Sarah's MRI

BenLenBo

alutiiqmom said:

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

Edna and Sarah,
Benjamin
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

BenLenBo said:

Edna and Sarah,
Benjamin
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

Thank you Carol
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

alutiiqmom said:

Thank you Carol
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

Hi
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

BenLenBo

alutiiqmom said:

Thank you Carol
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

Edna, My Benjamin is
Edna,

My Benjamin is wonderful, cancer free survivor, his doctor's called him boring after his
last MRI. He has the deletions, and had aggressive treatment. His doctor's expect him to live a full life. We have been blessed.
Benjamin had swallow problems from the tube down his troat during surgery, and the few
days after. He was back to normal in about a week, but had several swallow test, and had to eat a special diet. This scared him more than the surgery to remove the tumor. I held his hand and told him I would be there every step of the way, and he is holding me to it. Gotta love that kid.
Swallow test is basically having Sarah eat certain foods, as they watch on a flora scope the food being swallowed. First they, drink this white chaulky substance, which shows up on the x-rays. Wishing her the best.
Roger Maris Handbook is a book covering every stage a person faces during cancer
treatments, diet, exercise, feelings, questions, decribes all testing and what they are
for, everything you can think of is in this handbook and a few you don't think of, prepared by Roger Maris Cancer Center, and given to every patient on their first visit. I am surprised more facilities don't hand out something like this. Designed to relieve the stresses of having to deal with cancer and to keep one focused on healing.
Wishing you a Happy Thanksgiving and Blessing for Health.

(((Hugs)))

Carol

alutiiqmom

cindysuetoyou said:

Hi
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

thank you Cindy Sue
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

alutiiqmom

BenLenBo said:

Edna, My Benjamin is
Edna,

My Benjamin is wonderful, cancer free survivor, his doctor's called him boring after his
last MRI. He has the deletions, and had aggressive treatment. His doctor's expect him to live a full life. We have been blessed.
Benjamin had swallow problems from the tube down his troat during surgery, and the few
days after. He was back to normal in about a week, but had several swallow test, and had to eat a special diet. This scared him more than the surgery to remove the tumor. I held his hand and told him I would be there every step of the way, and he is holding me to it. Gotta love that kid.
Swallow test is basically having Sarah eat certain foods, as they watch on a flora scope the food being swallowed. First they, drink this white chaulky substance, which shows up on the x-rays. Wishing her the best.
Roger Maris Handbook is a book covering every stage a person faces during cancer
treatments, diet, exercise, feelings, questions, decribes all testing and what they are
for, everything you can think of is in this handbook and a few you don't think of, prepared by Roger Maris Cancer Center, and given to every patient on their first visit. I am surprised more facilities don't hand out something like this. Designed to relieve the stresses of having to deal with cancer and to keep one focused on healing.
Wishing you a Happy Thanksgiving and Blessing for Health.

(((Hugs)))

Carol

Thank you Carol
Hi Carol:

What a blessing for Ben and your family! I am very happy for you. I hope you enjoy your Thanksgiving.

God Bless you.

Edna and Sarah.

cindysuetoyou

alutiiqmom said:

thank you Cindy Sue
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

swallow test
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

cindysuetoyou said:

swallow test
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

Thank you Cindy
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

wanye

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

Hi
Hey Sarah

Still praying for you both. May God be merciful and kind to you and to Sarah. May his hand be upon her and may his peace flood her heart and yours as you face each day.Keep going keep fighting. We're doing the same on our end fighting fighting fighting and believing:-)

Wanye

Davisparrish

cindysuetoyou said:

standing in prayer with you
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

Dear Cindy,
I as a mother am

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

Davisparrish said:

Dear Cindy,
I as a mother am

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

 

Thank you

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

cindysuetoyou

Davisparrish said:

Dear Cindy,
I as a mother am

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

 

Thank you

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

cindysuetoyou said:

Thank you

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

Thank you

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