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Avery’s Adventures

  January 22, 2019

Avery’s Adventures and Accomplishments Part II

Part I can be found below.

Five years. It has been five years since Avery was first diagnosed with her unfriendly brain tumour, the Juvenile Pilocytic Astrocytoma (JPA). What has been happening since this diagnosis?

Well, first, she was able to meet her idol! It was July 9, 2014, that Lady Gaga saw her story, Avery became a guest of her show and did a meet and greet with her after. Let me tell you, what an experience! She upgraded the seats too so that Avery could at least see less blurry-like. The dancers spoiled her as they kept going to her and giving her costume jewelry that they were wearing on stage. Those who were in the piano bar area knew Avery’s story and they kept saying how brave and how proud they were of her and it was awesome to meet her. Then after the show, waiting for Lady Gaga to come into the room, she entered with such grace, and I was star-struck. Why? Once she put her dog on the ground, the first person she asked for was Avery!! Avery!!! Avery put her hand up, and squeezed her and said, “Social media sometimes can do amazing things!” I was crying. I was shocked that I was in the same room with her. When it came to the one-on-ones, she spent 45 mins with Avery, talking to her about being bullied, and how it was not fair that she was in that situation and how she should be able to stand up for herself and that no one should ever pick on her for something that she cannot control. It was an incredible evening and Avery will never forget that moment. Neither will I.

Grade school was over and it was time for high school. It was in the summer of 2016 that we learned Avery has another tumour growing. Now we have two tumours. The first one that the doctor was able to remove 70% of, and now a neighbour. We do not know the make up of this tumour. We have been doing MRIs every 3 months, and now every 6 months. The funny thing with these tumours, is that one will shrink and one will grow, and then the tumours would switch with the shrinking and growing. The second one is still a bit small and surgery at this point would not help, since the brain is grey and so is the tumour. We are to wait for it to get to a certain size so that the doctor will finally be able to go in and remove both at the same time.

In high school, she was treated differently. At her old school, there were many issues with accommodating Avery so that she would be successful. The new school wanted to help, but unfortunately, were not that helpful. While she was attending this school, there was an opportunity for her to attend a band camp in the summertime and that they would pay some of the cost. This was a life-changing week for her.

Avery leaving for campThe camp was held at W. Ross MacDonald which is a school for the blind/deaf. Since Avery’s eyesight has not come back with the removal of partial first tumour, she was qualified to go. Here, she was among people who were like her, visually impaired. After a week of being there, she was ready to go there and further her academic career there. She told us all the positives that were there for her and since this school is 3 hours away from home, we had to carefully consider this. But when your child looks at you at says, “I will be with people who are just like me”, how do you say no? You cannot. As parents, having seen her struggle with other kids in the school who did not understand what she is going through, you know that this will be a good decision, and while she is away, you miss her like crazy, but you know that this is going to be good for her.

So here we are now. She is attending a new school that has brought her many new opportunities in her life, and she is able to do things that the other high school could not offer her. While she is still struggling with a few things, in time, things will get easier. She is opening up a bit more about her brain tumours and she is now no longer denying the fact that she does have a vision problem, whereas before, she tried to disguise it for so long. She has become stronger than I could have ever imagined, and she is well on her way to do great things. She is on her way to setting many accomplishments and she is definitely going to experience many adventures.

If it was not for Brain Tumour Foundation of Canada, I think that our family would have been lost. We did not know where or who to turn to or get the information that we needed to pull ourselves together. It has been such an honour to give back to them and so grateful that they have always been here for us when needed to vent or celebrate a milestone.

As I stated before, the eyes are the windows to the soul and she has a lot of soul to share.

Part I

On a hot day in July, my husband and I were preparing for the birth of our daughter. During the pregnancy we had the genetic testing done, and was forewarned that they create a lot of false positives. But when we got the call that the test came back positive for Down Syndrome, it definitely felt that is was affirmed. Then the testing of the amnio came back and the baby was fine! Hallelujah! One obstacle knocked down. I was curious as to what the sex was because we already had a son, and after learning that it was a girl and keeping it a secret from my husband for five months was very difficult. But the 15th day, we welcome our beautiful little girl, Avery.

Immediately, she was the star in her daddy’s eyes! They say that a bond between father and daughter is something strong, I immediately saw that with them. It was awesome. With the previous test results, we were happy to see that she was a bright-eyed, healthy, bouncing, energetic life, and she completed our family.

Growing up, of course, as a parent, our children are always the smartest, cutest children in the world. She was always wanting to learn things. She was and still is very creative. And unlike your typical girl, she is a tomboy. Football is her favourite pastime. She does not like Barbies, or anything doll related. She is a rough and tough tumble girl but yet knows how to use her cuteness to her advantage.

When she was around 8, she would complain of headaches. In the beginning, we thought that maybe she was getting them from school when she would play sports in the gym. Sometimes those lights give me headaches, so my husband and I just assumed that it was that. I also get migraines, so maybe it was that. We took her to our family doctor and he said that it was childhood stress. Which seemed somewhat odd to us, because really, what child has a ton of stress at the age of eight.

She would get them maybe once a month or so. During the summertime, when it was hot and we were bbq-ing, she would get sick. There would be no mention of a headache, just suddenly, she would vomit. But then felt better. So we took her again to the doctor, and he said to us, that it was greasy food and she should lay off of the sauce we were using. We thought, well, he may be right. So, we let it alone.

Last year, she started to complain about her neck hurting. She is a weird sleeper so we thought that she just slept funny or she did something at school that may have strained her neck a little bit. We would use a heating pad on very low heat, and that made it feel a bit better. There was a stretch of time when her neck hurt for two weeks and again, I assumed that it was just kids being kids and doing things that adults could probably not do at all now. She started to walk and became more clumsy. She is 10 years old now, and well, I remember when I was 10, I was all two-left feet. Tripping over things, dropping things. I thought it was just a stage.

Her headaches became more frequent. She would come home from school and sleep for two to three hours. She would miss dinner. Have a snack and then off to bed again. With each every headache, the vomiting also became frequent. Then, there was one night in November of 2013 that I became really concerned about her. It was a Friday night, November 15, 2013, and we were walking to the Santa Claus parade that was about to start. I noticed that she walked crooked. There was no straight line. I have explained to people that she looked like she had just come back from Mexico where she binged on tequila for the whole trip.

As we were walking, there was a gentleman coming towards us in a reflective jacket, and she could not see him. We watched the parade, and as she was getting up from sitting on the curb, she fell on her head. This is what really alarmed me. I thought that I better call on Monday morning to make her an eye appointment. I thought that her vision was really bad and all that she would need is glasses.

First thing Monday morning, we are able to get in and see the optometrist. They did a field vision test, and then asked her if she was alright if she missed the rest of the day and of course it was a resounding yes! So, they inserted some eye drops that would give them a clearer picture of her eye. After this was done, the doctor had told us that there was extensive nerve damage in her right eye and he could not understand why the eye that has the damage has the lesser of prescription. He then made an appointment with an ophthalmologist in our town.

Two days later we are in his office, and the same testing is done, again. Then we wait. He comes in and looks at the eyes and says to me, “It is not good.” And left it at that. Of course, I start to panic and think the worse. His nurse comes in and says that we need to get her to Urgent Care Neurology in London and they will call with an appointment. This was on a Thursday. And of course, with it being left as it was, immediately I felt that it was something very serious. But tried to keep my mind at ease saying that we do not know what it is, so try not to panic about something that we don’t know.

Urgent Neurological Care was unavailable to us because she is a child. We were told to go to Children’s Hospital through the emergency department and see someone in the pediatric department that happened on December 2, 2013. We make our one hour trek to the hospital and registered and immediately we are called back. Now, I know that when people have been waiting to see a physician (especially in the ER) and other who just sat down go in immediately, get a little upset. But with the swiftness of her being seen, was another red flag that we are dealing with something so much more than bad eyesight and headaches.

I wish that I could remember the name of the doctor that first saw Avery. She was very thorough, explained everything to us and what needed to be done. After she had tested her coordination, she said that she would like to send her for a CT scan. Awesome! As we waited for her to have that test run, my husband and her were discussing where we were going to eat dinner and if there will be some shopping done. Finally, the test is done and then we wait for the results. And it was very quick. There was something that they had noticed at the base of her cerebellum, and as soon as I heard that word, my mind screamed tumour. But they were unclear of the size and needed to have an MRI done. They were not sure if they could get her in that night, so maybe it would be the next day and suddenly we were planning on staying in London that night. It was still up in the air. The doctor comes back to see us and informs us that there will be a resident neurologist coming in to see Avery and that the MRI will done that same day. My husband goes in with her for this one. He wanted to make sure that it was his face that she would see when she was done. She was also fortunate enough to watch a movie while having the test done. She chose Ice Age.

And then we wait.

Finally, we are introduced to an angel, her doctor. First she discussed with my husband and I, the findings. There is a tumour that is at the base of her cerebellum and it is quite large. I believe I heard ‘golf ball’ size and my husband heard ‘tennis ball’ size. Regardless of what we heard, we both heard tumour. The tumour was large enough that it was not allowing the fluid in the brain to move around and she had hydrocephalus and this is what was causing her to be off-balance, eyesight, just the little things that one would brush off as growing up, was an actual medical condition. The doctor explained to us all of the repercussions that could happen in surgery. Stroke, possible loss of speech, she may lose a lot of blood and need a transfusion. But, if surgery was not done, and if we waited a week longer to see someone, she would of been in a coma and probably would not make it. As a parent, that is the absolute most devastating news that anyone can hear. We asked when the surgery would happen and she was not sure if it would of been that same night, so maybe the next day. We were told at 5 o’clock that she was booked for surgery at seven thirty that very night. We went from arguing where we were going to eat dinner, to having our daughter be sent off to surgery.

She was very scared but so, very brave! I laid in the bed with her until she was in the operating room. My ‘sidekick’ was not going to be by my side and all I could do was summon up the courage to be strong her. She did have her weak moments. As we were sitting there and just talking, she looked at me and said “This is my last Christmas with you.” As I write this now, I still tear up. How can a 10 year even think of something to say like that? I assured her that she will be okay because I was not going to be making Christmas dinner for everyone all the time. My heart was shattered into billions of pieces when she said that. I wanted to make sure that I was the last face to see and one of the first when she came out.

Seven-thirty came and off she went. One hour goes by. Then another and another, etc. Finally, at twelve-thirty, the doctor came in and said that the surgery was a success!!! During those five hours I cried and cried and cried that I did not think that anyone of us had tears left, but we did! She explained to us that her tumour was JPA (Juvenile Pilocytic Astrocytoma). Because of the size, she felt it necessary to only remove 70% of it because if she took the whole tumour, then there would be a large space which she did not want. But everything throughout the surgery went very well. And finally, we were able to see her. I squeezed the doctor so hard that I thought I broke some bones, but I know that I definitely left some tear stains on her shirt. We thanked her for saving our little girl’s life.

I blamed myself for not picking up on any of her symptoms. I am a person who is in school and I am home with both children all day, every day. Why did I not see this sooner? When she first complained of headaches, I should of asked for more testing to be done. Why did I not take her to get her eyes checked sooner. Why, why, why. I still place some blame upon myself. I felt horrible. If we lost her, it would of been my fault, and that guilt would of eaten me alive. I am still blaming myself, but coming to understand the fact that, I did something. I called the eye doctor, I made the appointment and he took it from there.

Seeing her hooked up to all of the machines and watching and listening for her to respond to some questions and looking at me and knowing that I was there, brought more tears. And now we were on the road to recovery. They say a hospital stay for her type of surgery was 10 -14 days. She was home in SIX! I know that every child is different, but, we felt very lucky that she was doing well. We just hoped that there would be no set backs. She was up and walking (assisted) and going to the bathroom. She had her sense of humour back, because she is a very witty girl. She did not lose her speech. She was determined to get better and she worked very hard.

Finally, it was time to come home. Never having to deal with head trauma, I was worried. I wanted to make sure that we were doing the right things at home because the hospital is an hour away that having no one in the home, like they are readily at the hospital, I wanted to do the best I could. That leads me up to today, January 23, 2014.

Four weeks post-op we travel to London for a check-up and to find out the biopsy. NO CANCER! Finally, I can breathe. But still wondering about the treatment, and the doctor thought that it was best to not have chemotherapy done and that the surgery, for now, is good enough. Her balance is one hundred percent better, her coordination is amazing (of course with little stumbles) but not like before. The only thing is that her eye sight has gotten worse but I was told that because it still being a new surgery, may get better in time. She is back to school as of last week. Only half days, but she is there. It is amazing that she is doing this only five weeks now, post-op. She does not have to go every day if she is not feeling well. I told her that she cannot go full days yet because it will be too much for her. She however does not like the fact that she cannot play football or even participate in gym class, she does understand that it is for precautionary reasons. Baby steps. Every baby step is another obstacle that she has knocked down and soon those big walls will be ready for her to demolish.

I know that not all families are lucky enough to experience what we have. I understand that some results are truly heartbreaking, but please know, and I do know this now from experience, there are many resources that are available for those affected by tumours. I received the Pediatric Brain Tumour Handbook, and without that, I would of been lost. It is so beneficial for everyone to have so that one can understand what it occurring and that they are not alone.

Today, Avery is a whole new Avery. I encourage her to rest and take things slow. I explained to her that her surgery was like a computer…..if a computer gets a really bad virus, and you have to start all of the programmes all over again just to get rid of the virus, is like how they removed the tumour. A sort of reboot if you will. We hoped that she would be home for Christmas and she was. She is our Christmas miracle saved by the guiding hands of an amazing physician and resident neurologist. Those women will forever be in our hearts for making sure that they did the best for her. The eye doctor as well is also a saviour.

We will continue to have her checked up. These checkup appointments will be blessings and never again will I ever, second guess a child who complains of headaches. The silver lining to this as well is that, where my husband works, those with small children, will know take them for eye exams. They do not want the surprise that we did. Because it happened so fast, we had no time to sit around and think of all of the negative things that could of happened. We were in the here-in-now moment and just hoped for the best. Prayer circles were formed, positive energy, love, light were all sent our way. There were many people routing for her, but we were of course, her biggest cheerleaders.

They say that the eyes are the window into the soul. In this case, her eyes were the window to saving her life.