I will start this post off by say Thank You, Thank you to Carrie for asking me guest blog on her wonderful blog and thank you for bearing with me while I tell a very sour yet fulfilling recipe for how we are making lemonade out of some very sour lemons in our house. In order to tell you how we finally made lemonade, I have to give you a little bit of the back story……
thought KNEW that I was going to be that mom. You know that mom that freaks out over EVERYTHING. He had a temp, I would call the doctor; he tugged at his ears, well of course he had an ear infection. I don’t know what changed in me, it seemed that at the beginning I was like this more than I am now, I don’t know if it is because I am numb or just used to the lemons we have been dealt; I guess its kinda of hard not to be and you will see why.
On September 23rd our little Keegan was born into this world, six weeks early and weighing in at a whooping 7 lbs 10.8 oz and 18inches long via C-section. He was then rushed to the NICU where he would spend approximately 2 weeks and have a million and one tests run. He had MRI’s, EEG’s, CT’s, X-Rays and all the while he had no clue what was going on and really who mom and dad were. We had no idea what was wrong with him and why they were running all of these tests.
I have always kind of known there was something different about Keegan, from the moment I first saw him in the NICU I knew he didn’t “look” like other babies. I remember that first moment like it was yesterday. I was wheeled in the NICU on my bed and had only been unsedated for about 30 minutes. I remember looking at him and only being able to focus on one thing, his extra “toe”. I couldn’t take my eyes off that little piece of extra dangling flesh, I dwelled on it for what seemed like hours. I do remember he was screaming and hooked up to LOTS of monitors and iv’s. I was unable to hold him and unable to reassure him that everything would be fine, momma was right here… and already I loved him more than life itself.
Upon his release from the NICU on October 6th we were scheduled to see a neurogeneticist at Riley Hospital for Children in Indianapolis. We were told at this consultation that Keegan most likely had Simpson-Golobi-Behmel, an overgrowth syndrome that effects primarily males and can cause cancerous tumors in the abdomen. We went home feeling very defeated, yeah we had had a hard pregnancy, delivery, and we knew that there was something “off” other than just his prematurity, but we never dreamed of a genetic syndrome.
To make what could be a LONG story LONGER I will cut to the chase; Keegan has brain cancer, or Medulloblastoma if you want to be specific. There I said it. Is that a lemon or is that a lemon? I mean come on. Although the terms and percentages associated with this type of cancer still scare the heck out of me, we have come a long way. It all started back in April, although this can possibly be traced back to utero, but that is another story for another day. We were sent to Riley for an evaluation because a CT we had done at home showed that there was fluid collecting on Keegan’s brain otherwise known as Hydrocephalus. On April 15th we had our first brain surgery to install a shunt to drain the excess fluid. We went back to see our Neurosurgeon for a 2 week follow up after surgery and got the all clear “see you in 6 months”. This is where our lives started to spiral out of control and far beyond anything we could EVER fathom.
Shortly after this appointment, he started to act kind of funny. He all of a sudden had “asthma” type symptoms and then the projectile vomit began and multiple trips to the Emergency Room. The first trip he was diagnosed with the flu and I quote from the nurse: “because we couldn’t find anything else wrong, we just tell people that.” Take him home, try Pedialyte for the rest of the night and start the B.R.A.T method tomorrow. Did that. Vomiting continued incessantly. He eventually stopped eating so I took him BACK to the same ER and demanded something else be done. On May 8th in the late hours, he was diagnosed with a bowel obstruction. They got a hold of our neurosurgeon in Indy and we were whisked away via Life Flight to Indy on my very first Mother’s Day.
Once in Indy it took a couple of days for the doctors to finally get the brilliant idea to do an MRI. On Tuesday May 11th around 7pm I got handed THE. WORST. BUNCH. of sour lemons anyone that I know has been handed in a long time. My son, 7 1/2 months old at the time, had a large mass that had grown SO BIG that it was putting pressure on his brain stem and pushing his cerebellum up into the rest of his brain. His body, in essence, was shutting down, there was just no more room and the shunt was doing all it could to just alleviate the pressure.
Since then we have tried to make the absolute best lemonade out of the lemons we have been dealt. I think we value each day and each milestone a little more knowing that even though our son’s primary tumor was removed back in May, Keegan is still fighting the fight of his life and doing it like a champ.
At the End of July we did an MRI to see how his brain and spine were reacting to the most intense chemo possible. I remember thinking it’s no big deal, just another scan, it will be fine. To my dismay, shortly after Keegan was brought back to his hospital room a social worker came and got me and asked me to join her, our oncologist and a nurse in the conference room. Here is where our lemonade gets a little more sour, our oncologist proceeded to tell me (my husband was on his way to Indy from Evansville) that the tumor had grown back and it was now about half the size of what it was when it was resected in May. We ALL sat there dumbfounded-how in the world could this tumor grow back through the worst, the most intense, the most damaging chemo a child can get? All I remember thinking and saying was “omigod, okay, omigod okay.”
Read PART TWO here!