Tuesday, June 30, 2015

Ahoy, Matey!

KK is having a blast at HUME New England! The theme for the week is "Aye Aye Cap'n!" and I am having a blast sending Pirate-themed care packages using Amazon Prime.

KK has thrown up a couple times...scoring bonus points for throwing up in a trash can and not on the brand new rug. Thankfully, she has been fine afterwards. She is so resilient! Shout out to Ms. Bethany (and all the girls) for taking it all in stride!

Sunday, June 28, 2015

Summer Camp

KK is at camp this week with an awesome group of Chapel Students!

Monday, June 22, 2015

Three is a Magic Number

Did you start singing as you read the title of this post?  If you didn't catch the reference, let me help you out...

...you're welcome!

Now on to why "Three is a Magic Number" today:

1. We went to Children's Hospital to meet with the neurosurgeon for the 6-week post-craniotomy follow-up.  She said that KK looked like a completely different child than the one she first met in the ICU and that she saw a sparkle in her eyes.

2. We made our way to Brigham and Women's Hospital for the final day of radiation therapy.  KK was in tears saying goodbye to all the wonderful people there.

3. We then headed over to Dana-Farber and the Jimmy Fund Clinic for her first blood draw on the PowerPort.  Her blood work looks good.

So, with these three appointments completed successfully, we have no plans to return to Boston until July 29 for Brain Tumor Clinic day which will include an MRI and meetings with KK's team.

By the way, I love the reference to "faith, hope, and charity" in the song above.  It is from 1 Corinthians 13:13 and is also translated "faith, hope, and love".  We have been clinging tightly to all three during this journey!

Saturday, June 20, 2015

Steroids and Swelling

A few weeks ago, KK asked the doctors if she could stop taking steroids. They gave us permission to wean her off of them.  She took her last dose on June 7. Unfortunately, she was not finished radiation...the radiation causes her brain to swell and the steroids were used to help reduce this swelling.

At the end of the first week with no steroids, KK threw up a couple times. This past week, the vomiting became more regular and she had a couple instances of double-vision that came and went.

We talked to her neuro-oncologist and radiation oncologist on Tuesday and Wednesday, respectively. They were hesitant to put KK back on steroids unless she wanted it. KK decided that she would rather throw up than deal with the side effects of steroids.

She has one more day of radiation on Monday. The swelling will take a while to settle down after that.  Please pray that the symptoms of increased pressure will lessen quickly.

Monday, June 15, 2015

Super Power

The PowerPort placement surgery went well today.  KK was able to transition from Pre-Op to the OR without medication since she was already relaxed.  The surgery lasted about 2 hours and KK spent just over an hour in the PACU before being discharged.  Her left shoulder is a bit sore (forcing her to use her right hand more), but she is feeling well.  Thank you for praying!

Sunday, June 14, 2015

PowerPort Surgery Tomorrow

KK will be having surgery tomorrow at 11:45am to have a PowerPort placed and her PICC line removed.  The PowerPort is for blood draws and chemo infusions.  It will also give KK a bit more freedom.  She will be able to go swimming, sleep over Nannie and Grampy's, and go to camp this summer.  She is excited to get this done, but she is also a bit nervous about having another surgery.  Please pray for God's peace.

Friday, June 12, 2015


There is no earthly reason that KK should have improved so dramatically after surgery #9.  I mean, she had three surgeries after surgery #5 with no change in "floppiness", word recall, etc.  I know that God heard the prayers of my girl when she laid all her anxieties before Him the day before that surgery, because He performed a miracle...and I know He's not done.  This is the verse I have prayed over and over:

"...being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."
~ Philippians 1:6


Here are a few songs on our playlist that encourage us as we travel to and from Boston each day...

Sunday, June 7, 2015

Buzz for KK

There was a "Buzz for Kids" fundraiser for One Mission at Gillette Stadium this morning. We had our own Buzz Off here in Shrewsbury.

This past week, KK noticed that more cornrows were "lifting". She was ready to take out her braids and see how much hair was left. I took her braids out yesterday and she was left with a little mohawk. KK decided she wanted to shave the rest of her hair, so I asked Grampy to bring his clippers with him on Sunday morning. So after first service, Grampy got the job done!
KK and her new hairstylist

Friday, June 5, 2015

Shunt Failure PTSD

KK has been tired today...in good spirits, but tired.  As she was laying her head on my shoulder while waiting for radiation, she had me look at her head because it felt "weird".  I looked at the shunt area and thought, "Oh no...two symptoms".  I told KK that I was going to get one of the nurses in the other room to look at it.

KK started crying; I tried not to panic.

The nurse came over to look at it.  She was unsure if something was wrong since this was not her specialty.  She said we should have neurosurgery look at it since we were in Boston.

KK cried a little more; I tried not to panic.

The radiation therapist came to get her at that moment, so she was still crying a bit as she got on the table.  The therapists asked if she wanted to wait a minute.  KK took a breath and said she was ready for radiation.  (Gotta love her courage!)

I called neurosurgery while she received her treatment.  They told us to come over when we were done and the resident on call would take a look.  I got a wheelchair and we were off.

KK prayed as I wheeled her through the halls and over to Children's.

When the resident looked at the shunt, he said it looked fine and that we were probably noticing differences because the swelling around the shunt has diminished and we were "seeing" it through her skin for the first time.  (This particular resident thinks I panic too easily.  Where's the resident who thinks I'm strong when I need him?)

KK and I praised God in the same halls we had just prayed in as we went back to Brigham and Women's.

Tuesday, June 2, 2015

Clinic Day

Today was clinic day at Dana Farber's Jimmy Fund Clinic (in addition to radiation at Brigham and Women's).  For now, clinic days happen once per week.  They include blood draws, PICC line dressing change, and meeting with KK's oncologist, Dr. Hanson.

KK wanted to talk to Dr. Hanson about 2 things:
  • Getting off steroids - Dr. Hanson gave us permission to wean her off the steroids.  
  • Getting rid of the PICC line and replacing it with a port for blood draws and infusions (which will be part of phase 2) - Dr. Hanson is going to talk to radiation about when would be best to do the surgery for the port.  KK would like it done sooner than later so she can go swimming.  She was glad to hear that it is a day surgery and she won't have to stay overnight.

We received good news at clinic today:
  • Each week, they use the blood draws to track different levels (i.e. white blood cell counts) to make sure they don't get too low.  Last week, KK's levels were good.  This week, her counts were even better!
  • When they removed more of "Charlie" at Children's Hospital during surgery #7, they tested it for certain markers to find out which chemotherapy drug the tumor would respond to best.  The results came back this week and they confirmed that the tumor is sensitive to Temozolomide, the chemo they started giving KK two weeks ago.