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

Friday, February 18, 2011

Friday, February 18, 2011

Nanny, Brianna, Justin Bieber, Mommy and Emily
Good morning!  I guess it has been since Monday since I posted and I have to say I'm sorry!  Its been a long week and just trying to stay awake at night to post is hard.  Its funny, maybe not, at home, I can go right to sleep, but at the hospital, I can't sleep.  I think a lot of it has to do with just making sure that Emily is ok and checking on the nurses who are coming in and out during the night.

Monday Emily had a great day! Daddy brought two special boxes from the house that were left there, one from Aunt Lynn and Brittany and then another from Tiara's and Trucks.  Emily had a blast opening the boxes and seeing what was in them.   There was one thing in the box from Aunt Lynn and Brittany that Emily just had a blast with was the life size Justin Bieber. As you can see we took a picture. She got a beautiful purse that had her name on it with a crayon roll set that Emily loved too!

The doctor came in and told us that Emily had an innocent heart murmur.  She had never had one before.  He explained that it wasn't a bad that and that a lot of children get them when they are on chemo.  However, that was the first time I had ever heard of that.  It was and still is a bit concerning to me.  However during this whole week of chemo, even the day she started last Friday and was getting hydrated and she had a low blood pressure.  Which was abnormal for Emily and was a bit concerning to both Doug and I.  However when checking her blood pressure, it was low, her heart rate was still normal and wasn't working harder, so they were not as concerned.  So when the doctor said she had a bit of a heart murmur and it had to do with the hemoglobin, the nurse said it all made since now why her blood pressure was normal.  We were told that it would go away after chemo is done, I hope that is the case.

Nanny came to stay the night at the hospital with Emily on Monday night just to enjoy some time with her.  And Emily enjoyed that.  Nanny was able to give her a bath and play with Emily.  I don't think Nanny was used to staying up late at night. Emily also tends to stay up later when we are at the hospital also.

Tuesday was a day that Emily knew she got to go home, but it was after her chemo and after she had a little bit more of hydration.  her last chemo was done about 330.  But she had to have hydration and a dressing change before we heading home. She still hates these more anyone can imagine.  You can't even talk about it or she will start screaming and crying.  I can only imagine, she is only 3 and having to go through so much for a 3 year old and honestly it isn't fair that she has to endure this much.  Seriously.  Anyway, Emily was rather tired on Tuesday and pretty much just played with nanny and then rest of the day she just laid around wanting to go home.  It wasn't coming fast enough.  On top of that mommy left her light on in her car on Saturday in the parking deck and drained the battery, so we had to wait for Doug to come and help us.  He got there the same time we were walking down to put the stuff in the car around 630 and thought once the car was starting we would be good to go home.  However with the way the parking is, Doug couldn't get his truck by my car and we had to go and get a cordless one.  Well it was dead and needed to be charged to charge my battery.  It was just one thing after another.  We get it started get out of the deck and she died again!  This time it was harder to get started again and the car needed to be running for a bit of time to hold the charge.  Finally about 8 or so (time is very distant) we got it running and Doug drove it home.  He was frustrated, sorry honey!.  I felt so bad though Brianna was at the sitters house and the sitter was exhausted and wanted to go to bed, since is normally in bed early and was ready to go bed and we still were not there to get her.  I called my friend, Kira and she went to get her.  Thanks Kira, you are a lifesaver. Finally we got home a little bit after 9PM.  Emily was exhausted and hungry, nobody had eaten and all she wanted to do was eat and go home.

Please say a prayer for our friends, Jerusha and Moses whom their daughter has the same thing as Emily and is undergoing her stem cell transplant.  My heart has been with them and praying for them.  Stop by and leave them some prayers if you have a moment. 
Again sorry the delay in posting, however it has just been busy.  Since we have been home, we have been giving her every 24 hours her GCSF (I think that is right) IV which is supposed to help get her counts back up so that she can get her Stem Cell Harvest done.  Monday her counts were 3.3 and Tuesday they were 2.5.  So a big jump in counts within one day.  We had back today to see where she is with her counts.  I just hope that they don't get as low as they were before, because I hated them being that low.

Girlfriends of Emily's at CCDC we are looking to have the party at Diva's and Dudes on March 5 from 2-4...this is tentative that her counts are up and she is doing well!  If you are interested in bringing your daughter, please email me at Shannonh@couponmommyof3.com so I can give you details.  Emily is very excited and hopes that we can have it next week.

Well, off to wake the princess so we leave at 830 to head downtown to the clinic.  Hope you guys have a great Friday and please continue to say a prayer for Little Emily and all those others. Hold your kids tightly and love them with all your hearts. 

Just another Thank you very much to all of those wonderful people out there who have been such a blessing to us and doing all the wonderful things that you have been doing.  Doug and I can't express in words easily how amazing you all have been.  Thank you again, over and over again!

No comments:

Post a Comment