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Sarah's MRI

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hello friends:
It is with a broken heart that I let you all know that the cancer has come back. First, her speech was slurred, then early this morning, I observed her face drooping. I knew we have to go. They did the MRI this morning instead of Tuesday. The scan showed a new tumor on the right side and possibly two smaller ones.
My heart is broken. I actually feel like I am going crazy. I am right on the brink.
We fedexed two MRI discs. One to Seattle and one to UCSF. What to do? I do not know. I must pray and pray for guidance. Please pray with me. I refuse to give up my faith. I know God is with us and he is with Sarah. God made Sarah.
I will let you all know what we do.
God's blessings to each and every one of you.

Edna and Sarah

sadinholland
Posts: 229
Joined: Apr 2011

I am so sorry to hear the news! I will be praying for Sarah and your family. I will pray for guidance and healing. God Bless!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Edna,

I'm so very sorry and sick at heart to hear this about Sarah's MRI. I understand and feel your anguish. It rips my heart for you. Please stay strong....I know what you mean about feeling like you are going crazy. I felt like that several times but I told myself that I couldn't. There was too much at stake for me to give in to my emotions. Sarah needs you and is counting on you to be strong, strong for you and strong for her. Please forgive me if I am putting pressure on you, but thinking like this helped me to keep my sanity.

David and I (and a lot of other family members) all got tattoos that said, "Trusting in God." When we would get bad news (and we got really bad news many times) I would say, "David, now is not the time to stop trusting in God." That became our saying. It strengthened my resolve, like yours, not to give up my faith.

Edna, I am praying very hard for you and for Sarah. I'm praying specifically that UCSF or Seattle will have some good treatment options to suggest to you and Sarah after their tumor board meets. I believe that they will have some viable options--and I pray that you will be able to decide which one to go with and that you will feel a peace from God about the plan you choose.

I'm also praying for strength and peace for you and Sarah and your whole family.

Love and blessings, always,
Cindy

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

It is with a heavy heart that I read your message.

Be as strong as you can in front of your daughter but allow yourself to breakdown when she is not there. I hope that you can surround yourself with people who love you and Sarah.

You choose 2 outstanding facilities to send your MRIs.

Is she on any treatment now? Did her current neuro-oncologist add anything else to regimen? Steroids?
Are all the tumors on the same side of her brain? The reason I ask is that the answer to these questions can influence what kind of new treatment she will be getting or what clinical trial she will be eligible for.

I will be thinking of Sarah. She is bright, young and a fighter. I will hope for an another remission.

with Love

Julia

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia:

thank you for your support. They put Sarah on Decradon, 8mg. 2x a day. We are still waiting to hear what our options are. It sounds like surgically they may be too deep. Our Alaska oncologoist is thinking Gamma Knife, which would involve going outside of Alaska. He is helping us find a facility that will do the Gamma Knife and then start tracking her for a potential trial.

What do you think? We are exhausted from the stess. Sarah is exhauste from the stress and the medicine. She continues to take her 500mg. of Kepra 2x a day. I may call Dr. Liu tomorrow. Today, our Alaska doctor was suppposed to call Dr. Friedman at Duke. Dr. Friedman gave me the name of Dr. Michel Prados, who is at UCSF, he is supposed to be on the same level as Dr. Friedman, but on the West coast.

Thank you for your support. I remain in faith. I am trying to spark that fighting spirit in Sarah. I think she feels like she was punched in the stomach. I feel like we were blind sighted.
I send God's blessings to you and your sister.

Edna and Sarah

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Cindy:
Your words mean so much to me. I do not feel like you are being too tough. Keep praying! I will post when we find out what we are doing. Thank you so much for the support. God Bless you!

Edna and Sarah

Davisparrish's picture
Davisparrish
Posts: 5
Joined: Feb 2012

Dear Cindy,

I as a mother am dealing with the same situation with my daughter Gabby who is 23.  I gain alot of inspiration from your post. Parrish

 

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Parrish. I am glad that I can do something that helps, even if it's only a little bit. 

I can't tell you how sorry I am that your 23 year old daughter is fighting cancer. I don't think there is anything worse than being a mom and seeing our kids in this situation. It's absolutely heartbreaking. But it's amazing how strong we moms can be for our kids. 

I will be praying for you and your daughter. If you can, please post updates. I care about everyone here on csn and i'm always grateful to know how things are going.

Love and blessings and prayers for strength and peace,

Cindy 

In Salem, OR

Davisparrish's picture
Davisparrish
Posts: 5
Joined: Feb 2012

Dear Cindy,

I really appreciate you taking the time to respond to me.  In the last three years I have connected with other in similair situations.  My peace  comes from speaking with others who have been through it.  I posted Gabby's story on my blog feel free to read it. I am hoping we get the chance to talk.  Email Davisparrish@ aol.com  facebook Parrish Diane Swauger-Davis.  Looking forward to hearing from you. Parrish 

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Parrish. I am glad that I can do something that helps, even if it's only a little bit. 

I can't tell you how sorry I am that your 23 year old daughter is fighting cancer. I don't think there is anything worse than being a mom and seeing our kids in this situation. It's absolutely heartbreaking. But it's amazing how strong we moms can be for our kids. 

I will be praying for you and your daughter. If you can, please post updates. I care about everyone here on csn and i'm always grateful to know how things are going.

Love and blessings and prayers for strength and peace,

Cindy 

In Salem, OR

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Prayers for your beautiful daughter to receive the treatment plan needed to end the growth of
tumors. May you find the right medical facility to answer all your questions, so you all can
make the right choices in this battle for life. May the Lord hold you all in the palm of his
hand to offer courage, comfort and the ability to FIGHT, FIGHT, FIGHT.

It is so hard to decide where to go, when every area of the country has various treatment options, for brain tumors. Perfect world would be if everybody was on the same page, but that will not happen as people, tumors and treatments are as different as night and day. I belong to the National Brain Tumor Society, they have articles, advise and hope for all patients, maybe one of these articles would beable to answer your questions.

As a parent, it is so hard to watch our children fight for life, it seems so unfair. When Benjamin was diagnoised, I felt like the bottom fell out of my world. We are now at that point as a family, we are so grateful for the blessings we have been given. Benjamin is free of cancer, considered a
survivor, doctor's have called him boring, and don't expect to see a recurrance ever at this point in his life, Thank God!!!!! May your daughter Sarah, be called boring, so she can celebrate
her life as a survivor!!!!!

Stay strong Edna, it's a tough one!

God Bless and Take Care!

Carol

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi! Carol:

Thank you for your words of encouragement. Fight! Fight! We will. I just love my daughter so much, sometimes, I feel physically ill.
I should check the National Brain Tumor Society - it has been a while. I am not a member, maybe I should join. I am glad to hear that Ben is doing well and has a good prognosis.
What a blessing.

God Bless you and Ben Carol.

Love, Edna and Sarah

PBJ Austin
Posts: 346
Joined: Mar 2009

Dear Edna and Sarah,

When people on this board go into remission I share the joy, but when things go the wrong way I also feel the pain. My kid sister is currently in remission and it is my nightmare that the day will come when her cancer returns. According to the doctors it is only a matter of time but I refuse to believe that. So when I read about your Sarah my heart breaks for you.

I will pray every day for Sarah's healing, as I pray for everyone on this board.

Pam

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Edna,

With the steroids, Sarah should start having some resolution/improvement of her symptoms. When my sister had some swelling causing a facial drop and her left arm weakness within 24 hours it improved with decadron. By 72 hours she was playing the piano again. Steroids buy you time.

These are a few humble ideas: (look on clinicaltrial.gov for more information).

1) If she can have surgery, then she needs to have it at a center that will create a vaccine from the tumor sample. This is one of the biggest regrets that I have regarding my sister. There are several brain tumor centers doing it.

2) If it is inoperable, then yes gamma knife is an option. Also less known is MRI guided laser heat therapy: http://visualaseinc.com/
she might be eligible for either or even both.

Let me know what her neuro-oncologists will suggest. I know that right now you feel overwhelmed and desperate for a magic solution. I think we all have been there. Weight the pro and cons of the options suggested to you by the different neuro-oncologists and neurosurgeons.

Please post about what is going on with Sarah. I want her to beat this monster.

Love

Julia

sadinholland
Posts: 229
Joined: Apr 2011

When the tumor board saw something on my husband's scan at the Cleveland Clinic they said gamma knife would have possibly been the next step, so maybe ask your NO about the Cleveland Clinic for treatment for Sarah. We have been pleased with them and their treatment for my husband. I will be praying!

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I have been thinking about you and Sarah. Any news yet about her treatment plan? Did some of her symptoms diminished with the steroids?

Love Julia

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia

It is very rough. Sarah's reoccurrence does not make her a gamma knife candidate because it is to spread out and there is healthy tissue mixed in with bad. UCSF has not told us if they have a trial for Sarah yet.
We should go to UCLA!
We are in Seattle and today we heard possible 3 weeks of radiation with avastin. Followed by the Novacure device? I do not think Sarah will wear that because she has to cut her hair off. It looks like that anyway. There is another trial at the U of W that involves an old chemo drug primarily used for leukemia but they know it ill make Sarah very sick. She will not do that one. UCSF was talking about Temodar trial and U of W says that will not work for her. So scary and confusing.

Do you know the at T cell trial criteria ?
I am sick with worry. They tell us it is not curable and we are just buying time.
God bless you

Edna

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

mighty6
Posts: 47
Joined: Sep 2011

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

ravirajagopalan
Posts: 7
Joined: Oct 2011

Hi Edna, UCSF is a great facility with excellent surgeons. Hopefully they will be able to help.

Please also consider vaccine trials if the tumor is respectable. Two very good facilities on the West Coast are UCLA (Dr. Linda Liau) and Cedar Sinai (dr. Keith Black or Dr. John Yu). UCLA has an all organic Tcell trial open for recurrent GBMs and Cedar Sinai has a vaccine trial.

Good luck,
Ravi

Tubbs
Posts: 51
Joined: Jul 2009

Not to confuse with too much info, but Dr. Mirhadi and Dr. Yu at Cedars worked on my wife's case. They team up for gamma knife procedures and it felt like we were getting two big-time doctors at the same time, which was a bit of relief, knowing there were two opinions working on my wife's case for one procedure.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Edna,

For the allo Tcell trial, I believe that you need another brain surgery. At least to put a reservoir to deliver the drug directly into the brain.

http://www.clinicaltrial.gov/ct2/show/NCT01144247?term=liau+glioma+t+cells&rank=1

Dr. Liau has also other clinical trials going on.

I cannot imagine what you are going through. Stay as strong as you can for your daughter. I can research more clinical trials but I need information: Is the recurrence in only one spot? Where is is? One side of her brain only or involving both hemisphere?

They said no gamma knife. What about heat laser therapy? The cleveland clinic does it I believe. What about any gene therapy clinical trial, like using a virus... I know there is one at Duke.

I know you must feel overwhelmed and terrified. It rips my heart out that your providers are talking about only buying time. I care very much about your daughter and I still hope she will make through this recurrence.

Julia

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I forgot to ask if Sarah is 18 now because some of the clinical trials will divide adults and children.

The gene therapy trial at Duke uses a polio virus:
http://www.clinicaltrial.gov/ct2/show/NCT01491893?term=virus+duke+glioma&rank=1

love,

Julia

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

wanye
Posts: 11
Joined: Nov 2012

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's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

Edna and Sarah

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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's picture
I_Promise
Posts: 210
Joined: Aug 2011

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's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

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
Posts: 232
Joined: May 2011

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
Posts: 229
Joined: Apr 2011

I will be praying for Sarah and your family.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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's picture
BenLenBo
Posts: 141
Joined: Feb 2012

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
Posts: 68
Joined: Mar 2011

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's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Raani:

Thank you. May God Bless you.

Edna and Sarah

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Carol:

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

Love, Edna and Sarah

wanye
Posts: 11
Joined: Nov 2012

Hi Edna

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

Keep going God bless you both.

Wanye

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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
Posts: 232
Joined: May 2011

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's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Edna and Sarah,
Benjamin developed swallowing issues (dysphagia), from the incubation tube after his surgery. We had to thicken his liquids and it really helped to use a straw- we did this for a few weeks. Straw helps with the swallowing, prevents from drinking liquid to fast. There is a diet specific for swallowing problems. Still kept it from the hospital, here is a
sample: Sarah's doctor or nurse should have something like this also'

Nectar Thick Liquids - purchase thicking agent from drug store, no prescription needed directions on the can. $20.00
Thicken: soups, juices, Benjamin drinks PowerAde, so we thicken that- great for replenishing nutrients, milk, hot chocolate- etc.(Two Tablespoons per cup of liquid)

Avoid: Ice Cream /sherbet, jello,posicles, pudding pops, dry meats, fish, dry bread,
difficult to chew foods - apples, pears, stringy, high pulp foods: pineapple, mango, grapefruit. Any fresh fruit with peels such as grapes. Fruit roll-up and dried fruit.
Tomatoes and cucumbers. Mixed textures.

*PowerAde was even recommended in Cancer Handbook from Roger Maris, keeps them
hydrated, plus has lots of vitamins and minerals. We buy by the case from Sam's Club."

Hope this helps a little, just something we went through with Benjamin. He would choke
drinking from the bottle or glass, but the straw was the trick. Sarah will get through
this, just remain strong.

Prayers for strength, courage and fight, as you conquer this next phase of treatment.

(((HUGS)))

Carol

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Carol,

Thank you for the encouragement and hope. The worst thing about this journey is every symptom seems so horrible and I worry as a Mom, will this symptom always be this way for Sarah?I hate seeing her suffer. I feel like I am being stabbed in the heart.

Tomorrow, we do a swallow test for her. I am going to ask about the diet. I do not know about the cancer handbook by Roger Maris? What is the title?

I hope your Benjamin is doing very well. I pray for all brain cancer patients and their families. God Bless you Carol.

Love, Edna and Sarah

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hello, Edna.

I just wanted to let you know that I'm thinking about you and Sarah all the time and praying for you both. I'm praying specifically for total healing for Sarah and strength, peace, and comfort for both of you.

Where are you and Sarah staying? I don't know if you are still in Seattle while Sarah is being treated, or if you are back in Alaska. It's so hard being away from home during the holidays. I was always so grateful that I was able to stay with David wherever he was. They even let me stay in ICU after his surgeries. I take comfort in knowing that I never had to leave David by himself and that I was his "watchdog," making sure he had the very best care possible. I am so grateful that I didn't have to work and didn't have other obligations that kept me from being with David. I'm so glad that you can be there for Sarah too.

Thank you for keeping us updated. I'm praying that Sarah's swallow test goes well. David had swallow tests and they were able to have therapists who worked with David and helped him to swallow better.

Love and blessings,
Cindy

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

Thank you for the prayers. It is indeed a blessing that I do not have to leave Sarah. My husband's job has been amazing as well and he stays with us most of the way. It does get really hard though because we have also have a 12 and 17 year old. I feel as though they are so neglected at times. They stay in Alaska when we are in Seattle. They will fly to Seattle for Thanksgiving. Doesn't it seem as though we need to be cloned??

We went to the swallowing test appointment. Basically, the therapist watched Sarah eat and drink. I was kind of confused because I thought it was supposed to be a type of xray where they watched the food or fluid go down, but it wasn't. The therapist said they did not want to expose Sarah to more radiation. They already know she is having trouble so they just wanted to work on solutions.

We used a straw for awhile, but that is too hard now. We tried thick-it, but Sarah did not like that. Now, we have a gel to try and Sarah likes that better. We will puree some of her food. This is so scary. Sometimes, I feel like I am not in reality? Does that sound crazy? this is most certainly, crazy making business. How did this happen to my healthy teenager?

Cindy, I hope you enjoy your Thanksgivingn with your family. May God Bless you and yours everyday.

Love, Edna and Sarah

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Edna.

I thought the same thing about the swallow test....I thought they would do the kind of test that Carol was describing that Benjamin had. I expected them to watch David swallow a special drink and use an x-ray. But David had the same type of test as Sarah. I think the difference is that Benjamin's swallowing issue was caused by a trauma of sorts...being intubated. David's cause, and I suspect Sarah's cause for having swallowing issues is different....it's originating in the part of the brain that controls swallowing. It can be from swelling or other things, like the radiation irritating that area of the brain. The swallow therapists told us that swallowing is actually a very complex act, involving a lot of coordination between breathing, tongue movement, throat muscles, etc. They also told us to not use a straw...they said that it allowed too much liquid to go down the throat at one time and actually made aspiration easier. Up to that point, David had been using a straw all the time.

I was really upset at the thought of having to puree' all of David's food. It seemed like it would wreck the taste and the enjoyment of food. We always made mealtimes a big deal. I cooked special tasty things all the time and always made whatever he had a taste for, and all of his favorite foods. But his cousin made him eggplant parmesan and she puree'd it and we all ate it and it was delicious. After that, I puree'd all his food but I was selective with what I made. I didn't try to puree' stuff like steak.

David also really enjoyed those frozen fruit smoothie mixes that you can get in the grocery stores. They are like a yogurt blend and you add fruit juice and your choice of fresh-frozen fruits. I'd go to you-picks and get fresh strawberries and blueberries, and I'd buy bananas and blend them with the smoothie base. They were thick and tasty and David had one almost every day. I loved making them and seeing David drink them.

I'm so glad that your husband can stay with you too, and that your two other kids are flying to join you in Seattle for Thanksgiving. I know that it will mean so much to Sarah to have you all there. I hope your Thanksgiving is really special and filled with good things and lots of blessings.

Love and blessings and peace,
Cindy

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Thank you Cindy for giving me support and advice. I know it must still be hard for you. I feel so fortunate and blessed that you are helping me during this difficult time for Sarah.

They did explain that swallowing is very complex, especially water or a liquid. It seems like Sarah is getting worse, but it has only been a week since we started treating her. I do not know what to expect, but I was really hoping to relieve some of her symptoms.

It was a blessing to have all three of our children her for Thanksgiving. I finally felt like I could relax! I hope that you had a nice dinner with your family. You are such an amazing Mother and woman. Your caring and gracious attitude is always there.

I continue to keep you in prayers Cindy Sue. May God Bless you and yours.

Love, Edna and Sarah

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