Today has been a very long day with lots of anxiety!! Emily and/or Brianna crying and just full of anxiety all around!
Results: Scans have appreciably decreased in uptake! The report indicates all of the areas demonstrate decreased uptake as compared to previous examination with no new areas of abnormal MIBG uptake!
This is good news according to Sholler, however I think the report of her catechlomines (HMA/VMA) being normal we thought for sure we were going to see clear in some spots, so in some ways we almost felt let down! However, let me just say we are comfortable with where she is at, no progression but so wished we saw more clearer scans!
The official report is "stable with clinical response"! Which means all of the spots are still visible and there but with less uptake!
Dr Sholler would like for Emily to continue on the trial and do 2 more rounds of chemo and have scans and see where things are then! However this time during chemo have Emily take 3 pills of nifurtimox and then when chemo is done go back to 2 a day!
I have to be honest here, we are now almost into 17 months of treatment , and treatment along with scans, being accessed/Deaccessed has not gotten any easier! Actually it has become harder and harder on us and Emily as well! Emily asks a lot more questions that we have to answer and now she has anxiety and fears over upcoming things that is different for us to handle! But this has gotten harder, we are exhausted from everything and our patience, minds and body can only handle but so much! In Emily's words today, "I'm tired of this!" we are so there with her! Scans really take a lot out of parents and bring out the worst in you, so this day by far has been really hard on Doug and I! The biggest part here is that some of the kids that started treatment around the same time as Emily and after are done with treatment and Emily is still at it or there are others who are not doing well and didn't make it and here our Emily is still fighting! This disease is a beast which is so obvious as hard as Emily has had to fight!
Today Emily also had labs done and her platelets had dropped pretty low from Tuesday's check, so she needed platelets! Her hemoglobin dropped a bit too, not requiring blood but it did drop a bit!
Emily will start round 3 May 21st as long as her counts indicate she is ready to start and count checks next week at home clinic! May 20th we will be celebrating her 5th birthday with a birthday party at home! She actually turns 5 on May 30th! Emily loves mail so if you would like to send her a card, you can send it to her at PO Box 5383, Midlothian, VA 23832!
Sorry if this update was a bit on the down side, but for me I went in today with very high hopes, and I know that Doug did also! High hopes of seeing some clear spots or even gone and all the spots are still there just with less uptake!
Emily we love you with all of our heart and can't wait to celebrate the NED party! We are all tired of this but we still think we can get you there to clear/NED! You are doing such a great job and mommy and daddy are so proud of you!
We head back home tomorrow with Wings of Mercy, an amazing organization with wonderful volunteers who have such big hearts! Thank you! The plane was a bit small to our liking and a bit more bumpier, loud and tight so we were quite happy to land! We had thought about getting a rental to just drive home, but it is just to expensive and I think we all just need to get home!
Well time to end this, we have an early morning tomorrow! Make sure you hold your kids tightly and tell them how much you love them!
I also was praying for clear scans,but glad to hear that treatment seems to be working. It is a tough road that no child should have to take.My thoughts are with you constantly,God BlessReplyDelete
I was praying for clear scans too. I'm so glad it hasn't changed for the worse, though. Always praying.ReplyDelete
Hi there, would love to chat, my 6 year old is on round seven of the nifurtimox trial,ReplyDelete
Hi there, my daughter is on the same trial we are starting round 8 on monday. I would love to chat, compare notes, discuss if you are willing. My email to get started is Lorizucker@sbcglobal.netReplyDelete
our caringbridge page is ariannarosedougan
Lots of love and light for you and your family,