Emily’s health has continued to improve, and she is moving along through Maintenance with no complications (aside from the broken leg, but that’s old news already). At the Children’s Surgery Center earlier this week, I was pleased to run into a grandma we met last year who’s grandson was diagnosed near the same time as Emily. Because both our children are on Maintenance and are no longer in the Infusion Room everyday, we haven’t seen each other in a few months, so it was so good to catch up and hear how her grandson is doing. And she enjoyed seeing Emily. We agreed that having a child with leukemia has become so normal, that we often forget it’s not. But the hospital is home (away from home), and all the doctors and nurses are friends. Emily is doted on whenever we’re there, and she loves going. Sometimes I look around the pre-op room in the surgery center and try to imagine what the other patients are there for. Most are there for simple procedures (sometimes I overhear them talking), such as having their tonsils out or having ear tubes put in, and I wonder what it would be like to just be there for a simple procedure. Although, honestly, Emily’s never had a complication, so her procedures seem very simple. I still go into the operating room with her for each spinal tap, and I pray my heart out over each vial of spinal fluid drawn, that it would come back clear, free of leukemia cells (so far so good!). We have one year of treatment left, then a lifetime of follow-up care. That seems worrisome, typing it out like that, but just as we’ve trusted God with her life so far, we will continue to trust Him with her long-term health.
Recently we’ve had some really fun opportunities to connect with other cancer families. I am constantly amazed at the amount of support available to us, and we took advantage of it a few times this past month!
On Mother’s Day, the American Cancer Society organized a Courageous Kids event at Great America. We received free tickets to the park and then got to participate in some fun activities and a picnic lunch on the fairgrounds. Emily had fun, but so did her siblings, which is sometimes even more important.
Emily & Sophia at Great America on Mother’s Day
Over Memorial Day Weekend, our whole family spent a relaxing three days at Camp Okizu, a camp begun and run by two Oncology doctors for families of kids with cancer. To be honest, I wasn’t 100% sure we would like it, because it sounded a bit cheesy, but once there I realized the immense benefit of connecting with other families in similar situations. Not only for Jason and I, but especially for our children. We arrived Friday night and left Sunday night, and we really only saw the boys at mealtimes! They were in absolute heaven on the 500 acres of camp land, playing on the ropes course, fishing and canoeing in the lake, and making great friends in the rec room. The camp is set up so that on family weekends, the parents are broken into small groups where they can discuss their situations and ask questions. All the children are taken to different activities. The camp is staffed by mostly college-aged kids who are either cancer survivors themselves or siblings of cancer kids, and who’ve grown up attending the camp. The two Oncology doctors are there every weekend as well, facilitating the parent groups. Also, nurses from all the local hospitals (ours included) take time off work and volunteer to head to camp as medical staff during each of the camps. The comforting thing for me, is that these guys -doctors, nurses, camp counselors -are all familiar with cancer, Broviacs, the risk of infection, sanitizing procedures, etc. It truly is a blessing. I’m sharing just a few of the pictures below. I was too busy to take many, but you can get a feel for it at least.
Camp Okizu’s Main Lodge
Looking out over camp
Half of our cabin
Emily loved swinging on the ropes
Adam & William at the top of the Giant’s Ladder
Adam tightrope walking
Ethan shimmying up the tree
On the lake
The best thing about Camp Okizu? We get to go every year! Each year camps are held for families, cancer kids, and siblings. In fact, the boys are all leaving for SIBS (Super Important Brothers & Sisters) Camp on Monday for a week of awesomeness. They are so excited, they can hardly contain themselves 🙂 And when the girls are old enough, they’ll be able to go as well.
The last event we got to enjoy was just last weekend. The Sacramento Zoo hosted their annual Dream Night for families with children with chronic illnesses. It was super hot, but it was fun to just get out as a family.
At the zoo
That’s all for now! Oh, Emily did get her cast removed on Wednesday, and she didn’t need another cast! Her bones are still weak, but they are healing nicely. She is very hesitant to put weight on her leg, but it’s hard to tell if her leg hurts or if it’s just a little weak. I’m sure she’ll be up and running again in no time. In the meantime, here’s a short video of her with her cast on, so you can see how she got around this past month (when I wasn’t carrying her, of course!).