Brittany on Cediranib trial Phase 1 in Edmonton

[Jorge]

Bonnie and the family,

How wonderful news! I'm so glad for you and you. Look forward to more good news from you!

Love,
Lynette

[Bonni Hess]

Thank you dear Lynette. Brittany has her annual full body bone scan in Seattle this Thursday so Hopefully I will be able to share more good news of continued stable disease and no new tumors. My continued most caring thoughts, very best wishes, and love are also with dear George and you. Take care.
With deepest gratitude for your special kindness and caring, with healing wishes for George, and with continued Hope,
Bonni

[D.ap]

Brittany and Bonni and family

Lots and lots of good vibes coming your way on the up and coming bone scan this Thursday .

Much love
Debbie and family

[Bonni Hess]

Dear ASPS Community Friends,
Very thankfully we received additional very good news from Brittany's May 1st annual full body bone scan in Seattle with the following results and conclusion stated in the radiologist report:
"Stable bone scan without scintigraphic evidence to suggest new skeletal metastatic disease at this time"
Our joyful celebration and deepest gratitude for Brittany's five years of disease stability continues .
With a heart filled with great happiness, special caring thoughts and healing wishes for everyone, and continued Hope,
Bonni

[D.ap]

Bonni and Brittany and Family

Great news !
Thanks so much for including us in your celebration.

How often does Brittany receive Bone scans?

Much love
Debbie

[Bonni Hess]

Dear Debbie,
Thank you for your very thoughtful and caring response to Brittany's very good bone scan results . Brittany has a full body bone scan once a year in addition to having chest CT's and abdominal, pelvic, brain, and spinal MRI's every three months as part of our vigilant scan schedule to try to ensure that any new mets are found at the smallest and most treatable size which is critically important in fighting and managing this very challenging and unpredictable disease.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
The sun is shining bright on this beautiful summer day in Seattle and the day was made even brighter and more beautiful for our Hess Family with the VERY GOOD AND RELIEVING!!!!! preliminary results of Brittany's today's three month monitoring brain and spinal MRI's at the University of Washington which in the preliminary review very thankfully showed continued stable disease with no visible new brain or spinal mets Based on Brittany's now five+ years of disease stability, Dr. Rockhill, Brittany's very knowledgeable and caring radiation oncologist for the past ten years, is recommending that we now schedule Brittany's brain and spinal MRI's every four months instead of every three months since he is concerned that she could possibly develop an allergic reaction to the contrast used for the MRI's with the frequency and number of MRI's which Brittany has had and continues to have. We have agreed to try Dr. Rockhill's recommended four month brain and spine MRI schedule, although admittedly with some trepidation given the unpredictablity of this insidious disease which requires vigilant monitoring to diagnose new mets at the smallest most treatable size.
We remain deeply grateful for the continued sustained disease stability that Cedianib has provided for Brittany thus far, and for the ongoing special caring and strengthening support of those of you on this Board. Take care everyone, enjoy a wonderful summer, know that my deepest caring, my most positive thoughts, and my healing wishes are with all of you, and keep in touch with the Board as you are able.
Savoring the special joy that today brought with a heart filled with immense happiness, great relief, deepest gratitude, and continued Hope,
Bonni

[MarietjievdMerwe]

Bonni!
What fantastic news! You must be over the moon with joy.
Special hugs.
Marietjie.

[D.ap]

Bonni and family

Thanks for sharing the good news!
We are so happy to hear it !
Give yourselves hugs from the Josh P
Family please

Love
Debbie

[Amanda]

I love reading these posts ))
I am beyond happy an so proud of her an the fight she has fought!
My prayer is soon they will say we check in a way an we are convinced the cancer in her body is now dead! We are taking her off the medication an she
will have a long an wonderful life like others who have also been lucky enough to kill this devil!

I ask a lot in my hopes but it is seeming to be close to this at this point isn't it?

[Bonni Hess]

Thank you dear Marietjie, Debbie, and Amanda for so graciously sharing Brittany's good scan results with so much genuine joy and special caring which truly touches our hearts and amplifies our great happiness. Amanda, we too wish that there was a way for the the doctors to definitively determine if Brittany's disease stability is permanent and if her ASPS could be considered "cured", but there is apparently no way of knowing without taking her off of the Cediranib and risking disease progression which we are obviously unwilling to do. If we did decide to discontinue the Cediranib and Brittany heartbreakingly developed disease progression, she would tragically be unable to resume taking the Cediranib to try to re-stabilize her disease since that would not be allowed by the Clinical Trial protocol and Cediranib is not currently available off Trial as a prescribed drug since it has not yet been FDA approved. As Dr. Sawyer in his great wisdom and expertise has told us, Brittany may be macroscopically tumor free, but unfortunately probably not microscopically, so she will continue taking the Cediranib as long as she is having a successful response to it, as long as it is available, and until a permanent ASPS treatment and cure is found. In the meantime, we celebrate each day as a victory and Brittany continues to Live Life to the fullest (within the limitations created by her severe and chronic spinal pain and the chronic debilitating side effects of the Cediranib) with great passion, appreciation, and determination sharing it together with her wonderful fiance' Tim, her two faithful and beloved Shih-tzu puppies, and all of us who love her so deeply and cherish each day that she is here in this World with us.
With deepest gratitude for your special caring and strengthening encouragement and support, with healing wishes for all of our ASPS Community patients, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
I am so sorry to have been absent from the Board for the past few weeks but I was away from the computer with preparation and activities for the Annual Taterfest Celebration of our beloved oldest son Tate's Life and the many visiting family members and friends who came to attend it. Although I have been unable to visit and participate on the Board you have all been very much in my heart and my most caring thoughts as always.
We just returned from Edmonton, Alberta very late last night after VERY thankfully receiving continued VERY GOOD NEWS!!! of continued stable disease and no new tumors from Brittany's 63 month Clinical Trial chest CT and abdominal/pelvic MRI. Based on Brittany's thus far five years and three months of continued sustained disease stability since beginning the Cediranib Clinical Trial, our increasing concerns about the amount of radiation that Brittany has received from CT scans during the past 13 years since her ASPS diagnosis, and the physical and financial burdens of traveling to Edmonton every three months for the Clinical Trial scans, we requested that Dr. Sawyer request permission for Brittany to have the Clinical Trial scans every four months instead of every three months which he very thankfully and kindly agreed to do. We remain deeply grateful to Dr. Sawyer for his special caring, dedicated care, and gracious willingness to act in Brittany's best interests and to work together with us to address our concerns and accomodate our requests. We are of course somewhat nervous about expanding the amount of time between scans knowing far too well the unpredictable nature of this insidious disease and the known risk of developed resistance to the Cediranib followed by aggressive disease progression, but since Brittany is also having brain and spinal MRI's every four months in Seattle which will overlap the proposed four month chest CT and abdominal/pelvic CT schedule in Edmonton, if any new tumors heartbreakingly develop in any of those areas and are seen on any of the scans, we will then of course immediately schedule scans for the other areas of her body to more closely evaluate the situation. In the meantime, we are celebrating with greatest happiness, immense relief, and strengthened Hope the VERY good and encouraging scan results which we received yesterday, and are enjoying a beautiful sunny Summer day made much brighter by the great joy of the wonderful news of continued disease stability . Take care everyone and know that I am thinking of each one of you with deepest caring and healing wishes.
With a heart filled with much happiness, special caring thoughts, and continued Hope,
Bonni

[D.ap]

Bonni and family

What great news !
Thanks so much for including us all in such wonderful news.
I am so happy to hear the news and also to hear of your celebration with family and friends in remembering your son.
Good night and continued sweet dreams

Much love ,
Debbie and family

[Amanda]

Bonni
::snoopy dancing:::

I remember when she started! Wow, it has been a long time an this is wonderful <3
How is she feeling?

[Arch]

I'm so happy to hear about Brittnay's continued success on cediranib.
So happy for you Bonni!

Arch