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.

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.

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

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.

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)

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.

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).

And The Answer Is...

Mass Health approved the HBOT!

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

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.

Favor

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.

You Take Two Steps Forward...

...and three steps back on a journey of a thousand miles


These words are from a song by Steven Curtis Chapman that has been on the "Charlie Playlist" for a while. Today, these two lines have been echoing through my mind.

I called Mass Health this afternoon to check on the status of the fax. I was told by the representative and her supervisor that the denial letter from Harvard Pilgrim Health Care would not be enough. The provider has to apply for prior authorization. So I called The Wound Care Center to plead with them to apply for prior authorization with Mass Health. Unfortunately, they were already closed, so I left a message. I have no idea if they will understand a word of the message since I was crying the whole time.

I believe God has led me to this treatment for KK. I so need Him to finish what He started.


Here are the rest of the lyrics from the song "Finish What He Started":

You take two steps forward and three steps back
On a journey of a thousand miles
And you cry and you pray
But you know at this pace you never will arrive
Well I know in your heart you believed from the start
God had a purpose He knit you together for
But life has pulled at the seams
And you’re unraveling
And you can’t hold it together anymore

But God will, He will finish what He started
No thread will be left unwoven
Nothing will be left undone
Every plan and every purpose
That He has will be accomplished
And God will finish what He’s begun

And it may feel like 40 long days in a hard driving rain
Or 40 years in a dry desert sand
But when He’s finished we will SEE
A beautiful tapestry
And know that nothing has been wasted in the end

Oh, and God will, He will finish what He started
No thread will be unwoven
Nothing will be left undone
Every plan and every purpose
That He has will be accomplished
And God will finish what He’s begun

And we’ll stand as the ones completed
By the miracle of His love
We’ll sing of His goodness and sing to His glory
As we tell the story of how

God has, He has finished what He’s started
Not a thread will be unwoven
And nothing will be left undone
Every plan and every purpose
That He has will be accomplished
And God will finish what He’s begun
I know that God will finish what He’s begun 

Not It!

I called the "direct line" to the Enrollment Center this morning at exactly 8:45 and got through right away. In fact, when the representative first answered, I thought she was a recording and had to verify that I was speaking with a real person. After explaining our plight, she put me on hold while she did a little research. She came back on the phone 3 times to verify information. Finally, she said that this was not an issue for the enrollement and eligibility center. I told her I didn't think so either, but 2 different representatives directed me to that office. She thought it was a matter for the Billing Department. I tried to explain that KK had not received treatment yet and didn't think billing was the right department either. She put in a request for them to call me anyway. She also suggested that I could call customer service again, so I did. The next representative I spoke with said that this was an issue for the Health Insurance Processing Center and I thought, "Ahh, that sounds right!" She gave me the fax number and it was the same number that was given to me last night "after hours". I asked how I could verify that they receive the fax and she said I could call back in 24-48 hours and it should be in their system.

I will call again tomorrow...

HBOT Insurance Update

Here is the latest on where we are at to get HBOT insurance approval...

Last Thursday, the medical director of The Wound Care Center at St. Vincent Hospital approved KK's case and information was sent for prior authorization to our primary health insurance, Harvard Pilgrim Health Care.

HPHC was closed on Monday for the holiday, so I did a google search while I waited not-so-patiently to see if I could find out whether or not HPHC covered HBOT. I found that some insurance companies do cover HBOT for radiation necrosis, but HPHC does not. So when I spoke with a representative on Tuesday, I heard what I already knew: HBOT does not need prior authorization as long as it is for certain diagnoses. She did say that the provider should have received a reply from them...though she did not tell me whether it was approved or denied.

I called The Wound Care Center and they said it was denied. I asked if they had heard anything from KK's supplemental insurance, Mass Health, and they said they did not.

So I made more calls.

First, I left a call back request with Mass Health.

In the meantime, I called HPHC to see if there was any way they would repeal their decision. They said that the provider would need to call the provider line and ask for a peer-to-peer review; if it was still denied then I could appeal the decision (which could take up to 30 calendar days).

Instead of waiting for Mass Health to call me back, I called them again. After explaining our case, the representative said that it should be approved if the provider applies for prior authorization.

I called The Wound Care Center back and explained to them all that I had learned. I was told that the provider does not call the insurance company -- that the insurance company calls them to set up a peer-to-peer review. I was also told that it is not their policy to apply for prior authorization from a secondary insurance company. She would not listen to anything I said. I was so frustrated.

I called HPHC and told them that the provider would not call the provider line for a peer-to-peer review, so the representative immediately mailed an appeal application to me.

I then called Mass Health again and cried as I tried to explain the situation. The representative was so helpful and set up a conference call with HPHC to get a copy of the denial letter. After being on the phone for over an hour (the first 25 minutes of that was spent waiting to speak to a representative), I felt like we were making headway when my cell phone dropped the call just as we connected to the HPHC representative.

Once my signal was strong again, I knew I would never get the same representative at Mass Health, so I decided to call HPHC now that I knew I needed a copy of the denial letter. The representative said that he didn't have that, but he offered to call The Wound Care Center to get a copy of it. He just needed me to get a fax number so he could send then send it to Mass Health.

So I called Mass Health again. After waiting for a representative for about 20 minutes, my phone died. As soon as I got home, I called from a fully charged landline. When I connected once again with a representative, she told me that I needed the enrollment center. I asked if I could give her my number in case we got cut off. She said they can't make outgoing calls, but she did give me the number to call the "direct line" in case I got cut off before transferring me.

Around 4:45, after being on hold for about 35 minutes, a recording said that call volume was high and that I should call back between 8:45 and 5:00 tomorrow then hung up. I called Mass Health back and finally got a representative again around 5:20. He also told me that I needed the enrollment center. I asked if he could at least give me a fax number. He said the enrollment center might want me to send it to a different fax. I conceded that, but I asked for the one he had so I could at least do something tonight and assured him I would call the enrollment center at 8:45 tomorrow.

By the time I called HPHC back, the representative that had the denial letter was gone for the night. Thankfully, he left extensive notes for the next representative and stated that he would fax the letter to Mass Health at 8am tomorrow.

I am praying that the fax will make it to the right place between 8:00 and 8:45 tomorrow morning and we will get the approval we need for KK to start HBOT at The Wound Care Center.

Hyperfocus, Confusion, and Sundowning

The positive effects from the HBOT treatment on Thursday lasted about 24 hours. Since then, it has been like living with a 14-year-old Alzheimer's patient.

Before church on Christmas Sunday, we transformed the futon bed where KK has been sleeping into a couch so we would be able to open presents by the tree with Nannie and Grampy afterwards. When she got home from church, KK put her stuff in the room like she normally would. I explained to her that we needed to clear the space so we could all sit down and that she would need to put her stuff in the living room. While we were opening presents, KK became hyperfocused on where her Kindle was (which I reminded her multiple times was in the pink bag that she put in the living room) and wasn't able to focus on the present (pun totally intended).

After we opened all the gifts and ate lunch, Nannie and Grampy went home and I made KK take a nap on the futon couch. KK woke up very confused and just cried...I assume it was due to the fact that the room was different than she was used to.

KK seems pretty good when she wakes up in the morning -- sweet, but forgetful. However, by mid-afternoon, KK becomes much more agitated -- nervous and frustrated, not in an angry or mean way -- that she can't remember something and somber when she is not engaged in conversation.

Thankfully, we are back at The Rothfeld Center in Plymouth Tuesday, Wednesday, and Thursday this week. Keep praying that the insurance stuff will get sorted out so we can begin the more effective treatments at The Wound Care Center at St. Vincent Hospital.

HBOT Prayers

I already see improvements in KK's memory! I thought for sure it would take a few treatments before we would see any results. However, KK was able to answer multiple questions about the experience that I know she would not have been able to answer before the treatment. Is her memory perfect? Far from it...but she is remembering!

• On our way home, I told KK the name of the IV nurse (Tiana) that I met while she was in the chamber and she remembered it 45 minutes later. 
• I asked her what the color of the chamber was and she said white. I agreed that the inside was white, then told her that the outside was blue. When I asked again 30 minutes later, she remembered both colors. 
• The Reiningers gave us a tin of cookies today. I ate one of them when we got in the car after the treatment and I was intrigued by how simple and yummy one kind was and explained it to KK. I later asked her if she remembered the kind of cookie Ms. Evan made and she remembered that they had chocolate and peanut butter.  
• At home, I was still praising God and saying, "Yippie, Jesus!" KK said, "What?" I asked, "Do you know why I am praising God?" and KK said, "Because I had the Hyperbaric Oxygen treatment and I am remembering things." (Just the fact that she was able to remember that she remembered things is huge!)

Here are our prayers for the Hyperbaric Oxygen Therapy...

Primary:

• This therapy will halt and heal the necrosis.
• In healing the necrosis, her short-term memory loss will be reversed.

Secondary:

• Her peripheral vision would be restored.
• The right-sided weakness would improve.

Ultimately:

• "Charlie" will be defeated!

All of the above are possible with HBOT.  Please pray with us for God to use this therapy in mighty ways!