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...

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!

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 moments...like 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

Questions

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

Normal


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".

Saturday, November 26, 2016

Winner Winner, Chicken Dinner!

It was a HAPPY Thanksgiving giving thanks for another year with this girl!
KK enjoyed eating meat for the first time in more than 10 months. Who knew that a chicken leg could make a girl so happy?! Now it's back to a vegan diet. We are praying for NED (No Evidence of Disease) soon, so she doesn't have to wait until next Thanksgiving for her next piece of meat.

Saturday, November 19, 2016

Realizations

At Catalyst Atlanta
with our new friend Emily

To realize that there are people all over the world that pray for KK and I regularly is comforting.

To realize that someone we never met wants to bless our family through a "Giving Tree" at their workplace is a blessing.

To realize that God brings us to mind when two free tickets become available to a national conference is mind-blowing.

To realize that some people are inspired by our story is humbling.

To realize that God has been so very good to us...there are no words.
Dinner with the Coastlands Consultants
(photo taken from their November update)

Wednesday, November 9, 2016

Best Grandparents Ever

The staff at Chapel have been planning a retreat for a while now. It was originally scheduled for the end of October, but had to be postponed until this week. After KK fainted and my parents had to call 911 on Sunday, I thought for sure that a lack of childcare would cause the retreat to be cancelled or at least postponed again. However, my parents were still willing to take KK overnight. They are amazing and I'm so grateful for their help. Best.Grandparents.Ever.

Sunday, November 6, 2016

Another Ambulance Ride

KK spent the night at my parents' house last night. While she was taking a bath this morning, she told my mom that she felt "weird" and wanted to lay down. When she got out of the tub, she fainted...thankfully, my mom was right there to help her to the floor. My dad called 911, then they called me at church. KK was talking well (even though she was scared) which put me at ease. I was still on the phone when the ambulance arrived at my parents' house. I heard KK tell them that she was out of it the last time she had an ambulance ride. The paramedic took KK's blood pressure and it was really low (my mom thinks the diastolic number was 20-something). They brought her to the ER in Leominster where I arrived shortly afterwards. KK sounded and looked good though tired and weak. Her blood pressure was on the low side of normal. They had trouble drawing blood through an IV and through her port. After they hung a bag of fluids through the IV, they were able to draw blood through her port. Just a few minutes later, KK started to perk up and her blood pressure normalized. It was determined that she was dehydrated.

A funny side note: I told my parents that I thought KK was just dehydrated just before they came in with the bag of fluids...not five minutes later, the nurse came in with the fluids and said the same exact thing. I really should have some kind of medical degree by the time this journey ends.

Wednesday, November 2, 2016

Inconclusive

The results from today's MRI are inconclusive.

KK's team at Dana Farber were very concerned when they first saw KK's scans as there are a lot of changes...a crazy amount of "flair". The oncologists feared tumor progression; the radiologists believed it is either necrosis or stroke. By the time the team talked to us, they were leaning towards necrosis or stroke and did not consider the MRI "bad" (especially seeing how great KK presents clinically). They were waiting for another radiologist to read the scans. They did think a stroke might explain what happened three weeks ago. We will talk again once they receive the radiologist's report.
MRI images from November 2, 2016
One option that they don't take into consideration is that this could be swelling from the vitamin C, as well as debris from cells that have "popped" or died off. I have emailed the doctor at Kansas University Medical Center who has done clinical trials with IVC to see if she might help me understand what the effects of IVC might look like on an MRI.

I have an overwhelming sense of peace about these "inconclusive" results.

"You will keep in perfect peace him whose mind is steadfast, because he trusts in you."
~ Isaiah 26:3

* UPDATE: The dramatic short-term memory loss that presented in December pretty much confirms radiation necrosis.

Monday, October 31, 2016

Choosing to Trust

Here is the link to yesterday's sermon where KK and I were able to share how we choose to trust God through this journey.

Saturday, October 29, 2016

Oh My Soul



KK and I are sharing our story at church tomorrow, talking about...

  • choosing to trust God even though we have questions
  • honestly bringing our heartfelt, gut-wrenching questions directly to Him
  • expecting Him to answer
  • knowing He has a good plan for us
  • always remembering the hope of heaven

Friday, October 28, 2016

Lysing

God designed our bodies to remove things that don't belong there through the colon, kidneys, skin, lungs, and mucus linings in the nose and ears.

Since the symptoms of swelling subsided a couple weeks ago, KK has been spitting out phlegm without coughing, nasal discharge, or any other signs of a cold. It reminded me of the time right after the apoptosis sneeze back in February when KK's nose kept running and running but she didn't have a cold. There have been a few other times when things coming out of different orifices made me wonder if KK's body was releasing cancer cells.

All of these could very well be signs of lysing: the process of eliminating the waste product of cancer cell membranes that have popped. If so, I am grateful that the waste from the cancer cell die off is being removed before Wednesday's MRI!

Tuesday, October 25, 2016

I Understand

I understand that God's creation is amazing. He created fruits and vegetables that contain the necessary vitamins and minerals to nourish our bodies and support our immune systems...not to mention the complexity of that immune system.

I understand that God continues to provide for all our financial needs even though insurance does not cover the cost of the IVC treatments or colonics.

I understand and am so thankful that God has blessed me with a child willing to forego processed foods and eat a vegan diet to starve the cancer.

I understand that God gives wisdom to those who ask...and, boy, have I asked (and received).

I understand that God has a good plan for KK even though this is not the path I would have chosen.

Monday, October 24, 2016

I Don't Understand

I don't understand how the FDA can approve "MIBG Therapy" that injects a child with radioactive medication and then secludes them in a lead-lined room even though it does not cure cancer, yet they won't approve the use of vitamin C given in high doses intravenously to treat cancer.

I don't understand why insurance companies will pay $8,000 for a bolus of Avastin every two weeks, but won't pay $130 for IVC three times per week (for a total of $780 every two weeks).

I don't understand why cancer hospitals promote the consumption of simple sugars and carbs or use a high-glucose solution when cancer patients need to be fed intravenously knowing that sugar feeds cancer. (And, yes, I believe they do know this...why else would they use radioactive sugar as the contrast to make cancer cells "light up" during an MRI?!?!)

I don't understand why doctors feel the need for us to "rethink" the raw vegan diet if KK loses too much weight as if weighing more equates to being healthier.

Wednesday, October 19, 2016

I Can't Change That

I have made a lot of decisions since the latest symptoms of swelling appeared: waiting it out at home, putting KK on dexamethasone, weaning her off dexamethasone, resuming IVC treatments, asking for a reduced dose of vitamin C. I have asked people to pray for God to give me wisdom and discernment as I have felt like I was literally making life and death decisions for KK. 

At the beginning of this journey, KK and I talked about how God knows the number of her days and cancer can't change that. I have to remind myself that God knows the number of her days and decisions I make can't change that.

Tuesday, October 18, 2016

Relief

After KK presented with symptoms of swelling, Dr. Rothfeld from the The Rothfeld Center suggested that I give KK dexamethasone (steroids) to reduce some of the swelling. I asked KK's team at Dana Farber if I could give her some from the supply I had on hand from last year. They said yes, so I gave her a few doses over the weekend. I didn't want KK on the steroids for long...just long enough to give her some relief. She hates how she feels when she is on them (not to mention, I'm not a fan of how I feel when she's on them). When I texted my friend Terri, she asked if the steroids prevent apoptosis. I didn't know the answer to that so I did my research. Sure enough, dexamethasone slows down apoptosis in glioblastoma cells...confirming that steroids are not a long-term solution unless they are absolutely necessary.

The team at Dana Farber also suggested Tylenol for the headaches. This reminded me that I had Celebrex on hand from last year as well. I chose to use the Celebrex instead of Tylenol since it also has anti-tumor properties.

Every time KK went to sleep, I hoped and prayed that she would wake up feeling better. After spending a restless night filled with fear on Saturday, God reminded me that it took a couple weeks from the onset of major swelling until what I perceived as apoptosis back in February. I felt an amazing sense of peace when I woke up.

By Sunday, the only symptom that remained was the right-sided weakness and a slight headache when the Celebrex wore off.

On Monday, the severity of the weakness seemed to come and go in waves -- the worst of which lasted between 30-40 minutes. I decided to bring KK to her IVC treatment on Monday as I believe we need to keep "feeding" the cancer cells so they die off. I asked for a reduced dose of vitamin C (50 grams instead of 100 grams) so as not to overwhelm KK's system. It is such a delicate balance.

Today, KK woke up with almost full use of her right arm and hand. She was even able to dress herself and go to tutoring.

Though I don't think she's quite out of the woods, KK and I are praising God for these improvements. Please keep praying for God to pop those cancer cells!

Thursday, October 13, 2016

A Tale of Two Days

Yesterday, I was ready to post about how well KK has been doing. In the last week, I have had multiple people comment about how great she looks. Her energy has been up, she has been more engaged, and she just looks good. However, at the end of the day I was spent and didn't have the energy to write a blog post.

Then she woke up today.

I heard her in the bathroom early this morning and I knew something was wrong. When I got there, she had the bucket in front of her and started gagging like she was going to throw up. I asked her if she was okay. She slowly uttered something and all I understood was "arm". Her right arm just flopped by her side. She finally threw up (swelling throw up) an hour later. I hoped that this would relieve some pressure as it has in the past, but it did not. She has continued to exhibit symptoms of swelling as the day has progressed -- right arm weakness, slow speech, neck pain, her tongue is not straight when she sticks it out, hardly eating, and sleeping most of the day.

I believe this is due to cancer cells swelling because the vitamin C is doing its job. However, it is hard to hear KK say "I don't like this" as she fights back tears. I would really appreciate it if everyone would plead with God for apoptosis tonight.

The next MRI is in 20 days.

Tuesday, October 11, 2016

What's Your Excuse?

At summer camp last year, KK joked with one of her counselors, "I've got brain cancer. What's your excuse?"

I recently decided to take that quote and make it into a t-shirt. Thanks to the father of KK's friend Lucas who took my design idea and made it a reality.

I designed one for myself as well. It says, "I never imagined I would be an amazing brain cancer mom, but I'm killing it!" Unfortunately, I don't have a picture of it, because I ruined it after wearing it just once.

(PSA: Don't use hotel soap to try to clean a salad dressing stain or you may bleach the shirt.)

Saturday, October 1, 2016

Unseen Disabilities

KK lives every day with a visual field cut. She has no peripheral vision on her right side -- a literal blind side. This field cut is something that is unseen -- both by KK and others. 

Just about two weeks ago, I had the privilege to speak at chapel at Holden Christian Academy. Before I spoke, KK and I did a little Q&A with the students. As we answered questions, I showed them how KK can't see anything on her right side. I heard the gasps...it is shocking to realize just how much she cannot see. 

Oftentimes, the loss of her peripheral vision is not a big deal. Every now and then, it means she bumps into things and later on we wonder how she got a bruise on her leg. I have learned to use my words to give KK a verbal cue when things are on her blind side. She often asks to hold my left arm so that I am on her blind side. We have adapted.

The most difficult part of having a visual field cut happens when she bumps into people. It is especially difficult because people get upset and don't understand why she would walk right into them. Today, we tried to navigate our way through a large crowd. I apologized to people that KK accidentally bumped into and tried to quickly explain that she couldn't see anything on her right. By the time we got through the crowd, KK was scared and in tears. 

I think it is time to talk to her team at Dana Farber about getting an Identification Cane to help people see this unseen disability.

Saturday, September 24, 2016

Mother's Helper

KK with Lauren and Michael
at the Southwick Zoo
A couple weeks ago, a family from church invited KK to the Southwick Zoo. She had a wonderful time with Lauren and Michael. Michael is one of her favorite "littles". She prays for him and a handful of others all the time.

After their time together, Kristin and I talked about having KK spend time with Michael so she could focus on homeschooling her older kids. We decided Wednesday mornings while I was at work and before KK's IVC treatment in the afternoon would be a good time for KK to do this.

The first Wednesday, KK woke up so happy for her first day as a mother's helper. She had so much fun playing, reading, and watching a video with Michael. By the time Kristin dropped KK off at the church, she was so exhausted that she fell asleep on the couch at church before Kristin left.

It is such a blessing for KK to do something she loves so much. I am thankful that this is also a blessing to the Delaneys and that a lot of homeschooling is able to be done during the time KK is playing with Michael.

Who knew that having brain cancer would afford KK this wonderful opportunity!?!

Monday, September 12, 2016

Well Versed in CAM

There was a lively discussion about Complementary and Alternative Medicine (CAM) in the IV room at the Rothfeld Center today. KK was right in the middle of the conversation chiming in with her thoughts. She warned others that chemo can make you feel really sick. She recommended getting colonics to get the toxins and "yuckies" out. She explained that detox baths (Epsom salt baths) can help as well. One of the ladies offered her a gluten-free cracker with raw almond butter. She said, "No, thank you," then explained that she is eating a vegan diet with no processed foods, not even gluten-free.

No 14-year-old should have to be well versed in things such as these. She has always had a good attitude about everything, but it was good to hear that she understands how important they are for her healing.

Thursday, September 8, 2016

The Heart is Deceitful

The heart is deceitful above all things, and desperately sick; 
who can understand it?
Jeremiah 17:9 (ESV)

Feelings are such fickle things...and according to this verse "desperately sick". Feelings can really mess with your mind. I, for one, do not understand why emotions can get the best of us. Feelings cannot change the truth, but it is so hard to see the truth through our feelings sometimes.

The days immediately after KK's last MRI, I felt like I was on a rollercoaster. One minute, I'm feeling good about the MRI results; the next minute, I am worried that the flare is tumor growth; then I remember that they don't know what is causing the increase in flare; then I worried about the suspected seizure activity; then... Well, you get the picture. I called my parents the night of the MRI to just get a feel for what they thought about the results. From my dad's perspective, he thought Dr. Manley was pretty positive about the results. Hearing that helped a bit. Two days later, I received an email from KK's nurse practitioner, MaryAnn, who was not at Brain Tumor Clinic. She said, "Dr. Manley told me that KK looked wonderful and things were very stable with her MRI (great news)!" Wow...very stable! Dr. Manley had stated "I'm not going to lie to you" when he talked about the increased flare, but I didn't realize he wasn't that worried about it. I needed to hear that!

Since the MRI, KK had another incident of right-sided weakness and slow speech while she was at tutoring. It didn't last long. After less than a minute, her strength returned and she was chatty. When we were at clinic yesterday, I mentioned this one incident in the last two weeks. Dr. Ullrich told me to increase KK's dosage of Keppra again. This morning, I woke up with a sense of fear that I couldn't shake: fear that the right-sided weakness is seizure activity, fear that the seizure activity is caused by tumor growth, fear that things are taking a turn for the worst. This fear meant the tears came way too easily today. I hate fear!

For God has not given us a spirit of fear, 
but of power and of love and of a sound mind.
2 Timothy 1:7 (NKJV)

The truth is that fear is not from God, so I spent a lot of time praying today. Praying for power and strength to trust that God is in control and I don't need to worry about what the future holds. Praying that I will love well -- or as a necklace KK has says, "Love like you've never been hurt" -- when I just want to curl up in bed and shut myself away from the rest of the world. Praying for a sound mind to not let my feelings rule, but to rely on the truth of what we know about the tumor right now: it is "very stable".

Then I re-read the MRI study (see below). I see so many positive things and realize once again that the increased flare could be tumor growth, it could be post-treatment changes, but it could also be vitamin C doing it's job -- causing cancer cells to swell. We, of course, are praying for the latter and praying that the "seizure activity" is caused by those cancer cells popping.



Brain MRI with and without contrast.

INDICATION: "13 year old female with a history of High Grade Glioma (2015). Interval MRI reduction resid tumor. MRI 1/20/16 - disease progression. Began modified 5-drug (Cytoxan/Celebrex/ Fenofibrate/Thalidomide) 1/29/16. Subsequent MRI with fluctuating changes."

TECHNIQUE: Multiplanar T1 pre-and postgadolinium, T2, FLAIR, DTI images were performed of the brain. Approximately 4.9 cc of Gadavist was administered intravenously.

FINDINGS: Limited, direct comparison is made with brain MRI dated 6/8/2016.

There is a left temporal catheter present which traverses the left temporal lobe and terminates at the level of the left cerebral peduncle.

The lateral, third and fourth ventricles are minimally enlarged and stable in size most likely on an ex vacuo basis.

There is a fluid-filled surgical cavity within the left occipital lobe. This is lined by confluent T2 signal prolongation involving the left occipital, left temporal lobe white matter and posterior aspect of the left thalamus, splenium of the corpus callosum and right periatrial white matter which is increased in extent representing either post-treatment change or increased extent of tumor.

Additionally, scattered foci of T2 signal shortening are seen within this region consistent with petechial hemorrhage.

Stable heterogeneous enhancing soft tissue/tumor is seen along the left lateral aspect of the splenium is slightly decreased in size as are approximately 18 mm in greatest cross-section when compared to 6/8/16 and further decreased in size when compared to 4/20/16.

The heterogeneous enhancement within the left parietal white matter, left occipital white matter and splenium of the corpus callosum is stable representing a combination of tumor and post-treatment change.

No subdural fluid collection or midline shift is present. The major intracranial arterial flow voids are normal in appearance.

Generalized dural enhancement is noted.

There is minor mucosal thickening within the paranasal sinuses. The mastoid air cells are clear. The adenoids are not enlarged.

IMPRESSION: Extensive post-treatment changes. Heterogeneous appearing tumor observed centered within the splenium slightly decreased in volume when compared to 6/8/16 and more significantly decreased when compared to 3/2/16. Confluent and heterogeneous signal abnormality seen within the left parietal, left occipital, left temporal lobe white matter is increased and suggestive of post-treatment change. Attention to this on follow-up imaging is recommended. Shunted patient. Stable ventricular configuration. No leptomeningeal dissemination of disease.

Wednesday, August 24, 2016

Enhancements

When I told KK's neurologist, Dr. Ullrich, about the recent bouts of right-sided weakness, I mentioned that I had a fleeting thought that they might have been caused by seizure activity. She suspects they may have been, so she increased KK's dose of Keppra (anti-seizure medicine).

Dr. Manley considers today's MRI to be stable with some enhancements to the tumor area. For those unfamiliar with oncology's definition of enhancement, it is not the positive "increase or improvement in quality or value"...it is an increase in the size of the tumor area. The enhancements may be tumor growth or post-treatment changes (possibly from radiation). I suggested that it could also be from swelling caused by the Vitamin C.

When we compared June's MRI to today's, I could see the increase in size that he pointed out. Dr. Manley said that they will watch these areas closely. I asked if that means we will return to a 6-8 week MRI schedule. He thought we could continue to wait 10-12 weeks, but he said if I felt we needed one sooner that they could arrange that.

As I looked at the two pictures, I saw some areas that seemed to have more definition in the folds of her brain (where the tumor was previously filling in empty space). I asked Dr. Manley about it and he agreed that it did look better.

Dr. Manley thinks that KK looks great clinically and is okay with us continuing our current treatment.

Dr. Manley said, "I treat people, not pictures." It reminded me of what Nurse Megan told us before March's MRI, "An MRI is just a picture." For those that want to see comparison pictures anyway, here they are...

June 8:

August 24:

June 8:

August 24:

Click here for the rest of the MRI images from August 24.

Tuesday, August 23, 2016

Scanxiety

Tomorrow is MRI and BTC (Brain Tumor Clinic) day at Dana Farber. The days leading up to a scan can cause anxiety that many cancer patients (and parents of pediatric cancer patients) have termed SCANXIETY.

I was reading a list of ways to deal with scanxiety tonight and laughed at their number one way to deal with scanxiety: DISTRACTION. I laughed because we certainly had a lot to distract us last week.

Last Monday, KK and I went over my parents' house to see my aunt and uncle who were visiting from Florida. When we got there, we found out that something happened over the weekend and my uncle was not doing well. My dad and aunt wanted to bring him to the hospital, but he was unable to walk so we called 911 and they brought him to Leominster Hospital. The whole experience brought up a lot of emotion for KK -- sadness, anger, frustration -- as she remembered ambulance rides, ER visits, being told she was going home then having emergency surgery. My dad encouraged her to stop crying and she told him she could cry if she wanted to (hmm, I wonder where she got that from?!?). When we left the ER, KK and I talked and she was able to process her feelings as we drove home. She said, "It felt good to cry." We spent the rest of the week visiting Uncle Dave at the hospital after work/KK's treatments.

The distraction worked to a certain extent, since I was too tired to think of anything by the end of each day. However, I would rather not use this coping mechanism to deal with scanxiety again. I would much rather cope with scanxiety by doing what God tells us to do with any anxiety:

Cast all your anxiety on him because he cares for you.
~ 1 Peter 5:7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

Sunday, August 14, 2016

In My Head or KK's

Over the last couple weeks, I have been worried about KK's vision. I couldn't explain why and I had no idea if it was just in my head. I brought up my concerns when we were at Dana Farber last Tuesday, but KK's vision didn't seem too off that day and they weren't too concerned at the time.

Right after church today, KK experienced right arm weakness and slow, slurred speech. When I asked her to squeeze my hands, she was barely able to do so with her right hand. I asked Pastor Derek to come and pray with us, then I brought her home. She took an Epsom salt bath and a 2 hour nap. When she woke up, her strength was getting better, she wasn't slurring her speech, and her eyes seemed brighter.

There is so much going through my head right now...

  • Is this all in my head or is there something serious going on in KK's? 
  • I hate PTSD.
  • It has been KK’s vision that has tipped me off that something has been wrong multiple times throughout this journey.
  • She had a super busy, non-stop weekend and I hope the symptoms today were due to exhaustion.
  • I was (and am) worried that today's symptoms are a precursor to a seizure. I have the baby monitor on full volume for the first time in months.
  • I am worried that there is tumor growth. This worry is fueled by the fact that she has been out of "cancer-fighting range" for the last 2 months.
  • Because she has been below "cancer-fighting range", we have increased her vitamin C from 50 to 112.5 grams over the last month. This may be causing swelling that leads to cell death (apoptosis).
  • KK's next MRI is in 10 days...will I be able to last that long?

I would appreciate your prayers for peace, wisdom, apoptosis, and complete healing.

Saturday, August 13, 2016

Home

Driving "home" for the first time!
I love that KK is wearing a Wally Red Sox shirt in this picture of her first ride home 8 years ago today. It seems apropos considering she had the opportunity to run home (twice) at Fenway Park today.
Running "home" today!
(I promise she is wearing a Red Sox t-shirt under that Patriots sweatshirt)
I told KK, "I'm so glad I gotcha!" and she responded, "I'm so glad I said yes!" We are both so grateful to be home together.

Friday, August 12, 2016

Wally


Go Red Sox!

Jimmy Fund Red Sox Weekend



KK is at the Jimmy Fund Red Sox Weekend with other teens that have been affected by cancer.

Those who know us will appreciate her comments:


  • "I am not a huge baseball fan, but I have chosen the Red Sox as my team."
  • "I can watch a football game because there is a lot of action, but baseball can get a little boring -- but not as boring as golf."

She is still planning to have an amazing time with a player meet-and-greet, watching the game in a luxury suite, staying at the Westin Hotel, followed by a day full of fun tomorrow.


The child life specialists at the Jimmy Fund Clinic are phenomenal! They know how to make all the kids feel so special. They have even gone out of their way to meet KK's dietary needs.

The Jimmy Fund Clinic team is posting updates of the weekend here if you'd like to follow along.

Thursday, August 4, 2016

You Should Blog About This

KK and I went on a little adventure on Wednesday to see the Moss Glen Falls. From what I could tell on the internet, the falls were just a short hike from a parking area. Most of the hike was flat and easy enough. As we walked along, KK said, "You should blog about this."

It was here that KK said, "You should blog about this."
Just after she said that, the path became more of a climb and KK was pretty nervous at certain points. We made it to a lookout with a beautiful view of the falls.

The view is worth it!

As I took a picture of KK with the falls in the background, I could see the fear welling up in her. When we started to climb down, she prayed, "God, help me to not be as afraid as I was climbing up here." She cried as I talked her through each step. As we hit level ground again, KK took a deep breath, regained her composure, and prayed, "God, thank you for helping me defeat this giant of fear." When we encountered people going to the fall, she told them, "It's a little climb, but the view is worth it!"

This is KK's "I have no idea how I'm going to get down from here" face.

As we drove back to the Trapp Family Lodge, we talked about the lesson found in what we just did: 

Just like KK followed my instructions and stepped where I told her to step despite her fear, we need to follow God's instructions and go where He leads despite our fear and uncertainty.

Wednesday, August 3, 2016

Such A Gift

Thanks to a very kind and generous family from Chapel, we are enjoying a week in a Guest House at the Trapp Family Lodge (as in Von Trapp of The Sound of Music fame) in Stowe, Vermont. This vacation has been such a gift on so many levels, besides the obvious gift of giving us their timeshare for a week. It has been so nice to relax and not have to do anything or be anywhere.

Monday was a rainy day, so we made a fire and watched movies most of the day while KK received her Vitamin C treatment on the couch.

The lodge offered a campfire and sing-along on Tuesday where we sang a variety of songs, including some from the The Sound of Music. The woman did her best to take requests, but she didn't always know all the words. When KK requested a song, she stood right by her to help her with the lyrics.



The view from our Guest House



This is the first time we have gone away since KK began eating a raw vegan diet (aside from camp where they had a chef willing to accommodate all of KK's dietary needs). Thankfully, the Guest House is equipped with a full kitchen. We brought lots of veggies, hummus, and fruit, as well as the Ninja IQ to make smoothies for KK.

I decided that KK could take a little vacation from the raw part of the raw vegan diet as a treat when we go out to eat. So I scoured the menus of local restaurants for vegetarian options. She has tried a spicy vegetarian soup, veggie chili (her favorite thus far), and a veggie burger with a lettuce "bun". She has found such joy in each meal! Much to KK's delight, there was even a little bookstore in the same building as one of the restaurants we went to for lunch.


For those that know how picky I am, it may amuse you to know that I was so concerned about what KK would eat that I forgot to make sure there was something I would eat on the menu as well.

Thursday, July 28, 2016

Happy Birthday!

I can hardly believe that KK turns 14 today! The sweet girl I met 8 years ago is growing into a beautiful, faith-filled young woman. I am so proud to be her mom.


KK's "first" birthday!


Would you take a moment to leave a birthday message for her in the comments? I know she would be thrilled to read them.

Friday, July 15, 2016

God Gives Us Hope

During Backyard Clubs this summer, we follow the story of Joseph as found in Genesis.

On Mondays, we focus on the truth that God give us hope. After having the kids act out the beginning of his story, I had "Joseph" sit in the middle of all the kids and we ticked off all the awful things that happened to him. Then we talked about how he could not put his hope in his father, in his brothers, in Potiphar, in the jailer, or in the cupbearer...the only one he could put his hope in was God. I asked the kids to share things that have gone wrong in their lives, then wrapped it up by talking about KK's story. I had to choke back tears as I ticked off some of the things that KK has gone through: 11 different homes before we adopted each other, the brain tumor diagnosis and 11 subsequent surgeries. I reiterated that she couldn't put her hope in the people who said they would adopt her, in her social workers, in medicine or in the finest doctors.

While I was telling the story during the morning Backyard Club, my phone started buzzing away and I wasn't able to answer it. My friend, Jenna, had brought KK to treatment and was trying to get a hold of me. It turns out that The Rothfeld Center received the results of KK's last blood serum test while she was at camp and her numbers were below cancer-fighting range. They wanted to increase her dose of vitamin C back up to 75 grams. KK was nervous about returning to 75 grams because of the pressure and headaches she remembered and she didn't want to do it without my consent. Since they were unable to get my consent in time, they gave her 50 grams. When I finally got the voicemail and texts, I desperately wanted them to up the dose to get her back in cancer-fighting range but knew that it was too late. It was killing me to think that she has probably been out of cancer-fighting range for the last month. It was at that moment that I realized that I needed to stop putting my hope in the vitamin C and put it back in God.

A couple hours later, Jenna dropped KK off at the afternoon Backyard Club just in time for me to ask her to take Joseph's place at the end of the story. I, again, talked about the things she has been through, then she said, "It was hard to trust people. I learned to trust my mom, then I learned to trust God." KK is such a beautiful example of someone who has put her hope in God!

Tuesday, July 12, 2016

Re-Camp...or Camp Recap

KK "passed" her swim test with the encouragement of Mrs. Bryan. She received her swim bracelet...then never stepped into the water again.

She thought the modesty dance they did to show girls what it means to and how important it is to dress modestly was hilarious. She "peed her pants" when Mr. Ed "apologized" for wearing his booty shorts.

In addition to veggies and hummus, the chefs at HUME were great about providing a nice selection of fruit at each meal and salad was available at lunch and dinner. They tried to "spice things up" by adding things like mushrooms to her usual veggies and hummus so she didn't get bored with her food. KK simply told them they didn't need to bother because she wasn't going to eat those things. She eats a lot of things, but she does not like mushrooms unless they are hidden in food.

Unbeknownst to KK, she had a great impact on a group of girls that were caught up in some middle school teen drama when they saw all that KK goes through and yet still wakes up singing.

KK was excited that her team was crowned champions once again...thanks in part to the work her cabin put into memorizing the Bible passages for the week.

The hardest part of camp for me was explaining to the nurse and others that there are signed DNR papers in KK's rescue med bag. I told them that the papers would need to be brought to the hospital with KK if she had to be transported there, but they were not to be given to the EMTs or the hospital staff...I wanted to be able to make that decision if the time ever came. Thankfully, they were not needed!

Wednesday, July 6, 2016

Get 'Er Done

KK took a little break from all the fun at camp to receive her treatment today. We went to the infirmary, I mixed the meds and accessed her port, then we settled in for a couple hours. KK spent the first half reading and the second half snoozing. That is how we get 'er done at camp!

Tuesday, July 5, 2016

Ride 'Em Cowgirl

KK is having a blast and working hard at HUME New England

Monday, July 4, 2016

IVC on Vacation

KK is at HUME for summer camp again this year!


I spoke with Beth, the nurse practitioner at The Rothfeld Center, about a month ago to figure out how we could continue treatment while KK was at camp in the Berkshires. I mentioned that there was a place about an hour from the camp that administers IV Vitamin C. Beth said it was customary for many integrative medicine centers to help each other and she would contact them to see if they would be able to treat KK one or two times during the week. The receptionist at the other center said they had a waiting list and wouldn't be able to fit KK in. Beth asked Dr. Rothfeld to contact the doctor of the other place to see if he might be able to change their mind. As of last Tuesday, we had not received a response, so we came up with a plan B: I would purchase the supplies to administer the vitamin C myself. Of course, when we went for treatment on Friday, they heard from the other doctor and he said they would fit us in. At that point, I already had my head wrapped around doing it myself, so we declined.

I gave KK a treatment before we left for camp and I will go to HUME on Wednesday to give her another treatment. We will do the same thing when we go to Vermont for vacation in August. It is so nice to have this as an option!

Sunday, July 3, 2016

Don't Change A Thing

KK had a regular clinic appointment at the Jimmy Fund last week. After the nurse practitioner, MaryAnn, asked all the usual questions and examined KK, she said, "Don't change a thing."

High praise, indeed...especially when you consider the skepticism we received when KK first began eating a raw vegan diet and doing colonics.

Sunday, June 26, 2016

Above Average

Today marks 14.6 months since KK's GBM diagnosis. There were many days during those 14.6 months when I wasn't sure that KK would make it to this day this side of heaven. Too many days for this mama. I have tried not to make a big deal out of grades and report cards over the years, but we are celebrating that she is "above average" in this area!

There were a few incidents that sent my PTSD into overdrive this past week: closing one eye when she looked to the right so she wouldn't see double, right arm weakness and shakiness following IVC treatment,... I knew that the looming post-diagnosis anniversary exacerbated how I was feeling. These incidents had me second guessing the decision to reduce the dose of vitamin C from 75 grams to 50 grams since her saturation levels were high at 75 grams. I worried that the right-sided weakness was due to tumor growth while earnestly praying that it was just a symptom of swelling that would lead to apoptosis. I also prayed for wisdom, discernment, and peace. Thankfully, the right-sided weakness and shakiness went away by the next day. I am fairly confident apoptosis was happening...which leads me to believe that the 50 gram dose of vitamin C is effective. One thing I love about the Rothfeld Center is we will know for sure in about 10 days, since they drew blood last week to make sure that her saturation levels are still in cancer-fighting range.

Please continue to pray with us for KK's healing. We trust that God, not man, knows the number of her days and cancer can't change that!

Wednesday, June 22, 2016

Charlie Anne

Just over a month ago, some friends from church put together a special bag for KK to give to another girl going through treatment. It was filled with all sorts of goodies and things to do while receiving an infusion. After the MRI on June 8, KK finally had a chance to give the bag away. When we got to the Jimmy Fund Clinic, KK saw a girl about 7 or 8 years old who looked sad. She brought the bag over to her and explained what the bag was. The little girl shook her head as if to say she didn't want it.* I felt badly about this rejection on behalf of KK, but KK was undeterred. She looked around the waiting room, found another little girl, and offered her the bag. The little girl was so excited and happy to receive this gift. After a few minutes (just enough time to go through all the goodies), the little girl and her mom came over to say thank you to KK. We found out the little girl's name is Charlie Anne. What a blessing it was to have a sweet "Charlie" to focus on while we waited for the results of what "Charlie" was doing inside KK's brain!

*A few moments after KK offered the first girl the bag, a nurse came out to get her and I overheard her father say that she wasn't feeling well at all.

Wednesday, June 8, 2016

No Soup for You

Or, rather, no burger for KK. And let me tell you, KK was perfectly content not getting a burger today because that meant there was no bad news!

I was doing pretty well leading up to the MRI today just knowing that KK was doing well physically. However, there was a moment right as I saw KK's team in the hallway when I tensed up and had to remind myself to breathe. It was so good to see them walk in very relaxed and lighthearted. 

They are all happy with how KK is doing clinically (presenting physically). Dr. Manley said the scans were stable. He didn't even offer to show me the scans to go over them...that was okay though, since I already put in a request for a CD-rom at Children's and knew I would see them later. 

MRI images from June 8, 2016
They admitted that they had been scheduling scans every 6-8 weeks to keep an eye on areas of concern. After today's MRI, they feel comfortable waiting three months before the next scan. I understand how incredible it is for them to wait three months between scans knowing how fast Glioblastoma brain tumors grow. We were told to keep doing what we're doing!

As a celebratory treat, KK had hot soup for dinner...and she's ready to go back to eating raw vegan tomorrow.

Sunday, June 5, 2016

All Figured Out

KK and I were talking to a sweet lady at church today. She shared that her family still prays for KK every night. When I told her that KK's MRI is on Wednesday, KK quipped that she is hoping for good news, but if it is bad news then she wants to eat a burger. She figures if the raw vegan diet isn't working, she might as well enjoy her favorite foods again.

Wednesday, June 1, 2016

Saturation

I am so grateful that The Rothfeld Center is willing to administer IV Vitamin C to a minor. They fully follow protocols set by clinics that have been front-runners in treating cancer patients with IV Vitamin C. One of those protocols includes testing blood serum levels to make sure the vitamin C saturation is at therapeutic levels (350-400 mg/dL).

The results of the test came back this week and KK is above the therapeutic range (above 500 mg/dL). Beth, the nurse practitioner, presented a few options:

  1. Drop from 75 to 50 grams of vitamin C three times per week.
  2. Receive 75 grams of vitamin C two times per week.
  3. Continue to administer 75 grams of vitamin C three times per week.

I didn't want to make any changes without praying and doing research, especially since I was unfamiliar with saturation levels. I also didn't want to make changes until after the MRI next week.

I found the protocols that The Rothfeld Center follows. After deciphering all the medical jargon, I know that KK's saturation levels, though high, are not toxic (except to cancer cells).

I would appreciate prayers for wisdom and discernment. Selfishly, the idea of reducing treatments from three days to two days per week sounds wonderful. However, my understanding is that the half life of vitamin C is short. Therefore, I would rather do three treatments per week to keep the levels in cancer-fighting range longer. Now I have to decide whether or not to reduce the amount of vitamin C. Honestly, if the MRI shows that the tumor is indeed dying off, I don't see a compelling reason to change what we are doing.

If any of you lacks wisdom, you should ask God, 
who gives generously to all without finding fault, 
and it will be given to you. 
~ James 1:5 ~

I am grateful that money is not a factor in this decision-making process. Besides the fact that the cost of treatment at The Rothfeld Center is significantly less than what we were paying before, God has provided every penny we need to pay for KK's treatment for the next two months through the generosity of His people.

Friday, May 27, 2016

Focus

During the course of the week, I started to notice KK holding her head cock-eyed (almost like she was trying to just use her left eye) and squinting her right eye when she looked to the right (something she did often when she was having double vision). I kept asking KK if her eye was okay.

On Wednesday, she confirmed that she was seeing double when she looked to the right. My mind instantly went to Monday when I believe KK experienced some apoptosis after her treatment. I had been wondering if she was trying to focus and re-adjust to seeing again. At the same time, the PTSD was whispering, "Double vision means tumor growth." I had to remind myself that she had been unable to see at all when she looked to the right unless she turned her head and looked straight on.

As we were driving to her colonic yesterday, KK said, "I don't see double!" Since then, her vision when she looks to the right has vacillated between seeing double and not...but seeing nonetheless. We are praising God for allowing us to see this progress!

We can't wait to see the results of the MRI in 12 days (not that I'm counting).

Monday, May 16, 2016

I Should Know Better

Last week when I made the decision to begin IV Vitamin C at The Rothfeld Center in Waltham, I knew it was the right decision. Things moved pretty quickly. When I spoke with the new patient coordinator on Tuesday, I was surprised that they were able to schedule our appointment with the nurse practitioner for Thursday morning. Since KK only had one dose of Vitamin C that week, I wanted to make sure they would be able to administer the Vitamin C that week as well. Thankfully, they were able to schedule treatment for Thursday afternoon and Friday morning.

At that point, I felt comfortable calling The Sante Center to let them know we wouldn't be returning. When I told KK that we would no longer be going to The Sante Center, she sobbed...we're talking gut-wrenching sobbed. I immediately felt horrible. It didn't even dawn on me that she would be so upset, but I should know better. The girl has had way too many times in her life when she wasn't able to say goodbye to people. We agreed that we would go back to visit when Charlie is gone (and we have a little more time). Just another reason for her to get better. 

Wednesday, May 11, 2016

Decisions Confirmed

God continues to answer prayer for the decisions that I needed to make!

KK did very well with the new type of colonic today. The woman that owns this place is so sweet and kind. She offered some ideas that could help us save money. She is greatly discounting the colonics and is willing to adjust her schedule to help us make this work for our crazy schedule.

KK and I were in awe once again of how good God is!

Tuesday, May 10, 2016

Decision Made

Thank you to everyone that prayed for the urgent decisions that I needed to make last week.

After much prayer and many calls, we have found a new place that is willing to administer IV Vitamin C on a minor in Waltham. KK begins treatment there on Thursday. In theory, it is 25-30 minutes closer...but it will all depend on the timing of her appointments and traffic on the Pike.

The only drawback was that this place doesn't offer colonics, so we are looking into other places for this important aspect of her treatment. We have an appointment on Wednesday at a place in Worcester that our massage therapist, Mieka, recommended.

Monday, May 9, 2016

Because Gray Matters

So, I'm not a big fan of ribbons that support awareness of different causes...there are just too many these days. However, I love how clever the Brain Cancer Awareness campaign is:


Sunday, May 8, 2016

My Heart is Full

What a wonderful Mother's Day!

I spent a lot of time remembering how poorly KK was doing on Mother's Day last year. When she walked into church with her walker, some people were taken aback by how bad she looked. I recall how there was no filter, no patience, and no quiet voice. During the sermon at church, she just wanted to lay down and made it known. By the end of our lunch with my parents, she just wanted to get home and was pushy about getting the check. That night, she started vomiting again. It turned out that there was fluid building up in her left temporal horn and she would need another surgery just two days later.

Today, KK walked into church with pep in her step. When Pastor Derek said, "Happy Mother's Day", KK responded, "Aww! I forgot again!" She came over, gave me a hug, and said, "Happy Mother's Day!" I told her it definitely is a happy day for this mother. During first service, she decided to help in the toddler nursery. I checked in on her and saw her playing happily with the twins, Stephanie and Steven. During second service, she had a bit of a headache and laid down on the couch in the foyer. We left church as soon as second service was over and went home so she could take an Epsom salt bath to detox before we went to lunch with my parents. Thankfully, her headache went away and we were able to have a wonderful lunch with Nannie and Grampy.

To top it all off, we celebrated 13 months post-diagnosis today!

My heart is full!

Friday, May 6, 2016

Tell Them About Me

Out of the blue this evening, KK said, "If I die and you adopt more kids, make sure you tell them about me, their big sister."

I asked, "So, you think I should adopt again?"

She said yes.

I reminded her that she needs to get better so we could adopt Tyler.

We had a whole conversation about how she would want a brother, where he would sleep, how we would need to get him a smaller bed, make the three season porch into a playroom, and put a gate at the top of the stairs. She said she doesn't think she would want a sister because "you know how girls can be territorial". However, she would reconsider the whole sister thing if her youngest, biological sister was adoptable.

Thursday, May 5, 2016

Decisions

Without going into details that aren't appropriate for this forum, I would appreciate if you would pray for some urgent decisions that I need to make. Pray that God will guide every step of the way. If you would like to pray for the specifics, I don't mind sharing them through email...just ask.

Wednesday, May 4, 2016

God Provides

As I finished the paperwork for the grant I am applying for two weeks ago, I was completely amazed at how God provides. I figured out long ago that KK's treatment costs more than my take home pay each week (for a period of time, it was more than 150% of my take home pay). When you factor in rent, tutoring, utilities, groceries, gas, and other expenses, I should be drowning in debt. However, the only debt I have right now is a debt of gratitude to a God who provides and to the people He has used to help us during this time.

And my God will meet all your needs 
according to his glorious riches in Christ Jesus.
~ Philippians 4:19

I am convinced that the God who provides for all of our financial needs will provide for all of KK's physical needs as well.

Monday, May 2, 2016

Pinky Swear

We received a gift card from the Pinky Swear Foundation today to help with gas and groceries. The story behind this organization is bittersweet. Check it out at www.PinkySwear.org.