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, May 14, 2011

Friday, May 13, 2011

Its been a while since my last update here, but just a lot happening and just trying to keep up with day to day!

Doug and I used to feel that we were both normal people, normal parents, normal laid back people that were leading normal lives. We, Doug and Shannon, met and we fell in love with each other and decided to get married, like normal people do and have children together like normal people do.  Both Emily and Brianna were early (Emily being 5 weeks early and Brianna being 6 weeks early), but both were very healthy and loving girls.   People who see us walking down the street, see us out in the world anywhere, stop by the house, we appear to be just like normal people that lead normal lives, but until you take a walk inside of our lives, our minds, our world... or unless you know us personally, you know the Hubbel House doesn’t live a normal life.  Back on December 23, 2010, that day changed our lives forever from being normal.   We aren’t happy with what we have been handed, but we will deal with it the best way we know how and as well as to be expected.  We are overwhelmed with all that is coming our way and what gets thrown at us on a day to day basis, we are stressed with knowing what we know, we are scared of anything and everything that could happen, will happen and may happen.  We are both hurting terribly and worried sick about what our daughter has had to endure and what she has coming up to deal with.   Everyday that I am able to work, I worry that my phone will rang and that Emily will have a fever and we will have to go and get her to take her to this hospital.  Sorry for the little vent here, but Doug and I both are having a very hard time with this and just trying to grasp what is going on in our lives and what Emily's sisters have to deal and overall what Emily has to deal with. We just wish that we could go back to our normal life that we once had and enjoy time non cancer. I know that it will never be that way again, because we will worry for the rest of our lives, we will be anal about germs and who comes around our children and our house, its just something that is now part of us that now we have to learn to deal with.  We read along with so many journey's of other families who are also dealing with this and feel the ups and downs that they do, and its just scary to know how horrible this disease is.  Its wrong that 4 that we know of have lost their lives to this disease within the last 4 weeks, I'm sorry but I can't understand why a child has to be put through that, it isn't fair and isn't fair that a parent has to lose their child.  I can't sit here and lie and say that Doug and I have never thought about that, because again I would be lying, it scares the crap out of us, but it is reality of this disease, however we know that Emily is strong and she will beat this.  She will beat them and show them who wears the pants in this house and that she can win. Doug and I both say, we HATE CANCER.  Hate is a strong word, and hate isn't a word that we use in this house, but we use it when it comes to cancer.  We honestly don't even like to say cancer, because those words, just seem ... seem ...  a word that I can't put into a sentence...

This week at home with Emily has been nice to be at home and no interruptions of a fever (knock on wood) so far to take her back in the hospital.   Emily was feeling pretty lousy upon getting home, still exhausted and sleeping most of the day and getting up a few times to get sick, however nothing like round 3.  Mothers Day she did have a few more ups but still overall was exhausted, by Monday she was somewhat getting back to herself except for the eating and drinking.  We had her on fluids over the weekend and requested to have them a few more days because of her not eating and drinking a lot.  By Thursday we had a meeting with Dr. Goddar and after the meeting, her energy had diminished big time and all she wanted to do was to sleep again.  All day Friday she slept and was up here and there.  We did ask for fluids again for 3 days because she is still not eating and just seeing her exhausted, we know she needs to eat to get some energy and gain some weight. Even the babysitter can see that she needs to gain some weight, but we are trying. 

Tonight we got the movie "Never Say Never" with Justin Bieber and was hopeful that Emily would have enough energy to watch it and maybe even have some popcorn.  After Brianna went down to bed, Emily was asleep and I went to get her and bring her in the kitchen to start her fluids for the night and she said, "I want popcorn" and was ready to watch Justin Bieber.  She tried to stay up for the most of it, and it was great to see her watch it and even sing some in a very light tone.

We got word from CHOP that they could schedule surgery on Monday, May 16th, but we were not so sure that she would make those counts being that it would only be a week off from Round 5 chemo.  We knew would we find out when we took her in on Thursday to meet with Goddar about Stem Cell Transplant talk. So we tentatively had then put in on the schedule, so we could leave over the weekend.  However, Emily's counts had other plans, which is what we thought would happen, that they would be too low to move forward.   As we had guessed, they were too low to move forward to leave over the weekend.   Dr. Gowda felt that her counts may even bottom out more over the weekend.  So, now we sit and wait and see what happens when we take her back  on Monday to have her counts checked. 

Since her counts are still low, we lay low and enjoy time together as a family and stay away from the germs...just to help you all see what we try to keep Emily away from, here are some precautions:
Steps to help prevent infection when neutropenic (low counts):
  • Hand washing, hand washing, hand washing! This includes the patient and those around the patient.
  • Avoid large crowds where you may come into contact with germs, such as shopping malls, church, or public transportation. If need be, go at off peak hours to avoid the crowds.
  • Avoid anyone who is sick (including colds), including other people in their household are sick.
  • Avoid children or adults who have recently received vaccines.
  • If you have a central catheter (PICC, Port, Hickman), use caution to keep it clean and dry. Check the area for redness or tenderness (soreness) daily.
  • Follow an oral care regimen.
  • Wear sunscreen (SPF 15 or higher) to prevent sunburn.
  • Use only electric razors to prevent cuts.
  • Use caution to avoid any cuts or injuries. (avoid contact sports, wear gloves for household chores)
  • Do not use rectal suppositories.
  • Do not eat raw or fresh vegetables
  • Stay away from constructions sites
  • Stay clear of flowers which have fungus
  • Take a bath daily to rid of germs on your body
  • (There are many more, but here are just a major few)

Well, I'm exhausted, so love to you all, kiss your kids, hold them tight and tell them you love them.  Remember don't complain about the small things, enjoy life because things can change so easily!  

Good Night.


  1. Praying that Emily's counts, energy and spirit comes up. Thank you for taking the time to blog. I think about your family daily.

  2. Reading this brings tears to my eyes. What you wrote in the first part of this is exactly how I feel: we used to be "normal", but those days are gone forever. There will always be worry, countless doctor appointments, and things that we wouldn't have to deal with if it wasn't for this disease. I HATE CANCER too!

    I hope that your family and Emily have some wonderful time together, and I will keep thinking of her in the days leading to her surgery!

    Jacki Nielsen
    (or Allie's mom)