Kids with tumors and caregivers at Conf

[otjenn]

Hi all. I'm Jennifer Wolff, survivor and occupational therapist and I'll be speaking at the conf. I know time is short but as I'm putting the power point together - there is such a wide spectrum....Do you all have any questions I can attempt to answer? Just let me know and I'll be checking. Thanks for any input! jenn

[kimsmom]

Jennifer,
My daughter is 4 and was diagnosed about a year and a half ago. She most likely spent at least a year (if not more) in pain from this tumor prior to the diagnosis. She's developed a fear of other children hurting her or touching her back. It's still very sensitive since the surgery. She's also been going through chemotherapy treatments which has limited her time around many children. We are hoping that she will be able to attend preschool through our local school district in the fall. It will be no more than 15 children and at least 3 adults along with a speech path, OT, and PT working in the classroom at different times. I think she will love getting to know other children as her personality has been changing since she's been on treatment. She really wants to make friends and play with children but she is very worried at the same time that if they are doing something active she'll get hurt. She's been getting a lot of OT and PT and through all of it she's gotten stronger and her balance and gross motor abilities have improved as well. I guess I'd like to know a couple of things regarding this:
*How long should we expect her to be extra sensitive on her back or is that a lifelong thing?
*Is there something I can do to "desensitize" this for her? Her scare takes up literally her entire back as her tumor was very large. She now lets me rub and touch her back but that has taken a lot of trust and time to get to that point.
*Any advise for me as a caregiver to keep my sanity when the fear and anxiety feel overwhelming might help.
Thanks for listening.
Denise Thul
(Kim's mom)

[phylscircus2]

Kimsmom,

My son was 7 1/2 months old when his tumor was operated on. The scar is still sensitive....it still itches once in awhile and ticklish...(his words) he is now 9 years old.
I went to label free shirts or completely cutting anything out that rubs on his neck. SOme t-shirts, the thread in the collar has plastic in it, it irritates it and took quite ahile before I noticed removing the tags was not enough. Watch out for the plastic....almost like a piece from a price tag. It pokes.
Balance is sometimes a factor in what your daughter is feeling. The leggs are from what I have learned a big factor and in different areas effected. Her weakness on her limbs and the fact she might have to concentrate to balance.....could be the reason of fear of being hurt by a child. Even a poke for getting her attention....(Zach says the same thing if he is tired-good to have around and ask these question- he says some days he doesn't play with the other kids because he is tired and weaker...he knows what could happen being fused and not alot of protection on his spinal cord) Some playground equipment is an absolute no no....monkey bars...hate to say it, alone, it is fine but myself and the school chose to use it only during physical therapy, he knows not on lunch recess. Sports, he knows the yes and no's.
As far as her scar, water temp in the bath or running water can bother her also.....its the skin surrounding and the scar itself that bothers Zach, He tests the water on his foot, the thin parts between the heel and toes, he says its the best way to tell if it will bother his back. Hope this helps you somewhat......Zach is 9 and maybe he can answer something else for you. From what I have read from the adults after surgery, it isn't much different then what they write, but it is hard to understand them when they are that young.

[kimsmom]

phylscircus2,
Thanks for all of the advice. I appreciate it. I had to read it a couple of times because Kim's brother's name is also Zach! Kim will be going to preschool this year. Is there anything specific you did when Zach was entering school to make it as successful as possible?
Thanks.
Denise