Friday, December 29, 2017

Making It Through

It hasn't been pretty, but here I am on the other side of Christmas day. As mentioned here and here, I have been trying to prepare for the moments that I know are going to be hard so there are fewer events that blindside me.

Here are the moments for which I prepared surrounding my first Christmas without KK...

Christmas Tree
When I first thought about getting a Christmas tree, I couldn't figure out if I wanted to get a real tree, get an artificial one, or no tree at all. I wasn't sure if I would have the energy to deal with the upkeep of a real tree and I didn't want to invest in an artificial tree even if I could find one that I liked (I can't stand the feel of the fake needles). After talking this through with Dr. Chuck, I decided to enlist my parents' help in getting a real tree. Growing up, there had to be snow on the ground (or rain in the air) in order to get our tree then we went to multiple lots looking for the perfect tree. As far as following traditions go, KK and I almost always ended up getting a tree on a snowy day in mid-December when school was cancelled...I refused to go to a thousand different places though. My mom kept asking when we were going to get the tree and I joked that there had to be snow on the ground. As soon as the Christmas musical was over (and there was snow on the ground), I knew it was time to face the I made plans with my parents to get the tree that Wednesday after work. I had a really bad day at work that morning and ended up leaving early. Since I was already having a bad day, I figured I might as well put myself out of my misery and called to see if my parents would mind getting the tree earlier. They came down right away and we got a nice tree just down the road. 

I knew that decorating the tree was going to be hard as well, so I asked a couple friends for their help before I even bought the tree. As the week that I got the Christmas tree continued to spiral downward, I decided that people didn't need to be subjected to the ugliness that was in my head and cancelled their help. I put the lights and garland on because I knew I needed a little light in the middle of this dark season. As I started to go through the bin of ornaments, I couldn't bring myself to put them on the tree.  

Christmas Presents 
I decided that I wasn't doing presents this year. It took me a while to communicate this to my parents. My poor mom called about a week before Christmas to find out what I wanted to have for Christmas dinner and what products I needed so she could fill my stocking. After we talked about food options, I blurted out that I didn't want to do any presents this year just before she was going to ask what I needed/wanted. She seemed a little confused as to what else we could do. I told her we could still eat and we could play games, but I would not be doing gifts.

The idea of buying gifts required too much energy. I have to admit that I have never enjoyed shopping...add in shopping amongst people preparing to celebrate Christmas with their families and I was ready to curl up in bed until December 26.

The idea of giving gifts required too much thought. Grief takes up way too much brain space (I've started another blog post about this that I have yet to finish) leaving nothing for me to figure out what someone else might want or need. 

The idea of receiving and opening gifts required too much happy pretense. To be honest, every gift I found on my "desk" at work had me in tears.

Christmas Day
When snow was in the forecast for Christmas morning, my mom asked if I wanted to go over their house after the Christmas Eve Candlelight Services and stay overnight. I said no. I guess I didn't articulate very clearly that I didn't want to "celebrate" Christmas and December 25 needed to be just another day.

Once the snow stopped and the streets were clear, I drove to their house. We had delicious (because mom cooked, not me!) food and played two full rounds of Mexican Train (mom won the first, I won the second...thanks, Dad, for the games!).

Games are serious business around here!
After the games were over, my dad started to set up the tripod and camera in front of their Christmas tree. I simply stated, "No pictures." I didn't want to celebrate the day, let alone memorialize it with a photo.

If you were among the people that texted me on December 25, thank you for your kind wishes and your prayers. I chose not to respond to those texts because I was not celebrating a merry Christmas and not because I didn't appreciate your thoughtfulness.

Between Christmas and New Year's Day
The plan (or, rather, the prescription from my psychologist 😉) for the rest of this week has been to rest. I have taken this plan very seriously -- sleeping 10 hours per night in addition to a few good naps.

Thursday, December 28, 2017

Pushing Through

On the first Sunday evening in December, Chapel has its annual Soup and Bread Potluck and Carol Sing. I went into church that day and shared that I was feeling conflicted about pushing through this event. My heart was saying, "This is going to be too much."; my head and my work ethic said, "This is your job. Suck it up and push through." I knew that there were going to be many events during December that I would have to push through and didn't necessarily feel this was one of them.

I was not pressured either way and decided I wasn't going to go. However, we had not talked about or planned for the kids' area that we tried last year and I started getting texts about what needed to be done. I realized it would be easier for me to go and do it myself than to try to think through each detail and explain it to someone else.

I did okay until the song "White Christmas" was chosen and the memories overwhelmed me. Memories of a 7-year old KK surprising a waitress at Bertucci's as she sang every word of the song "Sisters" as it played. Memories of us Christmas caroling where an elderly gentleman asked for the song "White Christmas" (which was not on our song sheets) and KK confidently began singing. As the memories came, so did the tears. I could no longer do my job so I told someone on my way out that the kids needed someone to look after them and I left.

I adamantly told the staff that I knew I shouldn't have gone when we debriefed about the event on Tuesday. When I recounted the events of the day to Dr. Chuck on Thursday, he stopped me and told me that he was proud of me for going. I was caught off guard since I thought for sure that he would agree that this was one event that I didn't need to push through. He said that if I had not gone at all then it would be that much harder to go next year.

Touché, Dr. Chuck. Touché.

Thursday, November 30, 2017


After waiting to see how the cliffhanger I mentioned in the last post would end, I meant to post this back in October, but I have been a little busy...

Not having the mortgage commitment letter by the date listed in the purchase and sales agreement created a few problems...

As mentioned previously, I wouldn't have a door to go through in 2 weeks since I had given my landlords notice that I would be moving out on October 15. They had already shown the apartment and had new tenants lined up to move in once I moved out. I asked if there was any chance I could stay one more week.  Thankfully, they graciously said yes.

I also had to ask the seller for an extension. After talking with the new lender, he thought we could have the mortgage commitment letter by October 17 and close by October 27 (a very quick turnaround). I wasn't sure if the seller would approve an extension or not. He had every right to refuse the extension and keep my deposit. We explained that I was working with a new lender and would be putting down an additional 5%. Thankfully, he saw that as a sign of good faith and agreed to the extension.

If you've done the math as I did, you know that this left me with 5 days when I would literally be homeless. I asked some people to pray and a few of them kindly offered me a room to stay in if I needed it.

I talked through possibilities with my wonderful realtor and we came up with 2 scenarios to present to the seller:

  1. allow me to move in on October 22 and I would pay the HOA fees for October 
  2. allow me to move my stuff in on October 22 and I would pay the cost of storing my things for a week

Before she could present these scenarios to the seller's representative, they called her and offered to let me move in on October 15 for less than the cost of the HOA fees. Since I was a little gun-shy after the issues with getting a mortgage commitment letter the first time, I didn't feel right about moving in before having the letter in hand. We agreed to a move in date of October 21 with a caveat that I would be out of the condo on October 31 if things did not work out.

Unfortunately, there was a delay in getting the mortgage commitment letter by October 17 and we had to ask the seller for another extension. From my understanding, the seller's lawyer advised him not to agree to another extension. He did not sign a formal extension and didn't give us a verbal answer either way, so we continued to work with the lender to get the mortgage commitment letter as soon as possible. We finally got the "clear to close" on Friday, October 20 just in time to move in the next day.

A great group of people from Chapel met me at the condo Friday night to clean the walls, floors, and kitchen. On Saturday, more amazing friends from Chapel and one of KK's friends from HCA and her mom helped me move my hoard in record time. With the looming move out date of October 31 if things didn't work out, I had them stack most of the boxes downstairs in the "in-law suite" and planned to live out of boxes until the closing.

Finally, on Friday, October 27, I became the proud owner of a 30-year mortgage and began the process of cleaning, painting and unpacking. Here are a few pics some of you may recognize from Instagram...

Degrading cat toys and other reminders that a cat lived here previously.

So thankful to be able to sleep in my own bed on the first night...
and beyond grateful to sleep soundly all through the night!

My parents came just about every day after the closing to help me clean and paint.
Dad would do the edging while I was at work; I would come home each night and roll.

Before I could hang clothes in my closet, I had to hang some cake pans.

Leaning art. Remembering my girl.

I hope the next Legro kid likes books!

This view!

And this!

I am amazed! Thank you, Lord!

Wednesday, November 29, 2017

Prepare to be Amazed

I meant to post this back in September, but I wasn't sure how this chapter of my story was going to end so I waited...

The day before my bank was supposed to issue the mortgage commitment letter, I received an email stating that it wasn't looking good for my mortgage to be approved. There was a problem on the part of the condo association and the amount of money in reserves that they had. By the time I read the email it was past closing time and I was unable to contact the bank. My wonderful realtor and I prayed and chatted about next steps.

The bank called me before 9 a.m. on Friday morning and told me that the mortgage was denied. After I got off the phone with the bank, I stopped by Drew Mortgage down the street from my apartment to see if they might be able to help. I was not given much hope. I cried as I headed to work.

I asked a few people to pray about the situation. A couple of them responded by saying something to the effect of "when God closes a door" and all I could think was "In 15 days I won't have any door to go through". I believe that it is true that sometimes God does close a door, but I also believe that sometimes Satan tries to get in the way of God's blessings.

When I got to Chapel, my wonderful realtor (have I mentioned how wonderful my realtor is?!?!) was finishing up the women's book study she facilitates. We spent some time trying to figure out what to do next. She said that five other units in this condo association have been sold in the last six months. We reasoned that it has to be possible to get some sort of mortgage since they probably all didn't pay cash. She called a mortgage lender that she knew and we talked to him about what was going on. He explained that if I put 10% down, rather than just 5%, that the mortgage company would not have to do a thorough review of the condo association's finances. We then started the process of applying for a mortgage through this lender.

Once we got everything rolling, the lender said to her a simple phrase that really stood out to me: "Prepare to be amazed!" I'm sure this phrase has been used in a lot of movies or TV shows, but I recognize it as a quote from the movie Meet the Robinsons. If you've been following this blog since KK passed, you know that one of the phrases that has been part of my vocabulary has been "Keep moving forward." It is not only a direct quote from Walt Disney, but it is the theme of this movie. I just felt like God was saying, "I've got this. Prepare to me amazed!"

To be continued...

Tuesday, November 28, 2017

Loaded Questions...They Just Keep Coming

I have learned how to answer some of the loaded questions I mentioned in this blogpost. If you have asked me how I am lately, you may have heard me answer "Moving forward." I may not always be doing well or even okay, but I am doing the work to keep moving it ever so slowly.

In addition to learning how to answer some of those loaded questions, Dr. Chuck has helped me prepare for times that we know are going to be hard. For example, holidays are expected to be hard so I have had to prepare a Plan A as well as a Plan B for Thanksgiving and Christmas. I have also realized that buying a Christmas tree and doing taxes are going to be hard, so I have made plans for both of those as well.

I have to prepare for these times that I know are going to be hard, because I know there are going to be other hard times that hit me out of the blue. For Thanksgiving, those "hits" came from more loaded questions. Well-meaning people or people that don't know my story have asked innocent-enough questions. Questions like "Do you have anything fun planned for Thanksgiving?" and "How was your Thanksgiving?" have absolutely wrecked me over the last week.

Friday, September 22, 2017

Redefining Emotions

This week, I have spent a lot of time thinking about how grief has affected my emotions. It seems like my emotions have been redefined by grief. It hasn't surprised me that feelings like sadness have been intensified. What has surprised me is how grief has tempered feelings of excitement and joy.

For example, I mentioned in my last post that I wasn't excited during a time when I expected to be -- and others expected me to be -- elated.

I remember similar feelings when I attended the Beth Moore conference in August. One of the things that I found interesting was how I could sing about the goodness of God with tears streaming down my face, but I could not "Celebrate Good Times" during the "Dance Party" before the third session and walked out with tears streaming down my face.

This week, I experienced another example of this. During the ice-breaker at LifeGroup, we were asked to name something we love, something we hate, and something that always makes us laugh.  Everyone's answers were lighthearted and not serious at all (people were naming things like ice cream and coconut, not their spouses or children). I couldn't think of anything lighthearted at all...all I could think of was that I love my girl, I hate cancer, and nothing makes me laugh right now. I took a pass when my turn came around. The first two answers, though true, were way too difficult to verbalize. As for the latter, I honestly could not think of anything that has made me laugh recently. I know I have laughed in the last four months, but I could not pinpoint anything in would be safe to assume that it probably had something to do with a baby or child, but my head didn't even go there.

The final catalyst for this blog post has been the constant question, "Are you excited about your move?" as the closing date on my new condo quickly approaches. To be perfectly honest, I can't say that I am excited...what I can say is that I'm looking forward to it.

As I continue to do the grief work and keep moving forward, I know that one day my emotions will once again be redefined.

"Weeping may remain for a night, but rejoicing comes in the morning."
~ Psalm 30:5 ~

Thursday, September 14, 2017

Looking Ahead

One of the things I had to do for "homework" for counseling over the last two weeks was to look at a calendar and try to figure out what dates might be hard over the course of the next year. The idea being that there will be dates I know are going to be hard and there will be other dates that will take me by surprise, so let's prepare for the ones I know about it.

Two important dates, KK's birthday and our "gotcha day", have already passed. Though I feel like I honored her well on those days, I just plowed through and felt completely exhausted and emotionally drained afterwards. Prior to this homework assignment, there were a couple "take me by surprise" moments like the one month anniversary of KK's death. A text from a friend on that day (as well as on the second month anniversary) saying she remembered and she was praying meant the world to me. It helped to know that I was not the only one remembering my girl.

I began looking at the calendar with obvious dates in mind: Thanksgiving, Christmas Eve, Christmas Day, diagnosis, adoption day, Mother's Day, my birthday, and the day KK died. However, I couldn't think of anything besides the obvious.

Then last week happened.

Earlier in the summer, I bought tickets to a Patriots game for all the staff. At the time, I was so excited on so many levels: the tickets were for the kickoff of a new football season, it was going to be (Super Bowl) banner drop night, and the Patriots would be playing Pastor Derek's team, the Kansas City Chiefs (whom KK said she never considered to be real competitors). The week of the game, everyone kept asking me if I was excited. I was surprisingly not excited and I couldn't figure out why...until I was at the game. It was then that I realized the last game I was at was with KK on banner drop night. As "Crazy Train" began playing and the Patriots ran onto the field, I teared up as I remembered KK's Celebration of Life. A friend who was watching the game at home texted me saying she teared up as she heard "Crazy Train". Again, it meant the world to me to know that I was not the only one remembering my girl.

Despite the sadness & the fact that the Pats forgot to play for a full 4 quarters, we had a lot of fun.

This got me thinking of other dates, or rather events, that are going to be hard. Super Bowl Sunday, the next Star Wars movie, vacation, and speaking at chapel at HCA are just a few of the ones I know are going to be hard.

Sunday, August 13, 2017

A Fitting Tribute

9 years ago today, my baby girl left her last foster home.
Tonight, I had the opportunity to help kids in foster care
by packing over 100 backpacks with my church family.

Saturday, August 12, 2017

Keep Moving Forward

"Around here, however, we don't look backwards for very long. 
We keep moving forward..." 
~ Walter Elias Disney 

When I sent my rent check in July, I wrote a letter asking my landlord to address a few things that have been ongoing since I moved in 4 years ago (including the cat urine smell that intensifies in the humidity). When I didn't hear anything right away (actually, I didn't hear anything until August 3 right before they went on vacation), I began looking at my finances and decided that it might be time to buy my own place.

I started looking for homes with an in-law apartment and found a cute little place in Shrewsbury. I went to the open house with Bethany one Sunday after church and loved the "tiny house" feel of the main floor. Though the seller considered it to be in "move in" condition, a walk-through with a contractor friend from church proved otherwise. Unfortunately, the seller was unwilling to negotiate on the price so I knew it wasn't for me.

As I continued browsing homes online, I found a nice little condo with an in-law suite last Thursday. A realtor friend from church arranged for us to see the property on Friday. After a little negotiating, I put down a deposit on Monday and had the home inspection yesterday. If all goes well, I will have the deed on October 10.

When I told Dr. Chuck my plans on Thursday and the reasoning behind the "in-law suite", he told me I am weird. I always knew I was weird, now it's official (though I'm pretty sure that "weird" is not a clinical diagnosis). He said that he usually counsels people not to make major life decisions in the first year of grief. In my case, he doesn't see any reason to offer that advice since I have thoroughly thought about and prayed this through. He did give me two homework assignments this week (that's what I get for "celebrating" last week when he didn't give me any homework). The homework: start packing and ask for help.

As for the first...I have less than 2 months to pack. I wonder how many boxes I will need to pack each day between now and the closing date.

And for the second assignment...I'm putting it out there: I need help. Granted, most of the help isn't needed until October, but I am putting the "to do" list (including things noted during the home inspection) together now...
  • The seller has a cat and I had trouble breathing by the time I left both times. Once I can get into the condo, the walls will need to be steamed and cleaned (dander is a sticky substance that sticks to every surface).
  • HVAC cleaning (see reasoning above).
  • Walls and ceilings will most likely need to be painted. 
  • There are a couple small areas where grout needs to be fixed.
  • Recaulking is needed in a few areas.
  • I will need a plumber and electrician to install a washer and dryer in the utility room in the in-law suite.
  • Though this is not a priority and may need to wait for a while (especially since it could be costly), I will need an electrician/HVAC to separate the heat/AC system into two units.
  • I will need lots of help moving. I have a lot of stuff. I am going to work on purging between now and then, but the hoarder in me is already throwing a tantrum.

Wednesday, August 9, 2017

To Sleep, Perchance to Dream...

...ay, there's the rub.

Don't worry, this post is all about literal sleep (or a lack thereof) and not the figurative sleep Hamlet implied.

During the first month of grieving, there were several nights that I had trouble falling asleep because my mind wouldn't shut off. Normally, it is a rare night that I have trouble falling asleep and I find that I'm able to fall asleep as soon as I write down whatever I'm thinking about...not so during those first few weeks. For example, I remember replaying everything I said over and over wondering if I shared everything I needed to the night of KK's Celebration of Life. Thoughts such as these weren't things I could just write down and be done with them.

The other thing that interrupted my sleep during the first month was a couple horrible dreams. I can count on one hand the amount of dreams I remember throughout my life...these dreams I can't forget. The first dream was short, but memorable. In the dream, I was yelling at KK and woke up with an intense feeling of anger. When I realized it was a dream, I felt awful and was unable to fall back to sleep. The second dream was much more detailed, but the details were all wrong. In the dream, KK was reading in the dark (no night light or other ambient light) in the futon bed (which she hadn't slept in since January) way past her bedtime. I was mad and started quickly slapping her face (her hair was short and fuzzy like when it started growing in) until she put the book down. I told her to go to the bathroom since she was already awake. As she walked to the bathroom, I noticed she was dragging her left leg (she had right-sided weakness, not left) and asked if she was having a seizure. She turned to look at me and nodded her head yes. I woke up at that point and just cried. Needless to say, I couldn't go back to sleep. As I tried to process the why behind these dreams, I reasoned that it was the "anger" part of grief coming out subconsciously.

So now you can understand why I wrote this back in June:
Finally, don't text or call early in the morning or late at night even if you know the person is a morning person or night owl. I'll say it again, grieving is exhausting. Sleep is a precious thing and sometimes it doesn't come easily.
Thankfully, I haven't had any more dreams like those. I haven't had nights where my mind is racing either. However, I have not slept through the night in weeks. I am waking up multiple times each night and having trouble falling back to sleep at least one of those times. I have never had trouble sleeping like this for such an extended period of time. I am so tired. I have tried taking naps in the evening. I have tried not taking naps in the evening. I have tried going to bed earlier. I have tried going to bed later. I have taken supplements. I have begun diffusing essential oils. Please pray for restful and restorative sleep.

Saturday, July 29, 2017

#playforKK Patriots and Princess Style

When KK was admitted to the hospital this spring, her friend Josiah Needham started a hashtag #playforKK (a little twist on #prayforKK). He decided to add K K to the back of his cleats and play his baseball games for KK. A few other kids from Chapel followed his lead to #playforKK as well. Then, when the middle schoolers went to HUME for summer camp, they chose to #playforKK in their competitions (and won!!!).

When I was talking with Cori at Dana Farber on Monday, she asked what I was going to do on Friday for KK's birthday. I told her that I had no idea. She encouraged me to do something fun, even check something off my bucket list.

Monday night, my friend Bethany (who happens to be Josiah's mom) texted me to find out if I had a plan for Friday. As I still had no plan, she suggested that we could #playforKK by catching a cheap flight to Disney on Friday morning then come home Saturday before anyone missed us. I thought that would be totally fun if it was any time other than summer...I do not do the heat and humidity that is summer in Florida. She then suggested going to New York for a show. I pointed out that would also be a great #playforKK day in an entirely different sense of the word. I told Bethany I would think more about it and talk to her at the office on Tuesday.

As I thought more about it, I started looking at what shows were playing on Broadway and found Disney's Aladdin. My mind immediately started thinking "Patriots and Princess" and I remembered that Patriots training camp was open to the public this week. I started to get excited since this would also be a way to #playforKK. I told Bethany my ideas on Tuesday morning and we immediately finalized plans to go to Patriots training camp on Friday morning then drive into NYC to see Aladdin Friday night.

Unfortunately, Bethany was diagnosed with pneumonia on Wednesday and was heart-broken when she told me that she had to cancel. I cried as this "perfect plan" to #playforKK with a Patriots and Princess theme seemed to be falling apart. After a few minutes of tears, I decided that I would just go alone since I had already bought the tickets and paid for the hotel. A little while later, I decided to text my friend Cheryl to see if she had any plans for Friday and Saturday. She responded, "We going to Disney?" (Hmmm, am I that predictable? Nevermind, don't answer that!) I explained to her the plans and she was game, despite being a Steelers fan.

So, early Friday morning, we were off...


It was a perfect way to #playforKK on her birthday!

...and I got to enjoy a little bit of Disney along the way.

Friday, July 28, 2017

Happy Birthday Wishes, KK!

May the kids in homeless shelters celebrating birthdays this week have the happiest of days in honor of KK's birthday! It was a joy, even through the tears, making these cakes for you.

Thank you to all who have given to our Birthday Wishes campaign thus far so Birthday Wishes can continue throwing these special birthday parties. 

Tuesday, July 18, 2017

To Thine Own Self Be True

I need to preface this post with a little info for those that may not know me well:

  • I am pretty self-aware. For example, I am not usually surprised by the results of annual reviews (though I still have anxiety issues going into them). 
  • I am an introvert. I often joke that I don't like people. The truth is I don't do well in large groups of people. It is draining to be in large groups. (I am fully aware -- see above -- there is another reason I don't do well with people, but I'll leave it at that for this blog.)
  • I am a processor. It takes time for me to think through possibilities and figure things out. Sometimes I wish I could just answer "off the cuff", but I know that my answer to a question or solution to a problem will be better if I have time to process. (This also plays into why I don't do well in large groups of people.)

The grief has been overwhelming at times.

I recognize that no two people will grieve the same way, I just wonder if what I'm experiencing is normal. In that vein, I sought out a bereavement group for parents who have lost children to cancer. My hope was that talking with people who have been through similar experiences would assure me that I'm okay. 

I attended one meeting in June and a second meeting last Wednesday. Unfortunately, I walked away from both of those meetings feeling pretty discouraged. Honestly, I have no idea why I thought a group like that would be helpful. 

The group consists of a large number of people that all need time to process and to talk. Besides introducing myself, there was no time for me to share as the facilitator spent the majority of the time checking in with other members of the group who have been there for years. Not that it matters much, since I am pretty quiet in group settings anyway. In addition to all that, the subject matter is tough and I need more time than usual to process and talk.

As soon as I got home from the bereavement group last week, I emailed a long-time psychologist friend to see if he had any time available to meet with me. He responded, "So let's get you in." 

The next day, I shared with our associate pastor that I didn't think the bereavement group was a good fit for me and that I emailed Dr. Chuck to meet with him. Daryl simply said that made more sense for me. The phrase from Shakespeare's Hamlet immediately came to mind: "To thine own self be true." I guess the whole self-aware thing got lost somewhere in the grief. 

I took this picture on my way home from counseling. It reminded me that,
yes, there is beauty in the rearview mirror, but the sun is shining ahead.

Monday, July 10, 2017

Birthday Wishes

As you may or may not know, KK would have turned 15 on July 28. To honor her, I have set up a Birthday Wishes Campaign in her memory.

Birthday Wishes is an organization that KK and I have enjoyed supporting over the years. I will be making cakes for two shelters celebrating multiple birthdays at the end of July. Would you consider giving a gift to Birthday Wishes in KK's memory so they can continue to throw birthday parties for kids living in homeless shelters in our area?

Here is the link to KK's Birthday Wishes Campaign. Please pass this along to those you think may be interested in honoring KK in this way as I don't know how many people still read this blog.

Tuesday, June 27, 2017

Loaded Questions

Shortly after KK died, I told Daryl, our associate pastor, that there are two questions people should not be allowed to ask someone who is grieving: "How are you?" and "What do you need?"

How are you?
I've always hated this question for two reasons:

  • We (I mean me) ask it so flippantly. One Sunday when I was in my early twenties, I remember my pastor asked me if I really wanted to know how he was when I asked him how he was. It really made me think.
  • We feel compelled to ask "How are you?" in return. Over the years, I have caught myself replying "I'm well. How are you?" then walking off without waiting for the other person's answer. Obviously, I didn't want to know how they were...and that is so not okay.

Right now, I don't know how to answer people when they ask me how I am. When I'm asked in real life or on the phone, I almost always tear up and have a hard time speaking. When I'm asked via text, I tear up and put the phone down. Most times I don't have the energy to "go there". Sometimes I wonder if the person really wants to know or if he/she just wants me to say that I'm doing well. If you really want to know, be forewarned that the answer may be messy. I have my good days and my bad days...or, more accurately, I have my good moments and my bad moments within each day.

What do you need?
Oh, man...I really don't know how to answer this question. The only thing that I need is my girl back. Other than that, I often have no idea what I need or what you can do to help. And when I do know, I don't want to impose upon you. You have a life. You have a family. You don't need me to add to your plate.

So, what's a person to say or do?
Rather than asking these questions, I would suggest the following:

  • Let the person grieving know that you are praying for them and thinking about them. 
  • Make it known that you don't expect a reply or a call or a thank you.
  • Don't put the responsibility on the grieving person to contact you. 
  • Try to think of what the other person wants, not what you would want (i.e. you may want a hug, but hugs may be overwhelming to others me).
  • Offer to do something specific (go out to eat, make a meal, etc.), but be okay with a "No, thank you" or a last-minute cancellation (the person may be doing well when making plans on Monday, but who knows what Tuesday will bring...grieving is exhausting).  
  • If you really want to know how the person is doing, ask specific questions and be prepared to listen. Even then, consider the setting before you ask. The answer could be messy and the grieving person may not want to fall apart in front of a room full of people.
  • Finally, don't text or call early in the morning or late at night even if you know the person is a morning person or night owl. I'll say it again, grieving is exhausting. Sleep is a precious thing and sometimes it doesn't come easily.
I feel the need to mention a couple more things:

  • It is okay to talk about your life. My loss and grief do not minimize what you are going through. I need to get out of my own head and think about others.
  • It is okay to talk about KK...just remember to consider the setting and be okay with a "not right now" kind of response. I love her and miss her terribly. I want to know that she had an impact on your life, that you think about her, and that you miss her too.

Monday, June 26, 2017

When My Heart Is Overwhelmed

I first listened to this two weeks ago and needed to hear it again today...

I Need to Write

I've had a desire to blog over the last month -- to share the events of KK's last four weeks, to recap her celebration of life for those that weren't able to make it, to share about HCA's eighth grade graduation and other events that have happened -- but I haven't been able to find the words.

Today, I find myself needing to write. I need to write about none of the above. I need to write to get out of my head. I need to write because I am overwhelmed. I need to write, so here I go...

The week after KK died (oh, how it hurts to write that) and before the celebration of her life, I stopped by the office and talked to Boss. He laid out his plan for me in terms of work with the caveat that I could override his plans. His thought was that I would take the month of June off, come back part-time in July and August, then full-time in the fall. I immediately knew that I would not be able to take the month of June off. First of all, I love my job. But I also knew that I didn't want to sit home alone for a month...alone being the keyword. I told him that I was planning to work the following week, but I wasn't sure what that would look like. He was very understanding and willing to give me the flexibility that I needed.

I wasn't very productive the first week, but it felt good to be in the office. The next two weeks, I really threw myself into work. I spent time working on details that I have had to let slide over the last couple years, because I simply didn't have the time with all of KK's treatments. I loved the feeling of accomplishment! However, I was completely exhausted by the end of last week. I was really looking forward to relaxing on Saturday...the introvert in me needed the downtime. What I wasn't expecting was how overwhelming the loneliness would be by Saturday evening.

I don't know how to do this.

Please note that I am not writing this to garner invitations to do things (remember I am an introvert and that can be overwhelming as well) or to make anyone feel bad...I just needed to write.

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


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.

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


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 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


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 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