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View Full Version : Advice for a young girl with cancer..... - UPDATE post 28


DizBelle
09-18-2007, 03:14 PM
My niece (3.5 years old) was recently diagnosed with a rare form of cancer. She is in he hospital and has recently finished her first round of chemotherapy. This has resulted in the side effect of sores in her mouth and her esophagus and this is making her resistant to eating. They had a feeding tube in for a while but she couldn't tolerate it and took it out herself. They are leaving it out for now.

She eats a bite of this and that every now and then but she needs more nutrition to help her heal. Does anyone have any suggestions on how to entice this little girl to eat more? Does anyone have any suggestions on what we should try to get her to eat?

ETA- Please feel free to offer any an all suggestions. We won't hold you responsible for your suggestion. We want to be able to consider anything and everything.

Jennifer S
09-18-2007, 03:19 PM
I have no advise. Just wanted to say I'm sorry and will keep her in my prayers. No child should ever have to deal with that.:hug:

mommasita
09-18-2007, 03:23 PM
Gosh. I don't know..God bless her and make her well :grouphug:

Had a thought, what about Carnation Instant Breakfast? I take that often, as it has great chocolate flavors :)

m&m's mom
09-18-2007, 03:24 PM
I am by no means an expert on this but I do get mouth sores sometimes too. I would think they could coat her mouth in something neutral (Milk of Magnesia for example), before a meal.
Poor girl. That is nice you are a concerned Aunt.

emily1982
09-18-2007, 03:25 PM
How about milkshakes or fruit shakes??Soups so she could take a sip here and there and maybe dip bread in to soften it up.

tiggger1
09-18-2007, 03:30 PM
tell them to try a mixture of benedryl and Mylanta. equal parts of each. Have her swish them in her mouth and then spit. Itll help with the sores in her mouth. ( CHECK WITH HER DR FIRST THOUGH)


My aunt volunteers in the cancer wing. She recommends fresh lemon-ade so help with nausea. Another thing to try is plain old baby food. As much as you want to try healthy foods, at this point I would try to get her to eat ANYTHING. What about a milkshake with Pediasure? What are her favorite foods?

Disney_Dreaming
09-18-2007, 03:47 PM
Had a thought, what about Carnation Instant Breakfast? I take that often, as it has great chocolate flavors :)

Poor baby! Bless her heart!

I was going to suggest that too. I give that to my son when he's not eating well. The chocolate flavor is smooth, creamy and delicious.

EthansMom
09-18-2007, 03:58 PM
Have they tried Ensure? My brother drank quite a bit of it when he was going through chemo and the flavors are nice.

I agree with trying baby food. Soft mushy foods would probably be more palatable with sores.

My thoughts and prayers are with your family.

lyzziesmom
09-18-2007, 04:32 PM
When my brother was going through chemo, the hospital gave him something similar to Ensure to drink. It was chocolate and he liked to freeze them, then eat them with a spoon. Because of the rich, creamy texture, it doesn't freeze all the way and is soft like a sorbet. I bet the cold would help numb her mouth sores as well, and it tastes like ice cream.

kathie859
09-18-2007, 04:45 PM
Dad was always big on milkshakes when we wouldn't/couldn't eat. He'd lace it with an egg and we never knew. I hope your DN has a successful battle with this unfair disease.:hug:

Desnik
09-18-2007, 04:51 PM
I am so sorry to hear this poor baby is going through this! My prayers are with your family.

I am no expert either but when DS had his adnoids and tonsils removed at 3 years old he was so sore and didn't want to eat for about a week. What helped him was frozen fruit bars, jello and ice chips just to sooth him. I would think something like Ensure or the Pediolyte version of it for children would be great, if you can get her to drink it. I really wish you a lot of luck.:hug:

imabrat
09-18-2007, 04:55 PM
DO NOT FORCE HER TO EAT!

I am 14,also a cancer patient,and get HORRID mouth sores.
I recently went through a bad bout of them,to the point where the Lidocaine was my best friend.
I would have my mom make milkshakes with Ensure in them.
That helped me get some of my nutrients and weight back.

Just in case,the one solid but mushy food I was able to eat was stuffing.
Turey,chicken,it didn't matter.
That was the only food I could manage.
Try it with her,you never know!

Hope I helped!
Sonya.

KimAshton
09-18-2007, 04:57 PM
I am so sorry to hear this.

I would definitely try milkshakes.

MareQ
09-18-2007, 05:07 PM
Oh my. That poor little girl :( We battled this with my mom when she was having chemo- this plus cachexia(sp?) - terrible to get her to eat anything.

Can they give her meds that will help with the pain so she can eat? How about cool things like pudding, ice cream, jello, shakes, scrambled eggs etc?(My mom would only ever eat McDonalds vanilla shakes)

You can also try pastina - those little star shaped pasta. Boil in some chicken broth till it's done, then mix in some butter, parm cheese and stir in a beaten egg(make sure it's HOT or on the burner when you do this so the egg cooks) It's very tasty and doesn't require any chewing.

Best of luck

NotUrsula
09-18-2007, 05:25 PM
What everyone else said. I would imagine that salt (in soups and sport drinks) is something you would want to be careful of, it probably makes the sores sting pretty badly.

I also second the advice not to force her. My DS' best friend is a childhood cancer survivor, and though he has been in full remission for 6 years, he's still very gun-shy about food because of all the nausea he went through. He still only eats about 6 really favorite foods. One of the things he will eat is plain Wonder bread, with the crusts off. I guess it is bland enough and soft enough.

barkley
09-18-2007, 05:51 PM
i would hesitate on milkshakes or anything that has to be taken with a straw.
reson being is i had jaw surgery years ago and found that any area in the mouth where there are sores or stitches are made more painful by use of a straw. the sucking action tugs at the sores and makes it more painfull.
honestly, the most soothing and somewhat nutritious food i could get down was warmed (not hot) broth with soft noodles or SMALL soft veggies/meat. if i had been aware of it at the time i probably would have lived on miso or wor won-ton soup. it seemed that slightly warm liquids were very soothing. anything acidic made my mouth feel on fire-so not orange or lemon based juices (i did a lot of room temp cranberry). another thought-sounds wierd but it worked for me-if she likes pasta sauce, make up a batch and puree some veggies, melt cheese into it. then she can eat it like a soup, perhaps even dip soft french bread into it. i found that allot of soft foods are terribly bland, so by makeing up a batch of this it might entice her to consume more.

Magix
09-18-2007, 05:57 PM
I have a friend going through chemo and radiation for lung cancer currently and the treatments give her esophagitis, which makes it extremely painful for her to eat or drink anything. Sounds like this may be what's happening to this poor child. Honestly, the feeding tube may be the only way to effectively get her the nutrients she needs. That's the point that my friend has now come to, although as an adult she actually WANTS the tube. Medication has not been enough to cut the pain.

How terrible that a 3 1/2 year old should have to suffer through something like this...

disney1990
09-18-2007, 06:21 PM
My 9 year old granddaughter has been undergoing chemo for cancer. She experienced the same kind of sores in her mouth and throat. Thankfully, after the first round of chemo, she didn't get them anymore. However, she was so sick from the chemo, she still wasn't eating. She had a tube put down her nose that went into her stomach. Every night she was hooked to a pump that pumped nutrition into her. She went all the way to a size 5T when her weight was at the lowest.

Thankfully, she has just finished her LAST chemo and is eating again. She even has hair about 1/2 inch long. :woohoo:

CEDmom
09-18-2007, 06:50 PM
The poor little thing:sad1: . My heart goes out to your whole family:grouphug: .

My only suggestion would be to get her favorites. This isn't in the same league at all but when my DD was younger than your niece she had cronic ear infections and didn't want to eat. We basically let her have anything she wanted just to get calories in her. She went for cold stuff like ice cream, juice pops and yogurt pops (made in an ice pop mold). She still wasn't getting all the calories she needed but it was enough for her to get better.

hydster
09-18-2007, 07:07 PM
Our nephew was diagnosed with ALL when he was 2 1/2 and has had the mouth sore issues on and off depending on the round of chemo and other issues. For him I know my sil said she fed him
Pudding
Mac n Cheese
Cottage Cheese
Bananas
Applesauce
Jello
Mashed Potatoes
Ice Cream
Baby food
Ensure
Eggs
Yogurt
Warm bullion

Her pediatric oncologist told her to avoid at all cost

Chocolate
Chips or Pretzels
Raw fruits and veggies *except bananas and applesauce*
Vinegar based anything
Pickles
Anything with any spice in it
Anything salty
Toast
Popsicles
Fudgesicles
Fruit juices like orange or tomato

The ped oncologist also suggested using a straw whenever possible, using a smaller than normal spoon *like a baby spoon*, have him suck on ice chips, to try foods at room temp or a little cooler as hot foods had a tendency to irritate the sores, and to cut the food into the smallest pieces possible.

Best of luck for all of you involved with this horrible disease! My nephew has been to hell and back quite a few times and he still has another 2 years of treatment ahead of him.

MELSMICE
09-18-2007, 07:28 PM
I don't have any advice, just offering my prayers for your niece. :grouphug:

mommasita
09-18-2007, 09:17 PM
Sonya :grouphug:

I wrote on Coping and Compassion to you and your mother..
You are in my prayers..

TinkerbellRN
09-19-2007, 07:00 PM
i've worked with children with cancer for about 5 years not. often times we will use a mixture of benedryl, mylanta and xylocaine as a mouthwash, sometimes that helps. (we call it BMX, i'm sure her doctors/nurses have something similar on board!)
lots of milkshakes, pediasure, ensure, etc. pasta is another one. just make sure she's getting some medicine for her mouth, because it is PAINFUL even when not eating!
good luck to you all!

boomhauer
09-19-2007, 07:06 PM
I have no advice to offer, but I just wanted to chime in to offer support. Every time I read something like this it makes me realize how silly some of the things we concern ourselves with and fight about really are.

You're a great Aunt. Please wish your niece all the best.

DizBelle
09-20-2007, 11:41 AM
For those that are interested, she was really struggling for a bit but after a while with the IV nutrients, she perked up a bit. Her mouth sores are starting to heal some. So, she's doing a bit better now but she's got a long road ahead. She's supposed to start her next round of chemo tomorrow and I'm concerned that the cycle will just start again. We're just going to have to take it a day at a time.

DizBelle
09-21-2007, 11:39 PM
She's showing a real interest in eating now and the mouth sores are still there but healing so it still hurts. But I think she's on an upswing for now.

Nancyg56
09-22-2007, 06:11 AM
I wish I had advice for the poor little Princess. I will keep her in my prayers. :hug:

DizBelle
09-05-2008, 09:12 AM
In case anybody was interested....

It was a pretty long and very tough road and after months of chemotherapy and surgery to remove the tumor, my niece is now CANCER FREE!!!!

She's 4 now and is getting back into life. She's no longer on tube feeding and is eating more and more. She is just about at her pre-cancer weight and is gaining bit by bit. Her hair is growing back. Some semblance of normalcy is returning to her life.

She has started pre-school and has gotten back to the dance lessons she had to be pulled out of last year for treatment.

Her life was on hold for a year but IT'S BACK NOW!!!!

We can't be more happy for her.

Now, we have her wish trip to WDW to look forward to in just a couple of months.

DisneyKT
09-05-2008, 09:35 AM
:goodvibes I am so happy for your family. I hope she has a long and happy life. Best Wishes. Enjoy Disney.

imabrat
09-05-2008, 09:44 AM
I'm so happy to hear this great news! Congrats to your family, and especially your niece, she is one brave little lady!
I hope she has a long, healthy, as normal as possible life. Have a great time at WDW, Make a Wish does some really special things for you!

Did her hair grow in any differently? My hair is the same exact color as before, but now it's curly. I'm in school now, but I missed my first week due to a sinus infection. : (

DizBelle
09-05-2008, 09:49 AM
I'm so happy to hear this great news! Congrats to your family, and especially your niece, she is one brave little lady!
I hope she has a long, healthy, as normal as possible life. Have a great time at WDW, Make a Wish does some really special things for you!

Did her hair grow in any differently? My hair is the same exact color as before, but now it's curly. I'm in school now, but I missed my first week due to a sinus infection. : (

It's still too early to tell. It's only about 3/4 inch long at this point.

Robinrs
09-05-2008, 09:58 AM
I just found this thread and was in TEARS until I read your update!! What a blessing!!!

Hugs to you and your family!!!!! :grouphug:

DisMN
09-05-2008, 12:30 PM
What a wonderful update! And what a fun trip you'll all have with her!!
:cool1: