Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Friday, November 11, 2011

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.

20 comments:

  1. We are here sending all our positive love and thoughts to you. Love you all. Just call and scream FUCK if you need to FUCK FUCK FUCK

    Kira

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  2. My thoughts, prayers and heart is with you. Noone deserves to go through such hell and you have done nothing wrong and nothing to deserve this. I can't sit here and say I know how you feel or what you are going through but my heart is breaking for you and I cannot imagine. I pray for God to heal Emily and I hope the day will.come soon that she is free from this. Much love to all of you!! Love, Amber

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  3. I will continue to lift your family up in prayer!!

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  4. Heather J. StevensNovember 11, 2011 9:07 PM

    what do we say that can make you feel any better about anything??!!! there is nothing. But I raise emily and all the family everyday always ending with tears coming down my face as they are now....I had a day of fasting for emily and others close to my heart to show GOD that Im willing to give all i know so he will heal and will again but this time just for EMILY AND FAMILY.... GOD BLESS YOU ALL>>I continue to pray for you and the doctors that are involved....

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  5. I am so sorry to hear of this sad news. I think you are right to have such strong language for something so horrible. It should be against the law for kids to have any kind of cancer!! This just shouldn't happen!! You are amazing to endure this as long as you have! While I have never met you, I have been following Emily's journey on facebook and your family is amazing, Your strength is commendable and to be upset only proves what I have already felt about you. You are a strong person, a believer in all things good, a fighter and a family deserving of not only a miracle but a positive change for good! You are in our thoughts and Prayers. Let Fuck Cancer WIN!!!

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  6. Soo sad and sooo sorry. This is wrong, this should not happen to a 90 year old but beautiful Emily is a baby. Go right ahead, call that cancer all the swear words that come to your mind. No one would disagree with your choice of words. We all feel the same way for you. I am sending as much healing strength asnpossible from my heart to Emilys. I prined a photo of her and put it in a locket I wear around me neck. Every time she crosses my mind I send her love and healing. She is with me. Please let the scan come back clear. Xx. Colleen from australia

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  7. You are right, cancer sucks. All I can do for you is pray for the best results. Tonight I hope you go to bed feeling comforted to know that all that read have their arms wrapped around your family and holding you up when you feel you may fall. Blessings for a better day! Kara

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  8. No one should ever be offended! My thoughts and prayers go out to you all! It takes a strong family to endure all your going through <3

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  9. Shannon/Doug,

    I read your posts more than you know, more than *I* know. I suspect there's a few others that do as well. We're right there with you, with our own NB kids. Our own little warrior Lisa has been fighting this fight since she was three and a half, she's now seven and still fighting.

    Today is a great day for Lisa. We've had a great week as a matter of fact. There are lots of great days, and... as you know, not so great. You have had your share of both I'm sure. While I truly wish I could, I can't take away any of your pain or frustration but I feel it. Evey minute. It weighs on me as it does you. I know there's nothing I can do about the sucky times, but I have learned to savor the good ones.

    Shout out your anger and frustration. Vent. We're listening and we understand. Then, when you're ready, fight on.

    Sending Emily (and you) our very best...

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  10. Oh Shannon....I don't even know what to say! I wanted these scans to show she is perfect and that this hell is over for your family! This is so unfair. If there is anything at all I can do for you, please let me know. Much, much love to you all!

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  11. I for one am not offended and I just wanted to say, I <3 you and am praying for Emily, you, and your family. Sending lots of positive, loving vibes and great big {{HUGS}}

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  12. Christine McnallyNovember 12, 2011 4:45 AM

    What can we say except that we will continue to pray for all of you,you are always in our thoughts.xxxxxxxxxxx

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  13. Thinking about you all often. <3

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  14. You need to say whatever you need to say, write whatever words you need to write, and not worry about what anyone else thinks. When you can just express yourself on here in any way you need to, I hope that it helps, even just a little, to release some of the emotions you must be feeling. I'm sending love and prayers to all 5 of you for what each of you needs. Love to you all, from friends you've never met in California. - Danielle

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  15. I say fuck cancer, too. I don't think any decent person would hold that against you. And if they do, well, screw them, too. I'll just keep on keeping you in my prayers.

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  16. You have my love, my thoughts, my support and my prayers.

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  17. You are so right Cancer sucks, My sister is battling with it right now as well, She has spinal and neck. I always have you in my prayers.

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  18. I have been following you on FB since day one. Anabella my 5 year old daughter has been sending Emily some drawings she has made her along with the Cunanimals...We keep Emily and your family in our prayers everyday. Your journal brings a tear to my eye every time, I think that a family should not need to go through suffering especially Emily being so young and her siblings seeing her sister having to deal with this. I can not imagine doing what your family has done and has to do. Sometimes you just need to express yourself and get things off your chest. Try and stay strong in front of the little ones as you have been and continues to be wonderful role models. Hugs Marion W/Comfy and CUNA on FB

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  19. I shall continue to pray for the family as I have done since Lynn started posting about Emily's journey. I also pray for Jessie and Brianna because they need special prayers said for them too. Love,Prayers and Energy go out to you from my heart.

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  20. Fuck the Fucking Cancer Emily! We love you! Keep shining and keep staying strong. <3

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