Stable Scans

Once again scans are stable!  Two of Emily's spots have an increase of uptake and one of the spots is gone. Dr Sholler again offered if we wanted to do the other DFMO trial with chemo we could, however we decided to keep Emily on the Conpassionate Use of DFMO trial she is currently on. There are no new spots and none of her spots are bigger, so we will take stable!

While we continue to long for NED and to hear those three words No Evidence of Disease that so many other families hear , we are happy that Emily continues to thrive! She has been complaining of back pain when she bends over, but we are not seeing anything to accompany that pain. Emily can go to school and have friends and enjoy things, so we are happy with that. She wants to be done with treatment and we too long for her to be done with treatment! 12/23 marks 4 continuous years of treatment with no stops and she deserves to have this one day! We had hoped we were going to hear those three words though because we wanted to have a huge party to celebrate all that she has been through!! One day we will hear those words, but for now we will continue to hold her hand and fight with her!

She heard her friend Molly, that we had lunch with, was done with treatment and that she was NED for 34 months. She said she wished she was done with treatment like her but that she was so happy for her and that she deserves

 it. Emily always amazes us with how strong she is and how she is happy for her other friends!

So for now Emily will continue on the DFMO trial and we will come back to Michigan for scans in late February or early March! Dr Sholler is happy with how she is doing so we wll continue on. 

Please continue to keep Emily in your thoughts. Also remember that we are still collecting bandaids until December 15th, so send them on!! I don't think we are going to make the 5000 boxes this year but we are happy with how many people have helped and continue to do so!

Remember to hug and kiss your kids and tell them how much you love them!!

Emily Update

Thankfully no fevers overnight. She was 99.5 at one time but it came back down! She seems pretty sad but we are thinking she is just ready to get home to see her dog and be home with all of us...Her ANC is still 0 today but since no fevers they will let her go home sometime this afternoon. Her platelets dropped again, so she will be getting a platelet transfusion and then wait a bit after and check them again to make sure they go up. I understand they also want to see if her body has built an antibody against platelets since they keep dropping, but we are hoping that it's just from her counts being low. Her hemoglobin dropped also but they would like to wait on that and see how she does.  Also Dr Gowda emailed and asks that we stop all chemo until her counts have recovered!                         

Still see quite a bit of her on her pillow and clothes, such a bummer that this has happened again, 4th time of losing her but. Again when she starts to notice we will talk to her about it!

Please continue to keep Emily in your thoughts and sending lots of love! 

#emilyhubbeldotcom

#emilysjourney

#neuroblastomasucks

#emilyupdate

Exhaustion / Long Day

We got into Michigan around 9 last night and was thankful to be in a room at the Renucci House with a kitchen. Had a late dinner with Emily working on homework and then off to bed. Brianna and daddy aren't feeling well and I am with a sore throat but not other symptoms. (Thankfully!)

   

After a late night, Emily had a long day in clinic. She was accessed and thankfully on the first time. By time labs were back, it was already past time of going to get MIBG injection, so they were coming to the infusion room. Emilys hemoglobin took a huge drop from 10.9 on Thursday of last week to 8.8 today. WOW! Platelets were 29, so she needed platelets.  Just an extremely long day. Today for the first time Emily played with the childlife here in Michigan and she had a good time, but as many times as we have been here Emily has ever played with her. So that was nice. After a long day, we ar back in the Renucci House and Emily had a snack and she is already asleep. 

Tomorrow we have another long day. They want to check he counts again and MIBG scan is tomorrow and then we meet with Dr Sholler.  Please wear your Emily gear, saying a thought, love, prayers for stable or even better, 

Anxiety is awful here and dad and I have lots of anxiety.  Ready for this to be over. 

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

  

Oh, we also had a very wonderful person start a gofundme.com for Emily. If you would like to help out that would be awesome and very helpful. Here is the link: http://www.gofundme.com/emilysjourney

Rollercoaster Ride

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!