We are Home! With an Update

We are home today from Michigan. And oh my was it so cold there.  So cold that it hurt to even go outside. I'm sorry for not updating during the week, but it was a long week.

Not even in Michigan a day and Brianna starts throwing up Sunday night and is very exhausted. We had hoped it was random and just from the traveling, but by 6am Monday morning Emily wakes me up and says mommy my stomach hurts and I feel like I'm going to get sick. Poor thing, she had it pretty bad on Monday. It's horrible watching them getting sick and having no energy... Watching Emily get sick, only made me think of the chemo side effects. Brianna slept all day, as did Emily in between getting sick.  Dad made the run out to the store in the cold to get us food and hopefully something that the girls would eat. We were hand washing like crazy, because dad or I didn't want to get it and just pass the cycle over again. Unfortunately dad got it yesterday too. I felt so bad that he got it too. So far mommy has been in the clear!!

Clinic on Tuesday Emily ended up having a pretty long day in the clinic.  Emily was needing a bolus of potassium and sodium from getting sick her electrolytes were all out of whack. She also needed platelets since they were 23. Hemoglobin had also dropped a little bit from the week before too. 

Emily handled her MIBG scan on Wednesday pretty well, just had a hard time laying there completely still for a little over an hour. She said it was making her head hurt, but she did it and we are always so proud of her.  It's always amazing watching her and how she handles this.  Emily was on a low carb diet in preparation for her PET scan the next day. She really had a hard time with it, because she likes to eat bread and lately her organic hot chocolate. By Wednesday night, we had made dinner and Emily's face was pale and she was saying she didn't feel good.

 

Thursday Emily had her PET, and true Emily style, it always turn out there is always something. We walked over to the PET scan (daddy was completely exhausted and feeling horrible yesterday) and Emily was very lethargic. She couldn't hold her head up and couldn't keep her eyes open, her body was very floppy, it was kind of scary. The nurse checked her glucose and Emily's glucose was critically low she said. She said it was too dangerous to do the scan right then and that Emily needed to drink all of her apple juice and come back at noon. She drink it all and thankfully by noon, she was starting to come around. Her glucose level was just a bit under, but enough to get her scan. Emily did well waiting the hour from when the glucose was injected until aft her scan. Finally by 2 she could eat. 

Dad still didn't feel well by time we had to meet with Dr Sholler, but he made it to meet with her. Thankfully today daddy is starting to feel better but still under the weather.

I know everyone is waiting to hear results and at this time they remain STABLE with no change. We are happy with stable, but honestly we always continue to hope for more. We know it would kick her off the Texas trial if she were to become clear, but we still want to hear those words for our girl. Neuroblastoma is a beast and it can come back with a vengeance and we know this, so we keep hitting it.  We keep on keeping on. But honestly, over 3 years of fighting a disease that has progressed twice during treatment, we only hope to hear those three words, and that one day we can put her on the DFMO to keep her clear. But we are not there.  Dr Sholler said, "There is certainly still disease there, but keep doing whatever you are doing because it is keeping it stable."

So we are home...our nurse at VCU had been working on getting the Metronomics medicines approved by the insurance while we were gone, so she could start her new trial when we got home.   The four drugs included in this trial are etoposide, cyclophosphamide, thalidomide and Celebrex. Etoposide and cyclophosphamide would be given for 21 days and then thalidomide and Celebrex would be given the next 21 days. After these two rounds, we will go back to Michigan for scans.  The medications are quite costly even with insurance, but thankfully they were approved nonetheless, because without it would be awful. Only bad part is they are speciality medicines that have to go through Curascripts to be mailed again. We will need to meet with Dr Gowda this week sometime to go over this and how it will be administered

The hope with these new medicines is that they keep her stable obviously, but also help her platelets back up so that she can be ready for the Texas trial when they are ready for her.  We know it can supress the bone marrow resulting In her ANC and WBC dropping but shouldn't effect her platelets.  We do know every child is different with side effects, so hopefully Emily does well with it. Texas has everything that they need, Emilys bloodwork and all the paperwork. I heard from one of the doctors in Texas and it looks like that may not be ready for Emily until May or June. Anyone that lives out in that area, we are looking for the closest campground to Texas children's, if you know of any. We are wanting to get prepared.  So we continue to wait to get into this trial and we hope that the metronomics does what we intend for it to do. I will be honest though, with the new treatment plan, and removing Emily from the Avastin, I'm nervous, we are nervous. We can't ever go back to avastin, so it makes it hard because you just don't know what treatment will work.  There is no guarantee that anything works, so we really don't know if this will work. All we can do is HOPE! We also know she takes tumuric on a daily basis and one of the new medications she will have to stop the tumuric because it will cancel out that chemo.

Thank you all for your #snowpics showing your support to Emily and continuing to follow Emilys journey and being there along with us as we travel this road. Make sure you hug and kiss your kids and tell them how much you love them, no one can guarantee tomorrow!

Just a few photos that you all sent in, seriously they were awesome and really meant a lot to us.  thank you!!