Tristan left the hospital after being diagnosed with Hodgkin Lymphoma on Sunday, February 5th. He had had his 1st round of chemo and we were sent home with a calendar and tons of medications and instructions on how to flush his PICC line. (Peripherally inserted central catheter- basically an IV directly to his heart). The PICC allowed him fewer needle pricks from drawing blood and it allows them a way to send the chemo through when it's time. This was done as a medical procedure when his biopsy was done. Since the mass in his chest is too close to his vitals, it's also pushing on his heart. This makes it difficult to get the PICC line in. Tristan had to be awake during this procedure and I can't imagine how scary it was. The nurse played him the movie Ratatouille while they were doing it. He said "Mom, while the mouse was teaching the chef how to cook, they were working on my body and trying to push something into my body so I had to focus on the mouse's cooking." He said it was a little bit painful but then again he has a high pain tolerance so it was probably pretty painful. They told us afterwards that it was extremely difficult to get the line into the vein near his hear and took most of the procedure to do it. Because of his vein being so pushed by the mass towards his heart, he has to have 2 shots a day of a blood thinner.
I think the scariest thing leaving the hospital on February 5th was knowing that all his care was in our hands. We had his medications, his shots and his PICC line flushing. Plus we had to monitor his temperature and his stools. The temperature was definitely the most important thing to monitor. But for Tristan, the shots were the worse thing at first. He said he was dreading it each day. They have to be at the same time, 12 hours apart. Ours are at 8:30am and 8:30pm. He rotates between the arm with no PICC line in it, and his right and left thighs. That's another hard part- remembering where we last gave a shot. It still is a struggle. But the nurses were insistent that it has to rotate. In the hospital before we left we asked if there was anything that they could give us to make the shot not hurt as much. They gave us a spray called Pain Ease and it was a huge blessing. In the hospital, for whatever reason, when they gave these blood thinner shots (which they can't give through the PICC line) they never used this spray. Tristan dreaded 8:30 two times a day in the hospital. He said it was so painful. But when we got the spray and used it at home he said it helped soooooo much. Now he says the shots are nothing and he has no dread. In fact, the morning one he takes and then goes directly back to bed so obviously it must not be that big of a deal. I will say the biggest struggle with all these things is remembering them all. Believe me, we forgot things. Now we only truly forgot 1 shot completely but most of the time, we would forget a shot later than it was supposed to be. This is where we learned that Vincent and I are a team. If one of us forgot in the beginning the other one would yell and get mad. This can't happen. We are 1 team. If one of forgot, both of us are forgetting. We can't yell at each other. It's easy to because at this point we think everything is life or death. But it's important to remember it's not. Otherwise they wouldn't give this care to moms and dads and expect us to remember everything 100% of the time. They know we're going to forget every now and then. And honestly, it only happened in the beginning, when we were adjusting. But after yelling at each other a few times, we finally sat down and told each other we had to be a team. We couldn't be mad at each for being human. Mistakes happen. Forgiveness is what is needed, not yelling. This experience has definitely been a test on our marriage as well as our family. We're having to learn lessons quickly and apologizing even more. If anything, I hope our marriage becomes even stronger because of all this.
The PICC line flushing is another beast of its own. It's not painful to Tristan but he can feel the coldness going into his body. There's an order to the process and they even made a HUGE laminated chart that lists the supplies needed and then the instructions are there as well. The lines have to be flushed each day to prevent infection. It's literally a clear line to his heart so if anything is in those lines, it's going right to his heart and that's a horrible place to start an infection. But the flushing just has to be done once a day, with no time limit on it. I usually do it with the nighttime shot. The PICC line that Tristan has 2 lumens, which is just basically 2 ways to give and take blood/fluids. They have different colors so you know which color you've already flushed and which one you need to do next. When you do the first one, you flush with a saline syringe halfway and then try to draw back blood. This can look freaky to have blood in the syringe but it's basically a way to tell that the lumen is still working. Then a medication called Heparin in a syringe is flushed through the line. This prevents blood clots in the line. Again, we are not using his PICC line at home but we have to make sure it's clean while it's not being used.
So we get home that Sunday and our new "normal" begins. Tristan actually started playing video games again with his online friends and my mama heart was happy. I could hear him talking trash while playing and happy tears came to my eyes. Also, on a side note, for his particular cancer, he is allowed to eat ANYTHING and EVERYTHING at all times. That means if he wants Doritos 24/7 for 2 days, he can have Doritos 24/7. The doctors just want him eating. After that first round, Tristan had no side effects outside the hospital so he was eating everything in sight- particular spicy Cheetos and Chicken Noodle Soup. The doctors said he might cling to a food and just eat the heck out of it and it is definitely Chicken Noodle Soup. I make several runs to the grocery store to keep that in stock. Sometimes that's what he has for breakfast, lunch, and dinner. And I won't name names but for the mom that brought over a bag full of the healthiest of the healthiest snacks and I gently told her that we appreciated it and we would probably find someone to eat them but Tristan was craving junk food so that's what we were giving him and her response was "Is that a good idea?" I get it. Most people assume when you have cancer you should eat healthy foods but please don't assume. Maybe check with the person or parents to double check. Those healthy snacks have hardly been touched and my response to that woman was "His doctors said it was a good idea so I'm okay with it." Again, I know she meant well but please don't assume. Please reach out and ask. Or, in our case, your bag of healthy, flavorless snacks will probably go to waste. :)
6 days after we got out of the hospital was Vincent's 43rd birthday. We had nothing planned except for dinner and a cake that was graciously provided by friends of ours. We had the yummy dinner and put the candles on the cake, sang happy birthday, cut the cake and sat down to eat it. That's when our wise son said "Hey guys, you haven't checked my temperature in awhile." When we got out of the hospital I had gotten a thermometer that shoots a laser at the center of the forehead but I also had one that goes in the ear and one that sits in the mouth from the hospital. We used the forehead one and kept getting different temperatures. By cancer standards, Tristan has a fever above 100 or below 96. It read 101 at one point. So we tried the ear one and were getting 99 and 98. So then we tried the mouth one and got 101 every time. We then became chickens with our heads cut off. The doctors had told us that since we live so far away from the hospital to call the hospital and page the oncologist on call but to just get in the car and drive to the hospital regardless because he had a fever and we were going to have to come in anyway. Since we had 3 different instruments saying 3 different temps we didn't know what to do. We had the oncologist paged and then Vincent and I were running around trying to pack for the hospital and get Tristan dressed. We also knew that we needed someone to come over and watch Caleb and Brayden. So we weren't even in our car when the oncologist called back. We told him about the 3 different temps and they said that the laser pointing thermometer is a piece of junk (even though it has high reviews on Amazon!) and to always go by the mouth, if needing something definite. So we got in the car and went to the ER. We were given a card to give to the people at the ER, even at Children's Medical Center, because he has cancer and a PICC line and has to be treated differently than a normal sick kid. They rushed us back and started following the instructions on the card. They asked us about the health of the family and we told them that Brayden had been sick but been in quarantine in his room during his sickness. At the beginning of all of us, our oncologist told us that we could put Tristan in a bubble and he was still going to get sick. So they told us to try to do as much as possible but not to make our lives miserable doing it. We did quarantine Brayden but unfortunately Tristan got sick anyway. He stayed 2 nights in the hospital and they confirmed that he had a cold in his bloodstream. With his lack of immune system, this could kill him. In fact, it made his hemoglobin levels so low that he had to have a blood transfusion. Hemoglobin is a protein in your red blood cells that carries oxygen to your body's organs and tissues and transports carbon dioxide from your organs and tissues back to your lungs. Tristan's levels have to be constantly monitored and if they fall below a certain level, he has to have a blood transfusion to get them back up. Like the first time he had a blood transfusion, he got a fever of 104 and then it fell down to 93; both of which are dangerous to him. They continued it and completed it but decided he needed another one the next day. The next one went without a hitch. They gave him Benadryl before it so he was super drowsy and slept through most of it. When they finished they said his numbers looked good but they were going to keep him 1 more night to make sure he didn't go up and down in temperature. He went home that Monday knowing that in 4 days he would be back for his 3 day inpatient stay of chemo.
The one thing that started to change was Tristan's hair. It first started coming out slowly. The doctors warned us that it would. They also told us if he wanted to hang on to each and every shred of hair without shaving, he could. Or if he wanted to shave it without worrying about it falling out, he could. It's Tristan's journey so he gets to decide. So when he pointed out to me that his hair was slowly falling out I asked him what his thoughts were. "I'm not going to shave it because by the time my treatments are over, I'll still have hair." I let Vincent know that this was his viewpoint and while we both knew this was unrealistic we decided not to say anything. In truth, just like the doctors said, it would start falling out more quickly and then his views might change.
Then Friday, February 24th came and Tristan and Vincent went to the hospital to do clinic first. Clinic was where he got his PICC line dressing changed and bloodwork was collected to see where his numbers were. He has clinic every Friday because his PICC line dressing has to be changed once a week. The first 2 times he had his PICC line dressing changed, it was a horrible experience. The adhesive that binds the bandage to his line is VERY strong so getting it off is a lot of work. But I guess the first 2 nurses were lazy and in a hurry so they basically ripped it off. This stressed him out and he was dreading clinic each week. Then the 3rd clinic I took him to, we got a nurse named Megan. Bless Megan, she is amazing. She told Tristan she actually liked doing PICC dressing changes and wanted him to feel comfortable. She took her time and make sure the bandages were soaked through until they basically fell off his arm. He sighed the biggest sigh of relief when she was done and immediately I asked her if we could ask for her each time so that Tristan would not stress about this appointment. She agreed and said she works every Friday so she should be able to do it. So on Friday, February 24th, Vincent asked for Megan and sure enough she was there. Vincent agreed that she did an amazing job and was grateful that Tristan was not stressed. After the bloodwork was taken, then the wait for a bed begins. I was at the bar working so Vincent had brought his laptop to work and Tristan was on his phone, playing games and watching videos. After a couple of hours, they got the room.
By the time I got there, the chemo had started. The way the chemo works is that it starts at a certain time and goes for 3-4 hours the first day and less and less time the following 2 days. They have to wait 21 hours the next day to start the next round and the same for the third day. But that 1st day was a doozy. It was tough. I know it was tough for Tristan but it was definitely tough for me. They said they I might not be able to tell the difference between Tristan being a teenager and the chemo but Tristan is generally an extremely sweet kid. He was not that night. He was mean and saying very hurtful things. I would use the bathroom just to sit in there and cry. I was not going to cry in front of him because he had no control of his behavior. I know this but it still didn't stop it from hurting. I could do nothing right. All I wanted to do was take care of my little boy and all he wanted me to do was leave and never come back. It hurt.
Luckily, the second day, it changes pretty quickly. Whatever is in that first batch is a demon and it's not in the second or third batch, Thank God. The rest of the weekend went by quickly because we figured out how to get WIFI to Tristan's PS5 (YAY to 1st world problems!). He was able to play his games so Vincent and I were on our phones or chatting most of the time with each other. It was a relatively calming time on the 2nd and 3rd days. Well, except for sleep. There's 1 small, crappy couch that only I can fit on so I sleep there. But Vincent insisted he could sleep in the chair the first night. After 2 hours in it the first night, we found out, he could not sleep in it. Instead he made a pallet on the floor with pillows and blankets and ended up sleeping amazing. And by amazing, I mean hospital amazing. Not home amazing but for being in the hospital amazing. I had a hard time sleeping on that couch just because it's just not comfortable. Can we all agree that in a children's hospital the least they can do is get comfortable couches?? I mean, come on!
But during the hospital stay, we noticed something. Tristan's hair was falling out rapidly. I mean, his pillow was covered in hair. And his clothes were covered in hair. And we had brought him a beanie, which became covered in hair. At some point during the stay in the hospital he decided he was going to shave his head when he got out. So that Sunday when we left the hospital we went home and shaved his head and Vincent shaved his head as well, in solidarity. I have the video that I made of Vincent shaving his head since Tristan has asked not to be on social media. I have video of Tristan but I will not be posting it but keeping it for later on when he is grown up and wants to reflect on things like that.
Here’s the link to the video since it’s too large to upload:
I'd like to take a moment to thank everyone for everything that has been poured into us- meals every night, treats dropped off at the hospital, and TONS of gifts for Tristan. The money raised for us will help with medical bills and eases some of that stress so THANK YOU to everyone that has helped out. It really does make a difference. It might seem small but it makes a huge difference to a family like ours. Nothing goes unnoticed. Even the rides for Brayden to and from football practice have been a blessing. We have been surrounded by an amazing group of people, whether through our neighborhood, friends from the bar, friends in general, or friends from church. We may not have had the best luck in the family department but we did luck out to be surrounded by amazing and thoughtful people. Thank you to each and every one of you! I can see God brought these people in our lives for a reason. And please continue to pray for our family and the new struggles we face each day.
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