Day 30 – August Already?

It is so hard to believe we have been here almost two months.  In some ways it seems like we have been here forever, in other ways time is flying by.  We certainly have our ups and downs, constantly being reminded exactly how long this journey truly is.  Wednesday was absolutely horrible, Kimbell dry heaved and threw up bile for hours – almost 24 to be exact.  When they did rounds K had 2 words “IV phenergan” which they finally gave her.  That stopped the cycle and they asked her if she really wanted to go to which there was no question, “yes” so at 5:30 we broke out of Unit 4!!  Even now that we have been out a few days it still seems odd.  When we got to the hotel Kimbell had a package waiting on her full of fun crazy wigs.  To celebrate she had us all wear a wig, mind you she wore “ePa’s wig”, ePa is pretty much bald so in other words K sported her bald head!  John, K, my mom, dad and I went outside and lit two chinese lanterns.  The wind caught the lanterns and took them towards UMN Children’s Hospital.

On Thursday we were at clinic bright and early for labs and to hear the news

Kimbell’s CD 15 cells are 100% engrafted!!!!!  While there is so much more this way amazing and sooooo exciting.  As Kimbell’s doctor said this is a sign of a successful transplant, share with your loved ones!  So we are   After clinic we pretty much slept the day away.

Friday we were at clinic again at the crack of dawn…  The good news today was that we found out CD3 is 92% engrafted   This is great as well.  Kimbell had to get IVIG (blood product) which is an all day affair.  Kimbell’s white count dropped significantly so she had to get GCSF today.  Also, most likely because of all the puking, her kidney function has decreased significantly (almost 50%) so she got extra fluids today.  We added another pill to her mix since her CSA numbers were a bit low.  I honestly don’t know how she takes all of these pills over and over again with very little trouble if any at all.  While K and I were at clinic John was busy packing up at the Residence Inn for our move to the Sheraton.  I’m praying we stay in the room we are in now because there is sooooo much more room.  These days we need lots of room.

Kimbell is still struggling from the side effects of all the chemo and the transplant.  Ironically one of the side effects make her skin beautiful, she has the most amazing tan that most of us could only dream of!  Crazy since she has spent the entire summer in the hospital in her room!!  We have been watching movies recently, tonight she did some crafts but most hours she is sound asleep trying to heal.  Even though she is out of the hospital she is extremely limited on where she can and can’t go.  She can go to the hospital.  She can’t go anywhere where there are multiple people, in other words she can’t go anywhere except for the hospital!  Kimbell doesn’t find the humor in that at all.

While we were in clinic today the nurse asked over and over “Kimbell what is your date of birth?” to which she responded 18 more days.  The nurse didn’t find it so cute but what the nurse doesn’t know is she spent her last birthday in/at the hospital and leading up to it did the exact same countdown to her birthday.  I don’t know if she is mentally preparing herself or what but I have a feeling she isn’t going to let anyone forget her birthday is coming!

This weekend unless she gets sick or somehow gets a fever we will not have to go to the hospital.  This will be the first time in months that she has been able to stay away from the hospital for 48 consecutive hours!

We hope you all have a wonderful weekend, hold your family extra tight, lots of hugs and kisses and enjoy time with each each other.  For our SCS friends, enjoy all the back to school festivities, wish we were there with you.

Please check out the address page for the updated mailing address.

Love,

Paige, Kimbell and John