The flight to Memphis was a little hectic, and at this point Scott and I were emotionally and physically exhausted. My mom joined us, so thankfully we had some help with E. It was definitely worth the trip here, and we tried to convince ourselves to push through because we want to be able to say we did absolutely everything we could and explored every option possible for Easton’s sake.
St. Jude is a phenomenal place. They are so catering to every need, and have already thought of questions or services before we even knew we needed them. Upon arrival, we checked into the main registration at the hospital. There, they provided us with a host who explained our schedule for the day, took us to check in to housing, and then accompanied us to each appointment. At the end of the afternoon, the host showed us where we would report the next morning and explained where to go for housing. We were never left alone or wandering in what would have been a very overwhelming experience without help.
We were set up at the Tri Delta Place, the temporary family housing on campus. It holds a special place in my heart because I was a Tri Delta at A&M. I’ve always loved and taken pride in our philanthropy, but of course it takes on a whole new and deeper meaning now that my family was able to benefit from the services at the hospital. This place was incredible. It was comfortable with a bedroom and small living area, which was perfect for putting Easton down for naps and early bedtime while still having a place to hang out ourselves. There are laundry rooms on each floor, a toddler playroom, teen hangout room with computers and video games, outdoor covered playground, spacious living area with comfy chairs and couches, workout room, library room, and complimentary breakfast in the dining room each morning. There is a room with free toiletries and baby items for those who have to stay longer than intended. And here’s the most amazing part…it was all free of charge. Free. Of. Charge. Families who come to St. Jude do not have to pay for care, housing, meals, or most travel for the patient and one caregiver. It’s a research hospital, so you qualify for treatment if you meet the criteria of one of the clinical trials going on at the hospital at the time. St. Jude is doing a clinical trial on RB, but Easton’s chemo would not be experimental since his tumor is group B and not more advanced. He would receive normal protocol treatment (8 rounds of chemo and laser therapy), and the “research” part of his case would be additional testing to determine the effects of the chemotherapy, particularly the effects on his high frequency hearing. So really, the research would just be an added benefit of doing treatment here – more monitoring of the effects of the medicine with the ability to change treatments if they determined it was affecting his hearing.
We loved the team of doctors here, and they took the time to answer every single question we had this morning after Easton’s exam under anesthesia. The exam went well – they let me go back with him into the operating room to be put to sleep, and all three of us were able to be there when he woke up. He woke up scared, angry, and hungry, more so than the other two experiences with anesthesia, but other than that, he recovered nicely and had a pretty normal day afterward.
We also learned more about the state of his vision. The tumor affects his central vision, and it has already done irreparable damage to the retina. If he were to close his right eye, he would see only black in front of him, but have some peripheral vision around it. So, his left eye will always be his “bad eye.” His brain has already begun to shut off signals from this bad eye, so it will become a lazy eye (it will start to turn in or out from lack of use). We haven’t noticed this at all yet, but we know it’s coming. After chemo, we will consider patch therapy, where we patch over his strong eye to strengthen his weaker eye. It will depend on how damaged his left eye is; if he’s mostly blind in that eye, patching would do no good. I actually had to wear a patch as a child – my left eye was a lazy eye, though for a completely different reason. I wore an eye patch around 4-5 hours a day from the time I was 4 until 11. It took so many years of therapy because I was resistant (the nicest way of saying I threw kicking and screaming tantrums until I was 11 and beyond), and I’d take it off when I got to school because I was embarrassed of it. Ideally, we can start patching E before he really cares what people think to get some good work in before the challenging years begin. We’ll cross that bridge after we’ve beaten this whole cancer thing, though.
Tired after a looong trip!
We’re about to leave Memphis, and have some heavy decisions ahead. Do we follow protocol and go the St. Jude route, which would affect Easton’s whole system, dramatically change our lives at home, and add years of traveling for treatment, or do we attack more aggressively with IAC in Philadelphia with fewer treatments, yet not fully know the side effects in the years to come? We want to save Easton’s life first and foremost, but after that we hope to save his eye and his vision. It’s a huge decision that we will have to make within the next 72 hours so that we can book flights for next week.
