Hello from Houston!
As some of you may know, Mike, Ellie and I have traveled to Houston this week to get a second opinion on Ellie’s treatment. For the past several months, Ellie has been ill without clear explanation. While not out of the realm of possibility, her status was not normal for a child at this point in treatment. That, along with various conversations and a parent’s intuition, we decided it would be best to have a fresh pair of eyes evaluate Ellie.
At this point I feel like I should interject and say that we LOVE her doctors, nurses and staff at St. Joseph’s and think that they have done an incredible job with Ellie’s care. This is a decision we have made entirely on our own. We are her parents and ultimately are the ones responsible for her well being at this point. We haven’t been able to shake the idea of a second opinion for several weeks, and after her most recent hospitalization, it seemed like the time was right. The best outcome of this trip would also mean that we wasted time and money. We were ok with that if it meant that we gained peace and clarity. We did not want to have any regrets with her care.
Why Houston? Why not stay closer or go somewhere more well known for children? Why not All Children’s, Shand’s, St. Jude’s or (insert other pediatric oncology hospital here). Simply, we have a connection here. Ellie had her reveal for her Make A Wish trip back in December. At that time we met the gentleman that was going to generously fund her trip. While speaking with him, he told us that he was on the board for MD Anderson and gave us his card. He emphasized for us not to ever hesitate if we needed anything from him. Anything. At the time is was a kind gesture, but seemed unnecessary. Fast forward a few months and a hospital stay, and we felt it was time to take him up on his offer. While planning this trip, we also realized that we had another connection to a pediatric oncologist in Houston. The opportunity to consult with two separate doctors at two different hospitals seemed to confirm our decision to leave.
So, here we are. We have consulted with both doctors and are happy to report that all opinions are in harmony with one another. They confirmed that Ellie was getting the proper treatment, but offered ideas on future tests to run and tweaks to be made to her treatment for optimal health. We have peace, clarity and a plan as a result. We feel like this was the best possible outcome for this trip, as it allows us to return to Tampa and have Ellie continue her treatment there. After the consultations yesterday, we tried to get an earlier flight home but were unsuccessful. So we are enjoying our mini vacation with Ellie and will return home on Friday evening.
Are we crazy for doing this? Maybe. It certainly was a question we asked ourselves a lot while planning. The best way I can explain it is this: we live in a world of crazy. With pediatric cancer, we now live in the world of “that would never happen”. Because it did happen. Ellie got cancer. She is within the small percentage of children to develop cancer, and because of that, nothing seems impossible. What if Ellie were in the small percentage of leukemia patients that doesn’t respond to treatment? What if she has a rare reaction to chemo? What if she’s developed another rare disease? All of these things seem possible to us, because the impossible already happened in April of 2016.
What have we learned from this process?
Ellie is more fragile than we thought. A cold, the flu or other virus are very serious threats to her health. We may not see the changes immediately, but they are happening. Her counts have slowly dropped over the past couple of months. Her physical appearance has also changed quite a bit since last fall.
Overall, Ellie has responded extremely well to her treatment. She was the model patient for a long time, responding exactly how the doctors expected her to. Once she was no longer the model patient, once all of the changes started happening, we began to worry. Our concerns were valid and we are so glad that we had the opportunity to speak with other doctors.
We are fully aware of how fortunate we are to even have this opportunity to travel for Ellie’s care. This trip would not have happened without the help of many people. Most we know, but some we do not. To everyone that helped make this trip and these consultations possible, we are forever grateful. Our parents have been a source of constant support, never once doubting our decisions. They have encouraged us, helped us and dealt with many complex things along the way, so we can solely focus on Ellie. Thank you for your never ending help and support. We are continually blessed by your love.