Tag: yellow ribbon

The Lack of Warning Signs

A few of you have asked what the warning signs of Ronan’s cancer were. I’m thinking there are some newer readers out there, who have started reading this blog, without going to the beginning of Ro’s story. Or maybe I never explained it well. I never re read what I write and I can only imagine the jumbled mess of words that I probably display. When I write, I don’t think. I just feel and my fingers just kind of take off, without thought, letting my feelings do all the work. Thanks for sticking with me, throughout this journey of love and pain. I don’t know if I tell you all often enough, but the love that you have for my baby, for my family, for me, for my crazy writing; means the world to me. So thank you.

I am going to recap for those of you who are wondering what the signs were. For those of you who will now fear everyday that your child could be next…. because sadly I’ve learned this can happen to anyone. I will forever be pissed at the lack of knowledge I had for Childhood Cancer before all of this. Every parent should be informed and aware once they have children. If I had been aware, would we have caught this sooner? I’ll never know, because unfortunately, nobody can give me a straight answer. They don’t even know what is the cause of this awful disease. And there are too many people in the world who don’t care enough to fight and find out, because it is so rare. Or because it is too painful. Bullshit. Even if only 50 kids a year were diagnosed; which is not the case….. that is way too many to still be dealing with the nobody knows in 2011. Around 800 kids are diagnosed a year. 800 kids who survive by chance, not because there is a cure. It’s pure luck. My Ronan deserved to be lucky and I’ll never understand why he wasn’t. I would give anything to have him be the poster child for this disease, because he survived it. Not because he is dead and now I have to take his name and my pain and turn it into something positive. I have to take the death of my child, my baby, my soul mate and give everything I have to this so maybe, someday, people will start paying attention to kids who have cancer. Just maybe, I can help be a voice to save another Ronan out there; so another mom won’t have to find out what it’s like to sit in her dead child’s bedroom and sob while holding a bag full of his ashes. That is the only physical form I have left of Ronan now. His body, his eyes, his fingernails, his sweet little lips, the nape of his neck where I used to get my “sugar,” from. They are in a bag that looks like sand. All because of Childhood Cancer. All because Doctors, Science, Medicine, and Awareness has failed in 2011. Nobody wants to pay attention to Childhood Cancer. I guess it feels better for people to focus on things like Education because seeing a child with cancer, is too hard to handle. Ignorance is bliss. Best saying ever.

So, my friends. The signs. The Warning Signs. There really wasn’t any. Fun huh. I had taken the 3 boys to my parent’s in Washington State, just as I had every summer since the twins were born. We spent almost all of July there and returned to Phoenix at the beginning of August. We had the BEST time. We spent most of our time, doing simple things, like playing outside, fishing, enjoying time with my beautiful 70-year-old, youngest ever, stepfather; who is a big kid himself. He ADORES my boys and the time they have with him every summer, has always been one of my favorite things to watch in life. Ronan was eating normally, sleeping normally, running around like his crazy self. It was a few days before we were heading back to Washington when I took the boys and made them put on button up shirts, as I wanted to get a picture of them for our annual Christmas card. I spent an hour or so, snapping pictures of them, which has always been another one of my favorite things to do in life. As I was finishing up, going through the pics, I noticed Ronan’s left eye. It looked a little off in the picture that I had taken. Here it is:::

I assumed it was just some dust, allergies, or a bug bite. We had spent a ton of time outside and any of those things could have easily been the culprit. We returned to Phoenix on a Saturday, a few days after this picture was taken. Ronan’s eye still looked not quite right. Woody noticed right away. We made a doctor’s appointment for Monday morning just to check it out. The thought that it could have been Cancer, never even crossed our minds. Our lovely doctor, thought Ronan just had a cyst on the inside of his eyelid and refered us to a Children’s Opthamologist I took him that next day and ended up walking out in the middle of the appointment with her because of her rudeness and lack of concern/compassion that she had for my child and a mother who was scared shitless. I was panicking while trying to stay calm. I threw Ronan in the car, with his eyes still dilated and found another Child Opthamologist to see Ronan that next day. They had originally told me that they couldn’t see him until September. I told them that was not acceptable, that something was going on, and he needed to be seen that next day. They listened and we saw Dr. Cassidy the next day. He knew that something was wrong right away and sent us to PCH for a CT scan. Even at this point, I didn’t think Ronan had Cancer. I mean, really? That doesn’t happen to kids in this world. Especially not my Ro. I was about to learn in a very hard way; that it in fact does. More often than people realize.

So, that is it peeps. The warning signs, which really were none. But guess what??? Doctors can test for this kind of cancer with a simple urine test. YUP. It’s as easy as that. But once again, the bullshit answer to that is not enough kids are diagnosed. And I’m sure insurance doesn’t cover it. I’ll always wonder if Ronan was born with this. What if we would have caught it earlier… would he still be here? Most kids that are diagnosed with Neuroblastoma, are a Stage IV, because it is a silent killer due to the lack of symptoms. The lovely lack of symptoms, but you test for it by peeing in a cup. I am not an expert on why this isn’t done. I’m sure there are 100 different reasons. I am just a mom. Another mom, who has lost a child to cancer. But I was never given a choice as to whether I wanted my child tested for this or not. I can guarantee you, if I had been educated, and given a choice, all 3 of my kids would have been screened for this disease. Just like when they test for Down’s Syndrome when you are pregnant with a child. I was always given a choice for that and I always chose yes. I would have chosen yes, if Childhood Cancer would have been put on the plate. Would that have changed the outcome of all of this? I don’t know. But I should have been given the choice as a parent, to make that decision myself. The Medical world has a responsibility to make people aware. They are not doing it, so it’s parents like me who have to do it, until things change in a very drastic way. To them, Ronan is a statistic and nothing more. They just killed one of the most beautiful things to have ever touched this planet. And now, I have to figure out what to do with all this because I will never come close to feeling peace again in my life; unless something is done.

G’nite my lovilies. G’nite my Ro. I may be too tired to write to you tonight. I love you to the moon and back and hope you are safe.

P.S. You all know what a pink ribbon means. Did you know a gold ribbon is for Childhood Cancer? I didn’t, before all of this. Did you know that September is Childhood Cancer Awareness Month? I didn’t. I am embarrassed, ashamed, and failed as a parent because of my ignorance is bliss life that I indulged in for so many years.

P.P.S. FUCK YOU, CANCER!!!!!!!!!!!!!!!!!!

xoxo

Sad to leave, but have to go

The update is we are coming home tomorrow. I am scrambling, have been scrambling for a couple of days now, mentally, I was not ready to go back to Arizona. I feel like I’ve taken these past couple of days to get my mind wrapped around coming home. I feel like I am ready now. Who am I kidding, I am not ready at all. Everything about this trip has been so positive and I am beyond sad to leave earlier than expected, but we cannot fight the COG on this. The COG is the Children’s Oncology Group and they are who is charge of Ronan being on study. We have to stay on study, we want to stay on study, because we really are hoping that Ronan is going to be chosen for 2 stem cell transplants, instead of one. If we go off of study, we won’t have any chance of getting a second transplant, and after the research we’ve done, we really feel like this will increase his chances of survival. So, in a nutshell, the COG is bigger than the doctors and we just have to follow their rules. Hard for me because I really just want to give them the middle finger. I just want what is best for Ronan, and as I said before, I feel like letting him heal fully here is what he needs. But things change and now we are coming home.

Also, Ronan has developed an infection in his broviac line. He has been spiking fevers the past few days and they thought it was just due to surgery, but they tested his blood and one of the cultures came back positive. This is a minor bump in the road considering all we have been through. It is something that Sloan has under control and has been reassuring me that it is something that is treatable with antibiotics. Well, they started the first dose of antibiotics last night and as I was holding Ronan, I looked down and his entire head was red and he started itching it like crazy and screaming bloody murder. I looked at Mace and Tricia who were both white as a sheet and said, “Call the nurse, he’s having a reaction.” Sure enough, I was told, he had developed what they call “Red Man Syndrome” to the Vancomycin. The nurse came rushing in and told me they would start him on Benadryl to get rid of the reaction. I was pissed. I wanted to know why in the world I wasn’t told that this could possibly happen, and I was informed that it happens to about 60/70 percent of the kids that get this antibiotic. Gee, I wish somebody would have told me this little piece of information, just so I could have been aware of it instead of being scared to death because I did not know what was going on with my child. What if he would have stopped breathing or something?!? We were soon able to get it under control and thank god for Dr. Maze, who I was texting during this entire thing. He took the time to calm me down and explain everything to me. We had a not so good nurse last night who did not seem to know anything and seemed very nervous about all the questions that were flying her way. Other than that, the nurses have been incredible and so has the care. Last night was rough but we got it under control and were able to get Ronan settled down and back to sleep. His fevers have stopped and we will get one dose of his antibiotic tomorrow at 7 a.m. with the Benadryl before, which takes 2 hours. We will hop on our flight after we see Dr. La Quaglia and as soon we land in Phoenix we will have to go right to PCH so we can check in and get Ronan’s second dose of the antibiotic. He has to have it twice a day for about 10 days. All of the doctors here have reassured me that we can still start his chemo, even with the infection, as long as his fever does not come back. I’m even more mad about having to leave here now. How mad is Ronan going to be knowing that we are going home, but don’t really get to go “home” and he has to stay at PCH for about 10 days. It would have been so much easier to stay here. STUPID COG. If you can’t tell I’m a wreck. My anxiety is through the roof and my nerves are shot after these past couple of days.

I sent out an email yesterday to somebody who shall remain nameless, asking if there was any possible way they could fly us privately back home. Part of my panicking was the thought of putting Ronan on a flight. Within the hour, I got an email back, and then a phone call saying, absolutely, they could get us back to Phoenix on their private jet. No worries that is was so last minute, no questions asked, they were just so happy to help. I cannot say thank you enough to you, SB and Mr. B. You have just given us such an amazing gift in helping with keeping Ronan healthy. Thank you from the bottom of our hearts and I can’t wait for the day that I can personally thank you with a big hug and one of Ronan’s famous smiles. We are beyond grateful that there are such kind people in the world out there like yourselves. O.K…. SB….. I know you said no more thank you’s so I’ll stop. After one more huge, THANK YOU!!!

Last night was one of the most heart wrenching/fucked up/hilariously funny nights that I have ever had in my LIFE. Tricia and Macy (who now by the way are in LOVE with each other;))stayed at the hospital with me until about 1 a.m. Macy picked up Thai food (which was to die for) and we got some bottles of Sangria to go and smuggled them into Sloan. While Ronan slept, we ate, talked, laughed, cried, and laughed some more. Macy and Tricia got to see what my world is like on a day to day basis. Macy was bawling half of the time which in turn made me cry and our poor sweet roommate…. she had a crisis with a bloody nose, throwing up blood, and she was scared to death. She is the most beautiful 11 year old girl that I have ever met and she is fighting bone cancer. She has had 17 rounds of chemo and surgery on her leg. It was a privilege to share a room with her and her amazing mom. I tried to help with the bloody nose situation, since I have been there many times with Ronan. I went over and I tried to explain it to her and to calm her down but I wanted to just curl up and die. Her mom was on her bed holding her while her little girl sat and told me how tired she is of being sick, how much pain she is in and how scared she is. I started bawling, and when I finally went back to my side of the room, Tricia and Macy were bawling as well. In the 3 days that we spent with this little girl I heard her talk about all the things she appreciates in life and how she is so thankful for her “good days.” She is wise beyond her years and stronger than most adults. One of the most beautiful, inspiring, souls I have ever met with an amazing family who will no doubt, get her through this. Tricia, Macy and I bonded over so many things last night and Macy is now without a doubt, a friend for life.

I got all of our stuff packed up today while Tricia stayed at the hospital with Ronan. I came back to Sloan and Trish ran out to do some things. She is probably in the middle of cleaning our room at the RMH so we can be all ready to go tomorrow. Thank you, TT~ I don’t know what I would do without you. Macy came by to say good-bye to us and left me with a card. After she left, I opened it up and started to cry just from the words on the front of it. I’m an emotional wreak tonight. Ronan is depressed and told me tonight with his lip quivering, that he misses his brothers so much. Tomorrow is going to be awful. All Ro wants to do is to be home with Liam and Quinn but he can’t. I’m not even sure that the boys’ can come to PCH to visit due to it being RSV season. UGH. I don’t even want to think about how much Ronan’s heart is going to break going from one hospital to the next. Poor baby.

Tonight I say good-bye to New York with a heavy heart. I’m scared to go back to reality and back to my real world… I’m scared I’m going to lose the Maya that I have found while being in this city. As crazy as this sounds, this trip was one of the best trips of my life. Knowing that Ronan came here with a big job to do and it was so successful and positive, is maybe why it seems so hard to leave. I’m sure most of this is just my anxiety speaking. It will be wonderful to be home surround by my sweet twins, amazing husband, family and friends. I have missed you all dearly. I’ve just got to figure out how to keep this momentum going that I have found in this city. I will forever be in love with New York, Sloan Kettering, Dr. La Quaglia, Dr. Kusher, and the whole team of Neuroblastoma doctors. I will be back here next year to run the Marathon with Ronan in remission and waiting for me at mile 16. I love you New York! I feel so blessed to have had you heal myself and my baby!!

Goodnight world. Thanks for all of your love and support!!!

xoxo