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 27, 2012

As Parents...

This is a bit raw tonight, because our hearts are hurting badly!

We all have to make a lot of decisions as parents, a lot! When you get pregnant there isn't a guideline on what to do and there isn't a handbook that tells you decisions you may or may not have to make! Prior to coming a parent, no one tells you just how many decisions come into having to be made? From small decisions to big decisions... Decisions that are easy to make and some that are hard to make! Some that could change ones life and some that could change the family's life!

But as parents with a child with cancer or other illnesses parents have to make decisions that no parent ever wants to make and no parent even wants to sit through and listen to have to make them later! When your child is diagnosed your life changes forever and you realize that you are now signing papers allowing the hospitals to give fucking toxic medicines in your child's veins! You are watching these toxics drip by drip going into your child's body and now making sure the hospital is doing everything right because you are in a fight mode! Fight this damn disease that is invading your child! Your signing papers to do surgeries knowing side effects could be life altering to your child or even worse death! Yes you have to sign these papers and each time yo sign these papers your heart breaks because it just reminds you that your child has a disease that you are trying to rid of their body so they have a fighting chance to attend grade school, middle school, have their first dance, high school, homecoming and prom , their first boyfriend and their first breakup and getting married! Fuck it hurts to even fathom the thought they may not get any or all of these firsts and just events! It scares my every being to think that Emily may not be in that rear view mirror and hurts to think that "daddy's girl"...

Today we came to the realization that the fight we once had is not the fight we have now!! The fight is no longer about trying to cure Emily, the fight is about keeping this disease at bay and keeping her comfortable and with a good quality of life! Yes really that was our conversation a conversation that no parent wants to have and to have about their child! Realization that this damn disease has a grip that we have to get our hands on!! Our hearts hurt, it js pounding with fear, sadness and worry and the heartache is painful!! It is getting harder and harder to talk about! People ask about Emily or how things are going and I've come to realize it is harder to talk about anymore to anyone, it's as if we are back at the beginning when it was hard to talk about but now it's different, our hearts hurt, they are bursting at the seams and just want to rip open and scream out!

So as parents Doug and I are forced to figure out what is next for Emily and as parents we have to talk to Emily and tell her what is going on! We have to tell her we are not almost done with treatment, but that now we have to fight harder and hit this freaking disease again! As parents we are still looking at trials and trying to decide what to do !! As parents...

Today was hard, hard to talk about what the doctor here feels that we should do and watch as these doctors and nurses that we have spent the last 2 years with have more emotion about our daughter that we all had tears in our eyes! Emily has started to talk more to Dr Gowda and loves Elaine, something that we all take notice with! Not a dry eye in that room, talking about Emily who is progressing from a damn disease that should never even be in her body! A disease (damn cancer) that should never be in any of our children's body, that we don't even know what is happening! This disease can become so aggressive that we won't even know what hit us!

Just know that we still have our big guns on and we are not ready to give up this fight, but we are bursting at the seams that we are about to blow! I would be lying if I didn't say we are not scared, because we are scared of everything! Scared of EVERYTHING!!

We haven't made any decisions just still talking them through again as parents! Waiting in scans to be scheduled in Michigan or early January!

Tuesday, December 25, 2012

Merry Christmas

Merry Christmas to everyone from Emily and the rest of the family!

Thank you to everyone who made this Christmas such a huge success! Thank you to Steve Bryant from Wholesale Guitars and Iron Eagle Riders along with Amy Kern Gordy and Sherri Jimenez, Packages of Hope, The Blanket Fairy, Sue and Jojo, Ed and Vickie and all of the other amazing people out their who made these girls Christmas such a huge success and a very Merry Christmas!

Thank you

Saturday, December 22, 2012

Thursday, December 20, 2012

I Don't Have a Post Title Tonight...

Our Beautiful Christmas Baby Girl

Right before the 3rd round of Antibodies, we learned that Doug's best friend was diagnosed with lung cancer. The day before Emily went inpatient, we made Thanksgiving Dinner and I made an extra meal for Doug's best friend and wife whom had already been in the hospital for a week for Doug to take over. Doug has been visiting with him and checking in on him and helping him with questions.  Tom is an amazing man, a father, an amazing husband and doesn't deserve this, he takes great care of hisself and always works out and eats well, so please send some love for him. We are walking the journey with him and his wife as well. (This was random but I was thinking about him and really wanted to share)

So today...today...today was a long day, longer than what we expected it to be. Counts were checked this morning and Emily's platelets dropped again, this time to 19.  So, they dropped from 29 to 19 in two days. Certainly not what we wanted to hear and we were asking nurse Julie why she thought they were dropping.  We really don't have an answer, but she had to get a transfusion. Once the platelets were just about done Dr Sholler and the Nurse Practioner Shannon came in.

I can't remember what we were saying but I think it had something to do with the platelets and Dr. Sholler was standing there, and said "Well there is progression."  WHAT? WTF you have to be kidding me?  Im sorry you said what?  She indicated she has some more spots in her spine and some on her head.  Im sorry I can't be technical here and tell you were because this honestly wasn't the news we were expecting to hear.  We didn't want to look at the scans, and didn't even look at the report, because once again like 2 years ago everything seemed blurry again.  Tears began to flow and everything around us just seemed to stop.

Emily has true progression these are spots that she has never had before.  I know that Dr. Sholler said they are only in the bone, so no soft tissue just cortical bone. She has been taken off the CH14.18 trial so no more inpatient at this time and all medicines such as GM-CSF and accutane have been stopped. Its not working because the disease is spreading. IT'S NOT WORKING DAMN IT.  We really thought the damn antibodies would clear us, what happened.  How?  Why? 

Because of the concern of the platelets dropping, they are worried about her bone marrow, so tomorrow at 8AM we we will meet with the nurse to have another CBC done and then have a bone marrow biopsy done. The biopsy was not planned, so this had to be placed in last minute. We should have a preliminary by end of the day of the results on her bone marrow.  We will talk with Dr. Sholler about DFMO, she thinks we should put her on this and let Emily's enjoy the holidays and we can discuss from there what our next steps will be. We think this is a good idea, Emily deserves to be home for the holidays with her sisters and have a wonderful day. We do already have Dr. Gowda searching for what other trials may be available to us and Dr. Sholler is looking and we as well will be looking. The Bone Marrow results will give us more of an idea of the way we need to go as well.  If we have bone marrow disease,we are playing with something more messy.. But we are both are even more scared because Emily has not had any bone marrow disease since she was diagnosed 2 years ago.

2 years to the damn day Emily had scans and there is growth.  What the hell? We are both at a lost here, both feeling sort of not together, just not understanding how this happened. Doug and I both went in seriously believing some of the spots had gone away and that we were well on our well of acheiving that clear that we have been wanting. Emily deserves to be clear, she really does.  Emily DESERVES THIS.  Our Christmas wish didn't come true and our hearts are broken and we are both scared. Emily is not in any pain right now, nor has she complained of any at this time and we hope it continues to stay that way and that this disease will go away.

Im sorry I write this, but I am.  Randomly today tears have fallen for both Doug and I. Neither of us can fathom the thoughts that something ever happen to Emily and have our 3 girls, 3 girls together.  We can't fathom the thought of Emily not being here to celebrate her birthdays and Christmas and Holidays. We can't fathom the thought of being in our vehicles and looking in our rear view mirror and she not be there, so we continue to fight.And we honestly don't how we could handle it... Seriously this disease is a monster, a monster that invades our children and there is no understanding it.

We haven't yet explained this to Emily, we really have to find the right way to explain it. Emily is so ready to be done with treatment, so we really need to find the words to talk to her and really have her understand. I know that many of you have been waiting for an update, but we really are still trying to swallow all of this. If we don't respond to text messages, emails or phone calls, please know right now we are still learning to deal with this in our way.  We are still trying to figure out everything and moving forward.

Today we went and picked up purple and yellow chalk for Teddy's mom, for Teddy, for Emily and all the other children fighting neuroblastoma. If the roads are not wet and covered with snow, we will be stopping every so often to write on the road..  We will draw a big yellow ribbon for pediatric cancer and in purple we will write cancer kills children too.

2 beautiful girls fight Neuroblastoma and they are both amazing.
Today we also went to visit Brooke who is inpatient neutrapenic and bring her some Christmas cheer. It was nice. Nice to finally meet Brooke's dad and see Brooke's Mommy. The love that both Brooke's dad has for Brooke and the love that Doug has for Emily can be seen everywhere.  Daddy's girls...

Daddy's girls. 
Please continue to think of Emily and that her bone marrow is clear and that mom and dad conitnue to have the strength to get Emily through this and that we make the decisions that we need to make.

Wednesday, December 19, 2012

Scans Completed

Mommy holding Emilys fingers during the scan.

MIBG/CT spect was done and finished earlier today.  Emily did great like she always does and actually slept during most of the scan.

Emily had her counts checked on Tuesday when she was accessed and we got a call last evening letting us know that her hemoglobin was 8.9 and platelets were 29, so both have dropped since last Thursday evening when they were checked.  So they will be checking them again in the morning to see if she will need anything at all.

Seems that bad weather is on its way here, so hopefully clinic and visit with Dr Sholler won't be too long, but we will see. We haven't received any results as of yet, but Dr. Sholler was not in today so they were not looked at by an oncologist until she comes in tomorrow. Stress is just a bit high still, but hopefully all will be well in the morning.   We have honestly laid low while being here, there are a lot of sickness out there.  This time at the Renucci House they put us in a room that has a kitchen which has been really nice and we are so happy they did.  Especially with Emily needed her shots and they need to be refrigerated, it has been very nice.
Thank you all for your love, support and thoughts.

Oh, I have received a couple of message again and emails about wanting to send Emily cards, or you have some bandaids, thank you all so much, here is our address:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

Tuesday, December 18, 2012

2 Years

Emily on the plane this morning...
(Written on the plane this morning)

Wow, 2 years!! We remember 2 years ago on Saturday, December 18th we were having what seemed to be normal day to us! Emily was 3 1/2, Jessie had turned 9 in October and Brianna had just turned 1 at the end of September!

Doug had gone to the get a ton a pellets for the pellet stove that day and pulled the trailer around back the house! We were just hanging out by the fire and enjoying the warmth and our family!

Emily had complained that her stomach hurt, so we thought she may have to go to the bathroom, she tried but wasn't able to go. A little while later she was still complaining her stomach hurt, but she also had a fever accompanied with the tummy pain of 101! We called the oncall pediatrician and she said that a tummy bug had been going around, try to give her Tylenol for the fever and see what happens in an hour! The hour went by and instead of her fever going down, it went up! So we called the pediatrician again and she said bring Emily to the ER to see what was going on!

We left Jessie and Brianna home with family and Doug and I brought Emily to the ER! What we didn't realize on the way there or even there for a few hours before a CT scan was done, that it was going to be a long night and a long journey ahead of ourselves!

What we heard at almost 6am in the morning, is something that we never expected to hear after being there for almost 5 hours! We were all exhausted, Emily was asleep on the ER bed with me beside her asleep and Doug asleep in the chair beside the bed! The doctor walked in and pulled up a chair along bedside and we woke up! She said, "Mr and Mrs Hubbel, your daughter has a tumor!"

At this point, we were sent to VCU medical center by ambulance with daddy following behind, and having to call Jessie's dad to come and get her and for family to come to the hospital! After this everything seems really fuzzy, and blurry and what everyone said and why we were at VCU and why things were happening! It was really a blurry time!!!

Today 2 years ago today, we learned Emily had a tumor in her right adrenal gland in her stomach! We didn't know if it was cancer, we didn't know if it was metastasized, we didn't know the word "Neuroblastoma" ! We didn't know anything!

I must tell you all something, while we knew that children could get cancer, we certainly were very naive to the fact! (what I am about to tell you, I did talk with Rachel about and tell her) I was on a local mommy board prior to December 18th and had been for a while! I remember following a mom by the name of Rachel and Roger (dad) whose daughter, Charlotte had brain cancer! Rachel was also living a normal life until her daughter was diagnosed! I silently read their journey and had a hard time understanding that this could happen to a child! Until it came down to Rachel and Roger had no other options after traveling all over the world to help her and beautiful Charlotte passed from a childhood cancer. I remember reading it when she passed and was laying in the bed with Doug and I was crying, and he asked what was going on. I told him and he said, "I couldn't imagine!" I see butterflies and I think of Charlotte...while I never met sweet Charlotte, she was a beautiful little girl who loved to be read to!

So all of your parents of your beautiful children, ask yourselves, have you said this? Have you said, "I cant imagine!" and try to block it out and move on wiht your life? I know that while even though I read Charlotte's journey and I was silent, I said this too! To this day, I wish we were more aware and that many other parents, teachers, aunts and uncles and everyone else was more aware of childhood cancer! Please don't be naive like we were, please be aware!

2 years ago today, our lives changed forever, never will Emily, Jessie and Brianna and Doug and I have what we thought was "normal"! We learn to live a "new normal" and take things one day at a time and learn from there!

On December 23rd, after surgery (biopsy), many scans, lots of IV's we learned that Emily was diagnosed with Stage IV Neuroblastoma (high risk)! Neuroblastoma was such a foreign word then, and now I hate everything about that word and other types of childhood cancer. We know things now that I wish we and no other parents had to learn. We know about CBC's, chemo and types of chemo, MIBG scans, MRI, CT's, PET scans, blood draws, needing blood product transfusions to continue to live and ports and so many other things! Mommy had to learn to be a nurse to take care of Emily's line on a daily base, learn to change dresses for her port, give shots and give medicine upon medicine to our little girl. Mommy also be a momcologist, and daddy a dadcologist! Things I never thought we would be doing! I thought we would have normal well check ups at the doctors, doing dance and all these other things.

So, today Emily and I are on a plane to Grand Rapids, Michigan. Daddy and Brianna are driving because we learned at 840 am this morning our pilot to take us back, was really unsure with the weather because they are calling for freezing rain and then snow Friday! Wings of Mercy is one amazing organization that has really made it possible for us to get back and forth from Virginia to Michigan and we are very thankful for all of the kind pilots that take time out of their day for us and many other families!! but eith the weather Possibly not being safe conditions for flying, we decided to instead of not knowing when we would be home because (Christmas is in a week and we want our family home together) that Emily and I would fly so we don't miss her appointments today and daddy and Brianna would drive and we will see them tonight. It is definitely weird to be on this plan (on the 2 year mark) without Doug but we also want to do what is safe and best for our family.

--Emily has her MIBG injection today with clinic
--Scans tomorrow at 830am
--Meet with Dr Sholler on Thursday at 8am

Originally we were to meet with Dr Sholler tomorrow after scans, but she had something come up, so we will meet her early Thursday morning now! This journey has taught us that a protocol, plans can drop just like that and you just have to take it and roll with it!!

Anxiety is extremely high and continues to just get higher as we get closer to the scans! This is our big to us, being that Emily hasn't been in chemo in almost 3 months and she is doing the antibodies trial that is compassionate use! These scans really will tell us how things may look and if she will get to continue the trial or what! I don't want to think negative, but with this disease you just never know, you learn that every child is different! But honestly for Christmas daddy and I wish to see our little girl be clear, with no disease!!! It would be the best Christmas present ever!

Please we ask that you send your good thoughts, your love and whatever you do!! Thank you!

Monday, December 17, 2012

Long Overdue

I realized when I posted about Teddy Greer's Parents Wish that  I haven't posted in quite some time and I honestly don't know what happened there.  And while tonight won't be the night that I go into a huge post because we have a lot of scanxiety going on right now when upcoming scans.  

Emily just finished the 3rd round of antibodies on Friday.  So, tomorrow we leave for Michigan and have MIBG Injection tomorrow, scans Wednesday morning and we meet with Dr. Sholler Thursday morning.  These are big scans for us...being that Emily hasn't been on chemo for about 3 months now, so our anxiety is extremely high and what also makes the anxiety even higher is that December 18th into the 19h marks 2 years since Emily's diagnosis.  2 years ago tomorrow we went into the hospital and it is when it all started.  2 years.

I will update more tomorrow.

Please send your love and thoughts.

Teddy Greer's Parents Wish

I copied this from Teddy's Caringbridge... Can you help???

Here is my christmas wish: I would like you to grab 2 sidewalk chalks, a purple one and a yellow one. Go for a walk... and every so often, get down and draw a big yellow ribbon for pediatric cancer, under it, write in purple:
cancer kills children too!
watch the documentary!

I realize it is raining or snowing in most of the country, so it might take a few tries, it doesn't have to happen today, just anytime really, as long as the word gets out throughout the year.

Do it for:
Christopher Mullen
Juliana Pena

Ronan Thompson

Olivia Lambert,

Super Ryan

Anna Connor

Nick Franca

Sal vanni

Ylaria Cazares

Sam Anderson

Patrick Chance

Sydney Dudley

Sierra Rayn

Patrick Rider

Ava Holder

Elizabeth Westberry

Evan Linberg

Ezra Matthews

Ila Jean Rathbone

jarvis brett

Isabella Santos

Lily Blackman

connor Carvajal

Brandt Alexander Pflueger

Mason Thomas

Westin Miller Dietz

Lieym Bovee

Brennan Scurlock

Kyle James Williams

Kacie Clough


Nicholas Defelice

Kania Russell

Aisylin Bledsoe

Lilyana Barthuly

Reggie Green

Sadie Rose Clifford

Anjali Khatri

Jensen Daniel Byrd

Ariel South

Connor Fox

Joe Aquaro

Rodney Kaufman

Haley Ponting

Keiontae Hill

Eli Horn

Layla Blakeley

Bryson Youngblood

Kadie Stonebaker

Saoirse Fitzgerald

Madison Jane Allen

Katelyn Roker

Deyja Moses

Charmaine Lim

Aiden Shivers

Hayley Kudro

Thomas Cammack

Kody McCullen

Ryan Regan

Lilly DeJesus

Joshua Johnson

Adam Buiko

Tegan Stehr

Addison Jo Blair

Mckenzie Leigh Smith

Jack Bartoz
Hans Weberling


(the kids listed above are just some of the ones who have died of Neuroblastoma since Teddy was diagnosed in August 2010....)

Do it for the kids still fighting this beast, the ones who will be leaving in the next few days maybe weeks...., and all the children who have been killed by cancer.
Thank you.

Hayley Kudro
Jamir Gee