Always Thinking Ahead

It's been a long week in Michigan but these trips normally are long, but this one especially with the added 13 hour drive! We left Monday evening making a pit stop in Pittsburgh, our half way mark at Sue and Jojo's for a break and then back on the road to Grand Rapids! We ended up making it around dinner time Tuesday evening!

Emily needed platelets Wednesday along with being accessed and the injection which makes for another long day along with sheer exhaustion! The nurse also showed me how to give a subcutaneous injection to an apple to learn how to do it so that I could give Emily her 14 days of GM-CSF shots that she will need!

Thursday was the longest day with MIBG/CT fused scan and then meeting with Sholler! These are the days we dread with never knowing what the results will show!

As always Emily does such an awesome job on her scans with not needing sedation in so long and hanging in for the long scan being completely still! We are so proud of her and being so strong! Mommy felt so bad because Emily doesn't like to put the video goggles on, so when the imaging is not over her head, I hold the iPad over to watch something thru the video! Well the strap broke and hit Emily in the head after having held it for 20 minutes leaving her with a nice bruise on her head, but through that she didn't move, just cried! I felt so bad, I wanted to cry for her and with her! Bad Mommy!!

So results...we waited to meet with Dr Sholler again this morning to update because we wanted her to go over the final scan report from radiologist and also the review from the tumor board..stable! While last month we previously reported that Emily had 3 spots left of the 7, this was not accurate because results were given to us before the final read by the radiologist! While we really didn't want to take back what had already been posted about the 3 spots back from September and people feel we not know what we are talking about, this is also Emily's Journey through neuroblastoma, a childhood cancer, and one day we want her to be able to go back and be able to read this, so we feel the need to report what the scans final report showed! Emily needs to be able to read later in her life what was going on and we feel it is also important to us because we go back and read this from time to time!! Again the scans show stable with all 7 spots still there, some have a mild uptake from last scans, some have decreased uptake and others are unchanged! Right now her VMA is normal and her LDH is normal, so we take this with positivity and move forward! However we are always thinking ahead! Wanting to know what therapies are coming up and what should we do if antibodies doesn't work!

So ahead we move...on to Monoclonal Antibodies CH14.18. Monday being Emily's start date, admission to the PICU! We will monitor her HMA/VMA each month and see if they are going up, if they do plans may change (always thinking ahead). But for now we charge forward with our hearts saying this therapy is going to clear her, we know it! Scans will be scheduled at Helen DeVos in Grand Rapids after either round 2 or 3 of antibodies to see how things are going!

Today Emily received her first dose of GM-CSF in the clinic, which mommy gave Emily her first shot! (ugh not sure i could cut out being a nurse, but i love being my kids nurse if they feel more comfortable) I was a little nervous but at the same time Emily seemed to have a different comfort of mommy giving the shot over the nurse! She sat in the nurses lap crying and the nurse walked me through it and mommy gave Emily her first shot! After it was over Emily said, "that didn't really hurt!" Emily always seems to amaze us, ALWAYS! Gave Emily a high 5 and a hug and she was off running down the hallway back to the playroom playing with the other girls in there! We should be home sometime tomorrow to pick up the GM-CSF from Buford Pharmacy and I will give her daily shots for the next 13 days!

Please send your love and thoughts as Emily endures this next therapy! Monday they will determine if Emily's veins can handle a peripheral line to handle the therapy along with her port, if not Dad and I need to decide what to do (central line? Pic line? Or give her another portacath or remove the one she has and give her a double? Yes the decisions we must make) please also send your love and thoughts to dad and I as we go through this next therapy with Emily!

We did get to meet up with Ezra's parents (Because of Ezra) Kyle and Robin Matthews while waiting to see Dr Sholler! While they didn't have time to film our story about Emily, we were still happy to meet up with them! They hope to make a trip to Virginia to film Emily's story, which would be awesome, as we would love to be part of their 800 stories of 800 children to spread awareness! 800 days is special to them because Ezra lived 800 days! Check out www.nomorenb.org and 800days.org!
Kyle and Robin thank you for stopping in and meeting up with us, it was a pleasure to meet you!

Other Updates

--Emily's Journey will be doing a band-aid drive for both VCU Medical Center and Helen DeVos Childrens Hospital! Both hospitals band aids in the clinic are done off of donations, so if you would like to participate, you can mail your bandaid donations to:
Hubbel Family
PO Box 5383
Midlothian, VA 23112
We would like to have all bandaid donations in by December 3, 2012 so that we can present them to VCU and to Helen DeVos when we make our next trip!

--We are still working on bags for newly diagnosed families beginning this journey into childhood cancer if you are interested in helping with this as well!

Thank you reading our update! It was long, but thank you if you read all the way through it! Lots going on and coming up, but we are hanging in there! We are anxious about Monday, but we will get through this!

Make sure you hug and kiss your kids and tell them how much you love them!