Wednesday, June 8, 2011

Emily this morning riding indian style on the  IV Pole.

Its Wednesday night, and we are two days into Chemo and tomorrow at 1230PM, Emily will have only 24 hours left of Chemo of Round 6 and Emily should be released by no later than 3PM on Friday, as long as all goes well.  

Tonight I am laying here with Emily rubbing my arm and watching TV. She had a good day but by 3 pm she said her stomach was hurting. She hadn't had a BM in 2 days so I was thinking maybe it was that.  By 6ish she had her Zofran and a hour and a half later she was eating chicken noodle and then got sick.  I hate watching her get sick, but she seemed to feel better afterward. Jessica and her "friend" Seth came by to visit about the same time Daddy and Brianna got here and it was right before Emily got sick.  Emily had some good laughs with daddy before he left to take take Brianna home to go to bed.

We still hadn't gotten news of what the pathology was from Emily's surgery so when I emailed Dr. Gowda he said he hadn't heard anything, so I emailed Dr. Mattei and he later in the day he replied with the report and also asked how Emily was doing.  That is amazing.  I replied and told him I was very happy that we found him and that we are very happy with what he did and how well he took care of Emily.  I told him the only thing that we regret was not getting a picture of him and Emily together. He even replied to my thanking him and said Thank you for your kind words.  I am honored to be a part of "Team Emily". and to please tell her he said HI!  So, tell me friends and family is that not an amazing man or what?  The pathology report came back showing that the Chemo is doing what it is supposed to do.  The report indicated, "The current specimen, post-chemotherapy, shows maturational changes typical of treated neuroblastoma, with fields of ganglioneuroma, ganglionueroblastoma and neuroblastoma differential."  The only information that Dr. Gowda didn't see was the percentage of what was neuroblastoma and what was ganglio.  So he is going to see if he can get that information.  We are thankful that Dr. Mattei was able to get all of the tumor and Emily was safe and sound and she is doing great today post surgery.  I am anxious to get these post Round 6 scans done to see if she is NED (No evidence of disease), honestly I'm pretty nervous about it but Emily is kicking butt and I know she will be just fine, it is just getting through all of this. Dr. Gowda said this doesn't change the protocol, which we didn't think it would, but that it shows that the chemo is doing exactly what we want it to do.  So, that is positive. Doug and I are confident that Emily will beat this, however I can tell you that I am still nervous about it all!  

Where are we going after Round 6?  Emily has to go through all of her scans, we have a 24 hour urine test, she also has to have her kidney check, EKG, hearing test, bone marrow aspiration and everything else. So she has a busy schedule about 2 weeks after this chemo and our hope is that 4 days after she is finished she doesn't land herself back in the hospital for 9 days like she did before.  And guess what? When Emily is released on Friday, that will be the end of Round 6 and end the Induction Phase of the protocol.  We will then move into the next part of the protocol after the scans and be in the Consolidation part of the Protocol. Consolidation part is where she will do the Stem Cell Transplant which is receiving her own stem cells (autologus) after 5 days of extremely high doses of chemo and that will all be done in the BMT unit of the hospital so it will be a different location and nurses than what we are used to.  So, we are not far from that, but we have a lot going on in the next coming weeks.

Thank you to Child Life for wrapping a present for Emily's birthday and bringing it to Emily. It was really sweet to think of Emily for her birthday even though she wasn't in the hospital.  Thank you so much. Belle the Princess Doll, such a cute doll and she evens sings.  Dad and I told her she will get to meet Belle in Disney World when we go.

Closing out for the night so I can do a little bit more work tonight.Goodnight and make sure you kiss your babies.