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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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.

Wednesday, December 24, 2014

4 Year Anniversary

Today marks 4 years since our journey with Emily's diagnosis of Stage IV Neuroblastoma. December 23, 2010, 4 years ago, our little girl started a fight with cancer. Its hard to believe that she has been fighting this disease non stop for four years, but she has. While we would like to have a anniversary date for an end of treatment, for NED (no evidence of disease) for so many years, it is just not part of our anniversaries dates as of yet for Emily, but we will continue to hold hope that we will one day have them.   While we certainly wouldn't want to hear anyone say Happy Anniversary, what we want to say is we are so happy that Emily one amazing girl and making such huge difference in this world. She always amazes us. after everything she has been thru, and continues to deal with, she still walks through those hospital doors or into any situation for that matter, with that infectious smile. Her passion in life is was most of us take for granted. This was never a group that we wanted to be a part of, but we are, and along the four years of holding Emily's hand while she continues to fight with a smile, we have learned so much along the way.  We have met some really good people who continue to stand by our side while Emily fights and through her journey we have learned so much about family and friends.

Doug and I still remember like it was yesterday the day we took Emily to the hospital and when we were told that they found a tumor in our daughter's body. The ambulance ride to Children's Hospital of Richmond with Doug following behind Emily and I, and the extended stay inpatient during Christmas while trying to determine what Emily was diagnosed with.  All we wanted to do was to take our daughter home and be able to celebrate Christmas with our girls at our home.  Doug and I still remember being told by someone in the hospital that this gets easier with time,  and we have found that this doesn't get easier with time, the only thing we have found is a "new normal" that continues to change constantly as you go through the different treatments with your child, you just learn to deal with and make the best of it.

Like I said, over the past four years we have learned so much, not just about cancer, but about family and the importance of family,friends and community. Having honest and loyal family, friends and community a part of our journey, makes the journey with Emily so much easier.  The past 4 years has been hard on Doug and I, and most of these years have done them alone taking care of our girls while Emily fights for her life, but we have done it together. We continue to do it and make things work, even though we wish it would have been and continue to be different..  So many friends and family have walked in and out of our lives, because either our situation is just too much for them to handle, or just not something that they want to be a part of, just please remember while we do have so much going on in our lives taking care of Emily,  that doesn't mean that you can't talk to us and tell us things because you think it might be too much for us to handle, because it is not.  Remember we are normal people too who just like the rest of you want to be part of a "normal life".  Today we just want to enjoy the love of family and being with family and watching our girls smile, laugh and play. and feel that love that surrounds them from family that loves them. 

While this 4 year anniversary, we wish we could say that Emily is NED, we want this 4 year anniversary to be one that we are happy that Emily is thriving in life and doing so well going to school and running around and enjoying spending time with her sisters and her dad and I. We look at our little girl every day and we are so happy that every day we can celebrate another day with her and watch her sleep, that we can hear her talk and make jokes and talk about her friends.   Emily is a mommy and daddy's girl and to watch the love that she has for her parents, and her family would make one's heart melt.  We love hearing our daughter talk about all the good things that she wants to do, she has a heart of gold and a smile that you would never forget. 

Although right now, Emily's treatment plan, there isn't much to update in that part of her life. She is doing very well, loves going to Crenshaw Elementary School & loves being part of every event & function. So even though you don't hear from us to much lately, these updates are still hard because that means every time we sit down to write that means that Emily's Journey for the past four years is true and a journey that we never imagined we would be a part of. We are so happy that Emily is doing well, we always try to maintain a positive approach to every situation we walk into but we are not naive to the fact that this could change in any moment.  We know that the "new normal" that we live today could be ripped out from under our feet, everything could change and Emily could be spending a lot of time back in the hospital again. We don't and never have taken any of this for granted, every Birthday, every hug, every "I love You", every single moment!! 

Thank you to all of our friends, family and community who continue to stand behind our journey with Emily and hold our hands and be here with us as we continue to watch Emily inpsire.  Without all of you, we couldn't be where we are today so we thank you so much for all of the love, compassion and thoughtfulness each of you continue to share with us, it means so much. Thank you for the past 4 years and we thank you for continuing to be with us.

Thursday, December 4, 2014

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!!

Wednesday, December 3, 2014

Long Day

Today was a long day at hospital...Emily had clinic for accessing her port and checking counts. Her counts came back and they are starting to come back up so it tells us she was fighting something about a week ago.   We should get results tomorrow of urine markers!

In between clinic and injection we met up with another neuroblastoma fighter , Molly and her mom Trisha and Dawn whose son lost his fight with neuroblastoma, superbub! It was great seeing you guys today!! Then we had injection and had lunch with Molly!  Emily also had her hearing test! Hearing test shows no significant change which we are very happy to hear! She is only a few decibels down from where she was last time so if we want to go the route of using an FM system we could do that if she needs more help at school. 

Tomorrow Emily goes back to clinic at 12pm to get accessed again and then she has her MIBG/CT scan at 1pm! We thought we would have to wait till Friday to get results but Dr Sholler will be able to get them so we meet in the clinic around 3pm!! It will probably take longer to get them but we will see!

ScAnxiety is definitely here so please wear your Emily Gear in support of Emily and send your love and thoughts!

Tuesday, December 2, 2014

Michigan Bound

We all had a wonderful Thanksgiving.  This holiday we were able to spend time with Doug's family in Massachusetts, which we haven't been able to do in quite some time.  Emily loves spending time in Massachusetts. 

Its the little things in life that we are realize are big things.  Spending time with family who loves to spend time with us.  We got to spend the weekend with Doug's sister Tricia and she made Thanksgiving and had Doug's dad over.  It was wonderful to see the rest of the family and enjoy spending some time together.  Best of all, it was spending time with family that meant the most, again its the little things, but you realize family is such a big thing in life. We thank all of our family in Massachusetts and love and miss you guys already.

Emily continues to do well.  We did get an email from Dr Gowda before Thanksgiving last week to let us know that Emily's vitamin D levels are low and to start her on a supplement during the winter.  So we did start her on that over the weekend.  Hope we will see her numbers starting to come up when they are checked in Michigan tomorrow. 

Yesterday we had our first leg of our trip to Michigan and stayed with our good friends in Pittsburgh, PA. Again thankful for the little things that we have such wonderful friends to give us a warm place to stay, warm dinner to eat when we arrive and a place to sleep for the night to rest up for the rest of 2nd leg of our trip.  Thank you guys so much for being such wonderful friends.  Last night the girls also celebrated Christmas with them since we won't see them around Christmas time and the girls enjoyed opening gifts. 

Today we are on our way to Michigan, and we have about 157 miles left of our trip.  We were going to bring the camper like we normally do, however Doug's truck was acting funny and with the weather we felt it was safer to just bring the van.  Because we were late in getting some place to stay, we ended up having to get a hotel close by. So we should be arriving around dinner time to the hotel for the night as long as traffic isn't bad.  We are thankful to those who helped with sending gas gift cards, it really means a lot. You can also donate through Emily's blog if you wanted to help while we are here.  Again thank you to all of the support, it really means a lot to us.

Tomorrow Emily has clinic to get accessed and check counts and then she has MIBG Injection and then she gets her hearing checked.  We haven't had her hearing checked in quite sometime and we know her hearing has suffered a bit more. We are hoping that her counts are coming back up from where they were down from about a week ago. Tomorrow night there is a "Frozen" party for all the kids from Helen DeVos clinic.  Its a play put on by all the nurses from the clinic, so it should be a good time for the kids. 

Emily's scan is on Thursday at 1 pm, so our scanxiety is building up for scans. If you have your Emily gear, please wear it to support Emily and our family as we go through scans.  Scans are about a hour and a half.  Because they are later in the afternoon we are not sure if it will put us meeting with Dr. Sholler on Friday morning or not.  We are waiting to see with that.  PET scans and bone marrows will be scheduled if there is any progression.  We are hopeful for stable and more specifically better than stable.   We know Emily looks great, but we also know Neuroblastoma is a monster and can happen at anytime and we want this monster gone from her body.  She deserves.  We remain hopeful to hear that one day she is NED and if we ever hear those words, we can promise you there will be a BIG NED party for her. 

We will update more tomorrow after the day, but please keep Emily in your thoughts and remember to hug and kiss your kids and tell them how much you love them.