PET Scan Tomorrow

After our scans in Michigan, I haven't updated since....I apologize.

Our last update, Emily had MIBG/CT scan and Dr Sholler said it was stable with some of her disease having a slight uptake and the some of the other spots with a decrease in uptake. There was one spot she was concerned about that quite a bit of uptake compared to the many of the last scans.  So she asked that we have a PET scan at home and have them send them over to be reviewed in Michigan.  Dr Gowda quickly worked on getting a PET scan scheduled and was able to get one scheduled for us tomorrow at 9AM. We haven't had scans at VCU from the last time when we were told that Emily was clear and she wasn't.  Although PET scans are totally different, so we are ok with getting it done here. 

No eating 8 hours before the scans and nothing to drink 4 hours before except for to take any medication that she may need to take. We do not know how long it will take to get the results on these, because we are not sure how radiology will be sending over the PET scans to Michigan.   But once we know, we will be able to update and let you know the outcome.  If the PET results come back Positive, we will be making an unplanned visit to Michigan to get Emily set up on another trial.  If they come back negative, we will just continue with the DFMO as we have been doing.  Please continue to keep Emily in your thoughts.

Overall Emily is doing well. She continues to go to school and enjoy her friends.  Last weekend she had her very first sleep over with her best friend M.  It was really hard for us, we wanted to say no that she couldn't go, but she deserves to go like her dad said.  She deserves to be like the rest of her friends and stay with her friends from time to time and deserves to have a good time. Overall she has been well, but the only issue we have had is she complains of pain in her foot/ankle.  Some days it hurts worse than others and some days it only hurts a little and other times we have to give her Tylenol.  She has been wearing some type of brace on it because it bothers her.  So we will talk to clinic tomorrow to see if there is anything we should be concerned about.

Tomorrow we have to be at clinic early to get accessed for labs, clinic and PET scan. Originally we were supposed to come Friday to see the doctor for labs and physical, but since we will be there tomorrow, we were able to get in with the doctor early  and get labs and physical done.  My dad will be meeting us at the house in the morning and going with us for the labs and PET scan.  Thank you dad for wanting to come with us.

Oh Emily and Brianna didn't miss the father/daughter dance, it has now been scheduled for March 27th.  Emily is so excited that she will be able to go and this will be her first time going to the dance. 

We will update more once we know more.  Remember to hug and kiss your kids and tell them how much you love them

Scan Update

Long couple of days but they are behind us now and we are heading to spend some time with Doug's family for a little bit and then head home.  Emily was only accessed once yesterday but we made sure that didn't happen again. Emily did awesome on her scan sitting very still and not moving but she always does. Today was the first day that she wore the video goggles the whole time watching the movie Frozen.  And she only asked one time during the scan how much longer! We are not biased or anything because she is out kid, but she really is an amazing. People meet her and they fall in love with her because she is just one loveable kid. 

After scans we had lunch with my dad and then went up to clinic and waited. We waited what seemed like forever in the waiting room since they were waiting for the scans to be read.  We were both pretty nervous with getting results bc of the wait time and worried after seeing the scans come across the screen from the MIBG. 

In April it will mark one year that Emily has been on the DFMO trial with such a great quality of life!! We want this to continue. She continues to go to school, enjoy her friends and in April she wants to join cheerleading through her school.  We want her to be able to do all these things and in May Emily turns 8!  Through the last 4 years of treatments, it's these little things seem so big!! She deserves it!!!

Overall scans are stable with some of her spots having a mild uptake and some of her other spots having a mild decrease in uptake. There is one spot on her back between T5-T7 that Dr Sholler has some concern about that seems to have a bit more uptake than many of her previous scans. Emily does not have any new disease which is definitely a good thing, but Dr Sholler would like Emily to have a PET scan done at home and have the scans sent to Dr Sholler to review. We will see about getting these done next week, because we would really like to know where things are.  We will get with Dr Gowda tomorrow and see what he has going on with getting this scheduled. If they are negative, we will continue on the DFMO and if they are positive we will need to get with Dr Sholler and talk about doing something else. We did talk with her about the velcade DFMO trial so we do have something in mind that we could possibly put her on, which would require us to make another trip to Michigan to start on this. Dr Sholler would like us to continue with what we have been doing but said if the PET scan came back positive we need to change some things up. We also talked about doing a bone biopsy on one of her tumors which could get more information about her tumors and see what is going on, but that would probably be something that we talk about doing for next trip. This biopsy would be like doing a bone marrow biopsy and would require sedation, but it would give us make up of her tumor, but it would not give us make up of her other tumors. Dr Sholler was very happy with how well she looked and was doing and her LDH and urine markers were all low. So we are happy with stable and we are hopeful that her PET scan remain negative. Once the PET has been set up we will update so everyone can send lots of love for Emily and thoughts!!

Thank you to my dad for coming and being there with us. It really meant a lot to us and honestly took off a lot of the anxiety and stress that we normally feel when we are there for scans.  The girls really enjoyed having you here to spend time with us.. Thank you! We hope you have a safe flight back to VA where they are calling for more snow and the schools are closed today. We are hopeful in many ways that school will be closed tomorrow so that the daddy/daughter dance that was cancelled last week and moved to this weekend will be cancelled and moved that the girls can go with Doug to the dance. 

We will continue to keep you all up to date on how things are... Thank you for continuing to follow along our journey. Remember to hug and kiss your kids and tell them how much you love them!

Today is Scans

We made it to Michigan Monday evening by dinner time. Our drive on Sunday was an icy mess most of the way and it was kind of crazy to see snow from our front door at home until we arrived in Michigan!

My dad made it to Michigan by 1130 Monday evening due to some cancelled flights because of weather! 

Yesterday Emily had clinic to be accessed for labs, urine markers, physical and then injection. Hearing test was cancelled since we just had one 3 months ago and we only need them every 6 months on this trial. Labs look great as they have been and physical went fine! Nurse Practioner is happy with how well she looks and we are too!  Injection went fine and Emily wanted to be deaccessed since we are at a hotel with a pool and she wanted to get in the pool. After the injection was done the nurse wasn't paying attention and didn't put heparin in her line to close it and deaccessed her and realized what she did. This meant Emily had to be accessed again only to get the heparin and be deaccessed. Needless to say Emily was pretty upset as was mom and dad. Doug had to leave the room to not say anything nasty but the nurse really needs to pay more attention Emily should not have been accessed twice like that.

After leaving clinic we had lunch and hung out with my dad for the rest of the afternoon! The girls played in the pool for a little while, ran some errands and dad took us out for dinner. Dad, thank you for coming and bring a part of this journey we are on. We thank you!

Today is scans, so don't forget to wear your Emily gear or pink and purple!!  We meet with Dr Sholler after the scans. We are ready for this to be over and head on continuing on DFMO. Please keep Emily in your thoughts for stable scans!

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