Wednesday, February 24, 2016

A Sneeze...A Seizure...Apoptosis

After having a pretty good day yesterday, KK sneezed just as she was sitting down to go to the bathroom. I got a tissue to help her wipe her nose and she pulled back from me. I told her I was just trying to help her. She leaned in for me to help, but she seemed different than she did just before she sneezed. I asked her to talk to me. She said "Hello" in a very low, drawn out voice -- a voice I now associate with seizures. She finished going to the bathroom and I helped her stand up. Then, just like that, she started talking normally again.

So many questions went through my head: Did a sneeze cause a seizure? Was it a seizure? Did the pressure from the sneeze cause a few cancer cells to "pop" (apoptosis)?

I admitted to KK that I was probably going to have a hard time sleeping that night, because I was going to worry that she would have another seizure. She told me that I could wake her up "every hour, on the hour" to make sure she was okay. We both prayed for peace. I checked on her quite a few times before I went to bed...thankfully, I was able to sleep soundly once I was in bed.

We saw great improvements in KK today. I believe the answer to the questions I had last night is that the pressure from the sneeze caused a few cancer cells to die off quickly causing a small electrical storm in KK's brain. She was able to lift her right arm above her head, use both arms to hug people, walk more steadily, stick her tongue out straighter (her tongue had recently started shifting to the right), and her voice was clear and strong all day long...even when she was exhausted at the end of the day.

I am so grateful that God is answering our prayers for apoptosis!

Tuesday, February 23, 2016


When we were in the Emergency Room at UMass University Campus on Saturday, one of the doctors mentioned transferring KK to Children's. I didn't think it was necessary to go to Children's since I assumed it would be the same as the previous week: multiple teams checking her out, figuring out the situation with the anti-seizure medication, then discharging us. So, I opted to stay at UMass.

Things didn't quite go as I planned. They were much more cautious. I forgot to take into consideration that the doctors at UMass don't know me as well as the team at Children's/Dana Farber. They admitted KK overnight to give her the Keppra intravenously. In fact, they wanted to keep her a second night to monitor how she would do taking the liquid Keppra orally. I told them if they did so, then they would need to discharge KK at 7am on Monday so we could be in New Hampshire for her Vitamin C treatment at 9. They didn't think that would be possible, so they chose to discharge us at 10pm on Sunday.

Keppra...Part 2

The responses I received from the doctors about seeing the undigested Keppra pill were a bit frustrating. The one that I thought was the most ridiculous was that the colonics are speeding up motility and that is why it didn't get absorbed...the pill was in KK's system for 20 hours and it was completely in tact.

I truly believe that God went before us on this one! If I had not seen the pill on Friday, we would have assumed KK was having a breakthrough seizure, upped the dosage of Keppra, and never changed the form.

Saturday, February 20, 2016


I need everyone to start praying for apoptosis, cell death, of the cancer cells in KK's brain. Essentially what I believe is happening is the vitamin C is being absorbed into the cancer cells creating a pro-oxidant (think hydrogen peroxide) environment. The result is the cancer cells begin to swell until they "pop" or die. I believe this is the swelling that is causing havoc in KK. Unfortunately, we don't know how long it will take or how much they will swell before they "pop". Please pray for a-pop-tosis to happen quickly!


This post may be TMI for some've been warned.

Each time KK receives an infusion of IV Vitamin C, she receives a colonic (enema) to clean out her gut. During the colonic yesterday, the nurse stopped something from going down the drain and asked me to take a look at it. It was a whole, undigested pill of Keppra (the anti-seizure medicine).  KK's body is simply not digesting them, so they are not doing what we need them to do.

I will be asking the doctors for a liquid form of Keppra today.

Multiple Seizures

KK had multiple seizures this morning and we are back at UMass. Please pray.

Wednesday, February 17, 2016


I apologize for not posting sooner. I know a lot of you have been checking in to see the latest update on KK. I have just been physically and emotionally spent.

For those that are wondering, we are continuing IV Vitamin C treatments in NH.

It has been hard seeing KK struggle since the seizures. Yesterday, I emailed the following to her team at Dana Farber: her balance is off, her speech is slow, she is having trouble finding words at times, she has no use of her right arm, and she has been drooling. I cried as I wondered if the symptoms were progression of disease or effects from the seizure. 

I am nervous that KK will have another seizure and I won't hear her. I usually run the washer and dryer as well as the dishwasher after KK goes to bed, but I can't hear her from the living room when I do that. 

KK got out of bed on Saturday morning and headed to the bathroom. I bolted out of bed when I heard her and got to the bathroom just as she fell. She is so independent that it didn't even dawn on her that she needed help.

This morning, KK said, "I fear dying, I know everyone dies at some time, but I want to live." Then, in the very next breath, she verbalized her trust that, "God has a plan for my life."

Today, I was so grateful to see small improvements: she did great at tutoring with Ms. Jenna, her right arm is slightly better, and she is doing a few everyday tasks more independently. 

Thank you for praying and for caring. I seem to be on the verge of tears every third or fourth moment instead of every moment this evening.

But those who hope in the Lord will renew their strength.
~ Isaiah 40:31 ~

Friday, February 12, 2016

Home Sweet Home

KK and I are going home. We have a scheduled clinic day for next Friday, so we will be back soon enough. They decided an MRI wasn't necessary after all. They don't expect that it will be much different than the one on January 20 and the anti-angiogenic protocol hasn't had enough time to work anyway. They are sending us home with seizure meds and rescue meds.


KK woke up around 9:15, talking and able to see. She is still having a little trouble with short-term memory and is a bit confused, but she is in good spirits.

We are still waiting on an MRI.


Quick update...

We were transported by ambulance to Children's last night. We spent the night in the emergency department because they had no available beds. KK is irritable, uncooperative, and only wants to sleep. They are waiting for her to become more cooperative or for sedation before she can have an MRI.

Thursday, February 11, 2016


KK had two seizures tonight. She was brought by ambulance to UMass. She is unable to see and has very short-term memory. We are awaiting the CT results. If there isn't anything emergent, she will be transported to Children's.

Friday, February 5, 2016

Snowed In

The clinic called this morning to see if we could come in at 11am instead of 2pm, because they had a cancellation. I received a text earlier that the group I was supposed to meet at church had cancelled, so we took the earlier appointment time.

I knew it would be slow-going due to the snow, so we headed out the door at 9:15 to give ourselves "plenty of time". Ha! What normally takes 75 minutes, ended up taking 2 hours and 35 minutes. I decided that if it was still snowing by the time KK finished the infusion that we would get a hotel room for the night knowing that we had to be back early Saturday morning anyway. I mentioned my plans to the staff when we arrived and the receptionist called a nearby inn to get a discounted rate for us.

We are now hunkered down in New Hampshire for the night. It made my mom happy to know we weren't going to drive in the snow twice in one day (one time was too many times for her). It made me happy to know we don't have to get up super early tomorrow to drive to NH.

Tuesday, February 2, 2016

Scheduling the Next MRI

I received a voicemail from Dana Farber yesterday to schedule KK's next MRI.

Before returning the call, I looked at the calendar and took a deep breath.

At the meeting with KK's team, we talked about having an MRI every 8 weeks instead of every 12. I counted out the weeks from the last MRI and figured that they would schedule the next one on March 16. I then counted out the weeks for clinic days (which should be every 3 weeks) and figured out that those would be on March 4 and 25. I noted that KK's visual field testing is scheduled for March 2 and figured that I need to ask if we can move the March 4 clinic day to the same day.

When I spoke with Dana Farber today, they noted the visual field testing on March 2 and scheduled the MRI and Brain Tumor Clinic for the same day. Not only does this save us two more trips into Boston, it also saves us two more weeks of waiting for the next MRI!