On December 23rd, my brother was at our house for the last time. That night was probably the worst night my family and I had ever experienced. My brother was sitting on the couch when things went downhill, and they went downhill fast. I will spare some of the details for not only my own sake but for his as well. He had been unable to walk for a few weeks, but he wanted to take a shower, so my parents carried him upstairs and got him into his shower chair. Within 5 minutes, he told my parents he could no longer even hold his head up. We were unsure if this was another delirium episode, or if this was a real physical problem. My dad called Ryan’s doctor, and he said that if it didn’t pass in an hour, it was time to take him to the emergency room once again.

I had made plans with my friends that night, and my parents told me to go despite my brother’s condition. Though it was always hard to walk away, I knew there was nothing I could do to help, and that Ryan would want me to go. While I was at my friend’s house, my brother was transported to Hershey via ambulance. This would be his last trip there.

When my brother arrived, his doctor had already set up a room for him in the ICU and they began to run tests. There’s a thing called lactate in your body, and while I don’t know what it is, my parents explained it to me like this: if your lactate count is at a two, you’re in septic shock… Ryan was at a seven. His kidneys were failing, his blood pressure was dangerously low, and the fluid that the cancer in his abdomen produced was increasing to the point that he could only use about half of his lungs to breathe. Another CT scan was ordered, and the cancer had spread an impressive amount. He was intubated yet again – they tried to remove the tube three times, and each time he was still too weak to breathe on his own. After the third time, the doctors told my parents that it was time to make an impossible decision. If they were to reintubate Ryan, he would never come off of it – but if they didn’t, he would be moved to comfort care, meaning he would be made comfortable until he passed.

 

At this point, I don’t remember the exact date. But at some point in October, my mom called me at 7:00 am and told me that I needed to come home. My brother had gone into the emergency room at the Hershey Medical Center the night before with level 10 pain, causing the doctors to order a CT scan. When the scan came back, the doctors told my parents that Ryan had an obstruction in his bowel. They told my parents that they now had two options: let him go, or attempt a nearly impossible surgery. As most parents would, my parents decided to attempt the surgery, because giving up just wasn’t an answer.

After locating the surgeon who had operated on my brother before, my family began the waiting process. While this was happening, I was two hours away at school sitting on the roof of my building, covered in snow, bawling my eyes out and waiting for my mom’s friend to arrive and take me to my family (at this point I didn’t have my car up with me at school). About an hour and a half later, my phone began ringing again, this time it was my dad calling me. My heart dropped, and I shook while I answered my phone. Much to my surprise, the doctors had read the CT scan wrong, and my brother was okay enough for me to no longer be afraid of not getting to him in time to say goodbye. We weren’t out of the woods yet, but I knew I would be able to see him alive one more time.

When I got to this hospital, my whole family was there together in the waiting room. A few teary hugs later, my mom told me that while there was no immediate danger, my brother had a serious bacterial infection and would remain in the Surgical Intensive Care Unit for at least a few more days. We had no idea just how bad it would become.

Ryan ended up being in the SICU for around three weeks. He suffered from something called delirium, or “SICU psychosis“, as the nurses on the floor had named it. He hallucinated so badly from the intense pain medication and having gone under anesthesia that he began fighting anyone who tried to treat him and didn’t even recognize our parents. Due to this, they had to intubate him. I made the mistake of going into his room with my parents the one night before I went home, and saw my brother in a state that has burnt images in my mind. Because my brother was young and “strong”, as the doctors told us, despite him having incurable cancer, of course, he struggled to stay under sedation and gave the bed restraints a run for their money as he tried to take the tube out of his mouth.

After visiting home for a little less than a week, I returned to school to try and continue life as normally as I could. In a few weeks, my brother would be home, but it was just the beginning of the end.

The past few days have been rough, to say the least. Wednesday night I had my first Thon meeting, something I was looking forward to greatly. I wasn’t disappointed, and had a great time, leaving the meeting in a wonderful mood. However, the rest of the night was not so great. I couldn’t sleep for an unknown reason, and once I finally did, I had a terrible dream about my brother. When I woke up that morning, I was so shaken that I reached out to my mom. We texted for a bit, and then she told me to call her later that night. However, when I called my house at around 9:00 PM, a time everyone should be home, the phone just kept ringing. I took to Life360 (my mother is insane and tracks me) and saw that my whole family was at the Hershey Medical Center. I immediately texted my mom, wondering why they were there, and why no one told me. When she called me on her cell phone, I finally got answers. My brother was in the hospital yet again because one of his four treatments had given him a blood clot in his liver.

Upon doing some research, I’ve discovered that blood clots are a common side effect of cancer treatments, and stomach cancer is one of the types that see clots the most. What I wish I hadn’t seen when researching was the fact that these clots can often be fatal. Another aspect that worried me was the fact that most articles said that the clots were in the patient’s arms or legs. Given that, why did my brother have one in a vital organ? My mom told me that it’s because he’s receiving multiple treatments that are attacking his immune system, and that clots are more common after treatment than during. While I took this news very hard, my mom tried to reassure me that this was a “fixable problem”.

I then asked my mom why no one thought they should tell me that my brother is in the hospital again because he has a live blood clot… her response was quite disheartening. She said “Grace, we don’t want you to worry. This is a fixable problem. Whenever there is something serious, a problem that isn’t fixable, we will let you know,”. It took me a minute to process what my mom had just said. I understood that my brother didn’t want me worrying about him while I was at school, and my mom probably didn’t mean anything by her explanation. But all I heard was the second half, in which I was told I would be notified when things get bad. It seemed to me that now, for maybe the first time on this journey, my mom was acknowledging that things would in fact get worse.

This past weekend, I journeyed home for the first time since coming to school. My parents were ecstatic, and both told me that my brother was actually very excited as well. When my mom picked me up on Friday afternoon, I customarily asked how Ryan was doing. She said he was doing well, and had even asked if we would all be going out to eat together when I come home. Though this might not seem like a big deal, it really was. Though he won’t come out and say it, this meant my brother was excited to see me – he had even told our mother that he was glad I was coming home on a weekend he hadn’t gotten treatment, because he’d actually be able to talk to me. This made going home seem that much better, because now I appeared to be able to boost my brother’s morale, and my own all in in one.

My brother receives four treatments every other Tuesday, two of which include chemotherapy and immunotherapy. Not surprisingly, due to the extent of these treatments, Ryan doesn’t move far from the couch in our living room afterwards. But because his treatment was last week, he’s feeling better now, thanks to the week and a half grace period. While this makes my weekly update a little difficult, I would much rather have to tell a previous story than continue to rant about how poorly he is feeling. This being said, this week I’ve decided to flashback and tell the story of how his diagnosis came to be.

In October of 2017, my brother was a student at Penn State Altoona. He was in his sophomore year of college, and had transferred to a Penn State branch after his roommates at the University of Delaware complicated his freshman year by deciding to sell LSD out of their suite’s shared bathroom. No, sadly I’m not kidding, and no, I did not send an application to the home of the Blue Hens.

While my brother was at Penn State Altoona, there was one day that he was home sick from classes because he couldn’t keep any food down. He assumed it was the flu, so wrote his illness off and didn’t seek medical attention. Lucky for him, his roommates doubled as his guardian angels, and they took a begrudging Ryan to the Urgent Care near campus. Shortly after, my parents and I received a phone call to our home from Ryan, freaking out because the doctors said they needed to take out his appendix immediately.

As I’ve briefly mentioned in one of my earlier posts, my brother also has Asperger’s, and one of the characteristics of this form of Autism is the hatred of sensory stimulation. An example would be going under for a surgery, and to make it worse, going under for a surgery by yourself. However, my family and live at least two hours from Altoona, which meant that we wouldn’t be able to get to him before they began the procedure. Nonetheless, my dad practically flew out the door and made sure he was there when my brother woke up.

What is most interesting about my brother’s surgery is the fact that once his appendix was removed from his body, the doctors looked at it, and practically said “lol wait that’s one fine appendix”. They then made the mistake of telling Ryan that they had just put him through this incredibly stressful ordeal for absolutely nothing. It took hours of convincing to get Ryan to allow the doctors to run more tests, but they then concluded that instead of appendicitis, he had colitis. While my brother no longer trusted a single word they said, he took the medication and came home.

After finishing the prescription antibiotic for colitis, Ryan still wasn’t feeling any better, and wound up in the emergency room yet again due to extreme pain and the inability to even keep water down. This time, the doctors said they think he has Crohn’s disease, but that a colonoscopy was needed to obtain a biopsy to be entirely sure. Not surprisingly, while he felt absolutely terrible, my brother didn’t want to hear this. He was stubborn, and had now been misdiagnosed twice. On top of that, I’m not sure any 21-year-old guy with autism would willingly let the doctors stick something up their butt.

The doctor that day looked at my brother and said to him, “Okay, that’s fine if you don’t want to do it. But it’s no longer a matter of if you come back, but when you do. And when you do, we’re going to have to do the colonoscopy,”. The doctor was right of course, and about a week later my brother was getting a colonoscopy in the emergency room. However, he had now been misdiagnosed a third time.

On January 5th, 2018, the biopsy results came back. But instead of showing Crohn’s disease, Ryan was diagnosed with Mucosa Adenocarcinoma of his colon. Sadly, this diagnosis was right.

Right before I left for college, my brother spent a week in the Penn State Hershey hospital for unmanageable pain. At that point, I was still working at Rite Aid, so I kept calling myself a single mom as a joke. I would get up, take care of my dog, go to work, take care of my dog on my lunch or dinner break, go back to work, go home, and then sleep in my mom’s bed to help my dog. I thought it was bad then, but at home I could at least see my parents when they came home to shower while they were switching shifts at the hospital.

However, this past week, my brother ended up in the hospital again. If I thought Ryan being in the hospital at home was bad, I had no idea about how difficult it would be if he was hospitalized while I was up at school.

What made me the most upset was that my parents didn’t tell me. The one day while I was between classes, I thought it would be a good idea to give my mom a call. When I asked her what she was up to she said, “Oh, well, I’m on my way home… Ryan is in the hospital again,”.

Immediately I was a whirlwind of emotions. Half of me was concerned, and the other half was angry that no one told me. I understood, especially because my brother told me when he was diagnosed that all he wanted me to do was to keep going no matter what happened with him. However, this was something I struggled with constantly. Though my brother always struggled with having a relationship with me due to his Asperger’s, I always felt very protective over him, despite being younger. He similarly is protective over me, which is why I’m not often told things about his conditions and treatments. My parents and I fight over this constantly, because I want to be able to help; however, the best way for me to help is to continue acting normal.

So, instead of getting angry with my mom, I talked to her about how school was going to distract her from what was happening with Ryan, and to comfort her about me being away from home. Though I had gotten used to acting like I was fine and unbothered by my brother’s condition, as soon as I hung up the phone I began crying. After allowing myself to feel sad for a moment, I got back up and started doing my homework, because I knew that’s what Ryan would want me to do.