Updates (March 25 – 31)

Sunday (3/25) – We enjoyed a normal Sunday morning- Bible teaching, Bible preaching, sweet worship, & sweet fellowship with our church family. We learned that the mother of one of Ian’s friends, who had brain tumor surgery a couple months after Ian (crazy odds considering our small congregation), was fading fast. Praying for her family…

Monday (3/26) – A “typical” Monday for us, Speech Therapy, Occupational Therapy, & Physical Therapy. Ian started the week off at a lower energy level this week. He seems to still have a touch of the viral cold we’ve been passing around for a few weeks, or it could be some allergies kicking in early, or it could be both… He’s been eating better/more, so I was hoping to see his energy level pick up a bit, still hoping…

Tuesday (3/27) – A weekday with no appointments, these are rare around here.

When Ian came upstairs this morning and I asked him how he was feeling today, he told me he was feeling less steady than yesterday, weaker & more shaky. I know that things can really ebb & flow when it comes to going through cancer treatments and rehabilitating from a brain injury at the same time, but it’s hard not to worry anytime he seems to take a step backwards, no matter how small. He said a few things that were off (didn’t quite make sense, or things that were just plain incorrect), which happens from time to time, but he hasn’t been complaining of any headaches, so we’re just watching him (like always) and making mental notes (like always), thinking it’s probably from the extra fatigue. We have an appointment with his oncologist tomorrow morning, so if his moments of confusion continue or worsen, we will be sure to bring it up in clinic.

We had a roller-skating/roller-blading field trip on the calendar, that I know Jaron, Liberty, Garce, Hope, & Mercy (& probaby Joseph!) would’ve had a blast at, and I was hoping Ian would’ve enjoyed hanging out with a bunch of his friends from our homeschool co-op even though he obviously can’t roller blade, but when it came down to it, everyone (myself included) was just too far behind in their studies and chores, and I made the unpopular decision to stay home this afternoon to at least make an attempt at catching up…

Wednesday (3/28) – Today started out early and went long. We had an appoitnment with Ian’s oncologist, down at Children’s in Minneapolis, at 9 am, which, considering traffic, meant leaving the house shortly after 7. (That’s pretty early for us to be all up, much less out the door!) That appointment lasted about 2 hrs while we discussed the various supplements we’ve added to Ian’s regimen, the chromosomal breakage study test results and what they might mean for Ian, continuing chemotherapy treatment one baby step at a time and stopping to re-evaluate after each and every step.

After meeting with the oncologist, we met with a geneticist to discuss some very new cutting edge testing, XomeDX testing, which is being run on both Ian and his cousin, my sister’s son, Tenney. They’ve both been tested for a couple of the basic things that they know can predispose a person to cancer, but neither of them had anything show up. It may turn out to be one giant and crazy coincidence, but 2 first cousins with cancer, in a family with a strong history of breast cancers, just seems like too much cancer to be a coincidence. So, they’re digging deeper, thanks to some amazing new technology. It could take a few months for results to come back, so in the meantime, our boys will be marching along, one step at a time, with their respective treatments, hoping and praying to kick their cancer to the curb!

After meeting with the geneticist, signing more waivers, giving up some more blood, and grabbing a quick lunch, we were off to Speech, OT, & PT. Ian was really dragging by the end of PT, and he fell asleep in the van on the way to see our chiropractic neurologist, who usually works with him for quite a while, but only walked a short way with him and spent a couple minutes doing some proprioception exercises before saying “that’s it for you today”.

Also, we got the news that Ian’s friend’s mother, who we were praying for on Sunday, passed away today. It was a different type of brain tumor, and her surgery was less successful, so we knew she faced a tougher battle, but it is still hard to see someone lose their battle with cancer while you or a loved one are/is still going through the battle (or in Ian’s case, you AND a loved one!)

Thursday (3/29) – Another day with no appointments, and nothing else on the calendar- we didn’t even run a single errand. The only time anyone left the house today was when the middle kids were outside building a new fort

Ian is still feeling fatigued. Each day he says he feels a bit more fatigued than the day before. Overall, he seemed better today, probably because he took it nice & easy with his exercises and didn’t have any therapists driving him…

His appetite seemed ok today, and we filled him up with as much nutritious food as he could eat. Freshly-milled whole wheat buttermilk biscuits with butter & local raw honey, tons of fresh organic carrots and sugar snap peas, homemade chicken enchiladas with cilantro & lime seasoned brown rice and organic sweet white corn with salsa, fruit smoothies with the most delicious honey-flavored greek yogurt I’ve ever tasted… Good stuff, I tell ya. We’ve always tried to eat healthy, but ever since Ian’s diagnosis, we’ve taken good nutrition much more seriously. Good nutrition isn’t just a good idea anymore, it’s a neccesity- as a friend of mine (breast cancer survivor) said, “I had to start eating as though my life depended on it, because it did!”

Friday (3/30) – Baby sister Faith’s 1st Birthday!

I forgot to mention that on Wednesday, we did come up with a plan for another round of chemo for Ian. He will be admitted on Monday morning to try a cycle with Cisplatin, the main drug we were hoping to avoid, due to its potential for neuro side effects, not to mention kidney & hearing damage. Unfortunately, Cisplatin is the gold-medal-standard drug for treating Medulloblastoma and his treatment protocol calls for 6 of 9 rounds to feature Cisplatin along with CCNU & Vincristine, so his treatment would seem really incomplete without it. We are hoping (& praying!) that the nutritional supplements Ian has going in his system now will help protect against some of Cisplatin’s possible side-effects. Also, he will only be receiving the one agent (no CCNU or Vincristine), so hopefully we won’t see too much rise in his level of chromosome breakage and if he does experience any toxicity side-effects, we will know for sure what drug caused it.

We have an early morning again today, as Ian has a 9 am hearing test down at Children’s. They monitor the high-frequency hearing range pretty closely, as that is where they first see the effect/damage, and they will adjust/reduce the dosing, or cut it out altogether, depending on the level of change/damage. I’ve heard many stories of hearing aids after radiation & then Cisplatin…

After the hearing testing, we will have our typical Friday afternoon with Speech, OT, & PT appointments. I’m hoping Ian’s energy level will be high enough to get through it all and see some progress.

Saturday (3/31) –