I had the opportunity to go on an official visit to Le Bonheur today and take the “Le Bonheur 101 Tour”. I went as a part of the John Dustin Buckman Charitable Trust and was surrounded by many friends; one, my boss, Joe Duncan, and two, my pastor, Charles Fowler. Even the LeBonheur officials knew of my situation and when we would go from floor to floor, doctors would console me about my loss.
The first area we went through was the ER. I looked directly at the seats where the Newman family had been sitting when I came out to tell them that Trey had cancer. A memory that was so vivid. My knees just gave way. I guess someone saw that and Joe asked me if I was okay. I said I was fine, just fine.
You see, St. Jude wasn’t actually the first to tell us about the cancer. We knew it was a mass. We just didn’t know what type. It was when we got to St. Jude that we regained our hope. Not that you don’t have hope at Le Bonheur!
We went through surgery and I saw a mother standing next to her child and I heard Dr. Eubanks explain to everyone else how it has been such a big change to let parents now stay with their children until they are fully asleep before their surgery. I thought back to our time with Trey in the Le Bonheur ER and how we told Trey we would never leave him. I was with him through every procedure when they put him to sleep. I even stayed in an entire procedure at West Clinic and never left the room. That was his last procedure about two weeks before he died. That is so important to the child. I’m so glad the physicians realize that.
We went through the neuroscience department and they were testing epileptic children by EEG. I smelled that glue a mile away. I’ve had so many EEGs I cannot count. That’s the first thing they slap on a migraine sufferer are the EEG leads. I did ask if the glue was still hard to remove from the head when I was a Le Bonheur patient and they told me things had not changed.
At the end of our tour we were able to eat lunch and talk about what we had experienced. I didn’t really say what I wanted to say as the mother of a former patient, even if Trey was only a patient for a couple of days. Someone did touch on the fact that when we were walking down the halls you forgot you were on a tour and you realized the families were experiencing real life trauma. My thought was, and yes, some child will not go home. Or, a family will go home tonight without their child and they will feel the emptiness and loss of a lifetime.
It doesn’t matter how you decorate a hospital, guide a tour, or have the bigger rooms than the next hospital, if you do not have the latest in patient care and research, it really does not matter. If I knew of a hospital today doing research on the P16 gene, other than research facilities, I would be in touch with them asking them about their clinical trials. There is just so much out there that people need to be educated about. And yes, even patient care services is part of it. That means knowing how to take care of the sibling once the other sibling has passed. We have not tapped into that service at St. Jude but I believe it is time to utilize that service with Collin.
Collin is suffering internally. His grades are suffering. He does not talk about Trey. He has a new diagnosis to deal with regarding food allergies and two new medications. It just boils down to a lot to deal with for a 13 year old. Why some people aren’t reaching out is beyond me. I’ll say it again. I’m 47 years old and this is the most difficult time of my life. I don’t know how Collin is even functioning. Basketball season starts soon and we pray that will begin a revival in all things new.
We know that God has a purpose for every child in Le Bonheur. I just walked down the halls and prayed for the children as I felt like weeping. I hope during this holiday season you will remember those who are ill and hospitalized. All it takes is one visit to make someone feel special.
For these children I pray: “God declares with confidence that things can change— “See, I am doing a new thing!” Isa. 43:19