Emilys 2nd Annual Band Aid Drive

Want to bring a smile to kids in the hospital?  Donate some bandaids to Emily's Journey for Emily's 2nd Annual Band Aid Drive: https://www.facebook.com/events/1429207783959021/

Spread this around and tell everyone.  Last year we collected 3000 boxes, this year we would like to collect over 4000.

When you post about this, please use the trend #emilysbandaiddrive








This is on the Event Page on Facebook....
We have started the "Emily's 2nd Annual Band Aid Drive" Last year we collected over 3000 boxes to donate to hospitals in need of band aids and this year we would like to match that number or exceed it! So, lets start sharing this event, share wtih your friends, family, work, coffee shop or anywhere that will let you share it. We want to bring a lot of smiles to the children fighting cancer. Thank you to SmileMakers for helping us again this year!!!!

Please ship to:
Hubbel Family
PO Box 5383
Midlothian, VA 23112

We hope you can help by bringing a smile to Emilys face by helping bring smiles to all the kids who use the band aids in the clinics, ER and Floor 7 at VCU and other hospitals that may need them!!!
www.emilyhubbel.com
www.facebook.com/emilysjourney

How is Emily?

It is the million dollar question that gets asked often and normally the first question we are asked.

Overall Emily is doing well. Round 10 was actually delayed by a week because her platelets were not recovering. They were at 19 and held the round off and gave her platelets. When she went the next week to start they were 23. Dr Gowda actually likes them at 30, but allowed her to start with platelets on board. Day 4-9 was her chemo, and she already started the not feeling hungry and very tired before the chemo started. So, once the chemo started it was even worse.  Dad tries to go everyday that he can to have lunch with her at school to make sure she eats.  This past week she was scheduled to go Friday to have her counts checked, but we noticed Wednesday night that she was bruising pretty bad and Thursday morning she had petechia on her arm. When counts came back, everything actually dropped. Her ANC although not completely low, but it was the lowest it has been in a while, so we are just keeping watch to make sure she doesn't get sick. Platelets were down to 13 which is the lowest that they have been in a long time. So, they gave her 3 units of platelets and want her back tomorrow to check counts and most likely getting platelets. So all weekend including Halloween night we have been very careful to make sure she doesn't hurt herself. She didn't make it long Halloween night though because she was so tired from a long day at clinic and the chemo she is on.  Thursday will be day 15 of avastin and complete this round. 

We just learned Friday that Emily will be heading to Michigan the week of November 11th for scans on Wednesday and Thursday. It makes it really hard to make any set plans when you don't hear in a real timely fashion that you have scans, but it's been what we have been used to for the last almost 3 years.  Scanxiety has already started, especially saying Dr Gowda feels that after 10 rounds of what Emily is currently on if there is no change, that this is really no longer working to "hopefully" clear her and only keeping her stable.  So we really aren't to sure what will be next for Emily.  I know that Dr Sholler has been pushing DFMO, but compassionate trial of DFMO (if she has disease she would not be eligible for the DFMO trial) would only keep Emily stable, and our hope is to get her clear. The fear of keeping disease always means there could be progression like she had last year. 

So, how is Emily? Emily is doing well and hanging in there.  Every day Emily fights and she is so strong, and continues with a smile on her face.  She just finished her first 9 weeks of 1st grade in school, and she is doing well with school. She has been having a lot of headaches lately, but we are thinking that is from the avastin. She still isn't able to be part of gym with her low platelets, so we have had to keep her out of gym.

Please continue to send your love and thoughts to Emily as she continues to fight this horrible disease.  As to be expected, Dad and I have good and bad days with still dealing with this disease and hearing all the horrible things that continue to happen around us. Some days are really good and other days, you just feel awful.  We will always live in fear, fear of this disease, what it is doing in her body and what is happening.  

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

  

                                    

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.

Cancer...And All That Comes With It

I tend to forget to update often, and I certainly apologize for not being better at updating.

Emily is doing well and for that we are very happy.  She just finished round 7 of the Avastin/Irenotecan/Temodor trial.  Each round is 28 days.  But she handles each round and chemo really well as long as we keep up with the Zofran.   The Friday before last she had clinic and she needed platelets since they were low, her hemoglobin had dropped also, but not to the threshold.  When she had Day 15 IV Avastin last Wednesday, her platelets and hemoglobin were still low, but thankfully she didn't need any blood products.  Thankfully this chemo doesn't cause her to lose hair,  she is actually having lots of hair growing in.  Its really exciting that she has hair and she is happy that she does too, she is gaining weight.  The weight is awesome, the only negative issues is that it means that medicine doses are increased.  But again Emily handles them pretty well.

Today we are in the clinic getting counts checked and thankfully her hemoglobin has started to come up, but her platelets are 23 so she will require a transfusion. She normally requires Benadryl, but because we have her Claritin with us, we can use that.  She also has to get a steroid called solu medrol which helps with breaking out issues she has had in the past.

Lets not forget that September is "childhood cancer awareness" month, and we are trying to get our Facebook likes up, we are hoping to 8000, so help us out... www.facebook.com/emilysjourney ....

Being that we are gearing up for awareness....Many don't realize the hardship, financial difficulties, stress, fear and worry that childhood cancer treatments that families go through. Families will do anything, travel anywhere to get their child what they need, the treatment they need... Not only is the diagnoses of cancer hard, but the treatment, the longevity of treatment and travel is hard on families, but even harder on the child. Emily is so tired of treatment, and going to the hospital now gets harder and harder, because she doesn't want to be there anymore.  Im sharing this because I think it is important to make people aware of all that Childhood Cancer and what families go through. A family that we follow, recently posted on facebook that her daughter was going through surgery soon and people wanted to know how they could help.  She posted about certain diapers that her daughter uses, and what other things would help them.  While we couldn't really help monetary wise, I emailed the company to see if they could help her.  The company emailed me back and would be able to send them a little something, which is really nice. The financial difficulties makes it hard sometimes for just all the normal things that many take for granted, like with just needing diapers, groceries or simple things and now with school coming up and needing school clothes and school supplies.  So with September coming up and it is "Childhood Cancer Awareness" month and also time when many start school ( Emily will be going to first grade and Jessie 6th grade), lets remember there is more to the awareness of childhood cancer.   I know for us travel is hard, heading to Michigan and the cost the comes a long with it, and while Emily does well, she still knows why we go to Michigan and what is involved in that. But the gas and needing to eat while being out of town, is costly. But remember many don't like to ask for help, we are one of those families, so we know there are many others out there that feel the same. People always ask how they can help, and there are many things that people can do to help others!!! Anyway, But many have so many other difficulties with many other things. Just trying to spread the awareness that comes a long with cancer.

We will continue to keep you updated on Emily and how she is doing! We are really proud of her. We have noticed more as of lately that she gets upset very easily and sometimes they Get out of control. We think a lot of that is treatment related.  Also treatment related, Emily is going to need a lot of dental work. From the chemo, most of her enamel is gone on her baby teeth, and mostly we are more worried about getting any kind of infections and causing fevers. So we are going to be working with hemoc and dental to schedule an appointment and make sure her platelets are up and also to get a dose of antibiotics before going so the bacteria won't cause infections. She has also made comments here and there lately that she feels like she can't hear things as well, hopefully it is nothing, but we will see.... haven't had a hearing test in a while. So we will probably need to do that sometime coming up. It sucks what chemo can do and what some of the long term effects that it can cause.

Remember to hug and kiss your children and tell them how much you love them!!!