Saturday, March 25, 2017

Saying Goodbye

Over the last two years, we have met so many wonderful people who have actively cared for KK's health. The IV nurses at the two centers where KK has received vitamin C treatments have been amazing. Each of them has spent hour upon hour with us, has seen us at our best and at our worst, has answered my many questions, and has advocated for us.

A few weeks before we left the Sante Center, we had a chance to say goodbye to one of the IV nurses when she left to continue her education However, we didn't have a chance to say goodbye to the other nurse since we made the decision to leave so quickly. 

KK has not had vitamin C treatments since her vision problems, so we haven't been to The Rothfeld Center in over a month. (We plan to return next week for infusions of Lipoic Acid Mineral Complex -- the IV form of the supplement KK has been taking.) I found out that one of the IV nurses, Ms. Deb, was returning to Wisconsin at the end of March to help care for her sister who is dealing with her third cancer recurrence. I didn't want KK to miss the opportunity to say goodbye to someone that has meant so much to us. Though we didn't have an IV scheduled, we headed into Waltham on Friday to say goodbye and let her know we are praying for her and her sister.

My favorite moment with Ms. Deb occurred when the conversation in the IV room turned to KK's tumor. Ms. Deb said she wished KK never had cancer and KK responded, "If I didn't have cancer then I never would have met you."

Monday, March 20, 2017

Saturday, March 18, 2017

God Continues to Provide

God provides in so many ways. I have been amazed at how God has moved in the hearts of people to help us financially over the last 2 years, especially the last 14 months since beginning alternative treatments not covered by insurance.

About a year ago, I was told about the Catastrophic Illness in Children Relief Fund and encouraged to apply for financial help. I was unsure if we would qualify since "requests for complementary and alternative therapies that are not supported by scientific evidence will likely receive additional scrutiny and are frequently denied". Along with the application, I sent receipts for the IV Vitamin C treatments from January thru April 2016.

I didn't hear anything for almost 8 months, then I received a letter asking for more information during the time I was fighting to get HBOT treatments for KK. I was unsure how to respond to the request since so much had changed since April, so I set it aside. A few weeks later, I received a phone call from our case worker stating that our case would be heard on February 17. He asked me to send him any additional receipts from April 2016-present. He also needed me to get a letter from the insurance company stating that they didn't cover IV Vitamin C treatments. During our conversation, he repeatedly told me that they were the payer of last resort. The week of February 17 was a crazy one and our case was thankfully postponed until March 17.

I had the chance to go before the board yesterday. As our caseworker read our story aloud, I couldn't believe how emotional it was hearing what we have gone through in someone else's voice. One of the women explained that she did a little research about IV Vitamin C and that it was not uncommon. Another gentleman chimed in that it was like an adjunct therapy. After talking about how it has given KK another year when things looked so bleak, I shared that KK's quality of life was so much better than when she was on standard chemotherapy. The board then voted unanimously to approve our application for reimbursement. I was overwhelmed with gratitude...there was definitely some ugly crying going on as I tried to thank them.

I am in awe of how God continues to provide for all our financial needs! Praying for Him to provide our ultimate need for KK's healing.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
~ Ephesians 3:20-21

Saturday, March 11, 2017

Keytruda Testimonies

This morning, I sent an email to a brain tumor group asking if anyone has taken part in the Keytruda clinical trial. I received a few responses, including two that offered to talk to me by phone. Here is what I have gathered:

All of the patients saw their GBM respond well to the immunotherapy while they were on it. 3 out of the 4 have stopped the trial due to swelling and its effects. The fourth is experiencing swelling with severe side effects which they are trying to control with steroids to no avail. Effects of swelling have included things like seizures and loss of mobility. Those that stopped treatment had subsequent tumor growth/recurrence.

This drug still worries KK says, "Drugs can help you, kill you, or worse." Keytruda may help reduce the tumor load, but I'm still worried about the latter two.

Wednesday, March 8, 2017

23 Months!!!

KK is living and enjoying life 23 months post-diagnosis! She says she's going to set a record for the longest living kid with a GBM.

I am so proud of how she has taken everything in stride throughout this journey. She makes me laugh when she says, "At least I'm not dead!" when new challenges arise. When I think things are taking a turn for the worse, she makes me out to be a liar because God is not finished with her yet!

Tuesday, March 7, 2017

Immunotherapy Clinical Trial

I met with KK's neuro-oncologist to discuss whether or not KK will participate in the immunotherapy clinical trial using the drug Keytruda by Merck.

PD-L1 is a protein that is expressed by KK's tumor and Keytruda is a PD-L1 inhibitor. I read the information that Dana Farber gave me about the trial and I tried to find information about brain tumor patients that have used immunotherapy, but I wasn't able to find much. Most of the information, including the packet from Dana Farber, focused on lung cancer and melanoma patients for which Keytruda has been approved. I was not convinced that this is for KK.

After sharing with Dr. Manley that I was leaning towards not participating, he asked what he could say to change my mind. I told him, "You can take back what you said about it causing an immune response which causes swelling which could cause seizures or worse." He said he couldn't do that and I told him that I appreciate that he was honest enough to tell me in the first place. He tried to assure me that if the immune response caused too much swelling that they would control it with steroids (which act as an immune suppressor...does anyone else see the irony???). At that point, KK chimed in that she doesn't like steroids and said, "Drugs can help you, kill you, or worse." Dr. Manley also told me he isn't too worried about the swelling since he doesn't believe there is as much tumor load as I think there is...he believes there is more necrosis than tumor.

They are holding a spot for KK on the clinical trial, so they would like a response as soon as possible (by the end of the week if possible). I asked him for information about any GBM patients, adults or children, that have used Keytruda or similar immunotherapy, so I can make a more informed decision. I would appreciate continued prayers for wisdom.

Saturday, March 4, 2017


Vision Testing:
KK's team at Dana Farber scheduled an urgent appointment with Ophthalmology after her vision problems 2 weeks ago. The earliest "urgent" appointment available was March 1. Honestly, I didn't think the appointment was all that necessary. I was pretty sure that the problem was due to pressure on the optic nerves and all they would do is have KK take steroids to reduce the swelling (which we did).

By the time March 1 rolled around, KK's peripheral and color vision had returned and all she saw was flickering once in a while. The results of the tests revealed that her vision had not changed since her last exam. In addition, there were no grey areas which would have been indicative of nerve damage.

Supplement Sensitivity Testing:
The blood test to find out what alternative treatments KK would be most sensitive to does not work for brain tumors. We will need to send a sample of the tumor tissue to the lab. I will try to get a sample from UMass where KK had her first resection since Dana Farber continues to use the tissue taken from the second resection at Children's for clinical trial testing.