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 4, 2014

Stable Scans

Once again scans are stable!  Two of Emily's spots have an increase of uptake and one of the spots is gone. Dr Sholler again offered if we wanted to do the other DFMO trial with chemo we could, however we decided to keep Emily on the Conpassionate Use of DFMO trial she is currently on. There are no new spots and none of her spots are bigger, so we will take stable!

While we continue to long for NED and to hear those three words No Evidence of Disease that so many other families hear , we are happy that Emily continues to thrive! She has been complaining of back pain when she bends over, but we are not seeing anything to accompany that pain. Emily can go to school and have friends and enjoy things, so we are happy with that. She wants to be done with treatment and we too long for her to be done with treatment! 12/23 marks 4 continuous years of treatment with no stops and she deserves to have this one day! We had hoped we were going to hear those three words though because we wanted to have a huge party to celebrate all that she has been through!! One day we will hear those words, but for now we will continue to hold her hand and fight with her!

She heard her friend Molly, that we had lunch with, was done with treatment and that she was NED for 34 months. She said she wished she was done with treatment like her but that she was so happy for her and that she deserves
 it. Emily always amazes us with how strong she is and how she is happy for her other friends!

So for now Emily will continue on the DFMO trial and we will come back to Michigan for scans in late February or early March! Dr Sholler is happy with how she is doing so we wll continue on. 

Please continue to keep Emily in your thoughts. Also remember that we are still collecting bandaids until December 15th, so send them on!! I don't think we are going to make the 5000 boxes this year but we are happy with how many people have helped and continue to do so!

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

Wednesday, December 3, 2014

Long Day

Today was a long day at hospital...Emily had clinic for accessing her port and checking counts. Her counts came back and they are starting to come back up so it tells us she was fighting something about a week ago.   We should get results tomorrow of urine markers!

In between clinic and injection we met up with another neuroblastoma fighter , Molly and her mom Trisha and Dawn whose son lost his fight with neuroblastoma, superbub! It was great seeing you guys today!! Then we had injection and had lunch with Molly!  Emily also had her hearing test! Hearing test shows no significant change which we are very happy to hear! She is only a few decibels down from where she was last time so if we want to go the route of using an FM system we could do that if she needs more help at school. 

Tomorrow Emily goes back to clinic at 12pm to get accessed again and then she has her MIBG/CT scan at 1pm! We thought we would have to wait till Friday to get results but Dr Sholler will be able to get them so we meet in the clinic around 3pm!! It will probably take longer to get them but we will see!

ScAnxiety is definitely here so please wear your Emily Gear in support of Emily and send your love and thoughts!

Tuesday, December 2, 2014

Michigan Bound

We all had a wonderful Thanksgiving.  This holiday we were able to spend time with Doug's family in Massachusetts, which we haven't been able to do in quite some time.  Emily loves spending time in Massachusetts. 

Its the little things in life that we are realize are big things.  Spending time with family who loves to spend time with us.  We got to spend the weekend with Doug's sister Tricia and she made Thanksgiving and had Doug's dad over.  It was wonderful to see the rest of the family and enjoy spending some time together.  Best of all, it was spending time with family that meant the most, again its the little things, but you realize family is such a big thing in life. We thank all of our family in Massachusetts and love and miss you guys already.

Emily continues to do well.  We did get an email from Dr Gowda before Thanksgiving last week to let us know that Emily's vitamin D levels are low and to start her on a supplement during the winter.  So we did start her on that over the weekend.  Hope we will see her numbers starting to come up when they are checked in Michigan tomorrow. 

Yesterday we had our first leg of our trip to Michigan and stayed with our good friends in Pittsburgh, PA. Again thankful for the little things that we have such wonderful friends to give us a warm place to stay, warm dinner to eat when we arrive and a place to sleep for the night to rest up for the rest of 2nd leg of our trip.  Thank you guys so much for being such wonderful friends.  Last night the girls also celebrated Christmas with them since we won't see them around Christmas time and the girls enjoyed opening gifts. 

Today we are on our way to Michigan, and we have about 157 miles left of our trip.  We were going to bring the camper like we normally do, however Doug's truck was acting funny and with the weather we felt it was safer to just bring the van.  Because we were late in getting some place to stay, we ended up having to get a hotel close by. So we should be arriving around dinner time to the hotel for the night as long as traffic isn't bad.  We are thankful to those who helped with sending gas gift cards, it really means a lot. You can also donate through Emily's blog if you wanted to help while we are here.  Again thank you to all of the support, it really means a lot to us.

Tomorrow Emily has clinic to get accessed and check counts and then she has MIBG Injection and then she gets her hearing checked.  We haven't had her hearing checked in quite sometime and we know her hearing has suffered a bit more. We are hoping that her counts are coming back up from where they were down from about a week ago. Tomorrow night there is a "Frozen" party for all the kids from Helen DeVos clinic.  Its a play put on by all the nurses from the clinic, so it should be a good time for the kids. 

Emily's scan is on Thursday at 1 pm, so our scanxiety is building up for scans. If you have your Emily gear, please wear it to support Emily and our family as we go through scans.  Scans are about a hour and a half.  Because they are later in the afternoon we are not sure if it will put us meeting with Dr. Sholler on Friday morning or not.  We are waiting to see with that.  PET scans and bone marrows will be scheduled if there is any progression.  We are hopeful for stable and more specifically better than stable.   We know Emily looks great, but we also know Neuroblastoma is a monster and can happen at anytime and we want this monster gone from her body.  She deserves.  We remain hopeful to hear that one day she is NED and if we ever hear those words, we can promise you there will be a BIG NED party for her. 

We will update more tomorrow after the day, but please keep Emily in your thoughts and remember to hug and kiss your kids and tell them how much you love them. 

Monday, November 24, 2014

Emily's 3rd Annual BandAid Drive

Don’t forget that Emily’s 3rd Annual BandAid Drive is going on right now. It started on November 1st and going on through November 30th, however we will accept them through the middle of December when we present them to the hospital. Emily’s Bandaid Drive started 3 years ago when she was in the hospital and had been poked and the nurse went to put a regular bandaid on her.  Emily wasn’t happy about the boring bandaid, so I asked why they didn’t have any fun bandaids, only thinking that they didn’t order them.  The nurse explained that the hospital does not buy these, and that they are donated, but they normally do not get enough donations to make it throughout the year.  When Emily heard this, she wanted to help the hospital collect bandaids and this started our bandaid drive 3 years ago.  The bandaid drive continues to grow each year, and many local schools have become involved getting the children involved and many local shops, vets and doctors office help. But because Emily has a blog and many people from everywhere follow her blog, we also started working with smilemakers.com 3 years ago and they have a special from November 1st through the 30th, if you use the code Emily10, you will get 10% percent off bandages and free shipping.   If you want to help out Emily with her 3rd Annual BandAid Drive, please mail your bandaids to : The Hubbel Family, PO Box 5383, Midlothian, VA 23112.  Each year we have been able to help more hospitals with bandaids.  Thank  you so much for your support in helping Emily continuing to bring a smile to all the kids fighting in the hospital.

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.