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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Thursday, September 1, 2011

No News is Good News

No news is good news is the post I have for you all today.  But that is what it has been really since Emily has been home.  Monday marked 3 weeks exactly since Emily has been home. August 23rd, marked 8 months since we learned that Emily had/has neuroblastoma.

August 8th, Emily came home from the hospital from Stem Cell Transplant #1  and was more than happy to come home.  She did however come home on TPN and lipids (fats) by IV.  For 6 days she was on TPN for 18 hours and it seemed the only time we could get her to eat anything was when she was off the TPN and it was hard to coordinate the time to make sure that she would be on the TPN when I was home and be off the TPN when I would be home from work to take her off of it.  She was still getting sick on and off again while on the TPN.  After 6 days she was able to go from 18 hours to 12 hours, they will not let them immediately come off of TPN, because their body can go into withdrawals.  When she went to the 12 hours, we were able to do this at night and she would eat more during the day which was nice.  One night we had a failure with the pump that the Lipids was on, Emily had woke up at 2 AM complaining her stomach hurt and threw up everywhere, when I checked the pumps, she was given a full bag of lipids within a short period of time (which she never received a full bag and the lipids were always slower than the TPN) and this is what caused the tummy issues.  Thankfully she didn't have any problems and her electrolytes looked normal.  After 4 days of 12 hours, the doctors removed Emily from the TPN and Lipids as long as she continued to eat and drink.  Emily was visiting the clinic twice a week to check her counts, and electrolytes, and thankfully Emily never had to receive any blood transfusion while out of the BMT unit or Platelets.  I think the only thing we ever really noticed with Emily was she would be fine one minute and then the next her color would be very pale and she would have no energy whatsoever.  We give her orange juice and she would feel better and come around and have more energy.  

Emily will be admitted on September 7 for Round 2, Stem Cell Transplant.  We are nervous about this, however we are ready for this part to be over and done with.  We hope that she will go through this process easily and fight Emily style like she does. We do know that she can have sores again and much of the same things she went through before, but we are hopeful she will go through this easily and not endure as much pain as she did during the first transplant.

This past week, we have encountered a 5.9 earthquake with the epicenter being about 40 miles or less from us, Hurricane Irene with winds up to 55 miles an hour or so and many aftershocks from the earthquake.  We have been very thankful in each of these incidents that we have all been safe and our home is still safe and no problems.  The only problem we had from Hurricane Irene was the girls swingset was blown over and a couple of boards were broken, which we will have to replace. We are thinking of all of those who have been misplaces or are without power.  This past week, we also had family (my dad's sister's daughter) who just moved into her apartment with her new husband and two kids and did not have renters insurance on her apartment yet and there was an explosion and they lost everything in the fire including their vehicles.  Thankfully they were all safe, but again had nothing.  Doug and I wanted to give back and went through all the things that we had to give them some stuff to have and sent 2 boxes full of stuff for them. 
These past 3 weeks at home have been pretty busy and honestly I don't get on the computer all the much, so I apologize for not keeping you all up to date, however with working, coming home and taking care of the kids and everything else, life has been busy!   All of the girls are doing great though.  Jessie will be starting 4th grade, so we have been preparing for her to start school next Tuesday, and Brianna is just as full as life as she always has been.  Emily she is doing well, she is a fighter and that will never change.  She too is full of life and enjoying time at home with her family and camping when we can.  She does get winded quickly which we have noticed, but overall she is doing very well and we are very, very proud of her.

Hopefully I will update tomorrow after the consultation about Proton Radiation.  I'm exhausted.  I would love to update more, but really wanted to give you guys an update. 

Most of all, I just want to send out a huge thank you to all of the wonderful people out there who are so amazing and have been so amazing to us.  I can't thank you enough. Also, the address that we previously had before while in the hospital will be the same address this time.   

Remember it is September and today is Day 1 and it is important to make people aware of Childhood Cancer awareness month. Please share Emily's Journey as well as other's children's journey who are going through this journey of life they don't want to be going through.  It is important to understand that just because these children have cancer, doesn't mean anything is wrong with them, because they don't have hair doesn't mean anything is wrong with them.  Guess what they are children too, and most of these children lose a lot of their childhood because they are fighting for their lives and understand way to many things that most kids their age will never have to understand.  Teach your children that just because someone looks different that it doesn't mean something is wrong, all children should be loved and cared for the same.  Most importantly don't stare.  Sorry these are a few things that we have encountered just recently.  But I think these should be part of making people aware, because it is important for people to know and understand.  So, lets share about Childhood Cancer.

Love and kiss your kids.

Good night.


  1. Hopefully Emily will have a good progress ^_^ Thanks a lot about the update, Keep updating us please... God Bless Emily and all the people in the world , especially Children!! Hugs and kisses x x x

  2. We are praying for Emily and for your family. She is a beautiful little girl!

  3. I think of you all and pray for you often.

  4. Hi nikki from Australia here. What a journey you are on, Emily. We wish you all the best, our thoughts are with you and your family. Our baby is still fighting his cancer, I cherish every moment with him. Stay strong xxxx