Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Thursday, December 24, 2015

Dear Emily From Daddy

To Emily from Daddy,

Hi sweetie, I know you have been looking at your blog lately, so I thought I would write you something to remind you of how special you truly are. It has been 5 years since the doctors had told Mommy and I that there was something going on in your belly.  I am not really sure how to tell you in words about that day, but it was a very crazy time for everyone. Everything that you have been through over the years, you always have done it with your beautiful smile.

I remember when you asked me, “Daddy have you ever cried?” Yes, I have a bunch of times when I feel sad. when you didn’t feel good, when you were not able to do things the others kids would do. When you were sad inside, I was very sad too. But these days my tears are happy, when i watch you walk Brianna to class, when you received student of the year, your first cheer practice, when your team won the County Battle. Watching you grow up and become the little lady you are, how you are loving and caring to your little cousin Jenna, the bond you have with Aunt Tricia, the loyalty you have to your friends, and your passion for the things that are so important to you. I could go on and on!

I have learned so much from you over these past 8 years and I am very proud to be your Dad. 

We are so lucky to have someone like your Mommy in our lives, how devoted and caring she is to our family & whenever you didn’t feel well she was always an arms reach away. I just want you to know that no matter how old you are, how good or bad things may be or the path in life that you choose to take, Mommy and Daddy are right behind you. 

I just hope someday that you will be half as proud of me, as I am of you.

I love You very much, Merry Christmas


Wednesday, December 23, 2015

5 Years Diagnosis Date

 It's hard to believe that today marks 5 years from the date that we actually had a confirmation that Emily had cancer.!  Emily was diagnosed on 12/23/2010 with stage 4 high risk neuroblastoma. They had the hardest time actually making the diagnosis just because they felt some things were different than others, but New York Sloan Ketterling confirmed it was the correct diagnosed.

Doctors never gave us a promising outlook on Emily's diagnosis and said she only had 20%! To look back now I don't know if we ever knew that 5 years later that today Emily would still be here with the grim outlook on her life that was given.  We still worry that although we are at the 5 year mark that dad and I could be going through more grueling treatment with her and she not have more Christmas', other holidays and special events to enjoy together as a family. Emily deserves to have another 5 years and another 5 years after that.

While she has never reached No Evidence of Disease, her dad and I are happy with stable, but we still wait to hear those words so that it could means in hopes it could bring down some of our worries of knowing it can come back.

If you don't know Emily, she really is an amazing child! No her dad and I are no biased by any means, we just know who she is and what she is all about and that heart she is is above and beyond most children her age I know. As an 8 year old she knows more than most would her age, and she has lived and gone through more than most adults have.

For the last year and a half Emily has been on DFMO and has lived a stable life, living life to the fullest, attending school and even did cheerleader this year for the first time! We couldn't be more proud of her. We continue to visit the clinic on a monthly basis unless something comes up where we may need to make ER visits.

Today Emily is looking forward to Christmas with her family and happy that she is not in the hospital. She continues to think of the other children who are in the hospital fighting the fight! This post could go sad or happy and honestly I would rather see it happy because if you look at Emily she has that beautiful smile she always has!!

Please continue to keep Emily in your thoughts!!

Happy Holidays!

Thursday, August 27, 2015

Michigan/Scans News

Wow...I haven't updated on Emily's blog in so long since I tend to update Facebook, so I apologize. 

Although Emily remains in treatment, we went 5.5 months this go round with no scans. Emily was able to enjoy her birthday, end of school year in 2nd grade and enjoy the summer with camping and lots of pool time.  It was nice for her because she didn't have to worry about the hospital except for monthly with physicals and labs at our home hospital.

So when we received the email from our nurse, Julie, in Michigan that it was time to schedule scans, the anxiety began.  We really worried with lots of anxiety and fear of what these scans would bring. So many of our friends that we have met, and those we haven't were dealing with relapsed neuroblastoma or losing their battle to cancer. So we really had a lot of fear.

Sunday, August 23rd, we were scheduled to leave. We did get to leave but things obviously didn't go as we had expected it to go. We left around 1130am with the camper in tow to stay at the KOA in Allendale, MI. Our truck had decided that it had other ideas. We made it to Northern VA and the truck decided to overheat. Not exactly what we needed when we have a 1500 miles round trip. We tried a few things to see if it would get the truck to cool down but it didn't happen. We decided we needed to be safe rather than sorry and to make it in time to MI and not worry about sitting on the side of the road with family and worry about getting hit by oncoming traffic, to take the truck and camper home. We redlined it a few times the way back home, but as long as we were moving the truck didn't overheat. We made it back home at 430pm, while dad ran to get AC stuff to put in the van, I unpacked the camper to pack the van. We did that in record time and were back on the road within an hour. We made it to our friend Sue and Jojo's house by 130 am to sleep, get up, eat breakfast and head the rest of the way to Michigan. Obviously we had to find a place to stay last minute, and stayed at Country Inn and last minute costs more, but we made it there Monday evening by 8pm. 

Anxiety and fear was awful, not only for us but also Emily. She did not want to come to Michigan and asked several times before leaving if we had to go. Emily too had a lot of anxiety this time.  Tuesday we got to see Julie, Emily's nurse, who accessed her with no problem... Did I tell you guys that Emily normally sits in our lap and holds our hands while she is getting accessed. She still sits in our lap but no longer holds our hands. Man she is getting so big, it's crazy.  Dad and I are so proud of her and all that she continues to accomplish.  She had her labs done, and MIBG injection done all with no problems. Her labs looked good with her LDH normal which is obviously we want.  She had her hearing test done and thankfully hearing test remains stable. Just the high frequency hearing loss that we have had. So far she has done well in school without needing additional help with the high frequency loss, but we will keep a watch. Emily's urine results also remained normal, which was another positive and we just hoped that scans on Wednesday stayed that way. 



Scans started and dad and I at watching the screens looking for anything, and while we saw a few things they didn't look as bad as they had on the past scans, we still worry until we get the final results. Dr Sholler doesn't normally have clinic on Wednesdays so she made an extra trip to come and see Emily and go over results. Both Dr Sholler and Shannon (the nurse practioner) were very happy with how well Emily looked and how she was doing. Dr Sholler gave us thumbs up for scans, and we looked over them. In easy terms, Emily remains stable with appreciable decrease in the femurs and the finale report states:
1. Overall appreciable decrease in the amount of MIBG uptake particularly in the spine, pelvis and proximal femurs.  That decrease on the spine is seen at T5 through T7, T12, L1 and L4
2. The activity in the head appears relatively stable.
3. No new areas of abnormal increased uptake.
We have never heard appreciable decrease, so hearing those words were freaking awesome.  No new disease is even better.  And no areas showed more uptake which in the last few scans we had some areas showing increase In uptake.  We will take take this and are very happy with this. 

Dad and I asked if we could move to 6 months scans and come early should there be anything we are worried about. Dr Sholler agreed with this and said we didn't have to come back until February 2016!  Also since we are on the compassionate trial of DFMO Dr Sholler can make these calls, and do that. She felt that Emily on the chemo agent DFMO she is doing well. She also said that she felt like our situation is much like another child with neuroblastoma! That is such positive news!  Emily will continue seeing Dr Gowda at our home hospital monthly to check counts, do urine levels and have a physical. 

So today we left the hotel and are heading back to Sue and Jojo's for the night. Tomorrow we will leave and do something fun for Emily! She deserves it, this scan was especially hard for her. Dad promised her when she was first diagnosed that we would take her to Sesame Place in Philly, so tomorrow he is making that promise come true and taking her!! So if any of you know of any specials deals or anything going on at Sesame Place, please email and let us know, at shannon@emilyhubbel,com. 

Thank you for continue to keep up with Emily's Journey and reading and for continuing with all the love and thoughts.

Wednesday, March 18, 2015

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

Thursday, March 5, 2015

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!

Wednesday, March 4, 2015

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!

Sunday, February 22, 2015

Scans in a Week

Scans have been scheduled in Michigan!!

The girls have been out of school for the past week due to the snow storm we had in Virginia but they are going back tomorrow. 

Friday daddy is taking Emily and Brianna to the daddy/daughter dance. Emily is excited to get all dressed up and dance the night away with her dad! Can't wait to share pictures. Saturday is grandads birthday so we will be doing then and packing. 

Sunday March 1st we have our first leg of our trip to Pittsburgh and then Monday drive the rest of the way to Michigan. Monday night grandad (my dad) will be flying in to Michigan and staying with us to be there with us as we go through the stressful time of scans.  Tuesday Emily has labs, injection for MIBG and hearing test and then Wednesday we have scans and meet with Sholler to go over results! 

Stress is certainly among us as scans are coming close. Emily has been doing well and we hope that continues to mean that she is stable as she has been. Please continue to keep Emily in your thoughts for stable scans.

Don't forget to wear your Emily Gear and/or bracelets and if you don't have that wear pink and purple (Emilys favorite colors). If you think about it share them with us we love to see the Emily love!!