Thursday, November 26, 2015

Thanks Giving

This Thanksgiving, I am giving thanks for:

This girl...

KK's great attitude. I tease that she should have been named Pollyanna. You can't help but smile when she chooses to have an extra hour of infusion and says, "It will give me more time to do my homework."

My parents who have made it possible to work on Sundays without worrying about KK.

Friends who understand my need for normalcy.

Jenna for tutoring KK -- understanding when she needs to be pushed and when she needs to rest.

A church family that has gone above and beyond.

A job that is flexible and allows me to take care of KK's medical needs.

Friends who connect us to the best medical care possible.

The best medical care.

Answered prayer -- immeasurably more than we can ask or imagine! (KK's platelets were in the NORMAL range this week!!!)

God's healing hand.

God's grace and mercy during the toughest moments.

Happy Thanks Giving!

"Be joyful always; pray continually; give thanks in all circumstances, 
for this is God's will for you in Christ Jesus." 
~ 1 Thessalonians 5:16-18

Monday, November 23, 2015

Girls' Weekend

KK was invited to a Girls' Weekend in Boston with other teen girls who have experienced cancer. They spent the night at The W Hotel in Boston, went on a shopping spree at H&M, saw Elf the Musical, had a makeover, and took part in a professional photo shoot. She was completely exhausted when Nannie and Grampy picked her up Sunday night. She said, "The best part of the weekend was meeting and spending time with other girls who understand what it means to be sick."

The picture of the bus whisking the girls off is the only picture I have as parents weren't allowed to go on the trip. I can't wait to see the pictures at the photo reveal!

Thank you to the Gordon Family for your generosity, to the Jimmy Fund child-life specialists for organizing this trip, and to the nurses and staff for taking care of and spoiling the girls! KK had an amazing time!

Saturday, November 14, 2015


Cathartic, in its fullest definition, is a good word to describe last night.

      1. providing psychological relief through the open expression of strong 
          emotions; causing catharsis.
      2. (chiefly of a drug) purgative.
      1. a purgative drug.

KK took the first of five doses of the Temozolomide before she went to bed last night. She woke up at 11:35pm and started throwing up. She continued to do so for about an hour and a half. I tried giving her Zofran, but she threw that up almost immediately. As I sat on the floor by her bed, KK asked me to put on the "Charlie" playlist. We listened to the lyrics of the songs as we cried and cried out to God. KK expressed how she hates feeling so yucky, questioned why she had to get cancer and why chemo had to make her feel so awful, reiterated her trust in God as she listened to one song, and changed the lyrics to another song (Fighter, by Jamie Grace) to personalize it:

          She's been here before
          And she's only {thirteen} years old
          But she knows the name of every nurse she sees
          And though she don't like the chemo
          She waits it out never losin' hope that
          Someday soon she'll be cancer-free

Finally, it seemed like she might be able to hold something down. I gave her another dose of Zofran, we turned on a movie and waited. After 30 minutes, I asked KK how she was feeling. She said her tummy felt a little off, but she didn't feel like throwing up. She and I praised God for giving her some relief. After another 30 minutes, she felt fine.

This morning, I asked KK how she was feeling. She cheerfully said, "I'm good. I guess when I have chemo, I just have to throw up at night sometimes. In a weird way, it felt good to get it out of my stomach."

So, yes, cathartic is a good word for last night.

Friday, November 13, 2015

Amazing Rebound

KK's platelets are up! They went from 50 on Tuesday to 106...yes, 106!

Nurse Jill (who drew KK's blood this morning), KK, and I were guessing what the platelet number would be. Jill said 96 so they could "override" it and go ahead with treatment, KK said 90, and I said 110 claiming that God was going to show up and they would be able to go ahead with treatment without having to override it.

Mary Ann, the nurse practitioner, said that if she was a betting woman she never would have guessed that they would more than double in three days. In fact, she expected them to be at 40. I told her I knew that God had this.

So, they were able to give KK the Avastin infusion today and she will begin the five days of Temozolomide (at the full dosage!) tonight.

And, for those that prayed for no disruption in our Disney plans next month, they are not planning to delay the next set of treatments as long as her white blood cell, ANC, and platelet numbers are good!

Tuesday, November 10, 2015

Low Platelets

KK's platelet count was too low to move forward with treatment today. The low platelet count explains the fatigue that she has been experiencing -- moving slower than normal, sleeping later, needing a nap mid-morning, even sleeping in the middle of the noisy waiting room at Jimmy Fund.

We will go back to Dana Farber on Friday for another blood draw. If her platelet count is high enough, she will receive the Avastin infusion and will begin the 5 days of Temozolomide. If it is not high enough, we will probably go back to Boston some time next week to try again. If the platelet count drops too much more, KK may have to have a platelet transfusion.

It is not ideal to postpone treatment, so KK's team will assess whether or not to lower the dosage of Temozolomide.

KK saw that I was struggling a bit today. She sweetly reminded me that she is doing good and God is healing her.

On a positive note, the nurse practitioner (who we didn't get to see on Brain Tumor Clinic day) said that Dr. Manley was very happy with the results of the MRI two weeks ago. I got that impression when he met with us, but it was good to hear it again!

Monday, November 9, 2015

A Few Prayer Requests

We would appreciate prayer for the following:

  1. Pray for the restoration of KK's muscle tone. KK continues to experience neck and back pain and stiffness periodically.
  2. Pray for peace. I continue to fight an internal battle not to panic when KK is in pain.
  3. Pray for minimal nausea and no vomiting this week as KK should begin the fourth round of Temozolomide tomorrow.