Wednesday, August 24, 2016


When I told KK's neurologist, Dr. Ullrich, about the recent bouts of right-sided weakness, I mentioned that I had a fleeting thought that they might have been caused by seizure activity. She suspects they may have been, so she increased KK's dose of Keppra (anti-seizure medicine).

Dr. Manley considers today's MRI to be stable with some enhancements to the tumor area. For those unfamiliar with oncology's definition of enhancement, it is not the positive "increase or improvement in quality or value" is an increase in the size of the tumor area. The enhancements may be tumor growth or post-treatment changes (possibly from radiation). I suggested that it could also be from swelling caused by the Vitamin C.

When we compared June's MRI to today's, I could see the increase in size that he pointed out. Dr. Manley said that they will watch these areas closely. I asked if that means we will return to a 6-8 week MRI schedule. He thought we could continue to wait 10-12 weeks, but he said if I felt we needed one sooner that they could arrange that.

As I looked at the two pictures, I saw some areas that seemed to have more definition in the folds of her brain (where the tumor was previously filling in empty space). I asked Dr. Manley about it and he agreed that it did look better.

Dr. Manley thinks that KK looks great clinically and is okay with us continuing our current treatment.

Dr. Manley said, "I treat people, not pictures." It reminded me of what Nurse Megan told us before March's MRI, "An MRI is just a picture." For those that want to see comparison pictures anyway, here they are...

June 8:

August 24:

June 8:

August 24:

Click here for the rest of the MRI images from August 24.

Tuesday, August 23, 2016


Tomorrow is MRI and BTC (Brain Tumor Clinic) day at Dana Farber. The days leading up to a scan can cause anxiety that many cancer patients (and parents of pediatric cancer patients) have termed SCANXIETY.

I was reading a list of ways to deal with scanxiety tonight and laughed at their number one way to deal with scanxiety: DISTRACTION. I laughed because we certainly had a lot to distract us last week.

Last Monday, KK and I went over my parents' house to see my aunt and uncle who were visiting from Florida. When we got there, we found out that something happened over the weekend and my uncle was not doing well. My dad and aunt wanted to bring him to the hospital, but he was unable to walk so we called 911 and they brought him to Leominster Hospital. The whole experience brought up a lot of emotion for KK -- sadness, anger, frustration -- as she remembered ambulance rides, ER visits, being told she was going home then having emergency surgery. My dad encouraged her to stop crying and she told him she could cry if she wanted to (hmm, I wonder where she got that from?!?). When we left the ER, KK and I talked and she was able to process her feelings as we drove home. She said, "It felt good to cry." We spent the rest of the week visiting Uncle Dave at the hospital after work/KK's treatments.

The distraction worked to a certain extent, since I was too tired to think of anything by the end of each day. However, I would rather not use this coping mechanism to deal with scanxiety again. I would much rather cope with scanxiety by doing what God tells us to do with any anxiety:

Cast all your anxiety on him because he cares for you.
~ 1 Peter 5:7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

Sunday, August 14, 2016

In My Head or KK's

Over the last couple weeks, I have been worried about KK's vision. I couldn't explain why and I had no idea if it was just in my head. I brought up my concerns when we were at Dana Farber last Tuesday, but KK's vision didn't seem too off that day and they weren't too concerned at the time.

Right after church today, KK experienced right arm weakness and slow, slurred speech. When I asked her to squeeze my hands, she was barely able to do so with her right hand. I asked Pastor Derek to come and pray with us, then I brought her home. She took an Epsom salt bath and a 2 hour nap. When she woke up, her strength was getting better, she wasn't slurring her speech, and her eyes seemed brighter.

There is so much going through my head right now...

  • Is this all in my head or is there something serious going on in KK's? 
  • I hate PTSD.
  • It has been KK’s vision that has tipped me off that something has been wrong multiple times throughout this journey.
  • She had a super busy, non-stop weekend and I hope the symptoms today were due to exhaustion.
  • I was (and am) worried that today's symptoms are a precursor to a seizure. I have the baby monitor on full volume for the first time in months.
  • I am worried that there is tumor growth. This worry is fueled by the fact that she has been out of "cancer-fighting range" for the last 2 months.
  • Because she has been below "cancer-fighting range", we have increased her vitamin C from 50 to 112.5 grams over the last month. This may be causing swelling that leads to cell death (apoptosis).
  • KK's next MRI is in 10 days...will I be able to last that long?

I would appreciate your prayers for peace, wisdom, apoptosis, and complete healing.

Saturday, August 13, 2016


Driving "home" for the first time!
I love that KK is wearing a Wally Red Sox shirt in this picture of her first ride home 8 years ago today. It seems apropos considering she had the opportunity to run home (twice) at Fenway Park today.
Running "home" today!
(I promise she is wearing a Red Sox t-shirt under that Patriots sweatshirt)
I told KK, "I'm so glad I gotcha!" and she responded, "I'm so glad I said yes!" We are both so grateful to be home together.

Friday, August 12, 2016


Go Red Sox!

Jimmy Fund Red Sox Weekend

KK is at the Jimmy Fund Red Sox Weekend with other teens that have been affected by cancer.

Those who know us will appreciate her comments:

  • "I am not a huge baseball fan, but I have chosen the Red Sox as my team."
  • "I can watch a football game because there is a lot of action, but baseball can get a little boring -- but not as boring as golf."

She is still planning to have an amazing time with a player meet-and-greet, watching the game in a luxury suite, staying at the Westin Hotel, followed by a day full of fun tomorrow.

The child life specialists at the Jimmy Fund Clinic are phenomenal! They know how to make all the kids feel so special. They have even gone out of their way to meet KK's dietary needs.

The Jimmy Fund Clinic team is posting updates of the weekend here if you'd like to follow along.

Thursday, August 4, 2016

You Should Blog About This

KK and I went on a little adventure on Wednesday to see the Moss Glen Falls. From what I could tell on the internet, the falls were just a short hike from a parking area. Most of the hike was flat and easy enough. As we walked along, KK said, "You should blog about this."

It was here that KK said, "You should blog about this."
Just after she said that, the path became more of a climb and KK was pretty nervous at certain points. We made it to a lookout with a beautiful view of the falls.

The view is worth it!

As I took a picture of KK with the falls in the background, I could see the fear welling up in her. When we started to climb down, she prayed, "God, help me to not be as afraid as I was climbing up here." She cried as I talked her through each step. As we hit level ground again, KK took a deep breath, regained her composure, and prayed, "God, thank you for helping me defeat this giant of fear." When we encountered people going to the fall, she told them, "It's a little climb, but the view is worth it!"

This is KK's "I have no idea how I'm going to get down from here" face.

As we drove back to the Trapp Family Lodge, we talked about the lesson found in what we just did: 

Just like KK followed my instructions and stepped where I told her to step despite her fear, we need to follow God's instructions and go where He leads despite our fear and uncertainty.

Wednesday, August 3, 2016

Such A Gift

Thanks to a very kind and generous family from Chapel, we are enjoying a week in a Guest House at the Trapp Family Lodge (as in Von Trapp of The Sound of Music fame) in Stowe, Vermont. This vacation has been such a gift on so many levels, besides the obvious gift of giving us their timeshare for a week. It has been so nice to relax and not have to do anything or be anywhere.

Monday was a rainy day, so we made a fire and watched movies most of the day while KK received her Vitamin C treatment on the couch.

The lodge offered a campfire and sing-along on Tuesday where we sang a variety of songs, including some from the The Sound of Music. The woman did her best to take requests, but she didn't always know all the words. When KK requested a song, she stood right by her to help her with the lyrics.

The view from our Guest House

This is the first time we have gone away since KK began eating a raw vegan diet (aside from camp where they had a chef willing to accommodate all of KK's dietary needs). Thankfully, the Guest House is equipped with a full kitchen. We brought lots of veggies, hummus, and fruit, as well as the Ninja IQ to make smoothies for KK.

I decided that KK could take a little vacation from the raw part of the raw vegan diet as a treat when we go out to eat. So I scoured the menus of local restaurants for vegetarian options. She has tried a spicy vegetarian soup, veggie chili (her favorite thus far), and a veggie burger with a lettuce "bun". She has found such joy in each meal! Much to KK's delight, there was even a little bookstore in the same building as one of the restaurants we went to for lunch.

For those that know how picky I am, it may amuse you to know that I was so concerned about what KK would eat that I forgot to make sure there was something I would eat on the menu as well.