Choosing to Trust

Here is the link to yesterday's sermon where KK and I were able to share how we choose to trust God through this journey.

Oh My Soul

KK and I are sharing our story at church tomorrow, talking about...

• choosing to trust God even though we have questions
• honestly bringing our heartfelt, gut-wrenching questions directly to Him
• expecting Him to answer
• knowing He has a good plan for us
• always remembering the hope of heaven

Lysing

God designed our bodies to remove things that don't belong there through the colon, kidneys, skin, lungs, and mucus linings in the nose and ears.

Since the symptoms of swelling subsided a couple weeks ago, KK has been spitting out phlegm without coughing, nasal discharge, or any other signs of a cold. It reminded me of the time right after the apoptosis sneeze back in February when KK's nose kept running and running but she didn't have a cold. There have been a few other times when things coming out of different orifices made me wonder if KK's body was releasing cancer cells.

All of these could very well be signs of lysing: the process of eliminating the waste product of cancer cell membranes that have popped. If so, I am grateful that the waste from the cancer cell die off is being removed before Wednesday's MRI!

I Understand

I understand that God's creation is amazing. He created fruits and vegetables that contain the necessary vitamins and minerals to nourish our bodies and support our immune systems...not to mention the complexity of that immune system.

I understand that God continues to provide for all our financial needs even though insurance does not cover the cost of the IVC treatments or colonics.

I understand and am so thankful that God has blessed me with a child willing to forego processed foods and eat a vegan diet to starve the cancer.

I understand that God gives wisdom to those who ask...and, boy, have I asked (and received).

I understand that God has a good plan for KK even though this is not the path I would have chosen.

I Don't Understand

I don't understand how the FDA can approve "MIBG Therapy" that injects a child with radioactive medication and then secludes them in a lead-lined room even though it does not cure cancer, yet they won't approve the use of vitamin C given in high doses intravenously to treat cancer.

I don't understand why insurance companies will pay $8,000 for a bolus of Avastin every two weeks, but won't pay $130 for IVC three times per week (for a total of $780 every two weeks).

I don't understand why cancer hospitals promote the consumption of simple sugars and carbs or use a high-glucose solution when cancer patients need to be fed intravenously knowing that sugar feeds cancer. (And, yes, I believe they do know this...why else would they use radioactive sugar as the contrast to make cancer cells "light up" during an MRI?!?!)

I don't understand why doctors feel the need for us to "rethink" the raw vegan diet if KK loses too much weight as if weighing more equates to being healthier.

I Can't Change That

I have made a lot of decisions since the latest symptoms of swelling appeared: waiting it out at home, putting KK on dexamethasone, weaning her off dexamethasone, resuming IVC treatments, asking for a reduced dose of vitamin C. I have asked people to pray for God to give me wisdom and discernment as I have felt like I was literally making life and death decisions for KK. 

At the beginning of this journey, KK and I talked about how God knows the number of her days and cancer can't change that. I continually have to remind myself that God knows the number of her days and decisions I make can't change that.

Relief

After KK presented with symptoms of swelling, Dr. Rothfeld from the The Rothfeld Center suggested that I give KK dexamethasone (steroids) to reduce some of the swelling. I asked KK's team at Dana Farber if I could give her some from the supply I had on hand from last year. They said yes, so I gave her a few doses over the weekend. I didn't want KK on the steroids for long...just long enough to give her some relief. She hates how she feels when she is on them (not to mention, I'm not a fan of how I feel when she's on them). When I texted my friend Terri, she asked if the steroids prevent apoptosis. I didn't know the answer to that so I did my research. Sure enough, dexamethasone slows down apoptosis in glioblastoma cells...confirming that steroids are not a long-term solution unless they are absolutely necessary.

The team at Dana Farber also suggested Tylenol for the headaches. This reminded me that I had Celebrex on hand from last year as well. I chose to use the Celebrex instead of Tylenol since it also has anti-tumor properties.

Every time KK went to sleep, I hoped and prayed that she would wake up feeling better. After spending a restless night filled with fear on Saturday, God reminded me that it took a couple weeks from the onset of major swelling until what I perceived as apoptosis back in February. I felt an amazing sense of peace when I woke up.

By Sunday, the only symptom that remained was the right-sided weakness and a slight headache when the Celebrex wore off.

On Monday, the severity of the weakness seemed to come and go in waves -- the worst of which lasted between 30-40 minutes. I decided to bring KK to her IVC treatment on Monday as I believe we need to keep "feeding" the cancer cells so they die off. I asked for a reduced dose of vitamin C (50 grams instead of 100 grams) so as not to overwhelm KK's system. It is such a delicate balance.

Today, KK woke up with almost full use of her right arm and hand. She was even able to dress herself and go to tutoring.

Though I don't think she's quite out of the woods, KK and I are praising God for these improvements. Please keep praying for God to pop those cancer cells!

A Tale of Two Days

Yesterday, I was ready to post about how well KK has been doing. In the last week, I have had multiple people comment about how great she looks. Her energy has been up, she has been more engaged, and she just looks good. However, at the end of the day I was spent and didn't have the energy to write a blog post.

Then she woke up today.

I heard her in the bathroom early this morning and I knew something was wrong. When I got there, she had the bucket in front of her and started gagging like she was going to throw up. I asked her if she was okay. She slowly uttered something and all I understood was "arm". Her right arm just flopped by her side. She finally threw up (swelling throw up) an hour later. I hoped that this would relieve some pressure as it has in the past, but it did not. She has continued to exhibit symptoms of swelling as the day has progressed -- right arm weakness, slow speech, neck pain, her tongue is not straight when she sticks it out, hardly eating, and sleeping most of the day.

I believe this is due to cancer cells swelling because the vitamin C is doing its job. However, it is hard to hear KK say "I don't like this" as she fights back tears. I would really appreciate it if everyone would plead with God for apoptosis tonight.

The next MRI is in 20 days.

What's Your Excuse?

At summer camp last year, KK joked with one of her counselors, "I've got brain cancer. What's your excuse?"

I recently decided to take that quote and make it into a t-shirt. Thanks to the father of KK's friend Lucas who took my design idea and made it a reality.

I designed one for myself as well. It says, "I never imagined I would be an amazing brain cancer mom, but I'm killing it!" Unfortunately, I don't have a picture of it, because I ruined it after wearing it just once.

(PSA: Don't use hotel soap to try to clean a salad dressing stain or you may bleach the shirt.)

Unseen Disabilities

KK lives every day with a visual field cut. She has no peripheral vision on her right side -- a literal blind side. This field cut is something that is unseen -- both by KK and others. 

Just about two weeks ago, I had the privilege to speak at chapel at Holden Christian Academy. Before I spoke, KK and I did a little Q&A with the students. As we answered questions, I showed them how KK can't see anything on her right side. I heard the gasps...it is shocking to realize just how much she cannot see. 

Oftentimes, the loss of her peripheral vision is not a big deal. Every now and then, it means she bumps into things and later on we wonder how she got a bruise on her leg. I have learned to use my words to give KK a verbal cue when things are on her blind side. She often asks to hold my left arm so that I am on her blind side. We have adapted.

The most difficult part of having a visual field cut happens when she bumps into people. It is especially difficult because people get upset and don't understand why she would walk right into them. Today, we tried to navigate our way through a large crowd. I apologized to people that KK accidentally bumped into and tried to quickly explain that she couldn't see anything on her right. By the time we got through the crowd, KK was scared and in tears. 

I think it is time to talk to her team at Dana Farber about getting an Identification Cane to help people see this unseen disability.