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


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


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


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 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!