Before reading about our adventure to CHEO, make sure to read my previous post “Glasses anyone” below.
Today dreadfully arrived. I didn’t sleep well as I was wondering what the heck was going on and how fast we ended up here. How was it that I was leaving shortly to meet with a Neurosurgeon team in Ottawa?!?
It was a cloudy gloomy day. We had a lot of early morning calls from Dad who is too far away and worried sick, a nervous Bria and I was a bag of nerves. To be honest, adrenaline was in full force and I was just going with it! Bria and I were ready with an overnight bag packed just in case they wanted more testing. We were waiting for Uncle to pick us up as he was driving because I don’t think my mind would have been on the road much. We had to stop at the hospital here first to pick up her images from the MRI and her referral papers. We are on our way…
We arrived at CHEO just before lunch and we were told to go to Emergency and the Doctor will meet us there. We checked in and we waited!
Still not knowing what to expect or what was about to happen, we all felt sick!
Bria was called and we went to a room and meet with one of the ER doctors and for the first time in 23 years of checking kids eyes, we seen the swelling on Bria’s optic nerves…he was a little shocked. He called the Neurosurgeon and told him we were ready to see him.
While we waited, Bria got her IV in and bloodwork done.
We waited and in walked a jolly man with a huge smile. He introduced himself and had a chat with Bria to see what was going on. He had a look at her eyes and said there was definitely a problem but not to worry. He went to have a look at her MRI images that I brought down and got them uploaded so we can see what was happening.
He came back and had all her MRI scans on the computer and went through each and every one explaining Bria’s issues…yes issues, there were 2 and big ones at that!
Bria had developed a condition called Hydrocephalus. This is where there is a buildup of cerebrospinal fluid in the brain and it causes pressure inside the skull and can cause headaches. This all made sense because she was having headaches on the occasion. Now the question was “What was causing the Hydrocephalus?” Her doctor then went on to tell me that she had a bad guy living in her brain. We didn’t know if the bad guy was really bad but we knew he didn’t belong and we needed further testing. The first thing he needed was another MRI to get better images of this bad guy. He told us we were not going home until this issue was dealt with and we had better answers.
We are now admitted to the Children’s Oncology Unit at CHEO. Wait, what? How is this possible? How on earth did we get here without any idea or clue to what was happening? No parent ever wants to watch their child get wheeled on an hospital bed to a cancer unit. Do they think she has cancer? Is it just to get us a bed? Is it just to get testing done and go home? Left in a cloud of darkness with so many unanswered questions.
Here we go…Oncology Unit for the weekend. Trying to update everyone as we go and keeping Dad in the loop as well. We got settled and ate supper as we were starving at this point.
We still didn’t know what and when things were going to happen but here we are with one change of clothes, pjs and a toothbrush. The first thing was to get Maison and the dog taken care of and to get more clothes packed and sent down as we were going to run out real fast!
The playroom on the unit brought Bria some painting to keep her busy and of course she had some Facetiming to do!
The night staff arrived and Bria met her nurse for the night. Nelson was amazing, they quickly became good friends.
I still could not believe that I was at the hospital with my healthy Bria!
My bed for the night
We had a decent sleep, I think we were just exhausted from everything that happened in the last few days. Now what was happening today? More waiting? More test?
Bria’s day nurse, Meghan arrived and we were blown away by how incredible everyone is around here. She told us we were booked in for an MRI at 11am and also an eye exam at the Ottawa General Hospital at 3pm. There is a tunnel that connects the 2 hospitals so we didn’t have to go outside to get there.
Breakfast arrived and we got ready for the day of testing!
Time for a little painting before her MRI.
Meghan arrived to take us down to MRI. She told us we were booked in for 4 hours but hopefully it will be done in 3. What in the world?? 4 hours in an MRI machine, how was she going to survive?
We arrived and she had to sign her consent and pick out a movie. They had a big selection of movies and she picked the live action Beauty and the Beast.
Here we go…
The MRI was going to be long because they had to get better pictures of what was happening and also do road mapping just in case she needed surgery in the future.
Just over 3 hours, we are DONE! They allowed me to go in with her and I don’t know how I survived sitting still for that long. The room is freezing and I had to wear big headphones to cancel out the noise as those machines are loud! Bria had her movies and did way better than I would have done…they said she was a champ!! She is hoping to never have to do that again!
Back to the room we go to grab lunch because we have to head over to her eye appointment shortly.
When we got back, this was waiting for her. It was from our Surrogacy family, she always has the best timing as we were so hungry! We dove in right away, it was simply delicious!
Our Porter arrived to take us to the other hospital. It’s a good thing he did because I would be still looking! 15 mins later, we arrived!
The Neurosurgeon wanted a closer look at Bria’s eyes and to make sure there was no other issues.
All went well and no other issues noted…phew!
Today was a long and tiring day. We have to wait for results of the MRI and it may take until Monday.
Carson & Jana arrived after supper with our clothes and everything we needed, we are hoping its only a few more days.
Sunday morning arrived and I’m hoping today we will have some answers on the MRI.
Just after we were showered and done breakfast, her doctor came to visit her. He always makes her laugh and feel comfortable. He asked to speak privately with me and at that moment my gut near fell to the floor. I knew something was wrong. I felt like I was in a scene of Grey’s Anatomy when Dr. Sheppard delivers news to parents.
He took me out to the conference room and got Bria’s newest MRI images on the screen. He explained how it was now confirmed that she has 2 major issues. How is it that Kerry is so far away and I need him more than ever right now? He told me that the bad guy was a tumor. Bria has a brain tumor, I thought I was in a nightmare. He didn’t know how bad the tumor is and he was waiting on the Radiologist to determine if a biopsy was needed. The second issue was that the tumor was blocking the flow of her cerebral spinal fluid and that is the cause of the hydrocephalus. Two major issues and both needed dealing with asap. He told me he wanted to hand her case over to the Chief of Neurosurgery as it was a little more complicated than we hoped for. I agreed because I wanted Bria in the best hands possible. He had put in a request for an OR for mid week as she was needing surgery sooner than later.
First, I had to go back to our room and tell Bria she has a brain tumor and needs brain surgery in a few days. How could I do this? She was smiling and laughing when I left the room thinking we are soon getting out of here and some simple meds were going to fix her.
She handled the news like a pro. I still don’t know how strong this child is but she should be a role model to everyone. She said “it’s a good thing we are in a good hospital and they can fix me.” And that was that…smiling and hoping her company would arrive soon.
Next, I had to call Kerry with the news. The Doctor said that we will have more confirmed timings on Monday or Tuesday but he said to tell Dad to be on standby because he will want to be home for her surgery. Being on the other side of the world at times like this isn’t easy on anyone. I still feel like I’m going to wake up at any moment because this could never be true.
Bria’s visitor arrived and she was so happy! It kept her busy while I let everyone know what was about to happen to Miss Bria!
Later that afternoon, the Hughes family came to visit us and brought Bria some treats.
And of course she found a stuffed animal in the gift shop that she “needed!” But we settled on 2 smaller ones instead!
Another long day. Mentally exhausting to say the least. Bria really enjoyed her night nurse May, who was born in December haha! Bria thought that was pretty cute! Bria did a neuro check on May, she wanted to be the nurse for a change.
Bria was making the place feel like home
Monday morning arrived and Bria was so excited to get Starbucks hot chocolate on her breakfast tray. She said it was a 5 star hospital haha!
Bria’s new Doctor arrived this morning with his team. He is now her main surgeon and feels very confident in her surgery. Bria felt an instant bond with him and we both put our trust in him! I mean what other option did we even have at this point? This guy was the best at CHEO so we will take it!
He is gone to make a plan and coming back shortly with it.
He arrived and as of now Bria is having surgery on Wednesday morning. She will be having 3 surgeries in 1. The first is to biopsy the tumor if he can get access to it, the second is to make a new hole inside her brain so the brain fluid can circulate properly and the third is to place a shunt for a back up to drain brain fluid if we need it later down the road.
I have to call Kerry and tell him to get home asap. We are down to hours and lucky if he will even make it in time for Wednesday morning. I have to make arrangements for someone to come and stay with Maison as we aren’t going home anytime soon. I don’t even have time to process what is happening!
Bria went to the playroom with Carson and met a little friend that has gone through the same as we are going through right now. She gave Bria a boost of confidence knowing she is doing so well.
One of Bria’s favorite nurses was back and she couldn’t be happier.
Remember earlier I had mentioned about the dog she wanted at the gift shop? She brought Uncle to show him and guess what happen?!? We also found Walt Disney on our way!
After supper, we went to the Ronald McDonald Family room.
This is where I showered every day, did our laundry and sometimes went to hang out for a change in scenery. They have a small kitchen, coffee, tea, etc. Tv’s and couches to curl up on. It was truly a great place!!
Off we go back to our room to get settled for the night. Tomorrow is a big and busy day. Aunt Julie was flying in to come stay with Maison and Daddy was coming home in the night!
Our nice night nurse Emile, got me a new bed for the night. I was soooo excited!
Bria don’t seem to be too concerned about having surgery in a few days!
We were up and ready to start the day! Getting things in order for her big surgery tomorrow. We had some pre-op things on the schedule and her doctor was in with her to explain what was going to happen.
First to arrive today was Aunt Julie!
Of course she brought treats!
Flowers arrived from Nanny C
And now we are moving to the surgical unit! This is really happening! The OR is booked for 8:30am tomorrow for 8-10 hours.
We had a few visitors after our move. Kelly came down to pick Julie up to take her back home. Thank goodness for amazing people!
This is Bria’s incredible Doctor! He came to visit her again before he went home to see if she had any questions. He showed her the tumor on her scans and he showed her where he was going to be removing part of her skull. She didn’t seem to mind any of it because she knew it had to be done! Once he was done with Bria, I had to go sign all the consent forms for her surgery. I am sure I could make people vomit if I read out the risks we were facing. We are all signed and ready!
One of my friends came by and brought us supper. Bria picked and wanted Subway. She was getting tired of hospital food and so was I! It was a lovely visit and just what we needed! The kids did a silly picture hehe!
Carson and Jana came down after supper and is staying the night. I think Carson knows how to get here now after all the trips he made this past week! He was filling in for Kerry until he got back. Jana got Bria’s nail polish off for the OR.
Finally…Daddy is in the building!!!
He made it just in time!
Daddy’s work sent Mickey & Minnie…she loved them!!
This is what happens when Bria and I sleep in a hospital bed together!
Tomorrow is the BIG DAY! I have no idea how we survived this past week but here we are! Ready to tackle the beast and get our girl on the road to recovery!