Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

Emily's Journey's Most Recent Facebook Post

Monday, February 28, 2011

Monday, February 28, 2011

It was a long 28 hours or so at the hospital over the weekend and frustrating to see Emily have to go through the pain that she went through just to get the stem cell harvest.  I know that all this is in good for her to get better, but it is hard to see your child go through more pain that you ever have in your entire life. 

Friday because we were not prepared for staying at the hospital overnight (meaning no food, no clothes, no nothing)! Emily was crying in the fishbowl (the main room where they have the common room to check counts) and other patients are in there about wanting to go home.  Our nurse moved us to a private room.  I asked Dr. Gowda if we could go home at least to pick up our clothes, and her food and then come back.  I cried to Dr. Gowda about having to go through all this and Dr. Gowda even cried with me. He understood that no one there understands what parents go through because they themselves have never gone through this, and I can tell you it is very frustrating as a parent and then Dad and I have other kids at home that need care too!

So we headed home to pick up our stuff and then headed back to the PICU.  We have never been in the PICU and this is a place for children who really need to have more attention and more aid.  They placed Emily in the end room, which was great because she said they were only two rooms of 14 that have bathrooms.  Which was thankful, because Emily uses the bathroom, and not a diaper.  As soon as we got there, they were ready and waiting.  She had the line placed in her leg and she did well and this time she didn't get sick from the anesthesia, which I was very thankful for.  When she woke up, the nurse came back to get me in the waiting room and when I got back she was awake and she was starving since she didn't get to eat anything all day and all she wanted to do was to eat.  So, she ate some food that I had brought.   She cried that the leg hurt and that all she wanted to do was to go home.   She did get up to go to the bathroom and she said it hurt to walk on her leg, so she was on her tiptoes.  Dad and I are not into using a lot of medicine and most definitly the stronger ones, so we just used Tylenol just because we didn't want anything stronger, unless she really needed it.  And she did well with the Tylenol.  The link was pretty much like another hickman just shorter lines and there wasn't a bridge behind the line so that it wouldn't come out, which was one of the reasons for not being able to go home with it.  Dad came by to visit and Jessica stayed with Jessie and Brianna at home since Brianna was sick and she really didn't need to be around the hospital. Thanks Jessica for last minute.  Dad brought Emily some fruit (organic still and it is going very well, and even Dad and I are losing weight.) and other food so that Emily could eat.  And he was going to get up early Saturday morning to make steak and eggs for us.  Yes Emily loves steak, which was quite interesting to us.  No hormone and antibiotics into the meats, are so good and taste so much better, and even the kids love the meats more now.

Emily did well over night with it, and all the extra stuff that PICU does that we were not used to.  Saturday morning Emily and I woke up at 4 AM when the nurse came in to take her labs to get her counts since Friday night she had to get another dose of double dose of GCSF and then a triple dose about 730AM, so they wanted to see where she was before getting the triple dose.   So I let her eat a cereal bar because she was hungry.  The nurses said she should not have eaten in case she needed anesthesia for the harvesting, since it would take about 3 to 4 hours.  I explained she would not need it, since I would be laying in the bed with her, and that she would be fine.  They were adament that she would need it and I was adament that she would not.  Her counts came back and her WBC was up to 18.6 and she was ready for harvesting.  I was nervous that they would not get the 10 million that they need (enough to do two stem cell harvests) and she would have to stay another night.  She stilled cried overnight and even in the morning!  She would get a bit antsy and I would explain that if she didn't calm down, they would have to give her medicine and that would mean she couldn't eat when dad got there.   

Harvesting Machine
The only part she had a hard time with is them placing the lines from the machine to her line that they put in the night before because she said it hurt.  But once it got connected she was fine.   She did great during the process, she had one moment of her stomach hurting and she said her stomach hurt, so they upped her fluids ( her blood pressure was a little low as well) and then she was fine, she said she felt better.  The lady from BMT said she should have eaten a full breakfast, I explained to her they wouldn't let her because they thought she would need the anesthesia.  1230 PM, they were done and they took the stem cells to be counted and then frozen.

We got notification about 3PM that they had gotten the amount that they needed, but that her Platelets were low.  So she needed to have a platelet transfusion before they could remove the line because without the platelets it would bleed more than usual.  So she got the transfusion, got up for the bathroom and they removed it.  The worst part of removing it was the dressing that was on it.   

I was getting her dressed for home, because she was ready and noticed her dressing needed to be changed because it was having air get into it, so she had to have another one.  She did well with it again, only once cried. 

Dad went home and got the girls with Jessica to come back to pick us up.  But 530 PM she was ready to be back home.  Yeah. Dr. Gowda said since her counts were high to take advantage and let her get out some.  So we went home to take one of the cars home and then headed out to Whole Foods to get groceries and to eat there. 

More update later.  We need to get ready for a day of scans at the hospital.  


  1. You are in my thoughts and prayers! I cannot imagine as a parent what you are going through!!! Hugs!

  2. You've got one amazing strong little girl there :)

  3. Sending healing vibes and prayers. <3

  4. praying for your family and your little girl!!

  5. Emily is so brave!!! I am sending you all my love and strength. I can not imagine what you are going through but know you are in the hearts so many people! Don't hesitate to reach out if you need something.

  6. You are definately in our prayers!! It not only takes one strong little girl, but 2 amazing parents to help her get through all of this. With all of your strength and love she can pull through anything. Have faith and if you need anything at all please call me and I will be there in no time!! Regina