About Alice
When Alice was 10 months old, she woke up from a long nap and was not able to hold her head up straight. She could turn her head to the left and right, but it was held on a tilt. This was the second time it had happened, so we took her straight to Sick Kids Hospital. We were thinking she had an infection in her neck, we would be sent home with antibiotics and she would be fine.
After many tests Alice had a CT scan, and we were told a mass was found in her brain. The next morning an MRI confirmed a brain tumor in her cerebellum. The doctors were unsure as to the type of tumor and so we did the watch and wait protocol. Another MRI was scheduled for 2 months time. While we were waiting, I was hoping the next MRI would show it was all a mistake. There was no tumor, maybe Alice had banged her head and that is what caused the lesion? But we were not so lucky, the MRI showed the tumor had grown and so a biopsy was planned.
The ICU
Seeing Alice after her biopsy in the ICU was extremely hard. She was very pale and still had both her IV’s in. Even though I knew she was having a brain biopsy I was not mentally prepared to see her after, I do not think you can prepare for it. She was awake and crying but I was able to hold her and she went straight to sleep. We spent the night in the ICU to make sure she was doing ok.
The ICU is not an easy room to stay in. There were four other children in the room and their families as well as nurses constantly checking on everyone. Alice slept most of the night (morphine will do that to you) then we got moved into our own room on the fifth floor the next day. Alice had an ultrasound to make sure there was no internal bleeding and was monitored day and night. Two days after the surgery we were sent home. Alice was doing good and we were shown how to clean the wound and give her medicine.
An Infection
Nearly a week after the biopsy the wound had started looking red and swollen. I texted a picture of the area to one of the doctors and they asked us to return to the hospital. It looked like an infection. The doctors were concerned with the redness and the amount of fluid that was around the wound. We were straight to emergency and we waited for an MRI. The results showed enough to concern the doctors and we went back to the fifth floor.
We stayed on the fifth floor for 9 days. It was heartbreaking to have to help hold Alice down while they did more blood tests, had to put in different IV’s because the last one had a kink in it. The hardest was when I had to hold her to my chest tightly while she screamed, and they used two syringes to remove fluid from her head. I am so glad she is too little to ever remember this, I am not so lucky.
Grade two Glioma Astrocytoma
A low-grade glioma is the best we could have hoped for, so we are going to take this as a mini victory. After searching the internet, I found out that a low-grade glioma brain tumor is the most common tumors found in children. Cerebellum low-grade gliomas account for 15% to 25% of all pediatric central nervous system tumors.
Since Alice was so young the doctors are being cautious, and we were put on the watch and wait protocol. Alice would have an MRI every 3 months and during this time we need to watch her for any signs the tumor is growing.
Sick Kids Hospital
No parent willingly wants to live in a hospital, but Sick Kids really is a great hospital for children. We realized after Alice’s diagnosis that we would be spending a lot of time here, so we started getting familiar with the kid’s activities. The hospital offers a lot and has a calendar that lists them all. A few kids’ playrooms are on the forth floor and one on the ninth. There is also the library on the main floor.
When Alice was feeling well enough, we took her to the library at 11am for story and song time. Story time is filmed so that children who cannot leave their rooms can watch it on their TV. Children can even ring in and request a certain book or song.
The food menu is amazing, so many choices. Alice loved everything – I have never seen such great hospital food. The Toronto Maple Leaf’s came one day to visit the hospital. The went to all the rooms that were occupied and took photos and gave out goody bags.
More waiting
Now we have been on the watch and wait protocol for over a year, days to be exact. We go back to hospital every three months for an MRI to see if the tumor has grown or not. We get to live a normal life for two and half months then Alice has her MRI, and the worry sets in until we get the results and find out how much it has grown and if she will start treatment this time. So far it has been growing very slowly and her next MRI is in May. So, we just keep playing the waiting game. Being on the watch and wait protocol is extremely hard, but after a while a type of numbness sets in.
While we wait, we have gotten to know of many lovely programs that help families with a seriously ill child. The TinySuperheroes and Feel Better Friend programs are two that Alice loves. We have found that there are many different Facebook support groups too that really help in not feeling so alone.
If you would like to share your child’s story, please fill out the contact form below.
Do not forget to subscribe to our newsletter below to get an update when a new post is live.
2 thoughts on “About Alice”
What a brave little trooper!
Well, I think you’re all awesome! Alice is amazing, and I can’t begin to imagine how strong you have to be. You guys are always in my thoughts.
Comments are closed.