Heading to Children's

We are heading to Children's for an emergency MRI. Prayers appreciated.

A Prayer

I was on social media tonight and one of our favorite singers posted this Scripture and read it as a prayer over her social media "friends". I have prayed this Scripture for others in the past, but it was the first time I heard it as a prayer for me. Oh, how it refreshed my soul...

We always pray that God will show you everything he wants you to do and that you may have all the wisdom and understanding that his Spirit gives. Then you will live a life that honors the Lord, and you will always please him by doing good deeds. You will come to know God even better. His glorious power will make you patient and strong enough to endure anything, and you will be truly happy.  

I pray that you will be grateful to God for letting you have part in what he has promised his people in the kingdom of light. God rescued us from the dark power of Satan and brought us into the kingdom of his dear Son, who forgives our sins and sets us free.

~ Colossians 1:9b-14 (CEV)

A Great Day

KK and Lucas in Times Square,
just a block from our hotel.

A dear family that used to attend Chapel spoke with my friend Jenna about something "fun" they could do for us (me, KK, Jenna and Lucas). They ended up paying for us to go to NYC overnight and see Anastasia on Broadway. We planned the trip for shortly after Easter since I knew I would need a little break after the Easter Egg Hunt, Palm Sunday, Good Friday, and Easter.

Unfortunately, KK wasn't doing so well physically: her vision was severely compromised and she was experiencing some torticollis reminiscent of pre-diagnosis days (hence the Keeping It Real blog post earlier this week). Throughout the day, there were many looks and nods between Jenna and I as I worried about how KK was doing. Despite all of this, KK had a great attitude. She was pretty excited to see the musical, singing along to many of the songs.

At dinner after the musical, I said aloud, "Okay, God, I am laying out my fleece. You have seven days to bring some healing and show me that we are on the right track. If I'm not, then please show me what we need to do next." Literally within seven minutes, KK was sitting straighter, holding her head up better, and her voice was getting stronger. I looked at Jenna and asked, "Do you see this?" She confirmed what I was seeing. It did my heart good. As the night went on and KK continued to do well, we just kept praising God. At one point, I reminded Jenna that about a month prior to this I had said something similar when we were all together and KK was having headaches...within an hour, KK had a "shiver" go through her and her headache went away. I laughed and said, "God, you don't have to wait for me 'to lay out my fleece' next time."

I admit that I am still apprehensive about what we will see on the MRI next week since her vision remains poor. However, as I have led KK -- at times with my voice, at other times with my hand on hers -- this week, I trust that God will continue to lead us no matter what the MRI reveals.

Keeping It Real

When I am asked how I'm doing, I often say that if KK is doing well then I am doing well.

Right now, I am not doing well.

My heart hurts.

I am struggling.

I am worried that the tumor is growing.

I am not looking forward to next week's MRI, yet I want to have it today.

I need God to restore her vision.

I need Him to take away all seizure activity.

I need her to be headache-free.

I need God to heal my baby girl.

Keeping Me On My Toes

Last week was a tough one. KK was keeping me on my prayer toes, for sure.

I started to notice that KK was holding her head to the right so we went to Dr. Brooke for an adjustment on Monday, but her alignment wasn't that far off. I also had to keep reminding her to speak clearly, because she was slurring her words. By Wednesday, I noticed that she was drooling a lot. As we were packing up to go to her appointment that afternoon, KK said her arm was off...sure enough, it was "floppy". I asked her to stick out her tongue and it deviated to the right. She was definitely having a seizure (looking back, she was probably having multiple little seizures over the last few days). I gave her a rescue med (Klonopin) and off we went to treatment.

When KK had to go to the bathroom during the IV, I went with her because the Klonopin makes her very groggy and lethargic. While in the bathroom, I noticed that the bag of solution they used for the Lipoic Acid Mineral Complex was dextrose and not saline like it had been. I asked the IV nurse about it and she said that the protocol was to change from a small bag of saline to a larger bag of dextrose between week 2 and week 3 as they up the dosage of LAMC over the course of 4 weeks. I found this intriguing because dextrose is sugar and cancer feeds on sugar...the reasoning behind using dextrose is that it will open up the cancer cells to allow more of the LAMC in.

KK was very tired on Thursday (Klonopin has an elimination half-life of 30-40 hours), but she was chatty and happy. However, KK woke up during the night on Thursday and said, "Mom, my arm feels weird." When I went into her room and turned on the light, I saw that her right arm was shaking. The seizing stopped within a minute, so I didn't give her a Klonopin.

I spent the next couple of hours asking God if this was the beginning of the end (I hate to admit that my head went to places it shouldn't have to go over the course of the week) while praying for wisdom to know what was going on and what to do next. I finally fell asleep just before dawn. When I awoke, I remembered the dextrose solution and realized that it was the only thing that was different. I asked the Rothfeld Center to use a saline solution instead of dextrose on Friday, so they did. KK's vision is still a bit off, but, thankfully, there have been no (visible) signs of seizure activity since then.

Happy Easter!

A happy Easter indeed!

Among the 30%

Here we are 2 years post-diagnosis and going strong. Though KK is by no means out of the woods, as some friends who saw her recently said, "She looks good! She looks really good!"

The fact is only 30% of people diagnosed with a Glioblastoma Multiforme Grade IV brain tumor live for 2 years post-diagnosis. As I reminded KK of this, she said, "I'm defying the devil again!"...not the odds, but the devil...gotta' love it!

In 3 1/2 weeks, we will find out what is happening inside KK's brain.

Coursing Through

I want to document what KK has been experiencing since beginning the new supplement in February. It is my hope that it can help others who might want to know what others experienced when they began using it.

One afternoon at the end of February, KK said she felt an energy going through her. I asked her to describe it and she said it felt like it started in her head and just went down her body. At one point, she said it went out through her feet; at another point, it went out through her hands.

One day at the beginning of March, KK was feeling weird off and on. During lunch, she said she felt a weird feeling in her chest and in her right hand. I went through some of my tests to see if it was a seizure, but she seemed fine. The weird feeling continued to come and go as we were at the movies. I asked KK if she wanted to go home, but she didn't want to leave. Again, I wondered if she might be having a seizure. One thing that kind of reassured me that she wasn't having a seizure was that she remembered multiple things about the movie (and one of the previews) hours later, which wouldn't normally happen if she had a seizure. Let's just pause for a moment and celebrate that she remembered details...considering her short-term memory loss!!! When we got home from the movie, she felt the weird feeling again and said, "Devil, you are not going to win!" Shortly afterwards, she said "Woo!" and told me that she felt like a negative energy left her.

That night, I tried contacting other people that used the supplement for their brain tumors to see if they experienced anything similar. One gentleman said that he remembered having strange sensations/over-sensitization and his equilibrium was a bit off when he began the supplement.

The weird energies continued to go through her the next day. I still wasn't 100% sure that she wasn't having seizures, so I asked her multiple times if she thought she needed a rescue med. She said no all day long until she finally said yes that night. I gave her one of the dissolving tablets and a half hour later she had another episode. It pretty much confirmed that these energies and weird feelings weren't seizure activity. I read that this supplement is a powerful antioxidant that can actually turn the toxins released by cancer cells as they die into energy...I began to wonder if healing was happening in KK's brain and releasing an electrical surge through her body.

Last week, KK started the IV version at the Rothfeld Center. Before we began, the IV nurse had spent time gathering information from another center that uses Lipoic Acid Mineral Complex regularly. One of the things they wanted us to know is that many patients report having blurry vision during/after their first infusions that is short-lived. I'm so glad she warned us, because KK did experience some vision issues a few hours after the first infusion on Monday. She didn't have any vision problems after the second infusion on Wednesday. However, she did have headaches on Tuesday, Wednesday and Thursday that were very concerning to me. Honestly, I was worried that the headaches were caused by tumor growth. I "laid out my fleece" with God on Thursday and said that if the headaches didn't go away in 7 days then I would contact Dana Farber to see if we could move up the MRI. Well, it didn't even take 7 hours before the headaches went away. KK felt an energy go through her and her headache was gone.