How did your hospital meet Abby’s psychological needs, ie explaining procedures so she wasn’t scared, keeping her spirits up, etc. Do they have a person for that? I’m interested in working in Pediatric Oncology from a psychological standpoint, like a support person for parents and children...
As for keeping up her spirits and familiarizing Abby with what was going to happen, our hospital has a wonderful Child Life Specialist, Kristen. Every time Abby had a new procedure she would bring in picture of where it would take place, of the equipment and talk about what would happen (from Abby's perspective). Then when she could she would bring in actual medical supplies, so that Abby and her could pretend to be the doctors and nurses (Sami was usually the "patient"). All disposable equipment would be left with Abby so she could play with it as much as she wanted to. Abby and Sami has logged in hours of play time with the treasures Kristen left them.
Kristen with Abby
When she was first diagnosed, Kristen also brought in tiny pieces of candy, in varying sizes, so Abby could learn to swallow pills in a nonthreatening way. Abby is now great at swallowing pills and the skill has made things much easier for her.
Abby's nurses and doctors also spent time helping Abby feel comfortable and less scared. Abby loves all of her nurses and doctors.
As for her emotional needs, Brent and I knew from the beginning Abby would have many potentially painful and/or scary procedures. We knew she would need to take a thousand doses of medication and we will spend many hours in the clinic and hospital. Our goal from day one was to help her be confident and secure while she fights cancer. Does Abby like pain? No. Would she rather be home having fun? Of course! But, praise God, Abby handles the tough stuff really well and is able to have a lot of fun while she is at the hospital and clinic.
Brent and I spend a lot of time holding, comforting and playing with Abby. To make things easier for her, we want to teach her to handle everything she is going through. It is a pretty amazing to watch a sweet, beautiful, 4 year old girl fight cancer like the champion she is. You could say that we specifically took responsibility for her emotional and spiritual health.
Mary (in MN) asked:
I understand through your blog that Abby gets daily chemo and that Michelle is able to give it to her (what a blessing that is). How often does she have to go to the clinic to have blood work etc done?
Most children, at this stage of treatment, only have to go to the clinic once a month, for blood work and to get IV chemo. They also get periodically chemo injected into their spinal column. Because of the complications Abby has had, her doctor wants her to be seen ever week, for an exam and blood work. She is being very cautious with Abby and I appreciate her doing it. The hope is that Abby will be able to go less frequently eventually.
Abby also has to follow up with other specialists to monitor for complications.
No name asked:
Does Sami still speak Amharic (or whatever local language she spoke while in Ethiopia)at all?
Sami still understands Amharic and speaks some. She can do it, but it is sometimes hard for her to "find" the right words. We try to encourage her to call her friends who were adopted from Ethiopia, but during some of the harder times with Abby, we weren't as good with that as I wish we were. She is now reconnecting with them and enjoying renewing her friendships.
How do you feed such a large family with probably very different tastes? Can you share a favorite recipe that everyone loves?
I laughed when I read this question. We have been blessed with many, many friends bring us hot meals and frozen food. Until just recently my cooking has consisted of setting out meals others have brought. It feels wonderful to begin to prepare food for my family again, although the food people brought was wonderful.
We serve meals that always have something each person likes, but we do not run a restaurant. If you are picky at our house you will be very hungry. Sami, when she first came home, didn't "like" cooked veggies, salad or many fruits. We always require the kids to eat a small helping of foods that are good for them. Now Sami loves salad and fruit. She even asked for salad for breakfast yesterday. :-)
We account for the fact that occasionally there will be a food each kids just genuinely does not like… but we don’t tolerate picky eaters who want what they want and that’s it. It doesn’t hurt a kid to miss a meal if they are just being picky, and when they get hungry enough, like magic, all of sudden they like the food after all.