Tag: Childhood Disease

So last night was rough. After a 2 hour meeting with our oncologist, Dr. Wood; Woody (talk about a sign, Dr. Wood and my husband, Woody:)) and I were completely overwhelmed and had no idea where to turn. We were basically given 2 options for Ronan’s treatments and had only heard the opinions of our one oncologist here (who is amazing) and his “team.” Around 9:30 p.m. we called in our own special team to consult with. My twins’ godmother, Karen Kotalik,(who i would trust with my life) her brilliant husband, E.J.,my dearest friend and Ronan’s godmother, Trish, her amazing boyfriend, Max and last but not least, my other BFF, Lauren, via telephone… who has been researching morning, noon, and night for me. We sat in the cafeteria for hours and hashed out numbers, results, treatments, side effects, doctors, hospitals, resources, etc…. I felt lost, scared and exhausted. It also may have had a little something to do with the fact that I’ve had about 5 hours of sleep in the past few days. Our doctor basically wanted an answer in 24 hours. I freaked. 24 hours to decided the fate of my precious little guy. How in the world did they expect us to come to such a huge decision so quickly? It seemed so unfair and cruel. But unfortunately, time is not on our side. And decisions have to be made sooner rather than later. We compiled a list of the people we needed to get in touch with for the next day. The best of the best doctors in neuroblastoma, hospitals, people who have been through this, etc…. We spent all of today making phone calls and getting Ronan’s information to all the right people. I was amazed at the positive responses we got from doctors all over who were willing to take their time to talk with us. After a morning spent researching, I went home and met up with Woody and we were both in agreement on what to do. The way that the pieces fell together was almost like a little bit of  magic/art/science/ and love. I’m not going to go into details about what road we are taking on here. That would take way too long and the details are very difficult to explain as a mom. I can tell you that after meeting with Dr. Wood again tonight, that he is in agreement with us that we have chosen the right path. Last night when we met with him Woody straight asked him, “If we do this treatment, is this what you would do for your son? ” He wouldn’t give him us an answer. Tonight with the different way we’ve chosen to go, Woody asked him the same question. His response was, “absolutely.” I know in my mind, body and soul that this is the right path for us to take. This is our best shot. Dr. Wood also said something tonight that will remind me that Ronan is no ordinary boy.  He told us out of all his patients he’s seen over the years, that he’s never seen anyone with the disease that Ronan has, act the way that Ronan is acting. Basically, Ronan should be acting like he is very, very, sick. This child is acting the complete opposite of that. If it weren’t for his black eye, incision across his head, the broviac catheter in his chest, you would never know that he is fighting for his life. This just proves what I’ve known all along about my beautiful little boy. He is a fighter, he is strong, and he is unlike anyone on this earth. My friend Lauren told me tonight after spending sometime with us that she physically felt something protecting us as soon as she walked into our hospital room. I couldn’t agree more. It’s almost like Ronan has his own private force field surrounding him at all times. It is a beautiful thing to see and feel. There is more to this than just this awful disease. Something bigger is out there and there is a reason why this is happening to us.

Thank you for following my blog and loving Ronan the way you do. Even the people who don’t know us at all. I am trying my best to read all of your comments and beautiful words. They are so comforting to me, especially when I am waiting around for Ronan to come out of anesthesia or back from test results. Mama needs to snuggle up with her little angel now. Goodnight to all my sweet angels out there. I will never be able to thank you enough for all you are doing. I am going to save that job for my Ronan Sean.

xoxo

Ronan with one of his angels, our Mimi Kay

Tonight I got to go and visit Ronan. Maya asked if I would write a little and tell you how it was. When I got there, Mom and Ronan were snuggly in bed and Dad was on a hunt for vanilla ice cream at Ronan’s request. Mom is busy keeping Ronan comfortable, he loves her to read to him, scratch his head, rub his feet and he especially loves to hear both mom and dad take turns singing to him. But as Mom mentioned before, he’s mad. He’s mad and doesn’t want to say much…and that cuts mom like a knife. But being mad is just what we like to see because this angry boy has already started the fight and couldn’t be braver and stronger. So strong, that he didn’t take any pain medication all day and was refusing to take his tylenol. I want to tell you all what else I saw tonight, and that is two parents who are like nothing I’ve ever seen. An unbreakable team stronger than any words can describe, committed to fighting through whatever it takes. Dedicated to their precious son and to supporting each other. Maya and Woody we all love you, you are not alone, we are all here to join the fight. RONAN, just like his name sounds, is a WARRIOR and is going to win against this evil cancer! Mom said it right, you picked the wrong kid to mess with, Cancer!!!!

As I sit here writing from my iPhone, I am trying to block out the screams and cries of a six year old boy, Even, who we are sharing a room with. Not sure what kind of cancer he has but he’s 2 weeks into treatment. His tummy is hurting, his legs are hurting and he wants to know why he has to take so much medicine. I hear the desperation in his mom’s voice and know her pain. I’m waiting to wake up from this nightmare because this can’t possibly be real.
Ronan is sleeping peacefully beside me, knocked out from the benadryl and tylenol with codeine. His body is twitching and I wonder what he is feeling. I hope he is dreaming about playing baseball or chasing his brothers. I would give anything to trade places with my baby. He has never done a thing wrong in his life and so does not deserve this pain.

Being alone during these nights I find myself looking back at my life before this. It was so perfect it was unreal. Did I take too much for granted?Absolutely. While I was home today I walked into my closet and was immediately filled with embarrassment and shame. All those clothes, shoes, purses…. and for what? None of that matters. None of that is real happiness.
Once we get through this and are home with Ronan, I have a new plan for how I will live my life with my beautiful family. A new life for all of us full of wanting and needing nothing except for the love of family and friends that surround us. Good night to all my sweet angels out there who are cheering us on. I love you all so much.

Ronan is mad today. He keeps peeking at me with his one little eye that can open and I know what he is thinking. He won’t really talk to me. Gets mad if I talk to him and is fighting me on everything we do. I did get him to walk a little bit. Woody, a nurse and I took him out of the room and down the hallway to look at a pond and some trains. He didn’t say much of anything but we talked to him the whole time while he watched the train and fish as best as he could. I about lost it right then and there. In fact I did. It was the absolute saddest thing I have ever seen in my life. My beautiful baby, all bandaged up with his left eye swollen shut and his right eye hardly open. The nurse was trying to be strong for us, but I saw the tears pouring out of her eyes. So, today I am weak. But Woody is strong. He is holding me up with his amazing strength and words. I feel like shutting the world out, but I know I cannot. I need the strength from everyone who is supporting us. I cannot fight this alone and cannot shut down. Chin up, and boot straps buckled. United together we WILL get him through this!

Ronan was really restless most of the night. Lots of tossing and turning and seemed to be in a little more pain. They have taken him off of morphine because he is allergic to it. Having a hard time keeping him comfortable and quiet. I dozed off at one point and woke up to him sitting up and he had unwrapped his entire head. He had taken off the all of the bandaids and even the tight netting. He is wanting to feel his swollen eye and head and asking what happened. I’m doing my best to explain things to him and trying to tell him that he has to listen to me and not fight me on everything. Such a stubborn little guy. I have no idea where he gets that from;)

He drank a little sprite, ate some goldfish and wants to do everything by himself. Whenever I try to help him he says, “Stop, mom! I’ll do it!” He is sounding more like a 16 year old, not a 3 year old. We don’t have any tests scheduled today. We may be moved out of the PICU and up to floor number 2. Hoping he’ll rest well today and settle down a bit. He needs to heal as much as possible before we start the chemotherapy.

Nights are the worst. It is during this time that my fighting mind, body, and soul want to shut down. Reality sets in, and everything slowly starts to seep in. While in the presence of Ronan, I always keep the positive vibes and thoughts going. It is sitting alone in a cafeteria, while trying to muster up some sort of an appetite that the evilness of this situation steps in and wants to take over. I am strong and push these thoughts out of my head. I have no choice. To be any other way would not be fair to Ronan. He needs me to fight 24/7 for him. And I do, even in my sleep. I will fight for my beautiful “Brad Pitt baby,” until we beat the shit out of cancer.

I thought about keeping this blog all business with only my positive, upbeat attitude. But I can’t do that. The darkside of what I am feeling and going through is real and painful. I need to be vocal about this and I need an outlet. This is me, this is real, there is no sugar-coating anything. I am going to scream, cry, cuss, and yell. This is my reality, this is my hell.

Two weeks ago, we were still in Washington state enjoying our time with my family and friends. Ronan resembled nothing short of his loving, active, happy, playful self. As I was taking the boys’ Christmas card picture, I noticed Ronan’s left eye looked a little off. It was so minor that no-one else except my neurotic picture taking eye would have noticed. The days went by, and nothing changed. His behavior, activity levels, appetite, etc. remained unchanged. Still happy Ronan.
About a week ago, right after we got home, Woody noticed. We thought perhaps some dust, a leaf, bug bite, infection . . . could have been the culprit? Here is how the rest of our week unraveled:
Monday (8/9) Saw Dr. Campbell (Pediatrician) – she was not concerned and thought it was a chalazion; got referred to a Pediatric Ophthalmologist.
Tuesday (8/10) Saw Pediatric Ophthalmologist – walked out due to MOTHER’S INTUITION (horrible experience).
Wednesday (8/11- early afternoon) Saw Pediatric Ophthalmologist #2, Dr. Brendan Cassidy. Mother’s intuition was positive with him and his team. Sent us to Phoenix Children’s Hospital immediately for an MRI.
and so our journey begins . . …
Ronan has been diagnosed with Stage 4 Neuroblastoma, a rare, but most common, childhood cancer. Findings from an MRI and CT scan show two masses. One in his abdomen (adrenal gland) which is the primary source, the other on his left orbital bone (causing his eye to push forward). Neuroblastoma is very treatable and even curable. We have our plan in place, and the Thompson Family Combat Boots are on!
We are so blessed to be surrounded by the most amazing family and friends on this planet. We know that Ronan is a fighter and the strongest little boy out there, and we know we are going to beat this. Please continue to pray and keep our family in your thoughts at this time.

Love, Maya