Sarah's MRI

alutiiqmom

mighty6 said:

tocagen
Dear Edna,

Have you thought of the gene therapy? my friend's mom is currently on Tocagen. She has recurrent GBM. it is been almost seven months since her tumor recurrence! She had some up and downs, but mostly stable so far:

http://www.clinicaltrial.gov/ct2/show/NCT01156584?term=tocagen&rank=2


She has tried Novacure for a few while, but felt it is very inconvenient. But It does no harm, maybe consider that a back-up option? or even have both?

My best wishes to you and Sarah.

-- Jane

Thank you !
Hi

That sounds interesting. I do not know if my daughter would like that Novacure. I will look at that trial. Thank you or helping others . God bless you .

Edna and Sarah

alutiiqmom

cindysuetoyou said:

praying
Dear Edna,

I've been checking all the time for posts about Sarah. Thank you for letting us know what is going on.

I feel pain in my heart and such a sick feeling when I read your words about things being rough. I HATE what you and Sarah are going through. I feel helpless when I try to think of what to write to you. I pray for you all the time, for healing for Sarah and strength and peace for both of you and your family too. I think that's the most important thing I can do for you.

Anyone I know who and almost everyone who I've communicated with regarding brain tumors has had their doctors tell them that "it's not curable and we are just buying time." I HATED hearing that about David. At first it made me limp and almost paralyzed with fear (amazing to think of the power of the spoken word), but after a while, I became angry and mentally I stood up and started fighting back against how those words made me feel. I told myself that we could live with "not curable" and our goal would be to manage it and control it. I told myself that there are a lot of non-curable conditions....much, much more minor ones, like diabetes, asthma, etc that were not curable but people fought back and didn't let those things take over their life. I know that brain tumors are in another realm of seriousness, but it helped me to think like this and fight instead of living in terror. Also, as far as buying time.....I told myself we are all "buying time." I know it's not the same as someone who is fighting brain cancer but I had to think like this so I wouldn't go under. And every day that you "buy" is another day closer to a new treatment option or even maybe a cure. Every day that you "buy" is a day in your favor.

I know it's not much, Edna, but I long to help you in even a small way. All I can think of to do is try to share from my story and hope that I can give you a little strength. I'm so glad that Julia is on this website and researching trials and giving you suggestions. And of course I will continue to pray every day, very hard, for you and Sarah.

Love, blessings, peace and strength to you,
Cindy

Pray without ceasing 1 Thessalonians 5:17
Cindy Sue-

Your words means so much. They are from the heart and they are comforting. This is so scary ! I find myself making plans and/or bargains in my head and I remind myself that we are not in charge here.

Keep praying ! I believe in the power of prayer. I am just finishing up reading "To Heaven and back" by Mary C. Neal, M.D. It is interesting and inspiring. This lady doctor also lost her son and speaks about that .

Thank you for your support . I will let you all know. Tomorrow we go to UCSF pediatric neuro-oncologist. Hopefully soon we will make a choice for Sarah .

God bless you Cindy

Edna and Sarah

wanye

alutiiqmom said:

Sarah is 19
Hi julia

Thank you for your help and kind words. Sarah's reoccurrence is on the right side. They think it cannot be surgically removed because it is deep. Where the tumor begins, it reaches down in her brain. She can have re-radiation for 3 weeks or 15 x. We talked about using avastin or tarceva.
They are running a gene test to see if Sarah has the BRAF mutation. They are also running a protein test for EGFR.

In 2011 most of her radiation was on the left side. There is only a small overlap on the right. Seattle recommends that Sarah do the radiation with the Tarceva. Since we used Avastin before they want to try something different.

U of W offered her the radiation with whatever chemo Seattle gives Sarah and they are offering her the Novacure.

We arrived in San Francisco today. Tomorrow we go to UCSF to hear what they have. We should call UCLA. Our Alaska oncologist called Dr.friedman at Duke before we left and he did not have anything for Sarah. Maybe she does not meet the criteria ? I wonder I'd I should have called him myself.

Thank you and God Bless you .

Edna and Sarah

Hang in there
Dear Edna

I'm new to the board my sister just suffered a recurrence grade 3 astrocytoma. She had grade 2/3 last year. Her doctors are in Delhi India. I'll be praying for Sarah God is able to do much more than we can ever ask. He will guide and encourage you through this journey.May his healing hand be on sarah and may he strengthen you as you stand with her

alutiiqmom

wanye said:

Hang in there
Dear Edna

I'm new to the board my sister just suffered a recurrence grade 3 astrocytoma. She had grade 2/3 last year. Her doctors are in Delhi India. I'll be praying for Sarah God is able to do much more than we can ever ask. He will guide and encourage you through this journey.May his healing hand be on sarah and may he strengthen you as you stand with her

Amen Wayne!
Thank you for your prayers and encouragement. I send blessings to you and your sister.

Edna and Sarah

chicken2799

Edna and Sarah
I am so very sorry to hear this news!! I have not been on for several days, and this is not what I wanted to read. I will be praying for you and Sarah as well as your friends and family. Like you said, "Pray without ceasing!" 1 Thessalonians 5:17

Love and prayers!

Michelle
Mobile, Al

I_Promise

chicken2799 said:

Edna and Sarah
I am so very sorry to hear this news!! I have not been on for several days, and this is not what I wanted to read. I will be praying for you and Sarah as well as your friends and family. Like you said, "Pray without ceasing!" 1 Thessalonians 5:17

Love and prayers!

Michelle
Mobile, Al

Tocagen
Dear Edna,

Jane is right: the clinical trial of TOCAGEN is promising. It is another one I would strongly consider.
Still thinking of your daughter every day. Fight for her and the bureaucracy that comes with the medical system.

love,

Julia

alutiiqmom

I_Promise said:

Tocagen
Dear Edna,

Jane is right: the clinical trial of TOCAGEN is promising. It is another one I would strongly consider.
Still thinking of your daughter every day. Fight for her and the bureaucracy that comes with the medical system.

love,

Julia

Thank you Julia
Hi Julia:
The doc at UCSF went over some trials with us. Sarah would not qualify for the Tocagen or T-cell because her tumor is not resectable. I had emailed Dr. Liau anyway, but did not hear back yet.

Today, we discussed more of what we hard in Washington. It seems the best course of action is to radiate Sarah again with fractionized radiation for 3 weeks and to utilize Avastin at the same time. The doctor here recommended keeping her on Avastin as long as she will tolerate it. We also need to see what the gene and protein tests state. The doctor here still thinks it will come back after all of that due to the nature of what they have seen.

We will go back to Seattle and try this approach. I will continue to pray to God for guidance and for our path. I still believe He is the ultimate healer. He knows what plans he has for Sarah and our family. The doctor here was very very gracious and helpful. She is a blessing to all family's of children with brain tumor. Very dedicated indeed. Our doctor in Seattle is the same way.

I still do not know what I think of the novacure. Maybe this approach will get this tumor and she could try the T-cell later. Pray Julia! I send God's blessings to you and your sister. Thank you for your help.

love, Edna and Sarah

alutiiqmom

chicken2799 said:

Edna and Sarah
I am so very sorry to hear this news!! I have not been on for several days, and this is not what I wanted to read. I will be praying for you and Sarah as well as your friends and family. Like you said, "Pray without ceasing!" 1 Thessalonians 5:17

Love and prayers!

Michelle
Mobile, Al

Thank you Michelle
Thank your for your prayers and comments. It really took us all by surprise and just like the first time, it is a roller coaster ride. We remain in faith. We go back to Seattle tomorrow to do our best to beat this. I hope you are doing good.God Bless you Michelle.

Edna and Sarah

4theloveofmysis

Edna
Im so sorry to hear of this change. Many prayers going your way for Sarah.Praying that the Radiation and avastin will hold this beast back. Over the last few weeks for some reason I have been reliving those days we went through in my mind.This cancer is so unfair.
Take care
Brenda

connsteele

Dear Edna and Sarah, I wish
Dear Edna and Sarah, I wish there was something I could say or do to make this easier for you. I haven't been on this list for a while and I was shocked to learn about this latest setback. It sounds like you both have a strong bond and faith which I know will give you the strength and wisdom on how to proceed. The fact that you are checking in with some of the best NOs and brain cancer centers in the country should give you real hope. You both are in my thoughts and prayers.

Connie
Mother of David
2/28/77-4/14/12

sadinholland

connsteele said:

Dear Edna and Sarah, I wish
Dear Edna and Sarah, I wish there was something I could say or do to make this easier for you. I haven't been on this list for a while and I was shocked to learn about this latest setback. It sounds like you both have a strong bond and faith which I know will give you the strength and wisdom on how to proceed. The fact that you are checking in with some of the best NOs and brain cancer centers in the country should give you real hope. You both are in my thoughts and prayers.

Connie
Mother of David
2/28/77-4/14/12

I will be praying for Sarah
I will be praying for Sarah and your family.

alutiiqmom

sadinholland said:

I will be praying for Sarah
I will be praying for Sarah and your family.

thank you
Hello everyone:

Thank you so much for the prayers. Every prayer makes my heart feel lighter and I just know tha Sarah is blessed to have so many people pray for her. Keep praying and know that it really does matter and it really does help her and her family.

Tomorrow we are going to start setting up her radiation and she may have her first Avastin infusion. I am anxious to start her treatment because her symptoms are just getting worse and worse. Her speech is very impaired and she complains about her vision.

Please continue to pray that the cancer cells will die and her body will renew itself. Pray that her speech will flow freely from her mouth and that her life will be renewed. Please pray for her to have love and hope every day.

I pray for every person that reads this post that they may have God's blessings and life in abundance.

love, Edna and Sarah

BenLenBo

alutiiqmom said:

thank you
Hello everyone:

Thank you so much for the prayers. Every prayer makes my heart feel lighter and I just know tha Sarah is blessed to have so many people pray for her. Keep praying and know that it really does matter and it really does help her and her family.

Tomorrow we are going to start setting up her radiation and she may have her first Avastin infusion. I am anxious to start her treatment because her symptoms are just getting worse and worse. Her speech is very impaired and she complains about her vision.

Please continue to pray that the cancer cells will die and her body will renew itself. Pray that her speech will flow freely from her mouth and that her life will be renewed. Please pray for her to have love and hope every day.

I pray for every person that reads this post that they may have God's blessings and life in abundance.

love, Edna and Sarah

Edna and Sarah,
Our
Edna and Sarah,
Our prayers are for strength, courage and the fight to endure the treatment. May Sarah recover and be whole again.

God our father walk through my house;
And take away all my worries and
illness;
And please watch over and heal my
family;
In Jesus Name; AMEN!

I was given this prayer when Benjamin was diagnoised, we display it on out
fridge, to remind us daily to pray and say thanks for what we have.



(((Hugs)))

Carol

Raani01

BenLenBo said:

Edna and Sarah,
Our
Edna and Sarah,
Our prayers are for strength, courage and the fight to endure the treatment. May Sarah recover and be whole again.

God our father walk through my house;
And take away all my worries and
illness;
And please watch over and heal my
family;
In Jesus Name; AMEN!

I was given this prayer when Benjamin was diagnoised, we display it on out
fridge, to remind us daily to pray and say thanks for what we have.



(((Hugs)))

Carol

Praying for you and Sarah
Dear Edna,
I don't know you have read my posts. I lost my husband this July. Even though I am very sad and miss him somuch , I can tell you, I have an incredible peace in me knowing he was loving and loved by me for 12 years since we learned about his brain tumor (oligo 2 then 3).He took chemo few times during those years and we enjoyed a good life until 2010.So, be strong. Sarah's young age with best treatments, your love,and strong faith will make your daughter better. What really matters is that you love her every moment and she feels your love. Nobody knows what happens to each of us tomorrow,anyway. In my view, a managable illness will bring us a positive perspective and we will learn to appreciate the life and loved ones we have been given.The serenity prayer gives me strength always:
""God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."

with love,
Raani

alutiiqmom

Raani01 said:

Praying for you and Sarah
Dear Edna,
I don't know you have read my posts. I lost my husband this July. Even though I am very sad and miss him somuch , I can tell you, I have an incredible peace in me knowing he was loving and loved by me for 12 years since we learned about his brain tumor (oligo 2 then 3).He took chemo few times during those years and we enjoyed a good life until 2010.So, be strong. Sarah's young age with best treatments, your love,and strong faith will make your daughter better. What really matters is that you love her every moment and she feels your love. Nobody knows what happens to each of us tomorrow,anyway. In my view, a managable illness will bring us a positive perspective and we will learn to appreciate the life and loved ones we have been given.The serenity prayer gives me strength always:
""God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."

with love,
Raani

that is beautiful
Raani:

Thank you. May God Bless you.

Edna and Sarah

alutiiqmom

BenLenBo said:

Edna and Sarah,
Our
Edna and Sarah,
Our prayers are for strength, courage and the fight to endure the treatment. May Sarah recover and be whole again.

God our father walk through my house;
And take away all my worries and
illness;
And please watch over and heal my
family;
In Jesus Name; AMEN!

I was given this prayer when Benjamin was diagnoised, we display it on out
fridge, to remind us daily to pray and say thanks for what we have.



(((Hugs)))

Carol

I like that
Hi Carol:

I need to read that out loud everyday. Keep praying please. God Bless you and Ben.

Love, Edna and Sarah

wanye

alutiiqmom said:

thank you
Hello everyone:

Thank you so much for the prayers. Every prayer makes my heart feel lighter and I just know tha Sarah is blessed to have so many people pray for her. Keep praying and know that it really does matter and it really does help her and her family.

Tomorrow we are going to start setting up her radiation and she may have her first Avastin infusion. I am anxious to start her treatment because her symptoms are just getting worse and worse. Her speech is very impaired and she complains about her vision.

Please continue to pray that the cancer cells will die and her body will renew itself. Pray that her speech will flow freely from her mouth and that her life will be renewed. Please pray for her to have love and hope every day.

I pray for every person that reads this post that they may have God's blessings and life in abundance.

love, Edna and Sarah

Hi

Hi Edna

How is Sarah?praying for you both and asking God for a miracle.

Keep going God bless you both.

Wanye

alutiiqmom

wanye said:

Hi

Hi Edna

How is Sarah?praying for you both and asking God for a miracle.

Keep going God bless you both.

Wanye

update
Hi Wanye and other friends:
Sarah had her first radiation treatment and her Avastin this week. She is doing ok. Her speech and swallowing is very impaired. It is hard for her to drink any liquid. Her spirits are up and down. She has 14 more radiation treatments. They will do Avastin every 3 weeks. Thank you for checking on her. Please keep praying for her!

God Bless you all.

Edna and Sarah

connsteele

alutiiqmom said:

update
Hi Wanye and other friends:
Sarah had her first radiation treatment and her Avastin this week. She is doing ok. Her speech and swallowing is very impaired. It is hard for her to drink any liquid. Her spirits are up and down. She has 14 more radiation treatments. They will do Avastin every 3 weeks. Thank you for checking on her. Please keep praying for her!

God Bless you all.

Edna and Sarah

Praying for you and Sarah
Praying for you and Sarah that the radiation and Avastin kicks the tumor's butt big time! I'm sure that your docs have cautioned you about the swallowing issue? Our son David developed swallowing issues and started choking on his food. What we didn't realize at the time was that he was aspirating very small amounts of food and/or fluids into his lungs when he was choking, resulting in aspiration pneumonia, which is very serious. We started too late thickening his fluids and puréeing his foods. We really felt (and still do) bad and guilty about not catching this in time. Perhaps we could have given him more time with us.

Please take care and give my love to Sarah. I know she is one tough and amazing gal!

Connie
Mother of David
2/28/77-4/14/12
DxAA3 April 2011

alutiiqmom

connsteele said:

Praying for you and Sarah
Praying for you and Sarah that the radiation and Avastin kicks the tumor's butt big time! I'm sure that your docs have cautioned you about the swallowing issue? Our son David developed swallowing issues and started choking on his food. What we didn't realize at the time was that he was aspirating very small amounts of food and/or fluids into his lungs when he was choking, resulting in aspiration pneumonia, which is very serious. We started too late thickening his fluids and puréeing his foods. We really felt (and still do) bad and guilty about not catching this in time. Perhaps we could have given him more time with us.

Please take care and give my love to Sarah. I know she is one tough and amazing gal!

Connie
Mother of David
2/28/77-4/14/12
DxAA3 April 2011

I did not know that
Hi Connie:
Thank you for letting me know this concern. I know that people can aspirate if they choke, but they did not warn us about her aspirating small bits of her food. Sarah does not like the thick it stuff. It sounds like we should make her use that?
She already chokes on her food. I was hoping that the radiation will resolve some of these symptoms she has, but maybe it will not.
This is so scary. I know you know how hard it is to watch your child suffer! It breaks my heart every day.
I hope you are doing ok? I am sorry for all of the suffering you have been through and for Cindy Sue as well.
May God Bless you today. Thanks for the heads up.

Love, Edna and Sarah