Friday, February 17, 2012

Reality Ahead...You've Been Warned!

Up until a couple days ago, things were going fairly well for Emilie.  She tolerated the radiation and chemo treatments well and her appetite still existed.  The monster named mucositis arrived and has been causing havoc since.  Mucositis is the painful inflammation and ulceration of the mucous membranes that line the digestive tract, starting at the mouth all the way to the "bum".  It's an adverse effect of radiation and chemo.  Ugh! It is so painful for Emilie that she is not eating, drinking or talking.  She is now taking nutrition via IV as well as all her meds.  The pain is controlled with morphine, that was "as needed" yesterday and changed to "round the clock" today.  Emilie is super tough and tried to work through the pain, but it was just too much.  She is very upset about being "fed" via IV and asked to have the nutrition bags covered with a pillow case.  It's probably not a good idea to send Emilie pictures of yummy food at this point.  Mucositis is normal and expected to last another 1-2 weeks.  We are taking each day as it comes.  Other than the mucositis, today was a good day as far as Emilie's lab numbers.

Nicolas' cells are setting up the bone marrow factory and we will be seeing results of Emilie's cell recovery in about 2-3 weeks.  Because she has had so much previous chemo, count recovery may take a bit longer, but because Nicolas was a perfect match, it may take less time for count recovery.

Emilie has endured so much pain, disappointment and sadness; things that no child should ever have to deal with.  Cancer affects the whole family.  The boys and Nana miss Emilie; Emilie misses the boys and Nana.  The boys and Nana miss me; I miss them.  We all just miss "normal", but we all have choices too!  I am choosing joy and gratitude.  Even with yuckiness all around us, there is always something to be joyful and grateful about.  We're keeping our hands up on our roller coaster.


Auntie Vicki said...

my hands are up while on the roller coaster with you! Loving you.

Martha said...

You REALLY write well, Patti. Although I am not a roller coster fan (or the teacups for that matter), I, too, am with you. Blessings and prayers during this ride.

Mary McConnell said...

So good to hear from you Patti! I know you all have been busy but thanks so much for taking a few minutes to catch us up! So many people have been asking me about Emilie! I will update the info in my email and team in training page. Hang in there!

Mrs. Mits said...

The Mits family is thinking of you Emilie and hoping you feel better soon. It sounds like no fun and can't wait to see you! I keep hearing a Selina Gomez song on the radio and think oh Emilie probably loves this song. Your hat is super cute!

Eva said...

I'm glad that you are updating more frequently... I love to read about you guys and then pray for you as needed. I'm praying for Emilie's stomach pains to be short lived and for her counts to come up quickly!