Happy Adoption Day 2016!

What a difference a year makes!

Last year's Adoption Day celebration was in the ICU at Children's Hospital. We had to get permission for KK to have a bite of a cupcake since she had been "NPO" (nothing by mouth) prior to that.

This year, we celebrated by getting KK's IV Vitamin C treatment and colonic. Well, that wasn't how we wanted to celebrate, but it was better than what we were doing and where we were last year...perspective is everything! The celebration continued at The Manor Restaurant where we met up with Nannie and Grampy for dinner. There was no cupcake for KK this year, but she enjoyed every bite of her salad.

So glad she's mine...7 years and counting!

Stable

Today's MRI showed small changes (enhancements) to the tumor, though KK's team still consider it to be stable. Clinically speaking, they all think KK looks great.

MRI images from April 20, 2016 

Dr. Manley told us about 2 new clinical trials that were opening up for which KK might qualify. KK would need to be off the IV Vitamin C for 4 weeks in order to participate in either of these trials. Unfortunately, they are both in the safety phase of the clinical trial and not necessarily the efficacy phase. He didn't "push" for KK to go off IV Vitamin C or for her to be in either of these trials. I told them I would like to give the IV Vitamin C at least one more 6-8 week cycle and they agreed.

I am not surprised that there were some enhancements to the tumor area today. I expected some swelling in the cancer cells due to some changes we made to KK's protocol last week.

After the seizures in February, The Sante Center started using IV Glutathione to help protect KK's brain. While Glutathione helps protect healthy cells, it essentially slowed down the effects of the IV Vitamin C. IV Vitamin C creates a pro-oxidant environment in cancer cells creating hydrogen peroxide; Glutothione is an antioxidant removing free radicals, heavy metals and peroxides.

Relaxed and ready for the MRI

Last week, I sat down with The Sante Center and went over the timeline and patterns I have observed in KK -- noting what I believe worked and what didn't since we began the IV Vitamin C treatments. After being seizure-free for 7 weeks and headache-free for most of that time, I felt KK was ready for the Vitamin C without Glutathione. We adjusted her protocol last Monday and the IV Vitamin C essentially began working at full force again. (Of course, I second-guessed myself on the timing of these changes considering the MRI was this week.) KK has had a few days of "pressure" in her head which tells me that the IV Vitamin C is working more effectively...I just have to be diligent about making sure there is not too much pressure and swelling. It is a fine balance for sure.

The next MRI will be on June 8.

Sweet Reunion

After KK's diagnosis last year, I contacted my social worker from DCF to find out what they might need to know for her siblings in terms of health history. My social worker proceeded to tell KK's social worker what was happening and gave her our address. Among the many sweet well wishes, we received a card from KK's social worker with her current contact info. It took me almost a year, but I finally contacted her and we were able to have dinner with her tonight on our way home from New Hampshire. KK didn't remember what she looked like, but she remembered her as a kind person. It was a sweet reunion.

KK loved getting reacquainted with Ms. Lynda

Coastlands Friends

KK and I had the opportunity to meet a sweet group of people for dinner on the way home from New Hampshire tonight: Dr. Brady, Ms. Dall, and Mr. Huffman from Coastlands Consultants.

The heart of their ministry is to share Jesus through relationship. One part of Coastlands Consultants' Mentored Ministry is going into Christian schools and running "Spiritual Emphasis Weeks". This is where KK and I first met them four years ago at Holden Christian Academy. Their ministry to young people extends far beyond the one week per year they spend at each school...as evidenced tonight. They regularly read this blog to keep up-to-date with how KK is doing and faithfully pray for both of us.

If you ever want to meet a group of people who truly love God and love others, you need to meet them!

Medical Opinions

Last week, I asked KK's team at Dana Farber to write a letter for a grant I am applying for to help pay for the IV Vitamin C treatments. Here is a portion of their letter:

KK has received traditional therapy of maximum surgical resection, radiation therapy and chemotherapy. Despite these intensive therapies, KK was found to have disease progression on a surveillance MRI from January 2016. There is no known standard of curative therapy for recurrent GBM. With that knowledge, an oral chemotherapy regimen was initiated with the hope of slowing down the growth of KK's tumor and hopefully achieving extension of her life. Her devoted mother has explored alternative treatments to be given in conjunction with more traditional therapy. KK began treatment with intravenous Vitamin C in January 2016. Since KK has begun this combined treatment regimen, she has done unexpectedly well from a clinical standpoint. She has demonstrated clear clinical improvement with marked increase in her motor strength, better functional and energy status and overall improvement in her performance status. A follow-up MRI scan from March 2016 revealed that the tumor has not exhibited any further growth. ... We would support continued administration of Vitamin C.

On Friday, KK had her annual "wellness" visit with her pediatrician, Dr. Hunt. Everyone at Town Center Pediatrics was amazed at how well KK looked. Dr. Hunt asked KK if she had any pain -- specifying different areas (head, neck, stomach,...) as we have learned to do with her. KK said she had no pain. Dr. Hunt was surprised. When KK stepped out of the exam room to go to the bathroom, Dr. Hunt asked me if she really didn't have any pain or if she was just saying that. I confirmed that she really didn't have any pain.

The next MRI is on April 20... just 10 days until we have evidence and not just opinions!

Complications

We found out that one of the patients at The Sante Center passed away this week due to complications after a hospital visit. Her health was improving with the treatment she received at The Sante Center, so her death was totally unexpected.

We spent many hours sitting with this sweet woman as she and KK received treatment. KK took this news very hard; she just sobbed when she found out.

Please pray for this woman's family and for KK's heart.

One Year

It has been one year since KK was diagnosed with a Glioblastoma Multiforme Grade IV brain tumor.

When KK and I talk about the day we went to the opthamologist to figure out why KK was having double vision, we joke that Dr. Kazarian basically told us to "go to the ER, do not pass go, do not collect $200."

I am well aware of the median survival rate of those diagnosed with a GBM. I am so grateful for each and every day that we have had together this past year. We even got an "extra day" together this year (Hooray for Leap Day!).

Over the past year, I spent many days (and nights) praying over KK and whispering to her to "fight". God has given her an amazing fighting spirit. She is stronger than anyone I know...she truly is a fighter and an overcomer.

In the weeks leading up to this anniversary date, I was a bit apprehensive. My mom decided that we needed to do "something fun" and bought us tickets to see The Sound of Music in Boston. We are looking forward to finishing our first year with "Charlie" with "the sound of music".

Just try to tell me that this song doesn't remind you of KK's positive attitude...