This is probably my longest post so far................... just so you know what you're getting into:
Five years ago today Cole had his MRI. The MRI that told us he had a brain tumor. It started out as just a test, just an MRI. Who knew what we would find out? We had already spent some time on the computer looking for answers. If you Google chronic vomiting you gets lots of stuff - you get brain tumor. But, when it's your child with the chronic vomiting, you ignore the brain tumor part. You don't even discuss it with your husband. You both mention in like its the most insane thing ever and then you move on. That's what we did.
So, we head to USA Hospital for an MRI. Cole had not had anything to eat or drink for hours and hours. Poor thing. He was playing in the teeny tiny waiting area while I filled out paper work and I think Jason paced. He's a pacer! So, the guy in charge of the MRI's comes in to explain what we're going to do and talks about how we can be in the room with him, although it's loud. (Like that would keep me out) He told us that from time to time they have to run contrast, to get a better picture. He said we probably wouldn't have to worry about that, its just if they see something really, but had a sign the consent form anyway. No biggie, right? That's what we thought, too.
They give Cole something to drink to sedate him. It wasn't working. I was rocking him and singing to him, whatever I could do to get him calm and sleepy. Nothing worked. His MRI time was skipped for another patient that was ready to go while Cole was still wide awake!! It took so long to get him to sleep. It was miserable. Finally he dozed off and they got everything going. We're in the MRI room with him while the machine is just buzzing away. I had a notebook with me and was attempting to study for a test that I had to take the next day. Let's just say, I wasn't really accomplishing anything. Jason was pacing, again. The tech came in and said something about how they were just running some contrast through his IV, no big deal. WHAT??? No big deal? The guy just told us they NEVER have to do that. My heart sank. The tech couldn't even look at us. We just knew. We didn't say anything though - not to each other, or the family waiting in the waiting room. Jason's mom, dad and grandma were there with us.
They finished up and Cole was slowly waking up but super dopey. He just wanted to play but couldn't even stand up!!! We had promised him McDonald's afterwards, but he needed to wait a little before eating and just wasn't understanding that at all. We headed home, with Jason's mom and grandma in the back seat with Cole. He was acting so silly - just dopey - but grumpy at the same time. Really wanting to just eat some chicken nuggets and french fries.
Jason's cell phone rang, but it was work, so he didn't answer. They were great about bugging him when he was off, so we just assumed they were bugging him. They kept calling. My phone never rang, no messages at home either. Finally Jason answers and his coworker said the drs office had been calling. They had all our numbers, not sure why they would call him at work, I mean, we'd just left the MRI, why would he be at work??? Anyway, about that time the drs office finally calls Jason's cell phone and it's our actual pediatrician. He doesn't ask where we are, or the ever popular 'are you sitting down?' he just says 'we suspect your son has a brain tumor' and then rambles on about how we have an appointment that afternoon with a neurosurgeon. Jason is driving and listening to this and seriously almost took out a mailbox. I mean, we're driving down the road for crying out loud. UGH. I can still remember the sickness I felt. But at the same time, I couldn't lose it because Cole is reaching for me from his car seat and he's so hungry and totally doesn't even understand this. He's only three.
So, we quickly spread the word to close family. And then head to get Cole some lunch. I mean at this point, we just have to try to function and get through the next few hours. We have to entertain Cole and watch him very carefully - he's still super groggy and can't walk on his own without falling over - those darn drugs they gave him had him all out of whack! He had his McDonald's and I think we ate - I don't really think we managed much food consumption though. Cole wanted to go to the bookstore and play with the train table. Again, at this point, we'll do anything to keep him happy. We still had several hours to wait for the drs appointment. We don't really even know what to do - how do we start this? There's aren't any books on what to do if you think your child has a brain tumor. We sat in the floor around the train table and played with Cole. Jason's brother, sister-in-law and nephew showed up. They left work and checked Michael out of school - everyone just knew we needed to be together. At some point I remember us all going to Krispy Kreme because Cole had a thing for chocolate covered donuts at the time. We'd already done McDonald's and the train table (and purchased quite a pricey train set - let the guilt begin) so why not donuts, too.
Then we just waited................
We headed to the drs office, but you know how those things go - in a medical plaza, you can't find the one doctor you need, because he's only been there about 6 weeks and there's no sign for him office yet. We ended up in the drs office that took care of Jason's grandfather who was also a neurosurgeon - but not the one we needed.
Finally we find the right place but he's not there. He's in surgery and we don't know how long it will take. All of us are there in the waiting room. Can you imagine? Me, Jason, Cole, Mawmaw, Pawpaw, Uncle D, Jamie, Michael, Grandma and Amanda. I'm sure we were an intimidating bunch. Jason's grandmother told the receiptionist we needed a conference room because everyone needed to hear what the doctor had to say. They thought we were nuts. We finally got called back to an office and waited there even longer. Cole was still so groggy and dopey, bless his heart. Jason's mom and grandma took turns hanging out with us while we waited. The nurse was wonderful, just kind and very understanding - she knew we were struggling and just wanted to know.
So finally this doctor comes in - this guy that just looked nice and kind and normal - not the intimidating doctor type or the one that just seems to not care (we'd already had that with our pediatrician). He got right to business. Wanted to know what had happened so far - what led us here, symptoms, etc. I think he was just trying to losen us up and get to know us. He played with Cole a bit and really paid attention to him. He told us there was a mass - almost the size of a golf ball and was between the brain stem and the cerebellum. He showed us pictures on the computer but I really don't remember that and what they looked like. I guess it's just one of those things I blocked. He told us what his plan was - Cole would go into the hospital the next morning. He would have a procedure done that morning where they would drain the fluid that was building up - at this point he had hydrocephalus. And then, he'd have the weekend for the fluid to drain and on Monday morning, they would remove the tumor. He told us that there were three things to be concerned with after surgery. For the life of me, I can't remember all of this - just this one - his eyes would not be able to focus well and would likely not be lined up where they should be. I don't know why this is the only one I can remember - Jason would remember all three, I'm sure. We didn't get into the other details. We didn't know for sure what type of tumor it was but Medulloblastoma was suspected. In this tumor, I believe the doctor said, 75% are cancerous. CANCER. As strange as it sounds cancer never really sunk in. I mean, we'll be in the 25% right? The ones that aren't cancer. That's just the way it had to be. My mother in law asked him what we could be doing and he said "pray" - seems like he asked us to pray for him during the surgery, too - but maybe that's not accurate - I just know he said he would be praying for Cole, too. All of the sudden the weight was lifted off my shoulders. It was gone. I was feeling peaceful with this doctor. I knew we were in the right place.
For days after we asked ourselves why? Why did it take so long for a diagnosis? Why did the pediatrician just keep blowing us off? What if we'd found out earlier? Well, honestly, I know everything happens for a reason and if we'd discovered any earlier, this doctor wouldn't have even been in Mobile - which would have led us to Birmingham or New Orleans for surgery. Honestly, New Orleans was closer and we may have ended up there. There - where a hurricane came through several months later and practically destroyed the hospital we would be in. It all happens for a reason.
Jason called his work and explained to them that they suspected a brain tumor. His boss said he would get us in touch with his St. Jude connection right away. They were big fundraisers for St. Jude. They were members of the St. Jude by the bay organization in Mobile. This organization actually funded the building that the gift shop is in at St. Jude. We were like, ya, we'll see. After all - we didn't know what we were really dealing with yet. But it was all for a reason!
We took in all the info we could and left. We told everyone what was said. We went home. Someone went and picked up dinner, but I'm not sure how many of us ate. Cole played with his new train set and we may have been watching American Idol or something like that. I remember noise in the background. I got on the computer and started looking for information. There wasn't much. There wasn't one place to get all the info I needed. I joined a few message boards and quickly found several other parents of medulloblastoma kids. I was messaged immediately with information about St. Jude Children's Research Hospital. I put it aside, I mean, we're the 25% - we won't need a cancer hospital. And at that point, I still don't really think cancer was in the picture. I had really not thought that deeply about the cancer part. I was relieved to an extent because we had an answer. We knew the tumor could be removed. We knew that he wouldn't be throwing up anymore. We knew his eye was turning in because of the tumor so after it's gone - everything will be fine, right? UGH. We barely slept and hardly talked that night.
The next morning we stopped at Walmart on the way to the hospital. We got some snacks and stuff - a book probably, a toy for Cole. Seems like for some reason I bought some tshirts. Really random. Like it was any other day. I do remember taking a picture of Cole and Jason by our front door, before we left that morning.
We checked in the hospital and started the process of the first surgery. Cole had to be checked out - temp, blood pressure, weight - all that stuff. He was fine, just bopping along doing whatever he was asked. He had no idea what was happening. I remember us taking him back for surgery - they would let us sit with him for a few minutes and then take him in to surgery. We couldn't go in there - we couldn't walk with him to the door - we would be left behind to wait. I remember Jason holding Cole and both of us praying he would just fall asleep in our arms so he wouldn't know he was leaving us. It happened, too - he got sleepy and put his head down. We handed him over to the nurse and the doctor checked in with us - assured us everything would be fine. And then he asked if we wanted him to just shave the spot of the surgery, or all of his head. I said the whole thing. I don't know why - but I felt like that would be better. What was I thinking???
The drain was put in and everything went well, but when Cole woke up after surgery, he didn't want me. He just wanted his dad. Now I'd been at home with Cole for the first two years of his life. I was the one he went to for everything. I was the one that picked him up from daycare and he ran to me all excited to see me - every day! I was the one he wanted to lay down with him for a nap, or at bedtime. He was a mommy's boy!!! I loved it. But suddenly he didn't want me. So, it was all on Jason and he was ready. He said he felt like God had prepared him for this journey. It was up to him and Cole now. I didn't get what that would mean. But suddenly our roles had changed. I was in charge of everything else - the technical stuff, getting the info, making sure we ate and Cole had things to keep him happy. The cuddling and rocking and holding was all Jason now.
Cole spent the weekend hooked up to the drain and by Saturday afternoon it was removed, so he was a free man. He had the chance to wander the hospital and play in the floor and be a three year old. Everyone came to see him in the PICU. Everyone that came brought him a treat. He was covered up in toys. I'm sure none of the other PICU rooms were so full of toys. Puzzles, stuffed animals, books - anything you could think of. He was enjoying his treats and visitors. His head was all wrapped up in a bandage and covered with a type of stocking which ended in a knot on top of his head. He called this his tail and was so excited that he was now like Eeyore.
Look at that sweet smile:
Playing in the PICU room!
So that's the beginning.
The next Monday, he had surgery. Stay tuned for more and thanks for reading - I know it's a long story! I appreciate you for making it through!