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

Emily's Journey's Most Recent Facebook Post

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!!

Friday, January 9, 2015

Clinic and Echocardiogram

Update: Emily had her monthly visit with the hospital! It's nice she doesn't have to visit often. 

Yesterday she had her scheduled echocardiogram to see how her heart was looking after 4 years of treatment. We knew we would have to wait until meeting with Dr Gowda today to see how it went. After her appontment yesterday she was extremely exhausted so dad picked her up and she spent the rest of the day with her dad and taking a nap!

This morning she had clinic and her monthly physical with Dr Gowda. We went over results of her echo and he was very happy with how it looked from 2 years ago so that is great! She has her port accessed and counts checked. She also gave her urine for HMA/VMA markers! Dr Gowda was happy with how she is doing and is happy with us continuing on what we are doing!  She has complained of back pain, feet hurting and tummy pain here and there but nothing in her counts are showing issues! Results for HMA/VMA should be back in 7-10 days!

Overall Emily is doing well and enjoying school and her friends. She is loving that she does not have to visit the hospital as often and we are too. However with the flu we are watching closely because with a fever she needs to go Inpatient!

Hoping everyone is enjoying their New Year!

Thursday, January 1, 2015

What We Learned in 2014

What is a parent? A parent is a caretaker of the offspring in their own species. Are all those that have children set out to be parents/good parents? Not at all, because a parent is one who gives warmth, love, attention and protects their children no matter the circumstances.  

What is a mother? "A mother is someone who loves unconditionally and places the needs of her children above her own, on a personal level, and not only with words, but also actions. A mother is someone to shelter and guide us, to love us, whatever we do, with a warm understanding and infinite patience, and wonderful gentleness, too." (unknown)

What is a father? "A father is someone who wants to catch you before you fall but instead picks you up, brushes you off, and lets you try again. A Dad is someone who wants to keep you from making mistakes but instead lets you find your own way, even though his heart breaks in silence when you get hurt. A dad is also someone who holds you when you cry, scolds you when you break the rules, shines with pride when you succeed and has a lot of faith in you even when you fail." (unknown)

Doug and I have always tried to be the best parents that we can be to our three girls and we would do anything that we need to do to take care of them.  We always place them above our own needs and take care of them before we take care of ourselves.  While I think that Doug and I could be even better parents to our three beautiful girls, I know we have gone above and beyond, yet strive everyday to be better parents than yesterday.

Over the last 4 years since we have traveled this journey with Emily, we have struggled with lack of support from the people that we had expected to be there the most.  We have had a lot of help from many people and many of those are people we had never met, friends/friends of friends, and our community. We are also grateful to Jessie’s Father for being the great Dad he has always been, being there to pick up and take Jessie during the weeks when we have to travel or take Jessie to her appointments when we are not able to.  We are thankful to close friends who have been there to help when things are needed, and family who have been there to help as well. But the help we are talking about is just moral and love support from parents.  That has been a huge struggle because when you are going through something like cancer with your own child, you not only have to support your own child through something tough, but you also have to support yourself.  Most of the time taking care of yourself normally comes last and while that is ok, sometimes you just need that shoulder, or love and support from your parents too. We struggled a lot when we would go to clinic and/or the hospital and seeing other cancer families having the love and support of their parents and sometimes even grandparents there for support.  There is one family in particular that I can think of that lives in Texas and the little girls grandparents live over 5 hours away from them and the little girl has to travel often to Michigan.  So many times this mom has (little girl’s grandparents) left her own husband at home and stayed with her daughter and granddaughter in Michigan to be there to support them with love and anything else that they need.  There have been so many times that Doug or myself have sat in the hospital alone with Emily, and not had any support from anyone.  We didn’t need help with our girls, sometimes we just needed that extra love and support. And honestly if we just had someone sit there and not say a word it would have meant the world to us, but that was never the case.  A majority of the time it was never offered and Doug did so much traveling back and forth from the hospital to home to take care of all the basic needs at home and to make sure we were fed and had clean clothes at the hospital. There was never much help at home or the hospital but Doug and I always handled it and took care of what needed to be done.  It was exhausting, but when it is your child you will go to any length to make sure they are happy and have what they need and Doug always did that. Doug has always gone above and beyond to take care of all of us and go that extra mile. For the past few years Doug has been working nights, as I work during the day. This is the best way for us to make our situation work. We are very fortunate that we have the companies we work for that support our Family through this journey and friends like Sue and Jo who take time out of their lives to drive over 6 hours from PA to VA, take time off of work to help us.

While 4 years later, we may not have many hospital visits or inpatient stays with where Emily is at in treatment, but it sure would have been nice to have family who says they love you come around and want to be around and when they finally do stop by, they are looking for an easy out. But the last 4 years we have heard so many excuses as to why they couldn’t be around… studying for school, trying to find a job, working too many hours and when they said to call if we needed something, that one person you were looking for never showed, they always sent someone else. 

Grandparents play a special part in a child’s life.  Children need to see that their grandparents are just as much part of their life as their own parents because they not only need this, but it also teaches them how to be a good parent when they get old enough to be a parent themselves.  The siblings of children who spend a lot of time in and out of the hospital also need the attention of grandparents because a lot of the time the attention is on the child that is in treatment and they deserved to have some family attention. While I wish that this extra attention was given to my other children, it was not. They too spent a lot of time in and out of the hospital with Doug watching their Sister fight for her life. 

This long overdue update is something that I have struggled with, because it is about our experiences over the past 4 years. That struggle with having family living so close and minimal support has been really difficult, the struggle of people coming in and out of your lives is hard on your heart!!

We receive many emails through this blog from many who ask about Emily or how they can help. Back in August 2014, I started receiving emails from someone, who from time to time would ask about how Emily is doing.  I never thought anything of the emails, but then one day I was asked, “Do you know who I am?” I didn’t know who the person was because receiving emails from someone is not that odd.  After receiving that email asking, “Do you know who I am?”. Well I learned within just one week this man was my biological Father (DNA confirmed 99.9%), and we have a Family that I didn’t know existed. Not only did I not know (Believing the man who raised me with my Mother was my Father), but the gentleman on the other end of the email did not know about me either and he was quite shocked himself. He was told by someone he had not seen in years, while he stopped at a gas station. He was informed about Emily's diagnosis, that they believe I am his first born & he has three other Granddaughters. We have started to build a relationship with my Dad, his Wife, my Two brothers, Two Sisters, and five nieces and two nephews and one beautiful Grandmother.  We have many other family members we still have not met and hope to build a relationship with them also. For 36 years I was told someone else was my father and that man passed away 2.5 years ago, I asked my Mother to support my sister and I and come to the funeral for him to support us.  She would not go with us and now today I know why she wasn’t there.  Once I learned about this information, I confronted my Mother and stepfather and was lied to not only once but on several occasions.  It was insinuated that they were tricked to come visit and felt like they had been "setup" and I should have never confronted them the way I did. They felt like it was a matter that could have been handled over the phone. Well we were headed on a 14 hour drive to Michigan for scans and I needed to know the truth. I could not wait the 6 days until we returned to Virginia and anxiety over scans.

Since then there has been no phone calls made, or any attempt to try and make it right. No phone calls to say “sorry”, "how are you holding up?" and no phone calls to explain.  No stopping by to see the girls, holidays have passed with no contact and two different scan dates have passed and no contact has been made. Two months after this happened, an email was sent to both my Mother and stepfather, but still no response either of them.  The girls talk about their Nanny and Pop on an occasional basis, and 5 months later a phone call was made to them from the girls, and no answer and no return phone call have been made to them. A Christmas card was sent letting them know that the girls had tried to make contact with them with no response. 

The most difficult part of all this was having to sit down with my Husband & Daughters and try to explain what had happened. And then also learn that there are hereditary medical issues that I did not know about that could have affected Emily's prior/future treatments. Knowing my Father missed 36 Birthdays, I missed 36 Fathers days, my girls were cheated out of a little normalcy is very hard for me to swallow.

I have held all of this in for so long and am finally letting this out because I can’t hold it in any longer, It has been very difficult for me to this keep all of this inside. 

So on the brighter side of this journey, the girls have a large family we didn’t know about and they have been very supportive thus far.  All of them want to be part of Emily’s journey and share in the experience what we are going through.  The girls’ grandfather want to be part of this journey and be in Michigan if we need him, and be wherever he is needed, if we were to make a phone call. I have asked myself a lot lately, Why would anyone want to walk into our situation or even inherit it? And for that love that this family has brought to us, means so much. 

Remembering 2011, when we headed to Children's Hospital of Philadelphia for antibody therapy, prior Emily starting the next stage of treatment she needed to have scans. The radiologist found a new spot on her lower spine, so she was not able to continue on the protocol. We were told that there is no cure for Emily, and gave her 6 months - 1 year to live. They wanted to put her on a low dose chemo to buy her more time & hope for the best. We had the dreaded "quality of life talk". That is when we made the decision, we will do anything, go anywhere to save our daughter. We don't want any regrets. We promised each other as Emily's Parents and her advocate, there will be no, "we could have, we should have, we would have's." What ever it takes, what ever the cost, what ever the sacrifice, we have done it & will continue to. Some people think that we as parents overdo it, as a parent I don't think I can do enough. I do not want to miss anything. Every breath, every smile, every tear, every morning hug & kiss goodnight, and the constant "I love you's" daily. 

This blog is not about wanting people to feel sorry for us, feel bad for Emily or our situation. It was intended to keep our extended families & friends in Mass, VA, CT, SC, WV, PA, FL and so on informed on Emily's treatment process. We never thought that it would have taken off the way it did & Emily would have almost 8000 Facebook followers. We don't want Emily to be known as the little girl who has cancer. She wants to be just like every 7yr old. She is Doug’s first born and his biggest inspiration. Not for only what she has gone through, but was she has endured & become. She is very honest, companionate, and true to herself. She knows who she is, where she's at, and where she wants to be. Most adults can not say that! We are so proud of her and all of her accomplishments. We want Emily and her sisters to someday look back on this blog and understand the importance of family, and that we love them unconditionally, it does not matter how bad things are, we will be there for them no matter what!! Doug said something in the past that has really stuck with me. "There's nothing that could keep me from my Kids, I would desperately keep calling, texting, emailing, banging on their front and back door, whatever it takes to get through and make that wrong right." 

This latest update is not intended to hurt anyone. I hope by some chance some good will come out of this and people will take a long hard look at their relationships with their Family members, friends, or someone that has really meant something to you and try to work it out in this New Year. Life is too short & Family is everything.

Happy New Years to everyone.