Scarlett's healing has continued last week. We stayed home from all of her therapies to give her time to rest, and it has helped. Over the weekend, she really perked up and is now feeling pretty good as we get back to our regular schedule. She is almost back to her pre-surgery baseline, but still tires easily. At her follow-up appointment last week, the neurosurgeon was pretty happy with himself - he keep commenting on how smooth her forehead is, and how symmetrical her face is - good!
Later this week, she will have another follow-up to check the new shunt's progress (her brain had almost come back to its proper position after just 8 days). Then on Friday, she will have her next quarterly MRI to check for any tumor progression. This means two MRIs this week - two different types at two different hospitals. I wish I could say that they are no big deal, but I still get nervous for these tumor checks.
I need to back up a bit and share our camp experience a few weeks ago. We had such a fantastic time! Unfortunately, we had such a good time that we barely remembered to use the camera, so we don't have much to show!
|Our cabin, with the large deck where summer campers sleep outside.|
|One of a few lakes, with a craft building, canoes, and a swimming dock.|
|The awesome zipline - mommy and daddy both took a turn, but Scarlett did not appreciate the harness - maybe next year!|
|Scarlett and daddy singing at the campfire|
Camp Okizu was started 30 years ago to provide a getaway for families with children who have fought cancer. The camp is in northern California, in the mountains above Lake Oroville (about 3.5 hours from us). It is open to families from all the major pediatric oncology centers in northern California - Lucile Packard at Stanford, Children's Oakland, Kaiser Oakland and Roseville, UC Davis, UCSF, John Muir and a few others. Each summer, hundreds of kids who have fought for their lives get to escape their reality and enjoy some time in the woods swimming, fishing, canoeing, climbing ropes courses, swinging on zip lines, playing games, singing at camp fires, sleeping under the stars and enjoying the freedom of being accepted in a group of kids who understand what they have been through.
But patients are not the only focus. Okizu offers a very unique experience: SIBS camp, or "Special and Important Brothers and Sisters". The idea of having a healthy child in addition to a patient is overwhelming, but it is a reality for many families, who must find ways to balance the attention and resources for all their children; Okizu gives those super sibs a chance to get away with other kids who know what it's like to be surrounded by sick.
Finally, we attended one of the many weekend family camps, this one specifically intended for families of brain tumor patients. It was the first time we have ever sat in a room with a group of parents who know what we have been through. They knew our fears about MRIs, the lingo of brain trauma and, probably best of all, they could laugh with us about things that are funny for us, but that other people just don't understand. There were 7 brain tumor families in all; Scarlett was the youngest by many years, and was the only girl, but we still had a lot in common with the other parents. We listened to their stories, commiserated on some of the all-too-common struggles and shared the roller coaster than is parenting Scarlett.
We were very lucky to meet some amazing people that we hope to see every year. Some have been attending for more than 10 years, since their now-teenagers were little. One family has been seeing the same neurosurgeon as Scarlett for nearly 10 years, so we immediately had a lot in common. Everyone had an amazing story, and an amazing kid to show for it.
The parent discussion groups were open to whatever the group wanted to discuss, but the second day, focused a bit more on the effect that such heath crises have on siblings. It made me so grateful that Scarlett is our only child, and that we have been able to focus on her needs exclusively; I can only imagine how difficult it would have been to manage another child's needs over the last year. Since we were the only family there with just one child, we didn't have much to add to the conversation, but we did get a chance to share our concerns about future children, and the trouble we have considering another child amidst Scarlett's needs.
Thanks to corporate sponsors and lots of fundraising, Camp Okizu is free to all campers, including meals, the beautiful camp facility and all activities. We felt so lucky to be able to go, and were so glad that we were able to convince the surgeons to wait a few days so that we could get some fresh air before all those days in the ICU. We can't wait to go next year, and for Scarlett to get the chance to go to camp (once she's a little older!). If you would like to read more about Camp Okizu's mission, you can visit their website at www.okizu.org.