Anniversary of First Chemotherapy

 

One Year Later

If someone had observed me on the playground on Thursday, one wouldn't have noticed anything particularly different. However, my heart was bursting out of my chest because I knew that one year ago that day, I was packing our suitcases to take Thomas for three days inpatient at the hospital for his first round of chemotherapy. What followed was a year of complications nobody could have foreseen . . . and I thank God nobody was able to forewarn us because I would have quailed in the face of six rounds of ineffectual chemo, 13 surgeries (11 in one month), 93 units of blood transfused in one month, and the necrosis and loss of his stomach, spleen, gallbladder, and hepatic and pancreatic ducts. Thursday, I took Thomas to a playground for the first time in a whole year. After Thomas laid in a hospital bed for four and a half months, he has learned to crawl, walk, and climb . . . even if he will be in Physical Therapy for a long time yet! I was able to watch him navigate the playground while a maelstrom of Big Emotions swirled in my heart. Thomas dressed as Superman to go to that playground, and I think that was very fitting! 

Wanting to look stern like Superman

Reducing Medications

This week, Thomas had his next GI appointment, at which the doctor and dietician spent seventy minutes with us: we were very grateful.

Thomas dressed as a surgeon going to his GI appointment

Thomas is reducing more medications! The big, emotional milestone this week was Thomas receiving his last dose of Clonidine.

Last dose of Clonidine

During his months in PICU, Thomas was receiving many simultaneous drugs for pain and sedation:

• morphine, 
• ketamine, 
• precedex, 
• ativan, 
• methadone
• versed, and 
• thorazine . . .
• along with numerous other medications for other purposes.

Just reading that list stuns me even now. Thomas had to be weaned off every single medication one at a time and in a very slow and supervised manner. The benzodiazepine class drugs were weaned down to clonidine, and Thomas has been actively weaning off of clonidine for three months. That is how long it took him to do it safely. What a joy to give that last dose!

This week Thomas also is "trialing off of" his Bactrim/Septra antibiotic. He has been taking a high dose of this as prophylaxis against liver infection. His reconstruction has his liver in a place other than where God designed, so when Thomas retches, the fluid from his GI tract (with all its bacteria) flows up and back, potentially into the bile ducts to his liver. This can lead to cholangitis (liver infection). Staying on a powerful, very effective antibiotic like Bactrim/Septra is terrible for one's gut biome and also risks or nearly guarantees eventually becoming resistant to the antibiotic. After Surgery, GI, and Infectious Diseases all weighed pros and cons, the team decided he could stop taking Bactrim/Septra. Our parental job is now to watch vigilantly for a liver infection brewing (upper right quadrant abdominal pain, fever, jaundice), which would necessitate a trip to the hospital.

Thomas is in his final four weeks tapering off of gabapentin and hydrocortisone. He should come off penicillin in six more months. He might be on cyproheptadine (appetite stimulant) and enalapril (anti-hypertensive) indefinitely. He also currently takes a powdered multivitamin, vitamin D, Benefiber, and is newly going to resume trying Creon (pancreatic enzymes) and newly try DuoCal (calorie supplement).

New Pets

Normally the house rule is that you have to be ten years old to own a pet, but we told Thomas he could have a pet and what he wanted was a fish to add to his brother's tank. Today we took him and bought a yellow fish and a blue fish, which is what I will call them, although John could tell you their Latin names and from what African lake they come.

Having learned this week that the seahorse does not possess a stomach, and therefore spends all day eating, we also visited the sea horses at the fish store. We have discovered that many patients with total gastrectomies consider seahorses their mascot!

Miscellaneous Moments

A whimsical butterfly I made out of breakfast sausages

John is such a sweet brother!

John is such a sweet brother!

Brothers playing bubbles

Mama and David out to lunch

Mama and Thomas out to lunch