Tuesday, December 29, 2015

26 Hour Headache

KK's headache finally broke (do you say a "headache broke" like a "fever broke"???) around 3:00 today.

The girl amazes me! I would be curled up in a ball crying if I had a headache for 6 hours, let alone 26 hours, with no relief. Not KK. She completed Speech, Occupational and Physical Therapy, allowed me to drill her on her vocabulary and spelling flashcards ad nauseum, and did her reading for school tomorrow so she wouldn't throw Lucas off schedule. At one point, she was playing solitaire on her Kindle when I thought she was napping. I walked in her room while she was playing and she quickly shut the Kindle off then started crying. I asked her why she was crying thinking her pain level may have increased due to the strain on her eyes, but that wasn't it at all. She said, "I am disappointed in my choices. I should have been napping."

Thanking God for the privilege of being this girl's mom!

Monday, December 28, 2015

Thankful for the Blog

KK has had a headache most of today.

I saw her struggling while we were studying her vocabulary/spelling flashcards at lunch. I asked her if she was okay. She said she had a headache and that it was at a "1" (a 3 or 4 for most people) out of 10. She asked if she could have some peppermint oil. I didn't have it with me, so we applied it when we got home. At that point, I encouraged her to take a nap before we had to leave for her therapies.

After a 40-minute nap, the headache was still there. It definitely impeded her ability to do her therapies. All of her therapists were concerned. She was a trooper and did her best despite the pain. When we got home, we did more peppermint oil as well as frankincense (KK didn't feel it was necessary to take any Tylenol). The headache lessened to a "half" before she went to bed.

Unfortunately, the headache is still at a "half" (I asked her when she woke up to go to the bathroom at 11:15pm).

I am trying not to worry that this is related to swelling or tumor growth. I have been praying for relief for KK and peace of mind for me. I spent a couple hours tonight googling side effects of Temozolomide and Zofran trying to convince myself that the headache is due to the fact that she just completed 5 days of Temozolomide and 7 days of Zofran. Then, I realized I should search headaches on this blog. The search revealed these two posts: Fatigue and Headaches and Typical. I am so thankful that I have tracked these sort of things on the blog to remind me that headaches after chemo week are "normal" for KK.

Saturday, December 26, 2015

Sleepover

Every year since KK has been with us, my parents have come to our home on Christmas day. KK would decorate a birthday cake for Jesus while she waited for them to arrive. We would sing "Happy Birthday" to Jesus as soon as they got there and eat cake before lunch. Then, depending on the time, we would either open gifts or eat lunch. When all was said and done, KK would go home with Nannie and Grampy to sleep over their house for a night or two.

This year, we decided to go to Nannie and Grampy's to celebrate Christmas since the room where the tree and gifts usually reside is KK's bedroom during chemo weeks. 

Earlier this week, there was a bit of sadness in KK's voice as she realized that she wasn't going to be able to sleep over Nannie and Grampy's on Christmas because she would be taking chemo. I called my mom and we arranged a sleepover for Sunday night once KK was finished with this round of chemo.

Christmas Eve day, Nannie called and said that KK could sleep over Christmas night through Sunday evening. She said she would do the midnight dose of Zofran and my dad would do the morning dose. She even said she didn't mind taking care of KK if she throws up. This is a big deal...as kids, we always called for dad when we threw up (I did hint to KK that she should call for Grampy if she starts throwing up).

Pray for KK, Nannie and Grampy as God brings them to mind this weekend. Pray that they enjoy their time together and that the time is vomit-free.

Friday, December 25, 2015

Happy Birthday Jesus!



So grateful to celebrate the greatest gift of all
with this sweet gift from God! 


Thursday, December 24, 2015

Sore and Weary but Thankful

I struggled with writing this post. I am not looking to garner sympathy or anything like that, but this is part of our story. I share, so you can pray...

On our way back from Dana Farber on Tuesday, KK and I were rear-ended just 5 miles from home. The vehicle 2 cars ahead of us stopped short. The guy in front of me and I were able to stop, but the guy behind me was not able to stop in time. KK hit her head on the headrest, so I wasn't sure if she was hurt or not as she cried. When the police officer asked if anyone was hurt, I said I wasn't sure if KK was hurt or not, but she insisted that she was okay. As we waited for the police officer to fill out the paperwork, KK grabbed my hand and started thanking God that we were okay. Half an hour later when we arrived home, KK threw her hands up in the air and said, "Thank you, Jesus! Thank you, Jesus!" 

KK has since complained about her neck being stiff and sore. I brought her to the chiropractor (thank you, Dr. Dan) on Wednesday just to be sure she is okay.

I am tired. I am weary. I did not want to spend this week and next taking care of police reports, appraisals, rental cars, etc. 

But...

I am thankful. I am thankful that no one was seriously injured. I am thankful that my car is drivable until the body shop is able to work on it around the holidays.  I am thankful that the insurance should cover everything eventually (I understand that I will have to cover the deductible until Liberty Mutual is able to win the fight against the other insurance company).

"Come to me, all you who are weary and burdened, 
and I will give you rest." ~ Jesus

Tuesday, December 22, 2015

Back to Our Regularly Scheduled Program

KK's counts look good, so she begins her fifth round of Temozolomide tonight. Dr. Manley lowered the dosage from 300mg to 250mg so we can get back to a 28-day cycle.

We brought two concerns to clinic today: KK's peripheral vision on the right side and brown spots on her tongue. I noticed the issue with her peripheral vision while we were at Disney. She kept bumping into things on her right side when she was driving the scooter. They are going to schedule a visual field test, hopefully at one of our clinic days in January. I noticed the brown spots on her tongue last night...KK noticed them before last night but didn't think anything about them. The doctor said the spots are her taste buds dying which is normal for someone on chemo. (UPDATE: I just read on the American Cancer Society's website that "these dark spots are called hyperpigmentation. This is more common in dark-skinned people. The cause is not clear, it’s not painful or dangerous, and it goes away on its own after treatment ends.")


KK is fighting a cold, so she is currently sleeping through her two infusions.

Monday, December 21, 2015

O Christmas Tree

When you usually get a Christmas tree the week after the Kids Praise! musical and you spend that week at Disney World...

When you usually put a Christmas tree in the "futon room" where KK sleeps while she's taking chemo and she is scheduled to take said chemo the week of Christmas...

When you get a Christmas tree for $5.05 at Lowe's four days before Christmas...

It's {finally} beginning to look a lot like Christmas!

Sunday, December 20, 2015

Magic Kingdom

We had tickets for Mickey's Very Merry Christmas Party at Magic Kingdom for Friday night...4pm-to-midnight night.

Since we had time before we could get into Magic Kingdom, we drove over to Merritt Island to have lunch with my Aunt Pat and Uncle Dave. KK and Uncle Dave are two peas in a pod. They have been able to relate to each other in ways most people cannot understand: they have both experienced weakness on one side as well as double vision and they have both worked really hard to get better.


After a nice lunch, we headed back to Disney for 8 hours in the park. We enjoyed some of our favorite rides. KK wasn't quite up to riding Space Mountain or Big Thunder Mountain Railroad, but she was glad she got to go on the Seven Dwarfs Mine Train for the first time.

By the end of the night, the scooter's battery was just about dead. I put the scooter in neutral and pushed as much as I could. KK sweetly offered to walk even though she was completely exhausted. As long as we were on flat ground or on a decline, it wasn't too hard pushing the scooter with her in it. As we were leaving the park, I began to dread the ramp up to the monorail. Thankfully, there were so many people leaving at the same time that we only had to move a few feet at a time. Phew!

Thursday, December 17, 2015

EPCOT

Today has been a good day. We left the hotel room at 9:30am and didn't return until 10:30pm.

The peppermint oil saved the day a few times when KK was looking a bit off. It also helped that there was a little cloud cover in the morning and we weren't outside very much when it was mostly sunny.




We went to the Candlelight Processional this evening. It was amazing to hear the Christmas story read and the Hallelujah Chorus sang at Disney...glory to God!

Wednesday, December 16, 2015

Animal Kingdom

Today was our day to go to Animal Kingdom. If you know me at all, you know this is not my favorite park. Aside from my obvious disdain for animals, I find that this park is unusually hotter than all the other parks. Perhaps it is because the attractions are more spread out; perhaps it is because there is less shade. 

Anyway, we did a few rides and shows before lunchtime. At lunch, KK was looking a little off. After asking all the usual questions, I chalked it up to exhaustion and let it go. We headed over to see Festival of the Lion King. As we waited in a line that was getting longer by the minute, KK said that she had to use the restroom. I turned to ask a Cast Member if we could somehow save our place in line and she said she couldn't since we were in the "stand by" wheelchair lane and there were many people behind us. As I turned back to KK, she had the emesis (vomit) bag out and started throwing up. When she was done throwing up, she said she was better and wanted to see the show. There was no more room for ECVs at this point, so we told them KK could walk in. After sitting for about two minutes, KK asked if we could leave. When we got back to the scooter, she started throwing up again. 

Snuggling with her "something good"
We headed to First Aid to see if they had any emesis bags since I didn't have any more. We asked the nurse, James, for bags. While we waited, KK asked if we could pray...so we did. James then gave us a few airsick-type bags and asked KK if she wanted to lay down. She said yes, so he brought her back to a small, partitioned room with 4 cots. He gave her a light blanket and she rested for about 20 minutes. When KK came out of the room, she said she spent some time talking to God and she felt better. As we were leaving First Aid, James gave her a certificate for a free medium-sized plush so she could remember something good about the day (these are the things I love about Disney). KK felt well enough to go shopping for her free plush and do one more ride, It's Tough to be a Bug, before we left the park.

KK was hungry when we got back to the hotel, so we brought the scooter to our room to charge and walked over to the Food Court. She enjoyed a kid's meal as she read one of her new books. On our way back to the room, KK looked off again and asked to sit down. She sat for a moment before continuing on. She threw up almost as soon as we got back to the room. She slept for about an hour and a half after that. Thankfully, she is doing much better now.

I am pretty sure this was all due to heat exhaustion and not "Charlie", as this is not the first time KK has thrown up after a hot day in the sun. It dawned on me tonight that I should have used the peppermint essential oils to help cool her down. We will definitely use them tomorrow.

Hollywood Studios

KK and I had a great day at Hollywood Studios yesterday. We were in the park for 11 hours. We did all the rides and shows we wanted to save one, Toy Story Mania. The only reason we didn't do it was because we didn't want to wait in line for two hours. KK even went on Tower of Terror with me for the first time since she was little. She hated it then and has refused to believe that she might like it now that she is older. As we were waiting in line, she asked me if it was okay to cry and scream on the ride. I said, "Sure." She cried while we were in line, but she didn't ask to turn around. When the ride was over, she said, "It wasn't as bad as I remembered it." She even said she would go on with me again the next time we go to Hollywood Studios.


While we were waiting for lunch at Sci-Fi Dine-In Theater Restaurant, KK perused the bookstore next door and used her Disney gift cards to buy a few "souvenirs".

Tuesday, December 15, 2015

And We're Off!




We are in Disney!

KK is loving her wheels. I am so thankful for both the manual wheelchair and the motorized scooter. They have helped her make it through a very long travel day with a smile on her face.

She is a little timid on the scooter (which I thought she would be). I turned the speed dial up at one point and she wanted to turn it down. Once she figures out that I will be walking a little faster than a snail, I'm sure she'll crank it up a bit.


Friday, December 11, 2015

Ups and Downs

Today has been a day of ups and downs...

KK's platelets were up but still down...at least not up enough to proceed with treatment.

I don't ever want to postpone treatment, but KK immediately saw the positive in it...we won't have to worry about chemo at Disney!

Our next appointment is December 22, which means KK will be on chemo over Christmas.

At that time, they will most likely reduce the dosage of Temozolomide so we won't have to continue postponing treatments.

Thursday, December 10, 2015

Plan D is the New Plan A

I didn't hear back from the Department of Developmental Services today about the motor scooter. I left a message late this afternoon, but I'm not sure if this plan will work out or not.

We have a Plan D (that is quickly becoming Plan A) thanks to our friend Susan at church. She told her aunt and cousin in Florida about our plight. Her aunt used to work for a scooter company in Central Florida, so she is contacting the owner on our behalf.

I am thankful beyond words for people willing to go out of their way to help KK (and me).

UPDATE (Friday AM): Jim called this morning. He does not think the scooter they have is dependable enough for our needs. However, he is going to deliver a transporter wheelchair to us on Monday morning.

UPDATE (Friday PM): Our friend Susan secured a motorized scooter in Orlando for us with the help of her friend Jessica!

Wednesday, December 9, 2015

ECV Prayer Update

Thank you for praying for a motorized scooter for our trip to Disney

Oh how I love the physical therapists God has put in our lives. Our PT friends from church, Deb and Kelly, contacted everyone they knew to try to find a solution for us. On Monday, Jenn, KK's physical therapist at Whittier Rehab, suggested contacting REquipment to see if they might have a motorized scooter that we might be able to borrow.

After looking at REquipment's website, I noted that the Department of Developmental Services had a motorized scooter that had been "requested". I contacted DDS today just to see if it might be available next week. I spoke with Jim and he said that he has one that hasn't been cleaned or tested yet. He offered to work on it today to see if it is in working order and get back to me tomorrow. The one thing I don't know is if it is a portable scooter or not. If this works out, it would be an amazing blessing to have the scooter to use in the airports. Please pray that the scooter is in working condition and that it is portable so we can transport it in the rental car.

I do have a Plan B if this doesn't work out. I found a DME (Durable Medical Equipment) place in the Orlando area that will allow kids/teens to operate their equipment. And, of course, we always have Plan C: get a manual wheelchair...when I told KK that we may not be able to get a motorized scooter, she said, "I think it would be fun to push myself around in a wheelchair".

Thank you for continuing to pray for this situation. I am so grateful that we have a God that answers prayer!

Tuesday, December 8, 2015

Decisions


KK's platelet count was low again today (50), so she was not able to go ahead with treatment. We will return to Dana Farber on Friday to try again.

It is early in the 28-day cycle, since we had to postpone treatment 3 days last month. We are hopeful (and we are praying) that her numbers will be up on Friday. If KK's platelet counts continue to drop between now and Friday, they may do a platelet transfusion. If they are up (100+) then she will have the Avastin infusion and we will have to decide whether or not we want KK to start the 5 days of Temozolomide on Friday or wait until after Disney. KK and I are leaning towards beginning on Friday if her numbers are up, which means she will take the chemo pills for 2 days while we are in Disney.

Saturday, December 5, 2015

ECV Prayer Request

Just days after KK's fifth round of Temozolomide, we will experience long days, late nights, and lots of walking...at Disney!

I was hoping to rent an ECV (a.k.a. motorized scooter) for KK to use on at least two days. I have contacted Disney and multiple scooter rental places in the Orlando area about renting an ECV. For liability reasons, they will not allow anyone under 18 to operate an ECV. I spoke with someone at Give Kids The World to see if they might work with a company that rents to families with kids/teens that have mobility issues, but they weren't able to help. I have an email out to the Orlando chapter of Make-A-Wish to see if they might be able to help.

Please pray that we are able to find something that KK can use while we are in the parks.

Thursday, November 26, 2015

Thanks Giving

This Thanksgiving, I am giving thanks for:

This girl...

KK's great attitude. I tease that she should have been named Pollyanna. You can't help but smile when she chooses to have an extra hour of infusion and says, "It will give me more time to do my homework."

My parents who have made it possible to work on Sundays without worrying about KK.

Friends who understand my need for normalcy.

Jenna for tutoring KK -- understanding when she needs to be pushed and when she needs to rest.

A church family that has gone above and beyond.

A job that is flexible and allows me to take care of KK's medical needs.

Friends who connect us to the best medical care possible.

The best medical care.

Answered prayer -- immeasurably more than we can ask or imagine! (KK's platelets were in the NORMAL range this week!!!)

God's healing hand.

God's grace and mercy during the toughest moments.

Happy Thanks Giving!

"Be joyful always; pray continually; give thanks in all circumstances, 
for this is God's will for you in Christ Jesus." 
~ 1 Thessalonians 5:16-18

Monday, November 23, 2015

Girls' Weekend

KK was invited to a Girls' Weekend in Boston with other teen girls who have experienced cancer. They spent the night at The W Hotel in Boston, went on a shopping spree at H&M, saw Elf the Musical, had a makeover, and took part in a professional photo shoot. She was completely exhausted when Nannie and Grampy picked her up Sunday night. She said, "The best part of the weekend was meeting and spending time with other girls who understand what it means to be sick."


The picture of the bus whisking the girls off is the only picture I have as parents weren't allowed to go on the trip. I can't wait to see the pictures at the photo reveal!

Thank you to the Gordon Family for your generosity, to the Jimmy Fund child-life specialists for organizing this trip, and to the nurses and staff for taking care of and spoiling the girls! KK had an amazing time!

Saturday, November 14, 2015

Cathartic

Cathartic, in its fullest definition, is a good word to describe last night.

ca·thar·tic
/kəˈTHärdik/ 
   adjective
      1. providing psychological relief through the open expression of strong 
          emotions; causing catharsis.
      2. (chiefly of a drug) purgative.
   noun
      1. a purgative drug.

KK took the first of five doses of the Temozolomide before she went to bed last night. She woke up at 11:35pm and started throwing up. She continued to do so for about an hour and a half. I tried giving her Zofran, but she threw that up almost immediately. As I sat on the floor by her bed, KK asked me to put on the "Charlie" playlist. We listened to the lyrics of the songs as we cried and cried out to God. KK expressed how she hates feeling so yucky, questioned why she had to get cancer and why chemo had to make her feel so awful, reiterated her trust in God as she listened to one song, and changed the lyrics to another song (Fighter, by Jamie Grace) to personalize it:

          She's been here before
          And she's only {thirteen} years old
          But she knows the name of every nurse she sees
          And though she don't like the chemo
          She waits it out never losin' hope that
          Someday soon she'll be cancer-free

Finally, it seemed like she might be able to hold something down. I gave her another dose of Zofran, we turned on a movie and waited. After 30 minutes, I asked KK how she was feeling. She said her tummy felt a little off, but she didn't feel like throwing up. She and I praised God for giving her some relief. After another 30 minutes, she felt fine.

This morning, I asked KK how she was feeling. She cheerfully said, "I'm good. I guess when I have chemo, I just have to throw up at night sometimes. In a weird way, it felt good to get it out of my stomach."

So, yes, cathartic is a good word for last night.

Friday, November 13, 2015

Amazing Rebound

KK's platelets are up! They went from 50 on Tuesday to 106...yes, 106!

Nurse Jill (who drew KK's blood this morning), KK, and I were guessing what the platelet number would be. Jill said 96 so they could "override" it and go ahead with treatment, KK said 90, and I said 110 claiming that God was going to show up and they would be able to go ahead with treatment without having to override it.

Mary Ann, the nurse practitioner, said that if she was a betting woman she never would have guessed that they would more than double in three days. In fact, she expected them to be at 40. I told her I knew that God had this.

So, they were able to give KK the Avastin infusion today and she will begin the five days of Temozolomide (at the full dosage!) tonight.

And, for those that prayed for no disruption in our Disney plans next month, they are not planning to delay the next set of treatments as long as her white blood cell, ANC, and platelet numbers are good!

Tuesday, November 10, 2015

Low Platelets

KK's platelet count was too low to move forward with treatment today. The low platelet count explains the fatigue that she has been experiencing -- moving slower than normal, sleeping later, needing a nap mid-morning, even sleeping in the middle of the noisy waiting room at Jimmy Fund.

We will go back to Dana Farber on Friday for another blood draw. If her platelet count is high enough, she will receive the Avastin infusion and will begin the 5 days of Temozolomide. If it is not high enough, we will probably go back to Boston some time next week to try again. If the platelet count drops too much more, KK may have to have a platelet transfusion.

It is not ideal to postpone treatment, so KK's team will assess whether or not to lower the dosage of Temozolomide.

KK saw that I was struggling a bit today. She sweetly reminded me that she is doing good and God is healing her.

On a positive note, the nurse practitioner (who we didn't get to see on Brain Tumor Clinic day) said that Dr. Manley was very happy with the results of the MRI two weeks ago. I got that impression when he met with us, but it was good to hear it again!

Monday, November 9, 2015

A Few Prayer Requests

We would appreciate prayer for the following:

  1. Pray for the restoration of KK's muscle tone. KK continues to experience neck and back pain and stiffness periodically.
  2. Pray for peace. I continue to fight an internal battle not to panic when KK is in pain.
  3. Pray for minimal nausea and no vomiting this week as KK should begin the fourth round of Temozolomide tomorrow. 

Friday, October 30, 2015

Worry or Wisdom

KK and I had many conversations leading up to Wednesday's Brain Tumor Clinic. We prayed for God's peace, because she seemed pretty worried. KK wasn't worried about having the MRI (she is a pro at MRIs) or even the blood draw beforehand (which is what she usually worries about). She was worried about getting the results. I could see it in how she hesitantly walked from Children's Hospital to Dana Farber after the MRI. KK didn't want to know the results, because she didn't want to know when she was going to die. She said that God knows when she will die...until then, she wants to live!

Thursday, October 29, 2015

MRI Comparisons

I have uploaded similar batches of the MRI images from July and October for those that are interested in comparing them.

MRI images from July 29, 2015

MRI images from October 28, 2015

I wish I had the MRI images that were taken at UMass when KK was first diagnosed with the GBM. The tumor, swelling, and midline shift were so pronounced. Dr. Cataltepe had shown them to me, but I never got a copy. I'll have to contact UMass to get a disc.

Wednesday, October 28, 2015

Improving

KK and I were ready very early this morning.  Instead of sitting around staring at each other and twiddling our thumbs, we headed to Chick-Fil-A for breakfast then to Dr. Brooke for an adjustment. It was still early, but we headed to Boston anyway.

Since we had time to spare, KK and I decided to go to Brigham and Women's first to visit our friends in radiation. We haven't been there since June, so it was fun seeing their reactions to how well KK is doing!

We then checked in to MRI at Children's just before noon...still 45 minutes early. The 12:15 patient didn't show up, so they were able to take KK in early. KK did a great job as usual.

Afterwards, we went over to Dana Farber and checked in at the Jimmy Fund Clinic. The labs weren't back yet from the blood draw, so I knew we had to wait a bit. One of KK's nurses, Jill, brought a copy of the labs to me in the waiting room when they were ready. KK's white blood cell, platelet, and ANC counts were all up so I knew we would be able to move forward with treatment today.

Just after 3pm, the infusion nurse brought us to an infusion pod. I was confused because I thought we were going to meet with KK's team before the infusion. She started the Avastin infusion, then Dr. Manley met us there in the pod. He said that the scans looked good: the midline shift is better, swelling is down, and the remaining tumor is shrinking! He then quickly examined KK. I asked for a copy of the MRI images. Dr. Manley said he could mail a copy to me or I could go back to Children's to get a copy today. Of course, I chose the latter.

Once the infusion was done, we went back to Children's to get a disc with the images from today and July 29 for comparison. I will be visiting KK's pediatrician tomorrow so she can help me understand what I am seeing.

Thank you for praying. We are so grateful that God chose to answer prayer in such an amazing way!!!

Monday, October 26, 2015

Three Months

I can hardly believe it has been three months since many of you gathered with KK and I to pray for God's healing. The next day KK had an MRI that became the baseline from which the doctors will compare future MRIs. The first of which will be this Wednesday. I can't wait to see what God is doing! Please continue to pray for complete healing.

Sunday, October 25, 2015

Breathe and Pray

Last week was a test of my Post Traumatic Stress Disorder.

KK woke up on Monday with a stiff and sore neck. I had flashbacks to March when KK couldn't move her head. I breathed and I prayed.

I joked with KK that I was having a PTSD moment. I breathed and I prayed.

I brought KK to the chiropractor and cried (poor Dr. Brooke) as I explained what was happening while she got adjusted. I breathed and I prayed.

I told the physical therapist what was happening and she worked with KK on some neck stretches the entire time. I breathed and I prayed.

I scheduled a massage for Tuesday. I breathed and I prayed.

I asked KK a zillion times what her pain levels were. I breathed and I prayed.

I asked KK another zillion times if she had a headache or if she felt nauseous. I breathed and I prayed.

Each thing brought temporary relief. KK's pain level fluctuated throughout Monday and Tuesday, but she didn't have any other symptoms.

KK still had a little stiffness on Wednesday, but her pain level was on the low side. We went to the chiropractor then to PT and OT. She did really well at PT and OT -- they worked her hard. Just before bed, KK said that her back hurt. She laid down and tried to sleep. Within an hour, she was up asking for Tylenol for the pain.

It was then that my PTSD kicked into full gear.

I wish I could say I breathed and I prayed. Alas, I did not. Instead, I dove head first into a bag of chips.

I decided to email KK's team at Jimmy Fund to let them know what was happening (I had refrained from contacting them when there was only one symptom). As I typed everything that had been happening, I realized the back pain was probably due to all the upper body and core work she did at PT and OT.  I breathed and I prayed.

KK woke up on Thursday with no back or neck pain, just a little stiffness in her neck.

I hate PTSD.

I don't know if a stiff neck will ever be just a stiff neck...or a headache just a headache...or throwing up just...well, you know.

Sunday, October 18, 2015

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.

Friday, October 16, 2015

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.

Wednesday, October 14, 2015

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! 




Tuesday, October 13, 2015

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.

Monday, October 12, 2015

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!

Monday, September 28, 2015

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!

Saturday, September 26, 2015

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.

Monday, September 21, 2015

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. 

Sunday, September 20, 2015

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!

Wednesday, September 16, 2015

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.

Tuesday, September 15, 2015

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!

Monday, September 14, 2015

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?"

Sunday, September 13, 2015

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!

Friday, September 4, 2015

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."


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...

...it 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

Gotcha!

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. 

Then...

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.

Hair!

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

Celebrex

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.

Temozolomide:
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:
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. 

Nothing. 

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.

Wednesday, July 29, 2015

MRI and BTC Update

We are home (a significant event in KK's mind) and KK is exhausted. I am not sure where to start, so I'll just start at the beginning...

We checked in at Children's just before 11:45 this morning. When the nurse came out to get KK, she started talking about doing an IV for the blood draw and contrast. I was confused. First of all, I thought the blood draw was going to happen through KK's PowerPort at the Brain Tumor Clinic (BTC) at 3pm, so I did not put Lidocaine cream on her PowerPort ahead of time to be ready to access at the MRI. For some reason, I was also unaware that the MRI today was to be an MRI with contrast. In all honesty though, it probably wouldn't have registered with me to prepare KK's PowerPort to be accessed for the contrast even if I was made aware of it. 

As all of that was going through my mind, I saw the panic in KK's eyes. She is a hard stick and we had hoped that having a PowerPort would keep her from having to have an IV. I was able to convince the nurse to do the blood draw and contrast through the PowerPort. This meant that we would have to wait half an hour for the Lidocaine cream to work. So we went back to the waiting room for 30 minutes, then they brought KK back to a prep room for the blood draw. Well, blood draws with KK are always an adventure. After trying four times, two nurses were simply unable to draw blood through the PowerPort and they had to insert an IV after all. The nurses introduced us to a Lidocaine spray to numb the area where they want to place the IV -- we will definitely be requesting this for any future IVs! We were very thankful that the nurse was able to get a vein on the first try.

During this time, the people for the MRI came in three times to see if we were ready. By the time KK was finally ready, another patient had an emergency MR Vent Check which meant we would have to wait for KK's MRI. (KK and I are familiar with emergency Vent Checks and totally understood.) At this point, I called over to the Jimmy Fund Clinic to let them know that we were going to be late for our BTC. KK finally went in to the MRI at 2:05 and was done by 2:50. She slept through the whole thing.

We then headed over to Dana Farber to the Jimmy Fund Clinic where KK was able to eat a quick lunch before they called her back to meet with her team. When we met with the BTC team, they said that the MRI looked as they expected. Dr. Mimi explained that they want the virus (AdV-tk) that was injected into Charlie to create an immune response where her body, in conjunction with the anti-viral drugs that KK took for two weeks after the injection, would start attacking the virus and Charlie.  This response creates swelling (picture a cut that is infected and the redness and swelling that takes place when your body tries to fight the infection) which is what was pictured on the MRI. Today's MRI will be her baseline and the next MRI will be in 8-12 weeks.

What the team really looked at today was KK -- how she looked, talked, and responded to all of their checks. The doctors were very encouraged at KK's progress.

Dr. Manley, who was unable to be there today, will take another look at the scans tomorrow. We will go back next Tuesday to talk to him about next steps (which will include rounds of Temozolomide and Avastin). 

Thank you for your continued prayers!

Tuesday, July 28, 2015

Precious and Powerful


Happy birthday and healing, dear KK!

Saturday, July 18, 2015

God-Ordained Moments...part 2

In my last post about God-ordained moments, I shared how God met KK in a very personal way while she was at camp. Here is how He met me...

While KK was at HUME, I spent most of my days preparing for Backyard Clubs (BYC): finalizing crafts and games, shopping for supplies, prepping the daily bins. There was a lot to do each day. It was nice to be able to go to the office and stay as late as I needed to get the job done. It was also nice to be able to go from store to store without worrying about KK (either pushing her too far or leaving her home alone). At the end of the day, I still had some work that I planned to do from the comfort of my couch.

The evenings were not as busy...so I ended up spending way too much time in my own head.

The evenings were quiet...as there was no Kindle playing an audio book or music all night long from KK's room.

The evenings were dark...since I didn't have to leave the bathroom light on all night for KK. I dealt with a greater darkness though.

By Tuesday night, I couldn't stop thinking about the fact that a home without KK in it could be my reality by this time next year. Needless to say, I was a mess. I cried until I thought I could cry no more.

When I went to the office on Wednesday, I tried my best to hold back the tears. It wasn't long before Derek asked if I was okay and the floodgates opened. The staff surrounded me with prayer. (The love and care of this team is yet another reason why I love my job!)

On Wednesday evening, I did a little self-care then continued my BYC prep. As I read through the lessons and the corresponding Bible passages for BYC, God reminded me over and over again about His great love for me (and for KK)...

  • God’s Love is Incredible!  “You are forgiving and good, O Lord, abounding in love to all who call to you.” (Psalm 86:5)
  • God’s Love is Faithful!  “Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness” (Lamentations 3:22-23)
  • God’s Love is Invincible!  “There is no fear in love. But perfect love drives out fear.” (1 John 4:18a)
  • God’s Love is Unconditional!  “But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.” (Romans 5:8)
  • God’s Love is Real!  “You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature; rather, serve one another in love.” (Galatians 5:13)
The next day, I was still ready to cry at the drop of a hat, but I was doing a little better.

On Thursday evening, I started reading a book that I picked up at Mass Hope's Used Curriculum Sale a couple weeks beforehand. As I read, I was reminded that I need to keep my focus on God and not on the giant (known as Charlie) in front of me...

Focus on giants -- you stumble.
Focus on God -- your giants tumble.  
I'm a realist. I know that it is still a very real possibility that KK may not be here next year. However, I am choosing to trust that God's plan for both of our lives is perfect and that He will be with me no matter what tomorrow (or next year) brings.

Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills his purpose for me.

My heart is steadfast, O God, my heart is steadfast; I will sing and make music. Awake, my soul! Awake, harp and lyre! I will awaken the dawn. I will praise you, O Lord, among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; your faithfulness reaches to the skies. Be exalted, O God, above the heavens; let your glory be over all the earth.
~ Psalm 57:1-2, 7-11

Here is the song from BYC that I have been singing ALL.THE.TIME.


Did I mention that I bought the BYC materials back in March? I am so grateful that God met me in such an amazingly personal way!