I always felt like my life was so perfect, so amazing, that at some point it would all come crashing down. My husband is an amazing father, partner, and provider. My children are loving and companionate, and just want to make everyone else happy. I feel like I won the lottery. I always had this feeling that my children are so perfect, that I’d lose one.
So when Lily started having seizures in March of 2016, I was terrified. The doctors couldn’t figure out what was causing it and weren’t interested in investigating further. I had to bring her into Emergency 3 times in a week to get them to take me seriously. We finally saw a pediatric neurologist, who then sent us for an EEG. Nothing showed up, but I asked to have another one done anyways. Still nothing on the second one. Then she started taking medication and the seizures stopped. We all hoped that it was a random type of seizure that children sometimes just grow out of.
Then in August of this year, Lily started having hand tremors. At first I thought it was because of her anxiety or her ADHD. Maybe she was just really excited and a one time thing. Then I noticed it again, and again a few days later. It started to become constant to the point where she had a hard time using cutlery because her hands were shaking so much that nothing got to her mouth. She started using her hands to eat because it was the only way she could eat without us spoon feeding her. She so badly wanted to stay independent, but was starting to realize that that was becoming increasingly difficult. Then one day she came to us crying saying that she couldn’t put beads on a string or color in the lines, let alone write her name without it looking like an ECG monitor.
Then it became even worse😔 She started getting headaches everyday. They were so severe that she would cry from the pain and would be inconsolable. These headaches would be accompanied with nausea and sometimes vomiting. She missed half of her first day of school because of this. She was taking gravol and Tylenol daily. Again, we attributed it to her anxiety.
Her first few weeks of school were alright, but her anxiety was getting way too out of hand. No 5 year old should have to be put through that type of stress on top of everything else(ADHD, hand tremors, several medications daily), so I called her doctors. The neurologist and pediatrician referred me to the school’s occupational therapist. Then after a few days I heard back from the OT, who told me there was essentially nothing she could do because she hadn’t met with Lily yet, so there was no base line to compare it to. Back to the pediatrician who begrudgingly booked us in, but made sure to tell me that they usually don’t, and that I should realistically see our family doctor instead.
A week and a half later we saw her pediatrician. After explaining the hand tremor and having to reiterate many times that these headaches and anxiety as well as sensory issues she’s been dealing with since she was a toddler, none of it was ok and needed to be dealt with. FINALLY she was booked in for a CT scan at Victoria General Hospital. I talked to my husband about what this may show and that we had to consider the fact that we may not hear what we want to. He wouldn’t have any of it and just wanted to be hopeful. I get it, but I needed to know our worst case scenario so that anything was a relief if it wasn’t the worst thing possible.
2 and a half weeks after seeing her pediatrician, Lily was going in for her CT. I asked my husband that morning how I’d be able to get a hold of him I had bad news. Again, he wouldn’t have any of it and just said to message him on Facebook. We got to the hospital, looked around in the gift shop, got rerouted to different departments a few times, then it was time. She went in and it was done very quickly, maybe only 5 minutes it took. We were then instructed to wait a few minutes while they tried to find a doctor to look over the images to see if they needed any more than that. I started to get a bad feeling, but tried not to go there quite yet. Then they pulled us aside into an X-Ray room to meet with a doctor. They asked if I wanted Lily to stay outside with the volunteer, then I knew it was bad news. The doctor explained that on her scan, it shows a rather large mass and that it would need to be dealt with immediately. I was escorted upstairs to the pediatric department where Lily just wanted to snuggle and play. But I was being pulled aside by nurses and doctors constantly trying to explain what was happening, where we were going to be going, who we would talk to when we got to the new hospital, if I needed help phoning people, etc. It was so much to deal with. And this whole time, I’m trying to get a hold of my husband who is working on a Navy ship. I messaged him on Facebook, emailed him, called the ship, called the padre. All I wanted was to have him with me so I didn’t have to be the only one holding it together for everything, especially Lily. < a href=”https://eatprayoils.files.wordpress.com/2017/10/img_3797.jpg”>Within a few hours of the CT being done, we were being transported to the BC Children’s hospital by helicopter. Lily was still in good spirits and I was holding it together. Trying to stay positive and just being excited about things like being in the a helicopter. When we got to Bc Children’s hospital, we were seen by several doctors. They all asked the same questions about when everything started and did the same tests with Lily. At this point she was just anxious to eat. She hadn’t been allowed to eat in the morning in case they needed to put her to sleep for the CT. Then they wanted her to fast in case they did an MRI at the new hospital. She wanted a blueberry muffin so bad and wouldn’t stop talking about it. They finally allowed her to have some food, so she ate two full trays of dinner that they had in the hallway. Two plates of macaroni and cheese and broccoli. She was starving 😅
Up until this point, all of the doctors we’d seen had told us that it was simply a cyst. They said we needed an MRI to figure out what was inside the cyst in case it was blood filled and they’d need to do a blood transfusion. But then all of the sudden, we’re being told that it is in fact a tumor and that they need the MRI to see what it’s parameters are.
We finally get admitted to a room And are settling in. Still seeing lots of new doctors to talk about what the plan would be over the next few days. We were told that she’d have an MRI the next morning and then surgery. I finally got a hold of my husband and let myself cry for the first time. I cried while I told him that the doctors ensured me that the tumor was not something that could have been prevented or something that I could have done differently. Every mother worries about every little thing she does and how it may affect her children later on. Of course my mind wandered into that darkness where I started to think that maybe if my pregnancy with her had been better, or maybe if I’d let her get more time outside for exercise, maybe if I’d done something different, MAYBE I could have stopped my baby from having to endure this. But knowing that this just happens and that it’s not my fault, definitely helped with everything we were going through.
The next morning my husband was able to take a ferry and come to stay with us. Lily was so excited that he was finally with us and that we’d be having a “mommy daddy Lily sleepover” for a few days. That day(Tuesday), she went for an EEG in the morning shortly after dad arrived, then went for her MRI. They had to put her to sleep for the MRI since it would take approximately an hour, then 30-45 minutes for putting her to sleep and waking her up. When they were bringing her back up to her room afterward, the doctors were already speaking to us about what they’d seen. It was official, it was in fact a tumor. But there was also a cyst attached to the tumor. It appeared as if the tumor had been there for a long time since her skull was very thin. Pressure on her brain had forced her skull be enlarge more and more over the years but there was only so much room. They also observed that her brain looked as if it had been growing around the tumor over time, like it had made room for it over the years. The worst part of everything was that there was a major blood vessel that the tumor was attached to. There were also several smaller blood vessels going through the tumor and leading to other parts of the brain. So any little mistake could leave her with lifelong disabilities.
The seizures would have been the first indication, but we didn’t get a CT at that time. Then the tremors and headaches and nausea would be been a good indication of a tumor, but again it took weeks and several doctors visits to finally get further testing. So by now, the tumor had really run out of room and started being quite aggressive with taking space. That would be why things had gotten progressively worse from August to October.
So now the plan was to have surgery on Wednesday. She was first in line, so it would be right at 8am if there were no emergencies. She woke up Wednesday morning and was quite upset about how she wanted a taco for breakfast. The nurses and doctors kept laughing about how angry she was about wanting a “normal taco”(soft shell) with beef and cheese. She was sitting in a wheel chair and after waiting for a while, she figured out how to make it move without her being pushed. She spent a good 10 minutes making jokes, complaining about wanting tacos, and running into her dad’s leg with the wheel chair. Then she became really impatient and starting trying to wheel herself away while exclaiming “I’m getting out of here! I’m serious!”. Then it was time. I went in with her while they got some medicine in her IV to put her to sleep. She was getting very anxious about how scary the tool looked. She was worried they were going to trick her and give her needle while she wasn’t looking, so she was thrashing a lot. I kept asking her just to hug me and relax, then finally she fell asleep and we laid her down. I rubbed her tummy for a second and said goodbye.
That day was the worst and best day of my life. We spent a little time after she went in, just looking for the Starbucks nearby. We figured we’d grab some food while we could and then we’d go back and wait. My in-laws ended up coming over from the island to stay with us for a couple days. I was glad they came to support my husband since in times like this, it’s comforting to have a parent there to reassure you that things will be ok. Once we got to the PICU(pediatric intensive care unit) waiting room, I just sat in a chair watching every person walk by. I spent about 8 hours wondering if the next person to walk toward the room would bring us the worst news possible. I was so sure that things wouldn’t work out and that she wouldn’t make it out of surgery. After having an anxiety attack for 2 hours straight, I just shut down. I couldn’t handle anything anymore. I didn’t want people talking to me or touching me, and wouldn’t talk to anyone. My husband went for lunch with his parents while I sat on the chair, watching people walk past the door.
Finally I was getting too impatient and was worried that something bad had happened. I went and asked one of the nurses if I could get a status update on her surgery. She called the OR, talked for a moment, then turned away from me, as if to make sure I couldn’t hear what she was saying or hearing. My heart stopped. Then she turned back to me and said that they were in the homestretch and that they only had maybe an hour left. Although that was much better news than I thought, it meant she was still in surgery and not quite out of the woods.
When the doctor finally came to see us, he started with “that was a really ugly tumor. It bled A LOT”, but then continued by telling us that she is awake and asking for us, that they got about 95% of the tumor, and that is went well.
… to be continued