As Parents...

This is a bit raw tonight, because our hearts are hurting badly!

We all have to make a lot of decisions as parents, a lot! When you get pregnant there isn't a guideline on what to do and there isn't a handbook that tells you decisions you may or may not have to make! Prior to coming a parent, no one tells you just how many decisions come into having to be made? From small decisions to big decisions... Decisions that are easy to make and some that are hard to make! Some that could change ones life and some that could change the family's life!

But as parents with a child with cancer or other illnesses parents have to make decisions that no parent ever wants to make and no parent even wants to sit through and listen to have to make them later! When your child is diagnosed your life changes forever and you realize that you are now signing papers allowing the hospitals to give fucking toxic medicines in your child's veins! You are watching these toxics drip by drip going into your child's body and now making sure the hospital is doing everything right because you are in a fight mode! Fight this damn disease that is invading your child! Your signing papers to do surgeries knowing side effects could be life altering to your child or even worse death! Yes you have to sign these papers and each time yo sign these papers your heart breaks because it just reminds you that your child has a disease that you are trying to rid of their body so they have a fighting chance to attend grade school, middle school, have their first dance, high school, homecoming and prom , their first boyfriend and their first breakup and getting married! Fuck it hurts to even fathom the thought they may not get any or all of these firsts and just events! It scares my every being to think that Emily may not be in that rear view mirror and hurts to think that "daddy's girl"...

Today we came to the realization that the fight we once had is not the fight we have now!! The fight is no longer about trying to cure Emily, the fight is about keeping this disease at bay and keeping her comfortable and with a good quality of life! Yes really that was our conversation a conversation that no parent wants to have and to have about their child! Realization that this damn disease has a grip that we have to get our hands on!! Our hearts hurt, it js pounding with fear, sadness and worry and the heartache is painful!! It is getting harder and harder to talk about! People ask about Emily or how things are going and I've come to realize it is harder to talk about anymore to anyone, it's as if we are back at the beginning when it was hard to talk about but now it's different, our hearts hurt, they are bursting at the seams and just want to rip open and scream out!

So as parents Doug and I are forced to figure out what is next for Emily and as parents we have to talk to Emily and tell her what is going on! We have to tell her we are not almost done with treatment, but that now we have to fight harder and hit this freaking disease again! As parents we are still looking at trials and trying to decide what to do !! As parents...

Today was hard, hard to talk about what the doctor here feels that we should do and watch as these doctors and nurses that we have spent the last 2 years with have more emotion about our daughter that we all had tears in our eyes! Emily has started to talk more to Dr Gowda and loves Elaine, something that we all take notice with! Not a dry eye in that room, talking about Emily who is progressing from a damn disease that should never even be in her body! A disease (damn cancer) that should never be in any of our children's body, that we don't even know what is happening! This disease can become so aggressive that we won't even know what hit us!

Just know that we still have our big guns on and we are not ready to give up this fight, but we are bursting at the seams that we are about to blow! I would be lying if I didn't say we are not scared, because we are scared of everything! Scared of EVERYTHING!!

We haven't made any decisions just still talking them through again as parents! Waiting in scans to be scheduled in Michigan or early January!

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!

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.

Stem Cell Infusion Complete

We have about a month before we go back, and we are trying to be prepared and be "one step ahead"!!! Last night I emailed both Dr. Kushner at Sloan and Dr. Sholler in Michigan about the situation that we are in and to see if there are any options open for us should we find ourselves in the same place where we were prior. We haven't heard back from Sholler yet, but we did hear back from Kushner and I can honestly tell you, we are still not impressed with Sloan anymore than we were back when Emily was first diagnosed and we went for a second opinion.   He responded with: "You are being followed by very famous group regarding neuroblastoma – the CHOP team.  And your daughter is enrolled on their MIBG protocol.  We do not recommend that family take child off a formal protocol.Of course, wishing you the best!"  I was shocked to get this email and responded back quickly with: "We appreciate the prompt email, however don't rule us out. As for being famous, we also heard a lot of great things about yourself. We are not looking to take her off protocol, we were given the quality of life speech! She has scans on feb 20th after round 2 of MIBG therapy, we want to be prepared should her scans be stable again and if there is something else out there better!  We need open options and hope that you can let us know what they are!"   I was even more suprised by the response: "You are keeping her on protocol, CHOP has wide variety of treatments available if scans are stable again. It is not appropriate for us to intervene with recommendations unbeknownst to your VCU and CHOP oncologists and without knowing full details of your daughter’s course." 

My first thought was "Fuck Kushner!"  I never once asked Kushner to take us off the current protocol, because we cannot be taken off the protocol until after scans.  I never once asked him to intervene, we asked for what are our options and do you have anything for us should we find ourselves back where we were before?    Doug and I are trying to be prepared, I of course responded back asking did he not want to help us by letting us know if there was anything else out there, and I haven't heard back from him. I'm heartbroken, to say the least that we are looking for options for our daughter to fight this stupid disease and he doesn't want to intervene.  Really?  My second thought is still "Fuck Kushner!" 

CHOP isn't our last stop, we will do what we have to do to keep fighting and go where we need to go to fight this fight.  We will search and lose sleep until we find something, we won't give up!  Neuroblastoma sucks, cancer sucks and we aren't done!  Hopefully I hear back from Sholler within the next couple of days so we can get scans and whatever she needs out to her.  We look at Emily and she is so beautiful, so happy and it is hard to believe that there is cancer in her body, cancer that is not responding.  While she is only 26 pounds she is one strong kid and she is fighting with all she has, and you know what she has no idea what she is even fighting for.  She is so strong and we are so proud of her, we are so very proud of her and how brave she is.  The more we read the more we are scared, scared for the what ifs, scared of what tomorrow will bring! 

Emily was inpatient for the day today at VCU since 9AM this morning on the BMT unit to receive her stem cells back.  ACK, so many memories of that floor for oh so long back over the summer!!!  She was pretty worried that we were being admitted for overnight, but we kept telling her we weren't but she didn't believe us. The purpose of giving her stem cells back was because her platelets are not recovering and this should help to boost her platelets and hemoglobin. If the stem cells work, we should start to see it working within 10-14 days.  We knew going into today that Emily would need platelets because she had bleeding gums over the weekend and a bloody nose  while we were there today and we thought it was possible she would need blood.  She was at 8 for her hemoglobin so we are going to wait and see how she does with that one, but its a possibility she could need blood on Thursdays appointment.  The stem cells were given back around 140pm and then afterwards her platelets were given and then started the 6 hours fluids that she had to have before heading home. The horrible smell that was all so familiar, but Emily did so well and had a benadryl induced sleep for a few hours. We did not miss the BMT unit floor at all!. Finally about 830PM, we were homebound and Emily is already asleep!  She did great today!

Please dig deep in your hearts and send all the love and hope that the stem cells work and brings those platelets back on up and when we go back on February 20th, those platelets won't cause a problem and we have some other options open. 

Also don't forget, Doug and I want to find ways to give back, give back for all those who have helped us, we don't have to the funds, but there is something that we can do.  I, along with some other friends know how to work coupons to get items for free, so we are making bags for new diagnosed families.  If you have any extra coupons, please send them our way to make bags for new diagnosed families! I have already started a stash of things and we are so excited that others want to help out with sending coupons! We are mostly looking for coupons for deodorant, shampoo and conditioner, facewash, toilet paper, tissues, toothpaste and toothbrush, razors and shaving cream, female and male needs, detergent! Antibacterial handwash a big one!!! I know we go through a lot of this!! Send them to: The Hubbel Family, PO Box 5383, Midlithian, VA 23112! Thank you so much!

The meals that were started last week, have been amazing. Thank you to all those who have been so amazing and bringing us meals and thank you Fairy Godmother Project for being a help to our family.  The meals have been more than helpful on busy crazy days when making dinner is one last thing that we want to think about, so thank you!  The coupons we have received so far, THANK YOU!  I will start showing you guys pictures of the stash, so you know how things are going!  THANK YOU!  And we do still have people asking where to send cards, gift cards and donations, they can be sent to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

Or donations can be sent to: All donors may mail funds to the account at: Dominion Credit Union PO Box 26646 Richmond, VA 23261 Write "Emily Hubbel" in the check memo. Dominion Employees may go through the bank. or you can use the Donate button on Emilyhubbel.com.

Remember give your kids hugs and kisses and lots of love each and every night!