Saturday, September 24, 2016

Mother's Helper

KK with Lauren and Michael
at the Southwick Zoo
A couple weeks ago, a family from church invited KK to the Southwick Zoo. She had a wonderful time with Lauren and Michael. Michael is one of her favorite "littles". She prays for him and a handful of others all the time.

After their time together, Kristin and I talked about having KK spend time with Michael so she could focus on homeschooling her older kids. We decided Wednesday mornings while I was at work and before KK's IVC treatment in the afternoon would be a good time for KK to do this.

The first Wednesday, KK woke up so happy for her first day as a mother's helper. She had so much fun playing, reading, and watching a video with Michael. By the time Kristin dropped KK off at the church, she was so exhausted that she fell asleep on the couch at church before Kristin left.

It is such a blessing for KK to do something she loves so much. I am thankful that this is also a blessing to the Delaneys and that a lot of homeschooling is able to be done during the time KK is playing with Michael.

Who knew that having brain cancer would afford KK this wonderful opportunity!?!

Monday, September 12, 2016

Well Versed in CAM

There was a lively discussion about Complementary and Alternative Medicine (CAM) in the IV room at the Rothfeld Center today. KK was right in the middle of the conversation chiming in with her thoughts. She warned others that chemo can make you feel really sick. She recommended getting colonics to get the toxins and "yuckies" out. She explained that detox baths (Epsom salt baths) can help as well. One of the ladies offered her a gluten-free cracker with raw almond butter. She said, "No, thank you," then explained that she is eating a vegan diet with no processed foods, not even gluten-free.

No 14-year-old should have to be well versed in things such as these. She has always had a good attitude about everything, but it was good to hear that she understands how important they are for her healing.

Thursday, September 8, 2016

The Heart is Deceitful

The heart is deceitful above all things, and desperately sick; 
who can understand it?
Jeremiah 17:9 (ESV)

Feelings are such fickle things...and according to this verse "desperately sick". Feelings can really mess with your mind. I, for one, do not understand why emotions can get the best of us. Feelings cannot change the truth, but it is so hard to see the truth through our feelings sometimes.

The days immediately after KK's last MRI, I felt like I was on a rollercoaster. One minute, I'm feeling good about the MRI results; the next minute, I am worried that the flare is tumor growth; then I remember that they don't know what is causing the increase in flare; then I worried about the suspected seizure activity; then... Well, you get the picture. I called my parents the night of the MRI to just get a feel for what they thought about the results. From my dad's perspective, he thought Dr. Manley was pretty positive about the results. Hearing that helped a bit. Two days later, I received an email from KK's nurse practitioner, MaryAnn, who was not at Brain Tumor Clinic. She said, "Dr. Manley told me that KK looked wonderful and things were very stable with her MRI (great news)!" Wow...very stable! Dr. Manley had stated "I'm not going to lie to you" when he talked about the increased flare, but I didn't realize he wasn't that worried about it. I needed to hear that!

Since the MRI, KK had another incident of right-sided weakness and slow speech while she was at tutoring. It didn't last long. After less than a minute, her strength returned and she was chatty. When we were at clinic yesterday, I mentioned this one incident in the last two weeks. Dr. Ullrich told me to increase KK's dosage of Keppra again. This morning, I woke up with a sense of fear that I couldn't shake: fear that the right-sided weakness is seizure activity, fear that the seizure activity is caused by tumor growth, fear that things are taking a turn for the worst. This fear meant the tears came way too easily today. I hate fear!

For God has not given us a spirit of fear, 
but of power and of love and of a sound mind.
2 Timothy 1:7 (NKJV)

The truth is that fear is not from God, so I spent a lot of time praying today. Praying for power and strength to trust that God is in control and I don't need to worry about what the future holds. Praying that I will love well -- or as a necklace KK has says, "Love like you've never been hurt" -- when I just want to curl up in bed and shut myself away from the rest of the world. Praying for a sound mind to not let my feelings rule, but to rely on the truth of what we know about the tumor right now: it is "very stable".

Then I re-read the MRI study (see below). I see so many positive things and realize once again that the increased flare could be tumor growth, it could be post-treatment changes, but it could also be vitamin C doing it's job -- causing cancer cells to swell. We, of course, are praying for the latter and praying that the "seizure activity" is caused by those cancer cells popping.

Brain MRI with and without contrast.

INDICATION: "13 year old female with a history of High Grade Glioma (2015). Interval MRI reduction resid tumor. MRI 1/20/16 - disease progression. Began modified 5-drug (Cytoxan/Celebrex/ Fenofibrate/Thalidomide) 1/29/16. Subsequent MRI with fluctuating changes."

TECHNIQUE: Multiplanar T1 pre-and postgadolinium, T2, FLAIR, DTI images were performed of the brain. Approximately 4.9 cc of Gadavist was administered intravenously.

FINDINGS: Limited, direct comparison is made with brain MRI dated 6/8/2016.

There is a left temporal catheter present which traverses the left temporal lobe and terminates at the level of the left cerebral peduncle.

The lateral, third and fourth ventricles are minimally enlarged and stable in size most likely on an ex vacuo basis.

There is a fluid-filled surgical cavity within the left occipital lobe. This is lined by confluent T2 signal prolongation involving the left occipital, left temporal lobe white matter and posterior aspect of the left thalamus, splenium of the corpus callosum and right periatrial white matter which is increased in extent representing either post-treatment change or increased extent of tumor.

Additionally, scattered foci of T2 signal shortening are seen within this region consistent with petechial hemorrhage.

Stable heterogeneous enhancing soft tissue/tumor is seen along the left lateral aspect of the splenium is slightly decreased in size as are approximately 18 mm in greatest cross-section when compared to 6/8/16 and further decreased in size when compared to 4/20/16.

The heterogeneous enhancement within the left parietal white matter, left occipital white matter and splenium of the corpus callosum is stable representing a combination of tumor and post-treatment change.

No subdural fluid collection or midline shift is present. The major intracranial arterial flow voids are normal in appearance.

Generalized dural enhancement is noted.

There is minor mucosal thickening within the paranasal sinuses. The mastoid air cells are clear. The adenoids are not enlarged.

IMPRESSION: Extensive post-treatment changes. Heterogeneous appearing tumor observed centered within the splenium slightly decreased in volume when compared to 6/8/16 and more significantly decreased when compared to 3/2/16. Confluent and heterogeneous signal abnormality seen within the left parietal, left occipital, left temporal lobe white matter is increased and suggestive of post-treatment change. Attention to this on follow-up imaging is recommended. Shunted patient. Stable ventricular configuration. No leptomeningeal dissemination of disease.