hyho hyho its off to philly we go
We officially have the green light for Philly as of today. Eden went in for her Bone Marrow aspiration this morning and before that she had to have labs and meet with Dr. Nick. During the conversation between myself, Nick and Shelly we talked about her MiBG scan from last week. We didn’t update the Blog on this because things were still up in the air but it was a rough week of waiting and wondering. As soon as her scan is done the techs send it over to a Dr. to look and decide whether or not to do a more in-depth scan called a 3D image and we have always known that them wanting the 3D image is never a good thing because it means they are seeing something they need a better look at. So we waited all day Wed and never heard anything and Thursday morning they wanted Eden to come back in for a rescan of her chest/abdomen area. They were having a hard time seeing anything because her bowels were very full... (She was full of S**t) so by Thursday night Robin called and said they could see something in her Chest/Abdomen area but needed to let Nick discuss it with the Radiologist before anything could be determined. Rourke Spoke with Nick on Friday but we still didn’t know what it all meant to us until today when we talked with Nick and then Dr. Mosse from Philly. Here is what we were told. They can see something but they are not sure it is Cancer and if it is they are not worried about it. They can see one dot basically barely lighting up and it would be very odd that it would be a new spot considering the other areas look so much better. In fact the nodes in her pelvic area are gone and the one in her shoulder is very light and very small.
After speaking with Dr. Nick I received a call from Dr. Mosse and she indicated that Eden is a perfect candidate for MiBG because of the small amount of Disease they are seeing and because she is in such good health right now. So Philly here we come. We will be leaving on Monday the 7th and she will have clinic visit at CHOP and then we will head over to have her admitted and they will start fluids and probably put her catheter in. (She must have this in the entire time she is there to protect her bladder from Radiation) Tuesday morning she will get the injection containing MiBG tracer and Liquid Radiation. Then we wait it out. That is all there is to it and she will be in no pain and there are no side effects except it will drop her counts. The biggest problem they find with this procedure is boredom. Eden will not be allowed to leave her lead lined bed and we will not be allowed to touch her and she can’t touch us.
We will wear a device around our necks to monitor the radioactivity around our bodies and we much keep a chart of those #’s. If we need to touch her or help her with something it is with gloved hands only over the lead lined walls surrounding her bed. She will have to wear hospital gowns that will be thrown away after use and anything she touches must be disposed of using special measures. I am sure by the first day we will be used to all the new rules however I am not sure how I can be in the same room with her and not kiss her. The thought if it breaks my heart as I know I kiss her shiny little head and her sweet little face 500 times a day. .
It is our hope that by Friday we will be on our way home. We need to say a big fat Thank you to Capt. Jack for flying us out and coming back to get us. Aunt Linda and Uncle Jack are two of the most amazing, giving people I have ever met and we will forever be in their debt for the kindness they have shown in our hour of need!