I remember begging for a social worker when my daughter (then 2) was diagnosed. My son was 4 at the time. I know things were very rough on him, we moved, changed schools, lived in a hospital for 2 months. Everything that he knew got turned upside down. We always made sure he was involved in the beginning. He came up to the hospital every day just to snuggle with his sister. Ally was diagnosed over the summer, so it was convienient for us to bring him along, and Ally enjoyed having her brother there while she was getting chemo. He came a few times to pre-op with us before a bone-marrow biopsy but he was worried about her and needed to be with her as well. When he started kindergarten he had a hard time with behavior issuses, but we had a fabulous older teacher that was able to set boundries & give him a little extra depending on where his sister was. The hardest days for him were having to go to school when she had been staying in the hospital.
We signed him up for super sibs - but the only thing he was ever excited about there was the trophy they sent...
We also let him pick something that would just be about him. And so signed him up for karate lessons, b/c at the time he thought he could grow up to be a ninja turtle. I think it helped having something that he could use to get out some frustration, and keep his mind off of the other things.
He has always been really good about making sure he was careful around his sister. Watching for bruises, keeping the germs away, etc. My two have always been close, but since Eric was 4 at dx, he knew we were worried, but I don't think it ever hit him harder than her being really sick. He was never afraid of losing her. He even shaved his head when Ally's hair started to fall out so that she wouldn't be scared. Some kids like to feel like they are taking care of the sick sibling, and we let him participate as much as he wanted. Our nurses even included him when accessing her port, by letting him assist in the flush at the end.
I think it bothers him now, b/c Ally attends the same (small) school. And whenever she isn't there the entire school knows about it & asks me how she's doing. No one really asks him how he's doing. I think the jealousy monster has started to kick in. It is very difficult to make sure both children feel like they are equal. And I think its pretty much inevitable that the non-cancer child will feel left out or not as important as the other kid at some point. I think with us, we may expect more from a 6 year old than we should, simply b/c we are usually exhausted from the constant every day issues & appts that we have to keep up with.
I remember posting a similar question at Ally's dx. Right now our biggest challenge is time. I don't know how to make him feel better about Ally "getting all our time". He is in school most of the day, & Ally hasn't been to school except 5 days in the last 6 weeks. (Every time we send her she's been getting sick). So she has to be with me all day. The hospital also has a father-daughter ball. We are having our own Mommy-Eric date night that night, but he definitely doesn't get the Daddy-time that Ally gets.
I guess it will just be a constant struggle for all of us to maintain equality and keeping the siblings in the loop, and letting them feel like they are helping to care for their brother/sister. One thing we did do was let him eat dinner out & let him pick. We ate alot of CiCi's pizza for awhile. And sometimes the whole family couldn't go b/c Ally was neutropenic & then Daddy took him to Chuckie Cheeze. I think this was a fairly common occurance for us the first few months. We also had to keep a stash of books & toys on hand for him whenever someone sent something for Ally. My mom did a good job keeping us stocked up though. We also hired a housekeeper so that our home time was not spent cleaning all the time.
I wish you luck figuring out what will work for your family & with your little one's therapy.
Katie
