Patti from Houston TX - Dx June 2012 - RIP Aug 20 2012

[Trixi]

Thank you so very much for your sweet lines, Bonnie. We are still so stunned and the grief is nearly unbearable at times. It is incredible how in just a few months time ASPS has attacked and hurt our family and circle of friends. None of us had ever even heard of it until Patti's diagnosis. Patti was not a healthy person. Ever since her first major surgery at the age of 15 (tumor removal), she's had multiple health issues and surgeries. Perhaps - in retrospect - many as a result of doctors not really knowing what's wrong with her, hoping that removing this or that in her body would cure her. One can only assume that if indeed Patti has had ASPS for many years, then perhaps some of her pain and feeling bad was due to ASPS all along. Who knows? It just shows that even the best doctors at the best hospitals are sometimes stumped. Here in Houston we do boast to have some of the best doctors and facilities in the country, and yet there is room for so much more research and learning.

I will mention one other thing, though, again in hopes that it may be helpful to somebody.... because of the slow growing nature of ASPS. Of course the tumors inside the body were not visible and we know nothing about their growth rate, they could not be seen but sometimes they could actually be felt. They sometimes caused a "buzzing" sensation in Patti's body that others could feel as well by touching her. Another thing might be worth mentioning is that Patti did have some tumors that could actually be seen and observed, and they grew very fast on her skull. In the time frame of 4-5 weeks, right after the tumor in her groin was removed, she got several bone tumors on the back of her head. They literally came up from nothing and grew to one and even one and a half inches in diameter within a month's time. These tumors were hard initially but the last week or so of Patti's life they became mushy. Very strange. Since Patti was home on hospice, no evaluation or doctor's opinion was obtained on the change of these bone tumors. I read somewhere (perhaps here in this forum) that the removal of a primary tumor may speed up growths of other tumors (mets). Anyway... everything I share I do in hopes to shed light on ASPS, not for any other reason.

I am so saddened to learn about your children, Bonnie. I am so sorry that you lost your son and I can't even imagine how hard it must be to fight the fight for another one of your children against ASPS. I'm happy that Brittany is holding her own and that ASPS is checked and under control in her body. I admire your dedication to the fight against ASPS. You are doing a wonderful thing, and I hope with all of my heart that some day ASPS can be completely cured.

Thank you for pointing me to the Compassionat Friends group. I will certainly check them out. I have always heard that losing a child is the most horrible and most painful thing that can happen to a parent. Well, Jerry and I are finding out that it is true. Keep up the good fight, Bonnie, for Brittany and for all the precious people who are diagnosed with this terrible disease. I will certainly keep all of you in my prayers now that I know more about ASPS than I personally ever cared to find out about it. But now that I know, I will join you in the fight !!

[Bonni Hess]

Dear Trixi,
I am deeply humbled by, and in awe of, your incredible emotional strength and ability to write to so graciously share information about dear Patti's perplexing symptoms during her ASPS battle, and to reach out to so thoughtfully express your special caring and compassion to me and for Brittany with your kind words in the midst of your own devastating loss and unbearable grief. You are a truly remarkable woman, and your shared information, strengthening support, and willingness to continue fighting the ASPS battle for others is deeply appreciated and I am extremely grateful to you.
I have never personally heard about any other ASPS patients having had the very strange tumor "buzzing" symptoms and extremely rapid and aggressive skull mets growth and developed mushiness of the tumors that you described. Given my knowledge of, and eleven years experience with ASPS, this is very perplexing. If anyone else on this Board has experienced any of these very unusual and atypical symptoms, or is aware of any ASPS patient who has, it would be very helpful if you would write to share your information. This underscores to me how many unknowns that there are with this extremely rare and very challenging disease, and how critically important any and all shared information is.
I know that tomorrow will be an especially difficult day for you, your dear family, and all of those who knew and loved your precious Patti as you gather together to lay her to rest and to remember and celebrate her Life and all of the special beauty and joy that she brought to your Lives and this World. Please know dear Trixi that I will be there with you in heart and thought and deeply sharing your profound sorrow with endless tears, deepest sympathy, and the special understanding of a bereaved mother who truly knows and feels your pain. Please know too that I am here for you to talk with, to cry with, or to listen anytime that you may want or need someone who truly understands, and feel free to call me anytime at 425-829-3210.
Reaching out to embrace you with gentle hugs and deepest caring, and holding you, your family, and your beloved angel Patti very close in my aching heart,
Bonni

[miller]

Dear Trixi,

Coming back to this site after a few weeks away, I was shocked and devastated to see that your beautiful Patti has gone from you. My heart goes out to you, and to her husband and children, and to everyone else whose life she touched - which sounds like a very large circle. Bonni's saying that the best gift is a life well led is so beautiful and apt: I hope that's something you can hold on to as you grieve. Now you've had her memorial service: I'm sure that was an incredibly moving and special day, and that it brought you some healing as you came together to celebrate her life.

Sending you all strength and loving thoughts,

miller
x

[Trixi]

Thank you for your kind words, Miller & everyone else.
We miss Patti so very much.

[D.ap]

Dear Trixi,

My name is Debbie and my(our) son is Josh in the personel section. Josh was dx in September of 2012. We've been so blessed and fortunate to of rid his tumor load of the primary as well as both of his lungs of over 140 tumors.
I've Patty's story over and over..Please accept my condolences to you and your family.
Please also accept our families heart felt "thank-you" for all the information that you were able to so unselfishly share in such very, very sad time.
I hope this letter finds you feeling stronger as well as able to remember Patty with so very happy memories.

With our heart felt love,
Debbie and family

[Trixi]

Thank you all so much for your condolences. Each post meant a lot to me.
It has been 2 years and 2 1/2 months since Patti left us, and we are approaching our 3rd Christmas without her. It's hard. She is still very much missed as a wife, mother, daughter, aunt, friend.... etc. Those who have experienced a significant loss know.....
I check in to this site occasionally in hopes to read good reports and success stories of people beating this monstrous disease.
I was surprised to find a recent post on Patti's page. Thank you kindly.
Our family's horrendous experience with ASPS was brief. There was no time to treat the ASPS that had taken over in Patti's body.
So many who post on this forum are fighting such courageous battles. Keep fighting. Conquer and be victorious over ASPS !!!!
My thoughts and prayers are with you all and your families.
Best wishes,
Trixi - Patti's mother

[Bonni Hess]

Dearest Trixi,
It was so very good to hear from you and so very kind and gracious of you to write with your special words of caring, support, and encouragement for those of us who continue to fight the very challenging battle with this insidious disease which so tragically took your beloved Patti's precious Life two years and two and a half months ago. Having devastatingly lost our beloved oldest son in a tragic vehicle accident nine years, four months, and three weeks ago, I know far too well the endless pain and tears of each moment of your continued grief journey, and my heart breaks for all that I know far too well that you and your family continue to go through. Although dear Patti's short but courageous ASPS battle is over, she and your family will always be a very special part of our ASPS family and no matter how long it is between our communications with each other, you remain closely held in my aching heart and my most caring thoughts. May you and your family have a peaceful Holiday season and may you find comfort and joy in cherished and happy memories of those treasured Holidays shared together with your beloved Patti. I don't know if you have connected with the Compassionte Friends organization which is an international support group for parents and families who have lost a child of any age to any cause, but if you are interested you can obtain information about Compassionate Friends at CompassionateFriends.org. On Sunday, December 7th there is a Worldwide Candle Lighting Ceremony which can be attended at local Compassionate Friends meetings in your area, or done in the privacy of your Home or wherever you choose to light a candle at 7:00 P.M your local time in memory and celebration of the Lives of all of those precious children who have left this World too soon. It is a very powerful event that creates a wave of candle light that circles the globe to let the World know that our beloved children are not, and never will be, forgotten.
Please take care of your dear self Trixi and feel the embrace of my warm hugs, my continued shared deepest sympathy, my caring thoughts, my warm friendship, and my love,
Bonni

[Amanda]

Dear Trixi
I am so sad to hear a asps sister has lost this horrid fight
As a mother I cannot fathom the pain you are both in! With all my heart I send love to my sister that has crossed over. An to you an your husband I send love an hugs!
I am glad you are talking to Bonnie an others being with others mommies <3

God bless your whole family an Patti

[D.ap]

Thank you all so much for your condolences. Each post meant a lot to me.
It has been 2 years and 2 1/2 months since Patti left us, and we are approaching our 3rd Christmas without her. It's hard. She is still very much missed as a wife, mother, daughter, aunt, friend.... etc. Those who have experienced a significant loss know.....
I check in to this site occasionally in hopes to read good reports and success stories of people beating this monstrous disease.
I was surprised to find a recent post on Patti's page. Thank you kindly.
Our family's horrendous experience with ASPS was brief. There was no time to treat the ASPS that had taken over in Patti's body.
So many who post on this forum are fighting such courageous battles. Keep fighting. Conquer and be victorious over ASPS !!!!
My thoughts and prayers are with you all and your families.
Best wishes,
Trixi - Patti's mother

Trixi

God bless
My Love to you and yours always

Debbie, Joshua's mom