New Plan

Emily wearing her wig that she put n the other night.

It's been awhile since I have updated but really more because we have been trying to wrap our head around everything that is happening and information we have been told. We still haven't wrapped our heads around anything.

We met with Dr Gowda on Friday afternoon of last week and talked over a trial that he thought may benefit Emily! It's a trial that is done at Sloan Ketterling however we are going to do the trial here at the home hospital, and do scans in Michigan. The trial consists of 3 different drugs with Day 1 and Day 15 of Avastin. Day 4-9 will include irinotecan and temolazide Avastin is done at the clinic and the other two are done at home! Emily will have 2 rounds of this regimen and then head back to Michigan for scans. If the scans show improvement, then Emily will move into 4 more rounds of just the irinotecan and temolazide.

When talking with Dr Gowda he really put some harsh reality into play for us. The harsh reality is when Dr Gowda said, "something you all really to need think about is that if the scans show no change, to think about giving Emily a good quality of life and stop treatment!" It's not what we expected to hear, but after 2 years of trying many different Chemos, antibodies, radiation, MIBG therapy and nothing is working. So after two rounds of chemo regimen have scans, and no change we really need to think about things!

Fuck we hate cancer, but we hate neuroblastoma even more. This put a hole in our heart and has really been pretty devastating. We want Emily here longer than we are and see her doing all those things that she should be doing!! we want her to celebrate her 6th, 7th, 8th and so on birthdays and be here for Christmas for years to come. For someone to make it real and smack you in the face that you need to give this up, really breaks you apart. When Dr Gowda said this I felt my heart drop to the floor and Doug just look at me and look at him. Ok pick your heart back up, baby girl can fight this. She has always been a fighter, and always does it with her amazing smiles and dimples that you just want to pinch her face and love her like there is no tomorrow! I've become pretty quiet as I call it in my own world and been in a hole trying to wrap my head around what is really happening here while at the same time trying to move forward with life and everything going on around it... Doug is really messed up about all of this too, trying to recover and find hisself again. But Its scary and It's a harsh reality, harsh reality that breaks a parent into pieces and brings you to the floor hurting and crying. Wheres the rock you want go throw and break something! I honestly never knew what my heart hurts meant until this. My heart hurts and I know that Doug's is hurting too. There was something that I recalled today in my thinking ( we do this a lot lately) but at the beginning someone told us "this gets easier with time," I wish I remember who told us that because I would really go back and tell them they have no idea, because this has not gotten easier , actually it's gotten worse and harder. The decisions are beyond painful and hard to make. I can still recall when the first chemo was being hung, I couldn't stop the tears...the tears today are much deeper and more painful. I remember the first day of radiation and having to walk out of that after laying her on the hard table and seeing the laser beams on my daughters body, and crying. The tears today are still much more painful. I recall MIBG therapy and crying because she was crying because all she wanted was her mom or her dad and couldn't because of the radiation in her body. The tears today are much more painful. Starting nifurtimox with chemo and hoping with all my heart that the treatment would work and the highs and lows of it. Again much more painful knowing today we are not looking for a cure and it could become a possibility that we are not even looking to keep is stable, but to allow her to have a good quality of life.

Anyway, Tomorrow will be day 1, however a CBC has to be done first and if her platelets aren't at a level he is comfortable with he may ask that Emily not use the Avastin at this time, because it could be hard on her platelets to recover. Last Wednesday Emily's platelets were 47 and for this trial you need to have 35. Dr Gowda feels her platelets need to be at a comfortable amount. If CBC shows platelets are still recovering Emily will start Avastin tomorrow marking day 1. Monday will be day 4 and at home Emily will start the two Chemos again i said at home. They will go over how these need to be taken and timing and all. We've had to make calls to get these drugs at home and not many places cover them, and when I finally found one, he came back with a crazy high price, however it was the price. Our awesome nurse was able to get one of them through the oncology clinic for almost 70% price cheaper, but not the other one, so we are really thankful for at least one of them being cheaper and paying a huge out of pocket expense is not as much, but still expensive. Thank you Elaine (Emily's nurse since she was diagnosed) for all the hard work you do. She will go back for count checks probably once a week for this 21 day course regimen and day 15 go back to clinic to get the second Avastin.

I need to end this because it's bringing me to tears which have been a many lately just thinking about everything. But on a happy note, Emily is still doing amazing. She is so full of life and even went to school today, although we fear the flu outbreak right now and all the germs. (Never thought I would be a germophobe, but the germs right now are horrible.) The picture attached is of Emily putting her wig on the other night.

I ask that you all make sure you hug and kiss your kids every night and tell them how much you love them. Please always tell them how much you love them.

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!

Update on Michigan Trip

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

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

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

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

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

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

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

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

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

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

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

Worry and Hope

Emily posing with her little hair piece in she received for Christmas.

Written by Shannon, Emily's Mom

The last few weeks have brought a lot of worry about what is happening in Emily's body as we wait for the next step with scans to see what is happening and where we decide to go. Emily has not been in any pain, and she has had plenty of energy (energy that daddy and I love to see), she has been to school this week. she has played with her sisters, she has enjoyed playing on the Wii Kinect, she has just been Emily. Now we would lie if we didn't tell you that each whimper of something hurts, and she touches somewhere, that we are not worried, because we are.

Now with having to make a trip to Michigan tomorrow that we were not expecting just a few short weeks ago, is even more worries. There have been some amazing people and you know who you are out there, thank you so much for all you do and all that you continue to do, because it all helps. We did learn late yesterday that there is a wonderful volunteer from Wings of Mercy who can pick us up tomorrow and take us home Thursday. We are thankful for that, and thankful to have a rental car waiting for us when we arrive with the wonderful pilot getting a great rate for us. Thank you!

I really haven't updated much more or less because our hearts are full of anxiety and worry and have been since we have been home. Since we have been home, there have been children who have passed from NB and other childhood cancers, and there have been relapses, so most of my update would be full of sadness and pain. So, I want to leave it at this...make sure you have your purple chalk (for neuroblastoma) (or the color chalk for childhood cancer) and yellow for childhood cancer awareness and make a ribbon and write under the ribbon, "Children get cancer too!"

Tomorrow is a new week....it starts Emily's week of what is to come for her.

~Shannon

Written by Sue...

With this new week comes a week of worries...

Tomorrow is the worry as all the Hubbel's board a tiny plane (THANKS Wings of Mercy you are truly an amazing organization). Tuesday brings the worry of someone other then Elaine accessing Emily's port (love you Elaine and the comfort you bring to Emily). Wednesday brings the worry of yet another MIBG scan, although Emily handles them like a champ I still worry what all these injections are doing to her little body. Then come Thursday...23 days since we heard the word,"progression". Worry of what will Dr. Sholler have to say...Worry about what the cancer has been doing the last 23 days...Worry..., are the DFMO pills doing their job...Worry about what is the next step. I worry about Doug and Shannon and how they will find the strength to keep pushing forward...I worry about Emily and what she is thinking and feeling.

The only thing I am not worrying about is keeping HOPE alive...we have to keep HOPE in our hearts, in our thoughts and in our minds. My HOPE for the next 4 days is in TEAM EMILY. We are ready to fight, ready to support, ready to pray, ready to keep the Hubbe'ls in our thoughts.

~Sue

Michigan Again

First, I just want to say thank you for all the love, support and thoughts and prayers that you all have continued to send our way as we continue in treatment with Emily. As many of those emails came sending there love, I have also been getting emails just recently of how can people help, and what do we need right now. We are sure that more traveling is coming up for our future, and next week we could very well be traveling by car to Michigan on Monday evening if a flight is not available as well.  So, gas cards, gift cards and donations made on Emily's webpage are very helpful to us. Our address is

Hubbel Family

PO Box 5383

Midlothian, VA 23112

We did receive notification last night that Emily will need to be back in Michigan early next week.  Dr Sholler would like for her to have scans again, which will tell us how quickly she is progressing and then we can talk about what she has available. We will need to be there early Tuesday morning.  We have gone ahead and started the process with Wings of Mercy and we are hopeful that they will be able to help us, but with the late notice, we need to have a backup plan. We possibly will have to drive and gas is going up again!  We have already booked the Renucci House and thankful that they have availability.  And just waiting for notice right now on flilght, because we will need a rental car if flying.

We will also meet with Dr. Gowda again tomorrow more or less to see if anything else is available, hopefully view scans that should be here today from Michigan from the last time.and to check Emily's counts again.  Her previous platelets were 43, so we are hoping that they are going up again!  Some of the trials we talked about before was either something at Sloan Ketterling or CHOP. We will see.  One of our biggest concerns is making sure that Emily stay on the same type of MIBG/CT scan and then making sure the trial is really what we want moving forward and has the obvious desire, getting rid of the new disease and not progressing.

We really hope to have a treatment plan soon, so that we know what we are doing moving forward.  This being in limbo and not really sure of what is going on, is the disease progressing, a bit stressful.
I will try to update more later.

Happy New Years!!!

Happy New Years from the Hubbel Family to all of you! We thank you for your support the last 2 years and your continued support, it honestly means so much to our family! Thank you so much for always loving us, leaving us wonderful messages, and all the amazing things you all have done for us. We honestly wouldn't be where we are today. Emily has a big fight still and with you all behind us, we will make it through. Thank you so much for being a part of our family!!!!