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!

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.

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.

Happy Birthday Jesus!

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

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

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.

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!

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!

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!

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".

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.

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.

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!

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!

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.

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.