My 14 yr old daughter has been diagnosed with osteosarcoma and I need help

[djblu883]

The diagnosis is final now and it is osteosarcoma , we are starting chemo on monday. The diagnosis came in today after the people at the mayo clinic compared the results with the x-rays and MRI's .
Now it's time to kick the beast out of the body for good.....she is one amazing kid and is giving me the strength.

I'm glad your daughter is able to cope so far...in times to come she may feel a need to talk to others...see is they have a group of kids who are also going through this she can chat with if possible! My prayers are with you! my DGD has a benign brain tumor that they are watching so I certainly feel your pain....even benign its sooooooo scary

 

[Mackey Mouse]

Be tough Kanga.....she will need you to be tough and she will have her inner strength and the strength she will get from you.

Not sure how long her treatments will be, but make sure you are armed with plenty of magazines, maybe crossword puzzles something to entertain if they do not have TV's for you to watch. At Mass General, their chemo area was state of the art, separate TV's for each patient, people coming around with carts offering drink and cookies, they like them to eat as the chemo burns calories. Also, I am not a great knitter, but I would knit while I was there, scarfs, whatever, just to keep my hands busy. Also, I found people are just so kind to each other in these places, the nurses were wonderful.

One the Cape where I live now, and although 5 minutes from the house, the chemo treatment was the same, but not state of the art. People would not look at each other and did not talk, nurses were not that friendly. If Tom has to have more treatment, I have told him it is Boston and if we have to get a room or something to do it, we will.

Take care of each other, and if we can answer any questions, not that all of have had the same kind of cancer in their family, but general questions we are here for you..

Stay strong!!!!!! HUgs to your daughter and to your family and of course prayers being said.

This is a PS.... avail yourself of whatever they offer you.. if they have groups for her to sit in on and discussions with her peers, have her do it, you as well. I agree with the previous poster talking about this is cathartic.....for family and for the patient. Hence this board.. Hugs again!!!!!

 

[Mskanga]

Marsha we went yesterday to see the center where she will receive the treatments and everyone was very nice. They have individual rooms ( I think they have like two chairs per room but they use the second chair for the companion if needed ) , they also have a tv with directtv , vcr , dvd player , the only thing they don't have is internet access. They also have a bookshelf full of books and tons of magazines.
There are a couple cancer centers closer to where we live but I will go to philadelphia just to have the wonderful doctors that we have.

 

[apres]

can i post the links directly to mskanga instead of waiting until i have ten posts to post to the board? my daughter had osteo - i have info for her.

 

[CarolynU]

Simon was shocked when I spoke to him today, and sends his love to you
and DD. Keep strong. We are all there for you.

 

[Mskanga]

Apres , I sent you a PM with my e-mail address so you can send it to me , I truly appreciate it.

Carolyn , you can tell Simon that everytime we go to Epcot I think of him and miss him , we had one of the best times ever the night that he went out with us at Discon , he was a blast , and I have never been in a car with feathers again since ! ROFL.

 

[mommasita]

Prayers for your daughter, and more prayers of strength for your whole family.

 

[Mskanga]

Thank you all , very much appreciated. Now if I could just get to understand insurance companies politics I would be happy......on top of all of this , I need to figure out what and how much they cover things.....as if we didn't have enough !

 

[Mackey Mouse]

Insurance companies should cover most of it.... once you have satisfied your deductible...if you have one. You have to read one of my many rants on insurance companies, but here's the thing, stand up to them, question everything and do not pay anything until all bills are settled....In other words, the hospital bills them, they pay a portion, then the hospital bills you, you call the insurance company, they resubmit it and pay a little more. It is like a game, keep accurate files and stay on top of it because they try to wear you down.....

Hugs Kanga.. I am thinking of you and your daughter and family, this is not easy, but you will do it. You get like this inner strength and you just gear up and do battle....Sometimes when I look back at Tom's surgery and emptying drains and changing bandages and helping him walk, getting him to radiation 5 days a week in the middle of that horrid winter we had in 2004/2005, I wonder how we did it, but we did it as a family.....You will too... HUgs again.

 

[apres]

mskanga,

thanks for the PM. i sent you a couple of links for osteo.
re: insurance. get a book for all the insurance paperwork. with the vast amount of billing you will go thru, there *will* be mistakes. (i had one bill that listed me as the patient) i organized ours by month - seemed to help me find papers when needed. don't be afriad to question everything. if you have anyone in your family who is good at this - enlist their help - it can be a full time job - and you'll need/want to spend time with your girl - not paperwork.

hang in there.

anne

 

[lookingforward]

My thoughts and best wishes are with you and your daughter and family. Keep us up to date on her progress and we will keep you all in our prayers.

 

[CheerExtreme]

I am from the teen board and have been pm your daughter lately. I just want you to know that even those on the teen board are thinking about here and praying for your family. My brother had cancer when he was 5 so I know what you are going through.

 

[Ellasgirls]

My prayers are with you and your family. One of my close friends has a 2 year old that has been battling ALL for a year now and uses Caringbridge to update friends and family as well as an outlet for her fears and praises through this process. Let me know if you want or need more information about it. God bless and protect your little one....

 

[Grandma Bear]

My heart and prayers go out to you. Your daughter is a very brave young lady. Her positive attitude is what will pull her through. I have asked your names be placed on the church prayer list. We have we seen many miracles
come to pass. I teach middle school and many teachers have donated hair to Locks of Love. They are a great group. My team partner had to undergo
Chemo twice for breast cancer. She preferred the scarves or hats to the wigs as she said they were not as hot. Remember you have many people praying for you and that are concerned for you and your family.

 

[CarolynU]

Olga.
Yeah the feathers were ummm different LOL! I searched for your DISCON photos the other day, but couldn't find them. Hiding the evidence eh.
We are all routing for you and your DD. Si's words were " what on earth has a kid done to deserve this. "
Keep strong all of you. We are thinking of you, and still remember all your kindness not only for Si, but also for Bec when you said that you would help her with her visit to NYC if required. You were a great comfort and I hope that I can be the same for you.

 

[Mskanga]

Thank you all very much for the kind words. Yes Sonya is one very brave young lady , she is my hero.
Today she doesn't feel very well , she is tired but the good news is that she has not vomited in the entire treatment , today the 24 hour hydration treatment has stopped and now she only has two more days to be hooked up on the IV for four hours a day.
We are determined to kick this thing , we have a wonderful team of doctors and this was caught very very early , a wonderful group of friends who are supporting us along the way and faith that we are going to be ok , the road may be long and bumpy sometimes but we are going to win.
Thank you all for your support , they mean a lot to us at this time.

 

[JennCa]

Your family sounds fabulous, so loving and strong! Take each day at a time and enjoy each moment. I was thrilled to hear you were going to Philly, I have heard it is the BEST!!!

Jenn

PS Thanks for your email about Steven.

 

[Mskanga]

Jenn that is what I heard too and truthfully I have all faith.

 

[Grandma Bear]

Just checking in to let you know I have not forgotten you!
and Prayers. Your faith will bring you though this
and you will be stronger when it is done.

 

[JunieJay]

My goodness Olga, I am so very sorry to hear this. Saying many prayers for your DD and all the good thoughts I can. Keep us posted.

Judi/Snoopy