3rd Round of Chemo

 So the first big news is THE CANCER IS SHRINKING! We got our PET scan results back when we went in for our 3 day hospital stay on St. Paddy's day. They said that all the masses in Tristan's spleen have shrunk so much that they can barely see them on the PET scan. His biggest mass, in his chest, has shrunk quite a bit but they highly recommend radiation to make sure it doesn't come back. Luckily, since Tristan is young he can prevent some issues that may come up because of the radiation. His mass is really close to his heart so the heart tissue will be affected. They said if there are issues with the heart tissue being damaged it won't come up for 30-35 years from now. So he has to watch what he eats and make sure that he is always eating healthy. He can definitely reduce the issues that might occur by watching what he eats and staying healthy. So we have decided we will do the radiation. Now the radiation won't happen until after his last round of chemo. I thought we had 3 rounds of chemo left but last week the doctor mentioned we had 2 rounds left. I need to double check with her and confirm with her how many rounds we have left. But, regardless, we are almost done! This last round passed by quickly. It was me, Vincent and Tristan in a hospital room for 3 nights. We had the best time. We sat around joking and laughing while Tristan played video games. It's nice that these chemo days are associated with good memories instead of bad ones. I have a photo and video from our last stay- almost 2 weeks ago. 

He still hasn't had any bad reactions to the chemo- thank God! We are praying it stays that way. By all accounts, except for his bald head, he is a normal 13 year old boy that gets to stay home and do his school at home. I couldn't be more happy for him. He's handled all of this like a champ. I don't know how he does it but he's so strong. And also because of the shrinking of the mass in his chest, he got to stop his blood thinner shots! So no more shots twice a day in either his left or right thigh or his left arm. He was getting bruises from the shots and I hated having to wake him up at 8:30 in the morning to get a shot. He was so excited about the shots going away! Now all we have to do is flush his PICC lines. This takes about 3-5 minutes and I could do this in my sleep now. But we just have to do this once a day so we end up doing it at night, after dinner. But this was almost as good news as hearing that the masses have shrunk, hearing that we didn't have do shots anymore! 

We can't thank y'all enough for all the pictures of everyone wearing their Tristan shirts. They have been amazing to see. Tristan is super embarrassed but they do put a smile on his face when he sees them. It's the best, y'all! Thank you so much for the support!

You’ve Been Chosen

A dear, close friend of mine got me the book “You’ve Been Chosen” by Cynt Marshall. To be honest, coming from him, it wasn’t a book I’d think he’d pick for me to read. But it was perfect. For anyone that doesn’t know about the book, Cynt is the CEO of the Dallas Mavericks. Now I don’t know all the politics behind what’s going on with the Mavericks and why some people said they would hire a Black woman to be CEO but her books says a lot about her and her journey and how she got to where she’s at. She got diagnosed with colon cancer at 50 years old but had decades of life experiences before that. How she chose to deal with that cancer is how her mother responded to her with the news of cancer. Her mother said “This is for His glory! You have been chosen”. Without giving away the book Cynt finds a way to make her cancer a way to glorify God, rather than be sad and pessimistic. Honestly, I loved the book. I’m not saying that being sad and pessimistic about cancer isn’t natural and okay but why not see how we can pour into people’s lives with this journey? How can Tristan’s cancer affect people’s lives everywhere? Whether it being in the future with Tristan’s partner or now with someone at the hospital that we can make a difference in their life. I am now determined to make a positive impact on everyone we meet or come in contact with on this journey along the way. Tristan’s story has already touched so many people’s lives that I can’t imagine how many more lives we can touch just by intentionally trying to pour into other people. I pray that God uses Tristan and his cancer as a way to reach and touch as many people as we can along the way of his journey. 

Well, this last weekend was amazing. This blog entry will be short because I uploaded videos onto YouTube. My brother, David, his wife Becky and their kids Gideon, Addy, and Emmy came over for our Crawfish/Seafood Boil and Steak Dinner. David and Emmy don’t eat crawfish or seafood so we made the steak for them. Becky, Gideon and Addy don’t eat crawfish and seafood as often as my spoiled kids do so it was more of a tutorial than anything at first so they didn’t eat as much and ate more steak too. The videos might be boring to most people. But to me, they’re priceless. Tristan got to take off his mask because he was eating and everyone was laughing and joking. Afterwards they played a game of Egyptian Ratscrew, the card game, and it was hilarious to watch. Again, these videos are probably boring to watch for most people. But for me, I treasure the mundane. The eating and laughing of family and then card playing games afterwards all seem like a long unedited video on YouTube but for me, I will treasure it. For me, it’s a snippet of time where Tristan was Tristan. Sure he was wearing a beanie. But he was still Tristan. I have rewatched them several times. I uploaded them so feel free to watch them as well. It was a small window of normal for us last weekend and we loved every minute of it. 

The ER Visit and 2nd Round of Chemo

 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:

https://m.facebook.com/story.php?story_fbid=pfbid0qmSDzax5Fcp2V6ASKCpF3UwWkyNMh26JqDkA96jdaELdDVhs5H5fnJFXJ51xPY2kl&id=25316730&mibextid=qC1gEa

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. 

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. 

The Best Part of Being a Mom? Torturing your Husband

Every morning of a school week that I go into work is exactly the same. So much so that I can actually give you a time frame of it. Well, the early schedule just started a couple weeks ago. But literally the activities are exactly the same now as they were if you fast forward the time a little.
4:20am- my alarm starts going off. I will not lie, I hit snooze quite a bit.
5:08am- I jump in the shower
5:18am- Brayden stumbles, half-drunk, into my bathroom and will, sleep-drunk, asks me stupid questions. This is also done with a diaper on that he has decided to empty his morning dump into instead of the toilet (yes he is a 4 year old that has morning dumps before 6am)
5:22am- My amazing smelling, expensive shampoo does not cover the smell of shit
5:32am- The younger of the two dogs has decided she wants to know what's going on with all the ruckus in the bathroom this early in the morning but may or may not have forgotten to go outside the doggy door and taken a piss. Now there's piss on the bathroom rug that I will eventually step on when I get out of the shower.
5:46am- Brayden has grown tired of my fake mom answers to his dumb questions and decided it was a good time to wake his brothers up.  The brothers were obviously not happy about being woken up 10 minutes before their usual time so they appropriately hit Brayden in whatever appendix is near.
5:48am- Brayden is still screaming and crying like he's been shot in WWII and there's no chance of survival.
5:49am- Brayden decides to take matters into his own hands and gets the biggest toy he can find in the game room, goes back to the "chosen" brother's room and throws it at his head. It doesn't hit the head but does hit a part of the body.
5:50am- 2 kids are screaming and yelling as though I threatened to take away their access to YouTube. This, all the while, I am blow drying my hair and pretending that I don't have kids and that I don't hear faint screaming between different angles of the blow drying experience.
5:51am- 1 of the 2 kids screaming decides that his life is worth more than being attacked by his brother and decides to turn his brother in. This leads to the other realizing that he's about to be tattled on and tries to outrun the other to the bathroom.
5:51:30am- The kids slam open my bathroom door (no, I didn't lock it because that would be too smart) and start screaming their opening, closing, and rebuttal remarks at the same time. I take it in with such words as "Oh my goodness" and "No sir, not in this house", then I quickly ask the one in the diaper why he pooped his diaper. He apologizes and says he couldn't help it and the fight with his brother is forgotten. Now the youngest can't live with a dirty diaper any minute longer and demands a change right then.
5:53am- I am changing a dirty diaper with a towel wrapped around me and my hair half blown dry. The poop has dried on Brayden's butt so I am having to scrape it off through the baby wipe to get it to come off. He is screaming like I am torturing him.
5:54am- I take orders for breakfast. And by orders, I mean, which of the 6 cereals do you want?
5:55am- They are watching TV and too busy to answer me.
5:56am- I scream again and again and again.
5:59am- They finally tell me.
5:59:30am I pour their cereal and pull out TV trays to give it to them on (less fighting to get them to move it to the dining room table; remember I have to get ready for work too!)
6:02am- I am back in my bathroom and discover the dog pee
6:07am- Finished cleaning dog pee and finish blow drying my hair. Start my make-up.
6:17am- Fighting erupts from downstairs because they decided to play a video game instead of watching TV and Caleb has usually decided to light Tristan's house on fire in Minecraft. I wait until it sounds violent before I break concentration with my makeup.
6:19am- I hear Tristan getting hysterical as Caleb continues to laugh instead of apologize to Tristan about the burned down house. I come to the balcony where I have a perfect view of both of them and yell at them to turn it off and get their backpacks on.
6:24am- I hurriedly put on clothes for work and hopefully remember deodorant.
6:27am- I shove Lunchables into their lunchboxes and throw them into their backpacks and zip it up.
6:29am- I yell my reminder again to load into my car and to remember their back packs. I remind them that seat belts need to be on when I get in there.
6:31am- No one has listened to me and has found other things to do except get in the car: go to the bathroom, find a snack, research to find out why their pillow was missing from their bed last night, turn the TV back on and watch it, or take their shoes off and relax.
6:31:10am I lose my shit.
6:31:12am- I scream like a crazy person and tell everyone they better get in the car or I'm going to ground them for life, quite possibly cutting it short too.
6:31:56am- They look at me like I've lost my shit. But also fear kicks in and they scurry into the car as quickly as they can.
6:39am- I finally have everyone buckled in and am ready to go but can't get the freaking garage door to close. I push the remote in my car at least 38 times.
6:41am- I get out of the car and manually push the button in the garage to get it to shut, hop over the invisible laser line that will make the garage go back up again, and get back into my car. My kids are laughing hysterically at me, telling me how dumb I looked hopping over nothing.

I tell you all of this not to pity me, but to understand. Understand that my husband comes home later and listens to me say "I almost killed your children this morning, like 4 times" and his response is "If you want to switch and I'll get the kids ready in the morning, I can. It's really not that hard for me. I don't know why it's so hard for you" and I just seethe.

I seethe until it's time for him to put them to bed. Then I quietly grab my glass of wine and sit on the couch to relax and to listen for what will eventually come. Then I hear is "CALEB, WHAT IN GOD'S NAME IS WRONG WITH YOU?" or "TRISTAN GET IN YOUR BED NOW AND NO YOU CAN'T HAVE ANOTHER GLASS OF WATER" or "I WILL TAKE AWAY ANY AND ALL ELECTRONICS, SO HELP ME GOD" or even "CALEB, NO MORE QUESTIONS!". That's when I smile and just enjoy the moment........does that make me a sadist?