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!

Reality

We arrived in New Jersey on Sunday, to stay at Timberlane Campground. Thank you to the campground so much for your kindness and generousity and offering a discount for us while we stay with you for Emily's treatment. It means so much to us and our sincerest thanks to you! This week while here in Philly/New Jersey we have really tried to keep ourselves busy and not think about the obvious of why we were here, scans to see if the MIBG Therapy was affective. Emily finally got to meet her friend, Sue, who drove 6 hours to see us and stayed in the clinic with us and went to the MIBG injection and lunch. Emily didn't require a blood transfusion or platelets on Monday, they actually appeared to look as if they were going up, so we were excited to get these results. Sue is such a kind, amazing woman...she is beyond amazing for many families and she deserves this for us to say Thank you and we love you. A family that we met the last time we were here, The Rinaldi's, invited us for dinner on Tuesday night. Tuesday Emily had her MIBG scan and this was perfect to keep our minds from the obvious and just enjoy the company of other adults and the kids to play with their kids. We thank you Rinaldi's for inviting us and having us over for the night. I think we ate till we were full and just enjoyed the company.


Today was result day, the day of facing reality. We were meeting with Dr. Mosse to go over the results of the scans that Emily had previously. It appears that we are no longer dealing with Dr. Bagatell and we are with Mosse, which either way is fine being that she is very well known in the neuroblastoma world. Well the news was not what we had hoped for, we had both tried to walk in there feeling very positive, but it wasn't positive. Emily's disease is considered stable, which in terms is a good thing, because it means no progression. However, there is no regression. Emily went through 6 rounds of chemo, 2 extremely high doses of stem cell transplant, 12 days of radiation, and 1 MIBG Therapy and there has been no change, No change, NO CHANGE. The spot on her skull that we had been previously told we can lay this one to bed because it is not MIBG avid, Dr. Mosse says it is and it is there and the MIBG picked it up. While this completely bothered me, it doesn't change where we are today. It doesn't change what we are doing or the reality of where we are. The spots on both of her femurs and both iliacs are still there, completely unchanged. The spot on her spine (l4) is still there, again no change. The spots that were seen on the "super scan" don't show on this scan, but they don't compare those and didn't expect to see them. But she explained they were seen in the left tibia and what appeared to be in her upper abdomen, but it wasn't know exact where it was.

The talk we had with Dr. Mosse was a serious talk today, one of which I never thought we would have. (F U Cancer) I still remember when Emily was first diagnosed and the day after the surgery the doctor, Dr. Goddair, that walked in and said you know she is not going to make it. I was pissed and said Thank you and she knew it was my cue to get the hell out of our room. The talk we had today, was not what Doug and expected and all I was reminded of is what Dr. Goddair said. So, what does this mean? Emily is not progressing or regressing, it is great that she is not progressing, but Dr Marris feels that the previous MIBG Therapy put a stop to anything progressing. Their recommendation was to go through with Round 2 of MIBG therapy and then 10 days later Emily receive a bag of her stems cell at our home hospital to keep things at bay...what is the goal we asked? She said the goal is to give Emily a "good quality of life" (we heard this a lot) and to not have her progress in the mean time. Is there anything else that we can do instead of going into Round 2 of Therapy? Not at this time Emily is not eligible because her platelets because they at least need to be at 50 to be eligible for any other trial and they are currently at 15 fighting to come back. So we worry if getting Round 2, what happens if her platelets don't recover? She said most children's platelets recover after receiving stem cells, unless there our other situations. So, we really have no where to go. We felt lost and the reality of two parents trying to make the best decision for our daughter while breaking down and also trying to remain composure for the kids, was a task that was much harder than I ever thought we would have to do. We both emphasized that we don't want to be put in a situation that after Round 2, and stem cells given back, and platelets still don't recover and we find ourselves with no other place to go. We don't want to be there. She didn't feel time was of an essence and that Emily needs to do MIBG now, but at the same time she didn't want to wait any longer than a week to start Round 2.

Questions that were asked, what does this mean to us? Does this mean that Emily will never be NED? Dr. Mosse says that with induction period of 6 rounds of chemo, 2 extremely high doses of stem cell transplants, 12 days of radiation and then 1 MIBG Therapy and there hasn't been any change, she doesn't feel that she will ever be NED and that we will be dealing with this for...well as long is Emily is alive. Doug said, "I need to know the answer to this question and there is no other way but to just ask it, will Emily die of NB?" Dr Mosse said, "Yes, but there is no way to say if it will be tomorrow, 6 weeks from now, 6 months or a year. So we need to give her a good quality of life and keep things stable." What the fuck? The pathology we received at the beginning we kept being told was good and that we will have our daughter for a long time and now it is "children with more than 3 spots when diagnosed do poorly and dont normally make it." Was this real, where we really sitting here in Philly and hearing Dr. Mosse say these words. They were real because I was wiping tears from my face, and those tears hurt, they really hurt. Who thought this is where the hell we would be, who thought that we would be dealing with neuroblastoma and trying to make sure that we make the right decision for our daughter. Who would have thought.

The struggle was then should we move foward with MIBG Therapy in hopes that we can get her platelets back up and then move forward with another therapy. Today's platelets dropped AGAIN, and she needed both platelets and blood today and this told us we have no other options right now anywhere, move forward with MIBG Therrapy. There is still this struggle in my head, is this the right thing, are we doing the right thing. We just have to totally believe with all the information that was laid out in front of us today, that we are making the right decision.

You look at Emily and she looks amazing, she is happy and just looks so healthy. You would never know that underneath she has cancer, cancer in a 4 year old. Cancer that isn't fair that our daughter has and that it will take her life. Neither of us are at a comfort level to just stop and think this is it for us. We won't stop, MIBG Therapy is where we are tonight. Round 2 admission. Then stem cells 10 days later and then other opinions with Sloan -- Kushner, Giselle Sholler in Michigan, and then St. Judes. We won't stop, and we can't stop, Emily is happy and just a joy to be around and in no pain. We can't accept the fact that it is said yes she will die, because we won't give up. So, Neuroblastoma, you can take that, and find somewhere else to go. We must find a cure for Neuroblastoma, children should never have to deal with this and parents, like ourselves, should never be in this situation wondering if we are doing the right thing treatment path and did we ask all the questions that we should have asked to do the right thing. Are we going to be playing the "Would of, should of, could of" game? The regrets and the I wishes. This is not fair and these are words I don't like my kids to say, but you know what this isn't fair.

But sad reality is, we are scared. We are scared beyond our minds. Scared to lose our daughter, scared because of all the "what ifs"! Its scary, because the reality is the word "death" was thrown at us today. I couldn't catch it, because it was thrown and smacked me in the face and nothing I could do to stop the tears, because they came. Scared because I again watched my husband, who doesn't cry about much, break down again today. Why does this happen and why did it happen here, because this should not have happen!!!!

We've asked if Emily could get a port placed so that she can enjoy life and not be limited to things (no pool, no good ol soaking baths and no dressing changes unless she is accessed). Dr. Mosse said that is something else to give Emily a "good quality of life" and we could plan to do that when we get her 6 weeks scans and bone marrow biopsy.

Please send us lots of love, support and thoughts that we are doing the right thing and going in the right direction and that we continue to make the right decision so that happy lives a long happy life with us. I know that neither Doug or I can handle life without her!

I did receive an email from an 8News reporter who wanted to meet with Emily and I tomorrow (Thursday) and do an interview to try and push about the Mattel Cancer Barbie doll. I sent her an email back and thanked her and said I would love to do this because I not only want to get more attention on childhood cancer, but we want more people to know about our amazing Emily and of course put about this Barbie, but that we are not home. Could she please wait until next week and we would be happy to do this and do a video inpatient here at CHOP. I haven't heard back from her, but I really hope to get to do this. While I know I would be really nervous about being front of a camera in front of people, my thoughts about childhood cancer, my daughter are strong and I feel it would be important. So I am hoping to hear back that it can be placed on hold until next week.

Its 3AM and OR will be here early in the morning to place the foley, I have been told they could possibly be here at 6am. So it will be a long day with no sleep if I don't get a few hours of shut eye. So I should get some sleep. I have been receiving quite a bit of emails the past few days of people asking what do we need, what can they help with? Thank you all so much for all of your kindness, thoughful messages, emails and words, they all mean so much. But really honestly we need lots of love, support and thoughts. Gift Cards for traveling since we are looking into options still and if we can get her treatment somewhere else, we will go there, donations are certainly very helpful right now. Gift cards 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. Again I just am posting this because so many have been sending emails and asking. So I want to say thank you again!

And like I said really just your love, thoughts and support mean so much. I am sorry if you have emailed and I haven't responded, I am sorry if you have left messages on facebook and I haven't responded, but honestly the past few days have been very overwhelming. I do apologize. Thank you again for your support, it means much more than you will ever know.

Make sure you hug and kiss your kids and love them with all you have. Good Night. Please hope that this MIBG Therapy will go smoothly and Emily handles this round much better than she did last time.