Katrina Palmer from UK - RIP Sept. 2014

[Katrinauk]

Hey all my asps warriors,
I am Katrina, I will give you a very quick breif on my story so far. Soooooo.......
In 2007 I was three months pregnant with my beautiful daughter Ella Brooke, When Id noticed a lump deep in my left buttock, being dismissed as a hormonal scyst, i thought no more of it. Then when Ella was 6months old, I had a fall whilst dancing around trying to entertain her (as you do),lol. Then I realised I could not get up from the floor, and feeling a very large lump poking out, only what i thought was a dislocated hip, I went to the loacl hospital only to be told that i was a drama queen, and to go home and rest, it was just grissleg the nurse told me, and that if it becomes a problem then my doc can schedule to have it removed. I asked for a second opinion, to then be told how I was far too dramatic, and that I should trust her the proffessional, as she sees these lumps of grissle very often.
Taking her advise I ignored the lump, untill Ifell pregnant again a month later, and Id noticed this lump started to grow quite rapidly, until the skin had started to peel away, my leg would go numb, i had many falls, and could no longer sit down. Fearing the worst I went to my doctor, where he immediately got mad at the nurse for turning me away, and he sent me for biopsies, which of course revealed that I had a 'soft tissue sarcoma', a week later, i had an x-ray which then revealed more bad news, that it had already spread to both of my lungs. The only 'problem' for the doctors was that I was pregnant. So to have any chance of getting better, or surviving as long as possible, i needed to start treatment immediately, which wasnt possible whilst pregnant.
I had avery tough decision on my hands, fight to stay alive for the baby I already have, or fight against all my love for my unborn child and do the unimaginable. The only one thing that was prominant in my mind, was that Ella needs me. So I gave birth to my beautiful baby boy -Ashton Riley- two days before Ellas first birthday, I lay him in gods hands to rest just a few days after the birth.
Then my intense radiotherapy began, followed by two major operations which removed all of my left gluteous max, and most of the gluteaous min. I was told before surgery, that I would not wak again unaided, and I would need a wheelchair. Determination and a strong spirit, got me up and walking just three hours after surgery- excruciating- but i was not going to accept a wheelchair when i had a baby girl needing her mummy.
I was then told that there were no available treatments for my lung mets, here in England, so they would leave me until I was symptomatic, then investigate other avenues. 2.5years after diagnosis, my largest tumour sat right next to my heart on my right lunggre to 10cm, so I was put on 'sutent', which I found difficult with side affects, but stuck it out anyway, until five months after starting sutent, scans showed growth, and I was taken off.
Back in the same situation, I was told there was a drug being ntrialled called cediranib, but it wasnt available for patients at that time, so I underwent radiotherapy to the chest, and one word guys-OUCH!
Then of October this year, I was told the trial was open and I had been accepted. So here wishing all of us hope for a cure, and strength for our fight! xxx

[Olga]

Katrina's experience on a cediranib trial in UK can be found here:
http://www.cureasps.org/forum/viewtopic.php?f=45&t=692

[Bonni Hess]

Dear Katrina,
Welcome to the CureASPS Discussion Board, and thank you for persevering through all of the problems that you had with registering on the site and for now graciously sharing your information and your beautiful pictures of you and your beloved little daughter Ella. I am so deeply sorry for all that you have been through during the past four+ years with your initial frustrating misdiagnosis, the tragic and devastating loss of your prematurely born precious baby boy, and your surgeries, radiotherapy treatment, and failed Sutent treatment. You are a courageous young woman with an obvious very strong and invincible attitude and spirit. I am so grateful that you seem to be having a very positive and successful response to your recently started Cediranib Clinical Trial. Since you are posting in the Cediranib topic, I will now follow and respond to your updates there. Take care dear Katrina and know that my very best wishes and most special caring thoughts are with you and dear little Ella.
With deepest caring, healing wishes, and continued Hope,
Bonni Hess, mother of 29 year old Brittany diagnosed in July 2001

[Bonni Hess]

Dear ASPS Community Friends,
It is with a very heavy heart and deepest sorrow that I am writing to share the devastating news about yesterday's tragic loss of ASPS patient Katrina Palmer from England who was a former participant on this Discussion Board and very active in trying to prevent Astra Zeneca from discontinuing production of Cediranib. Katrina had not been active on this site for the past couple of years, but I have remained in close contact with her through personal e-mails and her Facebook site which you can access at Prayers and Support for Katrina Palmer. Heartbreakingly, Katrina suffered aggressive disease progression following her failed Cediranib Clinical Trial and has been very courageously fighting large and widely disseminated tumors in her lungs, brain, liver, and other areas. Katrina was a single mother with a young daughter who was her inspiration for fighting so hard to Live despite the increased immense suffering that she endured and the insurmountable challenges she faced from her relentless disease and incompetent and negligent doctors. I know that it would be deeply appreciated and very comforting to her family if you would write to Katrina's Facebook site to express your sympathy and support during this time of such profound grief for them.
With an aching heart and immense anger that yet another precious young Life has now been taken by this insidious disease, and another family's Life turned upside down and forever changed
Bonni

[D.ap]

Bonni

I share in your immense anger in the loss of another young life to this evil disease.
I've tried to log onto face book to send our condolences to the family but could not locate Katrina's face book page.
When you get a moment could you link us to their page?

Thanks so much for taking the time to share the sad news of Katrina's passing
Love
Debbie

[D.ap]

To Katrina and family

Our hearts and spirits are with you always--

Our Hearts Will Always Touch


When I laid there beside you,
Could you feel me there?
My arms were wrapped around you,
And I was stroking your hair.

I was talking about all the good times,
For me they were every single day.
I wanted you to feel love and comfort,
And happy in some way.

I watched your every breath,
And prayed that each one wasn't your last.
The time we got to share together,
Went by too quick...Too fast.

I wanted you to wake up,
Please Mum...Open your eyes.
Tell me this is a nightmare,
And not our goodbyes.

As your last breath grew closer,
We lay there peacefully together.
My heart continually breaking,
Because I wanted you forever.

Then there it was,
Your final breath of air.
I didn't want to believe it,
This is so cruel and not fair.

I held your beautiful face,
And prayed you'd breath again.
I wasn't ready for you to go,
I couldn't admit that this was the end.

But then I realized that you were now in peace,
And not suffering anymore.
You were beginning the life of an Angel,
And your body would no longer be sore.

I held you close and squeezed you tight,
And tried to say goodbye.
I've lost my Mum and my number one best friend,
All my heart could do is cry.

I slowly got up,
I wanted so much to stay.
I leaned over and gave you one more kiss,
It was so hard to walk away.

Mum you are my entire world,
And I miss you so very much.
I wish I could feel your loveable cuddle,
And your soft and gentle touch.

But for now I have to wait,
Until we meet again.
You will always be in my heart and thoughts,
My dear Mum and best friend.

Always and Forever,
Our hearts will always touch.
Always and Forever,
Your baby girl loves you so much.

Love,
The iCureASPS family
a beautiful poem from the following site.
Wish I could be the writer but no..

http://www.sheclick.com/poems/our-heart ... cer-poems/

[Bonni Hess]

Dear Debbie,
Thank you for your kind and caring message and for your thoughtful efforts to try to express your sympathy to dear Katrina's family. I don't know how to help you access Katrina's Facebook page other than through "Prayers and Support for Katrina Palmer", but if you were unable to locate it, it may be a closed or private site only available through personal invitation from Katrina. I have no other contact information for her except her personal e-mail address which may no longer be active. Katrina fought her increasingly very challenging battle with enormous and invincible courage, strength, determination, resiliency, positivity, dignity, and ongoing Hope. She was most recently taking Pazopanib in an attempt to shrink/destroy her numerous, widely disseminated, and very large mets and to try to stabilize the aggressive progression of her disease, but tragically the Pazopanib was unsuccessful in doing so and the tumors continued to grow and spread. Unfortunately, based on the failed responses to Pazopanib of dear Katrina and several other of our ASPS Community patients, it appears that Pazopanib is not proving to be as effective a treatment as we had all Hoped it would be. However, it should be noted that Katrina had a huge tumor burden with some very large lung mets in addition to many other mets in other parts of her body, and this may have interfered with the ability of both the Cediranib and the Pazopanib to successfully treat and stabilize her ASPS. The immense courage, strength, and determination with which Katrina fought her very challenging battle will continue to inspire our Hess Family as we continue to fight this insidious disease and to relentlessly seek and search for an effective treatment and cure so that no more precious young Lives will be lost to ASPS, and no more familes will have to face and endure the profound grief of such a tragic loss.
With a very sad and heavy heart filled with the deep sorrow of dear Katrina's devastating loss,
Bonni

[D.ap]

Bonni

I am sure at some point they will revisit..
And then maybe the time will be right for the poem
Thank-you for your efforts. You are truly a saint here on earth

There is no separate female version of the word saint in English. Saint refers to anyone in heaven, which would include females and angels, who have no sex.

Love
Debbie

[Olga]

Katrina was a very special person for our small community. When Astra Zeneca, a company that owns Cediranib patent and was producing it at the time and conducting the clinical trial, decided to stop it as the drug was showing the success in ASPS only and we are a very small group, 'K' has taken an enormous effort to organize a publicity action to shame the company and to persuade them to keep cediranib even though the expected profit did not look promising. Later NCI negotiated some deal with the production of cediranib/clinical trials but without Katrina it would not happen.

[Bonni Hess]

Dear ASPS Community Friends,
As Olga has indicated, we certainly all owe dear Katrina a deep debt of gratitude for all that she did to activate for the continued development, production, and availability of Cediranib. Her pro-active actions and the postive results that she achieved prove that we CAN make a diffference if we make the effort and refuse to take "no" for an answer. Katrina will continue to serve as a great inspiration in this continued very challenging battle not only with this insidious disease but also with negligent incompetent doctors and the profit driven pharmaceutical companies. Her legacy Lives on in the immense courage, strength, determination, passion, positivity, dignity, and continued Hope with which she fought her courageous battle.
Moving forward with the ASPS battle which Dear Katrina tragically physically lost, with an aching heart but still holding tight to continued Hope,
Bonni

[Amanda]

Wow so sorry to hear this (((
i havnt talked to her since we lost Gem
The few times we did speak it was very nice! An she was a fighter!!!!
Many as bonnie posted have a lot to be thankful for now after what she did with the Ced trial an them trying to pull people off even if it was working.
Greedy drug companies! Need to remember now because of the internet they can get a HUGE BLACK EYE when they hurt others with there greed!

I can say she was a great mother who fought to give her child a wonderful life an memories! that says a LOT about her!

Her daughter is so cute an when you see them together you know she did great mommy things with her

https://www.facebook.com/katrina.palmer.758?fref=ts

[Olga]

Today is Katrina's BD. If not for her, the cediranib production would most probably be halted by Astra Zeneca and our deal Brittany Hess and now other patients would be left without their life saving treatment. Remembering her with a gratitude.

[Bonni Hess]

Dear Olga, Thank you for your special remembrance of dear Katrina and acknowledgement of the legacy of all of her activist efforts to prevent Astra Zeneca from discontinuing the development and production of Cediranib. I only wish that she could have been more successful in obtaining adequate, appropriate, and pro-active medical care for herself from her shamefully and inexcusably complacent, irresponsible, and unresponsive to her needs doctors in England. I continue to deeply mourn the tragic loss of her precious young Life, and to celebrate all that she was and all that she did on behalf of our ASPS Community. With immense continued shared sorrow for her tragic loss, and deepest gratitude for all that her efforts with Astra Zeneca did to provide us with continued Hope, Bonni