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 19, 2013

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.  


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. 


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!

Wednesday, December 11, 2013

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,