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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Saturday, November 15, 2014

Scans Soon // Bandaid Drive

Gonna try this update again, started on this earlier, and I lost everything I wrote.  So hopefully this time, I won't lose it.  I was going back looking to see the last update, and the last update was in August, wow guys, I am sorry.  If you are looking for updates, we tend to update Facebook more often, so I apologize.  But you can go to Facebook at www.facebook.com/emilysjourney.

November 1st, started 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.

The last few months since we have last updated have been pretty busy. Emily, her sisters, Doug and I got to meet family that we have never met before.  They got to meet their grandfather and grandma (grandad and Mimi), great grandma, great uncle and aunts and uncles.  The girls have definitely loved meeting them and enjoying spending time with them.  There is still plenty of family that we have not been able to meet, but in due time.  The best part of meeting family that we have not met is having a bigger family and also that they are behind Emily's Journey and supporting her.  The last few months we have had a few clinic appointments as well as eye appointments and kidney and liver checks.  Her counts are looking great and continue to go up, actually the last clinic appointment her platelets were 193. WOW.  That is amazing.  She was having lots of headaches that she was complaining about, so we had a couple of eye appointments and determined that she needed glasses, and since having them she hasn't been complaining as much, only hear and there.  So that makes us feel better.  She was pretty nervous at first about having the glasses and wearing them to school, because she thought the kids were going to make fun of her, but she hasn't had any problems and she looks great in glasses.  Her kidney and liver numbers continue to look ok but we also check her urine markers.  Those too have seem to remain stable since our last time in Michigan.  She does still complain of dizziness from time to time with the headaches.

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. 

Right after Thanksgiving, we have scans in Michigan at Helen DeVos Children's Hospital.  So we will be ready for travel to leave VA on Monday, December 1st with a stop over in Pittsburgh, PA and then continuing on Tuesday, December 2nd to Grand Rapids, MI.  She will have clinic with accessing her port, labs and urine markers, as well as hearing test and MIBG Injection on Wednesday.  Thursday she has her MIBG/CT scan and we meet with Dr Sholler after scans for results.  Depending on results she may have a PET/CT scan schedule with bone marrow biopsies.  We continue to hope that her scans are stable or better and that she can continue on her current trial of compassionate use of DFMO.  So we are heading for another 1500 mile drive, so if any of you would like to help with Gas Gift Cards, they really come in handy in our travels (Exxon, Sunoco, Shell, BP, Sheetz and only a few of Wawas are definitely ones that we pass), or grocery gift cards.  These would definitely help with our travels and definitely thank you guys so much for all of your help.  If you would like to help, please mail them to: Hubbel Family, PO Box 5383, Midlothian, VA 23112.  If you have any questions, please email me at shannon@emilyhubbel.com.

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. 

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