Peter has come a long way from the critically ill baby who spent weeks at Hopkins in the winter of 2018-2019. When we saw our rheumatologist last week, she said, "This is the best Peter has ever looked! He just looks healthy!" and I agreed. His eyes are less sunken and dark, his skin isn't as pale. In a few months, he had gained two pounds and grown significantly, going from the 20th percentile to almost the 40th. While the transition might have occurred over a couple months, getting Peter to this more stable, "robust" (another word our rheumatologist had used) place was years in the making.
As I've mentioned many times (to basically anyone that will listen) our care team at Hopkins saved Peter's life and saved us as a family. We do our part at home by tracking Peter's symptoms, emailing, and reporting to the doctor (LOTS of email and reporting). Beyond that, Dr. Shalen, Peter's rheumatologist, is always following up with us independently, checking in after he has had a flare (fever episode), and inquiring about new developments, modifying his care plan as needed. This alone is amazing. Feeling like you're part of a team and that your doctor is invested in your child's health is something I wish for all parents. Recently, I received a message from Dr. Shalen saying she had discussed Peter at the weekly division rounds and wanted to complete additional testing. It sounds simple, but the more I thought about it, the more grateful I felt for the care we receive. I think most people expect to have their doctor's attention during an appointment or when they reach out with a question. Knowing that your child is still at the forefront even when you're not there, not onsite, not actively engaged, is amazing. This is the level of care that the doctors at the Johns Hopkins Children's Center bring to all their patients. Collaboration and information sharing that may not always be visible but makes all the difference. Caring for their patients even when their patients aren't there.
Once again, I wish that all families could experience this level of care and support. Unfortunately, institutions like Hopkins are facing a series of challenges. In April, Johns Hopkins lost $ 800 million in grants, directly impacting its research, public health, medical, and international health programs. The cuts resulted in over 2,200 employees being laid off. These cuts affect a wide range of people in numerous ways. For our family, when you have a loved one who depends on medical care from Hopkins to keep your child healthy, these cuts are terrifying. Peter's health issues are still evolving and require his team to stay on top of the latest research. Donating to Hopkins is a small step towards filling the huge gap left behind by these cuts.
I also read an eye-opening article in the New York Times: "Why Doctors Aren't Going Into Pediatrics." This discusses the lack of medical care available to children nationwide, the shortage of pediatricians, and the decline of pediatric specialists, such as rheumatologists, without whom Peter may not be here. (PLEASE, give it a quick read if you have time.)
https://www.nytimes.com/2024/07/01/opinion/pediatrician-shortage.html?smid=nytcore-ios-share&referringSource=articleShare
There are so many reasons to give to an organization like Hopkins. We give back for Peter and our family and to help ensure the families that come after us have the same level of care we've received. We hope you'll join us in supporting the amazing doctors, nurses, and staff who have helped turn Peter's life around.
Thanks as always for joining in our mission!
Steve, Sarah, Peter & Charlie
