It Was a Different Kind of Sunday

“It’s basically excruciating…”

He was referring to the pain in his feet, nerve pain, one of the unpleasant side-effects of the “low-dose” chemotherapy drug Vincristine.

And this was supposed to be the easy stuff.

Ian received 6 doses of Vincristine, one each week while he was undergoing Proton Therapy. It was the chemo part of his chemoradiotherapy*, part of the double-whammy-go-at-it-with-everything-you’ve-got way that Medulloblastoma is treated.

Nausea wasn’t an issue for him, at least, not once the steroid kicked in, helping with the scary brain swelling issue he had going.

The hair falling out wasn’t really a big deal. I mean, sure, I got all emotional about it after focusing so much on all of the issues from the Posterior Fossa Syndrome**, and it just seemed so overwhelmingly cancer-ish… But Ian didn’t seem to mind. He’s always liked the buzzed look and has been pretty much waiting until adulthood and Army boot camp to finally shave his head.

The tingly fingers was mild at first, and only on his fingertips. We were told that tingling, numbness, and pain in the hands and feet were side-effects from Vincristine. I think the word common was used. It was said very casually. We were told to mention it, if it happened, which we did. We were told to say something if it got worse, so we mentioned it again when it spread further up his fingers and into his toes.

This drug may cause damage to certain nerves in the body, which can lead to a condition called peripheral neuropathy. This can cause numbness, weakness, pain, or feelings of burning or tingling, often in the hands or feet. These are sometimes related to being exposed to hot or cold temperatures. These symptoms can sometimes progress to include trouble walking or holding things in your hands. Let your doctor know right away if you notice any of these symptoms. If they are severe enough, this drug may need to be stopped or the dose reduced until they get better. – www.cancer.org

We weren’t really told what it was or why it happened, just that it came with the territory.

Neurologic – Frequently, there is a sequence to the development of neuromuscular side effects. Initially, only sensory impairment and paresthesia may be encountered. With continued treatment, neuritic pain and, later, motor difficulties may occur. There have been no reports of any agent that can reverse the neuromuscular manifestations that may accompany therapy with Vincristine sulfate. - www.drugs.com

It’s been a month since Ian’s last does of Vincristine, and the bit of tingling/numbness has not diminished. It has spread, further up his fingers and throughout his whole feet. It has progressed beyond tingling to pain, serious pain. Excruciating was his word yesterday morning.

Excruciating was the reason we stayed home from church yesterday.

We’re thinking that the steroid he was taking may have been masking some symptoms, as after we finished tapering him off of that drug, his symptoms all became more pronounced. His last dose of the steroid was last Sunday morning, and it was a long week of headaches, exhaustion, fevers (complete with 2 hospital runs for IV antibiotics, chest x-rays, and full lab work-ups), weakness, and progressing and increasing pain. His fine motor skills have gone downhill. His speech has gotten “thicker”. His pain has become constant.

His dad and I have become obsessive researchers, more so than ever before.

Ian was due to be admitted to the Children’s Hospital in Minneapolis last Wednesday, for the start of the first of nine rounds of Maintenance Chemotherapy, but the 2nd fever of the week on Tuesday caused us to move that back to Friday. He was due to get more Vincristine, multiple doses, along with other, more powerful, more toxic, more dangerous chemotherapy drugs.

We continued to research .

Thursday came, and as Ian’s apparent toxicity side-effects increased, so did our uneasiness about heading back in for more…

We talked, and we agreed, and I called the clinic to let them know that we wouldn’t be bringing Ian in to start his Maintenance Chemo the next morning. I asked if we could have a conference with his oncologist instead.

We’re meeting with his oncologist today.

We’ve been building a list of questions and concerns. We’ve been learning a lot about not only cancer, but the cancer industry. We’ve been researching natural and alternative treatments. We’re nervous, a bit scared, and a whole lot determined to help our son.

We could use your prayers- for wisdom, guidance, & direction, for strength & healing for Ian’s body, and an extra measure of His grace for each of us as we walk through this valley together.

Thank you, no really, thank you…

 

*Treatment that combines chemotherapy with radiation therapy. Also called chemoradiation. -National Cancer Institute
**If you haven’t read much of our story, Ian’s story, please do read that link…

Related posts:

1. I’ll Never Get Used To It
2. He Is Faithful
3. All Is Quiet On My Western Front
4. Some Things to Be Thankful For
5. Friday Night Update

Tagged as: cancer, chemotherapy, side-effects, Vincristine