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.