Twitching

We have the best massage therapist...ever.

KK began receiving oncology massages from Mieka last summer. Each time, she has had to focus on helping KK's muscles relax because of all her twitching. 

This week, KK went for her first massage since we started the IV Vitamin C treatments in January. Mieka was actually able to do more body work this time as KK had no twitching. It was so good to see another physical improvement.

By the way, if you live in the area and are looking for a great massage therapist, you need to see Mieka...she is amazing!

Median Survival

When KK was first diagnosed, I wanted to know what we were dealing with, but I did not want to know the prognosis or survival rate. When I looked at information on the internet, I skipped over that as quickly as possible. I already knew the life expectancy wasn't good -- KK has a classmate whose father died of a Glioblastoma just 14 months (if I'm not mistaken) post-diagnosis.

I have since learned that the median survival of patients with a Grade IV Glioblastoma Multiforme is 14.6 months.

We are approaching 12 months post-diagnosis and 14 months since the onset of symptoms (at least symptoms I knew about).

Just a handful of weeks ago, we were talking about palliative care, DNR (Do Not Resuscitate) papers, and where KK would like to die. I thank God that we are seeing improvement rather than decline in recent days.

God knows the number of KK's days and cancer can't change that...not even the most aggressive brain tumor.

Not Finished Yet

KK is making amazing progress. Each day, she is able to do everyday tasks more independently.

KK is rocking the IV Vitamin C treatments. In the beginning, she would be wiped out by the end of the treatment and often slept most of the way home. Now, she is animated throughout the treatment and is able to carry on a conversation on the way home.

We had a second visit from the Palliative Care nurse today. She said that KK's tongue is almost midline, her grip strength is equal, and she is able to hold both arms in front of her with her eyes closed. She commented that she doesn't usually see this kind of progress in 12 days.

When things looked bleak a few weeks ago and the team at Dana Farber were preparing me for the "inevitable", I kept saying, "God's not finished yet." Today, KK and I heard this song that resonated with both of us...

 

Hold on, hold on

The Lord ain't finished yet

Hold on, hold on

He'll get you through this

These are the promises

I never will forget

Pray for God's Favor

Please pray with me for God's favor to go before us with MassHealth. MassHealth is KK's supplemental insurance since she was in the care of the Department of Children and Families. Anything that is not covered by our primary insurance should be covered by MassHealth since KK has full benefits there.

I just got off the phone with a gentleman, Deion, from MassHealth's research department. At first, he didn't sound hopeful that the IV Vitamin C treatments would be covered because the treatment center does not bill insurance companies directly. However, he didn't say no. He is continuing to look into this and will get back to me early next week.

We trust that God will provide for all our needs. If that is to be through MassHealth, then pray with us for God to direct Deion's research into this matter.

Encouraged

I was so encouraged when I received this from the nurse practitioner at Dana Farber this morning:

"We were very pleased that KK looked so well last week.  That is quite a blessing!"

KK has been making great strides over the last two weeks. She has started writing with her right hand. It is still weak, so she reverts back to her left hand after a bit, but it is definite progress. She has been doing so well that Nannie and Grampy felt comfortable enough to take her for the weekend so I could speak at Lead Kids on Saturday.

Halt!

The tumor has stopped advancing...Charlie has come to a halt!

KK's team at Dana Farber were encouraged by how KK presented physically and by the results of the MRI. They said that the tumor seems stable. There were some microbleeds present that weren't there before, but they didn't seem too concerned about them. There are a number of things that could cause microbleeds: radiation, seizures,... They said that we should continue to do what we are doing.

As for the vision field testing, the opthamologist noted that there was no swelling of the cranial nerve and the loss of peripheral vision is probably tumor-related (no surprise there).

MRI images from March 2, 2016

My "un-medically-educated" thoughts...

• Glioblastomas are angry and aggressive tumors that grow exponentially faster than many other cancers. I am so grateful that there is no progression of disease in the last 6 weeks.
• My first instinct was to focus on the microbleeds and stress out about them, but I will follow Dr. Manley's lead and not worry about them. 
• I wonder if the microbleeds were caused by one of the meds KK was on (which I stopped giving her after the first set of seizures).
• The microbleeds are in the tumor. Could they be cancer cells dying off? That would be amazing!
• I see a little more distinction in the "folds" where the tumor was infiltrating compared to the January scans (though the doctors didn't think there was much difference).

Pray for the tumor to begin retreating!

Hard Conversations

When KK had her first seizures two weeks ago, her pediatrician, Dr. Hunt, visited us in the ER. She pulled me aside and asked me to think about signing DNR papers. So I wasn't surprised when I was asked to consider signing them when I met with the nurse practitioner at Dana Farber last week. I signed the DNR papers.

When KK had her second set of seizures the very next day, one of the doctors at UMass tried to delicately broach the subject. He was a bit awkward about it so I interrupted and told him I had DNR papers...I also told him I wasn't ready to give them to him yet.

At Dana Farber, I was also asked to consider whether I wanted KK to die at home or at the hospital. I wasn't prepared for that question and said that I needed to think about it. Just an hour later on our way to New Hampshire, KK (who had not been privy to the conversation at Dana Farber) brought up the subject on her own. She stated that she wants to die at home if at all possible.

KK and I met with a social worker from Notre Dame Pedi Pals (Pediatric Palliative Care) on Monday. We will meet with the nurse from Notre Dame Pedi Pals on Thursday afternoon. I didn't realize that they offered so much more than "end of life" care.

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!

Cautious

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.

A-pop-tosis

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!

Keppra

This post may be TMI for some people...you'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.

Spent

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 ~

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.