I am sad today, I was yesterday too. I have been crying most of the day. I guess I am beating myself up for past decisions. I have 1 piece of advice I want to get across to everyone who reads this and it will be my #1 piece of advice for people when we speak with them.
If your child wakes up with mysterious black eyes for no apparent reason, If they start developing lumps on their heads and most importantly - if your child's eyes, either one of them, start to bulge out of their eye sockets... GET HIM or HER SCANNED !!!!!!! DO NOT LISTEN TO OTHERS>>>> follow your gut feeling. DO NOT LET OTHER INFLUENCE YOU. Our child went through that emergency room 2 times plus the ER in beverly and no one recognized the symptoms. I am so angry.
I did not follow my gut feeling that first night we were in the emergency room when we were desperate to find out what is wrong with Saoirse. My daughters eye was bulging out of her eye socket! She was in pain! she had lumps popping up on her head every day and they kept growing. None of what the doctors were suggesting made sense. She has fallen a couple of weeks earlier and they used the excuse that she may be having a delayed reaction. BullShit. Bullshit. Bullshit. She seemed to feel better that night when the ER doc gave her ibuprofen. Her blood counts were off too. She felt better because she was in pain and the medicine made her feel better. It was thrown in my face several times that night that i shouldn't do a scan because it could be bad for her. It was thrown in my face several times that night that if i insist on the scan that the insurance may not pay for it. I let someone else influence me with bullshit. absolute bullshit. I am so angry about that. so angry. I know it probably would not have made a difference in the outcome at that point, but she was in so much pain. I could have helped stop the pain if they had just done a scan.. I am not sure I will ever be able to let this go. I will never ever let other people influence me like that again. Ever. I feel like I betrayed my daughter during that 1st week she started showing symptoms. Classic Neuroblastoma symptoms. There is a lot more to the story of the 3 1/2 weeks it took to figure out what was wrong with her. I will tell it, just not now. One step at a time.
I am just so angry. So angry. I have been crying for 2 days. It came out last night at dinner what was wrong. I cried in a restaurant. I was so angry. So upset. But it just came out, I had to let it out. I have to just cry. It will pass. I will make it through this.
I am a husband. A dad. A business owner. My wife's cancer relapsed. We have a 3 year old. Did I mention my kid died of cancer? I write about all of it.
I am so sad for you! I'm praying for your strength!!!! My cousins little boy has stage Iv NB....he was recently been given. Year to live. Please pass on any advice in regards to how we can help. Your daughter has left a beautiful legacy in you & your husband.
ReplyDeleteMike,
ReplyDeleteI've been following your story for many months now and must say I admire you and your wife beyond words. You have endured the ultimate nightmare for any parents and survived to continue to find the strength to share your tale with all of us.
I cannot begin to imagine what your grieving process must feel like, but from what I have read, you and Kezia gave your child everything you had and you have NOTHING to be ashamed of. Nobody in your position could have known exactly what to do in that situation. I doubt even an oncologist would have known.
Do not punish yourself, Mike. Saoirse would not want you to do that. Carry her in your heart and continue on your journey, my friend.
http://www.youtube.com/watch?v=AoMzp8b52WQ
ReplyDeletecure for most cancers
Too...many...words....
DeleteIn what you may think are your moments of weakness, others find incredible strength. Your words, and your beautiful daughter's life story, are changing people....one person at a time.
ReplyDeleteMike--I would be pissed off too and infact, I am pissed for you. You are right. They should have known. It really sounds like the doctors you guys saw were not educated enough. They should have known, but for some reason they just didn't know. That sucks. And maybe that is a place that needs some real attention. Re-educating emergency room staff and peditricans on symptoms or childhood cancers. Not sure how that gets attention but it is something to think about.
ReplyDeleteI would have listened to them too - you wouldn't have known. Don't blame yourself. Please know you guys did all you could. I can tell you though that I never new anything about Neuroblastoma but thanks to you guys I do now. I know a lot more about that and other childhood cancers. I am forever changed by your story and sweet Saiorse. I will be invloved now and donate and help where I can.
I will also go with my gut or demand a scan if I ever question what a doctor tells me. You guys taught me that. Saiorse knows. She knows you guys did all your could. I know it must hurt like nothing you ever felt before. I would be a mess--I know I would. Hang in there sweet Mike and Kezia. Keep talking, keep writing, and keep that passion for your baby and for your future babies.
I bet you will get a hug from Sairose again real soon.
Please, do not blame yourself, I know it's difficult not to, but you did what you were supposed to. The delay with diagnosis probably would not have made a difference with outcome as she already had metastatic disease, but she would not have endured pain for weeks. I hope these ER doctors were not pediatricians, but even then, the rarity of the disease is not a good excuse for them not diagnosing this earlier. even just entering the symptoms into google could have pointed towards a possible diagnosis. It is good to be persuasive in these cases, unfortunately one has to. I have experienced this repeatedly myself. It's a shame that this has happened the way it did. Hard to believe and swallow. I feel your pain and anger.
ReplyDeleteYou did not betray your daughter, you did everything you could for her, and hindsight is always 20/20. Of course it is obvious now what the diagnosis should have been, but in the moment, when this all first happened, it may not have seemed so obvious. And we are all groomed to trust doctors, and listen to what they say. It is only after you've been in the trenches that you learn that doctors don't know everything, and you have to be your own educate advocate. You did what any parent in your situation would have done. I know you have to get through this process, and you are trying to find outlets for all your anger, which is normal and expected. But you will be able to let this go some day, you really will. You deserve to be happy, and to accept that things happened that you cannot change, and that to dwell negatively on those things is a waste of energy. I hope you can find peace soon.
ReplyDeleteYou did far more than most parents would think to do. You also tried to have some faith in the medical system. Please know Saoirse death was not in vain. I hope that you get some joy and peace today.
ReplyDeleteI am very sorry that you and Kezia went through with this situation. But, please don't blame yourself for what had happened to Saoirse. And, you did not betray her either. It is just that you and Kezia were not aware of NB yet and apparently for doctors at ER as well. You were not sure what to do at that day she had gotten those symptoms. You were listening to what doctors have to say. Isn't that what people are doing by listening to them and thinking it is fine/nothing because that is what doctors are telling them, even though, they might disagree somehow? I agree doctors are not ALWAYS correct on what they discover or have to say. Most of them are wrong on what conditions or mistake those for others. It often happen to other people that were diagnosed with wrong conditions, etc.
ReplyDeleteIt is important and good that you let it all out by crying, etc. It helps with your emotions rather than holding it all inside. Praying for you and Kezia and sending healing thoughts.
wow. that's horrible. i am so sorry. again, please try not to direct the anger toward yourselves by way of saying you failed to do something you "should have known better", etc. how could you have known? please don't be unfair to yourself like that. you didn't fail her. you trusted the advice you were being given, in that moment and time, and i'm guessing you're forgetting other factors that at the time played into your decisions along the way. i would be so angry too, though. you have a right to be angry. beyond angry. when it comes to babies, it just seems unfathomable to me that people in the medical profession would downplay the symptoms you're bringing up when they seemingly came out of the blue. even regardless of a previous fall. it's not like she was playing sports and probably didn't fall from that high. there definitely needs to be a much greater awareness overall, amongst medical profession and general public, and i think you all will make a tremendous difference in the landscape of this disease. you already are. people are talking about it and sharing and that's the beginning.
ReplyDeleteI too know the pain of losing a child,,different situations but we both lost a child,,,I was five 5 months into pregnancy to go for a routine checkup that my babygirl no longer had a heartbeat,,so I can feel your pain,,some days I wake up crying,,some nights I cry myself to sleep,,I have blamed myself,,,Keep praying and god will bring you through,,just keep the faith,,and if you want to cry,,cry,,,let it all out,,i found myself bursting out in tears anywhere,,during a song,,looking at tv,,even driving down the street,,but I have learned thats its okay to cry,,
ReplyDeleteMike, I too have struggled with much the same feeling that I failed my daughter. It took 8 months of emergency room visits and constant primary care doctor visits before she was diagnosed. They even suggested I get psychiatric help for her as she was "obviously" crazy. In the end, we are only parents. We were never prepared to journey through something like this. There was no class on spotting symptoms of cancer, there were no awareness classes about children and cancer. Nothing in our lives could have possible prepared us to face this, to figure this out or to save our children. But all of that logic....it just doesn't amount to anything when it comes up against the grief of a parent's heart. What is apparent is that you did the best you knew how when you knew to do it.
ReplyDeleteBlessings to you and your lovely wife in the terrible place life dumped you off in.