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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Wednesday, July 10, 2013

Quick Update // Wear "Emily Gear" Tomorrow

Today Emily had clinic and MIBG Injection.  Clinic included getting accessed and checking counts.  Getting accessed today was one of those that really made me want to cry.  Julie didn't get to access Emily today and I really wish she did, because she never has any problems, but the girl who accessed her today, didn't the needle in straight and couldn't get blood drawn. She messed with it several times while Emily was sitting on my lap, screaming and crying she wanted to go home and saying it hurt and asking her to stop.  I said we never have this problem, it must not be in correctly.  She stopped and called another nurse in, who looked and felt around and by this time, Emily's anxiety was up and she was over it.  She lady ended up having to pull it out and poke her again, and this time she got it.  Emily was glad it was over, and I was wishing Julie was there to access her so Emily didn't have to scream and cry over getting her port accessed because she hasn't done that in a good long time. Since siblings can't come in, Dad was out in the waiting room with Brianna and later when I told him about it, he said you need to learn how to access her so that if that happens, you can do it.  I do need to learn how to do it, plus it would also help at home if ever needed to for whatever reason. 

All of Emily's counts look good, except her platelets did drop, they dropped from 43 to 32.  She did look like she was getting petechia, but I think the reason it looked like that is because of how much they messed with her port area and with her platelets being low.  MIBG injection was no problem except for radiology was running behind because they had an emergency scan study.  We always hate to hear that, because we normally know what those mean. 

We finally got to meet Molly Adair and her mom, and it was really nice to finally meet.  We have been talking to one another for the past two years and after two years we finally got to meet.  I also got to meet Jason Greer, Tristan's dad.  He knew we were here because he saw the HOPE Magnets on our van.  (Thank you Sue and Jo for making those for us)  I didn't have the pleasure of meeting Tristan, but I did get to meet his dad.  It is always nice to meet other families that you follow along with their journey and actually get to put a face with the name. I know there are a few other families here, but we didn't meet them. 

Tomorrow is scan day, Emily has scans first thing in the morning at 830AM and then we meet with Dr Sholler at 1230PM.  Dad and I were talking about it earlier, we are pretty nervous about the day and what the results will bring, but we have HOPE. We don't know what treatment will look like moving forward or anything like that at this point, but we are just taking it one day at a time.   So make sure you wear your Team "Emily Gear" and share it with us.  You can send it to email at Shannon@emilyhubbel.com or share it on facebook.  

Remember to always hug and kiss your kids and tell them how much you love them.  We will update tomorrow.

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