HANGIN IN PHILLY CONT..
I am not sure which order the pics will download in but should be pretty easy to figure out what is what. Three are from this morning with her doing what she does best. EAT.... They have a wonderful system set up here at CHOP. It is basically room service. They don't deliver Breakfast, Lunch or Dinner. When she is hungry she looks on a menu and we call and order food and in about 20 min it is delivered..... how wonderful is that??? And the best part is she can order breakfast all day!! This morning she had a Mushroom Omelet and two pieces of Turkey sausage and french toast sticks and then we had to order a second Omelet and they mistakenly brought her a Pizza with Mushrooms so she ate that while waiting for the Omelet...lol I just called to order her Frosted Flakes and Rice Crispes so she will be eating again any time now.....
I also added a picture of what the room looks like while she is getting the two hour injection of MIBG. She started asking first thing Tuesday morning... "am i radioactive yet?" and asked right up until the minute the injection started.. So Cute. We kissed and hugged and hugged and kissed until they told me i had to move away... trying to get every second in to make up for the days we will not be allowed to touch. If it wouldn't jeopardise the hospitals ability to give the drug here i would be more then willing to risk myself to continue to hug and kiss her....
The final pictures are of her on Monday morning at the Cereal Bar. She loves this place and as soon as she knows we are coming to Philly its the first thing she asks to do. I have no idea why she loves this place so much but if it makes her happy it is more then worth the $5 for a bowl of cereal.....or in her case two bowls... Her first bowl was fruity Pebbles with M & M's and then a bowl of Lucky Charms with extra Marshmallows.
She had a Foley Cath inserted on Tuesday morning that keeps the MiBG from sitting in her Bladder but once again it didn't work very well and leaked from the start. So i had to get up every two hours to change the bed where it was leaking.. They finally decided to just remove it this morning. So things should be better for her. We will still have to get up every two hours to use the bathroom but as least she wont have to lay in it this way.
We will probably be discharged tomorrow sometime. Her levels should be good to go when they come up to check around 10 in the morning but we will have to wait until they can get her in for the MiBG scan before we can leave. This scan is basically just to get a really good picture of her current disease. The levels of MiGB are more then 10 times what they would give her for a reg scan so just like last time we will see a much worse scan then we saw two weeks ago but it is completely expected and nothing to fret about.
I had a very long conversation with Dr. Mosse yesterday and she is very happy with were Eden is at right now and we talked about what is next and there are many options to choose from based on what her scans show 5 weeks from now.
I wanted to ask for prayer for a little girl we met here yesterday. Her name is Melanie and she is 3. She also has Neuroblastoma. She had MiBG Therapy here a few weeks ago and just had her Bone Marrow Biopsy and from what i can get it was worse and today was her CT and MiBG Scan.. I see the worry in her mothers eyes as she waits for the Dr and i know that feeling so well. Please keep Melanie and her family in your hearts and prayers today.