you made it. 
    You chose to cope.  That is no small feat.
    
    I have mentioned this many times in many conferences.  I will mention
    it again because it helps me, and I now know I am not very unique.
    The Serenity Prayer really helps me a lot!
    
    The long version:
    
    	God (or whatever) grant me the serenity to accept 
    		the things I can not change...
    
    	the courage to change the things I can...
    
    	and the wisdom to know the difference.
    
    
    The short version:  (this is not what everyone considers the short
    version, but I don't like to swear!  (*8   )
    
    	
    	Lord, let not my thoughts disturb my peace of mind.
    
    
    The desperate version:
    
    	God, give me serenity.  *NOW*
    
    
    i don't know if these will help you or not, Wendy; I hope they do.
    
    
    E Grace

    Wendy,
     Here a some warm Southern hugs,,for you and your family.
     Hang in there,,from all I've seen in this file you've got
    one of the best hospitals and THE best support group possible
    for the situation.
    
     
    Doug  
    

    Wendy, 
    
    Please let us know when cards might be appropriate, to help cheer her
    up during recovery.  Again, hugs for you both!
    
    Linda

    
    
    	Dear Beth, my prays are with you and Beth and may God bless you
    	both.
    
    	Below I wrote ina  pray that I often say when I need Gods help
    	and reassurance, I hope some how you will find comfort in it.
    
    
    	May the sacred heart of Jecus be adored, glorified, loved and
    	preserved throught this world now and forever.
    	Sacred heart of Jesus pray for us
    	Saint Jude worker of miracles pray for us...
    
    	You say this pray for seven days, nine times a day and by the end
    	of the seventh day god answers your pray.  It has *always* worked
    	for me when I am in need.
    
    	*Lots of Hugs*  
    
    	Zina
    

    Here's how things are scheduled right now.  On Sept 12, I take Beth in
    for her pre-surgery check-up.  Then, on the morning of Sept 18, I bring
    her in to the hospital, and she has the surgery right away.  After
    surgery she will go into intensive care, for one, maybe two days.  If
    she is doing well enough she will go into a regular room, and should be
    in the hospital for about a week, if all goes well.  I suppose if she
    catches a headcold they may postpone surgery until she is better.
    
    I will be living at the hospital while she is there.  (Lisa, I will
    call you and let you know when she is ready for visitors)
    
    Right now, Beth is still doing very well, and enjoying seventh grade.
    
    Thanks again everyone!
    /Wendy

    Wendy,
    I'm glad that you have a schedule to work with.  For me, an unbounded
    stretch of unknown/stressful stuff is far worse than one with limits.
    I'll be thinking of you and Beth, and sending hugs thru the blockade.
    
    Sara
    
    p.s. contact address for cards?

    Wendy,
      More hugs and positive energy and warm thoughts coming your and
    Beth's way from me as well.  I'm in NH, but if there is anything at
    all I can do, please contact me.  Take care.
    
    bright blessings,
    -HA

    From one who has been there ...
    
    My heart goes out to you.  I can understand your daughter's attitude. 
    It seem that the person who is ill takes it much easier than those who
    are family, friends and/or lovers.  I think it might have to do with
    being so busy coping with all the changes happening you don't have time
    to think about mortality ...
    
    I pray that all goes well for you and your little girl.  Keep strong
    and don't lose faith!
    
    Many hugs,
    
    Tammi (Washington, DC)

    Wendy,
    Here are alot of hugs for you.  I will keep you and your daughter in my
    prayers.
    
    Karen

Wendy - 

I can hear your frustration and fear along with your incredible love for your
daughter.  Allow yourself to feel whatever it is you feel without cencorship.
This is a very difficult time for you and all of your family as well as for
your 12 year old.

Prayers and light go with both of you...

Be kind to yourself,
Nanci 

    Wendy
    
    Scotland is far away but somehow I feel right beside you.
    
    My sister had an eye tumour (near to the brain) and it was not benign.  
    She went through radiation and lazer treatment and not only has the 
    tumour gone, she still has her eye (with moderate sight in it) and this 
    is three years on. 
    
    She also has MS which was diagnosed a year before they found the tumour
    (both are totally unconnected) and she will not give into that either.
    I prayed my heart out for her and will do likewise for your daughter.
    She too will pull through this - you wait and see!
    
    Liz
    
    
    
     

    Two days to go...
    
    She had her presurgical physical last Thursday.  It all went well
    except for the blood test part.  She balked.  Refused to cooperate. 
    The anesthesiologist (sp?) made a deal with her that if she would let
    them look for vein, and they sprayed some freezing stuff on before
    putting the needle in, she could go to sleep with gas on Wednesday and
    not have to be awake for any more needles.  But after tapping here and
    there they found only one potential vein and decided to save it for an
    IV and do the testing in the hospital on Wednesday morning.  
    
    This morning she was coughing for the first half hour she was awake,
    then she was fine.  I believe this is the remnants of a cold she had a
    couple of weeks ago, but I put a call in to the neurosurgeon to discuss
    it with him.  Beth doesn't want to postpone the surgery.  I am feeding
    her lots of vitamin C.
    
    I need a volunteer to be a contact person for this file.  Wednesday, at
    7:30AM she checks into the hospital.  Surgery starts at 9:00AM.  It
    will take anywhere from 4 to 10+ hours.  Afterwards I will be making
    LOTS of phone calls and I need someone within local calling distance of
    Worcester to put an update in here.  Thanks in advance.
    
    Beth is still doing well emotionally.  The only thing she seems worried
    about is needles.
    
    I have been rather withdrawn lately, which is why I haven't written
    much.
    
    We had a good time at the Big E on Saturday.  I had my kids portraits
    done by the woman near one of the entrances of the Better Living
    Center.  Beth and her little brother Rob.  It's hanging in my office
    now.  They are so beautiful.
    
    Thanks for everything.
    
    /Wendy  

    Hugs Wendy,
      You can tell your daughter that grown ups hate needles too!  I turn
    positively *green* at just the mention of them myself! ;-)
    
      Good luck on Wednesday, I'll be thinking of you, and checking in here
    to hear any news.  I'd offer to be your contact, but alas, I'm in NH
    (although I work in Littleton, which I still think is not a local
    call).  But, if there is anything I *can* do, please let me know.
    Take care, and give your daughter some gentle hugs from me.
    
    bright blessings,
    -HA

    I'm even worse!  I pass out at the mere sight of a needle!  )-:
    
    Wendy,
    
    If you need a Boston contact, I'm at 524-5770 (dtn 281)
    Please call, even if you just need a hug.....the hospital
    is not that far away from this plant...
    
    Lynne

    Wendy,
    
        I can be your local contact if you would like, I'll be sure to let
    everyone know how your daughter is doing.
        I pray to God that everything will turn out the way you want it to,
    and that He'll give you the strength you need to go through it all.
    
        You'll both be in my thoughts,
    
    Lisa

    Wendy-
    
    I'm sorry.....I read your .0 message and thought she was
    going to be at Mass instead of Umass Hospital.
    
    Still, if you want to call...
    
    Lynne

    Wendy,
    
    Good luck with the surgery tomorrow.   I hope and pray everything
    goes well.
    
    
    Bernie

Wendy, my thoughts are hovering...  

    
    Wendy, My mother sent this to me once,now it belongs to you:
    May you find hope in moments of crisis and strength to maintain courage
    in adversities toughest battles. May your every wish and and sincerest
    dream be overshadowed by successes limited only by your imagination
    and visions of not what you have done but more importantly, what you
    are capable of doing.
    
    Good luck to you and your daughter, you have all of us pulling for you!
    And with all this support you can't you can find comfort
    
    Sandy
    

    
Elizabeth Carboneau
5th Floor
UMASS Medical Center
55 Lake Ave. North
Worcester, MA 01655

Pediatrics is on the 5th floor.  She may not stay in the same room the whole 
time, so "5th Floor" should get to her.

    
    Wendy--
    
    	Hugs and energy to Elizabeth, hope she sails through the operation.
    I'm glad you had a wonderful time at the fair, I'm sure that the memory
    of good times shared will help her to carry her through.
    
    	Hugs to you, to help you cope.
    
    Debbi

    Just heard from Wendy, here are the highlights of the outcome on 
    Beth's surgery.
    
    Beth was in surgery from 9:00am to 5:30pm, they removed a tumor the 
    size of a golf ball but they could not remove it completely because
    it was attatched to the brain stem. She hasn't regained consciousness
    as of 8:00am this morning, She went for a cat scan in the middle of the
    night and there were no signs of blood clots or anything else that
    might risk Her having to go back into surgery.
    
    Wendy talked to the neurosurgeon this morning and he thinks its because
    of the swelling that she hasn't regained consciousness and he said that
    it could take up to a week for Her to do so. By the end of today He'll
    decide whether he is going to put a tube into the brain to relive the
    pressure.
    
    I'll try to keep you all posted on any new developements.
    
    Lisa

thinking healing thoughts, very hard... 

    real quick update...no time to read replies or fix typos
    
    I am home to feed the animals, then I rush right back to the hospital.
    
    Her vital signs have been good, but her neuro signs were worsening this
    am..  Anothe ct scan, then back to surgery to put a tube iinto the top
    of her head to drain out air which got in during surgery ( this is
    normal ) and fluids which were not draining properly.  Scar tissue fron
    lastr surgery may be blocking normal draining of fluids.
    
    Hopefully she will finally wake up this pm
    
    more news when I can.

I'm praying for you both.

     Much love,

          Carol

    Hello Everyone,
    
        We have some good news on Beth!!!!!!!! I had a phone message
    from Wendy sent sometime yesterday afternoon saying that Beth was
    starting to come around I believe it was around 3:00pm.
        She also said that its looking real good although it might take 
    Beth some time to completely wake up.
    
        More news as I get them.......
    
    Lisa

    Thank God, Beth is starting to come around.    My prayers and hugs for
    a complete recovery.
    
    
    
    Bernie

    Keep on praying real hard everyone.  I am.  Hugs and love to the
    family.
    
    Mary
    

    Wendy,
      Prayers for Beth - Hugs and warm wishes to you and your family.
    
    
    bright blessings,
    -HA

    Many many prayers and healing thoughts.
    
      Margaret

Many, many healing thoughts to Beth!  Wendy - support and strength from one
Mom to another.

hugs to both of you,

Nanci

    Wendy, I know so, so well what you are going through.  Hang in there! 
    I'm sending as much strength and hope that I can muster.  Prayers,
    bright blessings and the sincere desire that all turns out well are
    also on my list of feelings for you and your daughter.
    
    God Bless my friend,
    
    Estelle
    
    

    warm healing thoughts don't know weekends, Wendy.  More hugs for you
    and Beth and all your family --
    
    Sara
    

    Home to feed animals/water plants again
    
    Beth continues to improve.  They got her off the respirator yesterday
    evening.  She sleeps a lot, but it is normal sleep.  She still has not
    spoken.  I choose to believe that she chooses not to speak (this is a
    defense tactic of hers of long standing) and that she will soon.  She
    is still in ICU and will remain there, probably through the weekend.
    Lots of plumbing...a tube in her neck in a vein, a tube in her wrist in
    an artery, a tube coming out of the top of her head to drain excess
    kObrain/spinal fluid, and a catheerr (please excuse line garbage if
    visable) Wiring too...heart and respiration monitors.
    
    She was watching cartoons a little this morning, and even reading
    comics in the newspaper while I helped her hold it!!!
    
    She is making small steps forward, no steps backwards.  (!!!)
    
    I am eating 3 times a day and sleeping at night.
    
    Gotta get back to the hospital.
    
    Thanks all!!!!
    
    /Wendy
    jF

    many many hugs and good wishes, Wendy.
    
    	Please take some hugs in to Beth - I have it on good authority that
    the sound of hugs giggling in the bedclothes is good medicine!
    
     E Grace

    That's most heartening, Wendy.  Tell Beth that there are a lot of
    encouraging smiles around for her until she feels up to hugs.
    
    						Ann B.

    She's still in intensive care, but they removed the drainage tube from
    the top of her head this afternoon.  Now we can crank the bed up and
    she fed herself supper - wouldn't accept any help!  She can be more
    mobile now.  Don't know yet how much she will be able to do, and how
    much will have to be relearned.  Also, I am now nervous about the lack
    of a drainage tube...will the fluid build up in her head and a
    permanent shunt need to be installed???  They (and I) are keeping a
    close watch on her.  As she is awake more, it is harder to tear myself
    away.  Therefore, this midnight run home.  She might leave ICU
    tomorrow, maybe.  It would be nice, but also worrysome because she
    would not be so closely monitored.
    
    She still has not spoken.  But she can communicate when she chooses. 
    Sometimes she stares ahead with an obstinant look on her face.  But
    most of the time, she can be pursuaded to giggle.
    
    Back to the hospital I go....
    
    /Wendy

    She seems to be progressing very nicely.  
    
    Don't anticipate problems, they'll find you soon enough.  Take every
    morsel of improvement and savor it till the next one comes around.  Set
    backs are just that, set backs, till more morsels of improvement begin
    to come more often and in larger chunks.  Don't ignore the negative,
    just deal with it when it comes, and try (as hard as this is) not to
    anticipate it.  All the worrying in the world will not change the
    future.  
    
    From all that you say, this little soldier of yours is in for the
    fight.  And we are all here praying, hoping, crying, worrying, and
    sending good vibes to you both 24 hours a day!  
    
    I have a strong feeling that the worse is over.  I pray that I am
    right.  
    
    God Bless from one who knows,
    
    Estelle
    
    

    Hello Everyone,
    
          Heard from Wendy once again, Beth is out of intensive care and
    doing better, progress is slow but she is going forward.
          Wendy expects Beth to be in the hospital for about another week.
    
    More as it comes.....
    
    Lisa

    I'm glad to hear the latest news regarding Beth's condition. More
    prayers, warm thoughts & hugs, coming your way...
    
    Bonnie

    What's the latest on Beth anyone know?
    

    Beth has been in a regular hospital room for about a week now.  She is
    now allowed out of bed, but is a long way from being able to walk. 
    She's a long way from being able to stand without assistance.  She is
    being seen by both physical and occupational therapists.  Her right
    side is very weak, moreso towards her trunk.  That is, she has a good
    strong grip and can wiggle her toes just fine, but can barely lift her
    arm or leg.  When held in a standing position, her right knee won't
    stay straight.  Balance is not good.
    
    She talks a little, but not much.  She has admitted to me that she is
    having trouble thinking, and would speak more if she could, but she
    doesn't know why she can't.  She did not come right out and say these
    things, she was answering my questions.  She can read words just fine;
    she read out loud to me.  But this bookworm who was reading a book a
    day pre-surgery, will only stare at a page, or just a cover of a book.
    Perhaps she is having trouble processing information.  She will spend
    hours staring at her left hand if not distracted.
    
    A decision has not yet been made about a permanent shunt.  She was
    supposed to have another CT scan today but it didn't happen.  Tomorrow,
    I guess.  I hope they're not hauling her out of bed to do it tonight!!
    
    A radiologist stopped by to talk to me today.  There is a high
    percentage probability that she will require radiation treatments to
    kill what's left of the tumor.  I haven't gotten around to spending too
    much time worrying about that yet.  Maybe later, when I've cleared some
    of my current worries off my agenda.
    
    Still no idea when she will get out of the hospital, or where she will
    go from there.  She may need to go to a rehabilitation place.  I would
    really love to be able to have her home with me, but unless there are
    sudden dramatic improvements, which I have no reason to expect, I just
    don't know, don't think, I am physically capable of taking care of her.
    When she was three, and went through this, she was at least portable. 
    Now, she is nearly as big as I am, and her condition is more
    complicated this time.
    
    I take her around in the weelchair to the playroom, etc. when she is
    not busy with therapy or doctors.  But is it hard to get her
    interested in much.
    
    I think it's supposed to be nice tomorrow (?) so I may try to take her
    outside for some fresh air and a change of scenery.
    
    I gotta get back to the hospital now.  
    
    /Wendy   

    Wendy,
    Thank you for the update.  Lots of hugs and prayers for you!  
    
    Karen

Wendy, I'm glad to hear from you.  Many hugs and warm thoughts to you and Beth

Sara

    Wendy,
      Thank you for the update, it's good to hear from you.  I'm sending
    lots of prayers and hugs and warm thoughts your way and Beth's!  Take
    care.
    
    bright blessings,
    -HA

    Hugs & Prayers, Wendy!
    
    Lynne

    Lots of healing hugs to you both.


				Terza

    Special gentle hugs.  Just thinking about this in terms of my daughters
    gives me the willies.  
    
    'xtra hugs for whenever you need them
    jimcjimc

    Wendy,
    
    Lots of hugs and prayers.
    
    
    Bernie

Warm thoughts and good wishes for you both.

If I can presume to give you a piece of advice - be sure to take time
for yourself too.  You will need extra strength for the long run, so
do something nice, and totally un-hospital-related, for yourself now 
and then.

Ben

    Wendy:
    
    My God I hear your concern, feel your pain, and still there are no
    words to give you the comfort that you so richly deserve at this time. 
    
    I guess since I went through a trauma with my son not so long ago all
    this is still so fresh in my heart and mind.  Tommy has been in the
    hospital since March 17 of this year and will probably be in till at
    least the end of the year and believe me, I know, God do I know.  But
    nothing and no one can fully understand what we are feeling at the
    time.  I do know however, that this is ALL CONSUMING, but at least try
    to rest, even if its a fitful rest, keep trying.
    
    I'd love to go to the hospital sometime soon just to meet you and stay
    with you and your daughter awhile.  I'm from New Hampshire but I've
    done the trip a thousand times since March 17.  Tommy was at U MASS
    too.  I felt it was a GREAT HOSPITAL and still feel that way.
    
    I guess the best I can do is to continue offering my prayers for now. 
    Be kind and gentle with yourself YOU DESERVE AND NEED IT!  
    
    God Bless you my friend!
    
    Estelle
    

    
    Warm hugs and healing wishes to you both.
    
    Jamd

    quiet, needing to be on the outskirts on this one, hugs Wendy.
    
    E Grace

    Thanks for the update Wendy.  My prayers are still with you.  God is
    with you. 
    
    Hugs,
    Mary
    

    I can't believe how much better she has g5*notten in the past two days!
    (wow, lots of line garbage tonight-pretend everything is spelled
    perfectly, please)  Yesterday morning she woke up very bright and
    alert.  Not quite 100%, but a large improvement.  She had been working
    with a physical therapist on walking with a wlaker, and was doing
    okay.  BUT, we both lay down for a nap in the afternoon, and when I was
    asleep, she got up (!), walked to the bathroom(!!), then fell, hitting
    her head, straight on the area of the surgery on the edge of the sink.
    Don't worry!  No damage!  She was crying (even that was good to see,
    she had not cried yet, and she is normally a very emotional person
    {wonder where she gets that from?}) and her head did hurt...but...WHAT
    AN ACCOMPLISHMENT!!!  We had her word that she would do no such thing
    again, but she got up again in the middle of the night, but this time
    tried to take the walker and the noise of it woke me up.  So, unless
    someone is with her, now she has to be secured.  She understands why
    and doesn't fuss about it.  It seems to be only when she just wakes up
    that she tries these stunts.
    
    And she's talking better, and starting to do things like read and
    color.
    
    She will still be going to a rehab place.  Probably Franciscan's
    Children's Hospital.  Anyone have any experience of the place?  But it
    won't be for as long as I had originally feared.  I will not be with
    her so much there, because she will be kept very busy, and she works
    harder without me around anyway.  I say this so calmly, as if it won't
    be wrenching, I'm so wrapped up in her now.  But I also realize we
    probably need to break away a bit.
    
    I am still not thinking about radiation.  Did I remember to say that
    the pathology was benign?  The radiation is because the location of
    the tumor made it impossible to remove it all.
    
    She is more ready for visitors now that she is interacting more.
    
    I am very very tired tonight.  I have to get back to take over for my
    sister who is Beth-watching for me.
    
    Thank you all for all your prayers and warm thoughts.  I am sure they
    have helped.
    
    /Wendy
                                                        

   Wow!  Thanks for the update, Wendy!  You must be tired.  But all sounds
   great!

   Take care of yourself, and Beth, too!

   Hugs!

   							Terza

    Hi Wendy,
      What wonderful improvement!  I will pray that Beth's recovery
    continues to progress al.  I hope this progress continues at this
    speed!  Take care of yourself and get some rest!  Hugs!
    
    bright blessings,
    -HA

    
    Wendy--
    
    	Great news!  Well, not the bump on the head...but everything else!!
    
    Warm, positive thoughts winging their way!!
    
    Hugs,
    
    Debbi

    Wendy that is wonderful news!  
    
    the hugs keep happenin'
    
    Sara
    

    	Wendy,
    
    	Great news about Beth.
    
    	When I read that she fell, my heart (almost) stopped and
    	I got pins and needles all over. I'm glad the fall didn't
    	do any damage.
    
    	Scott

    Wendy:
    
    WOW!!  Terrific!!  Super!!  Wondeful!!  Exciting!!  Mind-blowing!!
    
    Thank GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    
    Estelle
    

    Beth's CT scan this morning (at the crack of dawn) showed things to be
    stable, so she should be released to Franciscan's Children's Hospital
    any day now.  This is supposed to be a good place, I hear.  Only
    children.  The only drawback is it's distance from my home.  It's in
    Brighton, part of Boston, right off the Mass Pike.  I live about a half
    hour south of Worcester, and am allergic to both cities and highways.
    But, it's the best place around for her.  I will stay with her at
    first, but will try to wean away.  I think she will be too busy for me
    after a while.  I don't know how long she will be there, but it may not
    be very long (I hope).
    
    This afternoon she had more trouble walking, and seemed a little out of
    it, but I think it's because of being gotten up so early, and then
    doing so much in the morning.  Otherwise, not too many changes lately.
    Looking forward to a better day tomorrow, after a good night's sleep.
    
    Back I go...
    
    /Wendy

    Wendy,
    Sending warm, loving thoughts your way.  I am *VERY* pleased to here
    about Beth's continued improvement.
    
    hugs,
    karen

    Wendy,
    
    Delighted to read about Beth continued improvement.   Thank God,
    everything is going good.   Don't worry about the new hospital,
    as you say, it is a good hospital and she might not be there for long.
    
    Many hugs and prayers for Beth, you and all your family.
    
    
    
    Bernie
    

    Wendy,
      I too am glad to hear of Beth's continued improvement!  Give her
    big hugs for me the next time you are there.  Sorry you will have
    to travel so much to be with her, but perhaps the time will be short.
    Many hugs, warm thoughts and wishes winging your way!
    
    bright blessings,
    -HA
      

    
    
    	Wendy, 
    
    	I've been following Beth's story but haven't replied till
    	now.  I'm very happy to hear that Beth is feeling better
    	and making progress.  Best wishes to you and your daughter.
    
    	JJ
    

    Can you post the adddress of the hospital for cards for Beth?
    
    I spent 3 weeks in a hospital about 4 hours away from my family when I
    was 15.  Mail was essential to me.  It was hard enough trying to get
    better, and the loneliness made it that much harder.
    
    After I left the hospital I spent the next 6 months flat on my back in
    a full body cast (this means torso only), and mail still helped.  One
    woman sent me a card *every* week, and usually included some little fun
    thing in it to cheer me up.
    
    Attitude is everything in getting better.
    
    My best to you and Beth.  Now that I'm a parent, I can only imagine how
    hard it must be to have an ill child.
    
    judy

Wendy,

I'm thrilled to hear about Beth's progress!  Best wishes to both of you!

Nanci 

    Wendy, just want you to know we are still praying.  I really don't have
    time to read the rest of the notes in this file.  I log on just
    specifically to see what is happening with you and Beth.  Please post
    the address when you get a chance.
    
    Hugs,
    Mary
    

    Beth's progress is very up and down.  Since the steroid she was on has
    been lessened, then discontinued, her condition is not as good as it
    was a week ago.  She can no longer walk with assistance for more than a
    couple of steps.  Sometimes she cannot hold up her head.  Sometimes she
    is very confused.  She was seen by the head of neurosurgery at
    Childrens' Hospital in Boston yesterday.  He says keep monitoring
    closely, but probably no shunt.  Whenever I think it may become easier
    to break away from her side, it becomes more difficult.  Still waiting
    for her condition to stablize, then for her routine at the hospital to
    keep her busy.  Meanwhile, I need to replace my car, as mine died. 
    Anybody live anywhere near this hospital who works in SHR?  Maybe I
    could get back to work soon, as long as they don't care how I look. 
    
    I don't have the address with me.  It's Franciscan's Childrens'
    Hospital, I *think* it's 30 Warren St, but I'm not sure, in Boston. 
    No idea about the zip, sorry.
    
    

    Wendy,
    
    My heart goes out to you and your daughter. I haven't written in here
    before because it just hurt too much to think about what's happening to
    both of you. Writing about it was like getting one step nearer to your
    hurt. 
    
    There's nothing I can do but send you my warmest and friendliest
    regards. The sickness of those dearest to us always seems more than we
    can stand; one day you'll turn back and look at what has happened and
    marvel at how strong you were in those circumstances.
    
    This is not a subject I can be coherent or articulate about, but I
    think of you and your daughter every day.
    
    Take care,
    Joana

    Beth is now walking with a walker, very well.  She is really bright and
    alert, and even starting to initiate speech!!  Yesterday she worked
    really well for her therapists.  She can lift her right arm over her
    head, and doesn't need to be reminded that it is there for her to use
    it.  She got herself dressed this morning!  We have her sleeping with
    her head well elevated so there is not too much fluid building up, and
    perhaps her system has resumed producing hydrocortisone (The recent
    downward trend must have been due to coming off the decadron (sp?), a
    steroid).  We're all thrilled to pieces and applauding her constantly,
    for standing up without help, and every single little thing she could
    not do two days ago that she now can.
    
    We're not expecting any more setbacks now (please, please!!).
    
    'S'funny how much better I feel now!!  How much energy I suddenly have
    too.
    
    Oh, she's in room 223.  Still don't know the zip.
    
    /Wendy
    

    Wendy,
      What *wonderful* news!  I'm sooooo happy to hear of Beth's
    tremendous progress over the past few weeks!  This is great!
    Thanks for taking the time from your very busy schedule to let
    us know how she is doing!  Hugs to you, and give Beth a hug
    from me if she can have them yet!
    
    bright blessings,
    -HA

    Wendy,
    That is wonderful news!  Congratulations to Beth!  Many warm hugs!
    
    Karen

    
    Wendy--
    
    HUGS  to you and Beth!  Hope she continues on her road to health!
    
    
    Sending more positive energy,
    
    Debbi

Wendy, a few huggahuggaHAPPYhugs for you and Beth and all your family -- that's
really great news!

Sara

Hooray!  I'm so happy to hear your good news, Wendy!

Give Beth a hug for me and save some for yourself!

You're a great Mom!

Nanci 

    Great news Wendy!!!
    
          I new Beth would pull through! It was just a matter of time.
    Its wonderful She's as much of a fighter as You are!!! Hope with all
    my heart there aren't going to be anymore setbacks. Keep a positive
    mind and tell Beth I'm thinking of Her and You! of course.
    
    Lots of hugs to You both,
    
    
    Lisa

    Wendy, I've been thinking of you and sending positive vibes your way. 
    May love keep you and Beth and all your dear ones strong...  HUGS

Wendy I'll be off the net after today, for a week, but the hugs will find their
way anyhow -- I'll fit 'em in!

    Hello Everyone,
    
    I just heard from Wendy this morning and the news aren't good.
    Beth had to go under emergency surgery, I didn't quite get the 
    time but I believe it might have been during the night or early
    this morning. She said Beth is at very high risk!!!
    I was so shocked by the news that I didn't get the reason for the
    emergency surgery if Wendy happened to mention it. All I could think
    about was what Wendy must be going through right now, its more than
    any Mother should have to bear.
    I will post any further information as soon as I hear anything, let us
    all say a prayer for Beth and hope that she will pull through.
    
    
    Lisa

    praying.
    
    Hugs to you, Wendy if you read this, and pass some on to Beth for me.
    
    Alice T.

    My prayers, hopes, and good thoughts all being radiated toward Wendy
    and Beth.  
    
    Kim

     Love and hugs to Wendy and Beth.  -- Terza

    Warm thoughts, bright light and many hugs Wendy and Beth.  Keep us
    posted, we care.  Hugs.
    
    bright blessings,
    -HA

    Hi, 
    
      I heard from Wendy just now, Beth has made it through surgery.
    
    Thats all she could tell me, that's all she knows for the moment
    She hasn't seen Beth yet but at least we know that she made it
    through surgery, now, there's some incouraging news!!!
    
    More as it comes.
    
    Lisa

    That's amazing, wonderful! What more can I say?
    
    		8-)	8-)	8-)	8-)
    
    Alice T.

    Thank God, Beth made it through surgery.
    
    All my prayers and hugs for Beth and Wendy.
    
    
    
    Bernie

    My prayers are still with you Beth and Wendy and the rest of the family
    too.  I believe in the power of prayer.
    
    Hugs,
    Mary
    

    Hi,
    
      Good news! Beth is out of ICU and back in her room, She's awake
      and very alert.
    
    Lisa

My prayers and positive thoughts are with you, Wendy, and Beth.

hugs,
Nanci

    I'm sending lots of positive thoughts and energy your way...
    
    Best wishes,
    
    judy

    AMEN, thank you God.  But I'm still praying for a speedy recovery.
    Hugs,
    

    I can't log in and read as often as I'd like, but when I read that Beth
    had to go back to surgery, my heart hit my toes.  The stress that Wendy
    is dealing with is incredible.  The many messages that we all send her
    will support her more than you all know.  So let's keep the synergy
    going.  I know I really don't have to even say it, but, having been
    where Wendy is right now, it's just my way of re-enforcing what I know
    the notesfriends will do!
    
    Wendy, do try, as best as you can, to take care of YOU too!  Not easily
    done right now, but give it your best shot.
    
    My prayers for you both continue.
    
    God Bless,
    
    Estelle
    

    Wendy, Beth - You continue to be in my thoughts and prayers.  Sending
    more warm thoughts, wishes and hugs your way.
    
    bright blessings,
    -HA

    And more prayers.
    
    My spirits went thud when I read that Beth was in surgery and then
    soared a few notes later at the news she was out of surgery.  And then
    a few notes later, when I read she was in her room again and awake,
    well! My soul danced for joy and set a milion prayer wheels spinning
    for Beth.
    
       Margaret

    
    Wendy,
    
    	Blessings and positive energy winging their way to you and Beth.
    
    Love and hugs,
    
    Debbi

    At about 1:00 AM last Tuesday night (Wednesday morning) Beth's pulse
    shot down and her blood pressure soared and she vomited (all signs of
    increased intercranial pressure)  The neurologist at Franciscan's
    called Beth's neurosurgeon who said to send her by ambulance to
    Children's Hospital to make sure she was stable enough for the trip
    back to Worcester, or if not, stabilize her.  At Children's her pulse
    was in the 70's so we took another ambulance to Umass.  We got there
    just after 5:00 AM.  I didn't realize at first just how bad her
    condition was, but I talked to her neurosurgeon on the phone then and
    he said he had a procedure to do from 9:30 to 3:00 and he didn't think
    she could last that long so the neurosurgeon on call was going to do
    the surgery (put in a shunt).  Then a minute later a nurse was on the
    phone to him and he told her he was on his way in to do the surgery
    himself.  Meanwhile, I was watching Beth's heart rate dip down into the
    low forty's, and I could *feel* death nearby.  I don't know how else to
    describe it.  They got her prepped for surgery, then took her from the
    emergency room to pre-op, where they gave me papers to sign.  In
    between when I kissed her good-bye and they wheeled her away, one of
    the anethesiologists took me aside to tell me that he wanted to make
    sure that I understood that she could die.  That with her high
    intercranial pressure she was at "high risk", her heart could stop as
    soon as they gave her the anesthetic.  That when I signed the permission
    I was absolving him of any blame if anything went wrong.  I kept
    pointing out that without the surgery she would surely die, and soon,
    but he kept saying that if she died it would not be his fault.  I
    already *KNEW* how close she was to death, with out his telling me, but
    his self-concerned way of "preparing" me made me very angry later.  But
    then it scared me.  Terrified is a better word.  But still not quite
    strong enough to convey what I felt.  
    
    I went upstairs to the 5th floor, crying.  I called Lisa to put the
    news in here, but I was not quite coherent probably.  I cried harder
    than I had since I was a child, for about 45 minutes, so afraid they
    were going to come in the door any minute to tell me they lost her. 
    Then I calmed down a little and cried more quietly and intermitantly
    for the next couple of hours.  The doctor told me the surgery would
    take 1 to 1 1/2 hours, so when it passed 2 hours I started worrying all
    over again about what had gone wrong that was taking them longer. 
    finally, at 10:00 (she went into OR at 7:00) the neurosurgeon came and
    told me that everything went just fine!!  I could go see her in
    recovery when she woke up.
    
    After she woke up I went down to see her, and IT WAS HER, IT WAS BETH,
    ALL OF HER, THE WHOLE PERSONALITY WHICH I HAD NOT SEEN IN FIVE WEEKS!!!
    !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    She had been like a person who had had a lobotomy because the pressure
    from the back of her head was exerting pressure towards the front,
    showing up al slowed activity on an EEG.
    
    She is still recovering slowly.  She got up and out of bed on Friday,
    which turned out to be too soon for someone who has had such high
    pressure for so long,  She vomited all day long Saturday, and I asked
    them to call her doctor but apparently they only called the resident
    who was on that day because when her neurosurgeon stopped by Sunday
    morning he knew nothing about it and he order complete bedrest with the
    head of the bed no higher that 45 degrees.  She was much better after
    that.  Today she can be slowly raised again, more slowly.
    
    She is no longer passive, or speaking only when spoken to, or taking
    needles without flinching, or voicing no opinions, or any of that.
    She is opinionated, animated, nosy, and itching to get up.  I keep
    hearing "I can do it myself, Mom".  And she can.
    
    Beth is back, and Beth is Beth.
    
    If anyone hears me complaining about life with an adolesent daughter in
    the next 6-whatever years, kick me, okay?  Remind me of what she was
    like when she wasn't herself.
    
    She will probably go back to Fransican's this week sometime.  I can't
    wait to see the looks on their faces when they meet the "real Beth"!
    They never knew her!  Now that the shunt is in and working, she will
    not be there as long as it seemed before.
    
    Thanks for your prayers and warm thoughts.  We needed them.     
    
    /Wendy

    oh, Wendy, phew...
    
    I'm crying...

    	I'm glad the real Beth is back, although, when I first
    	started reading the reply, I wasn't sure what to think.
    
    	My continued prayers.
    
    	Scott

    So relieved.  Thanks for the story.  It must have been horrible but
    glad it has turned out so happy.
    
    Hugs,
    Mary
    

    Wendy,
    What good news!  I cried when I read your note.  Continued prayers for
    Beth's continued recovery.
    
    hugs,
    Karen

    I too sit here with big, huge tears rolling down my face.
    
    What a relief.
    
    Beth with remain in my thoughts.  
    
    judy
    

	Wendy,

    If you haven't read it yet, my hugs to you and Beth are in the V4
    HUGS note.  At the time I first read your update here, I wasn't
    able to reply, so I wrote there instead.

    Strong but gentle hugs to both you and Beth, along with continued
    prayers,

    Debbi J    

YAY!!!

Nanci

    Wendy
    
          Although I have read all the messages with regards 
    to both yours and Beth's situation yet never answered, I would like you
    to know that my thoughts have been with you. I do so hope that from 
    now on all will go in your favor. I would also like to extend many hugs
    to you both.......
    
    
    Rose......
    
     

    Beth left UMASS and went back to Franciscans' yesterday.
    
    Now for the big news:
    
    She has started to walk without holding on to anything!!!!!!!!!!
    
    /Wendy 

    Great News Wendy!  I'm so glad that Beth seems to be getting better
    and back to normal by leaps and bounds!  Give her a hug for me, ok?
    And plenty of hugs for you are winging their way right now!  Take
    care!
    
    bright blessings,
    -HA