January 24th, 2014 my life changed forever. And not in a romantic, wonderful , or amazing way. It was gut wrenching, earth shattering, breath stealing, unbelievably horrific way. Never, ever in my wildest dreams would I have ever believed I was the mother to a 32 month old with a massive brain tumor. Never would I ever have believed that my Son would have to start going through 18 months of chemotherapy before his 3rd birthday. Nor would I have thought that God was in my life today, and has been for such a long time. I was extremely angry the day I found out he had a massive brain tumor that had started growing off of the brain stem, and had grown to an exceptionally large proportion. I can't even fathom that this has been growing inside of my precious baby boy for probably over a year. For so long that the nerves that run to his tongue/mouth, his ears/hearing and his shoulder muscle (I forget what the doctor called it, I could guess but I'd probably be way off. Anyway the muscle that allows you to "Shrug" your shoulders and move them, those nerves went straight through his tumor, they ran through it. Literally. So I will get back to the beginning...
About a year and a half ago I began taking my son, Liam AKA bubba, to his pediatrician because he had been throwing up everyday at least once a day. I repeated my concerns over and over for over a year before the doctor referred us to a GI Specialist. So we made our appointments and went. All in all again, we were told that as long as he wasn't losing weight he was fine. A lot of kids flap in their throats don't develop until their older all the way up until the age of 5. Gave me some anti acid medicine and sent us on our way. At this time his head tilted slightly barely noticeable but slightly to the right. No one made a big deal of this. There were no signs. None what so ever until November 2013 we moved to Jacksonville FL from Buffalo NY. At this time the only difference we saw in him was that his attitude had changed. He was more aggressive, easily angered he threw tantrums when he never really would before. We summed this down to the move and to the "terrible twos". By December 2013 his head tilt was getting much worse. It was constantly tilted almost at a 90 degree angle all the time: if you pushed it back straight he would fuss but if you asked him to move it back straight on his own he would, but it would always go back. So we decided to find a pediatrician in Florida and make an appointment. By the grace of god. This wonderful wonderful woman Dr. Grace K. Was brought into our lives, and now I know the reason for it. We expressed our concerns. And she set up appointments for me in February to go to a neurologist, orthopedic and physical therapy. Within 2-3 weeks. Now we waiting for our appointments to come up. And something awful happens. Our car, parked outside our home in a subdivision so the streets aren't busy what so ever. And a young girl driving down the road smashes into our car. We run outside. It's totaled. Now we have no vehicle and of course getting a check from the insurance company means you have to jump through hoops just to wait weeks and weeks until finally they give you a check. Which we still haven't gotten by the way. Within a few days we start noticing that Liam is walking a little bit funny, he is holding his hands out as if to catch himself if he falls because he feels off balance, but he is still walking. The next day, he won't walk without holding onto the wall, couch or your hand. By the next day he isn't really walking very much anymore he is pulling himself to the ground to crawl. The day after that he wouldn't walk, or crawl he didn't want to do anything but sit in my bed or have me pick him up. By The following morning, Friday January 24, 2014 he still wasn't walking or crawling and when I would stand him up he would instantly start shaking really bad. I called our doctor and she told me to take him to the ER.
We took him in about 4 PM by 5 PM we was in for a KAT Scan, but the ER doctor said it could be one of two things. And the symptoms your telling me. It isn't looking good. Of course KAT scans come back fairly quickly, and within 45 minutes we had it back, and the ER doctor comes in and says, unfortunately it is a massive tumor in his brain. That is when the world stopped and my life shattered to pieces around me. Never have I ever ever ever felt a feeling like that in my life. Fear, anger, hopelessness, shock, rage, and just pure disbelief. My son? My son has a brain tumor? Wait, what just happened?! After that it was a whirlwind I sat and hysterically sobbed and sobbed and sobbed with Liam in my arms, heart wrenching, body racking sobs. I needed to sob that hard. Because the news that came next threw me into a spin again, they needed to get Liam into the OR to have a temporary shunt put in to relieve the pressure on his brain. I couldn't look at the KAT scan that night it would have pushed me over the edge. But they got him into surgery and we were in a room in PICU (pediatrics intensive care unit) the next day he was schedules for a MRI to get a better look at the tumor. And Liam was soo good until Sunday when he started getting restless and pissed that the nurses could just stick him once for blood work (that they were taking once every six hours I believe it was if not more!) we literally watched CARS and CARS 2 over and over until Monday morning nonstop. Monday morning at 7:45-8:00 we began the process of bringing him down to the OR again, they got him sedated, breathing tube in, and a couple IV's and called us around 10 am to tell us they were about to make the first incision. About every two hours after that we got a phone call letting us know he was still okay and that they were still working. By 10:30-11 PM he finally made it out of surgery and we met him up in his room. I cried Instantly. He looked so helpless; and I just wanted to protect him from all of this craziness.
The doctor came in to explain how the surgery went and what they believed would happen from this point on. Basically he thought they got as much out as they could, but because the nerves that control his mouth area, his ears and the muscles that allow him to shrug ran through the tumor itself there was no way to cut them out of it without leaving bubba with serious PERMANATE facial/shoulder damage. He and his team believed that the best thing would be to leave that small portion of the tumor still inside his brain, but that taking out 90% of the tumor he believes it would take the pressure off of his brain, and the brain stem could slowly but surely move back into the place where it should have been. They sent a piece of the tumor to the pathologist and she has great confidence that it the tumor that we were hoping for, we won't know 100% until hopefully this weekend, but by the characteristics and all that it showed all signs of a benign, noncancerous tumor. (BEST NEWS YET!!!!) they were able to do the surgery without the need to give him a blood transfusion, but was going to keep the breathing tube in him over night because he had an MRI schedules for 7:45 am the next morning. Because he couldn't see the entire tumor he wanted to make sure there wasn't any left that could still be taken out with surgery. He fought, and he fought hard against those drugs they have him. They kept telling us that normally a child would be out cold with the amount that they have him yet he was still opening his eyes, thrashing his legs and arms and just pissed off at everyone. Finally after a good hour, hour and a half they found the right amount to give him and he slept peacefully (at least someone did). The next morning he went in for his MRI and the doctors had their meeting about him. One by one (some but not all of them) they came to talk to us. The same things were said from the doctor the night before... The only difference today was that we got to seethe ctual difference (before & after pictures) in his brain. It was AMAZING!! The only options that we have to figure out what to do with what is left of the tumor is...
1. Leave the tumor alone and watch it carefully to see if it will continue to grow. And if it does grown, then we would have to go back and talk about what options would be best for him now.
2. Surgically remove the entire tumor. But leave most of his right side of his face and upper shoulder area damaged. Slack mouth/eyes, deaf in his right ear and he wouldn't be able to move his right shoulder up.
3. Radiation. But they typically do not like to do this in young children because of the side effects and how harsh of a treatment it really is.
And 4. Chemotherapy. Where he would have to come to the hospital for 18 months straight to be injected with the chemotherapy. And be closely monitored during the entire thing.
The doctors all agreed the best option was to go with Chemotherapy for 18 months (at least) because they will be doing a moderate to mild chemo it shouldn't have really horrible side effects other then the normal, losing hair. Getting sick a lot, etc etc.
So right now he is recovering In the hospital for at the very minimum a week in about 4-5 weeks we begin the long 18 month process of Chemo, plus at least that long for physical therapy to hopefully help him walk right again, and not tilt his head anymore. As so on...
I want to thank everyone who comes to read about our story. And I hope you'll continue to read my updates below in the tabs, under "message updates" I usually have been posting them pretty quickly. Life is hard but with all the Kindness of people I know and people I don't know it makes me realize how great humanity still is. Please help donate whatever you can to our family in this trying time of need. Prayers, Kindness, Support, and contributions are greatly welcomed, needed and appreciated.
May god watch over our family and yours tonight and every night there after. May you have joy peace and love in your lives and I so greatly appreciate mine, and every minute with my children.