The week’s review: Family House & today’s clinic visit, August 11th
It’s been a whole week again, and again I’m dying to send you news. It was a really big week…
Chris and Agi had committed a long time ago to rent out their apartment from August 5th to the 10th. They left town last Wednesday for a visit to Eureka and Portland, and Tristan and I moved to Family House. Family House is an AMAZING place, providing free housing to pediatric patients (mostly, but not limited to, oncology and hematology and bone marrow transplant ones) and their families who live far from the hospital. Turns out lots of parents were sleeping in their cars while their kids were receiving treatment at UCSF. Family House has provided an incredible solution to that problem.
I was blown away by the place. It was shabby, but spotlessly clean. So many of the patients are immune-compromised for one reason or another. As such, there are rigorous standards for housekeeping in the communal kitchen and two or three communal bathrooms on each floor. Residents are asked not to go from one floor to another to limit germ transfer. Costs are cut by asking each family to wash, dry, and fold their own sheets and towels when they check out. Attached to each communal kitchen is a playroom/TV room. Family House is nominally short-term housing, but, as I learned, many of the residents live there for years at a time. The staff stand by to provide sweatshirts, free zoo passes, fans, sunscreen, and anything else a family suddenly cast in the the scene might be in need of. I was really touched by the whole place. It is SO important. The costs of long-term treatment for things like cancer are so crippling for so many people, and the most incredible volunteers and donations and fundraisers have come together to make Family House a major solution to the problem. I was so glad to be able to make use of it, and if I ever have a gazillion bucks to donate somewhere, I’ll put lots of it to Family House.
Gary and the big kids visited while we were at Family House, and we made use of the its zoo pass and also made a trip to Berkeley to walk around a bit on my old campus. Tristan enjoyed his first taste of Blondie’s Pizza, a Berkeley institution.
As wonderful a service as Family House is, it was really, really hard to be there. Tristan and I have more or less been in isolation until going there, first in the hospital, then at Chris and Agi’s quiet apartment. Then, suddenly, we were amidst other families suffering their own ailments and fighting their own battles, many of them much scarier than ours. Our kitchen-mates were as follows: a single mom with curly-haired baby Aria in hand and seven year-old Zurylisa who has an inoperable brain tumor entwined in her spine and six months to live (they are trying radiation); a Navajo couple with two year-old baby Joy who has SCID, better known to most of us who were kids in the 70’s as the “bubble boy disease” (the doctors are building for her, donor cell by donor cell, an immune system, and they’ve been living at Family House for a year and a half); and a couple from LA whose 18 month-old is embarking on radiation treatment this week to follow up on removal of a tumor from his abdomen. The father told me in the elevator on their way out to the hospital, “We’ll be in the hospital all week because Noah will be radioactive all week.” Fucking hell. Radioactive all week. I almost fell apart. The dad and I shook hands. “See you on the outside,” we said.
These folks were all so positive. They were experienced warriors. Zurylisa’s mother told me the girl had almost died from a respiratory infection when she was six weeks old. Her mother was out to beat the brain tumor, too. Zurylisa told me, “I’m a soldier.”
By the end of five days in Family House, I felt ready to crawl back into my hole. Guess I’m not big enough to take it. It was really hard. I wish I could change things for all of them.
After that review of our stay at Family House, it’s a bit hard to make a transition to a more positive thing, but here goes:
Yesterday we moved back to Agi and Chris’, and today we had our weekly clinic visit. It went on for ages — we were there over four hours — but if was such a good afternoon. We saw social workers and nurses who feel, by now, like old friends, Tristan got his chemo push of Vinchristine, his picc line dressing was changed, and he had labs drawn and bloodwork done. Some of his bloodwork results came in before we left, others were called in to me by three (three!!) different doctors and nurses later. (I SO appreciate their care and commitment, and would much rather they ALL call me than none call me!!). Tristan’s platelets are well into normal, healthy range at 320,000, his hemogloblin as good at 9.9, his good white blood cells have quadrupled in a week to 4.0, and…drumroll…his neutropils are are 2,460 — totally normal!! I was told the next 8-10 days will be good ones for him: his counts will be good and he’s in a pretty safe place numbers-wise. And…we were given a surprise pass to go home tomorrow for a few days!! Yay! Tristan is SO excited.
We’ll leave here tomorrow morning and be home for a few nights. This is so fabulous!
I’ll leave you with a Tristan quote of the day: “Mom, I’m kicking my sickness up my butt.” Needless to say, he means his kicking his leukemia in the ass. Go Tristan!
Periwinkle rocks, steroids suck, August 18th
Last night might have been the worst in my history of parenting. And I’ve had some bad ones. Right now we’re in the Surgery waiting room, awaiting Tristan’s end-of-Induction bone marrow biopsy and lumbar puncture. He was ordered not to eat or drink after midnight last night. Hard enough on a normal day, but this is a child who had been on high doses of steroids for 28 days. He has a raging hunger and a crawling-through-the-desert-in-search-of-an-oasis thirst. I have spent most of the last few days feeding him. He eats enough for a fireman, or many two firemen. Sometimes it seems like he’s eating enough to feed a whole fire station. He has swollen to the size and shape of a prize Halloween pumpkin. Temporarily, the doctors and nurses assure me. So, last night was almost entirely sleepless. The steroids had him so agitated, and I couldn’t settle him by feeding him or giving him something to drink. Eventually we got up and watched movies in the middle of the night. It was horrible. Lindsey Green, mother of twins, and other mammas out there, I know you hear me, Sisters.
On the upside, when I realized yesterday evening just how bad things had gotten and that the cumulative effect of the steroids had completely turned Tristan into a crazy, ravenous, raging, monster, I finally called the 24-hour pediatric oncology service to ask when Tristan’s regimen might no longer include steroids. His pill bottle said August 17 AM was the last dose of the cycle, but no one had told me to stop giving them to him, and there were more in the bottle. A wonderful doctor on the service gave me the best news I’ve had in a while: never again will Tristan have to take steroids for a whole month straight! Phew. There will be bursts, for a few days at a time, over the next few months, but Induction is the worst part as pertains to steroid effects.
So…now we’re at the end of Induction, if you can believe it. The most intense, worst part of leukemia treatment, according to our doctors and nurses. Tristan did so well, and, again, it’s really only over the last few days that things have become almost unbearable. Soon Tristan will have a couple of procedures that will be used to assess his response to the treatments given during Induction and to create a road map for his ongoing treatment. The weekly bloodwork and Tristan’s condition all indicate that things have gone REALLY well. (Yesterday’s clinic visit showed his hemoglobin at 9, his neutrophils at 3880, and his platelets at a rockin’ 600,000). In a few days, the bone marrow biopsy we’re about to do will tell us if there are leukemia cells in his marrow and bone, and the spinal tap will show if he continues to have no leukemia in his spinal fluid and brain.
Last Tuesday, after our clinic visit, we were given a surprise leave to go home for a few days. Our visit home was fabulous, in large part, I think, because it was unplanned. No big preparations undertaken (thanks, in part, to Tristan having pretty solid immune system on this trip home and there being no need to autoclave the house from top to bottom), and no big plans made. On Wednesday, we drove home to Kneeland, making a stop in Ukiah to eat Mexican food at an outdoor restaurant with our good friends Peter and Laurel. Tristan did great on the drive and was SO happy to be on his way home.
At home, Tristan was overjoyed to be with his brother and sister again. I cooked dinner Wednesday night, and we had the best family dinner I can recall. In the past, they have occasionally been…regrettable. At this one, the kids were lively and cheerful. Nobody intentionally sang loudly to drown out his or her siblings. Everyone ate well. (Especially Tristan.) We had a hilarious conversation about how to prep Little Brother for his interview with the Make a Wish Foundation, ensuring that his wish is something we’ll all enjoy, and is not wasted on a request for a MacDonald’s Happy Meal or something equally disappointing. Thursday morning we all had a slow morning at home. Gary played with Tristan in his room, and then all three kids played together for a while…without fighting! Tristan and I had a quiet afternoon at home with Oma, who came up to our place from town. I went out for a run with my Kneeland “neighbor”, Melinda. It felt great to be home.
Friday morning Gary and the big kids left for a family reunion (his mom’s side) in Sacramento. Tristan and I headed down the hill and spent the afternoon and evening at Oma and Nagypapa’s in town. I didn’t want to be alone with Tristan at our place — I’m not super stressed out about taking care of him, but this was our first time away from our San Francisco safety network, and it simply felt better to be down in town. Also, I think we would have been sad to be at home without the rest of the family. We had a quiet afternoon and evening. Tristan is definitely low energy, but, at the same time, sort of agitated by the steroids. He doesn’t want to do anything active, but, at my parents’ sat for a long time to stack blocks and to put little plastic creatures (Trashies) into little plastic trash cans. He’s trying hard to be a good guy, but he’s not exactly filled with joie de vie. Again, I tell myself Induction is the hardest part and we’ll get through.
Back in the city, Tristan and I continued our many walks and runs. We’ve found a beautiful seacliff park at the end of Geary that overlooks Ocean Beach and Great Highway. The hike up to Geary from Chris and Agi’s is a good one!
Yesterday I found a few minutes to read parts of a book about childhood leukemia that was given to me by the hospital social workers. I started with information about the drugs and how they work. I was interested and excited to learn that Vinchristine, which has been the chemo drug Tristan has gotten weekly throughout Induction, is derived from the periwinkle. I knew Phoebe would love this — she loves to pick periwinkle flowers, and all three kids like to crawl commando style hidden in the lush blanket of periwinkle plants on the northwest side of our house. Thumbs up for cancer-fighting plants!
I may send a follow-up email this afternoon after I have some more information. Right now I’m waiting at Tristan’s bedside in Surgery Recovery for him to wake up. He had had his biopsy and lumbar puncture and is still knocked out. After last night, I wouldn’t be surprised if he sleeps a while. Earlier I held him while he went under, and then dashed down to the cafeteria to pick up his order: french fries; pirate booty; and ranch dressing. I have them here for him to eat as soon as he’s awake and begins demanding sustenance. In a couple of hours, we’ll meet with Dr. Kumar. I have many questions to ask her about Tristan’s medications over the next week (possibly no steroids!!!!!!) and our plans to head home tomorrow. Will update!
Follow-up on yesterday’s email: heading home!, August 19th
We’re heading home in a few minutes, for almost a full week back in Kneeland!
Yesterday afternoon we met with Dr. Kumar, our outpatient nurse Ilana, and the attending oncologist at the pediatric oncology clinic. They were full of excitement and praises and congratulations about getting through Induction so smoothly. They were almost incredulous that Tristan got out of the hospital so quickly and stayed out of the hospital, stating that most kids either stay in throughout Induction or end up back in after they develop fevers. With the exception of a fever our second night in the hospital, Tristan stayed fever-free the whole month. Yes!
I also learned that Tristan won’t be on ANY steroids for a few months. The doctors and nurses assured me that I will soon be able to recognize my son once again in appearance and behavior. In addition, they don’t expect that Tristan’s numbers will again drop as low as they did in Induction. That’s something I hadn’t understood — I thought it would get really bad again and that he’d surely again be neutropenic. Could happen, but not expected to. Yes! Finally, and because of this expectation that Tristan’s numbers will stay good, we’ve been excused from our bloodwork scheduled for next Monday.
So, our next procedure is Tuesday August 25th. It’s a big one, a real surgery. Tristan will have his port placed, get another lumbar puncture that marks the start of the Consolidation phase, and we’ll have to spend the night in the hospital. Consolidation, I learned yesterday, is focused on blasting the spinal fluid with chemo. The lumbar puncture Tuesday will be the first of three during Consolidation — three punctures, three anesthesias. I’m happy to go off steroids, but perhaps not so happy about these big procedures.
We’re packing up and heading out. Tristan is excited to go home, but today his legs hurt a lot and he doesn’t want to walk at all. This, too, is nothing that surprises the doctors. It’s a common side effect of Vinchristine and, sometimes, of the steroids. Not fun though.
I hope this week to see family and friends in Kneeland. We’ll figure out safe, outdoor ways for you to see Tristan. He’s excited to see you!
Great news!!!, August 21st
Yesterday I had a phone call from our outpatient nurse, Ilana. “This is gonna make your day,” she said. She had the results of Tristan’s Tuesday bone marrow biopsy in hand. This particular biopsy is a really important one, used to assess Tristan’s progress during Induction and then to map out his treatment plan for the next almost-three years. As I understand it, these results, together with the genetic markers, will place Tristan into either a high risk, average risk, or low risk category.
“The residual leukemia is ZERO!” Ilana said. Yippee!! That’s the best news we could have had. Of course, the treatment plan goes on for the duration, as we have to make sure to obliterate every last stinkin’ leukemia cell that is lurking here or there. But still, great news!!! I have my fingers crossed that Tristan will be assigned to a Low Risk category, which may mean some phases of treatment are less aggressive than they might otherwise be. We’ll know next week.
We are having a wonderful time at home. Tristan is SO happy to be with his siblings. Tomas deserves really special credit — he is an amazing big brother and is treating Tristan with such kindness and gentleness. Yesterday afternoon he played outside with Phoebe and Tristan for a long time. They dressed as knights and wore pretend armor and carried pretend swords. There were wagons involved and Otis, Tomas’ dog, seemed pivotal (though perhaps of his own making). I was making dinner in the kitchen and watching them out the window, wondering if I shouldn’t be letting this happen. It all seemed so…normal. But, they weren’t doing anything dangerous (after I put a stop to a plan for putting a car seat for Tristan into one of the wagons). As long as Tristan wasn’t falling and getting injured, and as long as all six hands involved were scrubbed clean afterward, I figured we were okay. So far so good! And Tristan was incredibly happy.
Also, Tristan had his first real bath in almost five weeks. I forgot to mention that his picc line was removed on Tuesday, making way for the overdue bath. He and his sister really enjoyed their soaking, and Tristan was especially pleased to discover that he now floats…