9-Month Cancer Scans: CLEAN!

We have no choice but to start with the big news first, rather than go in the week's chronological order: Thomas's 9-month cancer scans continue to show No Evidence of Disease! We thank God for his mercy. 

However, every three months when we have received this good news, and certain sweet folks have said, "God is good!," I feel uncomfortable. God's goodness does not change based on Thomas's little life. God is always good . . . including if we ever receive devastating news. That truth is so deep, I get lost in it and can't find my way out.

Homeschooling

This felt like a tough week of homeschooling. It's just so much to juggle: five grades and six kiddos is a lot. I don't know why, but I somewhat regularly have people express admiration for me managing it all. I don't know who needs to hear this today, but this is super hard, I feel frustrated most days and mostly all day long, my laundry builds up, the clutter on the ground builds up, and I cry. I'm nobody special, believe me.

The new aspect of juggling this year is that Thomas needs me very often. Whether it is a bathroom need or a hunger need, I have to stop whatever I am doing immediately. Thomas is not gaining any weight, so him eating food is the top priority: when he feels hungry, he has to be allowed to eat. The end result is a very scattered mama who sometimes spends no more than five minutes with each kid before getting pulled away.

David (preschool)

We did try schooling outdoors in the exquisite turning-fall weather, and it had more merits than downsides, so we plan to try it again this coming week.

Weak Veins

On Wednesday, I took Thomas to the adult hospital for his injection of radioactive MIBG. (The children's hospital does not work with MIBG.) Neuroblastoma is a cancer that "likes" MIBG, so the MIBG soaks into any spots of neuroblastoma and thus shows up on the scans. Thomas's veins are becoming much harder to stick, which makes me think this is not so much a result of chemotherapy but from how many blood draws he has to endure. Our appointment which should have lasted one hour lasted two and a half hours because of how many times they had to stick him and could not place the IV, including once blowing a vein. Thankfully, they called in the IV team, and delightful Miss Erika (who remembered Thomas even before she saw him!) arrived, placing the IV on her first try such that Thomas didn't even feel it. In future, I'll be calling the IV team right up front, which a parent has the option to do.

Cancer Scans

On Thursday, we parents had to juggle to get Thomas to his early morning scans. This was an in-person RCA day, so we had older kids to worry about. Chris dropped off Thomas and me at the hospital at 7:00 a.m.: yes, I could have driven us, but it adds time to me parking, and Chris likes to drive us home and have me sit in back next to Thomas in case he throws up from general anesthesia. So . . . Chris was a gentleman and insisted on driving us in, then he drove home to get all the kids ready for school and drop them off. A dear neighbor babysat our four-year-old at home. Then Chris went to Mass to pray for Thomas's health before meeting me at the hospital before Thomas even woke up.

The Nuke Med team was very kind and, after the prior day's debacle, immediately agreed to giving Thomas laughing gas first so he would be asleep before an IV was placed.

As I've discovered on a couple of other occasions, the hearing of hospital beds being pushed down the halls is my special PTSD trigger. While I did not have an outright panic attack this time, the sound caused extreme emotional discomfort and a feeling of my wishing to flee. For Thomas's ten emergency surgeries within one month, he was always whisked off in his hospital bed and we would be left behind, listening to the wheels on the hard floor, wondering if we would see Thomas alive again.

I really, really do not like that sound.

We brought our sweet boy home for an increasingly tense afternoon. At scans three months ago, we were called with the clean results on our drive home: it was that fast! On this day, we waited . . . and waited . . . then sent a couple of emails . . . then made a phone call that went to voicemail. I, for one, felt blackness suffocatingly closing in by dinner time. We received an email from the oncologist at 10:00 p.m., thank goodness.

Thomas will go into the Oncology Clinic for a couple of hours on Monday for his quarterly follow-up . . . and more blood draws! His doctors are very good now about putting in "future orders" for blood labs, so that day we will do "one poke," but get blood labs for three different doctors. And then Thomas goes a very relaxing two and a half weeks without any medical appointments until his endoscopy under general anesthesia.

Ice Skating Classes

On Saturday, I had the privilege of witnessing a small-m miracle through my tears: Five months after being discharged from his 132 days in the hospital which made him lose all his ability to walk or move on his own, 14 months after his initial cancer diagnosis, Thomas took his first ice skating class this morning. He could have come off the ice at any time, but he lasted the entire 30 minutes, only coming off once because he was so HAPPY that he wanted to give me a hug and kiss before skating back. 

Our sweet boy was very tired after his class!

Joseph also began classes at a higher level.

Upcoming this week . . . dinner with another family, girls' choir starting up, altar serving, Fraternus, Fidelis, hockey, various music lessons, meals are planned for the week and groceries shopped . . . now to tackle picking up clutter and catching up on laundry!