Thursday, June 1, 2017

Directions (Otherwise Entitled Don't Trust Your GPS)

There has been new construction around route 9 that has caused many people angst who follow their GPS to get to Chapel.

Here are the directions I can confidently give without driving down to the church and figuring out the new directions in person because even MapQuest hasn't been updated:

If you are coming from either direction on 495, take route 9 WEST, take the Computer Dr./Research Dr. ramp, turn left at the lights onto Computer Drive which becomes Connector Road which becomes Flanders Road, drive for about 2 miles and Chapel will be on the left (don't turn too soon though or you will be on Washington Street).

Monday, May 29, 2017

Obituary

Here is the link to KK's obituary (turn on the volume). It will be published in the Worcester Telegram on Wednesday.

Writing an obituary is stinking hard and no parent should ever have to do it.

They are working on removing the "send sympathy flowers" link since flowers are something that will die on me as well. If you try to send flowers through the link, the funeral home will cancel the order and refund your money for me. In lieu of flowers, please consider making a donation to Holden Christian Academy's Scholarship Fund to honor KK's life. Donations may be sent to Holden Christian Academy, 279 Reservoir Street, Holden, MA  01520 (please note Scholarship Fund in the memo line).

Sunday, May 28, 2017

Patriots and Princess Celebration of Life

All who knew and loved KK are invited to celebrate her life on Friday, June 2 from 6-8pm at Chapel of the Cross, 160 Flanders Road, Westborough.

We will celebrate with a Patriots and Princess Party. She loved the Patriots (she always said I taught her well) and all things Disney (how could she not with me as a mom), especially Cinderella. No black clothing allowed with the exception of a few rogue football fans (who obviously weren't taught well). There will be plenty of KK's favorite foods that she gave up so willingly to fight cancer to munch on.

Saturday, May 27, 2017

I Love You, Sweet Girl

I miss hearing those sweet words, "I love you, Mommy". I hope you can hear her through the background noise.
video

Full Circle

When I brought KK home, our Chapel family had a "Patriots and Princess Shower" for us. We will bring her life with me full circle by celebrating her life with a "Patriots and Princess Party" on Friday, June 2.

I will post more details later.

Until then, here is a link to the blog post when I first met my precious girl.

Friday, May 26, 2017

Yes, Ma'am

God said "Yes, Ma'am" and welcomed KK into heaven at 5:47pm this evening.

8 years is not long enough, but I am so honored to have been her "mommy" for every one of those years.

There are so many stories to tell, but I don't have the words right now...


Monday, May 1, 2017

Progression

The MR vent check showed the tumor has grown on the right side and there is lots of swelling. They are admitting her and putting her on iv steroids and making her comfortable. Please pray that she won't suffer.

Sunday, April 30, 2017

Heading to Children's

We are heading to Children's for an emergency MRI. Prayers appreciated.

Friday, April 28, 2017

A Prayer

I was on social media tonight and one of our favorite singers posted this Scripture and read it as a prayer over her social media "friends". I have prayed this Scripture for others in the past, but it was the first time I heard it as a prayer for me. Oh, how it refreshed my soul...

We always pray that God will show you everything he wants you to do and that you may have all the wisdom and understanding that his Spirit gives. Then you will live a life that honors the Lord, and you will always please him by doing good deeds. You will come to know God even better. His glorious power will make you patient and strong enough to endure anything, and you will be truly happy.  
I pray that you will be grateful to God for letting you have part in what he has promised his people in the kingdom of light. God rescued us from the dark power of Satan and brought us into the kingdom of his dear Son, who forgives our sins and sets us free.
~ Colossians 1:9b-14 (CEV)

Thursday, April 27, 2017

A Great Day

KK and Lucas in Times Square,
just a block from our hotel.
A dear family that used to attend Chapel spoke with my friend Jenna about something "fun" they could do for us (me, KK, Jenna and Lucas). They ended up paying for us to go to NYC overnight and see Anastasia on Broadway. We planned the trip for shortly after Easter since I knew I would need a little break after the Easter Egg Hunt, Palm Sunday, Good Friday, and Easter.

Unfortunately, KK wasn't doing so well physically: her vision was severely compromised and she was experiencing some torticollis reminiscent of pre-diagnosis days (hence the Keeping It Real blog post earlier this week). Throughout the day, there were many looks and nods between Jenna and I as I worried about how KK was doing. Despite all of this, KK had a great attitude. She was pretty excited to see the musical, singing along to many of the songs.

At dinner after the musical, I said aloud, "Okay, God, I am laying out my fleece. You have seven days to bring some healing and show me that we are on the right track. If I'm not, then please show me what we need to do next." Literally within seven minutes, KK was sitting straighter, holding her head up better, and her voice was getting stronger. I looked at Jenna and asked, "Do you see this?" She confirmed what I was seeing. It did my heart good. As the night went on and KK continued to do well, we just kept praising God. At one point, I reminded Jenna that about a month prior to this I had said something similar when we were all together and KK was having headaches...within an hour, KK had a "shiver" go through her and her headache went away. I laughed and said, "God, you don't have to wait for me 'to lay out my fleece' next time."

I admit that I am still apprehensive about what we will see on the MRI next week since her vision remains poor. However, as I have led KK -- at times with my voice, at other times with my hand on hers -- this week, I trust that God will continue to lead us no matter what the MRI reveals.

Tuesday, April 25, 2017

Keeping It Real

When I am asked how I'm doing, I often say that if KK is doing well then I am doing well.

Right now, I am not doing well.

My heart hurts.

I am struggling.

I am worried that the tumor is growing.

I am not looking forward to next week's MRI, yet I want to have it today.

I need God to restore her vision.

I need Him to take away all seizure activity.

I need her to be headache-free.

I need God to heal my baby girl.

Tuesday, April 18, 2017

Keeping Me On My Toes

Last week was a tough one. KK was keeping me on my prayer toes, for sure.

I started to notice that KK was holding her head to the right so we went to Dr. Brooke for an adjustment on Monday, but her alignment wasn't that far off. I also had to keep reminding her to speak clearly, because she was slurring her words. By Wednesday, I noticed that she was drooling a lot. As we were packing up to go to her appointment that afternoon, KK said her arm was off...sure enough, it was "floppy". I asked her to stick out her tongue and it deviated to the right. She was definitely having a seizure (looking back, she was probably having multiple little seizures over the last few days). I gave her a rescue med (Klonopin) and off we went to treatment.

When KK had to go to the bathroom during the IV, I went with her because the Klonopin makes her very groggy and lethargic. While in the bathroom, I noticed that the bag of solution they used for the Lipoic Acid Mineral Complex was dextrose and not saline like it had been. I asked the IV nurse about it and she said that the protocol was to change from a small bag of saline to a larger bag of dextrose between week 2 and week 3 as they up the dosage of LAMC over the course of 4 weeks. I found this intriguing because dextrose is sugar and cancer feeds on sugar...the reasoning behind using dextrose is that it will open up the cancer cells to allow more of the LAMC in.

KK was very tired on Thursday (Klonopin has an elimination half-life of 30-40 hours), but she was chatty and happy. However, KK woke up during the night on Thursday and said, "Mom, my arm feels weird." When I went into her room and turned on the light, I saw that her right arm was shaking. The seizing stopped within a minute, so I didn't give her a Klonopin.

I spent the next couple of hours asking God if this was the beginning of the end (I hate to admit that my head went to places it shouldn't have to go over the course of the week) while praying for wisdom to know what was going on and what to do next. I finally fell asleep just before dawn. When I awoke, I remembered the dextrose solution and realized that it was the only thing that was different. I asked the Rothfeld Center to use a saline solution instead of dextrose on Friday, so they did. KK's vision is still a bit off, but, thankfully, there have been no (visible) signs of seizure activity since then.

Sunday, April 16, 2017

Happy Easter!

A happy Easter indeed!

Saturday, April 8, 2017

Among the 30%

Here we are 2 years post-diagnosis and going strong. Though KK is by no means out of the woods, as some friends who saw her recently said, "She looks good! She looks really good!"

The fact is only 30% of people diagnosed with a Glioblastoma Multiforme Grade IV brain tumor live for 2 years post-diagnosis. As I reminded KK of this, she said, "I'm defying the devil again!"...not the odds, but the devil...gotta' love it!

In 3 1/2 weeks, we will find out what is happening inside KK's brain.

Tuesday, April 4, 2017

Coursing Through

I want to document what KK has been experiencing since beginning the new supplement in February. It is my hope that it can help others who might want to know what others experienced when they began using it.

One afternoon at the end of February, KK said she felt an energy going through her. I asked her to describe it and she said it felt like it started in her head and just went down her body. At one point, she said it went out through her feet; at another point, it went out through her hands.

One day at the beginning of March, KK was feeling weird off and on. During lunch, she said she felt a weird feeling in her chest and in her right hand. I went through some of my tests to see if it was a seizure, but she seemed fine. The weird feeling continued to come and go as we were at the movies. I asked KK if she wanted to go home, but she didn't want to leave. Again, I wondered if she might be having a seizure. One thing that kind of reassured me that she wasn't having a seizure was that she remembered multiple things about the movie (and one of the previews) hours later, which wouldn't normally happen if she had a seizure. Let's just pause for a moment and celebrate that she remembered details...considering her short-term memory loss!!! When we got home from the movie, she felt the weird feeling again and said, "Devil, you are not going to win!" Shortly afterwards, she said "Woo!" and told me that she felt like a negative energy left her.

That night, I tried contacting other people that used the supplement for their brain tumors to see if they experienced anything similar. One gentleman said that he remembered having strange sensations/over-sensitization and his equilibrium was a bit off when he began the supplement.

The weird energies continued to go through her the next day. I still wasn't 100% sure that she wasn't having seizures, so I asked her multiple times if she thought she needed a rescue med. She said no all day long until she finally said yes that night. I gave her one of the dissolving tablets and a half hour later she had another episode. It pretty much confirmed that these energies and weird feelings weren't seizure activity. I read that this supplement is a powerful antioxidant that can actually turn the toxins released by cancer cells as they die into energy...I began to wonder if healing was happening in KK's brain and releasing an electrical surge through her body.

Last week, KK started the IV version at the Rothfeld Center. Before we began, the IV nurse had spent time gathering information from another center that uses Lipoic Acid Mineral Complex regularly. One of the things they wanted us to know is that many patients report having blurry vision during/after their first infusions that is short-lived. I'm so glad she warned us, because KK did experience some vision issues a few hours after the first infusion on Monday. She didn't have any vision problems after the second infusion on Wednesday. However, she did have headaches on Tuesday, Wednesday and Thursday that were very concerning to me. Honestly, I was worried that the headaches were caused by tumor growth. I "laid out my fleece" with God on Thursday and said that if the headaches didn't go away in 7 days then I would contact Dana Farber to see if we could move up the MRI. Well, it didn't even take 7 hours before the headaches went away. KK felt an energy go through her and her headache was gone.

Saturday, March 25, 2017

Saying Goodbye

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

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

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


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

Monday, March 20, 2017

Saturday, March 18, 2017

God Continues to Provide

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

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

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

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

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

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

Saturday, March 11, 2017

Keytruda Testimonies

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

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

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

Wednesday, March 8, 2017

23 Months!!!


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

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

Tuesday, March 7, 2017

Immunotherapy Clinical Trial

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

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

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

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

Saturday, March 4, 2017

Tests

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

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

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

Saturday, February 25, 2017

Just Say No

"Just say no" was a slogan that was part of the "war on drugs" when I was a kid.

Right now, it is what we are saying to drugs that would traditionally be used to treat a Glioblastoma brain tumor. 

As I mentioned after the last MRI, KK is no longer taking Cyclophosphamide, the low dose of chemo she has been taking for the past year. The reality is it wasn't working as evidenced by tumor growth. So all it was doing was killing platelets and white and red blood cells, as well as adding toxicity to KK's body. 

I received a call from Dana Farber last week. They said that KK has the PD-L1 mutation and qualifies for the immunotherapy clinical trial. After KK experienced vision loss due to pressure in her head last week, I am convinced that I cannot put her through a clinical trial that is designed to create an immune response that causes swelling (which could cause "seizures or worse").

KK has also been weaned off the steroids that we used to control the swelling last weekend. 

The only thing she is taking is the new supplement. (She is not receiving IVC treatments either, since IVC causes swelling...we are waiting for The Rothfeld Center to get the intravenous version of the new supplement.)

Please continue to pray. Without "treatment", Glioblastomas are known to double in size in a matter of days. I believe that God is using the new supplement to heal KK. Instead of getting worse, KK is feeling better. The headaches are gone and KK has regained peripheral and color vision. She sees "flickering" that I assume is caused by the optic nerves trying to settle. Thankfully, it doesn't seem to bother her as she has resumed normal activities and only mentions it once in a while.

Sunday, February 19, 2017

In Living Color

When KK's vision started getting "darker", she said she was seeing things in black and white. On Saturday, she started seeing some colors again. It is kind of freaking her out. She says, "There are so many colors that my brain is like, 'Whoa!'." Her field of vision is widening a bit as well. I think her optic nerves will need a little more time without pressure in order to heal and figure out how to process colors correctly.

My parents came over this morning to watch KK while I went to church. When I left, KK had a headache, was holding her head and crying. I asked her what number the pain was. She said it was a "1" (probably a 4 out of 10 for most people). At that point, I knew the tears were from the steroids since she was at a "1" most of yesterday without crying. When I called home between services, KK seemed to be doing well. When I got home from church, she didn't have a headache and has remained headache-free all afternoon/evening.

There is one positive to all the new blood vessels that were formed around Charlie through the HBOT...more of the supplement is now able to go directly into the tumor! So grateful that God can use everything for good!

Friday, February 17, 2017

Common Denominator

This is a long overdue update simply because I have had trouble figuring out what to say.  So, I'll start here...

KK has not been doing well.

After the simple partial seizures, we took a break from HBOT to make sure they were under control. Throughout the week, KK had a few issues - a passing weakness in her right hand, vomiting Monday night, shivering/chills for about 30 minutes on Wednesday night. I didn't see any indication of seizure activity, so we started HBOT again on Monday.

On Tuesday evening, KK said "Oh!" I asked her what happened. She said, "Something happened in my head," but she was unable to clarify what it was. After HBOT on Wednesday, KK said that a film like a weaving pattern came over her eyes during the treatment. This happened in the past, so I didn't think anything about it. However, it got worse as the day went on and she started to have a pounding headache. Her vision became "darker" and she has no peripheral vision. I have started giving her steroids to help relieve the pressure. I cancelled all her appointments yesterday and she slept almost all day -- only getting out of bed to go to the bathroom. 

I have been praying fervently for wisdom and discernment. As I sit here and type this, I see that the common denominator is HBOT. I believe that the HBOT may be the cause of the problem. It is possible that the oxygen helped form new blood vessels, essentially feeding the tumor. 

Pray that the new supplement will be able to reverse any tumor growth safely. Pray that the progress that was made with the HBOT on KK's short-term memory will remain since we will not be continuing those treatments. Pray also for KK's emotions as she deals with the side-effects of the steroids. Finally, pray that KK's vision will be restored...if there is too much pressure on the optic nerve for too long, it is possible that the vision loss could be permanent.

Thursday, February 9, 2017

Long Weekend

Last weekend was a long, exhausting weekend.

KK had a simple partial seizure on Friday afternoon. It consisted of a loss of strength in her right hand, her tongue deviated to the right, and slow speech. When we were at the Brain Tumor Clinic earlier in the week, Dr. Ulrich realized we were prescribed the wrong version of Klonopin, an oral rescue med, last February. She said the one we had would take 20-30 minutes to work and that we should have been prescribed the dissolvable version. She said she would mail us the new prescription. Since I had not received it yet, I gave KK one of the old ones. Thankfully, it worked and the seizure stopped. After contacting Dana Farber, they told me to increase her dose of Keppra.

Saturday, KK was out of it for most of the day. The Klonopin made her very lethargic. That night, when I got her up to go to the bathroom, she was having another simple partial seizure. This time, I gave her just half the Klonopin...the seizure stopped and her strength returned. 

On Sunday, she was like a zombie at church. We ended up leaving early so she could take a nap. She seemed better after the nap and we went to my parents' to watch the Super Bowl. KK had yet another simple partial seizure during the Super Bowl. I gave her another half of Klonopin. At the beginning of the third quarter as KK came out of the seizure, I said "KK is doing better; now my Patriots need to start doing better." (They did!)

The one good thing about the timing of Friday's seizure was that it happened before I started KK on the new supplement. If the seizure happened after giving her the supplement, I would have associated the seizure with it and would have stopped giving it to her.

I cancelled Hyperbaric Oxygen Therapy until we got the seizures under control. If she had a seizure in the hyperbaric chamber, it would take time to depressurize it before they could get her out. 

I have not seen any more seizures this week. She has had other issues, but thankfully no more seizures.

Thursday, February 2, 2017

Alternative Peace

The Nurse Practitioner at The Rothfeld Center was able to see me today rather than waiting until tomorrow. We had a chance to go over the results of the MRI, to talk to her about my thoughts of adding another alternative treatment, and to discuss next steps. When I mentioned the new treatment, she knew exactly what I was talking about. She also told me that there is a blood test that they can do that will screen for what alternative treatments KK would be most sensitive to...including the one that KK is starting tomorrow. I immediately felt a wave of peace come over me as I realized that we don't have to grasp at straws trying to figure out which treatment option(s) will work best.

Here are a couple more things that brought me peace:

  • The blood test has a 2-3 week turn around...as it so happens, I ordered 3 weeks worth of the new treatment. 
  • The test is pretty costly and not covered by insurance, but God provided most of that money before I knew we would need it when I received a check from Dana Farber for a full month's rent on Tuesday. 

MRI scans

Charlie has infiltrated the right side of KK's brain. (NOTE: MRI images are inverted...left is right and right is left.)

MRI images from February 1, 2017

Wednesday, February 1, 2017

Crossing the Midline

The tumor has definitely crossed the mid-line. This is something that they have been watching over the last few MRIs. It was unmistakable today. It is diffuse (not solid) in the right hippocampus (which could account for some of KK's memory loss in addition to the necrosis). There is not much change on the left side.

Dana Farber is beginning a Phase I/II immunotherapy trial. There are certain markers that need to be met to qualify for this trial. I gave them permission to test her tumor tissue for these markers, but I am not sure that I will enroll KK in it if she does qualify. The idea behind immunotherapy is that they try to create an immune response so the body attacks the tumor. This often causes swelling. When the doctors said that swelling can cause "seizures or worse", I cried...I don't know if I can do that again. One thing the doctors are not doing is telling us we have to try this or that. They don't have anything they can reliably offer and say "this works". They told us that KK can come off the Cyclophosphamide (chemo) since it is no longer effective and is just adding toxicity to her body. They said that we could continue IVC and HBOT. They were very supportive and put a lot of trust in me to make the best decision for KK.

While the tumor tissue is being tested for the PD-L1 marker for the immunotherapy trial and I pray about whether KK will participate in it if she does qualify, I am going to add in another alternative treatment that I have had "in my back pocket" for a while. As we left Dana Farber at rush hour, God brought this treatment to mind and I called the company that sells it to find out more information. The thing that intrigues me is that it can be given orally (every 6 hours to maintain saturation) and/or intravenously. I will talk to the Rothfeld Center about the latter on Friday.

I will work on getting the MRI scans on the site tomorrow.

Tuesday, January 31, 2017

MRI Tomorrow

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

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

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

Saturday, January 28, 2017

Unexpected Benefit of HBOT

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

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

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

Friday, January 27, 2017

Choosing Peace

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

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

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

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

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

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

Wednesday, January 25, 2017

Comfort Plus

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

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

Monday, January 23, 2017

Vacation Recap

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


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


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


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

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

Here is a video of one of my favorite memories:


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

Wednesday, January 11, 2017

New Accomodations

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

Friday, January 6, 2017

Diving Time

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

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

Thursday, January 5, 2017

And The Answer Is...

Mass Health approved the HBOT!

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

Wednesday, January 4, 2017

For Those Who Love Cliffhangers

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

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

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

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

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

They received the prior authorization request dated December 29.

And their response...









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

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

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

They didn't have the response.

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

Then my phone rang just before 5:00.

Could it be the Wound Care Center???









Alas, no, but...









...it was Mass Health.

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

Tuesday, January 3, 2017

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.