The boys pushing their little sister in the stroller when the weather was warmer.

Taken just before Sally’s diagnosis.

Hi all – For the last week, our friends over at The Truth 365 have been highlighting siblings of children with cancer, as they sacrifice so much. Not only do they have to deal with less attention from their Mommy and Daddy, but they’re exposed to scary things that come with pediatric cancer. Today, our other friends at Frankie’s Mission held a basketball event for survivors and their siblings to “get away from it all for a couple hours.” It wasn’t a fundraiser, just a bunch of kids getting to play basketball and other games with athletes from two local college basketball teams. Since a follow up question to “How’s Sally doing?” is almost always “How are Thomas and William handling it?”, we thought this was a good time to dedicate a post to them, and that answer.

When Sally was first diagnosed, we were at a loss for how to tell the boys. We were at the hospital so much that they were shuttled back and forth between friends and family. For awhile, they loved it, all the attention and adventure. However after a few days they really missed us, including their little sister. The Child Life team at Sloan-Kettering guided us through how we should tell them, and even provided some books to use. We decided that Nicole would talk to them about it one night while I stayed at the hospital.

Thomas had a grasp of it quickly, for the next few days he spent a lot of time reading about childhood cancer to the point where he knew more than we did. The hospital gave him a stuffed animal, Ducky, that “has cancer” complete with central line and missing hair. He brought the doll with him everywhere those first few days, even explaining it to kids at summer camp. Since then, he’s always had a good understanding of Sally’s cancer, and is pretty aware of what’s going on with her treatment. Today after seeing Cami at the event, he asked what the difference was between AML and ALL Leukemia. Nicole and I just discussed it and will have to sit him down and explain the difference, and how Cami got through it. These are the kind of strategies we have to develop when talking to the boys.

Taking Ducky and a cancer book to summer camp.

William on the other hand is more of an introvert (like me), so you don’t always know what’s going on in that mind. He doesn’t fully comprehend what was wrong with Sally, he just understands that she is sick and in the hospital a lot. We weren’t sure how it was affecting him until he started waking up with nightmares, so had to make an effort to calm him and give him a sense of security, and we still do. He often makes comments such as “if I’m sick, do I need a feeding tube?” or “I don’t want to be sick, I don’t want to go to the hospital.” Just tonight he asked Nicole how long it would take for Sally to get better, and didn’t understand why it would take years and not days. We have to be very careful how we phrase things with him and make sure we make him feel secure.

They both have their own unique relationship with Sally. While Thomas and William have the typical love/hate relationship found in young siblings, they both absolutely adore their kid sister. Sally and William have always had a quiet bond. When she was younger you would come out and find William laying right next to her sucking his thumb while she played on the floor. Even now, he asks to sit next to her at the kitchen table while we’re eating, or when we’re sitting on the couch together. They enjoy being around each other, even if they aren’t interacting. She is his buddy.

Goofing around with a stool.

William often remarks “I love my little sister.”

Thomas on the other hand has recently begun to form a tighter bond. He always adored her, but rarely made effort to interact with her. Nicole has noticed that Sally now perks up when he’s around, as anybody that knows him is aware of his huge (and loud) personality. Thomas has realized that his sister loves his attention, and smiles when he talks, so now makes more of an effort to entertain her.

When Thomas met Sally, he broke into peek-a-boo on his own.

They’ve both been exposed to the things that come with Sally’s cancer. They’ve seen her in a lot of pain both home and in the hospital, watched us feed her through her feeding tube, nervously observe Nicole give Sally a shot, seen her throw up several times, watch us change the dressing on Sally’s central line. These aren’t things that kids their age should have to see, and we can’t always (nor want to) hide it from them. This is a two year battle and they’re going to be exposed to it one way or the other, it’s best that they learn about it in our controlled way. Nicole and I make an effort to be positive and upbeat about Sally’s treatment around the boys and make clear everything we do is to help her.

The boys visiting Sally on her birthday. She was in a lot of pain from having her feeding tube installed that morning.

One of the most challenging jobs for Nicole and I is to give all three kids the attention they need. Obviously Sally demands more than both boys, her situation is life threatening. However, both boys have special needs that if not for Sally’s cancer, would consume us on their own.

Thomas has sensory processing disorder and a non-verbal learning disability. As mentioned above, he’s a large personality and can have behavioral issues when overstimulated. Even with three “normal” kids, it would be hard to give him the attention he needs or demands. It’s also a big reason there’s only a select few we can leave him with, as he can be very challenging to manage if you don’t understand him.

William…well…we’re still trying to get a handle on. He has clear anxiety issues and is at a school that can give him OT, PT and Speech Therapy. Unlike Thomas, he doesn’t demand much attention, he loves going off on his own to quietly play, and has a goofy, quiet and amazingly sweet personality.

There is definitely a guilt we have that we can’t dedicate more time to them when we know they need it. We’re doing the best we can to get them the help they need.

Most of all, they miss out on doing regular family things. Before Sally’s diagnosis, we got to the point where we could go out to dinner every 2-3 weeks. Now, we aren’t able to bring Sally to restaurants, so have not been out to eat together in over six months, and probably won’t until we get through this. We don’t go to parties, or museums, or anything as a family anymore. When its warmer out we can at least be outside together, but in the winter our ability to get out as a family is limited, especially with it being cold and flu season. Luckily friends and family get them out to do things from time to time, or Nicole and I take turns doing fun things with them. Back when we were offered tickets to Disney World while Sally was in the hospital, we took the offer as we agreed they shouldn’t have to miss out on life.

Overall, the boys are handling it as well as we could hope, and hopefully will continue to do so. Nicole and I are the ones that have to keep healthy minds in order to keep their spirits high despite everything we’re dealing with. We need to be the rocks. This often means holding back tears or taking a deep breath when our patience is already thin due to stress or lack of sleep. This is much harder said than done. Sometimes we go against our rules and say “screw it”, and let them break them if it allows them a fun distraction.  Life needs to keep moving forward, we need to be able find things to smile about to get us through this. We’re very proud of the way the boys have handled this, and will continue to work to keep their spirits high.

Please keep Thomas, William and Sally in your thoughts and prayers.

Matt