Just as we were lamenting the lack of seasonal weather, we got hit with a heat wave. It was too hot to stay in our house with no breeze, and it was much too hot to be outside, so I did the only thing I could think of: we went to the mall. We met a friend (who also has a too-warm baby), window shopped till we dropped, then went back for more today.
I realized I am not sure what to do with Scarlett in the heat. Since she was born in October, we have had very little sun. It takes some adjusting to my usual packing list of a jacket, blanket and extra socks. I was so excited to finally dress her in her summer outfits that we have had since before she was born! I thought she would grow out of them long before it got warm, but if there's one positive side to her slower growth, it's that we get a lot longer wear from her clothes. Plus, holding a 15 pound heater against your already-sweaty skin is downright torture. So, with her sun hat, glasses, 100 SPF sunscreen, stroller shade and a frosty drink for me, we are trying to enjoy the sunshine...on the walk from the parking lot to the door of the hospital and mall. Hopefully we'll venture further soon.
Part of my delay in writing lately (besides the 80 degree room with the computer) was that we were at a hospital each day last week. Labs on Monday and Friday; blood and platelets on Tuesday; MRI on Wednesday; Neurosurgeon on Thursday. It was somewhat grueling, driving in and out each day, having her port accessed, waiting in the clinic, and taking in a lot of new information.
Now that communication has begun to flow between the Neuro-Oncology team at Lucile Packard and the Neurosurgery team in Oakland, the details of Scarlett's future cranioplasty (cranial reconstruction) surgery are under way. While the neurosurgeon originally felt that sooner was better, oncology pointed out that the chemo will cause her bones, skin and other tissue to heal much more slowly. She is also at risk for infection, which could compromise any procedures and would necessitate repeat surgery. So, the surgery will not be done until she is finished with all the chemo, somewhere around 18 month old, next Spring.
|It's hard to fully capture the startling shape of Scarlett's head in a picture. The bones shift throughout the day as gravity pulls more fluid through her shunt and out of her brain.|
We learned that this procedure, while "cosmetic" (in that it will improve her appearance) it is not optional, and will be covered by insurance...whew. Depending on what needs to happen, it could involve synthetic or even cadaver bone implants to help fill in and secure the cranial bones. It is not nearly as invasive as her tumor resections (the dura layer around her brain would not be crossed), it will require several surgeries over a few weeks. And, of course, a new shunt.
This was a huge pill to swallow, and we are struggling some with the idea of more surgery. It is so hard on her, and will be even more difficult when she is older. It is also difficult to look at such major procedures after our insurance changes; we had naively thought we were nearing the end of hospitalizations just in time, before co-pays and our payment responsibility may dramatically increase. It may affect my ability to work next year, or at least require a very flexible, forgiving position for one or both of us.