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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Wednesday, November 27, 2013

What's Happening?

Today we are in the clinic waiting for Emily to get her treatment. Right now she is starting round 11 of the Avastin/temodar/irenotecan trial. We know that it is holding her stable, but we also know that we have run her course with this because her spots are no longer changing and two of them are brighter. At this time, it does give us time to review and reach out to other doctors on what is the next best course.  We have a few options that we are looking into.  Our goal as it has always been, is NED,with that goal in mind it's trying to make the next best path.  If we decide on the route of chemo and she has to lose her hair again, we are continuing to talk to her and tell her this can happen. But we have also told her that if it has to happen, Mom and Dad both will shave our heads to support her in having to lose her hair.  Thank you for many of you asking about hats, please know we may still be in touch with you on the hats, and we are very thankful.  With that goal in mind too, we are still looking for data to back what she maybe going into, but because she is no longer in the frontline therapy, all of her options are phase 1 and phase 2 trials, so numbers and facts are harder at this point. We are still looking into the vaccine trials which is the one in Texas, so there is a lot more traveling involved it's that, but we know we have to get her immune system up again, her platelets.  Today they are at 33, so still very low, so with the start of avastin and the chemo starting Saturday they are going to drop again, so she will need to be back Monday or Tuesday to check counts.  We continue to be very thankful for those who make donations, they are very helpful with Emilys travels, medicine and expenses. So thank you. The gofundme is also still available, http://www.gofundme.com/emilysjourney ...

So right now, our plan is round 11, this gives us 28 days to hopefully find the best direction. We will be back in Michigan for scans in January.  Just know It's hard to make the best decisions,  but today we are thankful that Emily is here with us for another Thanksgiving and thankful for everyday she is here and can continue the fight with her beautiful smile. 


Thank you Binkeez for Comfort for sending this wonderful blanket to Emily, she loves it, it is so soft.

November 30 is the last day to use the "Emily10" code on smilemakers.com to get 10%off bandaids and free shipping.  We are able to continue to receive bandaids up through December 5th, because our plan is to present them to VCU about the 2nd or 3rd week in December. As of last night, we are almost at 2000! Our goal is over 3000, so keep ordering and sending them in. You guys are doing amazing. Address is PO Box 5383, Midlothian, VA 23112! 

Shout out: 
OB Gates Elementary for collecting over 350 bandaids
Crenshaw Elementary for collecting over 400
Manchester High School for collecting over 1000
Smilemakers for not only making a donation of bandaids at the beginning but for the coworkers for doing a drive
Coworkers at Dominion in Cleveland, OH and the 8th and Main Building in Richmond, VA for helping
Churches and Apartment complexes and all the many others 
The list could go on and on and we don't want to forget anyone, because even one box brings a smile to the kids here in the clinic!!!!!! THANK YOU!!!!!

Happy Thanksgiving. Remember to hug and kiss your kids and tell them how much you love them!

Friday, November 15, 2013

What Does the Fox Say?


This has been in my head ever since yesterday morning when Emily was in her scan. She was having a hard time sitting there and her toes were bothering her, so I was trying to get her mind off of it. So she wanted to hear "What Does The Fox Say?" One of her nurses helping with the MIBG scan, actually dressed up as What Does The a Fox Say, so she was excited to hear her favorite song. Lol. Daddy and Brianna packed up the van while Emily was in her scan, so that when we were done meeting with Dr Sholler we could just leave. 

Emilys counts were checked again since her hemoglobin dropped so much from last week, but yesterday they were 8.7, so they did drop, but not enough to require a blood transfusion. We haven't seen her hemoglobin drop that much since May when she needed a transfusion. So we are hoping that it goes up on her own.  But also waiting to hear from Dr Gowda if we need to come in early next week. 

So, the results. I know everyone has been waiting for the results, but we didn't leave Michigan till about 215pm yesterday, so we didn't get to Pittsburgh until about 9 and honestly we were all exhausted, needing to eat dinner and daddy and Brianna not feeling well.  

HMA and VMA were within normal range,  not sure about LDH but no one said anything. Scan results show stable, meaning no new spots. The results Show avidity in right skull base near the soft tissue abnormality on CT. (We have never had anything show on the CT so this is new, but not new because shows on MIBG).  Increased activity along the floor of the bilateral middle cranial fossae and proximal left femur. All the other previous spots that she had before are still there with no change. 

What does this tell us? It says that the current regimen that Emily is on is no longer working and only keeping her stable. Which is obviously what we want, keeping it stable. But I have to be honest we wanted more than that, we have always wanted more than that. We also know it's no longer working when some of her spots are brighter than they were before.

So what can we do moving forward?
**DFMO (we will have to go back to Michigan and get a PET scan and a bone marrow biopsy. Have to be within 14 days of starting the compassionate trial of DFMO, scans still in Michigan)
**a new chemo cocktail: doxorubicin with vorinstat (not sure if we would have do round 1 in Michigan and then can come home to do the remaining rounds, scans still in Michigan)
**check on a TCell Vaccine in Texas through Crystal Luis to see if Emily would qualify
**check with Dr Modak on 3f8 (in NYC)
**see what Dr Gowda has available but scans are still in Michigan
**another round of current regimen since it keeps her stable

We really have no idea what we want to do moving forward. Obviously our goal is still NED. Both Dr Sholler and Dr Gowda do not recommend not doing anything at this time. When Emily was first diagnosed there was no trying to figure out what trial to put her on or what was next because there was a protocol already set for us. There is no longer a protocol anymore and now as parents you just have to decide what is the next best course.  What are you willing to put your child through and mor traveling or what have you. We don't have a plan, we will meet with Dr Gowda on Thursday at 9 to discuss what our possible next moves are. It's a possibility she could lose her hair again, so we would need to prepare school, her classmates ands letters home to parents of her class if we go this route. So we have already started telling Emily about this. So we will need to get hats again if we go this route.

Please don't get us wrong, stable is great in the grand scheme of things. What we didn't want was progression of more spots, thankfully that didn't happen. But our hearts want so much more than stable. Emily wants more than stable. We just don't have an end in sight yet. Isn't 3 years enough of battling with this stupid disease. But we are thankful that Emily is our fighter and handles it all so well. She is such a big girl and wise above her age.

Once we have a plan, we will update. We will take Emily to clinic earlier than Thursday if Emilys energy levels go down or bruising.

Thank you for continuing to keep us in your hearts, thoughts, love and prayers. Thank you for all those who wore Emily gear and shared it with us and thank you for continuing to help us though our journey with thoughts, love, prayers, gas cards and donations. They mean so much and help with our Journey and our continuing journey. Our friend started a gofundme to help with travels, expenses and other needs: http://www.gofundme.com/EmilysJourney
if you are interested. 

Make sure to hug and kiss your kids and tell them how much you love them. 

Wednesday, November 13, 2013

Exhaustion / Long Day

We got into Michigan around 9 last night and was thankful to be in a room at the Renucci House with a kitchen. Had a late dinner with Emily working on homework and then off to bed. Brianna and daddy aren't feeling well and I am with a sore throat but not other symptoms. (Thankfully!)


After a late night, Emily had a long day in clinic. She was accessed and thankfully on the first time. By time labs were back, it was already past time of going to get MIBG injection, so they were coming to the infusion room. Emilys hemoglobin took a huge drop from 10.9 on Thursday of last week to 8.8 today. WOW! Platelets were 29, so she needed platelets.  Just an extremely long day. Today for the first time Emily played with the childlife here in Michigan and she had a good time, but as many times as we have been here Emily has ever played with her. So that was nice. After a long day, we ar back in the Renucci House and Emily had a snack and she is already asleep. 

Tomorrow we have another long day. They want to check he counts again and MIBG scan is tomorrow and then we meet with Dr Sholler.  Please wear your Emily gear, saying a thought, love, prayers for stable or even better, 

Anxiety is awful here and dad and I have lots of anxiety.  Ready for this to be over. 

Make sure you hug and kiss your kids and tell them how much you love them.

Oh, we also had a very wonderful person start a gofundme.com for Emily. If you would like to help out that would be awesome and very helpful. Here is the link: http://www.gofundme.com/emilysjourney

Tuesday, November 12, 2013

End of the Year Scans

So we are on our way to Michigan. UGH!!!!! Last night we made it to our half way point. We are always thankful to have our wonderful friends Sue and Jojo in Pittsburgh, PA (our half way point) who always have dinner ready for us. Thank you! Today we will travel the rest of the way to Grand Rapids, MI. Thankfully we were able to stay in the Renucci House this time.

December 23 ", 2013 we will be reaching Emily's 3 year mark of battling with this disease. December 18, 2010 was when the journey started and we didn't know what was wrong.   December 23, 2010 she was diagnosed with stage IV neuroblastoma and we weren't given great news for outcome. November 16, 2011 when Emily was going to CHOP to start antibodies, we learned that she had another spot on her lumbar, L4, which was progression. December 20, 2012 after Emily had 3 rounds of the compassionate antibodies, Emily progressed with several places including her skull and more spots on her back.

So here we are in November again! Scans at the end of the year! Why did I tell you all that? Our anxiety is off the roof right now. The end of the year we tend to have news we don't like. News that takes us to other places. Sleep isn't happening much, no patience in sight, and just all the fear.

So, scans are Thursday! Here are the Appointments coming up:
Wednesday, November 13:
--1030am for port access and CBC 
--1130am MIBG injection
--most likely head back for platelets if under 30

Thursday, November 14:
--1030am MIBG scan 
--1230pm meet with Dr Sholler to go over results 

Thursday if you have Emily gear, please wear it. Take pictures and post them on Facebook tagging Shannon Hubbel, or post to Emilys Journey (www.facebook.com/emilysjourney) or email them to me at shannon@emilyhubbel.com. I will post them in an album on Emilys Facebook.  Please send all your love, positive mojo, prayers and thoughts for stable or better....

Remember to hug and kiss your kids and tell them how much you love them.

Sunday, November 3, 2013

Emilys 2nd Annual Band Aid Drive

Want to bring a smile to kids in the hospital?  Donate some bandaids to Emily's Journey for Emily's 2nd Annual Band Aid Drive: https://www.facebook.com/events/1429207783959021/

Spread this around and tell everyone.  Last year we collected 3000 boxes, this year we would like to collect over 4000.

When you post about this, please use the trend #emilysbandaiddrive

This is on the Event Page on Facebook....
We have started the "Emily's 2nd Annual Band Aid Drive" Last year we collected over 3000 boxes to donate to hospitals in need of band aids and this year we would like to match that number or exceed it! So, lets start sharing this event, share wtih your friends, family, work, coffee shop or anywhere that will let you share it. We want to bring a lot of smiles to the children fighting cancer. Thank you to SmileMakers for helping us again this year!!!!

Please ship to:
Hubbel Family
PO Box 5383
Midlothian, VA 23112

We hope you can help by bringing a smile to Emilys face by helping bring smiles to all the kids who use the band aids in the clinics, ER and Floor 7 at VCU and other hospitals that may need them!!!

How is Emily?

It is the million dollar question that gets asked often and normally the first question we are asked.

Overall Emily is doing well. Round 10 was actually delayed by a week because her platelets were not recovering. They were at 19 and held the round off and gave her platelets. When she went the next week to start they were 23. Dr Gowda actually likes them at 30, but allowed her to start with platelets on board. Day 4-9 was her chemo, and she already started the not feeling hungry and very tired before the chemo started. So, once the chemo started it was even worse.  Dad tries to go everyday that he can to have lunch with her at school to make sure she eats.  This past week she was scheduled to go Friday to have her counts checked, but we noticed Wednesday night that she was bruising pretty bad and Thursday morning she had petechia on her arm. When counts came back, everything actually dropped. Her ANC although not completely low, but it was the lowest it has been in a while, so we are just keeping watch to make sure she doesn't get sick. Platelets were down to 13 which is the lowest that they have been in a long time. So, they gave her 3 units of platelets and want her back tomorrow to check counts and most likely getting platelets. So all weekend including Halloween night we have been very careful to make sure she doesn't hurt herself. She didn't make it long Halloween night though because she was so tired from a long day at clinic and the chemo she is on.  Thursday will be day 15 of avastin and complete this round. 

We just learned Friday that Emily will be heading to Michigan the week of November 11th for scans on Wednesday and Thursday. It makes it really hard to make any set plans when you don't hear in a real timely fashion that you have scans, but it's been what we have been used to for the last almost 3 years.  Scanxiety has already started, especially saying Dr Gowda feels that after 10 rounds of what Emily is currently on if there is no change, that this is really no longer working to "hopefully" clear her and only keeping her stable.  So we really aren't to sure what will be next for Emily.  I know that Dr Sholler has been pushing DFMO, but compassionate trial of DFMO (if she has disease she would not be eligible for the DFMO trial) would only keep Emily stable, and our hope is to get her clear. The fear of keeping disease always means there could be progression like she had last year. 

So, how is Emily? Emily is doing well and hanging in there.  Every day Emily fights and she is so strong, and continues with a smile on her face.  She just finished her first 9 weeks of 1st grade in school, and she is doing well with school. She has been having a lot of headaches lately, but we are thinking that is from the avastin. She still isn't able to be part of gym with her low platelets, so we have had to keep her out of gym.

Please continue to send your love and thoughts to Emily as she continues to fight this horrible disease.  As to be expected, Dad and I have good and bad days with still dealing with this disease and hearing all the horrible things that continue to happen around us. Some days are really good and other days, you just feel awful.  We will always live in fear, fear of this disease, what it is doing in her body and what is happening.  

Remember to hug and kiss your kids and tell them how much you love them.