On commonality and the meaning of harambee



So you are probably saying to yourself “That’s really cool, I never knew what that word meant.” I had no idea either, but when I saw this I was taken aback by how much it parallels with everyone that has pulled together on so many levels for the #EmmeSmiles journey, the fundraising for her medical needs and the timing of a slogan from an independent government during one of the most tumultuous times in American government during my lifetime.

But what in the heck caused you to search for that?” Let’s go backwards a bit.

On commonality……….For those of you new to Emily’s story, or just those who forgot since it’s been so long, she had whole exome sequencing performed about four months ago. Checkout this previous post about what whole exome sequencing is, and means to our situation, if you haven’t read it before. As the previous post states 75% of the time the whole exome sequencing doesn’t return a known genetic disease. And for all of the uniqueness surrounding the life of Emily this was the one time she wasn’t, kind of. Her test came back inconclusive. Whats that mean? Obviously she has medical issues, thats not debatable. What the test wasn’t able to determine is any known genetic defects in her DNA. For those of you who have followed her story from the beginning we have been told by numerous specialists that she could have a genetic defect that hasn’t been discovered yet. She literally might be one of a kind for all they know. Unfortunately this test confirmed that, it just wasn’t the confirmation we or the doctors in Minnesota were hoping for.

Per the pancreatectomy team at the University of Minnesota, this test was supposed to give them the insight they needed to make a more informed decision around the state of her metabolic system, readiness for surgery and what struggles she would face in recovery. We left our consultation up there with the understanding that this test was just a necessary step in the already long process to have her pancreas removed and the insulin producing cells transplanted into her liver. They didn’t let on that an inconclusive test would carry the concerns they are now sharing with us.

While we were waiting for the whole exome results we didn’t hear much from Minnesota. Our doctors didn’t hear much from them either. But they did hear from another hospital.

When we were determining which of the handful of childrens hospitals in the country we wanted to go to for her total pancreatectomy and auto islet cell transplant Cincinnati Childrens Hospital was on our list. While their reputation was good, and it was much closer, we ultimately decided based on numerous factors that the University of Minnesota was our best bet. But during the vetting process we talked to the team at Cincinnati. Like most specialists that hear about Emily they show tremendous amounts of interests in her case. Its both comforting and worrisome to have world renown specialists consistently take interest in your daughter and her medical history. But the team at Cincinnati was different. They kept in touch with our specialists at Riley. They proactively called to check in on her status, even though they werent in the running to do her surgery. During her last inpatient stay they even offered to transfer her down if her stay got lengthy. They showed genuine concern for helping her. At the same time our specialists struggled to even hear back from the surgeon in charge of the team in Minnesota.

Armed with a bunch of concerns that werent raised during our consultation, the prospects of her case being too unique overall and their apparent lack of proactive concern for Emily after our consultation was over we asked our Riley team their thoughts. Dr. Gupta had been slowly dropping hints that he wanted us to go to Cincinnati for a second opinion. Even before the results of the whole exome sequencing came back he wasn’t getting a good vibe from Minnesota. While we enjoyed the majority of team during our consultation and felt comfortable at the facility and in the town we had our doubts. But, at least for me, I wanted to hear their thoughts after the results of the testing. We had chosen them for a reason and I didn’t want their lack of communication to be a big negative if they were in fact the experts in the procedure. But after the feedback they provided once the test results were known we felt certain a consultation trip to Cincinnati was necessary.

We felt a wide range of emotions about the feedback Minnesota provided. Our new GI specialist at Riley (Dr. Gupta took a promotion in Peoria) said he felt it came down to the simple fact that Emily multitude of issues outside of her pancreas was too much for their overall team. They made lots of excuses that our team wasn’t concerned about. They raised some other questions that we have as well, but at the end of the day everyone is in agreement that she needs the procedure sooner rather than later. We understand her myriad issues aren’t going to be completely solved by this procedure. We also can’t start to tackle those, and start to take away her daily pain and heavy pain medication regime without this procedure occurring. So on November 15th we will be going through a similar 4 day consultation in Cincinnati as we did in Minnesota.

We will meet with the heads of each department this procedure touches; GI, metabolic, genetics, transplant surgery. They will run a battery of tests. They will evaluate her in clinic. We will raise the concerns Minnesota had to gauge the level of concern Cincinnati has. And we will hopefully get to the Cincinnati Zoo. You may have heard about a famous ex-resident of theirs, Harambe.

When explaining why he chose to submit the name Harambe in a contest to name a baby gorilla Dan Van Coppenolle stated “It’s a Swahaili name meaning working together, pulling together, helping each other, caring, and sharing.” We have had so many people exemplifying the meaning of that word on this journey that its fitting that we are bringing more people into Emme’s story and hopefully pulling together to start her journey of healing.

We all could stand to work better together right now, and always. Here is to hopefully finding a transplant team who is more willing to uphold the true meaning of harambee for the sake of our Warrior Princess.

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