November 7th

I joined FMO to try and journal my feelings of loss, guilt, grief - and found it didn't  come so easily.  But after seven years to the day I can look back and understand how badly I was in denial about David's illness - every time I read, " survival rate is 35% after 5 years " or "sooner or later everyone dies from this disease ", I would brush it off as.....well, yes, but not for him. Not David. Of course not.
And with denial comes wrong choices, perhaps. A bigger hospital, different doctor, different treatment and just maybe a different outcome. A five year clinical trial finished six months after his death showed that his treatment was less effective than that suggested at one of our second opinions. Autologous transplant v. three years of chemotherapy. He loved his doctor, who pushed for transplant, and he wanted to get well, marry Lisa - and get on with his life. He did not want years of chemo and the side effects, one of which was neuropathy in his fingers. David's second love was music: he was a classical pianist and keyboard player in a metal band. So we did not stop him. The motherf..... of "what if" and "if only".
He did get well, played his music, lived with Lisa for a while and relapsed six months later. Now he needed a donor bone marrow transplant - there was no match in our family nor on the donor registry in the whole US. At the eleventh hour, a 24 year old female from Germany was found and she agreed - her blood was flown to Indianapolis. 
He died six weeks later, his hands tied to the bed rails as he tried to tear out the tubes that came in and out of him. He was bald, emaciated, covered in red blotches where the transplant was rejecting. He was my beautiful boy.
I don't know where the time has gone.
 
 

Replies

Livingjuicy
Livingjuicy

He IS your beautiful boy... Oh, my friend... I\'m not sure I would call it denial... It feels more like you were in \"HOPE.\" Hanging onto whatever chance your son had and in that comes the choices that are made.

Feeling your tenderness and the heartstrings that you all needed to hold onto. That is not denial, Joanna, it feels more deeply like the threads of hope that were interwoven into every decision and choice that was made. It was all done in LOVE and with care.

Hand in hand and Heart to heart,
XO Joanie
annsullivan
annsullivan

I so understand....Hope is all you can hang on to and you do hold on tight. Your David was going to be the one to beat the odds and NOTHING anyone would have told you would have made any difference. Hugging you very tight on this tenderest of days. Hugs, Ann
donnasd
donnasd

Thinking of you & David at this poignant time...

Warm hugs,

Donna
Missinglisa
Missinglisa

Oh my dear. You did everything you could. I believe I would have done the exact same thing as you.
Denial is a way of coping with an unbelievable situation. As Joanie said, denial and hope are basically the same thing. How could my child be so ill? We couldn\'t possibly imagine a live without our beautiful children. For me, I still have a hard time believing that Lisa is no longer here to talk to.
We walk this road together.
Love and huge hugs,
Marlene
I
CFMOM2
CFMOM2

Hugs to u and know that I understand your thoughts totally. Kathy
ter1
ter1

I think of it as a blessing that time keeps going faster and faster.

We all look back and think \'if only we did this or that\' the outcome might have been different. I try very hard to not go there anymore but we all know that can be hard to do at times.

Sending tight hugs,
Terry
NoraMc
NoraMc

I play tonight for David........ my eyes will leak as they are now.... but I play for him...... love ya!
sonshinedeb
sonshinedeb

He is a beautiful boy. You miss and love him beyond what most people understand. All of us know.
Love you and honoring David.
XOXO Debbie
Abotsd
Abotsd

You did all you could do, David, too. So pro-life and hope. I wish I coulda helped my beautiful boy just some of what you did.....no time for help at all. Moms feel guilty, we love them so much, accepting the end is near impossible. Heart to heart, Abby
zzztop
zzztop

DEAR jOANNA: YOUR JOURNAL WAS BEAUTIFUL.; I ALSO WAS IN DENIAL I WOULD NOT GIVE UP. MY ROZ. ARMS WERE TIED DOWN TO YOU LOVED YOUR SON SO MUCH AND SO MUCH TURMOIL AT THAT TIME. ALL SO SAD. WE JUST TRY TO DO THE BEST WE CAN . IT IS HORRIBLE WATCHING YOUR CHILD SUFFER SO MUCH AND ALL YOU CAN DO IS WATCH. BLESS YOUR ANGEL LOVE MARY ANN
saltwatercowgirl
saltwatercowgirl

Sending hugs your way - Your boy will always be beautiful - never to forget.
((hugs)) Vicki
NellW
NellW

With tears in my eyes thinking about you and your beautiful son. My Jeff also went thru all the chemo - losing his hair, splotches all over his beautiful face and head. He was so embarrassed and I still held on to the belief that he was going to live. I also was in denial till the day we lost our Jeff. My heart just breaks for you. To watch our child suffer and we as Moms cant do one thing I guess is one of the worst things we can go thru. Love and hugs to you my precious friend....Nell
BinkyH
BinkyH

I am so sorry.
carasmom
carasmom

I never keep up with the dates... I just read your journal... and my heart aches so much for you... I agree with the other moms... it wasn\'t denial... it was hope... and you had to hope with everything in you... to give up... no matter what people might tell us... not an option... and its not supposed to be... I often think about how hard it was to see my parents dwindle and die... but to see our children... no we hoped... and we cried... and we prayed... and when they died... hope died... but we\'re human... normal instinct to survive... so now we are living and crying and praying and hoping there is another plane where we will be with them again... the days leading to Cara\'s anniversary this year were just really awful... and it took me awhile to recover a bit... but I am trying really hard to lean into the craziness... to talk to Cara... I even find myself again I am grateful praying to God... feeling their presence... a bit of peace... I will pray you will have some of this peace... Hugs Elissa
jmk1973
jmk1973

I am so sorry, he had to suffer like that!! My heart goes out to you !!

((((HUGS))))....Julia