The Hubbel House!
The to Michigan was short yet seemed so long! We are in the plane now flying home and they are aware of some weather in our home area so we may have to detour! (sorry im updating via ipad so if there is spelling issues, I'm sorry) Hopefully no problems but we are still so thankful for Wings of Mercy and what they do for us and other families! You guys are amazing!!
Thursday turned out to be a pretty long day waking the girls up early, letting daddy sleep in since he had a hard time sleeping Wednesday night! Breakfast and playing and getting ready for clinic! The difficult part about Brianna ("Anna" is what she calls herself) coming along is she is not able to go into the HemOnc clinic because of their rules, but at least we are all together! Emily had her blood drawn and a complete physical done by Dr Sholler! Emily's weight is 28.2 so thankfully she is continuing to gain weight! Dr Sholler is very happy with how Emily is looking and no major side effects!
We went and had lunch and got a call from adult radiology that they were running pretty behind should have had scan at 1 pm but sedation was so far behind that they would hope to be ready by 2-230 pm! Brianna was exhausted as was Emily and then we got a call from clinic that Emily's platelets were low and she would need a transfusion! We thought they were coming up since Monday she was not needing anything but that didn't happen! Emily passed out during transfusion since she has to have Tylenol and Benadryl now because of the breaking out she had last week!
We were late to scans but they were waiting for us! Emily is so amazing to lay completely still through about an hour and 10 minute scan and for the first hour she cannot move at all because of the CT needing to be fused to the MIBG! Daddy and I are very proud of her for being so strong and doing what she needs to do!
Scans are currently showing STABLE, absolutely no change from the last scans! We are upset to know there has been no change but happy to know she is not progressing! Dr Sholler would like for us to move forward and do the last 2 rounds of this trial and then see where we should go then! The thought is antibodies (which she is going to research in the next month which one would be the best for Emily) and possibly maybe doing a biopsy of the spots and seeing what we are messing with! Dad also talked to Sholler about melatonin and what he read about it! Melatonin is a natural medicine and most commonly used for people who have troubles calming themselves enough to fall asleep! However some research has been done on it that taking it shows it works with cancer and one of those cancers specifically being neuroblastoma! Guess what dr Sholler knows all about this and even said she knows many NB patients that use curcumin which also has some great research for neuroblastoma! Dr Sholler is amazing and does a lot of research and not only about medicines but also about natural/homeopathic products! She recommended if we wanted to try it to move forward with starting it Sunday before the next round starts! She also recommended having Emily start taking 3 tabs of nifurtimox on Sunday through Saturday the day after last day of chemo! Dad and our are really thinking about doing 3 tabs throughout the whole 21 days of the round! Dr Sholler also recommended Emily start Zometa which is a bone strengthener and also been known and tested to help with metastasis in the bones! So Emily will get this on the first day on the next two rounds and then monthly after that!
So Monday starts Round 5 of nifurtimox trial (actually round 13 of actual chemo's that she has received) and its a possibility she may need platelets again come Monday! We did talk about platelets with Sholler and we will review them after this round and see what happens with them and what she may need to do!
By the way, if you have kept up with this post all this way it means so much to us and sorry for all the talk through this post but really wanted to let everyone know where things where and how they went! Emily does have a donor number for va blood services so once we get home I am going to get with our good friend Mary Ann Waters (daughter Abbie who passed away in April of last year, Facebook Abbie's Peeps) and she will help us with getting a donor session in Emily's honor set up! We hope that you will help because we understand platelets have become spare here and there at our home hospital by reading someone else's update!
Thanks for reading and hope for the next 2 rounds to be as easy as round 4 was with no problems and no fevers and no inpatients stays! And continue to hope for clear/clearer scans when we return back to Michigan!