3 Years Ago

A Late night in December, it was the 18th into the early morning of the 19th, our family walked into the unknown. We walked into the hospital having no idea that our lives would be changed forever.  

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Emily had clinic on Wednesday to check counts... Her platelets have been remaining stable which is great. This time was the first time in a long time we have seen them over 35! While still low, they are 40, but is great because most trials ask for platelets to be at 50! Her hemoglobin did take a bit of a drop from last week to 9.8 so we are hoping that goes back up!  She did wake us up Tuesday night complaint that her right ear hurts pretty bad, enough to get Tylenol. During clinic, they looked at it and she has an ear infection, thankfully no fever accompanies that infection. But she is on antibiotics to clear it up.

Emily got to spend the day with her dad most of the day today at school. Dad joined The WatchDog Program through Emilys school, so she was so excited. They Got to take a picture together after morning announcements, Emily just lived having her dad there all day and dad loved watching her all day. He enjoyed reading her writing journal, painting with her, lunch with her and just enjoying the day!! (Picture above) Winter break starts as school ends tomorrow. Emily is excited, because they have pajama day tomorrow and her friend Lilly's mom made her pajamas, so she is excited to hang in Jammie's for the day on the last day of school before winter break. 

Saturday our PA friends, Sue and Jojo are coming into town until Monday morning, to spending a little time with them. We look forward to them coming. Sunday Emily has her ASK Childhood Cancer (the clinic) Christmas party and she us excited for that. 

She was looking a bit pale to tonight, so hopefully that isn't an indication that her hemoglobin dropped anymore and that she us just tired after a long day.

Round 12 of the avastin trial will start on December 26th, it is the last and final round of this regimen. We have exhausted efforts with this trial, and must find something to move forward with. Dr Sholler has emailed Chrystal Luis about her trial in Texas, so we will see. 

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We continue to be ever so thankful of all the wonderful people out there being apart of our journey and loving our family. Your Christmas cards, the bandaids, your donations, your gifts mean more than you could imagine and we thank you! Thank you.  You may still help out through Emilys page, www.emilyhubbel.com, or the gofundme at www.gofundme.com/emilysjourney. 

Please make sure you hug your kids and tell them how much you love them. Continue to spread the awareness of childhood cancer!

Day 15 Avastin of Round 11

In the clinic today, and Emily isn't quite herself today. Her temp was 99.9 (ack) and she just seems exhausted!  She was sent home from school yesterday morning after only being there for about 20 minutes because she said her eye hurt and the clinic was worried she had pink eye.  Thankfully her eye didn't bother her all day, so she must have gotten something inher eye but she has picked up something along the way Her WBC is pretty high too which suggests she is trying to fight something. Still waiting for the doctor to see if she may possibly need an antibiotic after her IV avastin finishes. Today is day 15, so her avastin just started about 10 minutes ago. Thankfully her platelets at at 35, so while they are still low, she doesn't require a transfusion. She is sleeping now from the Benadryl. 

Did hear from Dr Sholler about the trial in Texas, so next week we will provide a tube of blood to send to Texas, but we have to go over the consent with Dr Crystal Louis over the phone first.  We just want to have this ready in case we decide on that being the next move. Dr Sholler said Emilys ANC has to be Over 1000 if possible ands that it will take a few months for Chrystals tam to grow and bind to antibody. QWe are also thinking about NYC possibly 3F8, but we are still trying to make the best sound decision. The other thought would be a higher dose of chemo where she would lose her hair, but we just haven't made the best sound decision yet.

At this point we just want to make it through the holidays so she can at least hope to feel her best and then decide what is the absolutely best. This round 11 has been hard on her with eating, she hasn't been eating as much and she is still very picky about what to eat and the foods she likes changes often, but hopefully that will pick back up.

Thank you to everyone on the Text to Donate day, hopefully it was very successful. Also the gofundme is still open for anyone that wants to help and I promise it means very much to us, www.gofundme.com/emilysjourney... You can also still make a donation on Emilys webpage or send gas/grocery gift cards to help. We continue to think everyone as we continue on with this journey.

I found a picture of our family dated 12/5/2010 this was just 18 days before she was diagnosed and 13 days before she went into the hospital because we didn't know what was going on, 

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. 

#neuroblastoma

#neuroblastomasucks

#emilysjourney

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

EMILYS 2ND ANNUAL BANDAID DRIVE

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!

#emilysbandaiddrive 

#emilyhubbeldotcom

What Does the Fox Say?

Ring-ding-ding-ding-dingeringeding!

Gering-ding-ding-ding-dingeringeding!

Gering-ding-ding-ding-dingeringeding!

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. 

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

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.

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!!!
www.emilyhubbel.com
www.facebook.com/emilysjourney