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

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#hope

#DFMO

No Transfusions This Week

This was the first week that Emily didn't need any transfusions (blood or platelets)! Woo hoo. 

Emily had clinic yesterday. Dad too her to clinic and she did well. Blood pressure is still looking good. First Pass Image Scan (nuclear heart scan) that was done on Tuesday came back fine so we know that her heart is doing fine. Heart rate is still very high though with yesterday being 147! Platelets did drop from 42 to 33 but we are willing to wait as was Dr Gowda to see how she would do! Hopefully they will start to come back up on their own again. Dr Gowda did say he was going to let Dr Bunchman know about Emily's heart rates because he still continue to wonder/worry if it has something to do with her kidneys.  So we are supposed to be meeting with Dr Bunchman again in a couple of weeks and we will just keep a watch on her heart rate! She also had Day 28 on DFMO to report information back to Michigan yesterday as well!

Emily will return to clinic on Tuesday for count checks and see where things are.

Good week for Emily though. She is doing really well. Earlier in the week she had some hip pain but we all think as well as Dr Gowda it's just her bone marrow working hard! Thursday night Emily was honored as "Student of the Year" for her school for Kindergarden through 2nd Grade! We had a banquet in Thursday night where she was honored along with another student for 3rd - 5th grade as well as all the others from the other schools! It was really a big deal for Emily and she was so happy and did really well! Dad and I were super proud of her and for her accomplishment even with all she is going through!

Michigan did contact us and said they are working on scans for the week of May 19th, so right now we are just waiting to get the confirmation of it but. Our plan is to continue to keep her on DFMO as long as she remains stable! Once we keep her counts up we also hope to get her back to school. The hope is to her counts up and stay up so that we can get her on the vaccine trial under Dr Lucas!

Please continue to keep Emily in your thoughts. 

If you live in the Massachussetts area there is a fundraiser for Emily on May 9th and 10th at a local restaurant if any are able to make it. We appreciate all the love and help!!

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

End of the Year Scans

So we are on our way to Michigan. UGH!!!!! Last night we made it to our half way point. We are always thankful to have our wonderful friends Sue and Jojo in Pittsburgh, PA (our half way point) who always have dinner ready for us. Thank you! Today we will travel the rest of the way to Grand Rapids, MI. Thankfully we were able to stay in the Renucci House this time.

December 23 ", 2013 we will be reaching Emily's 3 year mark of battling with this disease. December 18, 2010 was when the journey started and we didn't know what was wrong.   December 23, 2010 she was diagnosed with stage IV neuroblastoma and we weren't given great news for outcome. November 16, 2011 when Emily was going to CHOP to start antibodies, we learned that she had another spot on her lumbar, L4, which was progression. December 20, 2012 after Emily had 3 rounds of the compassionate antibodies, Emily progressed with several places including her skull and more spots on her back.

So here we are in November again! Scans at the end of the year! Why did I tell you all that? Our anxiety is off the roof right now. The end of the year we tend to have news we don't like. News that takes us to other places. Sleep isn't happening much, no patience in sight, and just all the fear.

So, scans are Thursday! Here are the Appointments coming up:

Wednesday, November 13:

--1030am for port access and CBC 

--1130am MIBG injection

--most likely head back for platelets if under 30

Thursday, November 14:

--1030am MIBG scan 

--1230pm meet with Dr Sholler to go over results 

Thursday if you have Emily gear, please wear it. Take pictures and post them on Facebook tagging Shannon Hubbel, or post to Emilys Journey (www.facebook.com/emilysjourney) or email them to me at shannon@emilyhubbel.com. I will post them in an album on Emilys Facebook.  Please send all your love, positive mojo, prayers and thoughts for stable or better....

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

Update on Michigan Trip

We are on the flight heading home listening to the girls giggling! It's a beautiful day outside and we understand the weather is warming up at home!

Dad has being doing a lot of reading on homeopathic and things to give Emily with hopes of getting rid of this NB! We have gone back to completely organic food again, dropping red meat, and making things from scratch and eating a lot more organic fruits and vegetables! Some things that he read and found to have helped, we are adding to her regimen but they are natural so it never hurts! Obviously with the DFMO Emily is not able to eat many things with polyamide but she seems to be doing really well with that but is read to be able to eat other things!

Our trip to Michigan was short but long with lots off anxiety and fear of what we would hear. Emily's energy is unbelievable right now which is amazing and we are enjoying every bit of it, watching her dance, laugh, run and play!! This is energy we haven't seen in 2 years and we are loving it. Her weight is at 31 lbs which is the first time since diagnosis 2 years ago she has been over her diagnosis weight, yeah Emily. Even if only over by a pound it is still the first time and we are happy to take that, the more energy and food the mor she has to fight.

Tuesday Emily had her port accessed and injection of MIBG isotope. I noticed after they gave it to her it was really quick and I even commented on it but she indicated that she received the amount required per her weight and height. Scans were scheduled for the next day over 24 hours which we know before they always wanted them within 24 hours!

Wednesday Emily had her scan and as always Emily sits perfectly still and has no problems! This time during the scan she listened to Justin Bieber and Katy Perry and was happy and content with listening to it! This little girl always seems to amaze us! We are always so proud of her! Afterwards she had her counts checked and VMA/HMA and LDH checked and then she was deaccessed. Her platelets are 43 so still hoping to get those up but everything else looks great!

We enjoyed an afternoon of down time in the family room of the Renucci House of making a home cooked lunch and just hanging out! It was nice to be away from the room and just hang out! Later we met up with Brooke and Jessica and spent a good 3 hours with them, with the girls playing and us just hanging and talking! It was nice!

This morning came so quick and we were nervous! Thank you to everyone who texted and emailed! Your love and thoughts go a long way and we certainly appreciate them! Dr Sholler went over the scans and basically her scans from about 3 weeks ago are stable! So thankfully that means No new disease, and some of it appears to be decreasing in uptake and other places appear to have more uptake! The newer spots appear to have more uptake! As of today we are heading home with them working on scheduling scans for first week of February coming back in a month. There was notes in the scans report that there is a patchy spot which is in the soft tissue going over to bones that could or could not be disease with , she didn't feel it was at this time and that it notes these areas would need follow up! So she indicated scans in a month would be a follow up to that but she didn't "think" it was disease! While Doug and I expected more progression , we are "ok" with stable! But we aren't happy with increased uptake in the newer areas and concerns of other things! Right now, we don't want to give NB a flying chance in hell to grow anymore than what it is and then take over and we have no control! Thankfully Dr Sholler is happy for Emily to continue to have scans in Michigan if we decide to go another route! One of our biggest concerns besides the growth of this disease and Emily's well being is doing scans back at home and getting false information from the scan like we did in August of last year!

Our home doctors has a plan of what he feels will be best and Dr Sholler has a plan of what she feels will work! Doug and I haven't made sound decisions at the moment just because we would like to go over the most recent scans with Dr Gowda and get his opinion again! Dr Sholler will also be looking into a vaccination trial that we were talking to her about!

We still have a lot of fears for tomorrow and what could come, making decisions as to what is best for our daughter is definitely overwhelming! It's pretty painful actually because if side effects but Emily has so much fight left in her and with her getting stronger we know whatever we decide that Emily can handle it!

Please remember to always hug and love your kids as much as you can! Will update more as we know more.

We have safely made it home, again thank you to the wonder Wings of Mercy and all they do!!!

Question Answered

Emily's clinic visit went well yesterday, all of her counts are looking good. She didn't need platelets since they are at 34 but they are still pretty low, hemoglobin is still on the low side of 7.9 where it has stayed all week, but Emily is in a great mood. Her spirits are wonderful and she is happy! Her sores are healing and she is able to put a bit more pressure on them. We learned that her sores were staff infection, we don't know the sensitivity of them yet, but the antibiotics that she is on will help take care of them. We haven't received the results back on the biopsy yet, but hopefully those should be back soon.

Everyone has asked the question..."does this mean she is done with treatment?" to answer that, "no" . Emily has one more round of the nifurtimox trial with chemo! She started her pills back up on Thursday and Monday she will start her 5 days of chemo! After this we will travel to Michigan for scans with Dr Sholler!

Our goal this whole treatment was to get Emily to antibodies and that is still out goal and we will fight for her to get it! Antibodies is supposed to get all the residual disease that may be dormant or hidden or any little spots left! So after scans and we meet with Sholler that is where she tells us what to do next and she knows we want antibodies so that is the hope!

While the news that Emily's scans were completely negative with not being able to see any tumor sites was a total opposite of what we expected and i'm sure everyone else, we still have to charge on. Let us be very very honest we were shocked and honestly didn't believe it, but that is because for so long we always had spots show on the scans! We absolutely love and are so happy with the results of the scans, and we are in complete shock and awe with our jaws just being picked up toff the floor that VCU can't see anything. So with the awesome news that VCU provided we are celebrating!!! While they say that their scans are not optimal as compared to the ones at CHOP or MI, they are clear and Doug and I will take these results and run with them. We have ran with them to a campground with our best friends Sue and Jojo!! However knowing we could go to HDCH (MI) and show a little bit of spots (possibility bc we have to be real) but we are still so happy our little girl has fought as hard as she has and look where she is today!

Many of you have said Emily is a hero, Emily is a fighter and she fights so hard and will continue to do so for the rest of her life! But we need lots of heroes out there, do a good deed, donate blood! Emily is a princess fighter and she is one amazing fighter!

We are in complete awe at all of the wonderful people, all the beautiful words and happiness that have been left, that we just can't thank all of you enough.

So as of now we have met our besties sue and Jojo to camp for the weekend! Sue and Jojo thank you do much for traveling to celebrate this amazing wonderful news that we have received! We are so happy to have you guys in our lives!

Scans Update

Today has been a very long day with lots of anxiety!! Emily and/or Brianna crying and just full of anxiety all around!

Results: Scans have appreciably decreased in uptake! The report indicates all of the areas demonstrate decreased uptake as compared to previous examination with no new areas of abnormal MIBG uptake!

This is good news according to Sholler, however I think the report of her catechlomines (HMA/VMA) being normal we thought for sure we were going to see clear in some spots, so in some ways we almost felt let down! However, let me just say we are comfortable with where she is at, no progression but so wished we saw more clearer scans!

The official report is "stable with clinical response"! Which means all of the spots are still visible and there but with less uptake!

Dr Sholler would like for Emily to continue on the trial and do 2 more rounds of chemo and have scans and see where things are then! However this time during chemo have Emily take 3 pills of nifurtimox and then when chemo is done go back to 2 a day!

I have to be honest here, we are now almost into 17 months of treatment , and treatment along with scans, being accessed/Deaccessed has not gotten any easier! Actually it has become harder and harder on us and Emily as well! Emily asks a lot more questions that we have to answer and now she has anxiety and fears over upcoming things that is different for us to handle! But this has gotten harder, we are exhausted from everything and our patience, minds and body can only handle but so much! In Emily's words today, "I'm tired of this!" we are so there with her! Scans really take a lot out of parents and bring out the worst in you, so this day by far has been really hard on Doug and I! The biggest part here is that some of the kids that started treatment around the same time as Emily and after are done with treatment and Emily is still at it or there are others who are not doing well and didn't make it and here our Emily is still fighting! This disease is a beast which is so obvious as hard as Emily has had to fight!

Today Emily also had labs done and her platelets had dropped pretty low from Tuesday's check, so she needed platelets! Her hemoglobin dropped a bit too, not requiring blood but it did drop a bit!

Emily will start round 3 May 21st as long as her counts indicate she is ready to start and count checks next week at home clinic! May 20th we will be celebrating her 5th birthday with a birthday party at home! She actually turns 5 on May 30th! Emily loves mail so if you would like to send her a card, you can send it to her at PO Box 5383, Midlothian, VA 23832!

Sorry if this update was a bit on the down side, but for me I went in today with very high hopes, and I know that Doug did also! High hopes of seeing some clear spots or even gone and all the spots are still there just with less uptake!

Emily we love you with all of our heart and can't wait to celebrate the NED party! We are all tired of this but we still think we can get you there to clear/NED! You are doing such a great job and mommy and daddy are so proud of you!

We head back home tomorrow with Wings of Mercy, an amazing organization with wonderful volunteers who have such big hearts! Thank you! The plane was a bit small to our liking and a bit more bumpier, loud and tight so we were quite happy to land! We had thought about getting a rental to just drive home, but it is just to expensive and I think we all just need to get home!

Well time to end this, we have an early morning tomorrow! Make sure you hold your kids tightly and tell them how much you love them!

Scanxiety Day -- Day 18

It's scanxiety day! To say that we are not nervous, don't have lots of anxiety would be lying because we do! This scan will tell us where we are going moving forward! Our hope is that there is less intensity in the spots or clear and most of all nothing new!

We gotta run the kids around so Emily will sleep during the scan and not move!

We will keep you updated!