The Beginning of Tristan’s Journey

 I’ve decided to start blogging again. I used to blog and then stopped. But in light of the recent events, I’ve decided to start again.

On Monday, January 30th Tristan had a doctors appointment for lactose intolerance symptoms. He said he had the symptoms his whole life. Poor guy, he has a seriously high pain tolerance so he doesn’t tell us anything until it’s too late. He suffers unnecessarily. So for years he would eat dairy, he said mostly it would happen with milk, and he would get stomachaches about 2 hours later. Well, he tells me about it mid-January and the earliest I could get an appointment with the doctor was January 30th. Sunday before the appointment he begs me to to miss school for the whole day. Mind you, the appointment was at 8am so really he had no reason to. He was going to the appointment for about 45 minutes and then straight back to school. But I let my kids miss school for 1-2 days a year for no reason at all except that they want to stay home so I said yes and decided this was one of those days. We got up and I looked a hot mess- no shower, sweats, and hair in a not-cute messy bun because I thought this was an in and out appointment where I could come home and get ready for work afterwards. We showed up and they called him back. They took his weight and height and then showed us to the room. Then they did the standard blood pressure, oxygen reading stuff they normally do. That’s when everything changed. The nurse asked Tristan if he was nervous for the appointment. He looked confused and said no. Then she went and got the doctor. He came in and looked at the oxygen reading and asked the same thing. He again said no. He then explain to me that Tristan’s heart rate should be at 70 and it was at 150 which meant something was very wrong. He said that we needed to go to the Children’s Medical Center ER immediately. So off we went.

Funny thing is, Tristan was fine the whole time. He was actually being funny even. He said something like “So do we need to set up another appointment about my lactose intolerance or what?” He was completely fine.

We got to the ER and they did what our doctor did and discovered the same thing. But they ran some tests. Then they had to do some scans. Honestly we’ve been to the ER before and it’s taken forever to get anything done so I thought I had some time. Vincent had met us there so I told him I was going to run home and change since I looked horrible and was embarrassed that people had to see me like that plus I had to drop off money for the bar (I had gotten someone to work my shift at the bar while we were driving to the ER). But apparently the signs that Tristan had set off alarms that alerted departments and doctors and his tests were rushed and before I could get back to the hospital, Vincent was calling me. “Babe, where are you? You have to get here quick. Oncology’s here and they have to talk to us.” My stomach dropped and I started sobbing. I luckily was about 8 minutes away but to say that I was blindsided by the news is an understatement. 

No one is prepared for a cancer prognosis. No one. It’s not like you ever think about your kid having the possibility of dying. So when Vincent said Oncology was in the room waiting on me, we were both sobbing on the phone. We didn’t know why but everyone knows Oncology is never good. Your first thought is “Why him? Why not me? I’m older, I can take it. Take me. I deserve it anyways.” It’s a rush of emotions that I do not wish on anyone. Vincent is in the hallway trying to be brave and I’m sobbing in my car like a little baby. I was not expecting it. I was expecting something dumb and minor that would make us wait in the waiting room for 9 hours but not something serious that would jump us ahead of everyone. 

I get to the hospital and I’m running to the room where Vincent said they were. True to what Vincent said, the doctors were there waiting and joking with Tristan. They then told Tristan that they were going to talk to us outside about boring grown up stuff and asked if that was okay. He shrugged and continued watching TV. We go into a conference room and they pull in a TV screen and my heart sank. I knew this was serious. They said they did scans of Tristan and they found a mass in his chest, just to the left of his heart and also a mass in his spleen. They explained that because of the specific lymph nodes that were swollen they were 100% sure this was cancer. Vincent and I lost it. But as I’m sure with anyone that’s not in the medical field, we questioned it. “How can you be sure if you haven’t tested it?” Honestly, probably because of shock I don’t remember a lot of the conversation that happened. I know we went back and forth with questioning because we couldn’t quite believe that without a biopsy they knew it was cancer. Our doctor was extremely patient and amazing. She answered each question again and again as if it were the first time she were being asked it. She said she didn’t know without a biopsy for sure which type of cancer it was but she was fairly certain it was lymphoma and it was around stage 4. To be perfectly honest I didn’t do a whole lot of talking, Vincent did. I don’t know if it was shock but I just sat there listening. Vincent then asked the million dollar question “What does Stage 4 mean? When we think Stage 4 we think…..” he couldn’t even finish it and started crying again. She then explained that kids have a higher recovery rate and if this cancer was what she thought it was there was an 85% recovery rate. This definitely helped tremendously with our panic. We calmed down quite a bit. Then she asked us how we wanted to approach it with Tristan. We said we would tell him and let her know when we’ve told him so she could tailor her talks around that. She then told us the game plan. Tristan would get a biopsy the following day to confirm the type of cancer and stage. Then once that was complete chemotherapy would begin. He would have 3 days of 4 hour treatments of chemotherapy. He would also need a PET scan (a scan of the entire body) and the Children’s Hospital in Dallas is the only one that has this machine. She said we would start Day 1 chemo in Plano then transfer to Dallas for the PET scan and finish the chemo there. 

We get back to the room and Tristan is watching TV. This part is foggy because over the last few weeks we’ve spent so much time in the hospital and probably the trauma has caused some memory loss. But after a few hours Tristan asked us when we were leaving. We then explained than they found a mass in his chest and in his spleen and that it was cancer. We held our breaths. And our brave, hilarious, oldest child’s response was “Well, I guess I’m missing more than 1 day of school.” 

Tristan has had a sense of humor throughout all this. I would say more so than normal. I don’t remember him being this funny, honestly. The next step in all of this was telling Brayden and Caleb. We decided that since Vincent and I were taking turns going home and being with Brayden and Caleb that Vincent would just tell them on his turn that night. So we FaceTime Caleb and Brayden with Tristan on the phone. They’re worried about their brother and ask what’s going on. By this time, they know he’s in the hospital and will be there for awhile but not sure why. Brayden asks “Tristan, what’s wrong with you?” And Tristan responds “Guess what guys?” Pauses while they stare at him blankly. “I got the cancer”. Vincent and I look at each other and have to stop each other from laughing. Brayden and Caleb are half-laughing but also asking “Really?” Tristan keeps telling them it’s true and then Vincent tells them that he’ll talk to them about it when he gets home in an hour. But for that brief moment of time the boys are joking about Tristan having cancer. I don’t know if that sounds bad to people but I really don’t care. I love that my son chose humor to deal with this horrible disease. And his brothers communicated right back with him the same way. For a moment, everything was normal again and we were just in a hospital and they were just at home, laughing and making fun of each other.

The first day of chemo is always the hardest. Having done 2 rounds of it now, I can confirm that. The doctors told me that between him being a teenager and the chemo drugs, I wouldn’t be able to tell a difference of which is which. But Tristan is my gentle, sweeter child. So when he was sharp, rude and impatient with me, I knew it was the drugs. It was not fun. 

The first round in the hospital was not fun. For several reasons. One, if you know me well enough you know that a majority of my family is horrible. Not in the sense that they say mean things but at their core, they’re terrible people. You can judge me however you want, and that’s fine but unless you walk in my shoes you don’t know my journey. Because of the extreme circumstances I decided to let them back in my life at the hospital. But that door shut just as quickly as it opened. I won’t go into the details on here but if you know me, you may get to hear the story of these people that I am related to by blood only. They made our stay in the hospital just that more miserable, if possible.

Hospitals are also not fun because people are constantly poking and prodding you at all hours of the night. Tristan’s hemoglobin level should be above a 7 and it was at a 4 so he had to have a blood transfusion. But during the blood transfusion, which happened during the hours of 11pm-4am, he spiked a fever of 104.5 and then dropped down to 93.5. If you didn’t know if you drop below 96, it’s just as bad as having a fever. So anytime this happens during a blood transfusion it’s bad. So they had a crap ton of people in there trying to get him cold when he was hot and then warm him up when he was cold. Needless to say no one slept during that night. 

Also, as a 1st world problem Tristan’s PS5 doesn’t connect to the Wi-Fi of the hospital. This is because for the Wi-Fi it pops up with a window you have to agree to terms of the Wi-Fi and for the PS5 it doesn’t have access to browsers so he was using our hotspot the entire hospital stay. It was high speed for 2 days and then super low speed for the rest of the time so he couldn’t play his games. We figured out this last hospital stay from a friend that we could connect to the phone line and that worked and saved us! Again, 1st world problems but problems just the same. Tristan is what I lovingly call a housecat and plays video games and then comes out and watches TV with me and Vincent every now and so for him, Wi-Fi is a big deal. Me being the Mama Bear that I am, I called IT and had them try to brainstorm on how to connect his PS5. Of course, they didn’t come up with the phone connection thenthough. But now that we know we can connect to a phone line, I think we’re good from here on out.

I will say that even though this disease has an 85% recovery rate it doesn’t stop you from thinking about that 15%. You think about it all the time. I’ll be waiting on customers at the bar and have to go in the back and have a moment to cry because I just can’t bear the thought of being the 15%. The 15% keeps you up at night. It has me sobbing in my car too and on my way home from work. There’s no guarantee that we’re the 85% so the 15% is what worries me. The worst part is not being able to have these moments with your husband. At least in the hospital we were together and could cry together. Now we are working, either he’s working at night or I am. Or we have other obligations that we are doing. We don’t have a moment to process this stuff together. It’s so important to have a partner to process this stuff with. It’s easy to try to be strong for your kids but for your partner, you don’t have to be. You get to hold each other and cry and worry about that 15% and hope and pray that God will protect your child and he will be one of the 85%. But right now, we have to work so much we don’t get to have time for that so I do it at times when it’s not convenient. I pray all day every day for my child and my family that we will get through this and be strong for it. I think we will. So far I see my family and am grateful for our family of 5 and our bonds. We have so much fun together. I think that’s what will carry us through all of this. Humor and the ability to laugh through the tears. Hug your kids and loved ones and be grateful that they are in your lives. It can all change very quickly.