Tuesday, January 31, 2017

MRI Tomorrow

The last couple days have been hard. I have been preparing for the worst, yet trying not to go there.

I am prepared for the MRI to look worse than the one in November. The MRI in November showed either necrosis or tumor growth or both. The dramatic short-term memory loss that KK has experienced over the last couple months pretty much confirms that what they saw in November was necrosis. The problem is that the necrosis most likely worsened between November and December before we started treating it with Hyperbaric Oxygen Therapy this month. We don't have an MRI from when the short-term memory loss was at its worst, so we probably won't see any progress and will most likely see more necrosis at this MRI.

Today, I received a check from Dana Farber covering next month's rent. I felt like God sent a little gift saying, "I've got this." He continually provides for our financial needs; I know He can provide for KK's healing.

Saturday, January 28, 2017

Unexpected Benefit of HBOT

We are praising God that KK is much more chatty, her response time is getting better, and she is starting to remember a few more little things each day. We are also praising God for something we didn't expect with the Hyperbaric Oxygen Therapy...

While KK was in her colonic on Thursday, I noticed that the scar on her stomach was no longer raised. We examined the other scars on her torso from the shunt catheter and port placements and discovered that they have all flattened out. A few months ago, I wondered if there was a way to massage them to break up the scar tissue but I never followed through, so it was neat to see that they are healed. I realized that this was an unexpected benefit of the Hyperbaric Oxygen Therapy. I thought, "If God is using the HBOT to heal the scars we can see, I wonder what is happening to the radiation scars we can't see."

We showed the scar to Chris and Ruth at The Wound Care Center on Friday. They were excited as they had never seen that before since the patients they usually see have wounds that still need to close. They said KK's age is working in her favor and that healing should happen quickly.

Friday, January 27, 2017

Choosing Peace

KK's next MRI is on Wednesday and scanxiety tried to rear its ugly head this week.

When I woke KK up to go to the bathroom before I went to bed on Wednesday, we noticed that her right eye was "bugging out". As I laid down, I prayed, "God, I am choosing to sleep in peace."

The other morning, KK mentioned something about seizures. I asked her why she was thinking about seizures. She said she just shivered. I asked her what she meant. She pointed to her left side and said she just shivered on that side. In the past, her seizures have started on the right side due to the location of her tumor, so I chose to proceed with our day in peace.

On our way to IV Vitamin C treatment on Friday, KK ate breakfast in the car. About half way down the Mass Pike, she said she felt "warm" -- her signal that she is about to throw up. She pulled an emesis bag out of her med bag as I continued to drive (so thankful that we didn't hit any traffic during morning rush hour). KK explained that her stomach felt yucky and confirmed that she didn't have any pressure in her head. When we arrived at The Rothfeld Center, KK went right to the bathroom and threw up. She immediately felt better and I chose to continue her treatments in peace.

Could these indicate tumor growth? Could apoptosis be happening? Could the Hyperbaric Oxygen Therapy be a factor in all of this? I just don't know. We may have a better idea of what is going on in KK's brain after the MRI on Wednesday. What I do know is that I would much rather choose to live in God's peace than in scanxiety today.

"Therefore do not worry about tomorrow, 
for tomorrow will worry about itself. 
Each day has enough trouble of its own." 
~ Matthew 6:34

Wednesday, January 25, 2017

Comfort Plus

On this trip to Disney, we flew Delta for the first time in years (actually, I think KK has only ever flown Southwest with me). On the way to Orlando, the attendant that met us at the gate offered to move us closer to the front for KK's sake. I explained that we usually sit towards the back to be close to the bathrooms. I was astounded at how close together the rows were and how little legroom there was.

While we waited for our return flight, we sat by the desk to get a claim tag for the wheelchair from the Delta attendants when they arrived at our gate. A sweet young man named Michael that we sat near saw our brain cancer shirts and told the Delta attendants that he would like to give his first class seat to KK if I was comfortable with that. Due to her short-term memory loss, I didn't think it was a good idea for us to be separated. The Delta attendant was so touched by this man's thoughtfulness that she offered to upgrade us to Comfort Plus (between first class and coach -- with a little more legroom than coach). The young man explained to me that he just found out that his cousin, who has been fighting brain cancer, was given a couple months to live. Of course, I just wanted to share all that I have learned about the alternative treatments that have helped KK make it through a full year since her recurrence and being put on palliative care.

Monday, January 23, 2017

Vacation Recap

We began our latest trip to Disney visiting with my aunt and uncle in Merritt Island. It was a nice relaxing time before the craziness of early mornings and late nights that is Disney. We had the opportunity to serve at the House of Hope with my aunt. KK remembers having fun folding and sizing bins of clothes and the nice ladies that prayed for her. We were also able to attend their Sunday School after-Christmas Christmas party where I had the opportunity to share a bit of our story. These people have been praying for KK faithfully. Some of them have met KK and I before, but it was nice to put a face to a name for those who haven't. It was also nice to share a little bit of how God is answering their prayers.

On Saturday, we picked up our friends at the airport and headed right for Disney. It was so much fun sharing some of our favorite things about Disney with Kelly, Adeline and Clara. From a dinner show at the Hoop-Dee-Doo Musical Revue to getting picked to be in the Indiana Jones Epic Stunt Spectacular, we made the most of every minute.

A young woman that Kelly used to babysit is now a cast member (photographer) at the Magic Kingdom. We met up with her for a day and she really hooked us up! We were able to do every ride we wanted to do (plus a few that KK didn't want to do), have our own personal photographers at each event on Main Street, and even visit the talking Mickey Mouse in Magic Kingdom.

When we were booking this trip, Kelly found a great deal that included the Disney Dining Plan. She was a bit worried that KK wouldn't be able to eat anything on the plan and wondered if we should cancel it for her. I told her not to do that, because Disney knows how to do food allergies and dietary restrictions. True to form, they outdid themselves. The chefs did a great job...KK loved every meal she had and at no time did she feel like she was missing out on something.

KK's memory was doing pretty well at the beginning of the trip, but it was starting to decline by Tuesday night. Thankfully, she was still in good spirits and remembers being happy. She likes seeing all the pictures because they remind her of the fun she had.

Here is a video of one of my favorite memories:

(here is an external link to the video if it doesn't play above)

Wednesday, January 11, 2017

New Accomodations

KK has not slept in her bedroom since she had the seizures last February and maybe a handful of times since her diagnosis in April 2015. Over the past 21 months, I have asked her a few times if she was ready to sleep in her loft bed again. Her answers have ranged from "I feel like I'm going to hit my head on the ceiling" to "I'm not comfortable climbing the ladder." Fair enough -- she is taller and the right-sided weakness, though better, is still there. I began periodically looking at craigslist to see if anyone was selling a low loft bed with stairs at a reasonable price. I found one this week and showed it to KK. She was so excited that it was low enough that EMTs would be able to reach her if she had seizures again. I guess I didn't realize how the fear of having more seizures impacts how she thinks about everything.
I found "K + Jesus" engraved on the desk of her old loft bed as I disassembled it.

Friday, January 6, 2017

Diving Time

Diving at the Wound Care Center
KK seems happier and much more engaged today after yesterday's treatment.

I know I've said it before, but it bears repeating...the timing of the need for this treatment is a God-thing. I am so grateful that I didn't have to try to fit this therapy in with the other treatments and work. We left the house at 6:50 this morning for IVC, barely made it to HBOT on time, and still need to get to colonic at 4:30 (for which we will most likely be a few minutes late).

Thursday, January 5, 2017

And The Answer Is...

Mass Health approved the HBOT!

We begin treatment at St. Vincent Wound Care Center today at 2pm. 

Wednesday, January 4, 2017

For Those Who Love Cliffhangers

After hearing an automated voice say that the wait time was over 20 minutes and that I should leave a call back number (which never seems to get a call back) multiple times...

After trying to call between an appointment at Dana-Farber and HBOT at The Rothfeld Center and not getting through...

After being put on hold but hung up on instead...

After waiting on hold as long as I could on two different occasions...

I was finally able to get through to Mass Health around 4:00 this afternoon.

They received the prior authorization request dated December 29.

And their response...

...has been sent to the Wound Care Center.

I was told to contact KK's primary care physician to find out what it is.

That didn't make sense to me, but I called Dr. Hunt's office anyway.

They didn't have the response.

I believe they meant that I should contact the provider that requested the prior authorization, so I called the Wound Care Center at 4:20. I got their voicemail (even though their hours state that they are open until 4:30). I asked them to please call and let me know whether Mass Health approved or denied the prior authorization so I would know whether or not I would have to go through the appeal process with HPHC. As I hung up, I resigned myself to the fact that I have to wait until tomorrow to find out whether or not we have prior authorization.

Then my phone rang just before 5:00.

Could it be the Wound Care Center???

Alas, no, but...

...it was Mass Health.

It was Deion from the research department who has helped me before -- or at least tried to -- back in March. He asked me to explain what has been happening. As I recounted the Wound Care Center's "policies" as I understood them, he interrupted me and said that is not how it should work and that they should apply for prior authorization from both insurances at the same time. I did explain that Sherry told me she would request the prior authorization from Mass Health yesterday and that I just confirmed that Mass Health received it. He, too, was not able to tell me what their response was. He asked for the Wound Care Center's phone number. He said he would follow up with them tomorrow then get back to me...and he gave me his phone number in case I need more help.

Tuesday, January 3, 2017


I called the Wound Care Center today to ask how much it would cost if we paid for HBOT out-of-pocket. The woman I spoke with said that I would need to speak to another department about that, but her "guesstimate" was around $500.

She went on to warn me that the HBOT may not do what I want it to do. I told her that I understood this was a possibility, then I explained to her that I have been bringing KK to the soft-sided HBOT treatments and how I saw minor improvements.

We then talked about the insurance issue. For some reason, she was under the impression that I wanted her to apply for prior authorization from Harvard Pilgrim Health Care. I told her I understood that HPHC denied the prior authorization, but that I needed her to apply for prior authorization with Mass Health. She agreed to do that!

At 6:11 tonight, I received a call from Mass Health. When I answered it, I didn't hear anyone on the other end. I tried calling them back, but I got a recording that Mass Health was closed for the evening. I have no idea what that was about, but you can be sure I will be calling at 8am tomorrow.