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

Fevers

Today marks 4 days that Emily has had fevers off and on during the day and night. The only symptom she has is a fever. Everything she was tested for earlier this week has come back negative so we have been giving Tylenol at home. We also haven't given her blood pressure medicines too her the past 4 days because her blood pressure has been a little on the lower side with high heart rates! 

Dad took Emily to clinic this morning and upon arriving she has a fever of 101.3 with high heart rate. I came in mid day so that dad could go home to sleep since he has to work tonight. They did blood cultures again and are checking to see if she has the flu. We should hear from the doctor on call sometime tonight if the flu test is positive! If it is they will call in tamiflu. If it is not, if she has another fever we have to call the on call and let them know. Obviously we worry about fevers for four days because it reminds us of when she was diagnosed bc she had unexplained fevers! 

Her red blood is slowly dropping currently at 8. So we have to watch her to see if she is tired to take her in for blood. Her platelets did drop from 63 Wednesday to 32 today, so she needed a transfusion so she would make it through the weekend. We figured she would need them since fevers eat up platelets!

Right now she doesn't have to return until Wednesday unless another fever or needs a blood transfusion! Wednesday she will be admitted Into the bone marrow transplant floor and prepped for her stem cell boost.  The plan is just to be there all day unless something happens. She will then have to return Thursday morning depending on what her counts are Wednesday. 

It's been really busy at the hospital lately and we really need a break. Heck it would be nice to have a vacation away from it all. But.  

The neulasta (14 days today) worked very well for her WBC and ANC because that is up. It's possible to stay in her system for another week and we could possibly see a drop off but we know it's still around right now. Since her ANC is up they are not keeping her inpatient unless sometime else happens! Since today was 14 days on DFMO, VCU was sending over her information from today to Helen DeVos for day 15! According to the trial she will need a day 28 labs as well. 

Please continue to keep Emily in your thoughts. We are hopeful it's not the flu but at the same time we don't know what else is causing the fevers!

Thank you for continuing to follow Emily and her journey! 

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. 

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 

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

Quick Update // Wear "Emily Gear" Tomorrow

Today Emily had clinic and MIBG Injection.  Clinic included getting accessed and checking counts.  Getting accessed today was one of those that really made me want to cry.  Julie didn't get to access Emily today and I really wish she did, because she never has any problems, but the girl who accessed her today, didn't the needle in straight and couldn't get blood drawn. She messed with it several times while Emily was sitting on my lap, screaming and crying she wanted to go home and saying it hurt and asking her to stop.  I said we never have this problem, it must not be in correctly.  She stopped and called another nurse in, who looked and felt around and by this time, Emily's anxiety was up and she was over it.  She lady ended up having to pull it out and poke her again, and this time she got it.  Emily was glad it was over, and I was wishing Julie was there to access her so Emily didn't have to scream and cry over getting her port accessed because she hasn't done that in a good long time. Since siblings can't come in, Dad was out in the waiting room with Brianna and later when I told him about it, he said you need to learn how to access her so that if that happens, you can do it.  I do need to learn how to do it, plus it would also help at home if ever needed to for whatever reason. 

All of Emily's counts look good, except her platelets did drop, they dropped from 43 to 32.  She did look like she was getting petechia, but I think the reason it looked like that is because of how much they messed with her port area and with her platelets being low.  MIBG injection was no problem except for radiology was running behind because they had an emergency scan study.  We always hate to hear that, because we normally know what those mean. 

We finally got to meet Molly Adair and her mom, and it was really nice to finally meet.  We have been talking to one another for the past two years and after two years we finally got to meet.  I also got to meet Jason Greer, Tristan's dad.  He knew we were here because he saw the HOPE Magnets on our van.  (Thank you Sue and Jo for making those for us)  I didn't have the pleasure of meeting Tristan, but I did get to meet his dad.  It is always nice to meet other families that you follow along with their journey and actually get to put a face with the name. I know there are a few other families here, but we didn't meet them. 

Tomorrow is scan day, Emily has scans first thing in the morning at 830AM and then we meet with Dr Sholler at 1230PM.  Dad and I were talking about it earlier, we are pretty nervous about the day and what the results will bring, but we have HOPE. We don't know what treatment will look like moving forward or anything like that at this point, but we are just taking it one day at a time.   So make sure you wear your Team "Emily Gear" and share it with us.  You can send it to email at Shannon@emilyhubbel.com or share it on facebook.  

Remember to always hug and kiss your kids and tell them how much you love them.  We will update tomorrow.

Chemo Delayed Again

Emily was so thankful to have her BFF, Lilly, camping with her this past weekend. The two together are so good together and they had a lot of fun. However, Emily had nose bleeds (that we were able to control) all weekend, and bruising on her legs, so we knew come Monday that she wouldn't make counts.

Come Monday, took Emily to the clinic and she started to get petechia on her chest, so I knew her platelets were low...after waiting a while counts came back and her platelets were 14... 14 meaning can't start round 3 with Day 1 of Avastin and on day 4 chemo. 14 meaning she needed a transfusion. After a long day in the clinic, Emily received platelets after the premeds and we headed home. We were scheduled to come Thursday for counts and to meet with Dr Gowda for plans.

Clinic was quick today, which was great... Emily had her counts checked and while we waited, we met with Dr Gowda. Platelets are becoming an issue because it will become linger and longer between each round that we may wait longer to have her platelets recover on their own. We knew that the Avastin could do this, however with the last round, we are finally seeing some improvement and with that we want to move forward. But platelets may not allow us to move forward, because they need to be at least 35 to start. Dr Gowda went over a trial for resistant neuroblastoma for patients whose platelets aren't recovering and are needing their stem cells. We are not sure that we are interested in this at this time just to receive her stem cells, but we will look it over and also send it to Dr Sholler and get her take on it. This trial consists of 5 different Chemos and "It was designed to maximize cytoreduction via high dosing of synergistically interacting agents, while minimizing morbidity in patients with resistant neuroblastoma (NB) and ineligible for clinical trials due to myelosuppression from previous therapy." While at this point we don't want to give Emily 5 different Chemos, but we also at weighing options to make sure that Emily can continue with this trial.

Today's platelets were 42, which we know most of those platelets are from the transfusion, so we don't know how much they are recovering on their own. Dr Gowda gave us the opportunity to start the next round if we wanted too, but that he recommended we waited until Monday. As long as Monday they are 30 and above, he will allow her to start the next round, knowing that this next round is going to drop them even more. So, Monday I will take Emily back into clinic and hope that her platelets have maintained to recovery on their own. If they are 30 and above, she will get day 1 of Avastin running over the hour and half along with premeds before hand, and the. Day 4 starting the two oral Chemos at home. We did make the decision today that after the chemo that we would not like Emily to get the GCSF (Neupagen shot) that she received the last two rounds because there has been a study down that the growth hormones in the shot may cause progression.

The fear is allowing to much time in between each round and allowing neuroblastoma to take over. Neuroblastoma is once again making dad and I make decisions that are hard to make, and we know that we need to figure out something to help her platelets. We are still figuring out when we will be back in Michigan for scans to see how things are looking, but at this point we still need to get this next round started.

Please send your love and thoughts that the 3rd round will start Monday. Make sure you hug and kiss your kids and tell them how much you love them.

Scans Complete with Update

Emily waiting in the clinic today

We have had a busy two weeks, so sorry for the lack of updates.  I try to keep facebook updated as much as possible.  Last weekend, a fundraiser was put on for our family for travel, medical expenses and Emily's chemo by Steve from Wholesale Guitars and it was an amazing night. Emily originally didn't want to go and the only way we could get her out the door is to let her wear her night clothes. (she lives in them).  Once we got there, she didn't want to leave, her best friend, Lilly, from school was there and they have such a bond and a true friendship that is so great to see at such a young age.  Everyone had so much fun, Jessie and Brianna did and it was such a great night. Steve thank you for all of your hard work for the fundraiser, it was an amazing night.  Thank you to Amy for getting the shirts made and tank you to all of the bands and especially to Hali Hicks and her husband Trey Cordle.  Emily didn't want to leave until she saw them play! Thank you for everyone's hard work and a wonderful night and thank you to the friends and family and people that we didn't know who come to support Emily and our family!  THANK YOU!!!!

We are on the road traveling en route back to Virginia, so if I have spelling anything incorrectly, I apologize in advance.  Probably won't be home until tomorrow sometime, but we are en route.  Its a long drive, but even longer for the kids with long periods in the van.

We left Sunday afternoon heading toward Michigan and arrived late Monday night. Emily had clinic Tuesday morning with counts and injection.  All of her counts remain ok, with platelets at 29.  They wanted her to have her counts checked again on Wednesday before scans just to see if she was maintaining her own platelets.  Anxiety for this scan has been pretty intense, mainly just because we changed up the treatment from the DFMO to the chemo on our own from research. Emily's counts still remained ok, but her platelets dropped to 19, so she needed platelets.  She ended up having a weird reaction to the platelets of coughing like crazy, but once they stopped them and the coughing subsided, they started them back up again, just slower. This definitely helped just took so much longer, so we had a long day in the clinic. Long days have been a normally lately, but the positive from that is that we aren't spending as much time in the hospital.and mainly only one day a week.

Today we met with Dr. Sholler about the results.  We waited and watched many nurses and doctors walk by our room, and each time we heard footsteps, anxiety was building. We feared the wait meant the worse, we feared the room we were in, meant the worse, we feared it all. Finally after waiting about an hour, Dr. Sholler came in and said "Things look better!" Sign of relief and thankfully she didn't make us wait to go over things..  She showed us the scans and things definitely look better. She has two spots that have mild uptake, we originally thought it was one, but after review, it was two, and two spots on her spine are resolved and all of her other spots are mildly decreasing. This is great news, 

Thank you to everyone who for the past two days and days before have shown their support by sporting the Emily gear and leaving their love and support on Emily's page.  It means so much, and it helped. The last two rounds of chemo and Avastin have helped along with the homeopathic things that we are doing at home and only organic. 

Dr Sholler recommended with the positive results of the scans, to do two more rounds of the same chemo and Avastin, except that instead of doing 21 day cycle for the round, make it 28 days.  Both Dr. Gowda and Dr. Sholler are both agreeing with this because of her platelets and hopefully this will give them more time to recover. We too are ok with this and will start looking into some other homeopathic stuff to add into the mix here. After the 2 rounds we will go back for scans and see how things look.  The 28 day cycle should also give some more free time in the mix as well, so we are definitely ok with proceeding.  The hope is still for CR (Complete Remission) and putting her back on the DFMO to either keep her in Complete Remission or at least stable (partial remission).  

Thank you for continued love and support and sending all of your thoughts, because they means so much and we are so hopeful to still get Emily into remission and this nasty disease gone and out of her. She is ready for treatment to be done, but she is handling this so well and we are so proud of her.

Alright the kids are calling in the backseat, so that is my que. Remember to hug and kiss your kids and tell them you love them everyday!  

Emily's Journey Bracelets For Sale

If you are interested in getting one of Emily's Journeys Bracelets, you can click the link below to get one.

Emily Hubbel's Bracelets

http://www.ebay.com/soc/itm/121052148553

Please let us know if you have any problems!

Thanks!

What Makes You Beautiful

http://m.youtube.com/#/watch?v=78bjyND5hcE

Thankful

We are thankful to have this day and weekend to spend In Massachusetts with family!

Happy thanksgiving family all over all, friends and supporters!

Birthday Pictures

Happy 5th Birthday to Emily.  On May 20th, Mommy and Daddy were so happy to be able to celebrate her birthday and have a big party with all of her friends and family!  We also want to thank Sue and Jojo for coming out from PA to visit and be a big part of our weekend. Emily was so happy and was feeling so good and had a great day. Mommy and Daddy ran around all day long getting together everything to make sure that Emily had the best day!

We want to give a huge thanks to Fairy Godmother Project (The Richmond Chapter) who was so amazing and worked it out to have The Fun Bus donated, a bouncy house donated and the wonderful cake the Richmond Coordinator made for Emily. Daddy wanted Emily have a big birthday party this year, and she definitely had a big party, and it was just so wonderful! We can't thank you all enough for the amazing day and the friends and family that came to be with Emily on her special day.

Here are some pictures that we wanted to share with you from her special day!

Happy 5th Birthday Sweet Girl

Emily and Karen (owner of FunBus -- Thank you Karen)

Emily playing on funbus

The beautiful cake

Emily and her friends playing in the Bouncy House

Emily and her sisters

Again thank you so much to all those who made this day possible.  So many of you have sent birthday cards and packages to Emily to make her birthday the best one she has ever had. The love you all have showered on our Emily is amazing and we really can't thank you all enough. Please know your cards have brought smiles to Emily's face during this past week when she has felt down, and it means to much that you all could do this.  Daddy was hoping that we could reach Justin Bieber to see if he would send Emily a little video talking to Emily and to say Happy Birthday... We did try for a few days to see if we could email him and contacted a few others, but no such luck on reaching him and making it possible.

Thank you guys again so much for such a wonderful 5th Birthday!

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!

Day 4 New Trial

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Here we are Day 4 is just about done and ,we are going into Day 5. Last night Emily complained of her feet hurting because they were tingling, which one of the side effects are neuropathy and she also had a really hard time going to sleep.  She cried because she was tired but could not go to sleep.  I held her tightly and she ended up dozing off to sleep around 130 AM. 

Today was a long day in the clinic with counts and blood draws that are required for the clinical trial that Emily is on and day 4 of the chemo. She is doing well with the chemo, better than we thought she would and for that we are happy.  

Her counts are dropping quickly especially WBC and platelets.   Her hemoglobin was also a bit low, so it looks like she may need a transfusion next week, so we will see how things go. We have noticed that Emily stares off into space and seems to have a bit of confusion, but again is taking this really well.  She is not hungry in the morning for breakfast like she normally is, but has been eating very well for lunch dinner and later dinner.   

I will say that Emily does like the clinic here at Levine's, they have rooms for you in the transfusion rooms that are yours to go into and have time to yourself or a table in the middle where the kids can get together and play and you can still see the kids from the room.  Emily has really enjoyed the room and playing with the other kids who have come into the clinic.  Today Emily met another little boy who is fighting leukemia and played with him and had a good time such a sweet boy. 

Tomorrow is Day 5, last day of Round 1 of this trial's chemo and she will be deaccessed and be free for the weekend.  We are hoping she will be feeling well, but we have been taking this one day at a time and honestly minute to minute at a time because it changes so quickly. Monday she will go back for Day 8 and have a head to toe physical with Dr. Kaplan and check her counts to see where she is before heading home back to VA and get the neulasta shot (she is going to absolutely hate this).  We are hopeful for no transfusions, but we will see what happens.

This is a quick update that I wanted to do after working for a while tonight and I am not posting a picture today, but I wanted to update you all on how Emily is doing.  Its been a long and exhausting week and Doug and I are ready for a date night to have some time alone.  

Make sure you hug and kiss your kids and tell them how much you love them.  Sending love to you Jessie, we miss you!

Day 1 New Trial

We got into the campground late last night and ended up getting to bed late so everyone was exhausted and didn't want to get up this morning!! Plus I heard the alarm go off and turned it off and fell asleep until a little late! Oops!

A new area and a new hospital to adjust to! Its nice here and so far everyone has been very nice and we really liked Dr Kaplan! But its been a long day here at Levines today!

We met with Dr Kaplan while the girls played and went over preliminary about Emily and then talked about the trial and any questions we had! Emily had to be accessed again today and she screamed and cried and then once it was in she was fine! She seems to be having a harder time with this access with it staying in saying it hurts to raise her arm and is holding it, but eveything looks ok! This has to stay in until Friday so I am hoping that she handles it well! And there are no problems!

Overall her counts look great and everything looks good, so we just wait while fluids are going now which need to go for an hour! She did take her nifurtimox well with no problem by crushing it and putting in apple juice and then taking by syringe (go dad, great idea!!)! She will have to take these 3 times a day (today only twice)! Once the fluids are done the chemo will start!

Doug and I have been dragging feet about the chemo starting again, it's still hard to swallow that we have to do this and that she still has spots that don't want to go away! Please put all your thoughts into this chemo and pill doing it's job, because I know we are!

So by 605pm Emily will have blood drawn for the trial and hopefully we will be out of here by 630! A long day and a long week ahead!

I will continue to keep you all updated on how Emily is doing!

We are in Grand Rapids, Michigan

Long overdue journal entry...here it comes...I know when I start receiving emails, text messages and facebook messages asking how Emily is doing that it has been a while since I updated, and I apologize.

Since we got home from Philly, Emily has done well, The port finally started to feel better and where they took the broviac out wasn't feeling as sore. When we got home we started working Helen DeVos to get an appointment set up. We didn't want Emily not being on treatment for too long so we wanted things to move quickly. Thankfully, Dr. Sholler was able to get us in March 7th for CT scan fused with MIBG on March 8th. They also wanted to do a bone marrow biopsy but because Emily had already had one at CHOP on the 23rd and no treatment after that, they were able to use those results, which were negative. Thursday Emily will have her MIBG scan and then afterwards we will meet with Dr Sholler to talk about the scan and talk about the trials that they have to offer.

Thursday Emily had a clinic visit at home and we were able to talk with Dr. Gowda for a little while. This was also Emily's first time having her port accessed. They used Emla cream and overall she did fine with the port being accessed, I think it was just the fear and anxiety of it all. I have to be honest it is so weird not having to flush her lines daily which I have done for the last 14 months and doing weekly dressing changes, which I have also done for the last 14 months. Dr.Gowda also didn't understand why CHOP didn't have any other trials that Emily would qualify for and didn't understand why Emily didn't qualify for the HU 14.18 Antibodies. Antibodies/Immunotherapy is supposed give children an additional 30% EFS (Event Free Survival Rate) and this is what we want for Emily. Dr. Gowda looked over the trial and couldn't see why she didn't qualify for it, so he was going to check with CHOP and see what he could find out. He did print out stats on the temolozide and irenotecan chemo that they wanted to put Emily on and really the numbers were not all that great, however if it works, then it works. Dr. Gowda indicated to us that he worried about putting Emily on any type of Phase 1 trials right now when she has a great quality of life and no problems with anything except for a tad bit high on her thyroid levels and we agreed with him. He also indicated to us that after we visited with Dr. Sholler that we really needed to make a decision on what to put Emily on because he didn't want her off treatment too long and she progress. This too we agreed with. So, although we are making the trip to MI, it doesn't mean that we will go with any of the treatment that they have, but we wanted to have options if they are better for Emily than just the chemo.

We were able to schedule a flight through Wings of Mercy and everyone through the organization were/is amazing. We wanted to leave Tuesday, March 6th before we needed to be here, but the closest that she had was Sunday March 4th, so we worked with what they had. So, we had to make sure Brianna could stay with my parents and Jessie went to her dads a day early. We were told that Helen DeVos does not allow siblings into their clinic because of risk of infections, which we think this is great most clinics should do this.

Emily on the plane

Thanks Mom and Brian for taking Brianna and taking the van from the airport. Wings of Mercy is an amazing organization and the pilots were great. Very friendly. This was Emily and mine first time on a small plane, and we both did fine, no problems. I was a little worried about my anxiety with the flight, however overall it wasn't bad, there was moments and mostly I was trying not to be too nervous and let Emily see that. It took about 3 hours to get to MI, however if we were to drive it is about 775 so approx 13 hours away. We got into the FBO airport and someone took us over to the main terminal to pick up our rental car and then head to the Ronald McDonald House. This would be our first time staying at a Ronald McDonald House and they were able to confirm that we should have a room with no problem (nothing like Philly) but we also had a room at the Renucci House if there wasn't anything at the RMH.

The plane that we flew on to head to MI

Emily enjoying time with Sue and JoJo in the pool!

Emily's bestest friend Sue and JoJo made the trip (6 hour trip) to come visit Emily and Doug and I and they got a hotel and made sure the hotel had a pool. Emily was so excited to be able to come to Michigan and meet up with Sue, she has missed her and then get to get in the pool. Thank you Sue and JoJo, Emily absolutely enjoyed the day and being in the water.

We did get a call today from Helen DeVos that they had scheduled Emily for an EKG on Wednesday as well, because if we decided to go with one of their trials that some of the trials would require an EKG, so we were ok with that. We are anxious to hear what they have a available here, and everyone from facebook when we noted about being in MI has been so friendly and kind. Thank you all so much for your kindness and welcoming us to MI. I think at this point we are not nervous about anything, we are just anxious to get things into the next mode and know what we are doing.

Overall, Emily is doing great. Her hair is coming in quickly and she is so excited about that. She said she can't wait until I can put pigtails in her hair. She is enjoying going to school once a week for 3 hours (next week they will offer it twice a week) and she is so happy to be around other kids. Emily is so excited to learn and be around other kids. She is starting to gain weight and she is almost at her weight of 30 pounds where she was when she begin this whole journey 14 months ago, so it is so nice to start to see meat on her bone and not see just the bones. She is thriving and we are really happy about that, and so ready to be past this journey.

Thank you to everyone who has been so helpful and continues to be. The meals that have been coming from Fairy Godmother Project, have been amazing and ever so helpful. The very friendly people and the fundraisers that have been started in my mom's area and even by some local friends are so wonderful. We are very thankful to everyone who has been so kind. The gift cards continue to be of so much help and we are so thankful to all of the wonderful people who are just so wonderful to our family and send some and continue to do so. We can not tell you how much help they are! My cousin Mandy sent me a message and said someone wanted to send Emily a special present that she will pick up when we get home and we can't wait to see the special present for her. We will be sure to take a picture and share. Thank you Tricia and Lynn for making the Team Emily bags and when we get home we can start making some bags and we will be able to take them up to the hospital. We are still collecting coupons to make bags for families and will continue to do so until we can get a huge stash of items, but we are so excited to be giving back to newly diagnosed families. Thank you Sue and JoJo for always sending huge amounts of coupons and for bringing a huge stash of things for the bags. Giving back is excited and makes us feel good for all the amazing things that people do for us. I am sorry if you have emailed or sent messages and I have responded, life has been busy, but I will try to get back to you all soon. Thank you again for all you have done and continue to do, it means so much and we constantly appreciate all that you do.

Well, I am going to call it a night. We are getting up early to meet with Sue and JoJo for breakfast before they head back home. Remember to love and kiss your kids every night and tell them how much you love them. Love you Jessie and Brianna! Good Night.

MIBG Results 2-22-12

I know everyone is looking for an update on how Emily's scans turned out...we were both very nervous about the results and especially with Emily complaining of pain in her right hip! The results came back with written terms: " whole body images demonstrate multiple foci of increased tracer uptake in the following areas: the right side of the skull, the lumbar spine, pelvic bones bilaterally, proximal and mid shaft of the femurs bilaterally. Compared to the prior study of 1/10/2012 , the intensity of some lesions has decreased." This means that Emily's scans are stable and some of the lesions are not as bright. Dr Mosse seemed surprised by the results but happy.

This means Emily is not progressing and is not regressing but the intensity of some are lighter. While there is nothing to celebrate as of yet, we are ok with the results and just happy to have Emily here with us and enjoying life.

So, what's next...we still have a long road ahead of us...we don't have an end in sight (I asked) and what is next is low dose chemo. Low dose chemo until something else comes open. Currently Emily does not qualify for any trials, mainly because she is not progressing and because they don't have any clinical trials that are open. So we are on a bridge right now... Low dose chemo it is... Emily will start on a antibiotic tomorrow that is to help with the major side effect which is diarrhea and then come Monday she will start to different chemos at home. Irinotecan and temozolomide. Emily will do two rounds of this which is 21 days per cycle. So the first 5 days will be an oral liquid which is the irinotecan (but we are awaiting approval from the insurance on this one since they normally do it by IV ...if not approved then Emily will have to go to the hospital for two weeks everyday Monday thru Friday to receive the irinotecan) and the temozolomide which is in pill form. After the 5 days she will have 2 weeks of of no chemo and then start the second round. After the second round we will go back which is approximately 45 days for scans to see if the chemo is working and re-evaluate.

We are still nervous about what if this does not work... Dr Mosse said this works for some and they are on it for years but then others it does not work. We asked about hair loss and she said no but on the side effects it says the most common effects are decrease in number if red and white blood cells and platelets made in bone marrow, diarrhea and hair loss. So we are going to question that. Emily will only have to go once a week at our home hospital for count checks.

Tomorrow is surgery day...removal of broviac line and insertion of port. This will work out well with the chemo that Emily is being put on that it will not need to be accessed as much. So ready for emily to be able to enjoy the pool, taking a bath and just normal things and not be left out of the summer activities...this is why our hope would be to sometime take the girls to the great wolf lodge in Williamsburg!!! She will also have her bone marrows checked for disease while she is under tomorrow. She will not be inpatient but we have to be around for any problems and also to get the chemo to take home with us. They want the chemo to start Monday.

Doug and I are still talking about getting a second opinion, if you will, from Sholler in michigan on this and if we are going in the right direction. Doug and I want to do what is right for emily and rid her of this horrible disease and move forward. We also asked Mosse about Sloan but she didnt feel it was a good option for Emily right now.

So we charge in...we move forward... Ok with the results but our goal is still to be Ned... The thought of having to keep Emily on a chemo for long term just to not progress is not something we want...no end in sight, but we move forward and just happy she is happy and not in any pain....

Will update after surgery tomorrow on how she is doing.

1 Week before Philly

Thank you so much Amazing Hats and Sue for the beautiful hat

Its Monday evening, and I just wanted to update...first Facebook updates:

February 12: Tomorrow Emily has clinic. We are thinking that her hemoglobin is low because she has had a lot more downs than ups the past two days. Just very low energy and tired and clingy to mommy!

We also have 1 week from today before we head to Philly and we prepare for a week of scans, with surgery to remove hickman line and replace it with the port and also a bone marrow biopsy.

February 13 @ 1230PM: Emily is still here at the clinic saying she is tired! It will be a long day here because Emily needs a blood transfusion! Platelets went to 59, small increase but better than decrease! ANC is still a little low but ok! Have a good day!

February 13 @ 8PM: Emily received her "super blood" (blood transfusion) and has much more energy! It was a long day at the clinic. Emily has been complaining of pain here and there, but we are hoping it is nothing!


Over the weekend, Emily had a lot of ups and downs and she was pale a lot over the weekend. We could really tell Saturday night, that she just wasn't normal, so we figured her hemoglobin must have been low. We thought we might be taking her to the ER to get a transfusion if it has gotten any worse.

Sunday afternoon Emily complained that her knee/leg hurt were she has tumor and of course Doug and I both worried. Tonight she has complained that her right hip hurts. Again both Doug and I worry, but scans are a week away from tomorrow. Our hopes of course is that it is nothing. But as a cancer parent each body pain is scary.

Yesterday I received an email from another family whose daughter has NB where they had received an email about a family whose son was diagnosed with Neuroblastoma here not far from us and if people wanted to send post cards (I am keeping this information confidential because I don't want to spread information about a family unless they would like their information out there). Doug and I were able to locate them and contacted them just to let them know that we too are a NB Family and we are here should they need anything at all, their son was at our home hospital. While I didn't hear back from them, both Doug and I thought a lot about them.

Emily had clinic this morning to have her counts checked and her thyroid levels. As we suspected, Emily did need hemoglobin, because it was low. Her platelets went up by 4 to 59, while it was a small increase it was still so much better than a decrease and ANC went up a little bit, but still low.

We knew the family was at the hospital, however we didn't know if they had left yet, Doug thought I should stop by and introduce myself and just let them know again that we are there should they need anything. I will be honest I tried to find any reason that I could to talk myself out of it, mostly because I was nervous...I was nervous knowing how overwhelmed that they would be with their son just being diagnosed of this fearful disease, being shy about meeting someone new, and then walking back on the 7th floor of the hospital where we have not been since June of 2011. Thanks to my husband, it was a nice gesture to introduce myself and afterwards I felt better letting a family know we are there to help when being introduced into a world of the unknown. The world of cancer is scary and there are so many unknowns. I walked onto the floor and the fear I was worried about, my nerves and everything that we had gone through on this floor overcame me, but I didn't turn around. My husband was right...while we didn't have anyone immediately to talk to about NB, eventually we did and even had texting friends that were there anytime of the day and they were amazing and very helpful, and I knew it would be helpful for them. I also knew if they didn't want to talk, that they would have asked us to leave the small gift and we would have been ok with that. The security people had not changed and they remembered me and said go ahead mom, and I had to let them know I don't have a child on the floor, I am here to visit another child, she was confused and of course I explained. Dad came out and I introduced myself nervous and the pain and fear was in dad's eyes, I could see it and the reality of what I was nervous about hit, everything that they were going through just hit me and were flashing in my head when Emily was diagnosed. Dad took me back to meet his wife, and happily I could see that they were getting ready to leave (for home after 11 days of being in a hospital hearing all the things that they never wanted to hear), but I did talk with mom for a little bit. Mom too, I could see the fear, the pain in her eyes for their son, all of everything that I remember Doug and I going through 14 months ago, which all of the sudden seemed like yesterday. Doug and I sat on that same floor for 12 days and heard those same words that they heard, it all flashed before me. For parents who never cried before, they cried before with fear and worry about their child and all of this flashed before me as I was walking back through that hallway. I was strong, because they were receptive to my coming, and I held myself together knowing that they needed me too. I saw the nurses, again most of them were the same, that were there before, nothing had changed except for other families (newly diagnosed or those I have never seen before) going through the same things that we had gone through and the fear and worry about their children. I was happy that Doug pushed me to do this, because at the end of the day, it was the right thing to do. Mom was receptive to my coming as I explained to her that I was really nervous and thought this might be too much for them, but she was glad that I was there and that she knew she would have lots of questions and asked a few while I was there. I saw their sweet little son and I just wanted to hold him as he was crying wanting his mommy (just because I remember our sweet Emily being this way), he was beautiful in all ways and all I wanted to do was say that I'm sorry and sorry doesn't even touch what they were/are and will be going through, or what we are going through or what any other cancer parent is going through. Mom and Dad I just want you to know that Doug and I there for you to help you in any way that we can, to answer any questions that you have, we are here 24/7, please don't ever hesitate.

After leaving the 7th floor and getting into my van, I broke down. I broke down because I was glad that I had stopped by to introduce myself and just to let them know we were there, but also because everything that flashed in front of me. Again in the long run it felt good to be available to a family going through the unknown and going home today after 11 days thinking when they went in they wouldn't be there long and everything was ok.

Please be aware that families go through this everyday and oncologists are telling parents their worst nightmares several times a day, are you aware??. Today was a day that I needed, needed to get out there (and be more open then hiding behind a computer when we want to "give back" and honestly I feel that Doug and I were able to "give back" today!

Emily received her blood transfusion, and was a totally different kid, she got super blood and she had so much energy. During clinic she also had her thyroid levels checked since the MIBG treatment can cause a lot of thyroid problems. I called to see if the results were in after Emily was already gone and Elaine called back to update she said one of the levels were a little bit higher than it should be and the other was normal. She was going to check with Dr. Gowda to see if there was anything that needed to be done or just to keep a watch on it. So this will be one more thing to add to the list of worries, but we won't worry too much. We will send an email to CHOP just to have them be aware and if they think we need to do anything different.

The pains that Emily has complained about here and there have us concerned, but we have to hold up hope that it is nothing and just those things that every child deals with or just something else so simple. We do leave Sunday to head to Philly! Scanxiety has surely started if not already been there with the pending scans coming up. CHOP doesn't have any plans for trials for Emily yet, we were told... "We will need to take things one step at a time in order to decide what is the next best step for Emily. Emily's next disease evaluation is a couple of weeks away and we will need to use all of the information we have at that time to make recommendations." (this was from a few weeks ago). So all we know is all the trials that we have read and what Sholler said that she could do for us, so we are waiting to see what CHOP can do for us and our sweet Emily. Platelets are no longer an issue, so we don't want to hit anymore roadblocks, we just want something that will help Emily! So the pending scans have us both a bit a nervous about what they will show and how we will move forward. February 24th, while we are in Philly, we will also be celebrating 5 years of marriage. Anything that we have to do for Emily we will do, ANYTHING, ANYWHERE!

Update: I am still working on getting together care packages (bags for newly diagnosed families containing things like deodorant, shampoo and conditioner, razors, lotion, toothbrushes and toothpaste, hand sanitizer among other things to help those newly diagnosed families in the hospital) and they are coming along nicely! The stash is growing and we are excited to be "giving back"! The coupons that people are sending from all over the place, are so helpful and continue to be of huge help, so please keep them coming! Like I said the stash is coming along and I think when we come back from Philly we will be able to start working on those bags to take up to VCU for the social workers to give to newly diagnosed families.

Update #2: We have people asking where to make donations since some fundraisers are getting in the motion and I just wanted to update everyone and let them know how they could make donations and where:
Emily has accounts in her names at:
--Dominion Credit Union
--Wells Fargo Bank
--First Citizen Bank
****Donations may be made at any of those locations by giving Emily Hubbel's name and they will make sure the rest is taken care of.
--Through the website at www.emilyhubbel.com
--Mailing to PO Box 5383, Midlothian, VA 23112 where gas cards can be sent as well (which is definitely very helpful with the traveling)

Make sure you hug and kiss your kids each night and tell them how much you love them! Good Night!

4 Weeks Post MIBG Therapy Round 2

Emily says "Happy early Valentines Day!"

So, I have made a lot of updates via Facebook, so I am going to copy those and paste them here and then update the rest of the information!

February 2nd: Today is day 10 after stem cell infusion and we are still waiting for her platelets to recover! Her ANC and WBC are starting to go up so we know platelets are last and longest to recover so hopefully they start to go up soon. She will be back in clinic to check!

February 5th: Emily has clinic in the morning!! Tomorrow will be 14 days since her stem cell infusion, please send lots of love and thoughts for her platelets to be up and she won't need a transfusion. Dr. Sholler was looking over all of Emily's paperwork this past weekend and we have a call with her tomorrow evening!

February 7th: Yesterday was the first time since we have been home from MIBG therapy that Emily did not need platelets! She was getting them twice a week and yesterday they were at 35! Anything under 20 they transfuse! This is great and we hope they continue to go up! We have clinic Thursday morning to see where things are! I hope to update more tonight! Thank you everyone!!

February 8th: Emily had clinic in the morning and we will see where her counts are! Hoping that no transfusions are needed and just a quick visit!

February 9th: This is our Emily with her platelets at 55 today! Do you know what that means? It means her stem cells worked and it means she will be eligible for other trials to get rid of this horrible beast NB! Woo hoo!

Thankfully Emily's platelets have recovered and we have finally gotten over 55, in order to qualify for any other trials Emily has to have 50.. We finally finally feel a huge sense of relief and that we can breath again because this is what was holding us back to be eligible for anything else.

We did talk with Dr Sholler on Monday evening. Sholler is an amazing woman and what I can tell you all that she has given us "HOPE" That is right, she has given us "HOPE".

So from here, we have one week left at home and then on Sunday, February 18th we head to Philly to stay at the campground that we previously stayed at, where there are some amazing people there! Monday Emily will have her MIBG injection along with talking with Dr. Mattei about her pending surgery on Thursday of removing her broviac/hickman line and having the central line placed and also having her bone marrow biopsy done. Tuesday Emily has her MIBG scan done (scanxiety is already here) and then we meet with Mosse on Wednesday. Right now we are keeping everything open and taking in what trials that CHOP has to offer and also we know what Sholler has to offer us. Sholler has all of our information and insurance information, so should Emily need to go there we will. We have no idea what to expect, because we have no plans, however we can breath easier knowing that her platelets are recovering and we will have options available to us.

We did have her HMA/VMA levels checked, and Dr. Gowda said there is only a small improvement from July, but its better than nothing, but they are still a bit high. These are not valid tests to go by, but it does help to see where things are.

So Emily is doing great right now. She is happy, she is eating, she is going to a school on Fridays that is through the ASK Clinic from 930 to 1230 as long as her ANC stays ok, so we are happy with that.

This is really quick tonight because I really just wanted to update, but I want to watch a movie with the hubby tonight. We have lots of HOPE, this is what matters.

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

Week 2 Post MIBG Therapy of Round 2

Emily opening her package from Sue with a Justin Bieber Notebook! 

Two weeks have passed since Round 2 of MIBG Therapy.  We have 3 weeks left before we head back to Philly and see how this Therapy did for Emily. And yes, I am counting down, counting down because of the fear of what it will bring or that we learn.  Last time we had 6 weeks, but this time they scheduled her re-evaluation scans at 5 weeks. 

As you recall Emily had her stem cells given back to her last Monday, which this leaves her with 3 bags of stem cells left, Thursday she had clinic and needed both platelets and red blood because they were both low.  Her ANC and WBC dropped again, so still being very careful of her not getting sick.  Doug was sick for a few days, so he actually slept on the couch not to get Emily sick. However since being home from Philly this time, Emily just hasn't been herself.  She seems very tired often so much easier, she isn't eating much (where we have started the periactin again since she isn't eating much and her weight is down), and honestly just not herself.  Some days she has been very quiet, not saying much but been very whiney and she has had a few days where she has been saying her stomach hurts (which has gone away after giving her some zofran). Monday, Jan 30th will mark 7 days from when she received her stem cells back, so we should start to see them working within 10 to 14 days.

The past 2 weeks since we have been home have been really hard. Hard because we have a lot of questions, so we have been asking a lot of questions to our onc here at VCU, reading a lot anything and everything, and hearing a lot of children passing and honestly we are scared.  Scared about all of this and what it all means. Last night Doug couldn't sleep, and he was up all night reading and reading, he couldn't stop. He is again reading tonight while I am updating.

Thursday we did speak with Dr. Sholler from Michigan via phone conference, she is one amazing women and knows her stuff. Dr. Sholler told us yes we have some options, but only if Emily's platelets are at 50 or above, meaning they have to recover.  If they are not, we won't have any options anywhere, so we are very hopeful that we start to see her platelets recovering soon..  She says since Emily has never had a bone marrow issue, then her platelets and hemoglobin should recover on their own.  However, when we go back to Philly on the 20th, Emily will have her bone marrow checked again, since her last one was in November. Dr. Sholler has told us what she has available right now, but before we get too ahead of ourselves, she wants to see Emily's scans, so we will send those out to her over-nighted tomorrow.  We may be taking a trip to talk with her, but we will wait to see what comes out of her looking at Emily's scans. We are trying to stay ahead of the game and just know what we have available.  

Overall, we are all home together and enjoying our time together. However this time home compared to the last time, it so much different because our minds are not where they were before.  Right now we are just trying to keep our head above water.  Its scary, we are seeing CANCER everywhere out in the community, what is coming to this world.  We really need some awareness for Childhood Cancer and the awareness.of Neuroblastoma. To keep this post from going array, I will leave it here...but make sure you hug and kiss your kids and tell them how much you love them.

Update on somethings going on right now...

--Love For Emily Fundraiser, continued until Feb 24th. Check out www.emilyhubbel.com to learn about Emily. Click this link to help out if you wish/can.

--will have more information for some fundraisers that are being worked out right now.

--We are working a project ourselves going on right now...we are collecting (not expired) coupons for items such as; shampoo, conditioner, chapstick, deodorant (men and women), toilet paper, tissue, hand sanitizer, razors, shaving cream (men and women), womens needs and many other things.  Since we don't have the money either, but we really want to be able to give back and pay it forward, so we are using these coupons to work out the deals at several different stores to get these items for free to make bags for newly diagnosed families at the Children's Hospital of Richmond.  My sister in law, Tricia, is getting some Team Emily bags made and once we have enough to make at least 30 bags, I will be teaming up with Connor's Hero's who makes bags with different items in them for families as well. If you are interested in helping out with this cause, you can send your stuff to PO Box 5383, Midlothian, VA 23112.