Dad, crushing the blog posts… And as usual… Trying to make ALL OF US CRY! When you deal with this firsthand
for weeks on end, it becomes normal operating procedure to see other parents and siblings dealing with their own issues all around you. From a fresh set of eyes like Dad’s… His “take” is a bit refreshing and sad. Though it does make me feel hardened and callused in some ways that I look past the struggles around while I am in Memphis. I guess I feel like we are all in the same boat.
St. Jude – Tuesday.Summer ended up only having five appointments yesterday. I didn’t read the schedule correctly when I read it on her phone. Still, a full day. We found a parking space close to the front entrance, so that was a winning way to start it. Summer’s first appointment was at 9:00 in the psychology department. This was only her second one, and she wasn’t too sure what to expect of it. When she came out an hour later, we asked her how it went. She said it was fine. She said it began with “Ok Summer. You are 21 years old and you have brain cancer. With that being said, there are still things that you like to do. Let’s talk about those today.” I thought that was a really blunt way to begin, but Summer seemed fine with it. I asked her if she felt like the appointment was helpful, and she said thought it was. We had to move on quickly because her next appointment was to begin in three minutes!We walked as quickly as she could to the rehab department. They took her in right away for physical therapy, and the right on to occupational therapy. Julie and I had an hour to wait. The area was very busy with lots of kids and their families coming and going, so the time went fast. We weren’t there long when we could her a baby screaming. It was one where you could tell it was from pain or fear, or both. A young mom came around the corner pulling one of the St. Jude baby wagons. Her little boy, probably around 12 months old was laying on his back in the wagon, and had a port coming out of his right arm. Her daughter, probably about 5 or 6, was following. The mom was on the phone with her husband, updating him on what was going on. She opened a bag she was carrying, pulled out a syringe and bottle of medicine, and then gave her son the medicine through his port. While she was doing this, the little girl got into her mom’s purse and pulled out her phone. She s quickly scrolled through some screens, and you could hear soft lullaby music. She learned over her brother and spoke softly to him. She placed the phone by his ear and he immediately calmed down and almost smiled at her. He softly whimpered for a minute and then was quiet. I almost felt relieved when that little boy felt comforted. It’s hard to imagine what this family (and so many others) goes through every day to keep their child alive and get them healthy. Julie said it’s hard enough watching Summer endure what she’s going through, but at least she understands what is happening and why the treatments are what they are. Then a dad pushed his son (probably about 17 years old) up in a wheelchair and sat down next to me. His son had an artificial right leg. While they were waiting for their appointment, several of the rehab employees came by and “hey there! It’s just about time for a new one of those isn’t it?” Obviously, they all knew him, and he was familiar with them. He smiled a big smile at each of them and said “I’m ready for a new one because this one doesn’t fit anymore!” He was so happy! I really need to recognize more positive moments in my life.When Summer came out, we had to move on to the “Med Room” for her chemo. While we waited for them to call her in, we asked her how her last sessions had gone. She said they made her play the Operation game. It is to help her redevelop her eye to hand coordination on her right side. I had to laugh because she HATED this game when she was young! She assured us she still hates that loud buzzing sound every much today as she did back then! They also made her do things to help with her walking and balance. These exercises are really hard for her right now, and tire her out quickly. She told us she knows it’s helping her, but still hard to do. We didn’t wait long till Summer got her call to come in. She had the same person give her the chemo as on Monday. This young lady was really sweet to all of us again. St. Jude really has the kindest people working there you could ever want help your child and you through this kind of process.With chemo done for the day, it was after 12:00 and time for lunch, so we headed to the cafeteria. Summer got pulled pork nachos and a chocolate brownie. She slowly ate small bites of the nachos, but did do a little better with the brownie. She said she’s better if she spreads out her eating through the day with really small portions often. We just keep nudging her often. When we finished there, we moved on to radiology. Her appointment wasn’t until 2:45, but she wanted to see if they might get her in early again, like they had on Monday. I pointed out that it seems like all her radiation appointments are so late in the day after all the others. She told us that the older kids always are last. They do the babies and small children early in the day, because each of them have to sedated before their treatment, and then brought out of sedation after it. Every day. She said she will gladly go last and do the treatments without having any kind of sedation. Summer can really keep things in perspective! The department was busy, and they didn’t call Summer in until a little after 3:00. This seemed like a really long wait. I was getting sleepy but trying to fight it off. The next thing I knew, I opened my eyes and Summer was looking right at me with an ornery look. I asked her what she was up to. She said “oh, just talking to my Dad!” I guess I can’t say I was surprised to see a photo of me sleeping on Eric’s blog…When Summer was finished with radiation, we stopped at the St. Jude gift shop for a bit, and then headed back to Target House. She was really worn out by then. She slept for a couple of hours and came out of her room looking much better. We are some dinner and watched a movie together before going to bed. It was definitely a full day of learning for Julie and me. We are so thankful Summer is here.