This is only the beginning...

I know it has been more than a week since my last post, but I have been super busy!  Monday (my first day) was mainly spent going over paperwork, policies, meeting the team, etc.  Tuesday an ice storm hit the area and I was unable to make it into Durham.  Wednesday I shadowed a CLS in the pre-op area, and later on in the pediatric emergency department.  Thursday morning I spent time in the PCICU & PICU, and spent the rest of my afternoon in the PBMT (pediatric bone marrow transplant) unit.  Before I go on, I must tell you that Thursday was the most amazing day I have ever experienced in all of my child life studies/career.  More specifically, the time I spent in the PBMT was truly a reminder to me of why I am pursuing this career.

You see, Duke is pretty much the number one hospital in the U.S., and across many nations for bone marrow transplants and coinciding treatment.  When a patient is scheduled to have a bone marrow transplant (either from their own healthy marrow, donor marrow, or cord blood) the lives of his/her family literally turn upside down.  Since a bone marrow transplant and chemo treatments make the patient's immune system virtually disappear, they have to commit to staying on the PBMT unit for a number of months in order to avoid infection/rejection issues.  Duke requires that one caregiver stay in the room with the patient 24/7 and that another caregiver live in the Durham area in order to provide an alternate support in the case that one wants to leave the unit for a hair cut, doctor appointment, or sickness.  If any member of the patient's family is sick, he/she is not allowed on the unit until completely cleared by a physician.  The PBMT unit literally consists of 16 beds on two hallways, a play/game room, a parent room, work-out room, and nursing station.  Patients on this unit may not step outside of it for weeks at a time. 

It is not until the patient's body accepts a certain number of cells that he/she is allowed off of the unit and even allowed to go outpatient.  Day 100 is generally a mile-marker for this.  After taking in all of this information, I was able to accompany the CLS in the playroom for a game of bingo with many of the patients and their siblings.  I was simply in awe of the feeling of support and comradery amongst the patients.  I remember one particular young guy, who shouted for his mom saying "mommy, mommy...guess what...I ate a whole plate of spaghetti!  I love spaghetti!"  I was so close to tears when I saw the smile on his face.  Eating is a HUGE deal for these patients because (as a result of chemo) canker sores form inside of their mouths, gums, and down their esophagus, making it entirely too painful to eat.  So this little guy's statement to his mom meant so much for me to hear.  It really brought me back to the reality that not one of us has anything valid to complain about.  Children, teenagers, and even infants in the PBMT are fighting their own bodies to live...even as I type this now I cannot help but tear up.  I continued to watch everyone around the table playing bingo and realized that age, nationality, skin color, all of these things make no difference to these patients and their families.  They are all one community fighting these battles together.

Even once these patients are allowed to go outpatient, they must live within 15 minutes of the hospital and visit the clinic every day for testing.  During this time period they are not allowed to be in public places (other than the hospital)...this means no restaurants, malls, movie theaters, etc.  I say all this to remind each of you to be thankful for your health and the health of your family.  And remember to support those you come to know that are fighting cancer and will be facing a bone marrow transplant. 

On Friday morning I spent more time on the PBMT unit and then transitioned back to PICU/PCICU.  I experienced so much this week that I can hardly express all of it in this posting.  Tomorrow I will begin full time for the next seven weeks on an inpatient unit. I would like to end each post with lyrics to a song that has touched my life in the past week, and I have chosen "Held" by Natalie Grant.  Please read these words...

Two months is too little, they let him go
They had no sudden healing
To think that providence
Would take a child from his mother

While she prays, is appalling

Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us

Who have died to live, it's unfair
This is what it means to be held
How it feels when the sacred is torn from your life
And you survive

This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive

This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

If hope if born of suffering
If this is only the beginning
Can we not wait for one hour
Watching for our Savior

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive

This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held