Friday, December 30, 2016

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 

Thursday, December 29, 2016

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...

Wednesday, December 28, 2016

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.

Tuesday, December 27, 2016

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.

Friday, December 23, 2016

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...


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


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


  • "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!

Thursday, December 22, 2016

Dory's First Dive

On Sunday, I asked the third thru fifth graders at church to pray for KK. After I explained what was happening with her short-term memory, one of the kids said, "So, she's like Dory" (of Finding Nemo and Finding Dory fame). I was like, "Exactly!"

In terms of the Hyperbaric Oxygen Therapy to help KK's short-term memory loss, there was a little confusion getting the appropriate documentation to St. Vincent's Wound Care Center. They received everything from Dana Farber, but we didn't realize that the MRI reports that state "necrosis" (the buzzword they were looking for) needed to come from Children's Hospital. They finally received the appropriate documentation and the medical director at the Wound Care Center approved KK for Hyperbaric Oxygen Therapy today. They sent the paperwork to insurance for approval. Once it is approved, KK will be able to start "diving" there.

In the meantime, the Rothfeld Center's Plymouth location has a soft-sided hyperbaric chamber that KK began using today. The PSI and the depth of the "dives" are not as good as the chambers at St. Vincent Hospital, but they are certainly better than nothing. If I had known it was going to take so long to get paperwork to the insurance let alone insurance approval, I would have started bringing her to Plymouth last week.

Dory's First Dive

Friday, December 16, 2016

Sweet Dreams

When you're literally living in the moment, you might as well make the most of those falling asleep with a Christmas tree as your night light!
Sweet dreams, baby girl!

Tuesday, December 13, 2016

50 First Dates

If you have seen the movie 50 First Dates*, you have pretty much seen my life right now. Picture it:

As we enter the lobby of a new hospital, KK remarks, "Wow! It looks like a grand hotel." The doctor gives us orders for a chest x-ray, so we make our way downstairs. As we re-enter the lobby, she says, "Wow! It looks like a grand hotel." As we enter the lobby on our way out of the hospital, she says, "Wow! It looks like a grand hotel." (At least she's consistent!)
KK's short-term memory loss has increased significantly since Wednesday of last week. As I look back over the last couple months, I can see how it has progressively gotten worse (hind sight is 20/20). This is most likely due to radiation necrosis (as KK said today, "Something that is supposed to cure us can have bad side-effects. It is a mixed blessing."). I knew this was a possibility, especially after the last MRI showed necrosis. As I researched treatments that might help radiation necrosis, Hyperbaric Oxygen Therapy (HBOT) seemed like the most promising option. In fact, I asked The Rothfeld Center about the HBOT that they offer at their Plymouth location just two weeks ago.

When my mom confirmed what I had been seeing on Saturday, I emailed KK's team at Dana Farber and The Rothfeld Center about the short-term memory loss and asked about HBOT. I found that Mass Eye and Ear in Boston has a HBOT center and was willing to drive there every day if insurance would pay for it. Otherwise, I would bring KK to The Rothfeld Center's Plymouth location (I figured that if I have to pay for it then at least we would be able to do HBOT and IVC in one appointment). On Monday, I told the woman at the center where KK receives her colonics about KK's dramatic short-term memory loss and how I wanted to pursue HBOT. She informed me that St. Vincent Hospital in Worcester (less than a 10 minute drive from our home) has 4 hyperbaric chambers. This morning, I received an email from KK's team at Dana Farber consenting that I could pursue HBOT. I called the Wound Care Center at St. Vincent's at 8am and they said we could meet with a physician at 11am (hence the visit to a new hospital this morning). As soon as insurance approves the treatment, we will be able to start treatment!

HBOT will consist of 90-minute treatments every weekday for a minimum of 30 treatments. The timing is a God-thing, since I will be taking my Sabbatical in January and won't have to worry about how to work around more doctors appointments.

Here is some information about Hyperbaric Oxygen Treatment and radiation necrosis:

* I am neither endorsing nor recommending this movie (it is pretty crude), just admitting that it is what my life is like right now.

Saturday, December 10, 2016


I am always asking KK questions...

  • "How are you feeling?"
  • "What am I seeing?"
  • "How is your head?"
  • "Any pressure?"

Lately, I feel like I am constantly asking, "Do you know the answer to that question?" Why? Because KK will ask a question, I will answer, then KK will ask the same question again a few minutes later.

I remember she used to ask questions like that all the time. At the time, I figured she wasn't listening to the person's response. Now, I wonder if she is dealing with short-term memory loss. What used to be a simple lesson in being a good listener is no longer so simple.

A brain tumor sure does complicate things.

Thursday, December 8, 2016

Twenty Months

I just want to celebrate today...KK is now 20 months post-diagnosis!

At this time last year, we were celebrating the Christmas season, but I was struggling with anticipatory grief. I am so grateful to celebrate another Christmas with my girl!

Monday, December 5, 2016


When KK does something that she hasn't done in a while, we talk about how good it feels to do something "normal".

Tonight, I did something I haven't done in a while...her hair! I am so out of practice (and it shows), but it felt good to do something "normal".