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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Saturday, August 3, 2013

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!!!