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

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24 thoughts on “The Lack of Warning Signs

  1. egyptsfolly

    Great post. And you are very correct in that no one is prepared for this sort of thing. I want to say thank you for putting it out there, for making moms like me more aware of things to look for, and to spur us on to look, to test, and to make damn sure that someone is looking out for the kids.

  2. Glenda

    Maya,
    As I read this post today I had goosebumps. A urine test? Are you kidding me? That’s so unacceptable. BS!!!

    So breaks my heart! It aches for you as a mother and for your beautiful blue eyed Rockstar!

    FUCancer is right!!!

    Peace and strength! I hope Ro comes to your dreams tonight! Xo

  3. hartandhunter

    I just found your blog today.

    It resonates deeply with me. My circumstances were completely different but the feelings you express, the situations… down to the Zoloft induced coma and the need for Ambien to even sleep. It sent chills down my spine. It reminded me of being so angry, with everything. God, the universe, everyone who was helping and not helping.Of feeling completely empty inside except for the sensation of acid slowly eating away at the edges of everything. Thank you for finding the words and being so honest. My heart is breaking for you and your boys.

  4. Sarah

    Thanks for sharing, do you happen to know if like every peds office would offer this test or not? I wonder if I would have to put in a special request or not. I have been following your blog on and off, on May 3 I was delivering my daughter 6 weeks early and a few weeks passed without me checking back in. I literally could not believe what transpired in your life in those few short weeks. Little Ronan will be forever missed, thanks for sharing him with the world. You are in my thoughts and prayers and you pick up the pieces of your broken heart.

  5. Gems

    You are amazing in how you are taking this and helping others. When Sammy was diagnosed in 2009, he has seen 4 doctors in a week and all of them said he was fine…he even had his annual physical. All clear….but insurance doesn’t cover the blood-work which would have caught the cancer!!!! NOW I insist on it every year for my other son! Who knew? It turned out that 4 doctors missed the later stages of leukemia. Sammy had so many blasts filling his chest cavity, his heart was being pushed out of place!!!! He had days left…thankfully even his high risk leukemia was treated with some success…he has a lot of issues right now but I am grateful to still have him…I am soooo sorry your beautiful boy is not in your arms now. My point is…two more days and I would have been mourning…doctors just don’t know how to detect something that takes the lives of children every day. I also had no idea about gold ribbons, or September being anything more than a back to school month. So much needs to be done to raise awareness BEFORE treatment is diabolical or ineffective.

    I am with you….I hurt for you….I cannot say I know your pain but I have walked in the shoes of a cancer mom for two years and it hurts! We have to hurt it back!

    Katy xxx

  6. Melissa

    Don’t beat yourself up over not knowing about these things before. I never paid a lot of attention to anything to do with brain tumors until my sister was diagnosed in ’99. Now it’s all I think about. I think until we are affected by it, we don’t realize how hard it is on people.

  7. Jaime Harris

    Wow, a urine test? Unbelievable! Ronan was soooo cute in this picture, I can’t believe he got sick! Looking so healthy and precious. It still makes me feel so sad. It can happen to any of us šŸ˜¦ I’m so sorry for his loss. I didn’t know cancer month for kids was Sept. or what Neuroblastoma was before you. Thank you for sharing your touching story with everyone. It’s had an impact on so many people. God bless you in all you do! Prayers always! You have an army of love and support behind you! xoxo

  8. Shlomit Robbins Gruber

    I, too, was blown away when I began to research neuroblastoma (during Ronan’s treatment) and found out a urine test can detect this. I couldn’t agree with you more that we have a RIGHT to be informed and made aware of these things. Why should doctors, bureaucrats, etc. decide for us which diseases will be brought to our attention, covered by INSURANCE and just generally DIAGNOSED! I could not believe that neuroblastoma could be caught early with a simple urine test…couldn’t believe it. But it’s not done. And for those readers asking if their pediatrician offers it, I can almost guarantee you’ll be told that this is NOT something they’ll test for, not something their “authorized” to do through insurance… It needs to become a part of our medical system. How outrageous that there exist any simple tests that can detect cancer cells early on in our children’s bodies, and they are not being done. This is what we need to fight for and CHANGE. I’m in.

  9. Stacy

    Maya,
    Unfortunately, I knew about Childhood Cancers when my little boy was born only because what he has, is the only other disease that seems to be beating out childhood cancer by very large numbers…talk about a cruel joke!! Anyway, through research I did read about the studies in Japan regarding the urine testing for NB. You are correct, It is very simple and like anything else, requires money and data/evidence support to go further. Maybe you could focus Ronan’s Foundation on the research that is supporting these urine studies. Pick a huge hospital, lay down the research…samples would be pregnant moms coming in for their well-visits. Much data could be collected as we speak. Then, by laying down the evidence, the Medical Industry can move forward. Remember, today the medical field is only as strong as the scientific research and supported evidence that’s current and out there…Dr. Kushner is an example of the industry’s LINEAR thinking. By throwing all you got into that urine testing research, even if it is only one of the ways so far to detect NB, you and Ronan can make a huge difference in the future fight against Childhood Cancers by early detection. Every pregnant mother out there will happily pee in a cup in honor of The Thompson’s. I can see it now, “The Thompson PEE test for Early Detection”. Tests are all conclusive after your $40.00 Co pay.

    šŸ˜‰

  10. Susan

    We also had the swollen eye..but it receded some and so it was 2 weeks later when he started limping (after weeks going into the doctor for fevers that they dismissed) that he was finally diagnosed. I knew nothing either. He’d never even been on antibioticsā€¦the healthiest kid ever, until he wasn’t.

    Have you heard the argument against urine testing? It goes like this: A good number of kids are born with NB and it recedes on its own with no treatment. If they urine test kids at birth then those who are positive will be subjected to tests and scans/radiation and surgeries that will affect their future health when the NB would go away on its own anyway.

    I am not saying I agree with that – I think it should be up to the parents and they should be educated about all the outcomes. That’s the argument we are up against, as parents.

  11. Lauren

    I first learned about neuroblastoma in February 2010 when I found Layla Grace’s blog. As a teacher, I went to our school nurse and asked her what all she knew about NB. Together, we googled, read articles, and learned about the urine test. She emailed the Texas Department of Health and asked if they had plans to add it to the newborn test at or around birth. A few weeks later, we received a response, “not at this time.” When will the “time” be? When will these babies be important enough? I fear that a high profile family will have to lose a child to NB before it gets the attention it deserves.

    I read Susan’s comment above about the urine test argument. Can we not find a happy medium? Maybe test at birth and if it is present test at 6 weeks before starting any treatment or going for scans? I don’t know what the answer is or what is the right thing to do. I just know that there are too many beautiful babies dying and too many families hurting due to this nasty disease.

    I have already told my husband that I will be neurotic when we have kids about these types of tests.

  12. mafiamember

    I was at a big gathering in Washington State this summer with my grandparents. I met a family who’s 2 year old has Neuroblastoma. He is in the treatment stages – because of your openness in your blog regarding your feelings….and the “not what to say” info….I was able to really connect with them. I introduced them to Ronan and am hoping she (the mom) reaches out to you. She is only 21.
    Thank you for sharing your pain with the world –
    And no, I didn’t know September was Child Cancer month…..I think i will write Ronan on my ribbon and where it all month….

  13. Lauren

    I saw on the Mominations that you and Shanna Marsh are neck and neck… Would it be possible to combine your foundations and truly have a “super” foundation? Think of the power and pull that you and the Marsh family could have with NB!

    There are so many families that have lost children that have started foundations, but if y’all could combine forces?!?!!? You could be as big as the Susan G. Komen or the leukemia and lymphoma society. NB needs a big foundation to get the attention deserves.

  14. K.M

    Excuse my language but a Fucking piss test is all they need to find it!!!!!!! WTF even if some say it would cause false positives or that it goes away in some kids, so what! They could still monitor anyone diagnosed with it a lot closer and I’m sure it would be caught a lot sooner than stage IV. I’ve even been on NB fundraiser committee’s and never heard this. We met w/ docs @ PCH, parents who had lost their babies & read as much material as we could find about NB,( so that when we went asking for sponsors ( felt knowledgeable about the disease)I NEVER
    heard about this test. None of us ever felt that well versed on the disease no matter how much
    we tried to be. Now I know why! This is some serious BULLSHIT! I want to throw up after hearing this, a pee test, seriously! It needs to change & I know YOU will change it. Billions are spent to bail out banks & corrupt companies but no one finds it important to bail out babies. Sorry for my rant, but I’m truly sick over this. Whether it would of helped Ro or not parents should at least have the choice. Get em Maya, seriously go get em & your mafia will help 100%!

  15. devonbartaDevon

    A urine test? That’s fucking it?!? Thank god for you, Maya. I’m all over this.

    On a personal note …. well … honestly, I don’t even know what to write … I’ve literally sat here with my fingers on the keys for a few minutes, not sure what to type. I know what I feel, just not sure how to put it into words, since mine pale in comparison to what you have to say.

    You make me a better mom every day. Thank you.

  16. Phaedra Hansen

    Hey…random thought here, and perhaps I missed this suggestion and response.
    You said that they can tell through a pee test, maybe one of our first steps is making that a mandatory test for children up till the age of what, 8? 9? 10? Every 6 months?
    I don’t know what that would take, but it seems like it’s a good start and something that we should be able to achieve…

    I will start looking into that this week. Maybe getting some letters written with facts and info and all that to the members of congress in each state, see if we can get something passed.

  17. Phaedra Hansen

    Oh as a follow up, cuz I just read one of the other comments, maybe having regulations to the urine tests. If a child shows up positive for it, maybe do a test or two to ensure it’s not cancerous, and hope it goes away on it’s own. That being tested already would at least give the parents a heads up and be able to gradually keep testing until it either A) goes away on it’s own or B) starts to go into Stage I.

  18. MaMaJones

    A FREAKN URINE TEST???
    Unbelievable & Unacceptable…. Definitely agree it should be done AT 1st dr visit IF POSITIVE -retested at least every six weeks until it “goes away on its own” or needs treatment. I feel blindsided by the medical community,not having the choice to have done this!! And on a side note: I guarantee you alot of parents would pay for this urine test if it werent covered by insurance…
    I am ALL OVER THIS in central FL….

    Also,love the idea of packets being available to families at the time of diagnosis with info on the disease,Info on DR’s who are the BEST,and the absolute best hospitals….great ideas in the works!!

  19. Isabelle Geers

    Maya-

    I am one of your newer readers, but when I did start reading, I did start from the beginning, and I am still catching up, though very slowly. When I started, I already knew that Ro had died, courtesy of Taylor Swift. (Gotta love her!) I am not an adult, not even a teen, but the very thought of my child someday in the FAR future dying from CC makes me sad and scared. The strange thing for me is that even before I started reading your blog and I knew Ronan was dead, I STILL can’t believe he’s gone. Even for a girl who didn’t know him. For some reason, even though any form of saying Ronan is gone makes my heart break, the one that gets to me the most is: Ronan is dead. I don’t know why, but the word ‘dead’ has always scared me. Saying ‘Ronan died’ just makes me mad and sad. But if you say dead, it freaking scares me.

    I remembered just a couple minutes ago what I was doing on Ronan’s 2nd Day of Kindness. I was at a birthday party. And I spent half the time hanging out without the actual birthday girl, and the other half arguing with the b-day girl. Yup. It makes me so ashamed to think about that, now that Ronan is in my thoughts, prayers, and computer. You too. Next August 12, I’ll think of something actually NICE to do!

    Praying for you, Isabelle

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