As the 1 year mark of Sarah’s entry to heaven is here, I’ve found myself reflecting a lot about our journey. I think it’s normal to question our decisions that we made, as they pertain to someone that we’ve lost. Honestly, when you’re grieving, thoughts of your loved one are never far, but I’ve been specifically taking a more detailed walk down memory lane. Sometimes that’s good and sometimes that’s not so good. All the hard memories are still so fresh and raw in my mind. I know that we’re through the worst of it and the important thing is that Sarah is healed and whole now. She is ok. However, I still found myself contemplating what should we have done differently, if we could go back in time?
Obviously, the first thing that I often wonder is if I should have taken her to the doctor earlier for her pain. There was nothing visible or any physical limitations that she was experiencing. She would take some Tylenol because her shoulder ached and then wouldn’t complain again for another couple of weeks. It was just so intermittent and never seemed that intense, until it was. That’s when we decided to go to Riley. Maybe it’s just me justifying my decision as a mom, but if we would have gone sooner, would it have changed anything? Maybe, I guess we’ll never know. What it would have changed, if we had gone earlier, is that she would have been pulled from school and the life that she knew. Some of her most favorite high school memories happened in the weeks before her diagnosis. She was a freshman in high school and finally gaining some independence from mom and dad. She attended the RYLA conference, an FFA retreat, FFA convention, which honestly I know gave her courage for what was about to happen. So, it’s very hard for me to imagine how different things might have been had she never had those experiences. She made some really special friends during those events and matured as a person.
Should we have sought treatment somewhere else? Sometimes families that are fighting pediatric cancer end of traveling very far to receive treatment. Sometimes they end up in New York, Texas, or at St Jude’s in Tennessee, or even other hospital’s across the nation. There were times when we questioned treatment options, but we also knew that Sarah’s Doctors were consulting with other doctors about her case in some of those very places. If we would have started treatment at another hospital, I feel like the strain on our family would have been even greater, especially during COVID. I know that the relationships that Sarah made at Riley were precious to her. She felt loved and cared for by her doctor and nurses. The protocol would have been the same at any other hospital- as they all follow a plan that is devised for all of the pediatric oncology units that are networked together. Again, we could always wonder if another drug or chemo combo would have worked against her tumor, but that same chemo could have made her life a living hell. What we tried, was tolerable, until it just wasn’t effective. I completely understand why sometimes cancer patients refuse treatment and just decide to live out their days. I feel like Sarah was still able to be herself and enjoy some quality of life, despite being so sick.
Should we have brought her home for her final days? I don’t think about this one very long. I absolutely feel like we did the right thing staying at Riley through the end of her life. Although the moment that Sarah went to heaven was very sacred, I am thankful that I don’t associate that memory with our home. That was just our preference for our family and for Sarah. Our immediate family was allowed to stay in her room 24/7 so that we could all be together. Sarah appreciated that. She just wanted the 4 of us to be together and we were. We knew that her pain medications and oxygen needs were going to change drastically. So remaining there meant that we had quicker access to the help that she needed. Even the greatest hospice provider can sometimes struggle to support families in rural areas and honestly, pediatric hospice care is quite unique. Her healthcare team went above and beyond to honor and care for her during her final days. They actually still do. Several of them attended her Celebration of Life and I still receive messages from some of them. I have so much respect for the whole Hem-Onc unit. After all, they fight the cancer beast for kids every day. It’s such a hard job, but thank God that they feel a calling to do what they do. I’ve honestly heard several of them say that they absolutely look forward to the day that their unit is no longer needed. However, until that day, they are there for “their” kids and the people who love them.
Maybe, the one regret that I have is not getting Sarah’s Make-A-Wish going sooner. Honestly, she wasn’t sure what she wanted to ask for and COVID really slowed down the whole process. Also, we would have risked a delay in her treatment had we attempted to travel or even spend a day out of the hospital. Ultimately, she decided what she really wanted was to sing and hang out for a bit with the Elevation Worship team from South Carolina. We were in the process of trying to set-it all up, but we simply ran out of time. However, a few days before she passed, she actually received a couple of very special video messages from 2 of her favorite Elevation Worship Team members. She was so excited to know that they were praying for her and were inspired by her faith. It meant so much to her! God totally arranged for it all too because the Make-A-Wish had nothing to do with how she got the messages. He’s good like that. Actually, as I think about this wish of hers for the ultimate worship concert, I’m reminded that she is living out this wish for all eternity now. That makes me smile.
So, would I have changed anything? My answer is probably-no. It all played out like it was supposed to. I know that Sarah’s quality of life changed a lot with her cancer diagnosis, but she was still able to be herself and find joy in her relationships, new and old. I’m sure the “What if’s” will not completely go away and that’s ok. I just can’t let them dominate my thoughts. So, I’ll choose to replace the “What ifs” with the “What nows?” and just keep moving forward trying to do the next right thing to honor her and her memory, until we’re reunited some day.