Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Monday, September 23, 2013

Chemo/Chili's - Day 4 of Round 9

September 23rd -- today at Chili's Restaurant 100% of all net profits go to St Jude's for the children and Childhood Cancer Research. All you have to do is go in and eat or order out.  We don't normally eat out, but tonight we decided to eat out for the kids and for Emily.  #morehope

Today also is Day 4 of Round 9, which means its time to start the chemo. Hopefully this chemo remains easy on her stomach and she does well and can handle school ok. We will do the chemo at night since there really is no other time that she can do it since she is in school and then having 3 hours of no eating. She did really well with this when we did it during Round 8, so I'm sure she will handle it well this time. Because her weight went up, Dr Gowda increased her irenotecan a little bit also.  We are hopeful for another easy round of chemo.

Daddy went and had lunch again with Emily today since he was is working late. Emily enjoys having daddy come for lunch just as much as daddy enjoys going.

Busy times coming ahead with celebrating Emily's younger sisters birthday Thursday, she will be 4. Older sister has a dance on Friday night and then 2 birthdays next week, daddy's birthday on October 2nd and older sister Jessie's birthday on October 3 (she will be 12)!

Just a quick update with how things are going. We will continue to keep you up to date.

Remember to hug and kiss your kids and tell them how much you love them.


A few things going on right now, a couple of fundraisers:

September is Childhood Cancer Awareness Month. 

Part of Origami Owl's Mission statement is to "Be a Force For Good" so Tammie Darko has chosen to donate 15% of all sales made through this fundraising party for the month of September to Emily's Journey to fight Neuroblastoma. 
Please take a moment to read about Emily Hubbel's Journey. 

She will also be donating "Warrior, Fearless and Hope" Tags" to Emily's family.

Go to www.tdarko.origamiowl.com to order your locket or special tags, etc...early Christmas shopping to support this great cause. Choose party id 210154 Emily's Fundraiser at checkout. You can also place an order directly with me by emailing it to LoveTheLockets@live.com

Thank you for your support in advance.

September is Childhood Cancer Awareness Month.

Our goal here at Scarlet Scarves is to help raise awareness of Childhood Cancer and to raise funds for cancer research. Please take the time to read about each of these amazing children. Together we can find a cure. By making a purchase goes to the family

Friday, September 20, 2013

Clinic - Day 1 Round 9

Emily had clinic today for us to talk with Dr Gowda to go over results and where things stand as of today and how we are moving forward.

Final results show uptake in left base of skull, right sphenoid, left orbit and multifocal aras in the vertebrae includind T8 and T11 through L1 and L4. There is stable uptake in both iliac bones and proximal femurs. So in comparison to the previous scan, they are stable with no new areas of activity.  The final bone marrow results did give Dr Gowda some answers on how Emily's bone marrow is working and able to produce the red cell, platelets and white blood cells. There is marked thrombocytopenia (low platelets) which we know. The bone marrow also provided us some answers with why Emily's platelets are having a harder time to come up when on treatment. The right side of her marrow shows 70% cellular make up of red cell! platelets and white blood cells. Dr Gowda said children on chemo they expect to see 70-80%. Emily's left side shows 50% cellular make up. These answers some questions on the platelets. Because of this though Dr Gowda wants her platelets to always be above 30, so this could mean that she has more platelet transfusions while on the chemo regiment.

Dr Gowda agreed with moving forward and doing two more rounds of the Avastin/irenotecan/temodar trial. Thankfully today her platelets were 41 and she didn't require platelets and she was good to start. So today started day 1 of round 9!!! Wow round 9!!! Scary, but Emily has had a lot of chemo under her belt, but she is doing great. Dr Gowda doesn't feel it's a time to not do anything, and honestly I'm not there either being that she just progressed in December. But as parents it so hard to keep it going, knowing so much more now that what we knew before. But stopping could also mean giving the neuroblastoma time to come back. So we move forward, two more rounds them back to Michigan for scans. Hopefully the next visit is nothing like this one was. 

Dr Gowda still wants Emily to get a bag of her stem cells sometime in the future, but he is ok right now with holding off on them. 

Today while getting her avastin, Emily started doing some of the work that was sent home from school for make up for missing today.  So proud of this girl, she just keeps rocking.  Dad and I love watching her learn, and she is doing so well at school. Daddy went and had lunch with her again yesterday and she enjoys that.  She also is really starting to get used to the Benadryl and doesn't sleep as long as she used to with it. But today put a interesting day with the fire alarm going off at the hospital and everyone having to go out. Interesting. Thankfully Emily was done and Elaine was able to get heperineze her line and when we got home, I went ahead and deaccessed her. 

Remember to hug and kiss your kids and tell them you love them. Have a good weekend. 

Wednesday, September 18, 2013

Quick Update

We received an email from Dr. Sholler today letting us know that the bone marrow and MDS are both completely negative. This is good news, because if the marrow were positive for MDS we would have to stop the current regiment that Emily is on. Thankfully that is not the case, and her marrow looks good.  Doug and I meet with Dr Gowda on Friday for clinic and to go over the options that we were given. Again we will most likely go with two more rounds of the avastin/irenotecan/temodar that she has been on. She has been handling that very well, with minimal sickness, and even gaining weight, 

Emily was so excited, she was able to ride the school bus yesterday for the first time with her BFF.  It's a big deal for dad and I to let her ride the bus and even harder for dad. Dad drives Emily to school every day and walks her to her class, so this is hard on him. But it is also hard on us because of germs and worrying about the other kids, but we also know we can't protect her from everything. However Emily is doing great and loves it.  We do know that there seems to be lots of sicknesses going around, so that is another concern for us, worrying about her getting sick since her immune system is compromised, which could mean hospital inpatient sickness or even fatal. We are constantly on her about keeping her hands washed and hand sanitizing her hands often during the day. If flu season is as bad as it was last year, Emily will be staying home and we will have the home bound teacher come again. 

Just a quick update. Remember to kiss your kids and tell them how much you love them. 

Monday, September 16, 2013


We finally got the call from Dr Sholler tonight. Results are stable with not much change from the previous scans in July. She said preliminary results on bone marrow and MDS are negative, but she will get the final results by Thursday.  Doug and I are happy there isn't any progression and so far bone marrow looks good. Platelets are most likely not recovering as quickly because of the continuing of treatment, but they could be worse. 

We have a few options of treatment, and we will meet with Dr Gowda this week to go over options and what we are thinking moving forward. Emily also needs to have her platelets checked because the last time they were checked was last Thursday.

Right now we could do:
**another two rounds of what we have been doing and go back to Michigan after two rounds
**compassionate trial of DFMO (will have to travel back to Michigan to start this within 14 days of scans)
**TPI-287 (will have to travel weekly to Michigan if we chose this route)

We most likely will do another two rounds, but Dr Gowda wants to also talk about Emily getting some stem cells back to help her platelets. So we have some things to talk with him about!

Emily looks great and has been eating well. Dad and I are so happy with how well she is doing at school and enjoying it. She is growing up and becoming so independent. She told daddy when he drops her off at school if he could just take her to the door so she can walk to her classroom by herself. Daddy said she did well and didn't even turn around to see him, but almost sad that she is growing up. 

Thank you for all the love, thoughts and prayers for our girl as she went through scans.  We are still hoping to hear those words one day of clear, so we will continue on the fight and we are hopeful to get there. 

Please remember to hug and kiss your kids and tell them how you love them! 

Friday, September 13, 2013

Update on Michigan/Scans

Wow its been a month since our last update. OOPS.

We had originally planned on doing three rounds of the Avastin/Irenotecan/Temador trial from the last set of scans in July to allow Emily time at home and more time at school. Last year on the first week of school, she was in Michigan getting scans, so she didn't get to really figure out what school was all about not being there the first week. We wanted Emily to enjoy life outside of the hospital and with her friends where she belongs.
Like I said we had originally wanted to do 3 rounds so she could have about a month at school, but always true Emily style, that plan changed. Dr Gowda (VCU doctor) was concerned about her platelets not recovering. For round 7 Emily was needing platelets once a week because they were not recovering we even made round 7 a 35 day round instead of the normal 28 day period we had been doing. So with the concern of the platelets Dr Gowda asked that we go back to Michigan after round 8 to have her bone marrow checked for NB cells (the last one was done in December when we learned she had progression) and MDS and also have scans done. Round 8 started and last week (the first week of school) was the first week Emily hasn't had to get platelets. Platelets did drop a little bit this week while in MIchigan, but nothing needing transfusions.
Michigan was planned for September 12th and 13th to fit in clinic, meeting with Dr. Sholler, Bone Marrow Aspirates/Biopsy and scans. They normally don't do MIBG/CT Spects on Friday, but Emily's was scheduled for Friday and Dr. Sholler wasn't scheduled to be in Friday. We were concerned about not getting results, but was told several times they would make sure someone read the results to us before we left and before the weekend.
Emily had her bone marrow aspirate/biopsy done on Thursday (yesterday). We couldn't be more proud of her for handling it so well. She was so calm about the procedure and she was answering questions when they were asked and even smiled as she was getting her propophol (which isn't like Emily at all, because she hated getting the "white stuff" which is what she calls it). But she really handled it so well. She woke up from her sleepy medicine and wasn't grumpy like so many previous times before. However she was in a lot of pain, she cried that her back hurt pretty bad.

We did talk with Dr Sholler to go over the "what ifs" since she wouldn't be in on Friday so that when we received the results, we could make a decision on what we would do.

Emily had her MIBG/CT Spect scan this morning. And as always she did an amazing job. I can't tell you how proud we are of her and all that she has endured and continues to endure. She handles everything that she has to go through with just grace and always has a smile on her face. Although her back was still bothering her Emily was able to lay still for an hour and a half and not move. How can you not be proud of her. She rocks.

Well we came back to clinic after the scan and waited and waited. The nurse practioner came in and said the scans had been loaded, but no preliminary results were given in reference to the scans and she couldn't tell us if the scans looked better or worse or if there was any progression. Because Dr. Sholler wasn't there, there was no one there that could read the results to us to let us know where Emily stands. Needless to say we were not happy that nothing was reported to us. After scans we waited two hours to get nothing. We were told we could stay the weekend and meet with Dr. Sholler on Monday to get the results, but it wasn't something that we wanted to do when we both need to get home. So at this time we wait until Monday to know the outcome of the scans. I could go into what we really felt and how upset we were, but it won't change anything or give us the results. So we should have complete results by Monday sometime that we can update with.

We love this little girl with all our heart. She is handling everything so well, and we couldn't be more proud of her. We will continue to walk along with her on this journey and hold her hand and fight with her.

Please check back later for results.

Remember to hug and kiss your kids and tell them how much you love them.