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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Sunday, November 23, 2014

ER Visit Today




Yesterday morning Emily woke up very lethargic. She laid around most the morning. Mommy had a run with two of Emily's aunties and a good friend to run the Dunkin Donut Munchkins Race for ASK Childhood Cancer Foundation. I was thankful to have 2 sisters and a good friend who wanted to run for such a good cause and we stayed together which was amazing.  Daddy and the girls stayed home to cheer us on because it was a pretty cold morning. I did have to walk some but for someone who doesn't do runs except for exercise at home was happy with 36.02 for a 5K and I happy to cross it with Emily's Auntie and Good friend. Emily's other auntie had already ran a 5k earlier so she was tired and came in after. Thank you guys for running for Emily and all the other kids with childhood cancer. Thank you guys again for being a part of this for Emily, it really meant a lot. #running4Emily





When we came home Emily still wasn't feeling great, but was starting to come around. We spent the afternoon with family and then had some things to do.  Emily was pretty exhausted so when we got home she just wanted to cuddle with mommy. As she was laying there I realized she was burning up. Fever 103, GREAT!! We continued to watch overnight and this morning another fever of 101.7! Too dangerous to play with and not knowing what is going on. Called the on call and they said to bring her in. We brought her in, fever was down, imagine that?  They did labs, cultures and gave her an antibiotic. Counts are dropping again with WBC dropping and platelets dropping. We know platelets will drop with fevers and WBC dropped again since Friday. So, we are hopefully that she is just fighting something.  They did send us home, which is a plus and Emily was really happy to hear because she was worried they were going to keep her. She was also upset about even having to go because she was worried with getting her port accessed.  But she did ok. Thank you all for all the thoughts of Emily while she was at the ER.  Of course fevers make us worry, it us cancer parents that always have the worst thoughts of what fevers could be. So we will continue to hope it's just a childhood virus or cold she is fighting,

She had a birthday party to go today to one of her best friends! and we told her to be safe she should not attend.  We are glad she didn't because she has been very exhausted tonight. But we let her drop off her gift to her before her birthday party and it made both of the girls days to see each other.  At 730 tonight Emily was already asleep. Temps are fluctuating between 99-100 so it seems it may be another night of watching her temperature, Emily normally remains on the lower side of temps. This normally means setting the alarm clock quite frequently thought the night to check her temp. So with the holidays coming up, we have decided to keep the girls home from school Monday and Tuesday so that hopefully they will both feel ok and have a great Thanksgiving with family.


Please continue to keep our girl in your thoughts and remember to hug and kiss your kids and tell them how much you love them. 

Friday, November 21, 2014

Clinic Visit


Emily had a clinic visit today!!

They did a count check for labs, checked urine markers and vitals. Emily gained almost another pound which is great! Her blood pressure was up today and we haven't seen a high blood pressure in a while. Dr Gowda wants Emily to have an echo within the next month to see if anything has changed since we have not had one in 2 years! Labs came back and WBC, platelets and ANC have all dropped a little bit, nothing of huge concern, just gotta watch the trends and see what is happening. It is odd that they have dropped but they are all still in good numbers that Emily is fine.

We did talk about ferritin levels which are high but he explained that they are most likely high from many transfusions and some of the chemo she had he said if they continued to go up he would need to give her medication so it would not affect the liver.

HMA/VMA will be back next week sometime so we wil be able to see her urine numbers and how they are looking!

Next week is Thanksgiving and we look forward to spending time with family! It will be nice to have family time. We hope all of you have a wonderful Thanksgiving!

Don't forget you have until November 30th to collect bandaids for Emilys 3rd Annual bandaid drive! She was so excited to see Frozen Bandaids because we know so many girls love Frozen. After talking with the clinic today we heard that they don't see a lot of boy brand bandalds and horses. So if you want to help out you have until the 30th to send to our PO Box.

We leave Monday, December 1st for scans!! Don't forget to wear your Emily gear on December 4th the day Emily has her scans and we get results.. Continue to keep Emily in your thoughts!


Remember to hug and kiss your kids and tell them how much you love them.

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. 







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