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. 

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!!!

Scans Update

Scans are completed and Emily is stable. We are happy there is no progression but would love to have heard something different but it's stable. Some spots are decreased from Sholler's view but all of her spots are still there.

It was a long day at the hospital and we got back in around 6. The best of this all is Emily looks wonderful. She is 33 pounds and she has lots of hair. We move forward.

We start the long drive home tomorrow taking a break tomorrow night and will be home Saturday sometime.

We come home to start Round 5 of the Avastin trial. Doing two more rounds and then back to Michigan for scans. Depending on how things look after round 6, we may put Emily back on the DFMO trial. At least that is what Dr Sholler suggests. We are always looking.

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

An Outsider's View

Entry written by Sue George:

I would like to start this post off by saying how truly honored I am that Shannon and Doug have asked me to write on this CB site and to be an administrator on Emily’s FB page. When Shannon asked me to write an entry she said it would be good to have an ‘outsider’s view’. Unfortunately I can’t write as an ‘outsider’, I consider them my family, I love them all as my family and I will stand by them always, as my family.

My heart breaks as I watch Emily battle this monster known as Neuroblastoma. She has a heart of gold; she is such a loving young lady and for her to be dealt this hand stinks! When I sit and look at her in that big hospital bed hooked up to bags and bags of POISON it takes all my strength to not sit in tears. After all, Emily doesn’t cry … she FIGHTS! She lets the nurses take vitals, answers every doctor’s question, and corrects them when they try to take her temperature by mouth! She even shows them where the next spot is for her shot… Emily is nothing short of AMAZING.

This CH14.18 (antibody treatment) causes pain, pain that no 5 year old should have to experience. The doctors minimize her pain with Morphine over and over again and she FIGHTS! The Morphine causes her to break out so they hit her with Benadryl and she FIGHTS! The IL-2 causes fevers and achiness; they give her Tylenol and she FIGHTS! This will go on for 6 cycles, 6 months of torture, IV pokes, platelet transfusions, hospital stays, GM-CSF shots but she keeps on fighting!

Emily has touched the lives of so many. Not only are others inspired to fight their own battles, they are often the recipient of the Hubbels’ encouraging words and care packages. If they meet Emily in person, they are awarded her million dollar smile! That can make anyone feel better in that moment, no matter what life has dealt to them.

This ‘outsider’ has been taught to look at life differently, to appreciate the little things, and to open my heart and allow room for a new family. Emily is a fighter, she is my ‘bestest’ friend, and she will be victorious in beating this monster.