On the 3rd day of November 2007 God handed a little Angel directly to us in the form of a charismatic little chubb-a-lubbs that we named Brian John-Michael Perry. And on the 6th day of August 2015 our world was turned upside down from a mere phone call from our Pediatrician after a CTScan revealed that he had a tumor growing inside of his precious little brain…this is his adventure about conquering, building up strength, overcoming, inspiration and the long journey down the road to recovery.
As parents, we know our children inside and out better than they know themselves …and way more than anyone that graduated from an 8+ year medical school. So, it was very alarming when out of nowhere we began noticing a big change in Bubba’s personality. Seemingly overnight he began having multiple daily headaches that made his face wince in pain. During random times of the day it would hit him and it would hit him hard. The little boy who would play all day at my job at the Boys & Girls Club and then again when we got home to the point where we would have to force him to sleep would now come home, grab a pillow and cover his face as his headaches rendered him to sleepy land almost immediately.
Soon after, the vomiting followed. Now, it wasn’t all the time but it was pretty much every other day occurring mostly at night but sometimes in the morning when he first woke up. It was becoming hard for him to keep down his meals at times since moments after he finished it, it would just end up as a colorful jubilee in the depths of the toilet bowl. Something wrong was definitely going on inside of this little boy…In between these personal journal entries I also want to include recent pics of him returning to his crazy antics exactly 2 weeks out of surgery so that you may be inspired by his courage to continue on regardless of what is going on inside of his body. Today in the Playroom there was supposed to be a televised event where there were free costumes for the kids to choose from amongst other fun activities planned by a news network whose name I forgot. Unfortunately, at the last minute it was cancelled but at least our son was still able to chose a costume and he chose the Darkside. May the force be with us!
A night of rest after the 2 1/2 hour MRI brings us to Friday morning. Dr. Javahery and I had an early sit down together to discuss the MRI findings along with the procedure that will follow for the tumor removal. I do appreciate him showing me the MRI but it was hard emotionally to see in clear view the tumor that was costing our son his health . I wanted it out immediately! Dr. Javahery spoke to me honestly and clearly about what he had to do in order to remove the tumor. I don’t remember every detail word for word but it involved cutting out the back piece of Brian’s skull and working extremely carefully to not damage the brain stem and other important arteries that could cause major problems if touched or severed. Nerve racking to hear when it’s our child involved in such a major surgery at such a young age. But, to see him in constant pain destroys our heart. Our son’s life is in his hands.
Rest assured though that as parents research was done, especially by my wife Denean who is a Google scholar. And after coming across many testimonials to his amazing ability and stellar track record we felt much more comfortable placing our son in his experienced hands. Dr. Javahery has a fantastic reputation for a reason. After informing me that he was getting ready to perform the 5 hour procedure I felt a sense of calm and Denean felt it as well. It was as if all of Bubba’s little angels were placing their hands over us in unison. I can’t explain it but all of our nervousness instantly turned to a soothing calm. It was a long 5 hour journey of hope and prayer in the waiting area but flood waves of relief washed over us when we saw a smiling Dr. Javahery walking through those doors telling us that everything went well and that we could see Brian soon…Sunday, May 22nd 2016 marked the end of the part of Iron Boy’s journey where chemotherapy is involved. That’s right…no more chemotherapy! We’ve traveled a long road in order to get to this point but we’ve finally reached the other side changed indefinitely but thankful nonetheless. With very few noticeable side effects Lil Brian has been weakened but the road to post treatment recovery begins. When you’re going through it, it seems like an eternity but once it’s over it seems like time has flown. The result? 9 months of treatment in total.
On his last day in the 3rd Floor of the HemOnc we reflected on the great treatment, special moments and amazing Staff at Miller Children’s Hospital. It was sad to leave our new family but the feeling of conquering this huge rough patch made it bittersweet. All of the Nurses & Staff walked into Bubba’s room serenading him with a touching goodbye song, a bag of gifts filled with many of his favorite toys and a huge poster drawn and signed by everybody on the floor. Forever changed but forever thankful indeed.
For a complete update on Brian visit his blog site created and updated by a loving father https://brianbeatstumors.wordpress.com/