Emily's Journey's Most Recent Facebook Post
Sunday, November 23, 2014
Friday, November 21, 2014
Saturday, November 15, 2014
Emily's 3rd Annual BandAid Drive. Emily's bandaid drive started 3 years ago, which is so hard to believe. We started this because one day we had clinic and Emily had been poked and was wanting a cute bandaid, which always turns the frown of getting a shot or poked into a smile, the clinic was all out of them and they had to give her a brown bandaid. I remember asking the nurse why they didn't have any character bandaids and she said because the hospital only purchases regular ones and character ones are donated but that they normally don't get many. Emily said she wanted the clinic to have character bandaids for all of her friends so that they could all smile and this is what started the bandaid drive. Every year it has become more successful and we have added in other hospitals each year to help out as well. The first year we collected about 3000 boxes and the majority of them went to Childrens Hospital of Richmond, but some of those went to Childrens Hospital of Pittsburgh and we also sent quite a few of them to New York for Hurricane Sandy Victims. Last year we collected just a few over 5000 boxes and many of those boxes again went to Children's Hospital of Richmond, Childrens Hospital of Pittsburgh, University of Virginia Childrens Hospital, Childrens Hospital of the Kings Daughters and Renucci House in Grand Rapids, MI. We have a few boxes left from last years that we will be taking to Helen DeVos Children's Hospital soon. If you are interesting in bringing a smile to all the kids fighting in hospitals who have to get poked, please send fun, character, colored bandaids that are any shapes or sizes and if possible latex free still intact in the boxes to: Hubbel Family, PO Box 5383, Midlothian, VA 23112. I promise you the bandaids definitely go to good use to our hospitals and the kids love them. Please keep spreading the bandaid drive and send a few boxes in. We would love to see the drive get more than 5000 boxes this year. There are so many schools involved, many veterinarian's offices, small doctors offices, and many other places. Please help if you would like to bring some smiles. They definitely bring smiles to Emily to help the hospitals.
This is the first year that Emily has been able to go to school everyday. She is in 2nd grade, but has never had where she has been to school everyday and both Kindergarden and First Grade she was at home more than she was at school. She is definitely enjoying the fact that she is at school and getting to meet other kids and have more friends. She loves her friends and enjoys having playdates with them. The biggest thing that Dad and I are noticing is her short term memory. She forgets things that happen during the day very easily. She also said she has noticed that she can't run as fast and keep up with her friends. But again she is happy to be attending school and only having to go to clinic a couple of times. Dad definitely enjoys going to have lunch with the girls as often as he cans, and also does WATCHDOG at the school where he is there all day and can spend some time with the girls in their classes. It is nice that he can do this though, because he can really see what is going on at at school. Overall though, Emily's quality of life has been great and we are so happy with where she is. We continue to hope that this is how things will stay.
We have a busy rest of the year coming up though. Thanksgiving is coming up and the we are all excited about getting to spend time with family that we don't get to see often, so we are all very excited about this.
Its hard to believe that on December 23, 2014Emily will have been fighting neuroblastoma for 4 continuous years. This girl continues to amaze us and all that she does. And she continues with a smile. She asks us often when she will be done with treatment and when she can take her port out, and Dad and I both wish we had an answer for that, but we continue to tell her that she is doing a great job in all that she is doing. Please continue to keep Emily in your thoughts as we are coming up on scans. Anxiety is going to start to build as we get closer and closer to scans like they always do.
Please make sure you hug and kiss your kids and tell them how much you love them.
Thursday, August 21, 2014
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
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!
Thursday, July 31, 2014
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!
Saturday, June 21, 2014
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!
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