Matt from Florida - Dx 2009 - RIP June 8 2013

[Bonni Hess]

Hello again Wendy,
Thank you for the clarification on my mistake about the measurement. I am grateful that Matt had the other scans done in December because I don't have very much confidence in PET scans having experienced a false reading on one of Brittany's brain PET scans in 2005 which erroneously indicated possible re-occurrence of her brain mets in the resected tumor bed when it was just residual inflammation.
I did receive your thoughtful private message and sent you a response which you have Hopefully now received. If you do follow through with a consult with Dr. Butrynski, please tell him "HELLO" from all of us Hesses in Seattle. He is a very knowledgeable, kind, caring, compassionate, and devoted sarcoma oncologist, and I am Hopeful that he will be able to provide some different treatment options for Matt. Please take care Wendy, and keep the Board updated as you are able.
With deepest caring, special thoughts, healing wishes for Matt, and continued Hope,
Bonni

[wendik]

June was a particularly terrible month for ASPS patients and their loved ones. My darling son and best friend Matt passed away on June 8, 2013. His pain and suffering is blessedly over.... but I miss him SO much.


Wendy

[D.ap]

Wendy
I am so sorry to hear of your loss. To loose a son..
We did not know Matt however our heart and souls go out to you and your families
Please accept our condolences
Debbie P

[Amanda]

dear Wendy,
I am so sorry an i cant even fathom how you feel an what you are going thru! You have families here though that are here for oyu if you need to talk!

I am broken hearted that we have lost Matt
Added too the others! Its been a horrid time!

May he rest in loving peace!

Sending you hugs and love!

[Ivan]

June was a particularly terrible month for ASPS patients and their loved ones. My darling son and best friend Matt passed away on June 8, 2013. His pain and suffering is blessedly over.... but I miss him SO much.


Wendy

... more horrible news

[MarietjievdMerwe]

Dear Wendy,

This is so sad, i truly am sorry for your loss.

Kind regards.
Marietjie.

[Bonni Hess]

Dear Wendy,
I am so sorry to be so slow in writing to express my deep sympathy for the devastating loss of your beloved Matt. I have been away from the computer for the past week due to the 7th Annual Celebration of our beloved oldest son Tate's Life, and was just able to get back to visiting the Board today. I am numb with sorrow, my heart is filled with overwhelming grief, and my tears are endless for the tragic losses of dear Matt, LCMA, and Jordanne who all devastatingly lost their very courageous ASPS battles in June. I can only try to find some comfort in knowing that their pain and suffering is over, their precious young bodies are now free from this insidious disease, their invincible spirits are victorious, and they Live on forever in cherished memories and the broken hearts of everyone who knew and loved them so very much.
It was so very thoughtful of you to update the Board with this extremely difficult news in the midst of your immense grief. Although you haven't participated on the Board for the past couple of years, dear Matt, you, and your family have been held very close in my heart and my continued most caring thoughts, and my greatest Hope was that no news was good news and that Matt was doing well and that the progression of his disease had been stabilized.
At some time when your grief, time, and the situation allow it would be deeply appreciated if you could share information with the Board regarding whether Matt was being/had been treated with Pazopanib (Votrient) as I know that both LCMA and Jordanne had been. Heartbreakingly they both had failed responses to the drug and based on the rapid progression of both LCMA's and Jordanne's ASPS despite their Pazopanib treatment, I have increased concerns about Pazopanib. If somehow information can be shared about successful treatment results or failures for ASPS patients who are treated with Pazopanib, it may help to save other precious young Lives and the profound grief that your family, LCMA's, and Jordanne's are now suffering.
Heart to heart with my deepest sympathy, most special caring, and greatest shared sorrow,
Bonni

[jcs2007]

The news regarding the loss of Matt and the others in June is very sad and my heart goes out to each of their family members. I will continue to keep all those affected with this insidious disease in my prayers. I regret not contacting my fellow Floridian and so very sorry for your loss because we our in this fight against asps too with our son.

[D.ap]

Hello Wendy and family,

I hope the month of June brought you more smiles and less tears.
Thinking of you today.

Love,
Debbie P. Joshuas mom

[wendik]

Debbie,

Thanks so much for thinking about us. I don't often check the forums anymore because it is just too painful.
We are still grieving deeply, missing our boy. No one knows how this affects you until you go through it. It is the club that no one wants to belong to.
I continue to be grateful for the support that these boards provided to me.
Still praying for a cure, as no child, parent or sibling should have to suffer as we did.

Thanks again

Wendy