Just Say No

"Just say no" was a slogan that was part of the "war on drugs" when I was a kid.

Right now, it is what we are saying to drugs that would traditionally be used to treat a Glioblastoma brain tumor. 

As I mentioned after the last MRI, KK is no longer taking Cyclophosphamide, the low dose of chemo she has been taking for the past year. The reality is it wasn't working as evidenced by tumor growth. So all it was doing was killing platelets and white and red blood cells, as well as adding toxicity to KK's body. 

I received a call from Dana Farber last week. They said that KK has the PD-L1 mutation and qualifies for the immunotherapy clinical trial. After KK experienced vision loss due to pressure in her head last week, I am convinced that I cannot put her through a clinical trial that is designed to create an immune response that causes swelling (which could cause "seizures or worse").

KK has also been weaned off the steroids that we used to control the swelling last weekend. 

The only thing she is taking is the new supplement. (She is not receiving IVC treatments either, since IVC causes swelling...we are waiting for The Rothfeld Center to get the intravenous version of the new supplement.)

Please continue to pray. Without "treatment", Glioblastomas are known to double in size in a matter of days. I believe that God is using the new supplement to heal KK. Instead of getting worse, KK is feeling better. The headaches are gone and KK has regained peripheral and color vision. She sees "flickering" that I assume is caused by the optic nerves trying to settle. Thankfully, it doesn't seem to bother her as she has resumed normal activities and only mentions it once in a while.

In Living Color

When KK's vision started getting "darker", she said she was seeing things in black and white. On Saturday, she started seeing some colors again. It is kind of freaking her out. She says, "There are so many colors that my brain is like, 'Whoa!'." Her field of vision is widening a bit as well. I think her optic nerves will need a little more time without pressure in order to heal and figure out how to process colors correctly.

My parents came over this morning to watch KK while I went to church. When I left, KK had a headache, was holding her head and crying. I asked her what number the pain was. She said it was a "1" (probably a 4 out of 10 for most people). At that point, I knew the tears were from the steroids since she was at a "1" most of yesterday without crying. When I called home between services, KK seemed to be doing well. When I got home from church, she didn't have a headache and has remained headache-free all afternoon/evening.

There is one positive to all the new blood vessels that were formed around Charlie through the HBOT...more of the supplement is now able to go directly into the tumor! So grateful that God can use everything for good!

Common Denominator

This is a long overdue update simply because I have had trouble figuring out what to say.  So, I'll start here...

KK has not been doing well.

After the simple partial seizures, we took a break from HBOT to make sure they were under control. Throughout the week, KK had a few issues - a passing weakness in her right hand, vomiting Monday night, shivering/chills for about 30 minutes on Wednesday night. I didn't see any indication of seizure activity, so we started HBOT again on Monday.

On Tuesday evening, KK said "Oh!" I asked her what happened. She said, "Something happened in my head," but she was unable to clarify what it was. After HBOT on Wednesday, KK said that a film like a weaving pattern came over her eyes during the treatment. This happened in the past, so I didn't think anything about it. However, it got worse as the day went on and she started to have a pounding headache. Her vision became "darker" and she has no peripheral vision. I have started giving her steroids to help relieve the pressure. I cancelled all her appointments yesterday and she slept almost all day -- only getting out of bed to go to the bathroom. 

I have been praying fervently for wisdom and discernment. As I sit here and type this, I see that the common denominator is HBOT. I believe that the HBOT may be the cause of the problem. It is possible that the oxygen helped form new blood vessels, essentially feeding the tumor. 

Pray that the new supplement will be able to reverse any tumor growth safely. Pray that the progress that was made with the HBOT on KK's short-term memory will remain since we will not be continuing those treatments. Pray also for KK's emotions as she deals with the side-effects of the steroids. Finally, pray that KK's vision will be restored...if there is too much pressure on the optic nerve for too long, it is possible that the vision loss could be permanent.

Long Weekend

Last weekend was a long, exhausting weekend.

KK had a simple partial seizure on Friday afternoon. It consisted of a loss of strength in her right hand, her tongue deviated to the right, and slow speech. When we were at the Brain Tumor Clinic earlier in the week, Dr. Ulrich realized we were prescribed the wrong version of Klonopin, an oral rescue med, last February. She said the one we had would take 20-30 minutes to work and that we should have been prescribed the dissolvable version. She said she would mail us the new prescription. Since I had not received it yet, I gave KK one of the old ones. Thankfully, it worked and the seizure stopped. After contacting Dana Farber, they told me to increase her dose of Keppra.

Saturday, KK was out of it for most of the day. The Klonopin made her very lethargic. That night, when I got her up to go to the bathroom, she was having another simple partial seizure. This time, I gave her just half the Klonopin...the seizure stopped and her strength returned. 

On Sunday, she was like a zombie at church. We ended up leaving early so she could take a nap. She seemed better after the nap and we went to my parents' to watch the Super Bowl. KK had yet another simple partial seizure during the Super Bowl. I gave her another half of Klonopin. At the beginning of the third quarter as KK came out of the seizure, I said "KK is doing better; now my Patriots need to start doing better." (They did!)

The one good thing about the timing of Friday's seizure was that it happened before I started KK on the new supplement. If the seizure happened after giving her the supplement, I would have associated the seizure with it and would have stopped giving it to her.

I cancelled Hyperbaric Oxygen Therapy until we got the seizures under control. If she had a seizure in the hyperbaric chamber, it would take time to depressurize it before they could get her out. 

I have not seen any more seizures this week. She has had other issues, but thankfully no more seizures.

Alternative Peace

The Nurse Practitioner at The Rothfeld Center was able to see me today rather than waiting until tomorrow. We had a chance to go over the results of the MRI, to talk to her about my thoughts of adding another alternative treatment, and to discuss next steps. When I mentioned the new treatment, she knew exactly what I was talking about. She also told me that there is a blood test that they can do that will screen for what alternative treatments KK would be most sensitive to...including the one that KK is starting tomorrow. I immediately felt a wave of peace come over me as I realized that we don't have to grasp at straws trying to figure out which treatment option(s) will work best.

Here are a couple more things that brought me peace:

• The blood test has a 2-3 week turn around...as it so happens, I ordered 3 weeks worth of the new treatment. 
• The test is pretty costly and not covered by insurance, but God provided most of that money before I knew we would need it when I received a check from Dana Farber for a full month's rent on Tuesday. 

MRI scans

Charlie has infiltrated the right side of KK's brain. (NOTE: MRI images are inverted...left is right and right is left.)

MRI images from February 1, 2017

Crossing the Midline

The tumor has definitely crossed the mid-line. This is something that they have been watching over the last few MRIs. It was unmistakable today. It is diffuse (not solid) in the right hippocampus (which could account for some of KK's memory loss in addition to the necrosis). There is not much change on the left side.

Dana Farber is beginning a Phase I/II immunotherapy trial. There are certain markers that need to be met to qualify for this trial. I gave them permission to test her tumor tissue for these markers, but I am not sure that I will enroll KK in it if she does qualify. The idea behind immunotherapy is that they try to create an immune response so the body attacks the tumor. This often causes swelling. When the doctors said that swelling can cause "seizures or worse", I cried...I don't know if I can do that again. One thing the doctors are not doing is telling us we have to try this or that. They don't have anything they can reliably offer and say "this works". They told us that KK can come off the Cyclophosphamide (chemo) since it is no longer effective and is just adding toxicity to her body. They said that we could continue IVC and HBOT. They were very supportive and put a lot of trust in me to make the best decision for KK.

While the tumor tissue is being tested for the PD-L1 marker for the immunotherapy trial and I pray about whether KK will participate in it if she does qualify, I am going to add in another alternative treatment that I have had "in my back pocket" for a while. As we left Dana Farber at rush hour, God brought this treatment to mind and I called the company that sells it to find out more information. The thing that intrigues me is that it can be given orally (every 6 hours to maintain saturation) and/or intravenously. I will talk to the Rothfeld Center about the latter on Friday.

I will work on getting the MRI scans on the site tomorrow.