December 18, 2009 was when our world crashed. Now I've had events in my life that I thought were crashes but they turned out to be speed bumps, very small speed bumps. This was the day that our son was diagnosed with a brain tumour. Of course the doctors didn't call it that, they called it a "lesion". Then they called it a "mass", I guess they were taking baby steps. Now here comes the truth, it's a tumour. Not that we didn't already know, a room full of Doctors and med students gives it away. How about we start from the beginning.
Alexander Edwin Brown was born on the 13th of November, 2007. He sure looked perfect to us, and he was. Things continued to be perfect for the next two years. On Alexander’s second birthday he came down with the H1N1 flu. He actually handled it pretty well but in his weakened state we were able to see indications of something else lurking. Up to this point Alexander was very active, running and climbing like a little monkey. He seemed to bump into the walls a lot but we thought he was just running so fast he was out of control. Now with the effects of the flu he started walking like a drunken man. Also, he had intentional tremors in his hands. The tremors were something we hadn’t been concerned about until we saw him try to eat in a weakened state. Over the next month we went to Doctors, Physio, eating specialists etc. By the end of the month we had a bigger scarier picture. Along with the drunken walk and hand tremors he also had a slight head tilt, back muscles more developed on his left side, left handed from the age of 6 months and he had started choking on his saliva. Put all this together and we're off to the Alberta Children's Hospital to see Neurology. After many hours Neurology was convinced that we were still seeing the effects of the flu and sent us home after putting us on a 3-4 month wait list for a MRI. "Come back if he gets worse", they said. We were back on the 18th of Dec. because he was throwing up nonstop and complaining of headaches. This time there was no way we were leaving. It took some pushing but we were finally getting a CT. This brings us back to the point where the room fills with Doctors and students.
It's the not knowing that kills us. Most things in life we can figure out if we think about it long enough, and if we can figure it out we can fix it or know someone who can fix it. "IT" being anything but a brain tumour. Band aids and Tylenol are easy but what can we do about a brain tumour? Nothing. And handcuffed is how we felt when we had to hand him over and say "fix him". The silver lining is, now we know what's wrong.
Micro managing is a great way to get the Aircraft fixed the way you want but it's also a good way to lose friends. It was unfortunate that I was a micro manager at work but it was about to come in real freakin handy in the hospital. We did a lot of research and asked the doctors a lot questions. We now knew what was supposed to happen and how often it was supposed to happen and we made sure it was going to happen like clockwork. I seem to be on a bit of a rant but that's the micro managing extremely concerned parent talking. So how about we get back to the story.
Like I said before I got off track, we now had CT results and a room full of Doctors and specialists, as well as one Oncologist outside our door, but we didn't know he had come that soon until many months later. Suddenly, we moved from a 4 month wait for a MRI to 1 hour and the results from the MRI confirmed the CT results, a tumour the size of a lemon which was removed 3 days later on the 21st. If you think a watched pot takes a long time to boil you can imagine staring at the wall for 6 hours during surgery. When they brought him back to PICU after surgery, I was so glad to see him alive but my heart ripped in half to see him with a 6" incision in the back of his head. He's so small, how can this be happening to a little boy? It took about 3 weeks for him to heal because the incision kept leaking but it finally did heal. Towards the end of the 3 weeks he had to have a lot of Physio to figure out how to walk again and use his hands. One of the side effects of the surgery was mutism so he also had to learn to talk again. So we've now spent Christmas and new years in the hospital but we're finally going home.
As much as a child should never have to go through something like this, a parent should not have to look at a list of treatments and decide which protocol has the best chance of killing the cancer but will harm him the least. At this point we were told he had Medulloblastoma. A bad tumour but if you’re going to have one this is the one you want. A 95 percent survival rate sounded really good.
It's really great to have a good connection with your child. Since Nov. 13 we had spent about 5 weeks researching what could be wrong with him and about another month researching what we now know WAS wrong with him. This amount of research together with leaving work on the 18th of Dec. to spend every moment with him meant we now had an amazing connection with him and also to what was going on inside. I know people will say hindsight is 20/20 but I don't care what people say, this connection with him gave us an uneasy feeling that it was not going to turn out okay. Trust me; we never wanted to be more wrong in our whole life.
Now that we had decided on a protocol, the next step was to get a dual Broviac installed. Luckily, this was a short surgery and it was going to save him a lot of pokes in the future. Now the line is installed and we're ready to start Chemo.
I think it's important to mention at his point how brave he was. Over the 10 months that he was sick he had 2 brain surgery's, a central line in his chest, a central line in his leg, 2 EVD's in his head, a third ventricle installed, stem cells removed, countless blood draws, LP's, CT'S, MRI'S and countless other procedures. Through all this he rarely complained. He never once threw up from Chemo or Radiation. Even in the end when the Pathologist explained what the tumour had done to his brain, which was pretty horrid, all Alexander had ever done was point to the back of his head and say "owie" and then continue playing. He was my hero and looking back I realize how easy it was to be strong because he was strong. I'll continue the story now but I really needed you to know what kind of man he was. I know he was only 2 but he earned the title "man" even though we will never forget he was just a little boy.
Alexander’s protocol consisted of 6 rounds of chemo with the last 3 rounds being stem cell rescue. After the 3rd round he got a MRI. The results showed that he had a spot on his brain but they were not ready to call it a tumour. Not only was it back but now he had 5 tumours in the nerve bundle in his spine which were inoperable. WTF! Over the next 5 weeks we completed the 1st round of stem cell rescue and added 5 rounds of Intrathecal chemo which is chemo injected into his spine. At this point we got another MRI to see if it was working. Not so much. Now the tumour was definitely back and he had 8 on his spine. Obviously this was not working so we stopped the chemo completely.
The bad feeling I said we had earlier on was getting really strong now. The chemo didn't even slow the tumours down. Next step radiation.
The radiation was something that scared the hell out of us. Depending on the dose of radiation, children under three can be severely brain damaged. Unfortunately, Alexander's tumours were showing themselves to be extremely resistant to treatment. This meant we had to give him a serious dose of radiation. He received 31 doses in total, the life limit to his head and almost the same for his spine. They left a little room on his spine for pain management later on. He had to be put under for every round of radiation and it wasn't long before he started to giggle when the Propofal took effect.
31 doses of radiation and he never complained, NPO every morning and no complaints, large blisters on his head and still no complaints, burns so bad his head peeled and, you guessed it, no complaints. To this day we marvel at his strength.
Now came the long 5 week wait for yet another MRI. When we finally got the results the world did a flip flop. The radiation had done absolutely nothing. He still had the spinal tumours and the brain tumours had grown fast while on radiation which is very rare. At that point they told us they could do one more brain surgery but there was no way to get it all. Little did they know they wouldn't get very much at all.
When they opened him up they realized the tumour was not what it had appeared to be. His tumour was actually ETANTR, Embryonal tumour with abundant neuropil and true rosettes. A tumour that can mask itself and then change its cell structure to reveal its true self. No one has ever lived with this tumour past 10 months from diagnosis. Alexander was the 36th case in literature.
They gave us a couple of options to possibly extend his life a little bit but it would mean more hospital visits and that's not how we would want to live our last days so he wasn't going to either.
So now we’re waiting for him to heal from surgery. Oh wait, it's not over. He now has meningitis. Like he's not suffered enough. This would be about the 3rd of September and we had a trip planned with Children's Wish on the 10th. Alexander was a water baby and we were going to take him to Hawaii for a week. I'll let you know this; we were not going to miss this trip. If we don't go now he will never make it. So we told the Doctors, give him whatever antibiotics you can because we are leaving the Hospital at 9:00am on Thursday. At 9:00am he was in the truck with a fever and on the way to the airport. His fever was gone shortly after we got to Hawaii and he had a blast. He had a private swim with 2 dolphins for 30 minutes and we also bought and released 31 butterflies, 1 for each round of radiation. The rest of the time was spent swimming and sitting in the hot tub. I wish I had had a bookie because I could have made money asking him what he wanted to do today, every time the answer was "Hot Tub". Before we left we had a professional photo shoot.
It was sad to leave Hawaii because it meant we were going home to spend his last days. We still had some time left though so there's no time to sit around. We had made a bucket list before we left for Hawaii and we were going to try our best to complete it.
The first thing we did when we got home was go to Akisha’s birthday party. Akisha was his girlfreind and her party was at a jungle gym, what could be better.
After the party we hooked up the travel trailer and went to the Kids Cancer Camp in the mountains for a weekend. We brought along one of his best friends and camp aid, Samantha who he called ""Dam". While we were still in our campground I put Alexander on my lap and let him drive the truck pulling the trailer. Driving the truck, another thing off the bucket list.
Next, we went home and packed for Banff National Park. While in Banff he got to go on a helicopter ride over the mountains, swim in the hot springs and go on a gondola ride up the mountain. This is where we had our 2nd photo shoot.
From Banff we drove straight to Stony Plain Alberta to visit his Grandparents and have his 3rd photo shoot. A couple days later we went to West Edmonton Mall and the indoor water park. While we were there he got to go behind the scenes at the aquarium, feeding the sea turtles etc. We also took him to a pet store to play with puppies a couple days in a row. By now he was getting very tired and sleeping most of the time so we knew we were close but we had finished list. He went to bed that night and got up the next day unable to walk. I guess it's time to go home.
I always said the hardest thing to bear would be when Alexander would look at me and say, "Daddy I'm too tired" but when a child has gone through this much pain there are worse things. As we left the hospital one day he said "back home". Later that night when we were laying in the family bed he again said "back home". We said "you are home honey" but he kept repeating, "back home" so we asked him where is home and he pointed up at the ceiling and said, "back home". This was the point I had been dreading but I wasn't thinking about myself anymore and I understood where he was coming from.
We checked into the Rotary Flames House on the 11th of October. At first we had wanted to let him pass at home but they really take care of you there so it lets you concentrate on playing instead of daily chores. Facilities like this really are a God send. We spent the next 13 days playing, watching movies, reading books and anything else Alexander wanted to do. Also, during those 13 days we learnt what to expect with his condition. By this point his right eye had failed him and his hand tremors were really bad. The amazing thing was his spirit did not faulter at all. He figured out ways to tell us what he wanted using sign language or pointing etc. It was amazing to watch him figure out how to get what he needed. I'm sure glad we taught him sign language at 10 months.
On the 16th and 17th of October we left the Flames house for the afternoon to have an open house. We wanted the Flames house to be more family time so this open house was a chance for everyone to say goodbye to Alexander. To everyone’s surprise, including us and Alexander, a friend of ours who is a Fireman arranged for 2 fire trucks loaded with fireman to come to the party and give rides to everyone. In total, about 70 people showed up.
The next part is going to be hard to write but it's important to remember the last 29 hours.
At 6:00 p.m. we were finished eating supper and Alexander had been very patient until now. He had asked a few times to get out of the high chair but at one point he looked at me, raised his hands to me and said "upstairs". I took him upstairs and asked which bed he wanted. We had a bed out in front of the TV but he wanted the master bed that we slept in every night. I cuddled with him for about ten minutes until Tara came in to say good night and then we both laid with him and he went to sleep about 5 minutes later. It seemed like any other night but that was the last time we would put him to bed. About 2 hours later he had a seizure and went into a coma and never came out of it. Over the next few hours he went down to about 2 breaths a minute and we thought we would lose him that night. We held him sitting up between us in a big family hug for about a hour but he stayed with us. At that point we laid him down and his breathing evened out and became more regular. We didn't sleep all night and at 7:00 a.m. his condition hadn't changed so we decided to treat it like any other day. I started by reading him all the children's books we had with us and then we all watched Toopy and Binoo for a couple of hours. The hospice we were at has a large common area with a large fish tank, projector TV and a large bean bag mattress that he loved to lay on. We believe that even though he was in a coma, he still knew what was going on around him so we took him to the bean bag bed and spent the day there. During the day we played music, read him books, gave him a nice bath and rinsed out his mouth every 30 minutes to keep him comfortable. Marc, a musician from the hospital came by and sang to him for a hour. Alexander and Marc had played music together a few times already so it was comforting for all of us.
We spent 29 hours making him comfortable, but now looking back we realize he spent the last 26 hours making us comfortable enough to let him go. We knew for many months that his time was close and we thought we were prepared for it but he knew better. He knew we needed time to read to him and stroke his hair, time for hugs and quiet "I love you’s" and time for us to tell each other we would be okay.
We took him back to bed about 8 that night. We had just spent one of the hardest but most beautiful days ever. We would be lying if we said we hadn't cried our heart's out that day or laid on the bed writhing in anguish trying to imagine life without our “Mister Man”.
We had been warned about the "big gasp" that was going to come but it still scared the hell out of us. His breathing had got more shallow and ragged over the last few hours until it finally stopped. We lay with him and told him he had been brave long enough and he could go now. His breathing had stopped for a minute now, and then came the big gasp. As I said, we had been told about this but we had not been told it was going to happen over and over. Every time we talked to him and tried to tell him it was okay to let go he would come back. At some point we realized he was waiting for something. Earlier we had each tried leaving the room and then we tried leaving together but he wasn't ready. Finally we realized he didn't want us to see him go so we kissed him good night and went to sleep.
Because we were donating his tumour we only had a 2 hour window after he passed and for this reason we had a nurse checking on us every 30 minutes. I looked at the clock 1 last time before I went to sleep and it was 1:00 a.m. on the 23rd. We awoke at 1:05 a.m. to the nurse telling us he was almost gone. He had waited for us to go to sleep before quietly passing. At 1:09 a.m. he was gone. That was the moment our lives ended. Life will continue on a different path but life as we had known it was over.
We realize that he was not in pain when it seemed he was fighting for breath but that it was just a change in breathing patterns towards the end. This does not make us feel any better though, the most horrid thing a parent can go through is watch your child gasp for breath as he dies.
After a good bit of crying we washed his face, changed his diaper and dressed him in his favourite pyjamas. We thought it was very important to make sure he got to his final destination so after we dressed him we carried him in our arms to the hospital for the tumour removal. The next time we would see him was the cremation. At this point I will spare you the hours and days of crying.
About 1 1/2 weeks before he passed we bought a cremation container and I decorated it. I painted it "Caribbean Waters" blue and covered it with ocean theme decals. The inside was covered with his duvet cover and his pillow. On the inside of the lid I made a TV with Toopy and Binoo playing.
He seemed very peaceful the next time we saw him. We said our good byes and took him to the crematorium. We were strong for one last time and pushed the button.
We decided to have a celebration of life in keeping with the happy life he led. There were balloons, temporary tattoos, bubbles, glow bracelets and a clown named "Jumpa". We released over 200 balloons while a dear friend played the bagpipes. It was a beautiful day to celebrate a beautiful life and 130 people came to celebrate with us.
We had hoped he would make it to 3 years old but we did manage to spread his ashes in the ocean on his birthday. At the end his hair had grown back and his tumour had been removed so when his ashes were scattered he was a normal boy, tumour free.
Considering how much Alexander liked water it was only fitting that a baby sea turtle came to the surface before we scattered his ashes.