Uneasy

KK recognized and communicated that her stomach was feeling "uneasy" on Friday and Saturday night! It sounds strange, but I am so thankful she was able to tell me early enough to do something about it.

Recognizing Nausea

Even with our new Zofran schedule, KK threw up today. Basically, until KK is able to recognize and communicate that she is feeling nauseous before she throws up, it is a guessing game for anyone taking care of her.

KK was out to eat with some friends from the homeschool co-op when Jenna called to tell me that KK didn't look quite right and that she was very quiet. I told her to give her Zofran and have her put the DigestZen oil on her stomach. I also made sure she knew that KK had a vomit bag with her. I hung up the phone and packed up as quickly as I could to go get her. 13 minutes later I received a text saying that she threw up. From my understanding, KK started throwing up minutes after taking the Zofran. Unfortunately, she had not yet used the DigestZen oil. I asked KK to try to remember how she was feeling when Ms. Jenna first asked her if she was okay so she will be able to recognize that feeling so we can help her before she throws up.

Therapies

KK began Physical Therapy and Occupational Therapy at Whittier Rehab two weeks ago. Speech Therapy begins in November.

She works so hard. I am so proud of her! 

Round Three

A little background info to help you appreciate today's events...
The scheduling nurse at Jimmy Fund called last week to tell me that our clinic day would be on Wednesday instead of Tuesday because the clinic is extra busy on the Tuesday after a holiday. I had to tell her that wouldn't work for us because we already had multiple meetings and appointments scheduled for Wednesday. She was able to work us back into the Tuesday schedule with our normal check-in time of 10:45am (I requested this check-in time a couple months ago in order to avoid traffic on the way into Boston).

KK and I went to HCA for chapel this morning. We left there in plenty of time to get to Dana Farber before our check-in time...in fact, we should have had 20 minutes to spare. Unfortunately, we hit quite a bit of traffic and ended up being almost 10 minutes late. I felt awful knowing that they were already squeezing us in. I was surprised when they called us in for vitals and blood draw almost right away...I thought for sure we were going to have to wait. The blood draw went so smoothly! NOTE TO SELF: Today's nurse introduced us to Skin-Prep to help the tape stick to KK better...I have to remember to ask for this in the future.

We picked up KK's lunch and returned to the waiting area until our appointment with the nurse practitioner at 11:30am. KK barely had two bites of her lunch when they called us back. I was shocked. It turns out that the two patients scheduled before us had not shown up yet. Nurse Mary Ann checked in with us about the last couple of weeks, examined KK, convinced a crying KK to get a flu shot, then checked to see if the lab results were back -- fully expecting them to not be ready since it had only been about 30 minutes since the blood draw and it usually takes 60-90 minutes before they get results back. She was surprised that most of the results were already back. The only set that was missing included the ANC (Absolute Neutrophil Count) which is the count they use to determine if KK can start the next round of Temozolomide.

We returned to the waiting area until the infusion appointment at 1:30pm. I checked MyChildren's Portal on my phone around 1pm to see if the lab results were available. KK's ANC was 980 -- just under the minimum 1,000 they would like it to be -- so I wasn't sure what was going to happen with her treatments. Just before 1:30, the infusion nurse came to get us and told us they were going to go ahead with both the Avastin and Temozolomide. So KK settled in for the 30-minute infusion.

The only thing that took longer than expected (aside from the drive in) was getting the Temozolomide from the pharmacy. It took so long that I wasn't with KK when the nurse took the needle out of the PowerPort and gave her the flu shot. KK told me that the shot didn't hurt as much as she thought it would and that she didn't even cry.

We hit no traffic and arrived home at 4pm...just in time for the first dose of Zofran.

We are so thankful for a quick and easy clinic day today!

Looking ahead...
KK's blood counts will most likely drop each month because of the Temozolomide. Please pray that they will bounce back enough every 4 weeks so we can stay on schedule through the next two months. Otherwise, it may impact our trip to Disney in December.

LEAD Useful Lives

Spiritual Emphasis Week at Holden Christian Academy is a favorite for both KK and I. The team from Coastlands Consultants does a tremendous job bringing God's Word to the kids (and adults that attend chapel) each day.

This year's Spiritual Emphasis Week happened two weeks ago. Thankfully, our schedule allowed us to attend on Monday and Tuesday. The message that Mr. Huffman brought to the middle schoolers was to L.E.A.D. Useful Lives. He emphasized that God has put us on this earth at this time for a reason. The verse he began with was Psalm 39:4:

Show me, O LORD, my life's end and the number of my days;
let me know how fleeting is my life.

Unfortunately, we had to leave a little early on Monday due to Physical Therapy and Occupational Therapy appointments at 10am in Westborough (a 35-minute drive from the school). Mr. Huffman emailed me that night concerned that he may have upset KK with the topic. I didn't think she was upset and KK confirmed this when I talked to her the next morning. She understands better than most 13 year olds that God is the only one that knows the number of our days. It was important for her to be reminded to not live a self-centered life and to live her life with and on purpose.

Catching a Cold and Catching Up

I am a bit behind in updating the blog due to a terrible cold that wiped me out last week. I'm on the mend, but I think KK may have caught it. We will both be wearing masks at clinic tomorrow so we don't share this with anyone else with a compromised immune system.

Speaking of compromised immune systems, the nurse practitioner told us that we should have flu shots when we were at the last clinic day. KK's eyes widened when she heard that and I knew she didn't want a shot as she looked at me pleadingly. I told her we would talk about it, but I have yet to convince her otherwise. I have to keep in mind that this is the kid that would rather throw up than take steroids, so I'm not surprised that she would rather get the flu than have a flu shot.

This week should begin our (really, KK's) third round of Temozolomide (chemo pill). I say should because it will depend on her blood counts. KK is more anxious about the needle for the blood draw and Avastin infusion than starting another round of Temozolomide. By the way, I have reset my alarms for the new Zofran schedule and I have the DigestZen oil in a prominent place so we can ward off any vomiting this time.

The next MRI is scheduled for Wednesday, October 28. I believe God is working as I look at KK's outward appearance and see her stamina improve; I am looking forward to seeing the healing from the inside!

From Virginia to Oregon to Disney

A group of college kids biked across America earlier this year raising money for Glioblastoma. Shortly after their journey began, we found out that KK had a Glioblastoma Multiforme brain tumor. One member of the team is from Chapel and found out about KK's diagnosis from her mom. The team decided to give the money they would raise to KK and I to do something fun.

What could be more fun than Disney?

This weekend, I booked our flight, reserved a hotel room, placed dining reservations, and bought tickets to Mickey's Very Merry Christmas Party. I am so excited that KK will see Disney at Christmastime!

Thanks Caroline, Susannah, and Ani!

Typical

I am starting to see what is typical for KK on a 5/28 day Temozolomide cycle. I want to make sure I document how KK did on the second round of Temozolomide as I did for the first here and here.

The second round of Temozolomide (oral chemo) was pushed off a week because of the PowerPort replacement surgery on September 4. The dose was upped from 220mg to 300mg (the highest dose she will receive).

KK started the Temozolomide on Tuesday before bed. Unfortunately, she threw up on Wednesday morning when I slept through my Zofran alarm. She threw up a second time on Friday just minutes before she was to take the Temozolomide and Zofran. I gave her the Zofran and rubbed DigestZen oil on her tummy, then let her rest before she took the chemo pills. She was nauseous on Saturday, so I used the DigestZen oil and it seemed to help. NEXT TIME: I am considering giving KK the Zofran at 4pm and midnight.  With an additional dose at 8am if she needs it. I also need to remember to use the DigestZen oil proactively.

This time around, she only had one headache (on Thursday). She took a Tylenol and was fine.

After the first round, KK threw up on Monday and Tuesday, so I wasn't surprised when KK told me she felt nauseous on Monday and Tuesday this time around. I rubbed DigestZen oil on her stomach and she laid down for a few minutes. Thankfully, she soon felt better and didn't throw up.

KK was a bit more tired while taking the chemo, but she recovered quickly this week.  She even went without a nap a few days this week.

School Days

Doing school work while waiting for her Avastin infusion at Jimmy Fund Clinic

KK started homeschooling/tutoring 2 weeks ago. She is really enjoying it so far. 

The history is literature-based, so she is devouring it.

The twitching in her right arm means writing is a bit laborious, but it doesn't seem to phase her.

The math is all review right now. I am so proud of how well she is doing, especially considering she hasn't done any math in five months. I have been having flashbacks of drilling her on the steps to adding, subtracting, multiplying and dividing fractions while tears streamed down her face because her neck hurt and her head ached so bad. I am amazed at how much she remembers.

By law, the town is supposed to provide tutoring. Unfortunately, I don't think that is going to work for us. I do not want to use their curriculum (don't get me started on Common Core or Learning Through Technology). I also don't think a strict tutoring schedule is going to work with the unpredictability of KK's stamina. Thankfully, our friend, Jenna, is willing to tutor her a couple days per week and understands that KK may need to take a nap in the middle of those days. 

Goals Met

When KK was at UMass, the Occupational and Physical Therapists asked her what her goals were. She told them that she had two goals: to read (this was when she was struggling with double-vision) and to help in the nursery at church again.

Back in June, she read her first book cover-to-cover and I wept with joy.

Today, she helped in the nursery and my heart was full!

Zofran Alarm

The last round of Temozolomide, I gave KK an 8mg dose of Zofran (anti-nausea medicine) at bedtime with the chemo and a 4 mg dose 8 hours later (usually around 4am). This seemed to work well, so we decided that we would replicate it this round. Last night, I placed the 4am dose of Zofran in a medicine cup and turned on my Zofran alarm (yes, there is an alarm labeled Zofran on my phone) before I went to bed. Unfortunately, I slept through the 4am alarm. When KK woke up to go to the bathroom at 6:30, I bolted upright realizing I slept through the Zofran alarm. I asked her how her tummy was and she said it didn't feel so good. I gave her the Zofran and she immediately asked for a bucket and threw up. Now I know for sure that KK needs the second dose of Zofran 8 hours after the first.

Pray for KK as her body adjusts to the higher dose of Temozolomide and pray that I don't sleep through any more alarms this week.

Yay...Nooo...Phew!

Last night, KK prayed, "God, please let the PowerPort work tomorrow. I don't want to be frustrated. If it doesn't work, I know you have a plan for me."

Yay...

KK was nervous going into the blood draw this morning. She started crying as Nurse Jill prepped the PowerPort area. Jill and I were so excited to see a flash of blood right away. KK was still a bit worked up and didn't notice the flash or us celebrating. I tried distracting KK by asking her to tell Jill about the Patriots game. After talking about the game for a few minutes, KK looked down and noticed that blood was filling the vials and she was so happy. It made me laugh to think that most people hate the sight of blood and here we were celebrating.

Nooo...

Today's Avastin infusion was supposed to be given over a period of thirty minutes (down from 60 minutes on August 25). However, the infusion machine had other plans. It kept beeping and saying that the line was occluded. (I can't tell you how much I hate the sound of that beep...when KK was in the hospital, it happened so many times while she was sleeping because she would bend her arm to get comfortable and the IV line kinked.) KK, Nurse Leah, Nurse Jill, and I were like, "Nooo..." 

Phew...

I left the infusion room to get the Temozolomide from the pharmacy while the nurses tried to figure out why it was occluded for the sixth time. As I walked away, I texted a couple people and asked them to pray. When I returned, the nurses finally figured out that the needle was not fully inserted into the port. The needle was fully inserted earlier in the day, but the tape that was used to keep it in place did not stick well and the needle came out just enough to "occlude" the line. All of us breathed a huge sigh of relief. After all was said and done, the infusion took about 40 minutes.

Praise God for answering these prayers in the affirmative!

This Week's Treatments

Tomorrow is Clinic Day.  The first one since the PowerPort replacement surgery.

KK is scheduled for a blood draw at 11:45am and Avastin infusion at 3:00pm. We would both appreciate prayer for the new PowerPort to work.

The second round of Temozolomide begins tomorrow as well. The plan is that the dosage will be increased to the appropriate level for KK's height/weight since she handled the lower dose well. Though this could change depending on her blood work. Please pray that KK will be able to handle this dosage well. I would appreciate prayer that KK will be able to recognize and express if she isn't feeling well so I don't have to ask incessantly, "Are you okay?"

Go Pats!

Going to the game!

It is loud...
and I'm going to make it louder!

Tailgating at its finest!

Thanks to a great friend, we had amazing tickets to the Patriots game on September 10! KK stood cheering and yelling for 4 hours. She (and I) loved every minute of it. As KK said, "I am your daughter!"

Super Bowl banner unveiled!

Go Pats!

New Super Power

Thank you for praying for today's surgery.

We didn't hit any traffic on the way in and arrived at the hospital 45 minutes ahead of schedule.

NOTE TO SELF: If you arrive early, you do not have to check in early...if you do, you will wait in the Pre-Op pod that much longer.

KK was happy to hear that the anesthesiologist would put her to sleep before inserting an IV. She cried a little bit after the surgeon met with us, but she was still calm enough to go to the OR without any meds to help her relax.

The surgery itself went well. The doctor removed the original PowerPort on her left side and placed a new one on her right side. Now that it is on the right side, the possibility that the catheter can kink has increased slightly. Please pray that there will be no complications with this PowerPort.

KK is very tired and a little sore, but she is as sweet as can be. She charmed the doctors and nurses. The nurse in the PACU told KK she wanted to adopt her. After I told the nurse I already had dibs, KK held her hand and said, "You can't adopt me, but you can be my new friend."