Monday, August 31, 2015

Return to Normal

Most people know that KK is an avid reader. As MassHOPE was setting up for their Used Curriculum Sale in June, she chose a book from the free table and started reading the book cover-to-cover. She fell asleep reading that night and woke up reading the next morning. It was pure joy for me to see her doing something she loves. It was amazing. It was normal.

Besides reading, KK also loves to write. Along with a book, she would often be seen carrying a notebook or binder and pencil. She was constantly writing stories...not always finishing, but always starting. She hasn't written very much since April because the right-sided weakness makes it very difficult. On our way home from Boston on Tuesday, KK started sharing an idea she had for a story. She was so excited and so animated. I encouraged her to write down her ideas. She pulled out a notebook and started writing. It has been laborious as she works hard to control the twitching, but she continues to add more to her story each day. It does my heart good to see my girl return to normal!

Wednesday, August 26, 2015

If You Give KK A Catheter... will probably clog.

We spent another long day in Boston on Tuesday.

We arrived at the Jimmy Fund Clinic at 10:45am. KK's vitals were taken then the nurses tried to draw blood through the PowerPort. It didn't work. In fact, it has only worked well one time. After the last failed attempt to draw blood through the PowerPort, the nurse practitioner ordered a line study at Children's Hospital for 1:15pm on Tuesday. The hope was that the line study would reveal they could do the infusion through the PowerPort even though they aren't able to draw blood.

Unfortunately, they had to do labs before the line study and infusion. I asked them to insert an IV to do the blood draw...that way KK would only need to be stuck once in case the line study revealed that they couldn't use the PowerPort for the infusion later. After several attempts, they were able to get enough blood for the labs, but they were not able to place an IV successfully.

At this point, it was 1pm and we had to hurry over to Children's. The line study revealed that the catheter was clogged and they would not be able to do blood draws or infusions with it. So we headed back to the Jimmy Fund Clinic to give them the bad news. KK cried (and I think the nurses wanted to cry as well) as they continued to have trouble placing an IV. They were finally able to place the IV just before 4pm. We then waited for the pharmacy to send up the Avastin bolus. Thankfully, this week's infusion was done over 60 minutes rather than 90, so KK was done just after 5:30pm.

I asked KK if she wanted to get the PowerPort fixed (another surgery) or just have blood draws and infusions through an IV. After the difficulty placing an IV, it is no surprise that she wants to try to fix the PowerPort. She is scheduled for surgery #11 to remove and replace the PowerPort catheter on Friday, September 4.

Tuesday, August 25, 2015

For the Record

I just want to document how things went from a health perspective last week (week 2 of the 28-day cycles).

As mentioned here, KK handled the five days of chemo pretty well....a little more fatigue and a few more headaches by the end. With each dose of Temozolomide at bedtime, I gave her an 8mg dose of Zofran then a 4mg dose of Zofran 8 hours later (around 4:30am). She finished taking the five doses of Temozolomide on Saturday, August 15 and the last 4mg dose of Zofran on Sunday morning.

On Monday, KK had her second oncology massage which she loves. Her massage therapist, Mieka, is wonderful. After the massage, we headed up to Sunapee, NH. KK did pretty well all day. After talking to Nannie on the phone that evening, she casually went to the bathroom and threw up. She didn't look or sound "off" beforehand, so it took me completely by surprise. She said she felt fine afterwards.

On Tuesday morning, we went to a quaint little museum in Warner, NH. When we got to the museum, KK looked "off" so I asked her what her numbers were. She confirmed that she had a headache, so I gave her a Tylenol. By the time we left, she said her pain level was coming down, so we went to a nearby restaurant for lunch. Just after we sat down, KK got up and walked to the bathroom. When she got back, she simply stated, "I threw up in the bathroom." She seemed better afterwards.

Around lunchtime on Wednesday, KK had another headache and felt nauseous. I gave her a Tylenol for the headache, but I forgot the Zofran at "home" (you would think I would have it with me 24/7 after the last two days, but no). Thankfully, she never threw up and the headache subsided after about an hour.

I have no idea if these episodes were lingering side-effects of the Temozolomide or not. I emailed a Glioblastoma group to see if what KK was experiencing was "typical", but most of the responses were along the lines of "everyone is different". So, I hope that documenting these things will help me understand what is typical for KK during each 28-day cycle. I also hope that this will help other families that are traveling this road when they wonder what they might expect.

Monday, August 24, 2015

A Relaxing Vacation

A dear friend allowed us to use their vacation home in Sunapee, NH last week. It was a nice change of pace. Unlike most of our vacations where we hit the ground running in the morning and fall into bed at night, we kept it pretty simple. It was the perfect place to relax. KK's favorite part of the entire week was swimming (her first time this year) at night (her first time ever).

When we got back on Friday, I found out that the local drive-in was playing Minions and Inside Out. Since KK had a headache when we tried to see Inside Out a couple weeks ago, I thought this would be a fun way to see it again. So KK took a nap, then we headed to her first drive-in movie. It was a perfect ending to a wonderful vacation.

Sunday, August 16, 2015

Fatigue and Headaches

KK (and I) would like to thank everyone for praying for her this week.

She handled this round of Temozolomide pretty well. She did not experience any nausea or vomiting. She was increasingly tired throughout the week and she has had slight headaches yesterday and today. Nice long naps, some essential oils, a couple doses of Tylenol, and prayer have helped.

From what I've read, fatigue and headaches are pretty common at the end of five days on Temozolomide. (Deep breath...headaches do not always mean swelling.) However, I have not been able to figure out how quickly the headaches typically dissipate after day five...I will keep track of this for the next cycle.

Thursday, August 13, 2015


Today is our Gotcha Day! I can hardly believe it was 7 years ago today that KK came home.

We started celebrating with a midnight ride to try and find a dark place to watch the Perseid meteor shower. We found a place and sat outside snuggled up in our blankets for a while. We didn't see any "shooting stars", but KK said she was content just seeing so many stars (we so need to get away from the lights of the city more often). Maybe we'll try to see the meteor shower tonight...from our back deck. 


And Now...

UPDATE: We laid out on the deck during half time (Go Pats!) and we were both able to see a "shooting star". 

Tuesday, August 11, 2015

28-Day Cycles Begin

KK began taking the higher dose of Temozolomide tonight and will continue to do so through Saturday night.

Please pray for the side-effects to be negligible.

I was told to expect more nausea than she had with the low-dose she took during radiation. The only nausea she experienced then was due to swelling and not to the chemo, so I'm not sure what to expect this week. I plan on waking her up at 4:30am to give her another dose of Zofran (anti-nausea medicine).

If she is able to tolerate this dosage well, then they will raise the dosage again next month.


This morning, I noticed that there are fine hairs starting to grow on "my baldy" (a name I have affectionately called KK over the last couple of months). I had read that hair regrowth may begin 2-3 months (longer in the "focal zone") after radiation is complete. True enough! It has been just over 9 weeks since we had our "Buzz for KK" and 7 weeks since KK had her last radiation treatment. KK is happy. I am so excited for her. Poor girl has to deal with me touching or kissing her head every time I am near her.

Monday, August 10, 2015

Good Day at Gillette

KK is having a great day today! I can hardly believe it was just 3 days ago that I was so worried about increased cranial pressure. The difference is night and day when the swelling is under control. Thank you for praying...God is answering!

KK and I were doing a few errands this morning when I noticed that she was walking better than usual. She was keeping up and I even saw her "jog" a few steps without even thinking about it.

Of course, I want to make the most of every good day. The fact that this good day was happening on the same day that the Patriots Training Camp was open to the public... well, I couldn't resist! So, at the very last minute, we asked our friend Josiah if he wanted to join us and we headed to Gillette.

So grateful for these moments!

Saturday, August 8, 2015

Love My Girl and My Jesus

As I cried and prayed aloud last night for KK's headache to go away, the vomiting to cease, and the swelling to decrease, KK kept reminding me that Jesus loves her. She tried to tell me that she was fine, but then I would hear her humming "Jesus Loves Me" and I knew she wasn't fine. Eventually, she started singing "Jesus Loves Me" replacing the "me" for "you" to reassure me that things would be okay.

God was gracious to both of us and her pain subsided before she went to sleep. After I tucked KK into bed and thanked God for answering our prayers, KK prayed, "Thank you, God, for my mom who told me about You from the depths of her heart."

I love KK's heart and am so grateful that she knows my Jesus!

"I love the Lord, for he heard my voice; he heard my cry for mercy." 
~ Psalm 116:1

Friday, August 7, 2015


I did a lot of research today trying to find an alternative to steroids that will be okay to take with Avastin. I found out that there is another kind of NSAID that is not a blood thinner and does not affect platelet function or bleeding time: Celebrex.

I emailed the nurse practitioner to see if we could try it. She does not think that it will reduce the brain swelling...but they didn't think Naproxen would reduce the brain swelling either. However, they do have patients that take Celebrex as a part of their treatment protocol because it has been shown to have anti-tumor properties, so she was willing to give us a script for it.

Please keep praying for a decrease in swelling. KK had a headache this evening that was so bad she was crying and ended up vomiting (before the script was filled).

Please pray for peace for both of us. I really struggled tonight seeing KK hurting so much.

Pray for a Decrease in Swelling

In early June, KK asked the doctors if she could stop taking the steroids because she hated the side effects. (I posted about it here.) The steroids were prescribed to reduce swelling during radiation. The doctors gave her permission and she took her last dose of Dexamethasone on June 7.

Over the next couple of weeks, KK began to experience increased vomiting and even double vision due to the swelling. I started giving KK the Naproxen (an NSAID - Non-Steroid Anti-Inflammatory Drug) her primary care doctor prescribed back in April to see if that would help reduce the swelling. Thankfully, the vomiting began to subside over the course of 2 weeks.

At the Brain Tumor Clinic last week, I was asked to wean KK off the Naproxen. The doctor and nurse practitioner were concerned about drug interactions with Avastin. We reduced the Naproxen that week and KK took her last dose on Monday, August 3.

Since then, she has thrown up twice, felt like she was going to throw up three other times, and has had an achy feeling in her head...definite signs of increased swelling. The doctor and nurse practitioner would like KK to go back on Dexamethasone.

KK doesn't want to take the steroids again, but she realizes that she may have no choice. Please pray for God to reduce the swelling.

Wednesday, August 5, 2015

New Chemo Protocol

The chemo protocol that KK will be receiving this time around includes Temozolomide and Avastin. It will be administered over the next year.

The doctors tested Charlie and confirmed that the tumor had markers that would be sensitive to Temozolomide. Temozolomide, also known as Temodar, is the chemo pill that KK took during radiation. She took 140mg on an empty stomach right before bed with a dose of anti-nausea medicine called Zofran. She tolerated it really well...she didn't experience any nausea and blood counts dropped a bit but not enough to be concerned.

For this round, they are increasing the dosage from 140mg to 220mg. They will increase the dose to 300mg next month if she is able to tolerate 220mg well. KK will take Temozolomide for 5 days followed by 23 days off. The doctors gave me a packet of information with possible side effects, but I wanted to know what they typically see. I was told that KK may feel a little more nauseous than before and she will probably need Zofran in the morning in addition to bedtime. They also said her blood counts will likely drop on week 3, so they will continue monitoring things like red blood cells, white blood cells, and platelets.

Avastin, also known as Bevacisumab, is the new chemo drug that KK will receive. It is given as an infusion every 2 weeks. The first infusion is given over 90 minutes. If it is tolerated well, the second infusion is given over a period of 60 minutes. Again, if that is tolerated well, the subsequent infusions will be given over a 30 minute period. The hope is that this drug will stop new blood vessels from forming thereby cutting off the cancer's "food supply".

KK received her first infusion yesterday and did pretty well. She was exhausted by the end of the infusion. However, there were multiple reasons why she would be so exhausted, so we cannot blame it on the infusion. KK did wake up at midnight and threw up. I assumed it was due to the Avastin, but the nurse said that they don't usually see vomiting with it. We will give her Zofran with the next infusion just in case.

Tuesday, August 4, 2015

First Infusion

Today has been a long day. 10 hours and 10 minutes from door-to-door long. Thankfully, though, we are home.

We left at 9:30 this morning for a 10:45 check-in and 11:00 blood draw. The inability to draw blood through KK's port at the MRI last week did not resolve itself and the more-experienced-with-ports clinic nurses were not able to draw blood either. They ordered tPA (tissue plasminogen activator) to see if that would declot the line. 

While we waited for tPA to arrive from the pharmacy, we spoke with the nurse practitioner, Mary Ann, and our new oncologist, Dr. Manley. There was confusion when the next round of chemo would start when we were at the clinic last week. Originally, I thought it would start today; after last week, I was under the impression that we would start next week. Believing the latter to be true and knowing we would need to be at the clinic every two weeks for the Avastin infusion, I planned a little get away for the week of August 17. The nurse practitioner was under the assumption that KK would have an infusion today, but she said we could do it next week instead. I asked if it was possible to do the infusion today then the next one in three weeks rather than two. I am so grateful that they agreed to this (one less trip to Boston...yippee!). 

After our meeting, our nurse, Jill, inserted the tPA, then we waited an hour to see if it would work. 


Not a single drop of blood.

They decided to order a second dose of tPA from the pharmacy.

Calculating how long it would take for the tPA to arrive from the pharmacy (approximately 30 minutes), how long the tPA needed to sit (at least 60 minutes), how long the infusion would take (90 minutes), and how late in the day it was, they realized that we couldn't wait to do the infusion through the port. They explained that the Avastin was already ordered and that it had to be administered the same day. This meant that they would have to insert an IV for the blood draw and infusion. We asked for the Lidocaine spray that we were introduced to last week at the MRI, but they didn't have it at the clinic. KK cried. The nurse did a great job though and she was able to get a vein on the first try. It drew blood very slowly, but it worked. So, KK sat back and read for the next 90 minutes. By the end, she was completely exhausted and ready to be home.

They gave KK the second dose of tPA while she was receiving the infusion through the IV. Unfortunately, it didn't work either. At our next visit, they will access the port and try to draw blood when we arrive. If it works, KK will receive the next infusion of Avastin right away. If not, we will head over to Children's for a line test. They will inject a dye into the port then use an X-ray to see what is going on. If they aren't able to fix it, KK will have to have another IV for the blood draw and infusion.

KK would really appreciate your prayers for the port to work on August 25.