Wednesday, December 23rd

I feel so gypped. So ripped off. So ROBBED of an important experience.

How many times have I written of how much I suffer with Tristan at the clinic? The interminable waiting, the terrifying medicines, Tristan’s tantrums when his port is accessed, and, simply, the cumulative number of hours spent there. It has been really, really hard.

Gary arrived in San Francisco yesterday, and today he, as well as Phoebe, joined us for our clinic visit. I wanted Gary to see what we go through, to join us for the full experience. I wanted him to meet the good people who take care of us there, but also to FULLY experience the suffering.

Things did not go as such.

Tristan practically skipped into the clinic, joyfully announcing, “I am HAPPY! Because DADDY is here today!” He was smiling and cheerful. He was a perfect, cherubic little angel, sweetly complying with the medical assistant to get his weight and height. ZERO resistance to the blood pressure cuff (which, as you’ll recall, is frequently enough of a problem to send Tristan’s blood pressure rocketing through the roof, making doctors want to put him on blood pressure meds). Happy, happy, happy.

There was no wait. Five minutes after arriving, we were seated in a chemo cubicle. Daddy ended up in the special massaging Lazy Boy with Tristan in his lap. The nurse showed up with the chemo tray only a few minutes later. (It usually takes at least 45 minutes.) I asked Tristan, “Do you want Mommy to sit there with you for your medicine, or do you want to be in Daddy’s lap?” I mean, he and I are in this together, right? “Daddy’s!” was the gleeful response. WTF!? So, I sat in a hard, uncomfortable chair. Phoebe and Tristan were soon absorbed in iPad’s. The chemo was done in the blink of an eye. No long infusions needed for this one. No nervous nurse waiting bedside, checking Tristan’s vitals and looking for signs of allergic reaction. After four days in a row of chemo, Tristan had his port de-accessed, something for which he was eagerly waiting. Removing the bandages usually causes a major tantrum. Today: barely a wince, a minor whimper.

Then, one of the medical assistants came around and offered Gary a really fine scotch and soda…Ok, just kidding about that part. But I really wouldn’t have been surprised. That’s how easy things were going.

Then it was time for Tristan to get a prize from the prize bin. It’s usually a tiny piece of junk from the Dollar Store. Today: A giant robot for Tristan, plus a stuffie for Phoebe, orange soccer cones for Tomas, and a Santa hat for each kid. Gifts were spilling out of the stroller as we tried to leave. We needed a pickup truck.

So, on a Scale of Suffering, 0 to 10, today’s visit to the chemo clinic was 1.5, max. I could hear Gary’s thoughts: Hmmmm, that wasn’t so bad. Wonder what the big deal’s been? Piece of cake! Guess Toni has been exaggerating, as usual….Ug. I really wanted him to feel my pain. We were laughing in the car the whole way home about it…but grrrrrrrrrrrrrrrrrrrr.

Today was the fourth in a four-day stint of chemo. Sunday was the first day, which required being in the hospital, as the clinic is not open on weekends. On that day Tristan was given cytarabine and cytoxin. The latter of these requires a full hour to give and then four hours of infusion to protect Tristan’s bladder, so it ended up being a full day inpatient. It wasn’t so bad — it was pouring rain outside and, while the rain ran in sheets down the window, we read books and watched movies and visited with our favorite inpatient nurses, including Kim, who buzzed our heads back in July. On Monday Tristan got cytarabine in the clinic, and yesterday (Tuesday) Tristan first had a lumbar puncture in the OR to give him methotrexate in his spinal column and to check his spinal fluid for leukemia cells, and then had a clinic appointment for more cytarabine. Both Monday and yesterday my father joined us for the whole shebang. My father got more insight than Gary, I think, into the suffering, and I was glad to have him with me. A highlight of the experience, for me, was when he and the OR nurse got into a prolonged conversation in Italian. I couldn’t tell you how it happened, but there they were, babbling away over Tristan’s bed as he slept off the anesthesia.

Next week will be similar, with cytarabine in the hospital on Sunday and in the clinic Monday, Tuesday, and Wednesday. On Wednesday, a week from today, Tristan’s counts will drop dramatically. This time, it won’t only be the neutrophils, but also the white blood cells, red blood cells, and platelets. It’s all on purpose, engineered to happen. And then we wait. We’ll do his labs every other day, and there’s a 9 out of 10 chance that Tristan will need transfusions of one or more blood products if the numbers get too low. We are probably not looking at being home before the third or fourth week of January.

Tomorrow: Christmas Eve! Santa has been EXTREMELY generous this year. I think the kids will be happy.

Friday, December 18th

Yesterday morning I got devastating news from the mother of the the little boy from Mill Valley whom we met in the clinic back in September, who has leukemia, and whose aunt is a firefighter in the city.

The mom was in tears. On Tuesday her son had had a routine lumbar puncture. It came back showing full blown leukemia. A relapse. They are in the hospital, and starting all over again, and the little guy is really sick.

I was crushed for two reasons. First, I get exactly how my friend feels. I can 100% empathize with her. I fully understand that her life just shattered into a million pieces. On Wednesday she quit her job as a schoolteacher, a job she had only been able to go back to this school year, when her son went into Maintenance. And now, three weeks in the hospital, another round of Induction, which will be doubly severe. I love these guys and am so very sad for them.

And second — I’m sure you know what I’m going to say — this is terrifying because the boy had a great prognosis. He has the same form of leukemia as Tristan, had never before had leukemia cells detected in his spinal fluid, and had, like Tristan, pretty much sailed through much of the early tough stuff. So, the mom’s news over the phone was more or less like having a sharp metal garden hoe raked through a shitload of fears that I had barely put to a very shallow rest. I spent lots of yesterday crying. Tomas knew something was very wrong as soon as he got off the school bus and saw my face. He and Phoebe gave me dozens of hugs throughout the afternoon. I was just so wrecked. There it was, staring me in the face: I will NEVER not be worried about Tristan.

But I did think on, and I did get to a…better??…place. I don’t think any mothers don’t hold in their hearts some level of fear about their kids, all the time, every day. We all do. But we keep those fears tethered to a stake deep inside the left ventricle so that we can function. We mostly have to just put them away, carefully harvesting tiny amounts of those fears when we repeatedly tell our kids to stay away from the road or to climb down from a tall stool. Sometimes, at least for me, some of those fears come untethered late at night and I have a few sleepless hours while I wrestle them back down. But I can squash them down, and I do, and so I’m not incapacitated. Point is, this is no different. I’m hammering in another stake and tethering to it the fear that Tristan’s cancer comes back.

To be alive is to know you can die. In five minutes, or in a day, or in a year, or maybe not for a long, long time. If you can’t die at any moment, you’re not alive. To live happily, you know you can die, and you appreciate the fact of being alive, but you put fear of death away deep inside. Shit. It is what it is, right? Tether it and go on, Mommy.

Tristan and I are still in limbo here in Eureka. We did his labs yesterday at St Joe’s. They were slightly better than last Sunday, but not much better: ANC 500, still neutropenic. So, we did his labs again this morning. The suitcases and a million Christmas presents are in the car, waiting to be transported to San Francisco, where my family will converge in the next few days. If Tristan’s numbers are better than yesterday, we’ll head south today. If they are not, we’ll have to do labs again tomorrow, and his treatment will be pushed back a day. With each delay, our chances of celebrating Christmas Eve in the hospital increase — we’d have to be admitted to the hospital for however many consecutive days Tristan needs chemo while the clinic is closed or booked full. His next round is four days straight. If we can start tomorrow, we’d be in the hospital for chemo Saturday and Sunday (overnight Saturday), and then in the clinic Monday and Tuesday. If we start Monday, it’s Christmas in the Heme Onc ward. Sixth floor, get ready for a whole lotta Gorog-Paoli champagne consumption and loud Hungarian Christmas songs.

Tomas and Phoebe performed in their school play last night. Delays or not, I was so fortunate and happy to be able to see it. They were spectacular, and the whole play was a hilarious and colorful crazy story about famous characters who fall through a swirling vortex and end up in the wrong scene. My favorite part was when the Mad Hatter sat at a banquet table with Varth Dader (who told the Hatter in an asthmatic wheeze, “I am your father.”), Queen Amygdala, Hewey, Soda, and Princess Grayuh. (Get it? My fave is Queen Amygdala, instead of Queen Amadala…) It was loads of fun to see.

Also, this past week, my best friend from high school visited from Vermont. Katherine stayed three nights, and we got lots of chances to do a whole lot of talking, which was great. She and Tristan really hit it off.

More soon, when we know what’s up.

Newsflash: we’ve just been cleared to go. Tristan’s ANC is still only 500, but our doctors and nurses were comfortable with calling it stable (as in not dropping) and expecting it to increase over the next day. We’ll start Tristan’s next round of chemo on Sunday in the hospital…so we’ll be done with the four-day round before Christmas Eve day. Phew. We’re hitting the road.

 

Sunday, December 13th

“Mom! Mom! I washed my hair!” Tristan told me proudly the other night as Oma was getting him out of the bathtub. “Good job, Sweetpea!” I responded with exaggerated enthusiasm. I looked at Tristan’s bald head, wondering what he thinks he washed. I guess last week’s buzz cut was a good call. He seems to have made the transition from hirsute to cue ball pretty smoothly. Or simply without an awareness.

Tristan and I went to St Joe’s Friday to have his labs done. The results were to decide if we headed to the city today or not to begin another round of chemo tomorrow…but instead they ended up extending the limbo. Tristan’s ANC (neutrophil count), came back at 600, much higher than expected but lot quite the 750 needed for the go-ahead. The concern at 600 was that this might represent a number temporarily and falsely elevated by the course of steroids that Tristan just finished a few days ago, but that is still in his bloodstream. So, we needed to do his blood counts again this morning. Suitcases packed and in the car, we waited in Eureka til just after noon for the results.

This was a good exercise in adjusting expectations. Flexibility required.

And…we’ll be home for another five days. Tristan’s neutrophil count fell again as the steroids cleared from his system. The big, bad side of this is that it means the intensive phase of treatment we’re in will be over later, rather than sooner. But there are many more points on the good side: I can do some Christmas shopping this week; I can help Tomas get his costume together for the school play; I don’t have to speed back from the city on Thursday afternoon to make it to the play; I can enjoy with the kids the big snow we are having; Tristan’s chemo will not fall on Christmas and will be finished (for this intensive phase) by New Years; and on Christmas he’ll probably still be feeling pretty good. (His counts are expected to fall dramatically just after the last day of chemo in this phase.) You can see, I’m working on adjusting my expectations. If flexibility in expectations has a physical manifestation, I’ll be a yoga guru by the end of this, able to twist my body into the shape of a pretzel. Let’s hope so.

Tristan is a chunky monkey again after his second week of steroids, plus another week of still riding their appetite-increasing effects. This time around, he developed an obsessive taste for linguine, chicken broth, and chevre spread on orange cheddar rice crackers. Breakfast. Lunch. Dinner. Had to be to the same each time, and each item had to be served in a different dish — nothing touching.

Tomas has been sleeping on a fold-out mattress in Tristan’s and Phoebe’s room since Tristan’s hair fell out a week ago. I think seeing his little brother go bald kind of hit him. Maybe it was the first tangible indication to him that this thing with Tristan is real. I’m glad he wants to sleep next to his siblings. I feel like he’s watching out for his brother. He hasn’t actually verbalized any of this, but that what I think is going on.

We set up a Christmas tree yesterday, a small one, as we expect to be in the city for Christmas. Too small for the number of ornaments we have. By the time we were done, we had only used a fraction of the decorations we have, and the tree looked as though it had caught in its branches a ton of flotsam that had streamed by it. It is the messiest Christmas tree I have ever seen. I love it.

The snow is so beautiful. The weather built up for days and days, with incredible winds that shook our house and brought down a big pepperwood tree, and lashing rain that came in under the doors. Finally, early this morning, the rain turned into gigantic snowflakes that accumulated quickly into a few inches of snow. Tomas lost no time in pulling out the sleds and strapping on a pair of skis. Phoebe was a pink wonder from head to toe in the snow while Tomas stood below her on the slope to make sure she didn’t zoom away into the woods. Tristan rapidly decided he hated the cold and wasn’t interested in playing in the snow. Maybe if the snow keeps up over the next few days he’ll change his mind — a benefit of staying here this week.

 

Monday, December 7th

Tristan is in a steroid craze that — sometimes — is almost comical. His mood swings from low to high, then plunges again unpredictably. The other morning he was stomping around telling his big brother (who could squash him with one finger) that he’s going to chop off his head and kick his butt, and the next moment he was singing to a happy, cheerful tune, “My mommy and daddy just don’t care,” over and over again. I don’t know where he gets these things. Let’s blame it on the older siblings…Though I did get busted yesterday morning. Gary had Tristan and Phoebe outside while I shopped with Tomas for Christmas cookie-making supplies. Tristan said, “Whew Daddy, it’s cold! You’d better yip (sic; zip) up my jacket or I’ll freeze my balls off!” Gary stifled a chuckle and asked Tristan where he learned that. “From Mommy,” he said. Shoot. There is no escaping that accusation. It’s possible that my belief that my kids can learn the right and wrong times to use profanity will fail with my third child. Uh oh.

My littlest is also often full of love while he’s feeling so low. The other day he got a new small Lego. When his siblings snuffed and snorted their disappointment at being denied a similar gift, Tristan said, “Guys, I don’t have any present to give you, just nuggles and tisses (sic; snuggles and kisses) and love.” During some periods, he says, “Mommy I love you,” about every seventeen seconds.

Tristan’s hair started falling out Friday morning. He was very, very tired and wanted to lie on my chest much of the morning. I petted his head, and his fine baby hair stuck to my fingers. Despite my efforts to be proactive, buzzing his head back at the end of July, I had started to wonder if he might somehow get through this with his hair still on his head, and I had let his hair grow out a bit. Saturday we got the clippers out again and buzzed him very short. Somehow it’s just better this way. I don’t want to see his baby hair on his shirt, and the couch, and my fingers. My nurse friend Khara says he’s going to be a gorgeous little peanut-head. I think she’s right.

I’ve been thinking a lot about how strange it is to purposefully do such scary and dramatic and awful things as chemotherapy as to my son. I get it. I get that it works. I get that I have to do it, that there’s no choice. But to hurt my son, to torture him in this weird chemical way, on purpose, to achieve some greater good…it’s simply hard to swallow wholesale without some serious spiritual and philosophical angst. Three years from now I’ll look back on all this and will know that it was all worth it. Right? Right. Definitely, certainly, undeniably right. Gotta go on that.

We’re home and happy to be home. Tomas and Phoebe and I made sugar cookies yesterday. Tristan was too tired and instead sat on the kitchen couch. This morning we are at Oma’s while the big kids are at school. We’re hanging in there, and having moments of fun when we can. Tristan is really a positive little guy, and seems to try to make the best of most things. He keeps saying, “I’m not sick anymore. It’s just the medicine that makes me feel sick. But I’m not sick anymore. My sickness is gone.”

Just a few photos from recent runs. I love the contrast between our windy mountain and tough-love Eureka.

 

Tuesday, December 1st

Tristan’s blood counts have dropped, as they’ve been expected to do, and today he is neutropenic. We had a clinic visit today; his labs were drawn and he was given vinchristine and doxorubicin, as his final chemo treatments during the first half of Delayed Intensification.

Now we wait. For Darth Nadir. The nadir is the lowest point of something. In pediatric oncology, it gets used as a verb. Had Tristan nadired yet? I’m asked. Today only his neutrophils are low, but over the next two weeks, all of his counts will drop, some of them to zero.

Then, when the counts are high enough again, we go on to the second half of Delayed Intensification. Which will make his counts drop so far that he will probably need blood products — platelets and hemoglobin. Ninety percent of the kids do, I’m told by our outpatient nurse. We are scheduled to begin that second half, which consists of chemo four days in a row for two weeks in a row, on December 14th.

So, where we have Christmas depends on Darth Nadir. That is, when he comes and when he decides to leave. And, then, when we get to go home again after we finish Delayed Intensification will also depend on Darth Nadir. May the force be with us.

When I last wrote, we were all together as a family at a hot springs B&B in Ukiah, halfway between home and the city. From there, Gary took Tomas and Phoebe home, and I brought Tristan back to San Francisco for another appointment at the clinic on November 24th. That appointment went fairly smoothly, thanks in part to the fabulous Nurse Evan, who possesses the unique ability to put Tristan into a meditative trance before he takes his blood pressure. Tristan HATES the blood pressure cuff, and, when anybody else takes his pressure, they soon decide they want to hospitalize him for astronomically high readings — which, in fact, are only reflective of a furious three year-old.

If only Nurse Evan could do everything. Seems he’s not chemo certified. Today Tristan was furious, probably because when he’s neutropenic he’s very grumpy, about every single thing — the cream to numb his chest, the needle accessing his port, the sticky adhesive over it. It was not an easy day. Thankfully Tomas elected to join us on this trip to the city, and he’s been so helpful. In the clinic this morning he did his best to distract Tristan with video games on an iPad and helped dress up Tristan’s favorite stuffie — Blue Dog — in a police uniform supplied by one the child specialist social workers.

Between these last two clinic visits we had five days at home and celebrated Thanksgiving at our place with my parents and Chris and Agi. The kids are extremely excited, as we’ve all just learned that Agi is currently gestating for them a cousin. Tristan, in particular, is happy to know he’s going to be bigger than somebody else in the family. Phoebe is generating mountains of artwork to celebrate the baby girl. Chris and Agi will need to rent a storage unit to keep it all, along with the boatloads of baby stuff I’ve got put away for them.

Back to Kneeland tomorrow…

Sunday, November 22nd

Not sure what it’s preparing me for, but I feel like I’m in some kind of hardcore special ops boot camp. Chemo Camp. I have no idea what special ops training is really like, so this is all based on a superficial image formed by catching bits and pieces of bad fictional movies. But, in my training, instead of a curriculum involving having my head immersed in water, sleep deprivation, crawling miles through thick mud, carrying a massive log for hours, and being tossed into a pool with my limbs bound, instead of all that, my phases of training involve being one-on-one with a three year-old on massive doses of steroids, catering day after day to his mood swings and binge eating; being required to starve my son for 18 hours at a time, time after time, before trips to the OR; forcibly holding his steroid-raging little body while nurses access his port; and sitting to the side while poisons are pumped through this body. It’s horrible. Maybe I’ll come out of this, to borrow a Drew Barrymore line from one of my most favorite films ever, with the heart of a rhino. (From Charlie’s Angels — I have such sophisticated taste).

I’ll definitely come out of this with a healthy cancer-free Tristan. That’s the big prize. But that doesn’t mean that Chemo Camp doesn’t totally suck.

There is, on the other hand, a good side to this all. Aside from the couple of days before leaving home each time, during which I’m uncontrollably sad about leaving the rest of the family and our animals and our place, I look forward to these trips with Tristan. I look forward to having special time with him. I look forward to having a break from the work of home. I look forward to seeing friends and family who live in San Francisco. And, strangely, I look forward to seeing our favorite doctors and nurses and friends at the hospital and clinic. At the beginning of this crazy adventure back in July, I hadn’t anticipated that one outcome of all this would be that Tristan and I would have our own, separate life in the city, one that we can enjoy on some level. To my horror, I just learned from a friend with a psychology background that, not only is this common for parents of pediatric patients, it’s also one manifestation of Stockholm Syndrome, best known for the instance in which hostages become emotionally attached to their captors. Great. Somebody please find me a good therapist. Still, syndrome or not, it’s nice to have a positive side to being away from home so much. I’ll take it.

This past week we had two appointments at the clinic. On Tuesday, after a trip to the OR for a lumbar puncture, Tristan began Delayed Intensification and received his first doxorubicin. He’ll get it again the next two Tuesdays in a row. Getting a new chemo is always stressful, as I don’t know if Tristan will have an allergic reaction or some other awful response, and this particular drug is known to cause heart failure, though usually at higher doses than what Tristan is getting. It’s the reason Tristan will need to have an EKG every five years for…dunno how long. Friday he got his second chemo with peg asparaginase. He had received this drug before in July, on Day 4 of his treatment, but I think I was so out of it that I didn’t understand much about it. Well, yesterday in the clinic there was a nervous crackle in the air when the nurse came in to begin prepping Tristan. Turns out 50% of patients have an allergic reaction to peg, and it doesn’t matter if they had no reaction during the earlier dose. The reaction may be just hives, but maybe something much worse. So, the metal tray that’s rolled in with the chemo in its specially sealed DANGER CHEMO DRUG bag also carries epinephrine. You know, just in case you need it. I cried while the nurse sat bedside for half an hour to check Tristan’s vitals and look at his skin. The whole clinic visit took five hours. Needless to say, Tristan did not have a reaction. He’s fine.

Also with the start of Delayed Intensification, Tristan began steroids again, this time on a truly monstrous dosage. Fortunately this time around it’s not for 28 days straight, but rather for two week long pulses with a week off in between. He’s definitely showing all of the side effects, flipping between furious frustration and manic babbling. This morning he rambled about his delicious hard-boiled egg. We have met Gary and the bigger kids for a weekend at a hot springs halfway between San Francisco and home. The other guests at the B&B thought his enthusiasm about hard-boiled eggs was adorable. I declined to explain that his cuteness is steroid-induced.

It’s good to be here with the rest of the family. We have a cottage with a kitchen and (yay!) no TV. Gary showed up with a blender and a bag of limes, and made us fantastic margaritas last night. He cooked burgers and mac and cheese and rice and anything else anybody wanted while I read books on the couch with the kids. The weekend was designed especially with Tomas, who loves to be in the lap of luxury, in mind, so it was a bummer when he erupted in hives after soaking in the mineral hot bath. But we scrounged some Benedryl from the owners and his skin has returned to its mocha perfection. We just returned from a beautiful hike through chaparral and into a streamside pepperwood forest, where we saw red-bellied newts and an enormous dead rattlesnake. We were stunned that all three of our kids walked the whole way, with only a minor complaint now and then. I don’t know how Tristan did it — he could not walk all the way back to our cottage from breakfast this morning. Must have been the beautiful setting, the special walking sticks Tomas found for everyone, and the good moods all around.

Tomorrow Tristan and I will return to the city for another chemo appointment on Tuesday, and Gary will drive back home with Tomas and Phoebe. I’m happy that we’ll be home before Thanksgiving and will celebrate with family.

Wednesday, November 11th

Last night over dinner Gary and I shared a very hot pepper, picked from our garden just before the first frost two nights ago. That led to reminiscing about what we agree might have been for us the greatest of life’s small pleasures. Yep, we’re pretty sure was ubi goreng (fried cassava) dipped in simple sambal made from mashed up chilis, MSG, salt, and maybe a little sugar, accompanied by scalding hot coffee, Indonesian style with the grounds at the bottom of the cup. Ok, and sometimes that was followed by a clove cigarette, bummed off of one of our field assistants, but I swear that was just a short phase.

Context is important. Although I’m sure I’d enjoy this tasty snack right now, it was particularly buoying given our circumstances at the time, which rank undeniably as the most miserable ones I’ve lived in. Gary and I were grad students, and were on Karimata Island, famed for being a cauldron of dengue and malaria, about 14 hours by slow boat from the coast of southwestern Borneo. The rainy season had just set in so we were permanently soggy and beginning to mold from head to toe. The crew of villagers we had hired to help carry our equipment up to our high elevation field site had been deliberately misled, by the villager who recruited them on our behalf, into thinking they were being hired for the long-term. In anger, they held an all-night rager and ate all of our supplies before departing. So, we were on a diet of rice and Indomie (Indonesia’s version of Ramen). To top it off, we were living in a cave. A dark, damp cave. It had seemed like a good idea at the time, rather than setting up a big tarp to live under, as at our last site. That sentiment was short-lived, and the cave ambiance quickly turned from new and interesting to dreary and depressing.

So, there you have it: we were wet, living in a cave, and eating only rice and ramen. Then one of our field assistants went on a cigarette run, which pretty much involved a full day of hiking down the mountain to and from the nearest village, which didn’t have much more to offer than cigarettes, rice, and ramen…and, thankfully, chilis and cassava root. Andi showed back up with the extra supplies, and one wet rainy afternoon, we all sat in our cave dipping fried ubi into hot sambal, sipping sweet coffee, telling silly jokes, and pretty much 100% enjoying the moment.

Last weekend, I had my 44th birthday, and was fortunate to be home. On that day, too, I got to enjoy one of life’s small pleasures. It was Tomas’ gift to me, an amazing birthday present. After breakfast, he took his brother and sister upstairs to play so that Gary and I could peacefully drink our coffee together. (That never happens. Peaceful coffee drinking.) Tomas played with his younger siblings in their rooms for almost two hours. When they finally came down, Tristan dressed as a pirate and Phoebe as a doctor, Tomas said, “Did I do good, Mom?” It was so sweet, a real kindness. And the quiet time with Gary ranked as high as the fried cassava-spicy sambal-cave combo.

Our most recent trip to San Francisco, on which Phoebe accompanied Tristan and me, was last Sunday through Wednesday. It was a fabulous trip, and so great to have Phoebe along. We drove south Sunday morning and visited our new friends — a family with a three and a half year-old son who has leukemia — at their home in Mill Valley on Sunday afternoon. It was a great visit! Tristan and Noah disappeared into the Noah’s room and played happily for hours, Tristan dressed at Batman and Noah dressed as Spiderman. Phoebe played with Noah’s big sister Maizie. I talked with Noah’s mom and dad, and with the steady flow of the Mom’s sisters and in-laws and nephews and neighborhood kids who dropped in for a Sunday afternoon visit. It was such a pleasure, and I am SO happy to have met another family with whom I can connect over this new life, this life with leukemia and chemo and neutrophils.

We spent Sunday night at Family House. Phoebe was in heaven when she discovered the huge collection of Halloween costumes that had been donated in the previous days. She sighed a big happy sigh and said, “Mom, I LOVE Family House.” She got to keep a beautiful bride costume, and Tristan happily accumulated another fireman outfit. We delivered the clothing, blankets, and books I had brought for the family from Arkansas. I was sad to see they didn’t look so enthusiastic and hopeful as they had on my previous visit. Their premature son in the hospital is doing well, but UCSF plans to transfer him back to the children’s hospital from which he came…back in Arkansas. Back to the same old, same old. They seemed to be trying to make the best of it though, saying it would be better to be near family back there.

Monday morning we had a surprise invitation to move over to my brother Chris’ place, as Chris and Agi didn’t have any tenants in their other units and Phoebe’s foundation-shaking foot stomps wouldn’t drive anyone (other than us) to madness. We met Agi for a beautiful walk in the Golden Gate Park botanical gardens and then lunch in the sunshine at a restaurant with sidewalk tables, after which we moved our things to the empty apartment below Chris and Agi’s. My father arrived that evening, as part of our plan to return Chris’ Prius and drive back home with him. We ended up have a fun, loud, fabulous dinner with all of us there.

Tuesday we had a slow morning and, about noon, the kids and I drove to the clinic at UCSF. Phoebe was a fantastic companion, and Tristan was ecstatic to have her there with him. I took them for lunch in the hospital cafeteria, which is quite good, and they were GREAT. Phoebe spent a long time pushing in all the chairs at the table when we were done, making sure they were neat. Then up to the clinic, where Phoebe played with Tristan in the waiting room, met the doctors and nurses and social worker we see on each visit, and watched unflinchingly as Tristan had his port accessed and was given his chemo. It was great to have her there, and the clinic staff appeared to be bending over backwards to make things smooth for us after my tantrum last week. Phoebe is going to present a photo journal of her visit to her class at school later this week.

That night we had another big loud dinner at Chris’, this time joined by my friend Kinari. Kinari, who is a doctor, made my father extremely happy by engaging him in a long conversation about state of American medical practice, in all its over-prescribing and over-radiating, a topic on which he has blogged and raged, raged and blogged. They saw eye-to-eye on the whole thing. It was fun to watch the exchange.

Wednesday the kids and I drove home together with Nagypapa. The trip was smooth. And now we’ve been home a whole week, and won’t leave again until this Monday. It’s been a good, long time at home. I’ve been running alone and with friends and with Otis the dog on top of our mountain, with Tristan in town. I took Tristan, in a mask, to our school’s Fall Carnival with the rest of the family. At the carnival, Noni showed her usual golden touch by winning every prize she dropped a ticket on, and Tomas won by auction admission to a winter soccer skills academy.

The days at home also included a birthday celebration with Oma and Nagypapa, complete with firetruck birthday cake (maybe this has gone overboard); Nagypapa explaining the New Yorker cartoons to Tristan (he has a sophisticated sense of humor for a three year-old); and the kids’ final soccer game of the season (Tomas had multiple goals and a few terrific kicks right to the mouth of the goal).

Tristan has been happy to be home and seems pretty strong. His appetite is up and down. We’ll do his labs again on Friday.

Crazy fireman-stalker-mom, Thursday, October 22nd

I’m pretty sure I’m developing a reputation as a crazy Fireman-stalker-mom. I swear, it’s not true. It’s just that almost everywhere Tristan and I go, even in the most unlikely places, we run into firefighters and see firetrucks. Last week, while we were home, the Prius announced via its terribly distracting display screen that it was time for an oil change. Friday morning Tristan and I dropped the car at the oil change place, which bears the unfortunate name of The Lube Rack. I thought it was a seedy strip joint before I started getting oil changes there. I unloaded the jogging stroller from the back of the car, crammed the diaper bag and my purse into the insufficient baggage space in the bottom of the stroller, put a carton of eggs in the net snack carrier part, and jogged off with Tristan with a plan to run a loop near the waterfront and over to my parent’s apartment, where I would deliver the eggs to my mom. Admittedly, the stroller was carrying a whole lot of crap one wouldn’t normally take on a jog.

We ran along a path at the waterfront overlooking Eureka’s marina and Humboldt Bay. The bay is beautiful, but the area adjacent to it is sort of a wasteland of stubbly, weedy grass. It’s frequented by Humboldt’s finest “travellers”, the sensitive, PC term, I have learned, for homeless, and seems to be a popular place to poop your pitbull.

Suddenly Tristan spotted up ahead not one, but TWO firetrucks, and a whole lot of firemen. “Look, look, Mom!! Firetrucks! Can we go?? Can we go??” So we jogged up as far as the path went, rounded the turn as the end of the wasteland, and were upon the firetrucks. As it happened, there was Ben, the friendly fireman who, just ten days before, had shown us around Eureka’s Firestation #1. He looked incredulous. “So, like, you were just walking by?” He eyeballed the egg carton. Who the heck runs with eggs? And then I found myself rambling…no, no…Lube Rack…oil change…taking eggs to my mom…Totally unconvincing.

They definitely think I’m a nutter. Toni, infamous in Eureka for showing up whenever and wherever there’s a firetruck.

Tristan was absolutely enthralled. The firemen extended the ladder way up high and did a training exercise involving shooting water out over the bay and climbing up and down the ladder.

Now we’re in the OR. Tristan is still asleep after another lumbar puncture. And, of course, when we arrived at the hospital today, three firetrucks and a whole bunch of red fire department SUVs were parked in front, and a big squad of firemen were trooping into the hospital for an emergency exercise. Thankfully I’m not yet infamous among the SF firefighters, and we were able to anonymously admire the trucks before heading to the OR.

Yesterday morning we had Tristan’s blood counts checked at St. Joe’s in Eureka. Then we waited to see if the numbers were good enough for Tristan to have chemo today. Around noon our outpatient nurse called to say we were good to go — Tristan’s neutrophils are at 1500 and his other numbers good as well. We drove to Ukiah, again spent the night with our friends Peter and Laurel, and left at 8am without eating. Again, 1pm OR time, no food or drink since last night. Tristan was a trooper, fussing briefly only a couple of times about being hungry. The first fuss happened as we were driving into the city. We were and hour and a half earlier than ideal (no major traffic slow-downs past Santa Rosa and Petaluma), and I racked my brain for what to do that could distract Tristan from his rumbling tummy. So we went to TJMaxx and spent money. Tristan got ANOTHER fireman costume, and he helped mommy pick out a couple of sweaters. Seriously, he is a GREAT shopper.

Post retail therapy, we were off to the hospital. After we were called into the OR from the waiting room, we found a pink plastic pushcar in the OR, and I pushed Tristan round and round the floor while we waited. The car played music, which we danced to. We read his favorite Emergency Vehicles book. When he wakes up, I’ll feed him the pirate booty and cookie he picked out earlier, and then we’ll go over to the clinic for his other chemo. Then, to Family House for the night. Long day.

Yelling at the undeserving, lucky breaks & upcoming trip to the city, Wednesday, October 28th

Tristan is pretty low energy these days, and is on the skinny side, probably as a result of the increasing doses of chemo. But he’s in a good mood, and sweet, and is happy to be home playing with Tomas and Phoebe and visiting Oma in the mornings.

Our last visit to San Francisco, which included an OR appointment for spinal chemo and then a clinic appointment for IV chemo, went smoothly but for a large hiccup at the clinic when Mommy, tired and hungry, went bonkers over a stupid glitch and yelled at the most undeserving person around. The OR nurse had forgotten to log the IV fluids given to Tristan while he was under anesthesia. The fluids are given to protect his kidneys from the IV chemo given in the clinic. They take an hour to give, and the point of giving them in the OR was to spare us that hour later, as we went to the clinic straight from the OR. In the end it took an hour in the clinic just to sort out with the OR that, yes, the fluids had been given. But that didn’t happen before I completely lost my shit and shouted at the world’s sweetest medical assistant that, thanks very much for making this harder than it already is, and I can’t really take it much harder, and we’re about to leave.  All sprinkled liberally with the F bomb. Good job, Toni. I have to rely on these folks to help us for the next two and a half years. Way to build a solid, sustainable relationship.

So, next week when we go to the clinic, I’ll be taking sweet Karina a small gift and telling her sorry. I’m so mad at myself.

On the upside, I’m looking forward to our next trip for two reasons. First, Phoebe is coming along with Tristan and me, and  she is really looking forward to it. Second, we plan to visit another little boy with leukemia in Mill Valley on the way down. I had written about this kiddo in an earlier email; he’s the one Tristan and I met in the clinic with his mom, who has a firefighter sister, who Tristan and I had met earlier in…you guessed it…Safeway at Ocean Beach. That little boy has a big sister just a bit older than Phoebe, so it should be a fun date. I’m eager to talk with the mother, as these guys are about a year further along in treatment than we are.

I’m taking with us to the city three big bags of toddler clothing and baby things and winter jackets to give to a couple I met at Family House last week. They are from Arkansas, in possession of few teeth and nothing else (having had their car t-boned by a truck just before their unexpected move to San Francisco), have a chubby curly-haired toddler girl with them and a premature baby in the hospital. The baby is two months old, weighs a whopping five pounds, and has just had his heart reconstructed by the only surgeon in the universe who can do this surgery. Someone at Family House just landed the dad a reasonably paying construction job, and Habitat for Humanity is, hopefully, going to build them a house in Concord. At the shared dinner table, the father told me how the surgeon called him personally to say he’d take on the baby’s case (after initially declining because the three-pound newborn was too big a risk), and how he (the dad) went above the doctors’ heads by going online to arrange free transportation for the baby to UCSF on Louisiana State University’s learjet. Huh? That was my response, too. Well, the guy’s clearly never had a lucky break in his life. It was about time. The mom flew with the baby, and he and the toddler took two flights and six buses to get to SF on their budget. By the time he had finished his story, I was feeling sufficiently guilty about the $9 bottle of Bogle back in my room. And about everything else, too. I will happily hand over to this brave guy as much good stuff as I can get together for them.

We will do Tristan’s blood work on Friday in Eureka and head south on Sunday.

Limbo, Monday, October 12th

This morning, before she went to school, Phoebe changed Tristan’s diaper and got him dressed. It’s not the first time. A few weeks ago, when I came back inside after feeding and mucking the horses, Phoebe called out to me, “Mom, Mom! Tristan did a poo and I changed his diaper!” My joy that my five year-old daughter was helping out was, regrettably, overshadowed by fear that she was exposed to Tristan’s chemo poo. “Oh, wow…but did you…?” I began to respond. Phoebe cut me off. “Don’t worry Mom, I put gloves on.” Of course she did. Why should I be surprised that my tiny daughter not only took the initiative to change her brother’s poopy diaper, but also thought carefully to put on latex exam gloves because she understands that her brother’s poo and pee have dangerous medicine in them? Yesterday, when I asked her for a hug because I was sad about an argument I had with Tomas, she skipped over to a couch, patted the seat next to her, said, “Come on over here, Mom,” and then have me a big hug. In addition, she’s been giving Tristan his weekend antibiotics, a prophylactic against a respiratory infection dangerous to kids on chemo. What a great kid, and emerging as a caregiver. (Yep, I’m leaving out the other stuff, like her two massive tantrums yesterday, the first about the boys being mean to her, the second about lunch. We have all that, too.)

Tristan and I are in limbo. Friday morning we had his labs run at St. Joe’s in Eureka and found that he was neutropenic, meaning his neutrophils were very low, meaning his immune system had become dangerously compromised, probably because on top of the chemo, he has had the mysterious not-chicken-pox virus. Guess that explains why he’s been so tired and fussy. As such, our trip south today for his chemo at UCSF tomorrow is up in the air. We had to have his labs drawn again this morning, and are waiting for the results, suitcases packed and in the car.

Because of Tristan’s neutropenia, during the past week home we didn’t invite anyone to visit and I abandoned trips to the grocery store with him. We watched carefully for fever, which would have won us another hospital stay, no thank you. Despite being unwell, Tristan still managed to have lots of fun. At one point, I sent our outpatient nurse a photo of Tristan standing atop a huge stump, firing a bow and arrow. The picture was meant to convey how well Tristan was doing and what beautiful, healthy surroundings he’s in. Instead the nurse responded with horror, “Is that a bow and arrow? Be careful!” So, rather than communicating to her what a lucky kid Tristan is to be in such a healthy setting, I managed to give her the impression that Tristan is allowed to climb to dangerous heights and play with lethal weapons, unattended and unsupervised. Good job, Mom.

It’s absolutely gorgeous fall in Kneeland, warm and breezy and sunny. This past week I’ve been running from our house up the the kids’ school, which gives me a chance to see our place from above, which I love. We also made a trip to our favorite swimming hole on the Mad River with my friend Tanya. It was too cool for a dip, but Tristan got into the age old sport of skipping stones. And, finally, there was the requisite fire station visit, during which Tristan got to admire Humboldt County’s longest fire truck.

…And the nurse just called with Tristan’s numbers. Oh, to be three and superhero strong and able to snap back like a rubber band! His ANC is now 1400, which means he’s got plenty of neutrophils, which means his immune system is up and running again. His platelets are at 481,000 and his hemoglobin is at 12, high enough for playing with lethal weapons on a tall tree stump. We’re hopping in the car and we’re off to SF for tomorrow’s appointment in the clinic…

Delayed gratification & lumbar acupuncture therapy, Wednesday, October 14th

I’m reeling, having just learned from our outpatient nurse that Tristan’s treatment schedule for the next phase of chemo, forebodingly called Delayed Intensification, will involve a full month or more in San Francisco from mid-December to mid-January, with extra bonuses of chemo on Christmas Eve and New Years Eve. I knew it was going to be bad, but I’m sad to see just how bad. But, chemo doesn’t stop for the holidays, and I get it. I mean, this is war…Though I seem to remember from those Erich Maria Remarque books that WWI soldiers in the trenches did declare a short ceasefire for Christmas…Maybe that’s outdated. No ceasefires this year. Christmas chemo. Champagne and caviar and chemo. Ok, so I’m pissed, too. So, now I work through the sadness and the anger and start planning for Christmas in the city.

Tristan and I made it back today in record time from his chemo appointment at UCSF yesterday. He slept from Santa Rosa to the base of our mountain — four hours. He’s feelin’ good!

We had a good, short trip down south, staying overnight in Ukiah Monday night with our good friends Peter and Laurel. Tristan collected hundreds of acorns with Laurel and sorted them into different ziplock bags based on size and color. He clearly has a future in some kind of botanical taxonomy and classification…or he’s just kind of obsessive like his mama..who happens also to like taxonomy and classification.

Tuesday morning we drove the rest of the way to the city, and went straight to the hospital for his appointment. The appointment was relatively smooth, made more so by a gigantic box of muffins and chocolates given to Tristan by Evan the Nurse. After the chemo, we drove to Family House, unloaded the car, did the parking dance, and went out to dinner at a small Korean restaurant with my friend Kinari. Tristan drank orange Fanta with dinner — chemo compensation. I have no problem with that. I had a large Korean beer. I deserved it.

We’re home for a week, and in the hospital again next Thursday for IV chemo and for an OR procedure — chemo via lumbar puncture. Couldn’t they come up with a gentler word for that? I mean, really, “puncture”?? Someone needs to help people in the medical profession with terminology. I volunteer. For reasonable hourly consulting wages, I will provide friendlier, more agreeable, less terrifying alternatives for “puncture” and “delayed intensification”. Lumbar spa acupuncture therapy? Delayed gratification? Don’t those sound better?

I’m hoping to see lots of friends during this week home and to do lots of runs. Friends, call me. I promise to be light and comical. Maybe.

Mysterious bumps, a grumpy mom, and another hospital stay, Saturday, October 3rd

My throat hurts, I’ve had two nights of crap sleep, and I think I might yell at someone soon. Probably an undeserving nurse, or an underslept resident.

We are in the hospital again, and have been for two nights. Tristan and I drove down to the city Wednesday for a chemo appointment on Thursday. Thursday morning I called our outpatient nurse to give her a heads up that Tristan had the sniffles, which began on our drive down, as well as a mild rash. The nurse said that, short of fever, the runny nose wouldn’t stand in the way of the chemo. She was more concerned, however, about the rash, and asked if I didn’t think it might be chicken pox. I said it didn’t look much like it, so far as I could remember what pox looks like. I just wanted to make sure the dozen or so bumps got looked at in the clinic.

Our appointment wasn’t until 3pm, so Tristan and I got up slowly, had breakfast, went running, went walking, and ordered gyros for a take-out lunch.

Because of Tristan’s sniffles, he and Bianca, his Family House love from last week, couldn’t hang out much. Nevertheless, Bianca gave Tristan two gifts, now his most treasured items — a red Power Ranger and a Paw Patrol outfit. Now I’m very glad I kept Tristan away from Bianca and made him wear a mask in the hallways — Bianca has no immune system to speak of.

At the clinic, Tristan’s rash assumed top priority over chemo. We saw Dr. Sabnis, our primary attending from the beginning of Tristan’s UCSF adventure. Sabnis was concerned about the bumps. He brought other doctors in to look. Nobody could say for sure that the rash looked liked chicken pox, but nobody was willing to saw it wasn’t. Sabnis attempted to get the Infectious Disease team to the clinic to have a look. The hours dragged on and the Hot Zone doctors didn’t show. Sabnis sent them some iPhone photos of Tristan’s skin. More time passed. Eventually Dr. Sabnis returned and said he wanted to admit Tristan to the hospital. I don’t think he managed to get a response from the Infectious Disease folks. He was extremely apologetic about his inability to confirm the possible pox, but adamant that even possible pox is a reason for admission. In immune-suppressed kids, chicken pox can be very dangerous, affecting not only the skin, but the organs, and sometimes causing tissue damage. Six pm was approaching by the time Dr. Sabnis came to give more bad news: there were no beds available for us, especially as Tristan would need a special isolation room, so patients would be shuffled and shifted and discharged and it would be a while. So, we’d need to go to the ER to get things rolling, meaning to have Tristan’s port accessed, start him on IV anti-viral drugs, and have blood taken for a PCR test that could confirm with absolute certainty whether or not Tristan has chicken pox. At this point, Tristan and I were not happy campers. No, we were miserable, hungry, tired, pissed-off campers who have lost the trail, been rained on, had their trail mix ransacked by a bear, and have blisters.

Dr. Sabnis walked us through the hospital to the ER and got things rolling…and we then spent four hours there. It sucked. Tristan threw a tantrum when his port was accessed. He was so tired and so mad to be where we were. On the upside, my brother and my father, who was in SF to bring Tristan and me home, as we were planning to return my brother’s car, came to see us after collecting our things from Family House.

It was 10pm Thursday night by the time we were taken to a room in the Oncology ward. The room has a decontamination chamber where docs and nurses have to put on robes and masks to enter. Tristan is not allowed out. Fun. Not.

Despite the time, Tristan and I watched Cat in the Hat and went to sleep at midnight. “Sleep.” He slept. I did not, much. It’s one thing to be tired and three and oblivious to beeps and lights and rhythmic clicking noises and nurses coming in every few hours to take vital signs and replace IV bags. It’s another to be mom, and pissed off, and tired beyond tired, and unable to ignore the three dozen stimuli within two feet of my head. Arrrggg. Overnight, Tristan’s sniffles progressed into a horrible, barky, raspy cough and I developed a sore throat. At home, Gary’s stuffy head blossomed into a raging cold, I learned the next day.

Yesterday — Friday — was a full day of waiting. Waiting for the Infectious Disease team to show up, examine Tristan’s bumps, and use their genius to confirm pox or no pox. Waiting for the blood test results to confirm the same thing. Waiting for lunch. Waiting for dinner. The Oncology team made its rounds mid-morning and were not able to say one way or another, pox or not. An Infectious Disease resident came by in the early afternoon and was not able to say one way or another, pox or not. Our nurse (Khara, our favorite, who once again claimed us) said the resident confessed privately to her that these did not, to her, look at all like pox. Finally, shortly before cocktail hour (which, sadly, does not happen at the hospital, despite my repeated suggestions that a cocktail cart be rolled around each late afternoon), the Infectious Disease team strolled in. They, too, were not able to, by eyeball, say what they were looking at. They explained that both in immune-suppressed kids, and in kids who have previously had the chicken pox vaccine, the pox present themselves differently from classic chicken pox — they can look like anything, I guess. Back to square one. So when are the bloody blood test results going to arrive? “Oh, well, it’s Friday afternoon now at 4:45, so it probably won’t be available until Monday.” My inner bear began to growl. Did they send the freakin’ blood to China for analysis? The Infectious Disease team departed to consult with Tristan’s Oncology team.

It was well into cocktail hour — the cocktail hour that wasn’t happening — that somebody from the Oncology team came to report that, as Tristan was clearly doing so well, after one more night of IV anti-virals, he would be sent home with oral anti-virals so long as no new bumps appeared overnight. He would be given his chemo so that he could stay on schedule.

So, now it’s mid-morning, after another night of beeping and blinking and terrible sleep, and we’re waiting, again. No news so far. Tristan’s cold has improved considerably.

On the upside, we had a great visit home last week. It was Tristan’s birthday, and the week was filled with things to celebrate that. Tristan and I joined Tomas and Phoebe’s school’s annual field trip to a Cal Fire helicopter base just a mile from the school. Tristan introduced himself to the firefighters as Tristan the Fireman. He got to sit in the chopper with a pilot’s helmet on. I thought I was being careful because the activity was outside, and Tristan wore a mask during the brief tour of the barracks.  Also in celebration of his birthday, Tristan had two separate playdates. These were his first encounters with kids his own age since he got sick. I thought I was being careful by keeping each date to just one, healthy kid. Finally, I took Tristan to visit a fire station in Eureka. He was given a ride around the neighborhood on an engine and a fireman took him on top of a hook-and-ladder to raise the ladder high in the sky. Tristan met the fire station dog, who showed him how to stop, drop, and roll. I thought I was being careful with extra hand-washing afterward. Ug, and now, payback. Mysterious bumps, a cold, and two nights in the hospital.

We also had a family birthday party at Noni’s house, which Phoebe attended dressed as a witch, and one afternoon Tristan helped my father assemble a switchboard for a soon-to-be-solar-powered barn. We had the usual fabulous walks up to the meet the school bus, as well.

I’ve got to go yell at someone now, but I’ll be sure to follow up soon with more news. We want to go home! I’m dying to see what these blood test results eventually tell us. I can’t decide if I’d rather they were positive or negative. Positive, I will think back on how attentive and careful our doctors were, and I’ll feel thankful that everyone kept Tristan safe. Negative, I’ll growl and grump and feel thankful that this particular mis-adventure is over.

Home! Saturday, October 4th

We are home! The drive home yesterday afternoon was exhausting, but, thankfully, Tristan slept from Petaluma to Honeydew – about three hours. Happy to be home!

The verdict, Monday, October 5th

Well folks, the verdict is in.

No chicken pox. The blood test result was negative.

On one hand, the larger, more important, rational hand, I’m relieved and happy. From the beginning of this adventure with Tristan I’ve been told that chicken pox is a bad, scary thing to be avoided. Badder and scarier than plain old chicken pox in plain old kids. Thank goodness my immune-compromised son doesn’t have it.

On the other hand, the grouchy, whiny one, I can’t believe we had to spend two painful days in the hospital being scared and unhappy, all because of a few regular old bumps.

Clearly this second hand is stupid and should be given a good whack by the first one. We are lucky have have such good, attentive doctors and nurses, lucky that everyone is keeping such a careful eye on Tristan, lucky to have great medical care, lucky to be home again so soon.

I’m going to go thumb wrestle myself. Hoping the smart hand wins.