A Week “Off”…
Well, yesterday did not go as expected, but once again I am so proud of Hutton dealing with another set back. After the last treatment sessions, we finally think we had everything locked in. We asked for a later appointment time so Hutton wouldn’t have to be woken up so early and we wouldn’t feel rushed the entire morning, we had our packing system dialed in, and I had my truck loaded with almost 45min to spare, which was nice, because Hutton asked for 5 more minutes of sleep (which made me think of what I have to look forward to when she is a teenager :-) ), which we were able to give her. Once she got going, which is always stressful in and of itself, she knew she had to go, but like everyone else in this world, doesn’t want to, after all, who WANTS to spend 5 days in the hospital? But once she was in the car and we were on our way, I could see her mind working and processing everything as I looked at her through the rearview mirror.
Almost 2 hours later we arrived at UCLA. I perfected the parking situation(yes I know very “Dad” of me 🤣) and everything was smooth sailing…we felt confident, and we felt like we finally had this down. But of course, things out of our control decided otherwise.
The nurse who accessed Hutton’s port was “new”, which we didn’t realize until later. Nothing against her, we all have to learn somehow and she was extremely nice and doing her best, but she had an issue accessing the port and had to get another nurse to come in and move it into the right position, which was unexpected for Hutton and caused her a great deal of pain. As heartbreaking as it is to watch and see EVERY.SINGLE.TIME, she dealt with it well.
They took her labs and we met with her doctor, got a lot of clarifications on some stuff, and discussed some of the questions that concerned us, he gave Hutton the prescription to eat as much ice cream and milkshakes as she wanted which she was thrilled (trying to keep her weight up which is extremely difficult). We then went to In-and-Out for a shake and fries (she tried a cheeseburger but it was “disgusting”) while we waited for a room to open up. As soon as we pulled into the drive-thru we received more news that was outside of our control. Hutton’s numbers were not high enough for treatment this week, and she needed another blood transfusion. Hutton heard this and was now upset that we WEREN’T staying. Not because she wanted to but because she went through that ordeal with her port and now was going to have to get it removed. Since she needed a transfusion, we were able to explain how this happens sometimes and the port still needed to be accessed. And bless her heart, she started crying and apologizing for her numbers not being good enough for treatment. We had to explain to her that it happens sometimes, that her friend Bradley (who we were representing by wearing his shirt) had the same thing happen to him, that it wasn’t her fault and she had nothing to be sorry for. Again, she was able to take this news in stride and overcome everything. She successfully completed her transfusion, which was finished just in time for peak LA Traffic back to Orange County. ETA 2 hours. Looking at that drive time, 2 things I have been meditating and praying about helped me handle it without getting upset or agitated.
Everything that has occurred so far with Hutton’s diagnosis, doctors, and treatments, has happened so succinctly that there is no way it is all a coincidence. God has had His hand touching this beautiful girl from the moment she was born. Even if we cannot see the “why”, He has placed us at that exact moment and at that exact time for a reason. All we need to do is have FAITH in that. Because who knows, the “setback” today could have protected her from something even worse tomorrow.
I am also reminded of the single most important practice in Stoic philosophy, which can be simply put: “You don’t control what happens; you control how you respond.”
With all that being said, we got home around 8 p.m. that night and are now looking forward to an unplanned week off from the hospital. Hutton is going to rest as much as possible, eat, and hydrate, and we will be returning next week to continue the fight and stay Hutton Strong.