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Tami
March 9th, 2004, 02:24 PM
I remember thinking how hard weekly treatments were going to be on the kids!!! For Jacob and Sami it's not too bad. Jacob sleeps and Sami naps. Since they feel so much better on the treatment they are happy to go. For us the drive is a killer (4-5 hours round trip before home health)! How are your kids dealing with the weekly treatments? How do you deal with entertaining them?

Hugs,
Tami

Sharon Cochenour
March 9th, 2004, 02:53 PM
Tami
My son Andrew does not get ERT but he gets IVIG treatments it is 3 hrs. round trip, sometimes more. It depends on where we go for treatments. The infusion is 6 hrs. and he also gets pre-meds. of tylenol, and steroids. We no longer get the benadryl, he would sleep the whole time after that. Now I have to entertain him the whole time. My advice is we never go anywhere without the DVD player or portable tv with VCR. Andrew usually takes 3 movies and that will get us through the treatment. I also pack a little lunch and snacks so we can have a picnic.
We use to get home infusions, but my insurance will not allow for that anymore. We have to go to the hospital or clinic now.
Sharon

Tami
March 9th, 2004, 04:33 PM
Oh Sharon!!

When ERT for Hunters (notice I said when:) are you going to do both treatments? Holly Buckets that would be alot!!! The DVD player is a great idea. I got one in my car when we started treatment for the long drive but never used one at the hospital... Now that we are at home we call treatment day "Movie Day". :lol:

I'm so sorry your insurance company stopped letting you have treatment at home. They are so unfair!!!!!! *%$#&*&** insurance companies!! :cry:

Hugs,
Tami

Sharon Cochenour
March 11th, 2004, 12:46 AM
Tami
Hopefully when ERT is available for Hunters we won't have to get IVIG treatments anymore. Dr. Munzer doesn't really know. He has another child that had low platlet that got IVIG treatments, but doesn't take them anymore since starting ERT clinical trial. Unfortunately Andrew is the only Hunter child he knows of that also has immunosupression, that has not had a BMT.
By then we will be use to 6 hr. infusions. We already have got them for 2 years, and Andrew already has a port in place.

WOW one thing that Andrew is ahead in, he is usually behind in very thing. :lol:
Sharon

MelI
March 11th, 2004, 02:32 AM
I just have to say I agree with Sharon so much on the portable DVD player for the car and Clinic. That was literally the best purchase we have ever made! Jacob gets his infusions (not ERT --- IVIG, Pentamadine, & Synagis) every 4 weeks now (started at 3 times per week after transplant and has gradually gone down from there!!!) at the hospital and truly the only thing that keeps my VERY ACTIVE :bounce: 3 1/2 year old from yanking his IV out of his port is his beloved Dora the Explorer! :D Also, I always remember to keep stocked up on his favorite snacks and I find a sitter (aka Grandma :lol: ) for his brother (Matt-man :Party: , 2 1/2) so that I can focus all of my attention on Jake.

Take care, Melanie
http://www.caringbridge.org/wa/jacobirish

Steve Holland
March 14th, 2004, 01:41 AM
Our kids are treated in a hematology/oncology infusion clinic at the hospital. As a result, they are in a main room and teenage room with video games, tvs, vcrs, computer, internet access, board games and a child life specialist that generally has an arts and crafts project for the day and lots of snacks. While they sometimes say that they are bored, there really is quite a lot to do.

Many of the kids with cancer also have to go every week for infusions. We have found that some of the kids' clinic friends get together an plan their infusion day for the same day each week to ensure they can play with each other.

Steve