raising our granddaughter who has ostresarcoma(NBED HELP ASAP)

KaylaGirl
KaylaGirl Member Posts: 11
edited March 2014 in Caregivers #1
We really need some advise, ASAP
We Picked up our granddaughter Sept 2008 before cps got involved. Kayla was 2 at the time. We had lots of emotional times with our daughter at the time. In April 2009 Kayla was diagnosed with Ostresarcoma in her left leg. She went through 34 weeks of chemo, and lost her left leg above the knee. She did really well with her new prothethes and did almost anything she wanted. Rock climbed, snow skiid, riding a bike. Her mom moved out by us in Dec. 2009 and we have been fighting for kayla ever since. It's been really hard on Kayla. She does not want to move back with her mom. In sept 2010 Kayla was diagnosed with the same cancer in her right leg. She is now doing chemo, and they are discussing what to do with the leg. She is 5 yrs old now. Kayla and her mom do not get along. Her mom is havine lots of frustration with why Kayla doesn't except her. I think Kayla is scared of her mom leaving again. Anyway, Her mom (our daughter) is really causing alot of stress in our lives. We are at the breaking point. she yells at us and swears at us. Caused problems at the hospital. you name it she does it. We almost want to give kayla back to show her mom how hard this is to take care of kayla. Kayla needs 24 hr care 7 days a week. We love our granddaught to pieces and would do anything for her. But what about us!!!! How do we live our lifes without the stress. Do we just put aside our feeling and deal with it??
I really could use some help. We are at our ends.
We are waiting to go back to court to see what the judge would say.
If we give her back, we feel like Kayla wont get the care that she needs and might not survive.
She right now has a 25% survival; the doctors don't expect her to live more than 2 yr.
We are so confused. hurting, mad and scared.

Tim

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    My Heart Breaks For You
    Hello Tim and welcome to you and your wife to the caregivers discussion board. I was a caregiver for my dad. He passed away in March from esophageal cancer with mets to the liver. Wow! you both have your hands full to say the least. I agree, you need to go back to court. From the sounds of it your daughter does not seem fit to care for her daughter. Have you and your wife ever considered getting Kayla a live in nurse, or having a home health nurse come a few times a week. This way you and your wife could get a well deserved break. Your emotions are totally understandable. I am thinking that it would be best for Kayla to stay with you. The length of time the drs. have given her is just a statistic. Kayla is an individual, she just may prove them all wrong! Live for today, because you do not know if tomorrow will ever come! Hope this has helped you. Keep us up to date. Glad you have come to join our family.
    Tina in VA
  • skipper85
    skipper85 Member Posts: 229
    Difficult Situation

    Tim:

    You are in a very difficult situation but I feel you are Kayla's only hope for some normalcy, love and good care for whatever time she has left. Keep fighting for her. I know it's tough on you and your wife but sometimes God works in mysterious ways. There's a reason he put Kayla in your care. I would also suggest you and your wife join a caregivers group in your area. They can be a wonderful resource for you. Kayla is only a little girl. She can't fight for herself. She needs you to be there for her.

    Skipper
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    skipper85 said:

    Difficult Situation

    Tim:

    You are in a very difficult situation but I feel you are Kayla's only hope for some normalcy, love and good care for whatever time she has left. Keep fighting for her. I know it's tough on you and your wife but sometimes God works in mysterious ways. There's a reason he put Kayla in your care. I would also suggest you and your wife join a caregivers group in your area. They can be a wonderful resource for you. Kayla is only a little girl. She can't fight for herself. She needs you to be there for her.

    Skipper

    Yes
    Skipper said everything that I was thinking, especially those last three sentences.

    Maybe if you can find help from support groups or local cancer agencies, you and your wife will not feel so overwhelmed.

    (((Hugs)))
    Penny
  • KaylaGirl
    KaylaGirl Member Posts: 11

    Yes
    Skipper said everything that I was thinking, especially those last three sentences.

    Maybe if you can find help from support groups or local cancer agencies, you and your wife will not feel so overwhelmed.

    (((Hugs)))
    Penny

    thank you everyone
    thank you everyone for your support. I willl keep in touch

    tim