Saturday, April 28, 2012

Visitors!

 A small pile of hair.
 Great Grandma Braisted who acts like she's 65 : )
 These two were literally beaming when they saw each other!
 GraceyAnna was pulling Karagen's hair out by the handfuls.
High tech daddy and Gracey-she thought Mommy's cell phone was a great chew toy *smile*

Stem Cell Harvest

Waiting to go in for the surgery to place the line in her groin (top right leg)

 Waking up from anesthesia.
 Her face is very swollen from the high dose steroid she is on.
 In the PICU waiting for the machine to start.  She was so hungry and her legs hurt.
 The Stem Cell Harvest Machine.
 Karagen was given a sedative to help her relax, she slept the whole time.  She had been up many times throughout the night before going to the bathroom.

Her stem cells, Liquid Gold : )

Shaving Her Hair






Karagen told GraceyAnna that they would be bald buddies : )

When she first saw herself in the mirror she was very upset, but after a long hug and a cry together she was ok.    Jonathan and I told her that she was beautiful.  I  told Karagen she gets more beautiful everyday!

Friday, April 27, 2012

National Rehab Hospital

 Arrived at National Rehab Hospital Monday, April 23, 2012
 Karagen had a lot of fun at this hospital, the schedule is busy and fun.  Here she is working on a bag, she put "Take one day at a time" on it.


Back at Children's on Wednesday evening.  This shirt is from Steven Curtis Chapman-the song that it represents moves me to tears when I think of Karagen.

Transfer to National Rehab Hospital

Monday, April, 23, 2012
 Waiting for the ambulance team to come
 On the stretcher

 Getting in the ambulance
She enjoyed her first ambulance ride
Waiting to be transported.  Karagen has learned a lot of patience, so has Mommy.

Wednesday, April 25, 2012

Family Visit/ Hospital Pictures

   Saturday, April 21  Grammy borrowed The wheel chair : )
Mom Roberts traveled from Binghamton, New York all the way to Henderson Maryland, all by herself, a 5 hour trip!  We were so proud of her!
 Sunday, April 22- cousins Aubrey and Austin



Left to right- Karagen, Aubrey, Austin, Andrew and Kelly.
They came all the way from Indiana to see Karagen.

Sunday, April 22, 2012

Getting Through

   Our daughter has cancer and our world has been turned upside down.   It's the small things these days that mean the most-  It doesn't take much to make me happy, here are a few of the things that have made life a little easier for us, these are not listed in order of importance because I am an unorganized thinker....just ask my sister *smile.


1.  Big girl pull ups-they make the constant trips to the toilet more bearable and the accidents easier to clean up.


2.  Hugs- From anyone...even strangers


3.  Visitors- Whether at the hospital or home, people visiting us helps us to feel supported and cared for.


4. Listening Ears- Even if I've already said it, or I cry about it again, an understanding ear, makes a HUGE difference.


5. Encouraging Words-  Said to us, or Karagen or the children at home, words of affirmation go a long way to keeping us upbeat.


6.  Coffee-  Go ahead, laugh. : )  I have a hard time getting awake in the mornings without coffee, and love the comfort of this warm, cozy beverage.


7. Crying out to God (literally)-  He is never busy and His presence lifting me up and showing me moment by moment to keep my eyes on Him.


8.  Pray-ers-  All of those special people who think of us throughout the day and stop to pray....for us....for Karagen.  God HEARS!  


9. Faith and Belief- That God sees everything that is happening, that He is an Omnipotent and Loving FATHER who already knows the end and every little thing in between.


10. Smiles-From Karagen, they literally light up my whole day!

April 21, 2012 Hospital Update

It is hard to believe Karagen has been in the hospital 18 days! This time has both crept by and flown by. Karagen is doing much better in relation to her energy levels. Her steroid dose has been increased because she has had trouble not being able to feel when she has to go to the bathroom. We purchased some big girl pull ups because the diapers here are very inconvenient and the pull ups are much easier.
On Wednesday Karagen and I had a free photo shoot, we will be given several portraits from the session as well as a CD with all the poses on it. I was thankful to have some pictures taken while she still has hair.
Great Grandma Braisted spent Wednesday night with Karagen and that evening Jonathan and I went to church together, we also ran errands Thursday while Grandma B stayed with her. Jonathan preached a wonderfully honest message that seemed to resonate with everyone-his passage was from Job. This week has been easier on everyone in the sense that we have not received any further bad news and we are adjusting to running back and forth to the hospital. Karagen has stayed busy with her therapies and the Art room and the Play room. She had a fresh supply of packages which helped her cope with her boredom and homesickness. Thank you everyone!
Karagen was excepted to the National Rehab Hospital and is scheduled to be transferred there Monday. She will have to work very hard there to get strong. Sometime during this coming week she will have another MRI to see if chemo had any effect on her tumors. A special request we have is that Karagen will be able to have her stem cells harvested, there is a lot of concern that the stem cell harvest doctor will be unavailable when Karagen's counts are right for the harvest. This too is supposed to take place this coming week. During the harvesting of her stem cells she will be in the Intensive Care Unit again.
We are so grateful for our family and friends who have supported us, right now every little thing counts, from laundry and dishes washed and diapers changed at home to Visitors and cards at the hospital, your love and support are what is getting us through. Different ones have taken time out of their lives to help us, some of you have brought meals, done our laundry, sent cards/packages, watched our children, mowed our grass, the list goes on and on-literally. Many have sent in money and various gift cards which has lifted the financial load off our shoulders. We can't say thank you in words, but our hearts are full of the love everyone has poured out on us-and in the midst of the hardest time in our lives-we are blessed-because of our family and friends!

Wednesday, April 18, 2012

So....I Fight

It comes in and invades my life- so I fight.


Threatening to steal more than my daughters life -so I fight.


Creeping in to bring distance and disconnection into our entire family structure- so I fight.


I could lose it all- so I fight.


In the silence- I fight.


In all the uncertainty, the questioning- I fight.


In the darkness, amidst the roaring in my head- I fight.


I fight- to be  strong, to have courage, to make it work, this new way of life with cancer on board.  To be for my husband, to be for my daughter, to be for my children, to be for all those who need me to be- I fight. I fight to stay sweet, to remain positive, to not snap at the children, to be the mother, the wife, the Christian...... God wants me to be.  I fight to be.  I fight.

Tuesday, April 17, 2012

More Hospital Pictures

 Saturday, April 14

Visit Tuesday April 17, 2012

Wagon ride- Saturday April 14

Hospital Pictures

Monday, April 16, 2012
Karagen received her first batch of packages and letters.  They helped her feel better and she enjoyed them so much!



Hospital Pictures

Tuesday, April 17, 2012

 She just adores her baby sister!
 4/17 casts to correct her feet. She has to wear these 4 hours on and 4 off.
 Great Grandma Braisted, GraceyAnna and Karagen
 Tuesday 4/17  New packages were delivered.
Tuesday, April 17, 2012 all tired out from the chemo

Friday, April 13, 2012

More Pictures

 Barbies to play with.  Aunt Gloria and Karagen Monday 4/9
 Monday after we found out her cancer was Medulloblastoma.
 We love you so much Sweetie!

 Waiting for the shower cap to clean her hair.
Monday 4/9