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:
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!
Sending luv and support and huge hugs.ReplyDelete
Hi Shannon and family, I've been following your blog because of the coupon site but only saw about your sweet daughter recently. My own son is 7 and was diagnosed with Stage 4 neuroblastoma. I share the same sentiments you do toward cancer and neuroblastoma :). We are being treated at St. Jude and so far things have been wonderful there. I don't know if you're open to suggestions but they may have some information for you. God bless, I keep you and your in our prayers! (we're on caring bridge at www.caringbridge.org/visit/brentpowersjrReplyDelete
Emily you are such a strong and brave little girl!!! Hang in there sweety and keep fighting. Show those doctors just how wrong they can be! We love you and are continuing to pray for you. Hope you are better soon emily (Alex)ReplyDelete