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.

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

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!

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.

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!

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!

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. 

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!

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.

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!!!

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.

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.