The Weekend

I know many of you are looking for an update to see how Emily is feeling, texts, questions, emails and we haven't responded... We really haven't been up for much talking lately, so if you have called and/or we didn't respond to texts or emails, we are sorry!

Well, I wish I could say that there has been change of some kind, but in all honesty there really hasn't been any change.  The major change would be that she is having pain along with two of the spots that she says hurt to walk. We can't figure the pain out, but if you touch them she screams in pain.  We have tried ice, heating pad, frankencense, emla cream, but really nothing seems to help.  The time she seems at most comfort is when she is asleep, as long as you don't touch the spots.

She still has the four spots, and while 2 of them seem to look better, the other 2 actually look worse, bigger and swollen. While we know they are not bug bites, because there are not actual spots to look like they are bug bites, we just don't know. The pain has been horrific at times and enough that we have had to start the Tylenol with Codeine again today from when she had her bone pain last week, but she mostly has been sofa bound or in the bath or shortly in the pool. She said they don't hurt as bad in the water. 

This weekend has been really hard on Doug and I, mostly because of the pain she seems to be in and we don't know how to help her to make it better and really just what is happening.  We have been home all weekend, while most of it has been seeing her in pain, and this is really hard on us.  The pain she seems to be in is really scaring us. At one point, we almost emailed Dr. Gowda, but she doesn't want to to go the ER. On top of the weekend, Thursday we had a pretty bad storm and we lost Comcast so we haven't had any internet, phone or cable.

I did speak with Dr. Sholler on Friday, and she too is concerned about the spots on the skin. She said the bone pain she really thinks most of that is from the Zometa.  She requested that Dr. Gowda get a LDH and HMA/VMA. Which they were done. (Thankfully Friday afternoon Dr Gowda emailed and said that the LDH has come back normal and that the HMA and VMA should be back Monday or Tuesday) She also said please don't cancel the MIBG scan as of yet that you all have there, but I am going to start working on getting one in Michigan.  The concern would be that if this is truly progression, Emily would need to have the MIBG scan there to qualify for another trial there and insurance may not approve two MIBG's so close together. She said that she wasn't real sure about getting Emily in this coming week because she has quite a few kids coming in, but she would see what she could do. She said she has hopes that the spots are only infection, but that she couldn't lie and say she wasn't worried that they are anything else. As of right now, she wants to play it out and see what happens at tomorrows clinic appointment and then go from there. So, its really a possibility that we could be making a trip to Michigan.

As for Doug and I, we have tried to read and read and find information, but we have been unable to find anything much really. What we really found is that with the skin neuroblastoma is only 12% that get it and mostly found in infants.  So we have to look at it that the possibility is 50/50 chance.  Yesterday I think I tried to read and find out about information, that I just had to get away from it, because it was really starting to drive me crazy and the anxiety was building.

I have received a few messages again and instead of replying to all of them, it is easier just to post so that you all know... but most have been asking what would be helpful during this time... gas gift cards in the possibility we have to travel, donations by clicking here...others are asking what is Emily into these days and honestly she has been into her finger nails, painting and her Nintendo DS 3d.

Chemo should have been starting as a possibility of tomorrow if her ANC was ready for the last round of this trial, but Dad and I will not allow her to start with these spots and not knowing what they are. Dr. Gowda also indicated that right now any thoughts of a biopsy is not good because of low platelets.  She is still off the Nifurtimox until we know what is going on and Dr. Sholler is agreeable with this.

Tomorrow is a new day, and the hope is that they are better, almost gone and Emily be moving forward. Please send your thoughts and love.  Also this week I will be trying to work on finding a place to get VA Blood Services out and have a day where people come and donate blood or platelets in honor of Emily (Thank you Mary Ann for getting a number for Emily).  We will update you all as we know more information as to what is going on. 

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

The Lows

Emily today on the couch watching a video on her ipad, tired.

The past two days, Emily has been in her lows. She doesn't have a lot of energy at all and really hasn't done a lot of moving from the couch except for going to the bathroom. Tonight I did get her off the couch and into the tub, hoping that it would make her feel a little bit better. She doesn't really want to be messed with by her sisters and just wants to be left alone, except to rub my arm or daddy.  Her eating has definitely decreased, enough to which has really concerned us. We are continuing to try and work with her and using the megace in hopes that we can just get her to eat.  She is eating a few things, but not a lot.  We obviously know the culprit and what is causing her not eat, however we are just continuing to hope that we can work around that.  We are on the last 2 rounds of this trial, and like Dr Sholler said it would be beneficial if she can handle the dosage that she needs. So we are trying.  What we don't want to happen is Emily has to go inpatient and be placed on TPN and lipids and we know she doesn't want to either. Plus the TPN will only set us back, so baby girl we really need you to eat.  I know she is trying really hard for us, and to us that means the world.

Tomorrow she has clinic, to have her counts checked and see where things are.  I am sure she will need platelets, not sure about blood, but it is a possibility that she may need that as well.  Its probably going to be a long day in the clinic.  We are going to imagine that she is probably at zero for WBC, which means can't calculate ANC.  So we continue to hope for no fevers.

This is going to be short tonight, I am tired and ready for bed, but really just wanted to update and let you know where things were for Emily.  Send your love and thoughts..

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.  

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!