Re: Irene From Tampa
 

Amen, again John.

Re: Irene From Tampa
 

John -
Know that we feel your pain seeing Irene's disease come back on her so quickly. It is a shock after she had responded so well to the T-DM1.

It is exactly for people like Irene that our group has been asking Genentech to release it for Compassionate Use.

Clinical trials are run to uncover all kinds of information. The billirubin elevation may or may not be very meaningful, but the trial managers made the decision to withhold.

Joe of this web site may know who you could try to speak with at Genentech to restore Irene's treatment. You have my prayers that the previous decision will be changed.

Re: Irene From Tampa
 

It would seem that there is need to augment the clinical trial practice with some new process for refractory patients that no longer respond in accordance with sponsor and FDA agreed test evaluation criteria and for whom no alternative, potentially efficacious treatment is at hand, which in so many instances is the case.
And yes, that new process should definitely include option to continue receiving original drug(s) used by ongoing clinical assessment.
Not only is it possible, even probable that patients assigned to and treated in this new setting will reap more benefit from this service than being outright excluded from it, but they also continue to provide science with further data about drug’s performance when re-administered after some period of discontinuation.

Re: Irene From Tampa
 

Conversations took place yesterday regards Irene's circumstance and the ready access to TDM1. As already mentioned / posted in this forum, such access isnt currently available.

There may be issues with the drug - although its agreed that the drug does work in many people in their fight against a terminal disease.

As mentioned to the Genetech representative, their stated search is a CURE for cancer - in its many varieties & complexities - one, two at a time. These trials are many and well founded, providing the statiscal basis on which "cure" is processed and offered - however, one stastistic should be unavoidable in their considerations - zero.

Irene Fernandez had double-digit tumors reduced to zero.

TDM1 may be the cure for Irene Fernandez.
TDM1 may be the cure for many of others at this forum.
TDM1 may not be a perfect drug yet - that process continues in good faith - but it worked "as is" now
on Irene. Unlike any chemotherapy taken previously - and over a 14-15 year period there have been many - TDM1 made her tumors both shrink and disappear.

Liver toxicity levels are a concern - but when compared to the ravages cancer will undoubtedly impose on her body - its a minor challenge. Irene's faced larger mountains with a strong heart.

Its a risk worth taking - its a risk she's been willing to take for many months, but her voice went unheard - unheeded.

In the complex healthcare field, Irene needs a partner of similar strength & conviction as she.

Irene lives in an absolute world.
Perhaps others on this forum - most certainly in the country share her circumstance.

There are no greys - its fairly black & white.
Maybes dont exist - its yes or no.
Good intentions..a well placed heart - dont count.

After a long and hard search - a battle to stay alive until such a cure could be discovered - TDM1 was found. This may be it for Irene. In every sense of the phrase.

Irene's (our) plea isnt made for "good intentions"...
Its not a search for calm in a difficult time...
Its not an effort to leave no stone unturned...
Its a desparate / first clenching grab for life.

Adminstrative concerns wont change the nature of this moment. A long clerical/medical "to do" list cant prevent action. An expression of concern - although accepted as heartfelt - wont suffice.

Action is needed.
Bold, creative, motivated action is whats necessary.

I believe Genetech is capable of these things - if they have the will.

I believe Genetech is capable these things - if they mirror Irene's strength.

I believe Genetech can cure Irene's cancer.

I believe thats their stated goal.

The time is RIGHT NOW.

Re: Irene From Tampa
 

John, I so agree that the "drug dealers" working to "find the cure" must have the level and depth of courage that Irene and so many others express daily. Line up the lawyers ready to have the "you're not responsible" papers signed....But give them the drugs! I'm prayin' for your miracle! ma

Re: Irene From Tampa
 

I am so sorry to hear this, John. Peace and love to you and Irene. xo Suzan

Re: Irene From Tampa
 

John, can you find out who is in charge of herceptin-TM1 at Genentech and have Irene's oncologist contact them directly? Could he put a human face on the situation and ask as one human to another if there is not a way Irene could give up all rights to sue and continue to receive the drug?

I have met the persons responsible for herceptin @ Genentech (she left soon after it was approved), lapatinib @ GSK( he left around the time it was approved) and knew the son of the woman in charge of rituximab development and trials @ IDEC (who was willing to ask her questions on my behalf). All were very considerate human beings. They must get these types of questions all the time, but not often with a face on them. Perhaps your doctor could arrange a video conference call if he/she does not get an emphatic no to his/her plea.

Just thinking out "loud"


Hope some of this helps!

Re: Irene From Tampa
 

Friends..

I posted an update at Caring Bridge regarding Irene. I dont have the strength to repeat it.

Please be well - John

Re: Irene From Tampa
 

Here is John's post on Caringbridge:

Dearest Family...
Dearest Friends...
Dearest Loved Ones...

I'm heartbroken to bear you this news...but Irene's battle is over.

Dr. George met with Irene, myself and the girls this afternoon...to graciously and with dignity let us know the war couldnt go on.

Irene's liver simply is no longer up to the task.
He recommended discontinuing care.

We're uncertain...actually doubt...if Irene understood the import of Dr. Georges words. She showed no reaction.

So...its over.

In recent times I'd been told that Irene & I had done just about everything that possibly could have been done in this long engagement. I know Irene had...and I struggled to mirror that effort in her abscence. I didnt want any stone left unturned...any possibility left unexplored. In the end, we simply ran out of stones.

In coming days we'll explore ways of bringing Irene back home...back to our home...where she belongs and where will always be part of. I want her care to be dignified and loving. She deserves nothing less - much, much more.

Two things please........

In recent days Irene was searching for the words to some prayer....and had the phrase "Jesus stay with me..." in her mind...but couldnt construct or recall the remainder.
Does anyone know if this truly is part of a prayer? I do not. If so, please be so kind to let me know.

Also - Friday will be Irene's 64th birthday. Come. Be with her. Please.

I do have to go...my heart is out of words.
Please be well and please go well.


Love to all - John


John, I have no words - only continued prayers. I don't know the specific prayer Irene is seeking - Jesus stay with me - but I do know that it will be so.

Please give Irene my love,
Chris

Re: Irene From Tampa
 

I am so tired of bad news while drugs that can make a difference are not made available...even as a last effort.
Tired, sad and feeling like we are all just waiting our turn. Words cannot express...............

Re: Irene From Tampa
 

So sad to hear. Why does this have to go on? When will it end? Irene is such an inspiration and she deserves so many more birthdays...

You are in my thoughts and prayers. Praying for a miracle.

Love, Hope, Peace, Carolyn

Re: Irene From Tampa
 

Shedding tears of sadness as I read this post. It's just so damn unfair......I'm getting ticked off about our sisters and brothers dying of this cancer and having to fight to get the treatment they need and deserve.

Irene is a true warrior. John, wishing you all strength during this very difficult time.

Re: Irene From Tampa
 

John this news just breaks my heart. What a fighter & "true" inspriation Irene has always been to me. I'm so sad and angry at the same time. Irene has always been one of the strongest women on this board, & I really believed she would pull through this. Sending all my love to Irene. I will continue to keep all of you in my thoughts & prayers.

Chelee

Re: Irene From Tampa
 

Oh John. I am just numb. I am so sorry. I'm glad you will help her leave this world in a dignified, loving way. Just 64. This disease STINKS! Please tell her she is surrounded with love. Tell her she brought wisdom and beauty and love to our community and that the essence of her will live on through us, through those she inspired.

Love

Jacqueline

Re: Irene From Tampa
 

I'm staring at this screen numb with this latest news. Words don't come only feelings. I'm trying to imagine Irene blanketed in dignity grace and love.

Re: Irene From Tampa
 

This news of Irene flattens the spirit and challenges the hope of better tomorrows. I know they are working hard to find the answers, but to know one is right and available to some is so hard when it is denied to the most desperate. Love to Irene and John and the family. ma

Re: Irene From Tampa
 

Dear John -
To borrow a phrase from American statesman Thomas Paine, "These are the times that try men's souls."
Not only men, but women and children are tried.

Our souls ache for Irene and all her dear, steadfast family and friends. She has had a long, very positive connection with many of us on this board.

I hope someone will come up with the rest of that prayer. It seems that Irene has been closer to her maker in recent days.

Re: Irene From Tampa
 

I found this online...my heart is heavy and I'm sending prayers to Irene, you and her family and friends.




Sam Cooke, Be with me Jesus Lyrics

Oh Lord, the time is growing high
When I must breathe my last breath inside
Lord, in my dying hour, stay with me, Lord

Oh Lord, my friends have gathered ‘round
They’re watching me slowly, slowly sinking down
Lord, in my dying hour, stay with me, Lord

Now Lord, now Lord, now Jesus time have come
When I’m a leave my earthly home
Friends standing around, tear in the eyes

They know that I am about to die
But I’m not worried, I’m not afraid
I know you do, Jesus, just what You say

You be with me Lord, day and night
I’m not afraid, I said I’m dying, don’t leave me now

Oh Lord, I know you’ll stand by me
When I’m in trouble, when I’m in misery
And Lord, in my dying hour, stay with me, Lord

Oh Lord, I know You’ll stand by your word
Whenever I call You, I know You have already heard
Lord, in my dying hour, stay with me Lord

Now Lord, I said farewell, fare thee well
Fare thee well to my friends down here
I’ve got loved ones waiting for me up there

Oh Lord, others are waiting for me
What a reunion, I know that will be
Lord, in my dying hour, stay with me, Lord

Re: Irene From Tampa
 

I've been posting on Irene's caringbridge page...and like John find it too much to post in both places.

Irene has always been my inspiration, and will always be.

I so admire how one moment she would feel herself running out of options then the next would find her squeaking through a partly open window - and running full force again, sometimes for a long time.

Irene told me once that she sometimes hesitated to post because she hadn't been "cured" and didn't want to scare people. Yet although cancer is scary, Irene is the antithesis -always bold, heroic (although I doubt she would call herself that) and full of both passion for life and compassion for all she came in contact with.

Re: Irene From Tampa
 

These are such sad days. Irene is such an inspiring and uplifting person. I'm sure that TDM-1 would have given her more quality time, and I have trouble dealing with the rules that still do not allow it to be released for compassionate use. My thoughts continue to be with John and Irene and their extended families.
Best,
Barbara H.

Re: Irene From Tampa
 

Hello all.....
Many thanks to you all for the love & support you've shown Irene (and I by reflection). Without doubt these truly are the most trying days of my entire life...unquestionably.

I gained a sense of peace somewhere along the line today...and mention it in my post at Caring Bridge...but its dissapated in the few hours since typing the last word. I fear it will be this way for quite some time.

Unfortunately, this system wont allow me to copy/paste it to this forum...so if someone could assist me I'd appreciate it.

Be well - my goal is to get some sleep tonight as tomorrow is Irene's birthday, but sleep has been too great a challenge of late.

John

Re: Irene From Tampa
 

John I just copied and pasted what you wrote on the Caring Bridge site today.
My prayers still continue for Irene and you and the girls.
++++++++++++++++++++++++++++++++++++++++++


Today has been long, busy, tiring and yet mentally settling.

Irene had a restless night as her breathing was challenged.
She was unable to cough fully and clear her throat of some fluid, so the nurses were called multiple times to check her lungs and move her into a better/different position. In her lethargic state, she's not swallowing properly...fluids can go to her lungs...so the doctors have mandated nothing be given her by mouth.

Her ammonia level rose to 140.
Her bilirubun rose to 6.3
Her platlete count dropped to 19.

I cancelled her 15th - the long sought last radiation treatment. In Irene's condition, it would serve no curative purpose and it seemed an injustice to put her (and the technicans) through it.

She's resting comfortably besides me.

Perhaps she's overheard our room conversation...that she'll be going home. I (and the girls) visited Hospice House mid-morning and after learning the parameters of their service, decided fully to take her home to rest. We'll meet with the Hospice representative from the hospital on Saturday to make those arrangements.

I'll set her up in the middle of our family room - where she can be surrounded by all her loving friends...family...Maxx & Mollie - for as long as she'll let us have her. Hospice will be on hand (or on call) to keep her comfortable and I and the girls will fill her days with music, reading, sunlight and love. Lots of love.

When we have her there...come often...make yourself (and Irene) comfortable.

From the Hospice House we traveled to east Tampa - to revisit a patch of ground Irene & I had chosen many years ago as our final resting place.. She was to have a stem cell transplant...a possibly fatal procedure...so such arrangements were necessary. She made it though the transplant and the many months thereafter. It wasnt easy..but she/we made it...the land wasnt needed and since its matured into the quiet, peaceful place we envisioned.

Discussions took place and tentative arrangements were reached to care for Irene after she passes. Irene's final days wont be cluttered by administrative matters. Eventually Irene (and someday I) will rest beneath a proud oak tree...with wind chimes and gentle breezes. A bench will be left for you to sit on...and tell us of your day.

My heart overflows whenever I read the many prayers & passages that you all have provided for Irene. Theres something too special about such loving expressions...I dont have the words. Rest assured...I promise...that I will read each and every last line to Irene...as softly and best I can.

Although it wont ever be forgotten, its time for me let today go.

Dont forget - tomorrow will be Irene's 64th birthday. If you cant come and give her a kiss...think of her all day. It will be her last birthday - so make sure you dont forget to celebrate the entirety of her. Fill your day with her. No "Sorry I missed your birthday" cards will do this time.

As I close, Irene is "exercising" both feet under the sheets...
Dr. George's words probably ringing in her ears.

Its tender, heartbreaking and no wonder why I love this woman so much.


Love to all - John

Re: Irene From Tampa
 

Many hugs to you and Irene. I hope she has a wonderful birthday. Her life and her strength should be celebrated by everyone.

Re: Irene From Tampa
 

Happy 64th Birthday (1-22), Irene. We'll be celebrating with you.

[Shen Zih kuai Lerh]

Re: Irene From Tampa
 

Happy birthday, Irene!!! I'll be praying and thinking of you and your wonderful
family who loves you so much!

Here's happy birthday in Portuguese:

Feliz Aniversario!!!

Re: Irene From Tampa
 

Happy birthday Irene. Please know that you are surrounded by prayer, love and comforting hugs. I am glad that you have such a wonderful man to care for you. You and your family are in my prayers daily.

Re: Irene From Tampa
 

Dear Irene,

Happy Birthday & Hartelijk Gefeliciteerd (Congratulations from my heart) as we say in the Netherlands. May the love you have showed to all be mirrored a thousand times in this world.

As a birthday gift I am sending rays of light and well-being.

Love

Jacqueline

Re: Irene From Tampa
 

Irene,

Happy birthday.

Amelia

Re: Irene From Tampa
 

Irene,

I'm sending you birthday greetings and hugs from Deep in the HEART of Texas. My love goes out to you and your family as you celebrate today. Your life has been a gift and an inspiration to us all.

Love, Alice

Re: Irene From Tampa
 

Happy Birthday, Irene.
I have been thinking of you all day.
Barbara

Re: Irene From Tampa
 

You were in my prayers this morning. Happy birthday to you!

Re: Irene From Tampa
 

You were in my thoughts so much today. Praying for peace for all of you. Irene was my grandmother's name....lovely, lovely name.

Sending love,
Maureen

Re: Irene From Tampa
 

I woke up this morning wishing Irene a beautiful Birthday as she shares these moments with you all. I go to bed tonight thinking of her too. She shares my sisters name and one of my best friends birthday. Thank you for sharing so much with us John. It is greatly appreciated.
Much love and peace ~ Ruth

Re: Irene From Tampa
 

Happy Birthday Irene
I am praying to Sister Mary McKillop (our nearly new Australian saint) for you.

God Bless You.
Jackie (down under)

Re: Irene From Tampa
 

Happy birthday, Irene. Sending love, hugs, and prayers to you and your loving family. God bless and keep you all, and bring you peace.

Re: Irene From Tampa
 

Sorry I've not posted for a few days, but they've been both evenful and tiring.

Irene's birthday was a happy day...yet sadness was lurking. So many friends and family members came with best wishes and happy hearts that at times the air was filled with happy laughter and friendship. Tears of both joy and saddness could easily be found.

The hospital had to ask the overflow to contain themselves when in the hallway. They've been nothing but hardworking, understanding, caring and kind during the entire ordeal and I want them to know that its recognized and taken to heart. It takes a special heart to remain strong amongst such trying circumstance - yet these people can do it.

Irene's white blood cell count had dropped below 1 - so surgical masks and antiseptic soap were required by all. Her counts havent been this low since the stem cell transplant.

We hope to bring Irene here tomorrow. Hospice didnt show up yesterday so our meeting was delayed by an administrative snafu. So I hope to meet with them this afternoon...hopefully time enough for them to get the necessary equipment to the house.

The girls and some friends are coming over today to help take down the Christmas tree and decorations which have remained in place since the house was evacuated about a month ago. Its odd to be walking amongst gift packages and alike that bring only an odd sense of detachment and sadness.

Its early Sunday and I'm at home.
I came here yesterday evening to organize things a bit but simply ran out of gas and couldnt make the drive back. Andrea was good enough to bring me some necessary medicine so I could remain.

I'm totally exhausted yet cant find sleep in my own bed. I dont know whats to come of the future, but I foresee cold seas and I'm a tired swimmer. Best I keep thoughts to a minimum.

As I often do, I ran through my picture albums of better times...but must admit I'm crushed and they didnt have the desired affect. Hopefully next time.

I updated the Caring Bridge phote album with some more pictures of Irene during happier times and with good people.

Be well and all my love - John

Re: Irene From Tampa
 

From Irene's Caring Bridge website:

Tomorrow Irene comes back home....to a spotlessly clean house. The girls, Irene's brother Paul, his Soul Mate Liz and the irrepressible Erma cleaned this house of dust of the ages. The dust of some dinosaur fossils were found...just before being sucked up into the vacuum cleaner!

Truly : they deserve serious praise for their hard, extensive work. For the honor they paid Irene.

Michele & I met with a Hospice representative at the hospital in the afternoon and arrangements were put into motion. Necessary equipment will be delivered before noon - then sometime in the afternoon I'll be dropped at the hospital so I can ride with her back home. She's coming home.

I found loading up the car with things from Irene's hospital room difficult. Over the years I'd wheeled cartloads of flowers,
clothes in plastic bags, luggage & medical supplies...from many of Irene's hospital rooms, but something was different this time...something undefined.

Until it hit me: it was the flowers.

These flowers would be different. Irene wouldnt be getting well this time and "suggesting"where I should plant them. Irene wouldn't be healing and tending to them months after...or being certain I did. Irene wouldn't be there to put cuttings into a table top vase and light up the room. It was the flowers. These flowers had no home and I found myself crying while filling my car with them.

There's so many things about this turmoil that simply destroy me. I see others struggle as well...but sense they have a better grip and I'm both puzzled and jealous. I know I'm suppose to find peace...find understanding in that she'll be in a better place...at rest...when this war finally ends...but my heart and mind simply aren't on the same page. They cant find accord...and I cant find peace.

Before leave leaving Irene for the night, I spoke to her.
The nurses had recently roused her...causing her to open her eyes. Andrea spoke to her Mother lovingly and Irene's face relaxed into peace fullness...her eyes closed contentedly as she listened. Then I told her how much I loved her and asked her to have sweet dreams: "to dream of Italy...to remember
Cortona...Kay & Ed....Fernando & Giovanna...dream sweet dreams darling...remember Italy." A tear formed under her eye which Andrea wiped away. I'll always remember that.

Before leaving the room I stopped and returned. Pulling some paper from my suitcase, found the prayer: Stay with me Lord - and read it to her. If she should pass during the night...if should she should pass in my absence...I wanted my last words to her to bring her comfort.

Although I've never felt such anquish before...and I hope never to again...I want to do this right. I need to do this right. I want her to know I love her...and that it was done right.


John


ps - theres some new photos in the album.

Re: Irene From Tampa
 

John -
Thank you for opening your heart here and showing all the spirit the family and friends are pouring forth in these gut wrenching days.

You are " a prince of a guy" as my dad would day.

Re: Irene From Tampa
 

John, what you daily give to Irene is what we all long for and greatly fear won't be there for us when we need it most. God bless you for caring so kindly and choosing rightly for Irene. ma

Re: Irene From Tampa
 

Irene is home.

On a sunny, blue sky day...Irene came home.
Our family room is filled with the reflected sunlight of late afternoon and the sounds of Tuscany are flowing over her.

Most precious is that she's amazingly aware.

Following many days of silence, I arrived to the hospital to find she'd "woken up" and could stare up at the girls and myself. She's recognizing and acknowledging people and conversation with head motions or light moans.

She recognized Mollie calling out to her from outside and per her gently when Mollie was brought to her.

My guess is...that she's been laying back...resting and marshalling her strength all the while listening to us talk about her coming home...and she didnt want to sleep through it!

Amazing woman.

Rest assured....
She knows that I love her...
She knows my heart is hers to take on her journey...
And I know that she loves me too.

Taking her hand I told her that I'd never stop pestering her and love her forever...and she smiled.


John