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, August 21, 2014

Some News

I will make this short and sweet!


Emily's scans came back great. We never receive good news and today we did. We needed this news because we worried so much!


Emily's scans came back as stable with decreased disease and some spots even gone. That is right...great news. They were not worried about the tummy pains or dizziness because they didn't see anything and scans do not show progression. 


All the thoughts you guys put out for Emily proved to show all the love she has and she is one strong girl and she has her mom and dad to back her and fight with her. Thank you for all the love you send and all the thoughts you send because each one means so much. 


Dr Sholler looked at us and said "whatever your doing keep doing it!"



Now we ask for you all to keep Brooke Hester in your thoughts because they didn't receive good news today!!!


Tuesday, August 12, 2014

Scans Coming Up

Emily has clinic tomorrow for a count check, urine check and for the doctor to get a visual from the information that we have let them know. Emily is doing well, but we still have complaints of some pain or dizziness and/or headaches. With travel coming up our anxiety of scans is pretty high! We really want stable or better and will continue to hope for that but that fear that lives inside of us is so hard to explain. Please continue to keep Emily in your thoughts! 


We head out Monday the 18th to travel half way and then drive the rest of the way on Tuesday to Grand Rapids. Scans are scheduled Wednesday through Friday with a Hearing test scheduled in there. We also know that has to have gotten worse. We don't have a plan of action for next steps should things be different but know we have to keep it in the back of our heads.


If you would like to help with gas for traveling please send gas cards (shell, pilots, sheetz, BP) to 

Po Box 5383

Midlothian, VA 23112

We are able to pick up mail through Saturday the 16th to pick them up.


Thank you for continuing to keep Emily in your thoughts, and for continuing with us on this long journey!


#neuroblastomasucks

#emilysjourney

#emilyhubbeldotcom

Thursday, July 31, 2014

Update on Emily ~~ Some Concerns

Update on Emily: so she has started her 5th round of DFMO. The longer she has been on this the more nervous we get. She looks great and she has gained a great a bit of weight. The last HMA/VMA that she had done on July 18th the numbers were elevated from the last ones. So dad took her in today to have them checked again and we should have them back in a few days.


We haven't updated that since about July 15th Emily has been complaining of pain in her stomach and dizziness. It is random but happening at least once or twice a day. And the past few days she has been complaining her back hurts. This of course makes us worry. So we let Dr Sholler know and she recommends Emily coming in todo scans the week of August 18th instead so we can see what's going on. We are so hopeful that it is nothing but the complaints certainly worry us!!


So this is where we are for now. Overall Emily looks great just the complaints has us concerned!


#emilysjourney

#emilyhubbeldotcom

#neuroblastomasucks

Saturday, June 21, 2014

Round 4 DFMO

Well we are starting Round 4 of DFMO. Emily had clinic on Thursday to check counts, do a physical and HMA/VMA! Got to meet with Dr Gowda and had not seen him since scans at end of May. Counts looks great so there is no worry there.  He did say he looked at Emily's scans and based off what he read with the spots being brighter more intense and only one of them not as intense he said they would have called it different than stable.  He said he emailed Dr Sholler and she indicated that on the DFMO trial a patient cannot continue unless there is major growth to a spot or a new spot.  So with that Dr Gowda wants Emily to have her

HMA/VMA checked every two weeks. He said this is the only way to really check without scans until August. He said he felt that if they go up during those times he will do a recheck and then of still up ask for scans earlier. He asked that we just to be on our toes for another trial should something happen and we normally always are.  Overall though Emily is doing great! 

 #neuroblastoma #neuroblastomasucks #emilysjourney #emilyhubbeldotcom 

Sunday, June 8, 2014

Emily Update

Emily is doing great! The current treatment she is on (DFMO) gives her the best quality of life! We are hoping that this treatment is getting rid of the rest of the spots she has!!! But we are happy she feels so good and has energy to enjoy the summer and play with her sisters! She deserves it. We don't have to visit the hospital as much either, her counts look great! Yeah for a treatment that gives her time away! Her hair is taking forever to grow and we are sure that is probably the dfmo!


She will be going to summer school at the end of June to keep up her skills! 


#neuroblastomasucks #emilyupdate #emilysjourney #emilyhubbeldotcom 

Friday, May 23, 2014

Emily Update

Sorry for the delay in updating! Lots of driving!!


Emily did well with scans! Thankfully all of her counts are looking good, platelets did drop but only by 5 points so we are not too worried about it!

We met with Dr Sholler and Nurse Practioner Shannon after the scans and they are happy with how well Emily looks. Her hair is taking longer to grow in but we are thinking it is because of the DFMO! It can cause thinning of hair.  Hearing test have to be done every 6 months so when we go back the next time she will have another hearing test.

Scans are stable. Final impression : increase in amount of avidity/activity at multiple spots including the spots, spine, pelvis and proximal femur. It is especially noted in the left orbit. Mild decrease in right iliac. 

For now we will continue with DFMO and have scans again in 3 months. We will watch her HMA/VMA urine at home but right now they are the lowest they have ever been. Although when she progressed in December a year ago her numbers were not up. 

Dr Sholler did go over another trial with us that is DFMO with velcade. It just opened a week ago so we may think about doing it later but for now we feel this is best to keep her on just DFMO! She too was ok with us continuing on just DFMO being that she doesn't have any new spots. 

Emily is doing great though so we are happy with where she is right now. We will continue weekly visits to clinic to check counts and hopefully once they feel they are stable enough we will move to every two weeks but for now once a week. 

We are now spending time with family for the Holiday , have cake for early birthday for Emily!!  Emily will be 7 May 30 and she is excited Icing Smiles will be making her a dream Frozen Cake. 

Sorry again for the delay.

Tuesday, May 20, 2014

Michigan....

We made it to Michigan safely last night! Today Emily had clinic and Mibg injection! Today was a great day, Emily's counts are still looking good... Stable from last week, so we are very happy about that..

Tomorrow she has Mibg in the morning and then we meet with dr Sholler in the afternoon. We hope to remain stable and continue on DFMO! Wear your "Emily Gear" tomorrow!


#neuroblastoma

#emilysjourney

#emilyhubbeldotcom

#hope

#DFMO