Wednesday, July 29, 2015

MRI and BTC Update

We are home (a significant event in KK's mind) and KK is exhausted. I am not sure where to start, so I'll just start at the beginning...

We checked in at Children's just before 11:45 this morning. When the nurse came out to get KK, she started talking about doing an IV for the blood draw and contrast. I was confused. First of all, I thought the blood draw was going to happen through KK's PowerPort at the Brain Tumor Clinic (BTC) at 3pm, so I did not put Lidocaine cream on her PowerPort ahead of time to be ready to access at the MRI. For some reason, I was also unaware that the MRI today was to be an MRI with contrast. In all honesty though, it probably wouldn't have registered with me to prepare KK's PowerPort to be accessed for the contrast even if I was made aware of it. 

As all of that was going through my mind, I saw the panic in KK's eyes. She is a hard stick and we had hoped that having a PowerPort would keep her from having to have an IV. I was able to convince the nurse to do the blood draw and contrast through the PowerPort. This meant that we would have to wait half an hour for the Lidocaine cream to work. So we went back to the waiting room for 30 minutes, then they brought KK back to a prep room for the blood draw. Well, blood draws with KK are always an adventure. After trying four times, two nurses were simply unable to draw blood through the PowerPort and they had to insert an IV after all. The nurses introduced us to a Lidocaine spray to numb the area where they want to place the IV -- we will definitely be requesting this for any future IVs! We were very thankful that the nurse was able to get a vein on the first try.

During this time, the people for the MRI came in three times to see if we were ready. By the time KK was finally ready, another patient had an emergency MR Vent Check which meant we would have to wait for KK's MRI. (KK and I are familiar with emergency Vent Checks and totally understood.) At this point, I called over to the Jimmy Fund Clinic to let them know that we were going to be late for our BTC. KK finally went in to the MRI at 2:05 and was done by 2:50. She slept through the whole thing.

We then headed over to Dana Farber to the Jimmy Fund Clinic where KK was able to eat a quick lunch before they called her back to meet with her team. When we met with the BTC team, they said that the MRI looked as they expected. Dr. Mimi explained that they want the virus (AdV-tk) that was injected into Charlie to create an immune response where her body, in conjunction with the anti-viral drugs that KK took for two weeks after the injection, would start attacking the virus and Charlie.  This response creates swelling (picture a cut that is infected and the redness and swelling that takes place when your body tries to fight the infection) which is what was pictured on the MRI. Today's MRI will be her baseline and the next MRI will be in 8-12 weeks.

What the team really looked at today was KK -- how she looked, talked, and responded to all of their checks. The doctors were very encouraged at KK's progress.

Dr. Manley, who was unable to be there today, will take another look at the scans tomorrow. We will go back next Tuesday to talk to him about next steps (which will include rounds of Temozolomide and Avastin). 

Thank you for your continued prayers!

Tuesday, July 28, 2015

Precious and Powerful

Happy birthday and healing, dear KK!

Saturday, July 18, 2015

God-Ordained Moments...part 2

In my last post about God-ordained moments, I shared how God met KK in a very personal way while she was at camp. Here is how He met me...

While KK was at HUME, I spent most of my days preparing for Backyard Clubs (BYC): finalizing crafts and games, shopping for supplies, prepping the daily bins. There was a lot to do each day. It was nice to be able to go to the office and stay as late as I needed to get the job done. It was also nice to be able to go from store to store without worrying about KK (either pushing her too far or leaving her home alone). At the end of the day, I still had some work that I planned to do from the comfort of my couch.

The evenings were not as I ended up spending way too much time in my own head.

The evenings were there was no Kindle playing an audio book or music all night long from KK's room.

The evenings were dark...since I didn't have to leave the bathroom light on all night for KK. I dealt with a greater darkness though.

By Tuesday night, I couldn't stop thinking about the fact that a home without KK in it could be my reality by this time next year. Needless to say, I was a mess. I cried until I thought I could cry no more.

When I went to the office on Wednesday, I tried my best to hold back the tears. It wasn't long before Derek asked if I was okay and the floodgates opened. The staff surrounded me with prayer. (The love and care of this team is yet another reason why I love my job!)

On Wednesday evening, I did a little self-care then continued my BYC prep. As I read through the lessons and the corresponding Bible passages for BYC, God reminded me over and over again about His great love for me (and for KK)...

  • God’s Love is Incredible!  “You are forgiving and good, O Lord, abounding in love to all who call to you.” (Psalm 86:5)
  • God’s Love is Faithful!  “Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness” (Lamentations 3:22-23)
  • God’s Love is Invincible!  “There is no fear in love. But perfect love drives out fear.” (1 John 4:18a)
  • God’s Love is Unconditional!  “But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.” (Romans 5:8)
  • God’s Love is Real!  “You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature; rather, serve one another in love.” (Galatians 5:13)
The next day, I was still ready to cry at the drop of a hat, but I was doing a little better.

On Thursday evening, I started reading a book that I picked up at Mass Hope's Used Curriculum Sale a couple weeks beforehand. As I read, I was reminded that I need to keep my focus on God and not on the giant (known as Charlie) in front of me...

Focus on giants -- you stumble.
Focus on God -- your giants tumble.  
I'm a realist. I know that it is still a very real possibility that KK may not be here next year. However, I am choosing to trust that God's plan for both of our lives is perfect and that He will be with me no matter what tomorrow (or next year) brings.

Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills his purpose for me.

My heart is steadfast, O God, my heart is steadfast; I will sing and make music. Awake, my soul! Awake, harp and lyre! I will awaken the dawn. I will praise you, O Lord, among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; your faithfulness reaches to the skies. Be exalted, O God, above the heavens; let your glory be over all the earth.
~ Psalm 57:1-2, 7-11

Here is the song from BYC that I have been singing ALL.THE.TIME.

Did I mention that I bought the BYC materials back in March? I am so grateful that God met me in such an amazingly personal way!

Friday, July 17, 2015

Backyard Clubs #prayforKK

I just finished the second week of Backyard Clubs today. 

Our theme on Fridays is "God's love is REAL". We tell the story of how God answered the prayers of the believers by sending an angel to rescue Peter from prison (Acts 12:1-18). As part of the craft, we ask the kids to think about people they know or problems they face for which they would like to pray. We give the kids a chance to share their prayer requests before they write them down and make prayer chains to pray for their friends. 

Last week, I thought it was so sweet that a couple of the kids included KK in their prayer requests. Today, the first kid I called on to share a prayer request wanted to pray for KK to get better. I was overwhelmed when most of the kids put their hands down and said, "I was going to say the same thing." (I may be a little biased, but I believe Chapel Kids are the best!!!)

God's love is REAL and He REALly does answer prayer!

Thursday, July 16, 2015

God-Ordained Moments...part 1

You may or may not have noticed that I didn't post much last week...not even an update on KK's week at camp. There was a lot for me to process emotionally. It is still raw and I am not quite sure how to share what happened, but I will try. So without further ado, here is a brief recap of KK's week at camp...

KK had a great week at camp!

KK participated in as many of the team challenges as she could and had a blast doing so. Her team was even named HUME Champions...thanks in part to a few pirate-themed care packages! ;-)

HUME Champions 2015!
KK learned to play the cancer-card -- not in a "take advantage of people" type of way, but in a "funny, one-liners" kind of way. She said to one of our teen leaders, "I don't know what your problem is. I have brain cancer; you're just crazy." Rest assured, KK wasn't being rude -- I checked -- the teen was really acting crazy.

Among the myriad of questions I asked KK on our way home from HUME, I asked her what she learned during the main sessions. She started talking about a "movie" they showed about a teen who had cancer that came back three or four times before he finally died at the age of 18. I held her hand and cried silently as I listened to her explain what she learned from this video. She said she cried after the movie and that it felt good to cry.

At church the next day, I told Bethany that the only thing KK remembered about the chapel sessions was a movie about a teen who died of cancer. Bethany shared more of the story:

  • She shared that the speaker was greatly affected by KK throughout the week. During the video, he went out of his way to go over to KK and put his arm around her. 
  • She shared that our middle schoolers surrounded KK while she was crying after the movie. KK asked our group to tell her about Heaven and a couple of the boys started singing I Can Only Imagine
  • She also shared that KK and our middle schoolers had a huge impact on the entire camp, campers and staff alike.
I know I'm not doing this story any justice. I am just so grateful that God met my sweet girl in such an amazingly personal way!

This is Clayton's Story, the short film that was shown at HUME.

I will share my half of the story soon...

Monday, July 13, 2015


Another song for this journey...

KK always makes eye contact with me at the words "heal all my disease".

Sunday, July 12, 2015

Cancer Can't Change That

As KK and I were praying on Friday night, I prayed, "God, you know the number of KK's days and cancer can't change that."

This afternoon, KK and I were talking about the number of her days. The conversation started when KK said she wanted to "make it" to her birthday. I knew this desire was based on the fact that she has been waiting for a long time to be 13 so she can read a certain book and watch a certain movie, so I told her I would like to have more days than that with her.  Then she started talking about living a few years and "maybe even" turning 20 years old. I asked, "How about living for 30 more years?" She immediately jumped on that and said, "You said years, not days. I want to be old, maybe 50 or 60." I said, "50 isn't that old.  I'm pretty close to that now." So she said, "How about 120?" I said, "That works for me!" She said, "Yeah, by that time, you'll be dead, too."

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
~ Psalm 139:13-16

Man's days are determined; you have decreed the number of his months and have set limits he cannot exceed.
~ Job 14:5

Saturday, July 11, 2015

Cancer Survivor

KK declared today that she is calling herself a cancer survivor.

I won't argue with that!

Wednesday, July 1, 2015