Fuck Neuroblastoma, Fuck Cancer

First let me say if this offends any of you, you will just have to ignore it, because this is what we feel and honestly using a cuss word is the best way to describe it and get out exactly what we feel. Oh by the way, and if you want to delete me as a friend from facebook or not read this, honestly you know what, FUCK IT. I’m done worrying about who I have offended, done worrying about what others feel, this is about us. This website is about our daughter and her journey through fucking cancer and what she deals with and we deal with on a daily basis. This website is about how we feel about what she is going through, so either take it and read along, or don’t.

Maya, Ronan's mom, from http://www.rockstarronan.com/ says it the best!

I’ve tried to take some time to swallow this and actually take it all in. As parents, I always thought we would be getting Emily ready for a dance recital and what she will wear or even playing soccer or something else, but I never thought as parents that Doug and I would be talking to each other about this word we learned about in December called fucking Neuroblastoma. So, yes in December we had heard of cancer, but never Neuroblastoma. Our whole lives changed when that word entered our lives, for good and for bad. In laymen terms, Neuroblastoma sucks. Its heartbreaking that my 10 year old, I can’t always be there for her when she is going through things such as the dentist or normal things of that nature, but her dad takes care of it, but as a mother its hard on me, that I can’t be in a million places at one time. Its heartbreaking that instead of potty training Brianna, Doug and I are daily just trying to keep up with life, the house, and Emily! Brianna knows no different than the hospital and this to her is just normal, that sucks that a 2 year old thinks the hospital is normal! WTH. And it is even more heartbreaking that Emily has had to endure 2 painful surgeries, 8 rounds of rough chemo, the side effects, a line that goes directly into the vein of her super vena cava near the atrium of her heart., weekly dressing changes, radiation, several times of being sedated, scans, bone marrow biopsies, transfusions and many other.
Today as parents, Doug and I are sitting on the edge of our seats, wondering what the followings days will bring. Yesterday we got the dreaded call from CHOP on the MIBG Scan, the one we didn’t want to hear about. The 4 spots in her legs are still there and there have not been any changes in those spots, and the spot in Emily’s skull that VCU pointed out is still there, but it is still as CHOP said, “Is it NB or is it not”? However, yes, however came up. The MIBG scan found something else, in her lumbar spine. The spot in her lumbar spine has never showed in any of the scans before and they are seeing it now. She said it is really small, but it is not impressive. Dr Bagatell did not even see it when just looking at the scans, however 2 of the top radiologist see it. What does this mean right? Well, at this point, antibodies that Emily was to be admitted on Monday for, has been put on hold. Tomorrow we were supposed to start giving Emily her GM-CSF shot at home (for the next 14 days), that too has been put on hold. They are scheduling a MRI for Monday to further investigate what the spot is. If the spot is NB, then Emily is considered “progressing” and she will not qualify for antibodies treatment and we will be discussing what to do next, what treatment should be next? If the spot is nothing (which is what we hope for), we move forward.

As parents, this has broken our hearts, fearing what tomorrow brings. Last night, Jessie had a parent/teacher conference, I was there physically and spoke up, but I don’t feel I was really there. I came home and made dinner for the girls, but I barely remember doing it. Last night Doug and I really didn’t talk, just took care of the kids (whom both fell asleep at 10 minutes to 8, very shocking!), talked to Jessie when she got home from dance for a little while and then all the kids were asleep. Doug and I feel out there, mindless with our thoughts all over the place, there was a lot of silence (I mean really what the fuck do you talk about when you hear this?), the silence was time for us to take things in and I guess you could say regroup, not that I feel we have regrouped, because I still haven’t regrouped from when she was diagnosed. I can’t tell you how hard this is as parents who want nothing but the best for their kids, and when the call came in at work yesterday, I broke down in tears when I hung up the phone, and then getting into the van last night with another breakdown. To watch my husband break down in the laundry room, and just be there to rub his back and we be there for each other. When I came in the house, I just held on to Emily for a little while with tears running down my face, she is such a cuddle bug. I later watched Doug do the same thing. But I don’t understand why any of this is happening and what we did to deserve this, but it fucking sucks.

We will leave Saturday afternoon to head back to the campground for Emily’s MRI on Monday, from there we have no idea what to expect. Right now we need lots of love, thoughts and support to get through this next part of this journey.