The "Eyes" Have It

KK has completed 6 IV Vitamin C treatments. I want to keep track of her progress as seen through my eyes...

When I spoke with KK's medical team at Dana Farber, I told them that one of the things I will be watching closely is KK's eyes. I knew something wasn't right in the days leading up to the MRI when KK's eyes weren't tracking well. Though I didn't know it was due to tumor growth at the time, I also knew something was off when we were at Disney and she kept bumping into things on her right side.

After the second IVC treatment, KK's eyes seemed to be tracking better, though one was wider than the other (it looked like one eye was "bugging out"). Today, her eyes are just about even and are tracking well. Through my own crude examination, I believe her peripheral vision has improved slightly as well.

At dinner tonight, I was watching KK use a knife to slide the last of her salad on the fork. I was struck at how steady her right hand was. I pointed it out to my parents and asked, "Am I just making this up?" They agreed that her right hand looked much better.

I lift up my eyes to the mountains— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you— the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore. 

~ Psalm 121

YouCaring

Multiple people have asked how they can help us during this time and quite a few have suggested that I set up a GoFundMe or YouCaring account.

First and foremost, pray! Prayer is the most important thing you can do for us.

If you would like to help financially, I have set up a YouCaring fundraising account to help pay for the cost of the IV Vitamin C treatments and traveling expenses.

Please do not feel obligated to give. Your prayer support is what we really need.

Ceaseless

I received an email from my friend Vickie today that I just had to share. 

Hi Tanya,

I have an app on my iPad called "Ceaseless".  It sends me a Bible verse and people from my contact list to pray for each day.  This was today's verse:

And Moses cried to the LORD, “O God, please heal her—please.”  Numbers 12:13

Can you guess which of my contacts popped up following this verse?  Praying this verse for KK today.

Love,
Vickie

Continue praying God's Word over my sweet girl!

Raw Vegan

For the time being, KK is eating a raw vegan diet to help her body work with the IV Vitamin C.

I am so grateful that she is not a picky eater. She has had a few "Awww, I can't have mac and cheese (or other favorite food)" moments. Then, in the next breath, she says, "I can have strawberries for dessert or cucumber slices for a snack."

Plan of Attack

KK's team is on board with the intravenous vitamin C (IVC) therapy. I presented the two schools of thought -- the first being the IVC only approach, the second being the IVC as an adjunct therapy with either Optune (which, as I suspected, is only for adults right now), Low-Dose Naltrexone, or metronomic chemotherapy (a low-dose of chemo given daily rather than a higher dose given on a 5/28 day cycle).

Dr. Manley suggested a specific metronomic antiangiogenic protocol (a combination of drugs given at a low dose that block cancer blood vessel growth) that they have used. This protocol is not known to cure cancer, but it has been shown to slow or stop the progression of some tumors. It has never been used alongside IVC though. 

The protocol includes five drugs. KK is already taking one of the drugs, Celecoxib (Celebrex). We are choosing to use only three of the other four. The protocol usually cycles two chemotherapy drugs to prevent toxicity overload -- taking one chemotherapy drug for 21 days, then the second one for 21 days, then back to the first. The second chemotherapy drug, Etoposide, has been known to cause hair loss, so we have chosen not to use it for KK's "quality of life".

We will begin this protocol next week...or as soon as the insurance approves the drugs.

We started the IVC last Friday and will be going to New Hampshire four times per week for the foreseeable future.

We will most likely have MRIs every eight weeks (instead of twelve) unless it is deemed necessary to have one before that. Thankfully, the team knows me well enough to trust me when I express concern.

As we attack this tumor using weapons like IVC and the antiangiogenic protocol, please don't forget to continue to attack it through prayer!

High-Dose Vitamin C

After many prayers for healing prayed, tears shed, and prayers for wisdom prayed, KK and I are ready to stand and fight!

The anecdotal evidence I have read about high-dose vitamin C IV therapy in "inoperable" cancer has given me hope. KK and I are going to NH for a consult about IV Vitamin C (IVC or IVAA) therapy tomorrow morning.

IV Vitamin C therapy is an integrative therapy and is often used in conjunction with traditional chemotherapy treatments. I don't think it is currently offered at Dana Farber. However, that didn't stop me from emailing the nurse practitioner at Dana Farber listing all the things I'll be bringing to the table next week and stating that I would like to try IV Vitamin C therapy. I also suggested that if they don't offer it at Dana Farber, then they should begin a trial and KK could be their first participant.

Keep praying that God will perform a miracle...whether in an instant or through the therapies He leads us to.

KK's Prayers

I've been treasuring some of KK's prayers over the last few weeks...

A couple weeks ago, as I fervently prayed (and cried) over KK for God's healing, KK started praying for me, "If You choose to take me, I pray that You will help my mom not to be too sad."

She prays for the salvation of her birth family all the time so she will be able to see them in heaven. She especially prays for her youngest sister, Zapharia, whom she has never met.

KK faithfully prays for others who have cancer to be healed...specifically for Ms. Kelly's (from church) cousin's son and for Nate Solder's (from the Patriots) baby.

After I pray for her healing, KK prays (almost to remind me), "God, You know the number of my days."

After the MRI results, KK wanted to pray, so we all (Nannie, Grampy, the Nurse Practitioner, KK's psychologist, KK and I) held hands as I prayed, then KK ended the prayer by saying, "I'm glad I know where I'm going when I die."

KK has prayed many times that she will be an example to people as she trusts in God through this difficult time.

Tonight, she prayed, "Dear God, I pray that You keep me and my mom strong as we take this journey together."

Treatments and Trials to Consider

Because I can't wait until next week...

St. Jude's trial - SJHG12
SJHG12 chemotherapies: Crizotinib, Dasantinib

Memorial Sloan Kettering's trial - PD-1
PD-1 (Programmed Cell Death 1) chemotherapies: Pembrolizumab, Nivolumab

Other things I will be bringing to the table: Optune (Novocure) or ECCT (Electro-Capacitive Cancer Therapy), DCVax, Newcastle Virus, CAR T-cells, IV Vitamin C, GBM Agile Trial (set to begin mid-2016), ultrasound to open the Blood Brain Barrier, repurposed drugs such as Low Dose Naltrexone and Chloroquine... I know some of these are only for adults, but it doesn't hurt to ask.

Other chemotherapies to consider: PCV (Procarbazine/CCNU/Vincristine), BCNU (Carmustine), IPT (Insulin Potentiation Therapy), metronomic chemotherapy

Infiltration

The MRI results were not good.  What I considered to be swelling over the last couple of weeks, was the tumor growing and pressing on KK's brain.

When KK had the two surgeries (one at UMass and one at Children's) to remove the tumor, they did their best to remove as much as they could see. Glioblastomas typically have "tendrils" that surround the brain tissue and this is what they injected the Adenoviral Vector Trial into during the tumor resection at Children's. It is these tendrils that have grown and have now infiltrated the folds of the brain at the visual cortex on the left side (which accounts for the loss of peripheral vision on her right side).

MRI images from January 20, 2016

Where we stand right now...

• The tumor growth is not a mass that can be removed, so there is no talk of surgery.
• It is safe to say that the Temozolomide and Avastin treatments aren't working, so they did not proceed with treatment today.
• We will regroup with KK's medical team early next week. We will put everything on the table -- new chemo drugs, new trials, even the possibility of new hospitals (St. Jude's, Memorial Sloan Kettering,...depending on what trials are offered where). 

Ultimately, we are standing on God's promises that He who began a good work in KK will be faithful to complete it.

Update #2

From what I can tell, the blood counts look good....which means she will be able to have the Avastin infusion and will begin five days of Temozolomide tonight.

On to MRI at 1pm...

Update #1

KK's hearing is perfect!

On to blood draw...

Faith Over Fear

I have been anticipating this week's Brain Tumor Clinic for the last month or so. Up until a week ago, I was looking forward to seeing how God was continuing to heal KK. However, I started to fear that the MRI scans would show regrowth or new tumors when KK began exhibiting signs of swelling this past week. I thought that KK's edema was under control and it scared me to think that it is only controlled by medication.

I realized today that this fear is not from God. It is from the enemy who "comes only to steal and kill and destroy" (John 10:10) and he is trying to steal my hope.

I don't want to live in fear.

I will not live in fear.

I will trust, as KK says, that God has a good plan for her life.

KK and I spent time praying through Ephesians 6:10-18 tonight.

Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.

~  Ephesians 6:10-18

We know that our strength is found in God alone, so we will be strong and courageous (Joshua 1:9). We know that the devil wants to steal our hope, so we will stand firm and trust the God of hope (Romans 15:13). We know that the heart is deceitful (Jeremiah 17:9), so we choose faith over fear. We know that God is the Great Physician, so we pray for Him to heal KK's tumor, edema, headaches, stiff neck, vision, hearing, and right-sided weakness completely. 

Will you wield the sword with us this week and pray through the truths of Scripture for KK? If so, please share the Scriptures you are praying through in the comments. If you're not sure where to start, here are a few ideas:

• Psalm 31
• Romans 8:28-39
• 2 Corinthians 1:3-11

Be Prepared

(source)

This sign pretty much sums up why KK and I talked about what would happen if next week's MRI shows tumor growth or new tumors. I explained to her that further surgery may be necessary, new treatments explored, etc. KK said, "If they tell me the cancer is growing or there are new tumors, I will pray, then cry, then pray some more."

MRI Scans from April

In anticipation of next week's MRI, I finally ordered a copy of the MRI scans taken before and after the first tumor resection at UMass University Campus.

MRI images from April 8, 2015

MRI images from April 11, 2015

The July and October MRI comparisons can be found here.

Throwing Me for a Loop

After I woke KK up to get ready for church yesterday, she said she wasn't feeling well. I asked her if she wanted a Zofran and she said yes. I gave her half of a Zofran tablet and had her lay back down. Thankfully, she felt better after 15 minutes or so and we made it to church.

After lunch, I had her take a nap. When I tried to wake her up an hour and a half later to go to ReFuel, she said she would rather sleep some more.

This morning, I was awakened by KK saying, "I just threw up". She felt it in time to grab the bucket, but she didn't recognize the nauseous feeling in time to tell me before throwing up. After taking another half of Zofran and resting a bit, she felt well enough to eat some fruit for breakfast. She is sleeping now.

KK has been off Celebrex for 10 days while we wait for a prescription renewal (I didn't notice that there were no more refills until we had one dose left) and insurance approval. I know the Nurse Practitioner said that she didn't think Celebrex would reduce brain edema, but I still wonder if the nausea and vomiting is due to an increase in swelling since being off Celebrex. (Just for the record, I have also noticed that her eye tracking has been a little off over the last few days as well.)

She has worked hard at hydrating better this week. However, this has disrupted her sleep as she is getting up multiple times at night to go to the bathroom. It is also the week when her blood counts plummet, so I am not surprised that she is tired. I just don't like the nausea and vomiting. It's really throwing me for a loop.

Countdown to the Next MRI

It has been 9 months since KK was diagnosed with a Glioblastoma Multiforme Grade IV brain tumor, a.k.a. Charlie.

In 9 days -- on Wednesday, January 20 -- KK will have her next MRI.

It will be a crazy full day of appointments running back and forth between Children's and Dana Farber beginning with a hearing test at 9:30. I plan to leave by 7:30am and expect to return home around 7:30pm.

I have found myself spending a lot of time researching other treatment options over the last week...just in case the current treatment isn't working. I have no reason to think that there is regrowth or recurrence. I just feel the need to be prepared...and, hey, knowledge is power!

I am actually looking forward to seeing what God is doing on the inside. From the outside, KK looks great and is definitely getting stronger.

Anticipatory Grief

There is a name for what I had been feeling over the last couple of weeks: anticipatory grief. Thanks to Susan for helping me put a name to what I was feeling. It helps to know that this is a "normal" part of caring for someone with a life-threatening diagnosis.

Chemo and Zofran Update

I completely forgot to post an update on how KK tolerated the last round of Temozolomide.

Aside from the never-ending headache (updates here and here), KK felt pretty well the whole week. We did much better with the Zofran schedule this time. I was a little late giving her the Zofran on two days. The first time it happened, we were at Whittier Rehab for her therapies. Speech Therapy was scheduled to begin at 4pm which is also Zofran time. When we checked in a few minutes early, her therapist was ready and offered to begin right away. By the end of the session, KK was very quiet and still. We asked if she was okay; she said she was fine. As KK and I walked over to Occupational Therapy, I realized we missed the 4pm dose of Zofran. I gave her the pill and she perked up midway through OT. The way I described it to KK was that her body seemed to focus so much on not being sick that she was no longer able to do anything else. The same thing happened about 35 minutes after the second missed dose.

As far as the headaches are concerned, I have a couple theories. First, I believe KK needs to hydrate better. Second, I wonder if the full dose of Zofran (8mg every 8 hours for 7 days) is too much for her. We used to have a 4mg dose of Zofran (prescribed by UMass) that I gave KK from time to time instead of the 8mg dose. When we ran out of that dosage, I talked to the Nurse Practitioner about giving her a half dose of Zofran at times. She said that KK's height and weight allows her to have 8mg of Zofran, but it would be okay if I wanted to cut the pills in half. I am going to try this for the 2 days after the Temozolomide is done to see if that helps the headaches.

O Hop-py Day

This Minion likes frog legs. :)

Heaven

I wrote this for the January edition of Kids Connect, the Chapel Kids newsletter, and thought I'd re-post it here...

Frankly, I am so ready for a new year. As I look back at the past year, I am thankful that God redeems the most difficult moments and can use all things for His glory, but I am still ready to put 2015 behind me. 

This morning, I was overjoyed to hear that one of our first graders asked Jesus to be her Savior over Christmas vacation. As she shared this wonderful news with me, I told her I was so excited to be able to spend forever with her in heaven. 

After this conversation, it hit me: it is not a new year that I am ready for, it is heaven. I am ready for a place with no more sickness and no more tears. I am reminded of Paul’s words in Philippians:

“For to me, to live is Christ and to die is gain.”

Until that day, it is my desire to glorify Christ and to be found faithful.

Hard

Over the last week, there were some moments that were hard...the lump-in-your-throat, don't-speak-kindly-to-me-or-I'll-cry hard.

Decorating a birthday cake for Jesus was hard...
KK struggled to squeeze the frosting onto the cake. I came behind her to squeeze with her, but it was too difficult for her and she gave up.

Christmas dinner was hard...

While sitting around the table with my parents and KK, I said, "I need every one to tell me something good about 2015." All we were able to say was that KK was with us. 

Opening Christmas gifts was hard...

KK wrote a sweet letter to me that Jenna framed beautifully. I could barely read it out loud.

The Monday after Christmas was hard...

While KK was in the bathroom, her Physical Therapist asked me how our Christmas was. I choked back tears as I whispered, "Hard." She looked at me and said, "But she's doing so well." I completely lost it and said, "But she may not be here next Christmas." Then she asked, "Is this cancer that aggressive?" I sobbed as I nodded. She sat next to me and gave me a hug.

A 26-hour headache was hard...

A headache will never just be a headache even if I know there are legitimate causes for it.

Going to see Star Wars: The Force Awakens was hard...

When KK said, "Awww!" at the end of the movie because she wants to know what happens next, I held back tears because there are two more parts to the trilogy that she may never see.

I would really like to NOT have any hard moments in 2016.

If that is not to be, then...

• I will cry when things are hard, because there are times when I just can't hold back the tears.

• I will pray when things are hard, because I know I have a God who understands.

Therefore, since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are--yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. 

~ Hebrews 4:14-16

• I will trust when things are hard that God has a perfect plan for KK's life and cancer can't change that. I know God can heal her completely. If He chooses to do so, we will give Him all the glory. If He chooses not to, though it may be hard, we both want to give Him the glory.