Today is a big day! Tristan is in the OR right now for his penultimate spinal tap and intra-spinal chemo. After this, only one left, in July. As always, my five-year old was cheerful this morning, even after being dragged out of bed for a chilly stroller-ride from Family House to the hospital, deprived of breakfast, and denied the opportunity to play on a UCSF iPad when the internet in the OR frizzled out.
As we made our way from point to point in the hospital – coffee for Mommy, check-in at the security desk, another check-in at the OR desk – people in the lines and behind the counters kept commenting on how big Tristan is, and how smart, and what a great kid. He is, and I’m so proud of him. Does he recognize the enormity of what he’s been through? Dunno. He’s very matter of fact about it. Without a hint of stress or complaint, he’ll say:
“I’m going to UCSF today with my mom for chemo.” Or,
“I had leukemia.” Or,
“They had to poke me in the arm three times yesterday.”
We’re back in our room at Family House now. Tristan woke very quickly in OR Recovery, demanded the chocolate chip cookie we had packed away for post-procedure, and then was ready to blow that popsicle stand. I was a bit worried about the quick wake-up because, at our last OR visit, Tristan awoke too soon and had what’s called emergence delirium – he was kind of bonkers. I was extremely alarmed and thought for a while that he had brain damage. Then he fell back asleep and woke up just fine. This time around, no signs of delirium, thank goodness. Our appointment at the infusion clinic for IV chemo is not for a few hours, we we’ll rest here at Family House until then. Tristan is playing games on my phone while I type on my laptop. I’m consumed by the wonderful thought that we only have one more OR visit lift. Just one more. And just the other day I booked Tristan’s last appointments for chemo at the clinic. The very last one will be September 6th. It felt like a big deal to schedule that last appointment.
I spend a lot of time thinking about what I am going to do with my life when Tristan is done with treatment. I’m not stressed about it – it’s a good feeling to contemplate life post-pediatric cancer. I’m older and uglier, but I’m stronger and smarter. I think that something good is going to happen. This stuff I’ve been doing since Tristan’s diagnosis – taking classes, teaching classes, karate, running, writing this mess of words – it’s all leading somewhere, I think. I’m not envisioning myself as a blackbelt-wearing professor of blog-writing. This is all going somewhere, I’m just not sure where yet.
We’ve had lots of good, “normal” stuff happen since I last wrote in January, and we’ve had some bumps, as well.
The good stuff includes the Spring start of baseball…and softball…and t-ball. It’s a triple header. Three kids, three different sets of practices. Once Gary and I finally did the math (three children with practices at three different locations ≠ two parents with two cars and two jobs), we hired the kids’ grown-up cousin Olivia to equalize that equation. So, a few afternoons a week, the kids are whacking balls and running around the diamond. All three seem to be enjoying it. At Tristan’s first t-ball game he appeared to be playing shortstop…and every other field position. He got a lot of action.
When they don’t have ball in the afternoons, Tristan and Phoebe have karate. Last week Tristan tested for his Orange Belt. For each belt, the kids must learn a pledge. When Tristan was asked to give his, he did it like a professional orator. “I promise to never use my skill just to hurt or make someone afraid…” he said loudly and clearly. Phoebe will soon test for her Blue Belt. Last month, I received my Blue Belt and celebrated afterward over a margarita at a Mexican restaurant with my karate friends, a motley crew including a huge, shaven-headed casino bouncer, a butcher, a college student, and the grizzly bear-sized and -shaped master. Always a good time.
Phoebe has a new puppy, a white Australian cattle dog with black freckles. Skade, named for the Norse goddess of winter, snow, and mountains, is small and shy, the runt of her litter. She is very smart, cocking her head to the side and listening intently and intensely to every word I say when I face her, look at her eyes, and talk. I’m hoping to spend lots of time working with her this summer – I think she could be a fantastic dog. Phoebe and I still miss Pablo intensely. Sadly for Phoebe, Skadie is not a snuggly lap dog, though her breed is surely better suited to our remote mountaintop than was Pablo’s.
Tomas joined Gary in late February for a two-week trip to Indonesia. It was a special trip, long overdue. (The two of them had planned a trip to Indonesia together for late July 2015; the trip was scratched after Tristan’s diagnosis.) On this long awaited trip, Tomas had a fabulous time, reconnecting with old friends, eating nasi goreng, visiting Bogor, surfing in Bali, and doing a bit of cultural tourism. Of special note, he spent time with Mimin and Tini, our terrific helpers while we lived in Bogor who were both very important parts of Tomas’ early years, and critically-important parenting instructors to Gary and me. (I’ll never forget Mimin saying to me, “Ibu, I really don’t think he needs another nap right now. He’s already had five today.”) Tomas also spent time with India, who now lives on Bali with her parents; India was one of Tomas’ cribmates at Mekar Lestari, the orphanage where he spent his first ten months, and she was adopted by Australian friends of ours who lived just down the street from us in Bogor. Tomas and India spent years playing (and fighting) daily. In addition, Tomas spent time with Rik and Rafa, two boys from Mekar Lestari who were adopted by a Dutch couple with whom we became friends via the informal adoption network. Tomas seems to really enjoy seeing these kids and to feel a connection to them. I hope that, although they see each other infrequently, as they grow up, these four can reach out and find each other if they need to.
This semester I’m doing a combination of teaching and taking a class on both of our local campuses. At Humboldt State, I have a very small, easy, and fun position teaching one Mammalogy laboratory a week. What a pleasure, compared to last Fall’s introductory zoology lectures to 97 students! At College of the Redwoods, our local Junior College, I’m taking Microbiology. I find it fascinating, and I whack myself over the head regularly that I steadfastly avoided classes with a molecular and cellular focus when I was in college, proudly sticking to the organismal stuff. Why on earth did I do that? This teeny tiny stuff is so incredible! I absolutely love it. Also, I very much enjoy the bouncing back and forth between the two campuses and interacting with students and faculty in the two capacities, as teacher and student.
And now for the bumps.
I’m sad to write that Mia, the kids’ distant cousin who was born with a bad heart, passed away in February. After a month on life support, and liver malfunctions that caused blood clotting and circulation problems, and a brain MRI that brought only the worst news, they let her go. Tristan and I saw her one more time in the hospital in late January, when she and her parents were still fighting for her to live. It wasn’t easy to see. I held her mom’s hands and told her again what a warrior she is, and that she’s just going to keep hammering metal patches onto her heart so she can go on. She got it. When I saw her at the memorial in February, Cierra had a new tattoo on the front of her shoulder – an EKG line blipping up and down. A new badge of honor for that warrior mom.
In March, after many complaints of mild pain in his legs and a couple of episodes of extreme pain, UCSF ordered up an MRI on Tristan’s legs. We went down to San Francisco a day early, taking Phoebe along with us, and had the MRI one day and chemo the next. Tristan was a pro in the MRI. With a “big” Lego hanging in the balance, he was willing to hold still for as long as it took. Unfortunately, the MRI showed a small area of avascular necrosis (bone death, in English) in each of Tristan’s tibias. Part of Tristan’s treatment protocol involves monthly pulses of high-dose steroids, and steroids can cause problems with the blood supply to bones. UCSF hadn’t expected it – it’s more common in older kids on steroids, and it’s more common in girls. They are adamant that what they see in Tristan is TINY, a degree sometimes seen in regular folks not on steroids, and that he will recover fully from it. The upside is that he’s off of steroids for good. He’s so close to the end of treatment that they won’t put him back on. We’re done.
The week before Easter I caught a cold, which I then passed along to Tristan. His cough led to high fevers that put us in the St Joe’s ER in Eureka three nights in a row, Tuesday, Wednesday, Thursday, which was a fairly miserable experience. On the first day, my UCSF triage card, which should give Tristan immediate access to a safe space in the ER, got us about as much attention as my library card would have, and we spent almost two hours in a jam-packed waiting room. Fortunately, Tristan didn’t fuss about wearing a mask. He was so feverish he didn’t even notice. The hospital was so full that it was shipping patients to other hospitals as far as six hours away. Some refused to go, and were squatting in the ER until inpatient beds opened up. Miserable. On each visit, we had Tristan’s blood counts done and blood cultures started. On the first, chest x-rays. His neutrophil counts fell from day to day. On the third night, we were placed in an ER room that had a private bathroom attached. The toilet was clogged with a towel. That was it. On Friday, after hearing these stories, UCSF told us it was time to come down. I packed, drove us down, and checked us in. We spent Easter weekend in the Children’s Hospital. Tristan alternated between spiking fevers and watching movies. I alternated between studying for a Microbiology exam and snuggling Tristan. He was given doses of IV antibiotics, chest x-rayed again, and watched like a hawk for secondary infections. When he was given terrible, awful, painful double injections in both arms at 3am, after the IV slipped out and antibiotics were ordered, Tristan yelled as the tears streamed down his face, “Curse you! Curse you!” at the nurses. I’ve got to hand it to him, the kid’s got a good grip on language. On Easter morning, the doctors pronounced us good to go and sent us home. The fevers disappeared, the cough dried up, the blood counts bounced back up, and the little man is okay. Apropos of my Microbiology class, I emerged from these ER and hospital visits with a mysterious cellulitis infection in my leg, which fortunately resolved after a course of doxycycline. I have a new and rapidly growing appreciation for bacteria.
It’s time now for Tristan and me to walk back up to the hospital for his chemo infusion.
Now we’re at the infusion clinic. The doctor just signed off on Tristan’s chemo, and while he gets his medicine, eating a cheeseburger with one hand and playing on an iPad with the other, I have one more event to relate. Early this year, I got an email from the Make A Wish Foundation, asking if Tristan and I would be willing to speak at a MAW fundraiser in Eureka in early March. Tomas and Gary were in Indonesia at the time, so Phoebe, Tristan, and I attended the event. I was mildly appalled that there were about 300 people in attendance (recall that I am terrified of public speaking and was only partially able to squelch my anxiety by doing a total immersion lectureship last semester), but I pretended I wasn’t me, walked up to the podium when I was summoned, adjusted the microphone like I knew what the f*%# I was doing, and gave a four-minute speech. I talked about how, while Tristan and I have been on this crazy adventure, we have had overwhelmingly positive encounters and experiences with warriors and caregivers and people who simply make us feel good, and how the Make A Wish people and our MAW trip simply made us all feel good. After I finished my talk, the Country Supervisor, who was MC-ing the event, pulled a chair up to the mike. I lifted Tristan onto the chair, and he gave a rousing two-minute talk, complete with hand gestures and emphasis, about his wonderful trip to Hawaii. He was followed on the chair by Phoebe, who was pure sweetness as she related her encounter with dolphins and a noteworthy peanutbutter-and-jelly sandwich at a nice café. As we left the podium, the huge audience gave the kids wildly enthusiastic applause. By all accounts, the fundraiser was a success; the money raised will be used to send other local Make A Wish families on their wish trips.
Tristan’s chemo is finished, and the nurse is removing his IV. We’ll head back to Family House to rest for a few hours and to build a wooden scorpion puzzle prize from the clinic. Then we’ll taxi to the airport for our late-night flight home, which will get us there a few hours before I get up to head to my Microbiology class.
And some more photos…
One thought on “Penultimate anesthesia & Spring news”
Toni, what a fantastic blog and read. You really must find time in your busy schedule to write a book and give other families with difficult medical problems your positive vibes. Andree