Enhancements

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"...it 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.

Scanxiety

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

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.

Home

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.

Wally

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.

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.

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.

Happy Birthday!

I can hardly believe that KK turns 14 today! The sweet girl I met 8 years ago is growing into a beautiful, faith-filled young woman. I am so proud to be her mom.

KK's "first" birthday!

Would you take a moment to leave a birthday message for her in the comments? I know she would be thrilled to read them.

God Gives Us Hope

During Backyard Clubs this summer, we follow the story of Joseph as found in Genesis.

On Mondays, we focus on the truth that God give us hope. After having the kids act out the beginning of his story, I had "Joseph" sit in the middle of all the kids and we ticked off all the awful things that happened to him. Then we talked about how he could not put his hope in his father, in his brothers, in Potiphar, in the jailer, or in the cupbearer...the only one he could put his hope in was God. I asked the kids to share things that have gone wrong in their lives, then wrapped it up by talking about KK's story. I had to choke back tears as I ticked off some of the things that KK has gone through: 11 different homes before we adopted each other, the brain tumor diagnosis and 11 subsequent surgeries. I reiterated that she couldn't put her hope in the people who said they would adopt her, in her social workers, in medicine or in the finest doctors.

While I was telling the story during the morning Backyard Club, my phone started buzzing away and I wasn't able to answer it. My friend, Jenna, had brought KK to treatment and was trying to get a hold of me. It turns out that The Rothfeld Center received the results of KK's last blood serum test while she was at camp and her numbers were below cancer-fighting range. They wanted to increase her dose of vitamin C back up to 75 grams. KK was nervous about returning to 75 grams because of the pressure and headaches she remembered and she didn't want to do it without my consent. Since they were unable to get my consent in time, they gave her 50 grams. When I finally got the voicemail and texts, I desperately wanted them to up the dose to get her back in cancer-fighting range but knew that it was too late. It was killing me to think that she has probably been out of cancer-fighting range for the last month. It was at that moment that I realized that I needed to stop putting my hope in the vitamin C and put it back in God.

A couple hours later, Jenna dropped KK off at the afternoon Backyard Club just in time for me to ask her to take Joseph's place at the end of the story. I, again, talked about the things she has been through, then she said, "It was hard to trust people. I learned to trust my mom, then I learned to trust God." KK is such a beautiful example of someone who has put her hope in God!

Re-Camp...or Camp Recap

KK "passed" her swim test with the encouragement of Mrs. Bryan. She received her swim bracelet...then never stepped into the water again.

She thought the modesty dance they did to show girls what it means to and how important it is to dress modestly was hilarious. She "peed her pants" when Mr. Ed "apologized" for wearing his booty shorts.

In addition to veggies and hummus, the chefs at HUME were great about providing a nice selection of fruit at each meal and salad was available at lunch and dinner. They tried to "spice things up" by adding things like mushrooms to her usual veggies and hummus so she didn't get bored with her food. KK simply told them they didn't need to bother because she wasn't going to eat those things. She eats a lot of things, but she does not like mushrooms unless they are hidden in food.

Unbeknownst to KK, she had a great impact on a group of girls that were caught up in some middle school teen drama when they saw all that KK goes through and yet still wakes up singing.

KK was excited that her team was crowned champions once again...thanks in part to the work her cabin put into memorizing the Bible passages for the week.

The hardest part of camp for me was explaining to the nurse and others that there are signed DNR papers in KK's rescue med bag. I told them that the papers would need to be brought to the hospital with KK if she had to be transported there, but they were not to be given to the EMTs or the hospital staff...I wanted to be able to make that decision if the time ever came. Thankfully, they were not needed!

Get 'Er Done

KK took a little break from all the fun at camp to receive her treatment today. We went to the infirmary, I mixed the meds and accessed her port, then we settled in for a couple hours. KK spent the first half reading and the second half snoozing. That is how we get 'er done at camp!

Ride 'Em Cowgirl

KK is having a blast and working hard at HUME New England! 

IVC on Vacation

KK is at HUME for summer camp again this year!

I spoke with Beth, the nurse practitioner at The Rothfeld Center, about a month ago to figure out how we could continue treatment while KK was at camp in the Berkshires. I mentioned that there was a place about an hour from the camp that administers IV Vitamin C. Beth said it was customary for many integrative medicine centers to help each other and she would contact them to see if they would be able to treat KK one or two times during the week. The receptionist at the other center said they had a waiting list and wouldn't be able to fit KK in. Beth asked Dr. Rothfeld to contact the doctor of the other place to see if he might be able to change their mind. As of last Tuesday, we had not received a response, so we came up with a plan B: I would purchase the supplies to administer the vitamin C myself. Of course, when we went for treatment on Friday, they heard from the other doctor and he said they would fit us in. At that point, I already had my head wrapped around doing it myself, so we declined.

I gave KK a treatment before we left for camp and I will go to HUME on Wednesday to give her another treatment. We will do the same thing when we go to Vermont for vacation in August. It is so nice to have this as an option!

Don't Change A Thing

KK had a regular clinic appointment at the Jimmy Fund last week. After the nurse practitioner, MaryAnn, asked all the usual questions and examined KK, she said, "Don't change a thing."

High praise, indeed...especially when you consider the skepticism we received when KK first began eating a raw vegan diet and doing colonics.