Saturday, January 16, 2010

Grace's wicked sense of humor

I am following an amazingly eloquent entry with this, but I thought you would all get a kick out of Grace and know that even though she is confined to an I.V. tower and stuck in the hospital she is still herself. 

She was very sad tonight to tell her mom and siblings goodnight as they left to go home. 

Being in the hospital or any place for a certain number of days requires you to start being creative to pass the time. Video games, books , movies, drawing, coloring, and many other things can begin to be too played out unless you sprinkle something random in with them.

I got the opportunity to spend the night with Grace tonight. As we were thinking of things to do I thought it would be fun to have a tea party and use the individually wrapped condiments: graham crackers, jam, peanut butter, and saltines that are in the kitchen area to make small sandwiches. As a joke I also brought in packets of ketchup, mustard and mayo and set them on her tray. Now at this time Grace had also ordered up a fruit tray heavy on the grapes and strawberries and a hotfudge-sunday which were making their way up to our room from the cafeteria. As soon as I set the condiments down  I could see Grace's eyes twinkle. She said "dad, how about I make a sandwich while you close your eyes and then you take a bite while your eyes are still closed and you can tell me which one you like the most." Of course I knew where this was going, but I played along. I made sure to keep my eyes closed the entire time and when she told me to open my mouth and take a bite I did. Her laugh could be heard four units away as she yelled that is so gross! You just ate a graham cracker, strawberry, mayo, mustard, ketchup sandwich! Then as quick as she could she said she was done making sandwiches, knowing I wanted revenge, and decided to draw.

I just want to thank all of you for your thoughts, prayers, offers, and help. We are so grateful to be surrounded by amazing selfless individuals.

Friday, January 15, 2010

Hospital updates

We've had many people call or email with their love and concern about Grace, and that means so much to us! I'm so sorry we're slow to post, but life's  a bit of a whirlwind right now.  So, to fill you in on Grace's status...a new post.  

Grace got a fever on Tuesday at midnight.  When a child is going through Cancer treatment, any fever requires immediate care.  So, the doctors sent us to the ER.  By 5 am they admitted Grace because she was in a neutropenic state (meaning she had no immunities to protect her).  They started her on a dose of antibiotics and ran a course of tests to determine the cause of her fevers.  Her H1N1 came back negative and her blood smears we're clean of viruses.  So, we are unsure of what caused her fever, but we do know her last spinal tap and chemo wiped out her immune system.  It was no wonder she kept stating that she felt awful all last week.  Grace's Neutrophils ( or infection fighting white cells) are consistently going down rather than up, so she may be here for a while.  But, she's eating her fair share of bacon  and sausage to perk them up again!  Her liver enzymes are also not functioning very well, but the doctors aren't too alarmed about it-and say it's just the way her body's way of responding to chemotherapy.  Grace is missing home, but living the good life at the hospital.  JR ensured that she had every art project possible as well as fun snacks, nail polish kits, and anything fun to pass the time.  He is such an incredible dad.  Grace positively lights up when JR is around.  Grace is being typical Grace.  She is joyful, positive, and even when she feels crummy she tries to put on a brave face.  Tanner has been hit hard by this experience.  The minute he stepped onto the tenth floor here, he said, "eww...I remember the smell of this place."  He patiently and lovingly wheeled his sisters around in a wagon around the hallways when Grace was allowed out of isolation (however she's back in it now so other kids won't get her more sick). As he wheeled them he got too much of a glimpse into each child's room.  Children his age, babies, you name the age-he saw too many children who should be well and are not. He fell apart when he got home after visiting Grace.  Though in the long run he'll be better for the experience, he's grown up too fast from it.  Eva is sweet spirited and happy through our chaos and I'm proud of her.  For a two year old she really is patient through it, and she trusts us so much, it amazes me.  I keep expecting her to throw a fit because of this whole shift in her little world, but she happily dances along.  And, Ben...cute little baby Ben.  My heart breaks when I can't be with my nursing baby.  It feels so unnatural.  It feels unnatural to have this separation from one another.  If I'm at the hospital with Grace, my heart aches for my other children and JR.  If I'm at home with the kids, I look around at Grace's school uniform carefully laid out where she would have worn it if not in the hospital or her bed without the warmth of her tiny body and I can't stand it.  Being in the hospital again stirs up forgotten, or rather, suppressed emotions that have been tucked away for later healing.  I'm sitting here tonight, staring at Grace with her lights out mask over her eyes, tubes connected to her, and listening to a faint cry from a child down the hall.  I just keep thinking, we're so blessed that this is our first trip back here, since the first trip here on Aug. 13 of 2008.  I keep thinking that this whole world of Cancer is very sobering indeed.  I keep thinking that if, by God's good graces, Grace is allowed to live a long life she can be a mother someday.  I hope then, she'll know  just how much I love her, and JR loves her.  

Wednesday, January 13, 2010

Grace is back in the hospital!

After waking up with a fever last night, she was admitted back to Doernbechers due to her infection and her very low white blood cell count. We will be here a couple of days until her cultures grow and the doctors can find the right antibiotics, she is fever free for 24 hours, and her white blood cells increase a ton. We will let you know when more develops.

Sunday, January 10, 2010