Friday, November 30, 2012

Good News!

I used to get up early in the morning to enjoy the sunrise.  The last few months I have not been able to peel myself out of bed in time.  With all of Esther's appointments, I was thankful to have had more than the early morning lobby to see before 7am.  The sunrises are beautiful this time of year.  Maybe I can get into the habit again, but today Anthony and the kids did a great job of letting this light sleeper rest until past 9:30.

This the MIBG injection.
It's in a lead capsule
that connects to a saline flush.
The radiologist said there is such a tiny
amount in the syringe that every bit needs
to come out.  So she uses a two way valve
a pulling saline into the MIBG syringe.
She then shuts the valve and
pushes the saline in the MIBG syringe into
the line.  Repeat.  It is interesting to watch.
Okay, Okay.  With a title that says "good news," you're all...get on with it now!  Esther's transplant doctor, Dr. Giller, called today to review the tests results he's received.  First, the MIBG scan.  MIBG is a radioactive isotope that binds specifically to neuroblastoma cells.  Esther's scan reveal NO UPTAKE!  ANYWHERE!  

Bone marrow...completely CLEAN!

The CT scan showed nothing in her skull, face, or sinuses.  There is a calcified lymph node in her abdomen that may have had cancer cells in it at one point, but they are not living because it didn't light up in the MIBG scan.

All cardiac tests came back normal!

Her chest x-ray look good as far as tumor activity is concerned, but her right diaphragm is raised.  We will take another x-ray on Monday to determine if it was just the image or if there is potential nerve damage from the placement of her Broviac.  They struggled to place the line in an preferred area in her neck.  There is a possibility a nerve in the neck that controls the diaphragm could have been nicked in the process.  I'm not sure what the long term consequences of this would mean.  We would love prayer for a clear, clean x-ray on Monday.

Esther has had a fairly significant hearing loss.  One of the chemo drugs she had in two of the rounds is known for impacting hearing, specifically in the higher tones.  The chemo kills the tiny hairs in the ear that vibrate at higher tones.  While most hair will grow back, these ones won't.  For about half of the tones, Esther needs about double the volume to hear those sounds.  The audiologist said the loss has probably been a bit gradual and she probably does fine in one on one, quiet conversation, but that she will struggle in group situations or classroom settings.  The audiologist also said she could really benefit from hearing aids because the loss will impact her speech, but since she will be receiving another chemo along with her transplant that could damage hearing, we should wait until after her transplant to evaluate again.  

So, with all of this great news, why are we continuing with treatment?  Neuroblastoma is a very, very aggressive cancer.  The transplant doctor was telling us that not too long ago, survival rate was less than 15% and virtually all stage 4, high risk patients relapsed. 

It is important to continue to meet this aggressive cancer with equal aggression and completely decimate any cells that could be hiding anywhere in her body, just like Jehu.  

Next week Esther will have a kidney function test and a few other evaluations and meetings.  Please pray for her kidneys to be healthy.  This regimen is hard on the kidneys.  

On Wednesday Anthony and the kids came to visit and we all had a great time at Brent's Place! The kids played on the playground.  This is a big deal, we haven't let Esther play on a playground since she was diagnosed.  She was so happy!  Afterward they decorated cupcakes, and made some ornaments to hang on the Brent's Place Christmas tree.  Afterward, they played with some other children at the house and we all loved checking out the Christmas lights that a crew hung that day.  To end the day, we brought a nice, fresh cooked meal to up to our apartment.  It was even portioned out into to go containers for all seven of us!  A couple times a week "personal chefs" come in and make a meal for every person staying at Brent's.  It was a delightful day and the kids are very excited to visit again. 

Zinnia loves our little car, she was at home in this one!

Esther loves riding bikes!  This little tricycle was perfect size!

He's a pretty good captain!



This is a DREAM playhouse.
A real door, with a real handle, a living room, a kitchen, cabinets and cupboards,
 a REAL sink and even hardwood floors.  
There are even REAL, working windows.  

 To God be the glory, we are thankful.  The road ahead is still long and scary (more about that later), but God is faithful no matter what.


  1. Praise God for good news! I know we don't know each other well, but I attend Summitview, and I am an audiologist. If you have any questions about the hearing test, or hearing aids, please do not hesitate to ask. I'm usually sitting by the Pourbaix or Mullins families. Blessings to you all!! Andrea Hardy

  2. Brent's Place just brings tears to my eyes. What a special place and a special group of individuals that make it all happen. Touching people every day - a true gift they are giving to families that are in such a dark valley of life. Praise God for all the wonderful news! Thank you for sharing more specific ways we can pray for Esther. You have such a strong and brave girl. We'll pray for your family without ceasing.

  3. Praising God and praying the good news continues!

  4. We are all rejoicing with you and praying for the upcoming month! Much love and grace.