Scan Update

Long couple of days but they are behind us now and we are heading to spend some time with Doug's family for a little bit and then head home.  Emily was only accessed once yesterday but we made sure that didn't happen again. Emily did awesome on her scan sitting very still and not moving but she always does. Today was the first day that she wore the video goggles the whole time watching the movie Frozen.  And she only asked one time during the scan how much longer! We are not biased or anything because she is out kid, but she really is an amazing. People meet her and they fall in love with her because she is just one loveable kid. 

After scans we had lunch with my dad and then went up to clinic and waited. We waited what seemed like forever in the waiting room since they were waiting for the scans to be read.  We were both pretty nervous with getting results bc of the wait time and worried after seeing the scans come across the screen from the MIBG. 

In April it will mark one year that Emily has been on the DFMO trial with such a great quality of life!! We want this to continue. She continues to go to school, enjoy her friends and in April she wants to join cheerleading through her school.  We want her to be able to do all these things and in May Emily turns 8!  Through the last 4 years of treatments, it's these little things seem so big!! She deserves it!!!

Overall scans are stable with some of her spots having a mild uptake and some of her other spots having a mild decrease in uptake. There is one spot on her back between T5-T7 that Dr Sholler has some concern about that seems to have a bit more uptake than many of her previous scans. Emily does not have any new disease which is definitely a good thing, but Dr Sholler would like Emily to have a PET scan done at home and have the scans sent to Dr Sholler to review. We will see about getting these done next week, because we would really like to know where things are.  We will get with Dr Gowda tomorrow and see what he has going on with getting this scheduled. If they are negative, we will continue on the DFMO and if they are positive we will need to get with Dr Sholler and talk about doing something else. We did talk with her about the velcade DFMO trial so we do have something in mind that we could possibly put her on, which would require us to make another trip to Michigan to start on this. Dr Sholler would like us to continue with what we have been doing but said if the PET scan came back positive we need to change some things up. We also talked about doing a bone biopsy on one of her tumors which could get more information about her tumors and see what is going on, but that would probably be something that we talk about doing for next trip. This biopsy would be like doing a bone marrow biopsy and would require sedation, but it would give us make up of her tumor, but it would not give us make up of her other tumors. Dr Sholler was very happy with how well she looked and was doing and her LDH and urine markers were all low. So we are happy with stable and we are hopeful that her PET scan remain negative. Once the PET has been set up we will update so everyone can send lots of love for Emily and thoughts!!

Thank you to my dad for coming and being there with us. It really meant a lot to us and honestly took off a lot of the anxiety and stress that we normally feel when we are there for scans.  The girls really enjoyed having you here to spend time with us.. Thank you! We hope you have a safe flight back to VA where they are calling for more snow and the schools are closed today. We are hopeful in many ways that school will be closed tomorrow so that the daddy/daughter dance that was cancelled last week and moved to this weekend will be cancelled and moved that the girls can go with Doug to the dance. 

We will continue to keep you all up to date on how things are... Thank you for continuing to follow along our journey. Remember to hug and kiss your kids and tell them how much you love them!

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. 

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. 

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!!!

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

Emily Update

Sorry for the delay in updating! Lots of driving!!

Emily did well with scans! Thankfully all of her counts are looking good, platelets did drop but only by 5 points so we are not too worried about it!

We met with Dr Sholler and Nurse Practioner Shannon after the scans and they are happy with how well Emily looks. Her hair is taking longer to grow in but we are thinking it is because of the DFMO! It can cause thinning of hair.  Hearing test have to be done every 6 months so when we go back the next time she will have another hearing test.

Scans are stable. Final impression : increase in amount of avidity/activity at multiple spots including the spots, spine, pelvis and proximal femur. It is especially noted in the left orbit. Mild decrease in right iliac. 

For now we will continue with DFMO and have scans again in 3 months. We will watch her HMA/VMA urine at home but right now they are the lowest they have ever been. Although when she progressed in December a year ago her numbers were not up. 

Dr Sholler did go over another trial with us that is DFMO with velcade. It just opened a week ago so we may think about doing it later but for now we feel this is best to keep her on just DFMO! She too was ok with us continuing on just DFMO being that she doesn't have any new spots. 

Emily is doing great though so we are happy with where she is right now. We will continue weekly visits to clinic to check counts and hopefully once they feel they are stable enough we will move to every two weeks but for now once a week. 

We are now spending time with family for the Holiday , have cake for early birthday for Emily!!  Emily will be 7 May 30 and she is excited Icing Smiles will be making her a dream Frozen Cake. 

Sorry again for the delay.

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

#emilysjourney

#emilyhubbeldotcom

#hope

#DFMO

Starting DFMO with Update

We are en route on our way home.  We were in clinic a little longer than expected, so after getting back to the camper and hooking up, we got a late start. We will be making a stop in Ohio tonight soon to rest and then staying in Pittsburgh tomorrow night. It's been hard because we haven't had internet to really update, so I apologize. But I do have to tell you, the camp Host at KOA was a great lady and was wonderful to work with. Thank you Theresa for being a great host. 

Emily had her MIBG scan yesterday and did pretty well. Her head was really hurting from the way she was laying, but she did well. Yesterday we thought she would have to go to clinic after MIBG scan, but she didn't so it was nice to go back and hang out at the camper and nap and enjoy time with kids. 

We had heard from Shannon, the nurse practitioner who was wanting Emily to get GCSF, we couldn't understand why she wanted it.  So we waited to talk with her today about it. We did get preliminary results from yesterday's scans yesterday as well, but didn't have everything back. She asked that Emily be in clinic at 8 before scan to check counts and see how things looked. 

Today She had her PET scan today and as always rocked it. Thankfully her glucose was fine this time and didn't cause a delay like it did in January. Shannon called with her counts and thankfully her platelets looked good from her Wednesday transfusion, hemoglobin is dropping and her ANC on Wednesday was 210 today it was 0!  Shannon said Dr Sholler would really like for Emily to get GCSF/neulasta shot because her bone marrow right now is not making anything, it is less than 5%. She said this is very dangerous and they would feel better that she have it. She did state again, please take Emily in to the hospital if she has a fever over 100.4 since we are driving. PET scan went well and she handled it well. 

We went back to clinic after scan, and talked with Shannon. Scans are stable with some spots brighter/more density.   They feel there is more density because her VMA in January was 8.2 and it has gone up to 11.2. We should have results from PET scan Monday hopefully.  If they are negative like they were before, like we were told before we know there is still cancer in her body based on numbers and scans.  After talking with Shannon, we decided it was best for Emily to get neulasta. Emily's bone marrow is not making any cells and they could see that from the bone marrow biopsy/aspirates. Dr Sholler was notified of this and she too was concerned.  Shannon also explained that when looking to see if they were positive for MDS and NB, they only had less than 5% of her cells to look at them, so depending on how things go she may order another one when she needs to be back in 8 weeks. We are still waiting for the final results of the bone marrow and for the cellularity and the cytogenetics. We wanted to head home and have stem cells given back to her but we need to wait on the final results to know if giving her the cells would even work at this point. If we gave them to her and some things don't look good, it wouldn't work. The final results which we are nervous about, can tell us if she has pre leukemia or anything else going on in the marrow.

Stable is good. We honestly have adjusted to hearing stable because that is what we normally hear, but it's positive when there is no new disease. It's still heartbreaking when you just want to hear those 3 magical words. One day, we continue to believe, one day.  HOPE!  Right now and for a while she doesn't qualify for any therapy because her bone marrow has been hit to hard.  Shannon stated Emily should not have been on the chemo with the way her marrow looked, but who would have known since we didn't have a bone marrow since last year. It's scary to think, but this is why Emily had a neulasta shot before leaving the clinic today. 

We started DFMO in clinic today and Emily is happy to know that she is no longer on chemo for now. Her body/bone marrow needs a rest. Emily showed Shannon she could take 2 pills at the same time. We went over everything again, and when Emily needs to be seen in clinic at home to get labs and physical done. We also have to make sure that if Emily has to go in the hospital for anything that the doctors let Michigan know in real time what is going on because this all has to be reported to the FDA since the drug is provided by the FDA. Right row Emily will still continue to make 2 a week trips to clinic at home until her counts have recovered. It's most likely she will need blood come Tuesday when she has clinic. And again since her ANC is bottomed out, if any fevers we are to head to the closest hospital. Please hope for no fevers.

Please continue to send your thoughts and love that everything comes back with good results. Emily needs a rest from treatment/hospital visits/clinic. She wants to return to school, she wants to do some "normal" things!

Remember to hug and kiss your kids everyday and tell them how much you love them. Things can change quickly. Thank you to all for continuing to be a part of her journey and spreading awareness of childhood cancer. 

Neutropenic Here in Michigan

We are all exhausted ... Late night last night to early wake up to be at clinic this morning early equals not a lot of sleep!

Emily stresses a lot when she has to get accessed here in Michigan because a couple of times they accessed her a couple of times with no blood draw! But this morning it went ok ... We figured she would need platelets since she had quite a bit of bruising on her legs, arms and head. As figured her platelets were 18 even after getting 3 units of platelets on Friday back home. Bad news her ANC is 0 again. Neutropenic in Michigan is not where we wanted to be... EspeciAlly if she gets a fever, we head inpatient here which is not where we want to be.  So we are staying away from people and hoping to keep her fever free! Dad and I are happy we brought the camper because she doesn't have to be trapped in the renuncci hospitality room (most likely without kitchen) and can move around our camper and also go outside and not be around a lot of people! 

Today was a long day... We didn't think we would see Dr Sholler this visit because we knew she had a conference of some sort this week. So this morning when she walked in, we were surprised. She was leaving within the hour to catch a flight to south cArolina to talk about dfmo! After catching her up and what information she had, she wanted an additional testing done for MDS from her bone marrow aspirate and biopsys that she had this morning. We talked about the DFMO trial because this is where dad and I feel would be best for Emily right now. Emily's bone marrow needs a break from chemo, she wants her hair to grow back and she needs rest from the hospital. The 2-3 visits a week along with Inpatient stays right now isn't where we want to be. Emily has been battling neuroblastoma for over 3 years with lots of chemo, it's time to give her a rest. Don't get us wrong we are nervous about this change to compassionate trial of DFMO worrying over her progressing again or bone marrow not start getting better but dad and I agree it's time to see how she does. Dr Sholler agreed she felt this was a good move. 

So papers were signed for compassionate use DFMO trial today, hearing test done and now we move forwArd to scans tomorrow with MIBG and Friday PET scan.

As for hearing test results showed she has lost high frequency hearing and it is more severe in her left ear.  They didn't feel that hearing aids were needed at this time but said that she may need a personal FM system to help at school. We noticed it yesterday in the truck with a lot of background sound and Brianna talking , trying to talk with her she could not hear. 

At this point bone marrow needs to be negative to start dFMO trial.  The compassionate use means she is on a trial but it is not as strict as the one for NED! She did well with the bone marrow today, and had a little pain after but handled it well. She also did well with all pre meds for platelets and platelets well. She hAd some coughing from the platelets but we have noticed that quite a bit lately!

While we have been here blood pressure has been looking pretty good. It did go very low during bone marrow but was explained pressures normally go down with sedation and hers are a little more lower bc of her meds that she is taking but nothing they were concerned about!

Tomorrow is MIbG scan so hopefully she does well tomorrow and please continue to hope for stable or better. Wear your Emily gear tomorrow or Friday (and if you don't have gear, wear purple and pink to show your support of Emily! 

Thank you again for loving our girl and supporting us! It means so much to our family!! Please hug and kiss your kids and tell them how much you love them!

If you are interested in helping with a fundraiser for Emily, check it out here: http://loveofcharms.origamiowl.com/parties/emilyhubbelsfundraiser231675/collections.ashx

There is also a Facebook Page you can check out for the fundraiser and a place to ask questions : https://www.facebook.com/events/276371519190331/

We are Home! With an Update

We are home today from Michigan. And oh my was it so cold there.  So cold that it hurt to even go outside. I'm sorry for not updating during the week, but it was a long week.

Not even in Michigan a day and Brianna starts throwing up Sunday night and is very exhausted. We had hoped it was random and just from the traveling, but by 6am Monday morning Emily wakes me up and says mommy my stomach hurts and I feel like I'm going to get sick. Poor thing, she had it pretty bad on Monday. It's horrible watching them getting sick and having no energy... Watching Emily get sick, only made me think of the chemo side effects. Brianna slept all day, as did Emily in between getting sick.  Dad made the run out to the store in the cold to get us food and hopefully something that the girls would eat. We were hand washing like crazy, because dad or I didn't want to get it and just pass the cycle over again. Unfortunately dad got it yesterday too. I felt so bad that he got it too. So far mommy has been in the clear!!

Clinic on Tuesday Emily ended up having a pretty long day in the clinic.  Emily was needing a bolus of potassium and sodium from getting sick her electrolytes were all out of whack. She also needed platelets since they were 23. Hemoglobin had also dropped a little bit from the week before too. 

Emily handled her MIBG scan on Wednesday pretty well, just had a hard time laying there completely still for a little over an hour. She said it was making her head hurt, but she did it and we are always so proud of her.  It's always amazing watching her and how she handles this.  Emily was on a low carb diet in preparation for her PET scan the next day. She really had a hard time with it, because she likes to eat bread and lately her organic hot chocolate. By Wednesday night, we had made dinner and Emily's face was pale and she was saying she didn't feel good.

 

Thursday Emily had her PET, and true Emily style, it always turn out there is always something. We walked over to the PET scan (daddy was completely exhausted and feeling horrible yesterday) and Emily was very lethargic. She couldn't hold her head up and couldn't keep her eyes open, her body was very floppy, it was kind of scary. The nurse checked her glucose and Emily's glucose was critically low she said. She said it was too dangerous to do the scan right then and that Emily needed to drink all of her apple juice and come back at noon. She drink it all and thankfully by noon, she was starting to come around. Her glucose level was just a bit under, but enough to get her scan. Emily did well waiting the hour from when the glucose was injected until aft her scan. Finally by 2 she could eat. 

Dad still didn't feel well by time we had to meet with Dr Sholler, but he made it to meet with her. Thankfully today daddy is starting to feel better but still under the weather.

I know everyone is waiting to hear results and at this time they remain STABLE with no change. We are happy with stable, but honestly we always continue to hope for more. We know it would kick her off the Texas trial if she were to become clear, but we still want to hear those words for our girl. Neuroblastoma is a beast and it can come back with a vengeance and we know this, so we keep hitting it.  We keep on keeping on. But honestly, over 3 years of fighting a disease that has progressed twice during treatment, we only hope to hear those three words, and that one day we can put her on the DFMO to keep her clear. But we are not there.  Dr Sholler said, "There is certainly still disease there, but keep doing whatever you are doing because it is keeping it stable."

So we are home...our nurse at VCU had been working on getting the Metronomics medicines approved by the insurance while we were gone, so she could start her new trial when we got home.   The four drugs included in this trial are etoposide, cyclophosphamide, thalidomide and Celebrex. Etoposide and cyclophosphamide would be given for 21 days and then thalidomide and Celebrex would be given the next 21 days. After these two rounds, we will go back to Michigan for scans.  The medications are quite costly even with insurance, but thankfully they were approved nonetheless, because without it would be awful. Only bad part is they are speciality medicines that have to go through Curascripts to be mailed again. We will need to meet with Dr Gowda this week sometime to go over this and how it will be administered

The hope with these new medicines is that they keep her stable obviously, but also help her platelets back up so that she can be ready for the Texas trial when they are ready for her.  We know it can supress the bone marrow resulting In her ANC and WBC dropping but shouldn't effect her platelets.  We do know every child is different with side effects, so hopefully Emily does well with it. Texas has everything that they need, Emilys bloodwork and all the paperwork. I heard from one of the doctors in Texas and it looks like that may not be ready for Emily until May or June. Anyone that lives out in that area, we are looking for the closest campground to Texas children's, if you know of any. We are wanting to get prepared.  So we continue to wait to get into this trial and we hope that the metronomics does what we intend for it to do. I will be honest though, with the new treatment plan, and removing Emily from the Avastin, I'm nervous, we are nervous. We can't ever go back to avastin, so it makes it hard because you just don't know what treatment will work.  There is no guarantee that anything works, so we really don't know if this will work. All we can do is HOPE! We also know she takes tumuric on a daily basis and one of the new medications she will have to stop the tumuric because it will cancel out that chemo.

Thank you all for your #snowpics showing your support to Emily and continuing to follow Emilys journey and being there along with us as we travel this road. Make sure you hug and kiss your kids and tell them how much you love them, no one can guarantee tomorrow!

Just a few photos that you all sent in, seriously they were awesome and really meant a lot to us.  thank you!!

Scans are Scheduled

                                                 

We received confirmation late yesterday of scans being scheduled, so now that we have dates, scanxiety is starting to set in. We will be in Michigan a little longer this time since we have added a PET/CT scan into the mix.  This should give us a little more information and what we are messing with. We have already scheduled Renucci House, so thankfully that is taken care of. 

Here are the dates, so I know many of you like to know what's happening, so you know how to send out your love and thoughts on those days.  And when you can wear your Emily Gear.

Tuesday, January 21 

--11:00 a.m. – Clinic appointment labs/infusion

--12:30 p.m. – DX-MIBG Injection 

 Wednesday, January 22 

--8:30 a.m. – DX-MIBG Scan

Thursday, January 23

--9:00 a.m. – PET/CT 

--12:30 – Clinic appointment w/Dr. Sholler – scan review

We have been spending a lot of time reading on the T Cell and all that is involved. Searching and reading. If any of the parents that have already gone through this read this, I would love to speak with you. Even though we had our phone consult it is always so much better hearing from others what they went through and the side effects that their children went through. Thank you would love to hear from you.

Although we feel really good about this promising trial, we are still looking into other trials at St Jude and other locations. We always keep an open mind.  But the hope is that since this is something new that she has never had that it works. 

Just a quick update of where things are and scans being scheduled.

We did keep Emily home from school yesterday because of her nosebleeds. She ended up having one yesterday morning, but hasn't had one since.  So we hope it stays that way for the rest of the weekend. 

Have a good Saturday. It's a rainy day here, so we are being lazy, but enjoying time together. 

Treatment Plans

Emily had clinic yesterday with dad, while mommy had an eye appointment. She was in there for quite a few hours for one because they were so busy and for two because her platelets dropped from 29 on Tuesday to 17 yesterday. So she needed platelets. We have this running joke that everytime daddy takes Emily to clinic she doesn't need platelets and then when I do, she always does. So the running joke was broken yesterday, lol.  Everything else looked ok and she finished her chemo Thursday night. She will complete this trial on day 15 (although it is 28 day trial) next Thursday, January 9th. Michigan said they are working on trying to get scans during the week of the 20th, however we have no confirmation yet because they are working on insurance approvals.  We asked that it be done as quick as possible as we hope to get Wings of Mercy to work with us, but lately they haven't had pilots that can work long distances anymore which has caused us to drive. So we have a feeling we will have to drive, so if anyone wants to help, because they are always asking sending some gas cards, because They are a huge help to us in more ways than you can imagine. 

Dad and I were talking because this round regiment was round 12 of the avastin trial (total of 26 rounds of chemo she has had all together so far) and she is done with this trial after day 15.  We had not gotten a lot of response from Houston, so I was going to make the call Monday morning to get things rolling. Funny story, I checked my email last night and received an email from Houston saying since Emily had already received a few rounds of Ch14.18/IL2 that we needed to make sure she wasn't HAMA positive.  Dr Heczey from Houston who works with Dr Louis called last night and we had a long talk with him about the treatment plan.  It's a different route to treatment, and something that Emily has never had and he thinks it may be beneficial to Emily to try. The downfall, the FDA only allows a new patient on this trial every 3 weeks and to start it every 6. So right now, we need to find out if she is HAMA positive and they will talk with Dr Gowda to make sure she didn't have any allergic reactions to the antibody treatment she did have. Currently there have only been 2 patients on this trial and others standing behind to get in.  He said possibly could be ready in April/May but not to hold his word on that. 

What does this trial require? Emilys platelets need to be 20 so I think she will be ok there and her ANC 500 and we have not seen a low ANC in awhile. Emily would go to Houston when they are ready for her and have a full work up of scans (MIBG, CT and whatever other scans and bone morrow biopsy). She would get the transfusion of the T cells after the results of scans and stay in clinic in Texas that day for most of the day. She will be released but has to stay in Texas 4-6 weeks after the transfusion. There are many side effects much like the antibody treatment, but some different and they know how to treat them. Pain is associated with this treatment, fevers, flu like symptoms, so it could call for inpatient stays at Texas children's.  We were not aware of the 4-6 weeks stay, so we know we will have to work that out how dad and I will take care of that and also work out where Emily will stay. Like dad and I feel she needs to be comfortable being away from home and school, so the camper would be the most likely thing so she can also have her dog.  Obviously once we can accept the trial and know more, we will let you know all, because we are sure some help may be needed either at home or with travel wise.  Right now this is all we know, but feel this is a good really thing for Emily to move forward with so we are working to get this started to we can have dates and know more.  After the 6 weeks, Emily will need to have a work up of scans again like she did before and see how effective the treatment was.

We did ask the doctor last night what he thought we should do in the interim while waiting for this trial. He agreed that high dose chemo hasn't really worked for Emily in the past and that only would need that if she had aggressive progression. (But he did state this was his opinion, but that he could also talk with dr Gowda about it) Progression is obviously what we hope doesn't happen or if this trial doesn't work either. We told him that DR Gowda offered us metronomics trial (which has low dose chemo pills, and some other pills that she would take) to keep her stable and give her bone marrow a break. Dr. Heczey thought that may be a good regimen to do while waiting for the trial in Texas.  However we will see since we have scans in a few weeks ( once again no dates have been told to us yet) and we are also asking for a PET scan while we are in Michigan as well, not sure if Bone Marrow will need to be done yet either, but.

At least we have a plan and we are working toward that plan. We will continue to keep you all updated, this all was talked about last night, and it was nice to talk with the doctor in Texas and he was great, answering all of our questions, talked with me and also talked with Doug. 

Many continue to ask what are some ways to help (while we hate to ask), these are still available:

--http://www.gofundme.com/emilysjourney

--making a donation though paypal on Emilys site

--mailing a donation to Dominion Credit Union in Emily Hubbel's name (we just ask that you let us know that you are doing so)

--mailing a donation to Emilys PO Box

By the way we have over 3000 boxes of band aids. And without your help this would have never happened!!! You guys are amazing. We will have a total tally soon of the number of boxes and pictures soon but this was an awesome project and we have another project coming up that we would like your help with, but just need to work something's out. This one will be a little bit easier for many others too help with.

We continue to thank you all for your love, thoughts, prayers and help as we continue to move on with this journey.  We never would be where we are today without all of your love, thoughts and prayers so we thank you so much. 

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

Merry Christmas and Happy New Year with Update

Merry Christmas from The Hubbel  Family!

A couple days before Christmas, the ASK Childhood Cancer Foundation Holiday party was going on. Sue was here, so we went and Emily and Brianna had a great time, Jessie was at her dads that day, so she wasn't able to go. But we had a good time and it was nice because Emily was more involved this year compared to last years ASK Holiday party.

Emily started Day 1 Avastin the day after Christmas. She did really well with that,but it was a super long day at the clinic and Emilys platelets were at 29 , so she also required a transfusion. We were also told that her HMA/VMA were starting to creep up, so we really need to make decisions on what is next. Dr Sholler has emailed Chrystal Luois in Texas, so we are waiting to hear from her in what our next steps are and Dad and I are looking at trials in New York, St Jude and pretty much anything out there.

Happy New Year!!!

Our goal for the new year is still to bring Emily to NED. We know that we can't stop treatment and neither of her doctors here or in Michigan recommend stopping treatment. It's really just determining what we think is best next. Her doctor here thinks high dose chemo and her doctor in Michigan recommends DFMO, but she has been wanting us to do that each time. The other issue with starting a new treatment plan, is Emilys platelets... They have not been over 50 in a very long time, I honestly couldn't tell you the last time.

Emily had clinic yesterday just to check counts and platelets were at 29 again. She actually required a transfusion, but because they were closing early, have asked that she come back Friday for counts again to see if she is maintaining. She has two more days of chemo. It Is going well, but she isn't eating much.  She has lost a little bit of weight again, but we are at least 10 lbs up from where we were last year at this time. Day 15 avastin is next Thursday and we are still waiting to hear from Michigan on scan dates. At this point we are figuring out next plan...

Emily had a nice Christmas and stayed up late last night to watch the ball drop. 

Happy New Year!

#neuroblastomasucks #emilysjourney

www.gofundme.com/emilysjourney

Available to make donations via Emilys page

Mailing do donation to Dominion Credit Union to Emily Hubbels Account

Thank you again for your continue thoughts, prayers, love and donations, they mean more than you can imagine. Thank you for the Christmas cards, and those who sent gifts and love. Every bit helps so much, the prayers and love mean so much and for continuing to be part of her 3 year journey 

Day 15 Avastin of Round 11

In the clinic today, and Emily isn't quite herself today. Her temp was 99.9 (ack) and she just seems exhausted!  She was sent home from school yesterday morning after only being there for about 20 minutes because she said her eye hurt and the clinic was worried she had pink eye.  Thankfully her eye didn't bother her all day, so she must have gotten something inher eye but she has picked up something along the way Her WBC is pretty high too which suggests she is trying to fight something. Still waiting for the doctor to see if she may possibly need an antibiotic after her IV avastin finishes. Today is day 15, so her avastin just started about 10 minutes ago. Thankfully her platelets at at 35, so while they are still low, she doesn't require a transfusion. She is sleeping now from the Benadryl. 

Did hear from Dr Sholler about the trial in Texas, so next week we will provide a tube of blood to send to Texas, but we have to go over the consent with Dr Crystal Louis over the phone first.  We just want to have this ready in case we decide on that being the next move. Dr Sholler said Emilys ANC has to be Over 1000 if possible ands that it will take a few months for Chrystals tam to grow and bind to antibody. QWe are also thinking about NYC possibly 3F8, but we are still trying to make the best sound decision. The other thought would be a higher dose of chemo where she would lose her hair, but we just haven't made the best sound decision yet.

At this point we just want to make it through the holidays so she can at least hope to feel her best and then decide what is the absolutely best. This round 11 has been hard on her with eating, she hasn't been eating as much and she is still very picky about what to eat and the foods she likes changes often, but hopefully that will pick back up.

Thank you to everyone on the Text to Donate day, hopefully it was very successful. Also the gofundme is still open for anyone that wants to help and I promise it means very much to us, www.gofundme.com/emilysjourney... You can also still make a donation on Emilys webpage or send gas/grocery gift cards to help. We continue to think everyone as we continue on with this journey.

I found a picture of our family dated 12/5/2010 this was just 18 days before she was diagnosed and 13 days before she went into the hospital because we didn't know what was going on, 

Exhaustion / Long Day

We got into Michigan around 9 last night and was thankful to be in a room at the Renucci House with a kitchen. Had a late dinner with Emily working on homework and then off to bed. Brianna and daddy aren't feeling well and I am with a sore throat but not other symptoms. (Thankfully!)

   

After a late night, Emily had a long day in clinic. She was accessed and thankfully on the first time. By time labs were back, it was already past time of going to get MIBG injection, so they were coming to the infusion room. Emilys hemoglobin took a huge drop from 10.9 on Thursday of last week to 8.8 today. WOW! Platelets were 29, so she needed platelets.  Just an extremely long day. Today for the first time Emily played with the childlife here in Michigan and she had a good time, but as many times as we have been here Emily has ever played with her. So that was nice. After a long day, we ar back in the Renucci House and Emily had a snack and she is already asleep. 

Tomorrow we have another long day. They want to check he counts again and MIBG scan is tomorrow and then we meet with Dr Sholler.  Please wear your Emily gear, saying a thought, love, prayers for stable or even better, 

Anxiety is awful here and dad and I have lots of anxiety.  Ready for this to be over. 

Make sure you hug and kiss your kids and tell them how much you love them.

  

Oh, we also had a very wonderful person start a gofundme.com for Emily. If you would like to help out that would be awesome and very helpful. Here is the link: http://www.gofundme.com/emilysjourney

How is Emily?

It is the million dollar question that gets asked often and normally the first question we are asked.

Overall Emily is doing well. Round 10 was actually delayed by a week because her platelets were not recovering. They were at 19 and held the round off and gave her platelets. When she went the next week to start they were 23. Dr Gowda actually likes them at 30, but allowed her to start with platelets on board. Day 4-9 was her chemo, and she already started the not feeling hungry and very tired before the chemo started. So, once the chemo started it was even worse.  Dad tries to go everyday that he can to have lunch with her at school to make sure she eats.  This past week she was scheduled to go Friday to have her counts checked, but we noticed Wednesday night that she was bruising pretty bad and Thursday morning she had petechia on her arm. When counts came back, everything actually dropped. Her ANC although not completely low, but it was the lowest it has been in a while, so we are just keeping watch to make sure she doesn't get sick. Platelets were down to 13 which is the lowest that they have been in a long time. So, they gave her 3 units of platelets and want her back tomorrow to check counts and most likely getting platelets. So all weekend including Halloween night we have been very careful to make sure she doesn't hurt herself. She didn't make it long Halloween night though because she was so tired from a long day at clinic and the chemo she is on.  Thursday will be day 15 of avastin and complete this round. 

We just learned Friday that Emily will be heading to Michigan the week of November 11th for scans on Wednesday and Thursday. It makes it really hard to make any set plans when you don't hear in a real timely fashion that you have scans, but it's been what we have been used to for the last almost 3 years.  Scanxiety has already started, especially saying Dr Gowda feels that after 10 rounds of what Emily is currently on if there is no change, that this is really no longer working to "hopefully" clear her and only keeping her stable.  So we really aren't to sure what will be next for Emily.  I know that Dr Sholler has been pushing DFMO, but compassionate trial of DFMO (if she has disease she would not be eligible for the DFMO trial) would only keep Emily stable, and our hope is to get her clear. The fear of keeping disease always means there could be progression like she had last year. 

So, how is Emily? Emily is doing well and hanging in there.  Every day Emily fights and she is so strong, and continues with a smile on her face.  She just finished her first 9 weeks of 1st grade in school, and she is doing well with school. She has been having a lot of headaches lately, but we are thinking that is from the avastin. She still isn't able to be part of gym with her low platelets, so we have had to keep her out of gym.

Please continue to send your love and thoughts to Emily as she continues to fight this horrible disease.  As to be expected, Dad and I have good and bad days with still dealing with this disease and hearing all the horrible things that continue to happen around us. Some days are really good and other days, you just feel awful.  We will always live in fear, fear of this disease, what it is doing in her body and what is happening.  

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

  

                                    

Quick Update

We received an email from Dr. Sholler today letting us know that the bone marrow and MDS are both completely negative. This is good news, because if the marrow were positive for MDS we would have to stop the current regiment that Emily is on. Thankfully that is not the case, and her marrow looks good.  Doug and I meet with Dr Gowda on Friday for clinic and to go over the options that we were given. Again we will most likely go with two more rounds of the avastin/irenotecan/temodar that she has been on. She has been handling that very well, with minimal sickness, and even gaining weight, 

 

 

Emily was so excited, she was able to ride the school bus yesterday for the first time with her BFF.  It's a big deal for dad and I to let her ride the bus and even harder for dad. Dad drives Emily to school every day and walks her to her class, so this is hard on him. But it is also hard on us because of germs and worrying about the other kids, but we also know we can't protect her from everything. However Emily is doing great and loves it.  We do know that there seems to be lots of sicknesses going around, so that is another concern for us, worrying about her getting sick since her immune system is compromised, which could mean hospital inpatient sickness or even fatal. We are constantly on her about keeping her hands washed and hand sanitizing her hands often during the day. If flu season is as bad as it was last year, Emily will be staying home and we will have the home bound teacher come again. 

Just a quick update. Remember to kiss your kids and tell them how much you love them.