Sarah and Edna?

cindysuetoyou

Hello, Edna.

I've been watching here on csn and on caringbridges and I haven't seen a post from you since the 5th. Sometimes I miss things....I'm hoping that you are back home in Alaska and that things are improving for Sarah and for you and your family. If you have a moment, could you send a little post and let us know how Sarah is doing?

I think about you and Sarah a lot and I'm praying for a good report.

Love and blessings, always,
Cindy

connsteele

I second that Cindy. I too
I second that Cindy. I too have been thinking about you all, Edna and Sarah, and hoping things are going better.
Connie

alutiiqmom

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

I_Promise

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

Dearest Edna
I send you all my love. There are no words that can alleviate your suffering. But at least know this: you are not alone. My heart mourns for Sarah and I will always remember her. As far as your husband relationship with God, I understand. My sister who has anaplastic astrocytoma stopped believing in a God that could allow this to happen to her: "why me? why not the child molester or Hitler?." Cancer and God can have a complex relationship.

I love the picture that you have of her on your profile. She is gorgeous and she has the prettiest smile. I will be thinking of her every day.

with love,

Julia

connsteele

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

My heart is aches for you and
My heart is aches for you and your beautiful Sarah. I know how hard it is. When we were at this point with our son, I remember something the Hospice Chaplain said, who herself had lost a son at 19, so she truly understood. She said, "now, you are walking on holy ground," and that is so true. His last week was very peaceful. And on his last 2 days, we are pretty sure he was surrounded by loved ones who had gone before as he was pointing to a corner of the room alot (he couldn't talk at that point). After he passed, the expression on his face was one of peace..he looked like he was about to break into a smile. Now, I am no longer afraid of death because I know it is a transition to some better place. I truly believe our young ones, when they get to this point, have an inner strength and peace that is so much greater than our own. I would say courage too...but to me, courage denotes that there is some fear, and I truly believe our son was not afraid.

For us left behind, it is really hard. It has been 8 months but it seems like yesterday. We do have some really down days and then some good days and even find times to laugh, but there is always the thought of our David in the background. I do encourage you to get hospice involved....we had them for a month and they were wonderful, met his and our every need quickly and with great compassion.

I don't know where God fits into all of this. I do believe in a transcendent God, but I don't think it is his will for things like this to happen to such good people. You might want to read "When Bad Things Happen to Good People" but a Rabbi Krushner (sp?). It helped me alot. The hard cold fact is that everyone has to die, it's the natural order of things. But I will never be resigned or comfortable with the fact that a child of mine (or anyone's child..even your precious Sarah) had to go first. It is so unfair.

Please take care and keep in touch as you feel able. Hugs and prayers,
Connie
mother of David
2/28/77-4/14/12
dx AA3 4/2011

cindysuetoyou

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

so heartbroken
Oh, Edna, I read this post and wept for a long time. I have been living my days, one foot in front of the other, with you and Sarah on my heart and mind. Crying and praying for you. Your last words in your text....Sarah being your firstborn, your beautiful, tall, strong basketball player....they kept going through my mind. I feel your pain. I feel the same about David....my tall, lean, athletic, strong son, laughing and teasing and loving me and our family, and how broken we are that he isn't here any more. My heart twists in my chest, thinking about what you are going through.

So many times I've wished that I had the right words, but now more than ever, I wish I could say something that would help you. I too do not understand God, but even through all of our sorrow and heartache, I never stopped trusting in Him. Even though David wasn't healed, I still trust God. He is trustworthy, Edna. I have fought hard to remember that this life is not all that there is. This life is not reality...eternity is reality. I try to focus on David as he is now...free and no longer in pain or suffering, no more fear or worry, no more bad news. No more sorrow. No more cancer. But I have to be honest...even though I believe this and I am so grateful for this knowledge, sometimes it's just not enough to help me right now, here in this life, and I cry and cry until I'm physically sick with grief. But I know that God understands how I feel. God understands what it's like to lose a child, and I have this sense that God weeps with me over the loss of David. And I know that God's heart is broken over Sarah. The reality is that we all live in a broken, damaged world. But one day we will all be in a better place. For right now, I just have to try to live one moment at a time. Just doing the right things that I have to do. I don't think about what the next day or even the next hour will hold.

Edna, you say that you don't know if you can handle this, and that Connie and I were strong. I felt (feel) like I can't handle what happened to David...I feel so very weak. But one does what one has to do. You just have to get through one day at a time. You have strength inside that you don't even know that you have. And God won't leave you....He will be your strength and your refuge. I love this Scripture: "God is close to the brokenhearted; he rescues those whose spirits are crushed." Psalms 34:18. That's how I feel....brokenhearted, with a crushed spirit. But I know that God is my rescuer.

I'm thinking about you all the time, and praying for you and Sarah and your family.

Love and blessings and peace and strength to you,
Cindy

PS Please don't feel any pressure to post---I know that it's hard to write when you are so sad and heartbroken. But please keep me (us) updated whenever you feel like you can.

Ninamom

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

your path

I just found this site.  I am sorry that you must go through this.  I  pray God will help you through this time. I have a daughter who has been diagnosised with a GBM.  i believe that moms have a heart that goes beyond anyone else. Please know that I will pray for you and your family daily. You will be able to handle it, you are stronger than you know.

PBJ Austin

Dear Edna

I've been following your story for some time now.  I just read this update and my heart is breaking for you and your family.  It's so hard to be in a situation like this and it's even harder around the holidays.  I pray for strength and peace for you and everyone on this board.

Pam

 

PS  I love your profile pic, she got her beauty from her Mom.

Agnessa

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

Dear Edna,
Please stay strong

Dear Edna,

Please stay strong for your family and for yourself. I was just reading the kind message you sent me in November, and I wish I could offer you the same in return. You have been amazing and brave for so long, now keep the strength and know that you are not alone.

wanye

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

Peace be still

 Dear Edna

 

I'm so sorry to hear things have been so difficult. May the God of peace and mercy uphold you through each day. And in the storm may you see and feel his hand and comfort.

I continue to pray for you and Sarah may God be merciful to hear all our cries

 

alutiiqmom

wanye said:

Peace be still

 Dear Edna

 

I'm so sorry to hear things have been so difficult. May the God of peace and mercy uphold you through each day. And in the storm may you see and feel his hand and comfort.

I continue to pray for you and Sarah may God be merciful to hear all our cries

 

Thank you

Thank you

Every prayer, all of the love and kindness truly does lighten this burden .

 

may you be blessed and find Gods favor every day 

 

love, edna and Sarah 

BenLenBo

alutiiqmom said:

Thank you

Thank you

Every prayer, all of the love and kindness truly does lighten this burden .

 

may you be blessed and find Gods favor every day 

 

love, edna and Sarah 

Edna and Sarah,My prayers

Edna and Sarah,

My prayers for comfort are being said daily.  This disease is horrible, and nobody should have to fight so hard

to live.  May the medical profession and researchers find a cure for all, to end this needless suffering by such

loving people.  May you both be wrapped in the loving arms of our savior, in comfort.

   To My Child:

     * When I tell you, I love you, I don't say it out of habit,

or to make conversation.

      * I say it to remind you that your the best thing

that ever happened to me.

 

((((HUGS))))

Carol and Benjamin

alutiiqmom

BenLenBo said:

Edna and Sarah,My prayers

Edna and Sarah,

My prayers for comfort are being said daily.  This disease is horrible, and nobody should have to fight so hard

to live.  May the medical profession and researchers find a cure for all, to end this needless suffering by such

loving people.  May you both be wrapped in the loving arms of our savior, in comfort.

   To My Child:

     * When I tell you, I love you, I don't say it out of habit,

or to make conversation.

      * I say it to remind you that your the best thing

that ever happened to me.

 

((((HUGS))))

Carol and Benjamin

Thank you carol and Ben

Hello all

sarah is still fighting. She truly is a warrior. As a child she was very tough and a good athlete. We are at home and have brought in Hospice. The nurses are very good and compassionate. She is slipping more and more . She sleeps mostly and is alert less. We see changes in her circulation.

we remain in faith but our hearts hurt so bad it physically hurts 

may god bless each of you 

God is ggood love, edna and Sarah 

connsteele

alutiiqmom said:

Thank you carol and Ben

Hello all

sarah is still fighting. She truly is a warrior. As a child she was very tough and a good athlete. We are at home and have brought in Hospice. The nurses are very good and compassionate. She is slipping more and more . She sleeps mostly and is alert less. We see changes in her circulation.

we remain in faith but our hearts hurt so bad it physically hurts 

may god bless each of you 

God is ggood love, edna and Sarah 

Edna and Sarah, I have been

Edna and Sarah, I have been thinking of you both and you are in my prayers. I also pray that the remaining time you have together on this earthly plain will be peaceful. I know Sarah can feel your love and that she can see the angels and loved ones who have gone before gathered round her, waiting to welcome her home. I know our son did. This is a holy time.

Hugs to you both,

Connie

mother of David

2/28/77-4/14/12

dxAA3, 4/14/11

PBJ Austin

alutiiqmom said:

Thank you carol and Ben

Hello all

sarah is still fighting. She truly is a warrior. As a child she was very tough and a good athlete. We are at home and have brought in Hospice. The nurses are very good and compassionate. She is slipping more and more . She sleeps mostly and is alert less. We see changes in her circulation.

we remain in faith but our hearts hurt so bad it physically hurts 

may god bless each of you 

God is ggood love, edna and Sarah 

Hospice

I am so glad Hospice is here for you during this most challenging time of life.  Hospice was an absolute godsend when my father-in-law was making his transition into the next world.  Hospice workers are like angels on earth who come into our lives to ease the pain.  Sending you warm hugs and many prayers.

Pam

wanye

alutiiqmom said:

Thank you carol and Ben

Hello all

sarah is still fighting. She truly is a warrior. As a child she was very tough and a good athlete. We are at home and have brought in Hospice. The nurses are very good and compassionate. She is slipping more and more . She sleeps mostly and is alert less. We see changes in her circulation.

we remain in faith but our hearts hurt so bad it physically hurts 

may god bless each of you 

God is ggood love, edna and Sarah 

Comfort and peace

Dear Edna

 

May God continue to hold you in his love and mercy through this difficult time. And may he heal your hurt and pain.

 

Praying for you both

sadinholland

PBJ Austin said:

Dear Edna

I've been following your story for some time now.  I just read this update and my heart is breaking for you and your family.  It's so hard to be in a situation like this and it's even harder around the holidays.  I pray for strength and peace for you and everyone on this board.

Pam

 

PS  I love your profile pic, she got her beauty from her Mom.

Thinking about you and Sarah

Thinking about you and Sarah and your family. I will continue to pray for all of you. God Bless!

 

cindysuetoyou

sadinholland said:

Thinking about you and Sarah

Thinking about you and Sarah and your family. I will continue to pray for all of you. God Bless!

 

me too

I've been thinking about you and Sarah, and praying for you. Knowing what pain you and your family are in and hating it for you. May God cover you and your family with mercy and grace.

Love and blessings, always,

Cindy

4theloveofmysis

alutiiqmom said:

update
Hi Cindy and Connie:
Sorry. I have been too sad to post on either CSN or caringbridge. We made it home on December 8. Sarah is slowly slipping away from us. She cannot talk, swallow or walk. She is incontinent at times. She sleeps more and more. She is losing that luster in her eyes. My heart is broken.
Seattle told us before we left that we should get in touch with Hospice. We have not done that yet. We are just taking care of her between the tears. We told her brother and sister and we all cried.
I am sorry I am not able to post. I am at a loss of words. They did 15 radiations and 2 infusions of Avastin, but her symptoms continue to worsen. This time has been quick and swift. This is a agressive cancer and Seattle agrees with that.
We have home therapy scheduled and we actually have Avastin scheduled for Dec. 27, but we don't know if that is a good idea or not. Seattle does not think we should treat her anymore, Anchorage is willing to do the infusion.
I continue to pray. My husband is angry and doesn't understand God. I do not understand but I am more grief stricken and panic stricken. I truly don't know if I can handle this. I think of how strong both of you ladies are and were. I don't know how you did it.
This is my first born, my beautiful, tall, strong, basketball player. She got the prettiest smile in her senior class. And she is a beauty. My heart is ripped in shreds. My children all cry. Please pray. Pray for love and hope. Pray for our guidance on how to treat Sarah. God Bless you all.
Edna and Saraah

Dear Edna

I have not been on here in a while, just to painful. I am so sorry to here about the changes with Sarah. My prayers are with you.

love Brenda

nempark

alutiiqmom said:

Thank you carol and Ben

Hello all

sarah is still fighting. She truly is a warrior. As a child she was very tough and a good athlete. We are at home and have brought in Hospice. The nurses are very good and compassionate. She is slipping more and more . She sleeps mostly and is alert less. We see changes in her circulation.

we remain in faith but our hearts hurt so bad it physically hurts 

may god bless each of you 

God is ggood love, edna and Sarah 

Sara and Edna -- my heart hurts for all in this situation

November I lost my beautiful daughter to blood cancer.  Like you I watched her slipped away down to her last breath.  Even though some part of me told me that she was dying, I still thought up to the last moment that she was not going to die.  I must say that she struggled for one year and it was only in the last two weeks that she really deterioated, I was thankful for that.  I know just how you feel and I know that when she finally takes her last breath it will be devastating.  Please know that God is not responsible for our illnesses and our suffering.  There is a scripture in the Bible that gives us comfort Revelation 21:3,4  tells us that God will bring an end to all this suffering " There will be no more tears no more death or suffering the former things will pass".  I am so sorry that someone else has to experience this enemy called death, it truly is a horror story.  I remember telling a friend whose daughter was sick and she asked me if I did not know that your heart does break.  I know how horrible you and your family are feeling and I pray that our Great God gives you the strength to endure this enemy illness and death) of ours.  I never thought that I could sit at the computer after my daughter passed, but in reality life goes on even though I feel to curl up and vegetate.  It is just like a dream, I still feel sometimes that she is still in the hospital.  Please take care of yourselves and remember when she passes she will be in a deep peaceful sleep.  I want you to know that there are many more families out there that are going through this same situation, we are not alone and it is nothing that we have done that caused our children to get sick.  Please let us know how you are doing.  

 

 

 

alutiiqmom

nempark said:

Sara and Edna -- my heart hurts for all in this situation

November I lost my beautiful daughter to blood cancer.  Like you I watched her slipped away down to her last breath.  Even though some part of me told me that she was dying, I still thought up to the last moment that she was not going to die.  I must say that she struggled for one year and it was only in the last two weeks that she really deterioated, I was thankful for that.  I know just how you feel and I know that when she finally takes her last breath it will be devastating.  Please know that God is not responsible for our illnesses and our suffering.  There is a scripture in the Bible that gives us comfort Revelation 21:3,4  tells us that God will bring an end to all this suffering " There will be no more tears no more death or suffering the former things will pass".  I am so sorry that someone else has to experience this enemy called death, it truly is a horror story.  I remember telling a friend whose daughter was sick and she asked me if I did not know that your heart does break.  I know how horrible you and your family are feeling and I pray that our Great God gives you the strength to endure this enemy illness and death) of ours.  I never thought that I could sit at the computer after my daughter passed, but in reality life goes on even though I feel to curl up and vegetate.  It is just like a dream, I still feel sometimes that she is still in the hospital.  Please take care of yourselves and remember when she passes she will be in a deep peaceful sleep.  I want you to know that there are many more families out there that are going through this same situation, we are not alone and it is nothing that we have done that caused our children to get sick.  Please let us know how you are doing.  

 

 

 

Thank you for the comments

Hi

Your words really touched me.  Sometimes, I feel like I am in total denial.  I keep thinking she is going to be ok, but then I think, "What am I thinking we have hospice?"

Thank you for sharing. God Bless you.

Edna and Sarah