Conference moira::parenting

    
    I am struggling with this first sentence...I was recently a bone marrow
    donor for my brother who has been struggling with cancer for 8 years
    (he was in remission for 7 years).  He underwent the transplant last
    December (91), and is doing well.
    
    Has her child under gone a bone marrow transplant (with her own
    marrow)?  Are they looking for a donor?  Will you please keep us
    posted? 
    
    You can't make the cancer go away, but please, please, don't you go 
    away.  I know from my experience that sometimes people stay away from
    you, not knowing what to say or do.  This hurts.  This is the time when
    she needs you.  Let her cry, take her shopping, hold her, do some
    chores anything you can think of to let her know you are there for her.
    It is harder to face when your friends disappear because they are
    scared, anxious etc.
    
    I don't know about her particular illness.  I do know that there are
    many types of leukemia.  Do you know anything more about the type of 
    leukemia?  What hospital is she in?  Is she in Boston?  Can she have
    visitors?  
    
    My brother had Hodgkins lymphomia (8 years ago) and relapsed in 
    January of 91.  He underwent the transplant because the previous 
    chemo and radiation treaments caused his marrow to mutate and become 
    pre-leukemic.
    
    Please give her a hug for me.  My own daughter is 2 1/2 and I can't
    imagine her pain.  I know the pain from a sibling perspective, but have
    watch my parent's pain.  
    
    I'll pray for her.
    
    Rose Marie

    Anna is at the University of Mass hospital in Worcester.  I do not know 
    very much since I only learned about it last night.  I do know she had
    two bone marrow transplants with her own marrow.  I am planning on
    visiting tomorrow.  I will keep you posted.  Thanks for writing, Janet.
    

    This note couldn't have been more timely as we have a neighborhood
    child that has been diagnosed with a brain tumor.  Her surgery is
    scheduled for Friday, and the mother has also spent all of this past
    week in the hospital with her.  
    
    I have been struggling with a lot of feelings as to why this happened
    to her, how much can she take, and what things can I or we, people in
    general, do to help.  The support system has been wonderful for the
    mother as people have already set up a fund to help out with anything
    that she might need.  The mother is encouraging her classmates and
    friends to visit now as we don't know what next week will bring and my
    two children did just that.  
    
    All the things that I want to write, but just can't yet.
    
    Thanks for reading and listening.
    
    
    

    You will be amazed at the strength a person will muster up when one has
    to.  I have a friend who lost her husband Sunday after 14 months of
    fighting cancer.  This woman has grown incredibly in the last year. 
    She is probably taking this better than I am.  Funny, cause we all
    thought she was the one person who was so dependent on her husband for
    her own life!  It's so sad when this disease strikes because it is no
    respecter of persons.  It will take anyone at any time.  Just be there
    for the family and take it upon yourself to do things.  Don't just
    offer - do it!  Mom will not want to feel like a burden to anyone while
    her baby is struggling, but she will need support!
    
    -sandy
    

A 4-year-old boy (at Juli's daycare center) came down with a VERY RARE
type of leukemia (diagnosed in January) and succumbed to it around Father's
Day.  Soooo sad.  Still brings tears to my eyes just thinking about it.

They have a younger son, in Juli's stage group.  Unfortunately, they were unable
to locate a matchable bone marrow donor in time.  They did find some donors
through a national donor network, who were going through the final stages
of screening, but unfortunately the boy's condition deteriorated before 
the transplant could occur.

It's so difficult ... you just don't know what to say ... but SAY SOMETHING!
I remember meeting the mother at the daycare parents BBQ and believe me, 
SHE did want to talk.  She had such high hopes and a strong faith.  She
talked about both her sons with so much love.   Sometimes, just letting her
know you think of her and the family often, listen to the parents talk,
give hugs, offer to help (babysit siblings so the parents can make joint
visits ... or get away for a private lunch).   For the longest time, I didn't
know what to say and felt I was being insensitive when I'd pass their father
at daycare and say nothing.  Jim told me that was TERRIBLY WRONG and it was.
then that I started asking him how his son was and told him to call us ANYTIME.
We would gladly take the boy home with Juli if he and his wife wanted to
stay on at the hospital or break away for a few minutes.

I also noticed that the kids at the daycare center were bringing in little
gifts and handmade items/cards "for delivery" (via the parents).  It was
so thoughtful!  Small mylar balloons, colored pictures, painted and stickered
cards ...

The parents' church started a fund raiser to cover the cost of the transplant
(and travel to Seattle).  They also had a pizza fund-raiser.  I believe they
raised almost the $20K they needed to cover the cost of the transplant (and
related expenses).

I don't mean to alarm you, but I believe this boy had two strikes against
him ... it was a VERY RARE form of leukemia (and fast spreading) and he was
sick and run down for several months prior to the diagnosis  (yes, he was
under doctor's care, but it didn't show up for several months ... or just
developed).  I know of two other children who recovered from leukemia and are
doing great.

So just be there for them ... that's all you can do.

God Bless ... and I will say a prayer for Anna and her family.

Dottie

    
    It's amazing how people react when a major illness or disability is
    discovered, especially in a child. Some friends will stick by you right
    from the start, some will wait for a cue from you, and many will leave
    you. I've experienced this firsthand and it's one of the most puzzling
    things about human nature I've been exposed to.
    
    My advice is, don't worry about what you want to say. The best thing
    you can say is 'I don't know what to say'. Be there for your friends,
    help them out as much as you can with the simple things that will
    become a burden to them. If you're interested, learn more about the
    disease so you can discuss it with them. Encourage them to join a
    support group so that they can learn more about the condition and what
    they might expect. You might want to join the group along with them.
    
    Most of all, just be there for them.
    
    God bless,
    
    Chris
    

    Well, I have to say something here.  One thing you should probably
    never say (there are many) is, "gee, you are so strong...I don't think
    I could handle it".  When my daughter died I had several people say
    that to me and it sent me through the roof!  Would they rather I threw
    a temper tantrum infront of them?  Maybe it was just me but that did
    not help at all.  What did help was friends asking if they could help
    out, bring me coffee at the hospital or maybe bring me magazines to
    read while sitting there with my daughter (people often think of things
    they could do for the child but forget about Mom and/or Dad).  Some 
    friends also tried to "get me out" of her hospital room for a while.  
    I did not want to leave and didn't appreciate it when they tried to 
    pressure me to do so.  That's where I wanted to be.  Let Mom cry!  Let
    her talk about it as much as she wants.  When I was going through my 
    daughters illness and then death, no one wanted to see me cry.  I felt 
    guilty if I did cry and felt very alone...no one wanted to hear it (I 
    was a single Mom).  Also, I agree with the previous noters about really 
    making an effort to keep in touch.  Many friends do leave because they 
    don't know what to say so they go into "hiding".  It's important to
    know youy have moral support.
    Best of luck!
    
    Marie

    
    One addendum to my reply. It's easy to give the person your number and
    say 'call me anytime'. It can be very hard for the affected person to 
    make that call. What really helped was people calling ME, checking up 
    on things and just being there. 
    
    Re: .7
    
    Speaking of phrases which send you through the roof, the one that
    made me want to murder was 'it could be worse, at least he's not
    <insert your favorite illness or diability here>'. IMO this is a
    totally insensitive thing to say. 
    
    You may not understand what the family is going through, but showing
    them you're trying to understand, trying to help in any way you can,
    can really help. There may be some times when they don't want any help.
    Don;t be offended by that, it's part of the grieving process. Keep in
    touch.
    
    Chris
    
    
    Chris

    
    
    
    Coming from another person of experience.  I lost my daughter to
    Lukemia 4 yrs. ago at the age of 3.  I will have to say to that all the 
    previous notes hit it right on the button.  People have a tendency to
    be ignorant to situations that they can't handle or don't understand.
    But alot of times it's better that people just don't say anything. 
    There is a passage in the Book of Job that says almost the exact words.
    People seem to want to find a reason to justify anything. But I have
    learnt that all things happen for a reason and all experience are
    experiences that you make positive or negative.   Your choice!  I went
    through this experience as a single parent.  And thanks be to God, I
    have made it through and I am expecting my second child in November.
    
    So ditto, to that advice about picking up the phone and talking. I can
    remember maybe my phone ringing and maybe one or two persons calling
    over a 11 month period.  It really showed you, the meaning of
    friendship.
    
    It also helps to know what type of lukemia it is and read up on it. So
    that your friend doesn't have to go through the turmoil of answering
    all the questions.
    
    If you would like to talk off-line feel free to contact me at my mail
    node.  JUPITR::LCLARK.
    
    BTW, my daughter was also at U MASS. In my opinion, I would not have
    made it with out them.
    
    Leslie
    

    I am the noter from .8 that indicated that the bone marrow draw was
    easy to donate marrow.  I was speaking of the two people that I knew of
    that had had it done.
    
    Someone replied to me in the mail, not wanting to post a memo because
    they were too upset.  
    
    Her story was quite different, and in here case it was not EASY.  I am
    hoping that she will reply to this note with her story, so that you can
    hear the details, but in the case that she does not, I wanted to bring
    forward her reply to me.
    
    I apoligize for taking the two occasions that I had been exposed to
    this and making a carte blanc statement.  
    
    Please look into this more before taking what I said as the truth.
    
    

    
    Regarding .8 - 
        
    I am the noter which Jolene spoke of.  My experience was quite
    different.  The doctors at Brigham and Women's Hospital
    told me to expect alot of pain, but I was not prepared for what 
    happened to me.  Not only was my experience very painful but I 
    did not expect a 6 month recovery period.  I went into my Harvest
    full of knowledge and expecting pain, but wasn't ready for what 
    actually happened.
    
    This is a long reply.  It contains what the procedure is like and
    what I went through.  It is something that I feel strongly about.
    When my brother got sick in January (91) (his 2nd time), I held him
    while he cried and told him that no matter what, he could have anything
    I had two+ of.  We didn't know he was to have a transplant at the time
    (it was his choice to have the transplant, he was pre-leukemic and 
    could possibly have been in remission for another 8 years), nor
    did we know I'd match.  But, I would have given him a kidney if he
    needed it. 
    
    Rose Marie
    
    The test for matching is quite simple.  Just a tablespoon of blood
    is drawn.
    
    Before the Harvest, which is what it is called for the donor, the donor
    will usually store 1-3 pints of blood for themselves as most donors
    (90%+) require blood transfusions immediately following a Harvest.  
    
    The bone marrow is taken from your pelvis, usually the backside but
    sometimes they go through the front if not enough marrow was extracted.
    Each puncture site will be redirected 50+ times through your pelvis
    bone.  
    
    I forget the unit of measure, call it Z, a donor must donate Z units
    for each kilogram of body weight for the transplant patient. It is 
    therefore a much simplier process to donate for someone who is smaller
    than you, a child or small adult.  My brother was about 100lbs heavier
    than I at the time of transplant.
    
    I had 5 sites for a total of 250+ breaks/holes in my pelvis bone.  
    Initially I was told that they would be going through the front of 
    my pelvis also, but since I had, what the doctors there called (and I'm
    not kidding) 'juicy' bone marrow they didn't not have to extract from
    the front of my pelvis.  They were amazed at the quantity and quality 
    of my marrow.  (The doctors talked about it for weeks.)  
    
    Since I donated to my brother, we were asked and entered a study
    program.  I gave myself injections of EPO 5 days a week for 5 weeks in an
    effort to increase my red blood cell growth.  My brother was also given
    the drug, but intravenously (Each transplant patient have porta-caths
    installed prior to treatment. They are inserted under the skin of the
    chest and, from what I was told, the lines go just barely into the heart.)
    This drug was used to allow me to store up to 11 pints of blood in a 5
    week period.  I was not able to do that, but some donors were.
    
    95% of bone marrow transplant patients require blood products, red,
    white, platelets and IGG as well as the marrow from the harvest. 
    Platelets are a hard product to come by.  Jolene, maybe your husband
    could donate platelets?  
    
    It takes 2 hours to obtain 1 bag of platelets.  The blood bank can
    create a bag of platelets from donates of red blood cells, but
    transplant patients require platelets from a single donor, (one donor 
    per bag.)  Each time they receive platelets, they risk fever and
    infection.  At the time of transplant the patient has not immune
    system. (It can take up to 2 years for a patients immune system to
    fully develop.)
    
    Because of the EPO drug, I was able to store 5 pints of blood the 
    3 weeks prior to the Harvest.  During the Harvest they extracted 1+ 
    liters of bone marrow from me.  
    
    I refused the blood transfusion even though my hematicrit after Harvest
    was 23 (normally 42 for me, average for women around 36).  I had 
    severe anemic headaches, I couldn't stand for the two days following 
    the Harvest because of the dizziness and headaches.  I hoped that I
    could save all the blood for my brother, knowing full well that I would
    not be able to donate again for many months.  
    
    We were very lucky.  Neither of us used the red blood.  My brother
    needed many bags of platelets, a much needed blood product, and IGG,
    another blood product.  But from day 1 of transplant he started to 
    produce his/my own blood.  His white cells are female white cells,
    actually mine.  This is where the rejection comes into place.  He is 
    still taking anti-rejection drugs and may need to for a few more years.
    He is doing much better than expected.  He is on day 209 (after
    transplant). 
    
    The pain was intense.  I was not expecting it!  I really thought I
    would be able to sit with my brother while he was receiving my marrow.
    Not a chance.  I couldn't move for hours.  I mean roll from side to
    side.  The muscle tissue was so torn from the 250+ times they redirected 
    the 'needle' that it was not 'cooperating'. I have gone through labor 
    and the pain in my pelvis was far greater than anything I've ever gone
    through. I couldn't sit, lie down, stand up (for days)!  You don't 
    realize how much you need your pelvis until you can't use it.  
    
    I was on iron pills twice a day for 6 months.  It took that long to 
    get my hematicrit (red blood cell count) back to a normal level for 
    a women. I've been told by my primary care physician that I may never
    get back to my 'old' normal of 42. 
    
    As a side note to possible women donors, it is harder for women to 
    recover then for men.  We have monthly cycles, which to this point
    never bothered me, that can reduce a hematicrit by 3 points each month.
    So progress is slow.  Up 2 points, cycle, down 3 points...etc.
    Your body can only absorb something like 2% of the iron you take so
    the more you take the better but still it isn't great.  I don't have
    to tell you how much fun it is to take iron pills.
    
    It was a very emotional experience for me.  I was upset when I read
    .8 stating is was a easy procedure for the donor.  While some people
    may not have a problem, others experience great pain and lenghty 
    recover periods.
    
    I realize that my experience was different than the anonymous donations
    (they are only required to give blood for themselves) but I had heard of
    others that went through the same program and where walking around 
    the next day.  As with each pregnancy, labor etc, each experience
    is different.  To say that it is a easy procedure is misleading.  It
    is a simple medical procedure for the doctors.  Risk of death is 
    very small, basically the risk is from the anesthesia.  But for each
    patient the experience is much different.  
    
    I will do this again, for my brother or a stranger. 
    Out of 4 children (including him), 3 double cousins, mom and
    dad and the National Bone Marrow Registry, I was the only match and
    a perfect match (except for the sex).  (This is from memory -
    there is a 1 in 4 chance a sibling will match, 1 in 100 that a
    parent will and then the odds greatly increase...1 in 20,000 stranger)
    
    Matching is a rare thing, we were told of a patient with 11 siblings 
    and not one match!  It is very difficult to put in to words everything
    that I went through.  I would do it again in a minute!  But this time,
    I'll know what to expect!
    
    Thank you Jolene for being so responsive to my mail message. It is
    something very personal to me, and as I stated in my mail message I
    get very upset when blanket statements are made.  The pain is still
    fresh, after a few years I may not be upset so easily.  
    
    Peace,
    
    Rose Marie
    

    I can only offer my love and support.  I have had no personal
    experience, in our family with leukemia, however I did loose my mother
    to cancer in 1985, 6 weeks after our daughter was stillborn.  Someone
    made a comment to me that having a child preceed its parent to the
    grave is something extremely hard to understand, it just seems so
    unnatural.  I am a firm believer of this now.
    
    Since AJ spent so much time at Umass Medical, I have had what I
    consider the priviledge, to seeing how much support the families of
    young leukemia patients receive.  There are afternoon gatherings once a
    week with coffee, cookies and conversation.  The families are welcome
    to share, or not share at all.  It is handled in an ever so gentle way. 
    Although I don't know much about it, there is the WHY ME foundation,
    for children with serious illnesses.  Umass also has the Parents
    kitchen, where parents and families can go to make a cup of coffee, or
    make a simple meal, utilized the stove, refrigerator, coffee maker,
    toaster or just have some quiet time away from the child's room, but
    still be close enough to be there should the child need them.
    
    What I did observe is that no matter how sick the child is, the
    playroom is offered as an escape from the hospital room, and medical
    proceedures.  It was recently renovated, and completely stocked
    compliments of Toys R Us.  As toys are worn out or broken, they replace
    them at no charge to anyone.  Arts, crafts, drawings, story telling,
    nintendo are there as a diversion. There is a strictly enforced policy that
    NO medical procedures can take place in the playroom.
    
    I have seen parents of seriously ill children, and know from my own
    experience that a good listening ear is probably the one thing that is
    needed most.
    
    Once during one of AJ's extended stays his Godmother arrived with
    grinders for our lunch from the Rigatta Deli (it's right accross route
    9) and we simply ate in his room.  She knew better than to ask me to
    leave his side for any amount of time.
    
    There were one or two occations when hubby and I would "live
    dangerously" and go out of the hospital, or even just down to the caf
    for dinner.  During those times one of the staff would sit right in the
    room with him, they were great not just to AJ but to us, the parents as
    well.  
    
    Because they use a "primary nurse" system.  One nurse who knows your
    child better than anyone else, this nurse will literally be with you
    right up until the end, no matter what time of day or night.  I saw one
    nurse who had been called in in the middle of the night, and stayed
    with the parents and child until the child passed on, she too cried
    when it happened.
    
    God bless you.
    Lyn  

    I started this note over a year ago and thought I would enter an
    update.   Anna has been at UMASS Hospital for the past 3 weeks.  She
    originally had a staph infection which developed into 3 different staph
    infections while in the hospital.  Once she started to feel better
    she had to undergo chemo treatment which was stronger than in the past.
    I believe they gave her morphine for the pain.  She had to have a
    blood transfusion a few months back.  When she is feeling well they
    allow her to attend 2 - 3 hours a day at school, lately that has not 
    been possible.  The broviac (?) tube which is a tube in the chest used
    to administer the chemo is infected and she is scheduled for an
    operation on Monday.  This list could go on and on,  it has really been
    a rough year for Anna and her family.  It is probably the hardest thing
    to do is see your child suffer while you can only offer support.  SOrry
    for rambling on, I call, send cards, balloons and gifts but I still
    feel useless.