Our stomachs are in knots, our hearts are heavy and our fear is high!
It feels like in the past week and a half we have been on a major roller coaster ride one where when it rains it pours! Ups and downs and never knowing when it will just stay level.
Emily had clinic today and the visit didn't go as I thought it would. So much so that after clinic I asked my boss if I could work the rest of the day at home! I was just expecting a normal visit to check counts and then take Emily home and then head to work. The past few days Emily has had some (4 to be exact) red/purple nodules develop on her skin on different parts of her body. I explained them to the nurse and she told Dr. Gowda about them, who came and looked at them Emily says they don't itch, they hurt when you touch them. Some of them since we have been watching them have gotten bigger and some are lookinh darker! Dr. Gowda also looked closely at her leg where it has been hurting to touch. She is still complaining it hurts to touch, but other than that, she is walking ok. He thinks that the leg hurting, the headache and ears could just be from the Zometa, because it does cause bone pain, but it still makes him wonder some. He is showing some concern about the 4 spots that we showed him this morning. As of yesterday she had 3 spots on the skin that are redish purple and a new one showed this morning before we left for clinic.
Dr Gowda said this could be one of 3 things...
1. an infection that is causing the bump and once her counts go up these spots should go away (but he said normally if it was an infection a fever would be accompanied with it)
2. Blood clotting and bc of that it is causing bumps
3. Progression...these spots could be what they call "blueberry muffin" spots!
He said all of these could be painful to touch!
Our minds are all over the place right now! Emily didn't need any blood products today so Dr gowda took us out of the fish bowl and into a room! This really scared me, but he wanted to get a closer look at Emily's spots and also see If there was any others! He also said that he has requested an Mibg scan next week so we can see what is going on and showed me what a "blueberry muffin" spot lioks like! He said if the spots are gone we can cancel the scan but he wanted to have it scheduled! Elaine, our nurse also drew more blood to do a d-dimer test! This is to check for blood clotting and he would be able to see by the number if that is causing the bumps but this was the lowest of concerns on his list but he also couldnt put it aside!
We know that Dr Gowda is concerned because he said before I left if you have any concerns or any other spots show up or problems, please email me directly and I will call you!
Dr Gowda emailed tonight and said the d dimer was negative and that the Mibg had been scheduled for Tuesday and Wednesday! No affirmative time until we hear from radiology! He did email Dr Sholler this morning to advise her of what has transpired at this point and that he had requested for a Mibg here in va unless she wants us to come there! We have not heard a response back from her yet!
So our biggest concern is that these spots are NB! We have taken Emily back off the nifurtimox for now because if she is progressing they will pull her from the trial anyway! We are stopping everything else until we know what is going on!
If there are any NB moms, dads or grandparents that have had any experience with this, please let us know! We are beyond scared and worried and the anxiety is taking the best of us!
This brings our talks of where she would go for treatment if this is our worst nightmare for the 3rd time! Our hope is that these spots go away as her counts go up! Today WBC was only 500 and her ANC is only 200 so we were told Emily is still neutrapenic so to still watch for fevers and because platelets were 20 to watch for any bleeding or bruising!
Please send your love and thoughts that this is just an infection! Remember to hug and kiss your kids every night and tell them how much you love them because you never know when things can change!
We will continue to keep you updated! Im sorry if we don't answer calls or texts but right now we are just taking all this information in and trying to understand! We have no idea where things can be next week!