Christmas was quickly approaching and I was starting to feel as if this would be Tiara’s last Christmas with us. She was vomiting almost everyday, losing tons of weight and being drugged with rectal Valium every time she threw up. She seemed to be fading away before our eyes.
The team at UCLA decided to complete the testing for her to have surgery, but of course nothing happens fast in the medical world. In order for her to be approved to have brain surgery she needed a Pet Scan at UCLA, a Meg Scan at UCSF, and then the team of doctors at UCLA had discuss the results, come to an agreement and then we had to meet with the neurosurgeon and see if he would agree to do the surgery. As I am sure you can all imagine, getting all that done seemed as if it was going to take a life time and we didn’t have any time to waste. We got an appointment for the Pet Scan right after the New Year but I wasn’t convinced she was going to live long enough to complete all the tests and have the surgery.
I kept begging her doctor to admit her into UCLA and get the tests done quicker but she didn’t agree with me. I had the worst feeling in the pit of my stomach everyday when I looked at her. For the first time since her birth, I started researching SUDEP, Sudden unexplained Death in Epilepsy. I was so scared I spent hours a day searching the internet trying to find anything that could help her and yet I found nothing. All I found was confirmation that she could suddenly die of a seizure for some unexplained reason.
Christmas Eve came and she was so excited for the party, she LOVES Parties. Every Christmas Eve we all go to the 4:00 pm Children’s Mass at our church, which is crammed full of people. Immediately after it is over, we go to my parents house for appetizers, dinner and the kids get to open all their presents from my parents. Since the spoiling has continued through the generations the grand kids are beyond excited to get to Nana and Grandpa’s and open their loot. My mom lets them open everything during appetizers, all at once, and then they can play with all their new gifts the whole night. My parents even move their cars out onto the street and sweep their 3 stall garage so the grand kids can ride their new scooters, set up any big playhouse they receive, or just play ball.
This year, we decided Tiara wouldn’t be able to sit through church and my mother in law offered to babysit and then meet us at my parents at 5:00p.m.. I was really nervous to leave Tiara but I had trained my mother in law how to do the Diastat and she had been watching me do it all the time, so I thought she could handle it. I felt like I needed to go with Trinity and Tabitha to church and try and pretend our life wasn’t falling apart and their sister wasn’t dying. Lou was working and was scheduled to be home by 4:00 pm, so I knew he would be there to help his Mom if she needed it. The moment I sat down in the church pew my phone started vibrating. I picked up the call and walked outside, because it was my Mother in Law. “Tiara just threw up!”
Me: “OK, take her temperature with the ear thermometer.”
Her: “It says 96 degrees.”
Me: “OK, give her the Diastat and she should stop throwing up. If she throws up again, call me back.”
Once I got back in the pew, all of my family has already figured out what was wrong, and everyone except the little kids were sad and scared. I stare at my phone for the next 30 minutes but it didn’t vibrate. We had to arrive 45 minutes early to get a seat in church and just as church was about to start my phone vibrated again. It was Lou. “I just got home from work and Tiara has thrown up 3 more times since my Mom gave her the first dose of Diastat, what should we do?”
Me: “Crap, give her another dose but watch her closely and make sure she is still breathing. If you get worried she isn’t breathing right call 911.”
Lou: “OK, see you at the house after church.”
The next hour seemed to go so slow. All I wanted to do was run out of the church and drive home as fast as I could to Tiara and take care of her. The problem was that I was finally spending some quality time with my other girls and even though they weren’t sick, they still needed me. They needed their Mom just as much as Tiara needed me and I hated always having to chose Tiara but most of the time I didn’t feel like I had any other choice. As soon as Mass was over we raced over to my parent’s and I ran into the house looking for Lou, Tiara and his Mom but they weren’t there. I frantically called Lou and he finally picked up. “Where are you?”
Lou: “Tiara is too drugged and can’t walk, I put on her pajamas and she is laying on the couch.”
Me: “What? Lou, she has been waiting for this party all day. She has been talking about it constantly, she has to come. I will be right there.”
I told everyone I had to leave, but I would be back shortly. I got to my house in 5 minutes flat and Tiara was so happy to see me, especially when I said, “Let’s get on your party dress, we are going to Nana’s” She gave me one of her big smiles and I her dressed quickly and Lou carried her to the car. I grabbed her pink vomit bowl we now took with us everywhere, a handful of towels, all of her meds and off we went. There was no way I was going to let her miss Christmas Eve.
When I helped her into the house all the kids had already started opening their presents because they didn’t know if we would actually make it back. Tiara sat on the stairs and watched everyone. All her cousins have always been so sweet and kind to her. Each time they would open a present they would bring it over and show her and try to get her attention and see if she liked the gift. They kept trying to include her even though she was too drugged out to get excited or care.
Once everyone went out to the garage to play with all their new stuff she followed them out to play basketball on the mini hoop my parents keep for her in the garage. The problem was that she was too drugged to walk on her own, and she refused to sit down, so I had to hold her up while she tried to play, which was rather hazardous for us both. She was like an 80 pound rag doll that refused to give up and wanted to play like her cousins despite the fact that she couldn’t hold herself up. Once again, her stubborn personality kept her going. Anyone else would have been passed out long ago, but not Tiara.
Within a half hour, she started throwing up even though we had already given her 2 doses of Valium, which was the most we were allowed to give her within the prescribed time frame. Tabitha grabbed her bowl and she sat on the garage floor throwing up off and on the rest of the night. All the adults were crying periodically and I just kept thinking “ I know she won’t be here next year for Christmas.” Tabitha had taken over my photography duties and would only take pictures of Tiara and I, as I am pretty sure she felt the same as me. She wouldn’t say it, but she knew Tiara couldn’t live this way for much longer.
Christmas Day wasn’t much different except I was hosting the dinner for 25 people and I didn’t feel like doing anything but sit with Tiara and try to savor each moment I had with her. Everyone brought lots of food so I didn’t really have much to make except the desserts and everyone was helping me, so it wasn’t a big deal and for once I didn’t even care. When everyone arrived at 2:00pm I had already given her 2 doses of Valium and she was sitting on the couch with her bowl, throwing up off and on. The Valium wasn’t working anymore.
My relatives who weren’t used to the vomiting and hadn’t seen Tiara in a few months were a little nervous when they saw how horrible she looked and the mood was somber. My one aunt had to excuse herself the moment she saw Tiara, and walked straight outside and started sobbing. She was crying to my Mom and then to me. She kept saying to me ” You have got to do something more, Tiff, look at her!” “If there was something I could do, I would have already done it. All we can do is wait for her to have the tests and pray they will do the surgery and it will help.” And so I was totally helpless, scared and our family was in a state of panic.
I had watched all of my grandparents die and I knew what the process looked like and every time I looked at Tiara, I knew she was on that path, and I couldn’t get her off.