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.