Monday, May 1, 2017

Progression

The MR vent check showed the tumor has grown on the right side and there is lots of swelling. They are admitting her and putting her on iv steroids and making her comfortable. Please pray that she won't suffer.

Sunday, April 30, 2017

Heading to Children's

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

Friday, April 28, 2017

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)

Thursday, April 27, 2017

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.

Tuesday, April 25, 2017

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.

Tuesday, April 18, 2017

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.

Sunday, April 16, 2017

Happy Easter!

A happy Easter indeed!

Saturday, April 8, 2017

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.

Tuesday, April 4, 2017

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.

Saturday, March 25, 2017

Saying Goodbye

Over the last two years, we have met so many wonderful people who have actively cared for KK's health. The IV nurses at the two centers where KK has received vitamin C treatments have been amazing. Each of them has spent hour upon hour with us, has seen us at our best and at our worst, has answered my many questions, and has advocated for us.

A few weeks before we left the Sante Center, we had a chance to say goodbye to one of the IV nurses when she left to continue her education However, we didn't have a chance to say goodbye to the other nurse since we made the decision to leave so quickly. 

KK has not had vitamin C treatments since her vision problems, so we haven't been to The Rothfeld Center in over a month. (We plan to return next week for infusions of Lipoic Acid Mineral Complex -- the IV form of the supplement KK has been taking.) I found out that one of the IV nurses, Ms. Deb, was returning to Wisconsin at the end of March to help care for her sister who is dealing with her third cancer recurrence. I didn't want KK to miss the opportunity to say goodbye to someone that has meant so much to us. Though we didn't have an IV scheduled, we headed into Waltham on Friday to say goodbye and let her know we are praying for her and her sister.


My favorite moment with Ms. Deb occurred when the conversation in the IV room turned to KK's tumor. Ms. Deb said she wished KK never had cancer and KK responded, "If I didn't have cancer then I never would have met you."

Monday, March 20, 2017

Saturday, March 18, 2017

God Continues to Provide

God provides in so many ways. I have been amazed at how God has moved in the hearts of people to help us financially over the last 2 years, especially the last 14 months since beginning alternative treatments not covered by insurance.

About a year ago, I was told about the Catastrophic Illness in Children Relief Fund and encouraged to apply for financial help. I was unsure if we would qualify since "requests for complementary and alternative therapies that are not supported by scientific evidence will likely receive additional scrutiny and are frequently denied". Along with the application, I sent receipts for the IV Vitamin C treatments from January thru April 2016.

I didn't hear anything for almost 8 months, then I received a letter asking for more information during the time I was fighting to get HBOT treatments for KK. I was unsure how to respond to the request since so much had changed since April, so I set it aside. A few weeks later, I received a phone call from our case worker stating that our case would be heard on February 17. He asked me to send him any additional receipts from April 2016-present. He also needed me to get a letter from the insurance company stating that they didn't cover IV Vitamin C treatments. During our conversation, he repeatedly told me that they were the payer of last resort. The week of February 17 was a crazy one and our case was thankfully postponed until March 17.

I had the chance to go before the board yesterday. As our caseworker read our story aloud, I couldn't believe how emotional it was hearing what we have gone through in someone else's voice. One of the women explained that she did a little research about IV Vitamin C and that it was not uncommon. Another gentleman chimed in that it was like an adjunct therapy. After talking about how it has given KK another year when things looked so bleak, I shared that KK's quality of life was so much better than when she was on standard chemotherapy. The board then voted unanimously to approve our application for reimbursement. I was overwhelmed with gratitude...there was definitely some ugly crying going on as I tried to thank them.

I am in awe of how God continues to provide for all our financial needs! Praying for Him to provide our ultimate need for KK's healing.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
~ Ephesians 3:20-21

Saturday, March 11, 2017

Keytruda Testimonies

This morning, I sent an email to a brain tumor group asking if anyone has taken part in the Keytruda clinical trial. I received a few responses, including two that offered to talk to me by phone. Here is what I have gathered:

All of the patients saw their GBM respond well to the immunotherapy while they were on it. 3 out of the 4 have stopped the trial due to swelling and its effects. The fourth is experiencing swelling with severe side effects which they are trying to control with steroids to no avail. Effects of swelling have included things like seizures and loss of mobility. Those that stopped treatment had subsequent tumor growth/recurrence.

This drug still worries me...as KK says, "Drugs can help you, kill you, or worse." Keytruda may help reduce the tumor load, but I'm still worried about the latter two.

Wednesday, March 8, 2017

23 Months!!!


KK is living and enjoying life 23 months post-diagnosis! She says she's going to set a record for the longest living kid with a GBM.

I am so proud of how she has taken everything in stride throughout this journey. She makes me laugh when she says, "At least I'm not dead!" when new challenges arise. When I think things are taking a turn for the worse, she makes me out to be a liar because God is not finished with her yet!

Tuesday, March 7, 2017

Immunotherapy Clinical Trial

I met with KK's neuro-oncologist to discuss whether or not KK will participate in the immunotherapy clinical trial using the drug Keytruda by Merck.

PD-L1 is a protein that is expressed by KK's tumor and Keytruda is a PD-L1 inhibitor. I read the information that Dana Farber gave me about the trial and I tried to find information about brain tumor patients that have used immunotherapy, but I wasn't able to find much. Most of the information, including the packet from Dana Farber, focused on lung cancer and melanoma patients for which Keytruda has been approved. I was not convinced that this is for KK.

After sharing with Dr. Manley that I was leaning towards not participating, he asked what he could say to change my mind. I told him, "You can take back what you said about it causing an immune response which causes swelling which could cause seizures or worse." He said he couldn't do that and I told him that I appreciate that he was honest enough to tell me in the first place. He tried to assure me that if the immune response caused too much swelling that they would control it with steroids (which act as an immune suppressor...does anyone else see the irony???). At that point, KK chimed in that she doesn't like steroids and said, "Drugs can help you, kill you, or worse." Dr. Manley also told me he isn't too worried about the swelling since he doesn't believe there is as much tumor load as I think there is...he believes there is more necrosis than tumor.

They are holding a spot for KK on the clinical trial, so they would like a response as soon as possible (by the end of the week if possible). I asked him for information about any GBM patients, adults or children, that have used Keytruda or similar immunotherapy, so I can make a more informed decision. I would appreciate continued prayers for wisdom.