The Tristan Diary Part 2: The First Week Out

Tristan has been out of the hospital for a week, during which he continued his leukemia treatment as an outpatient. Below is a journal and photos of the week.

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Getting out! Wednesday, July 30th

Yesterday was our tenth in the hospital. We were excited all morning because the necessary factors seemed to be aligning for us to be discharged. We watched movies, read again all the books we had borrowed from the playroom and would soon be returning, packed, and ate. And in Tristan’s case, ate more, and more, and…He is one hungry guy.

Our visit from the doctors was great, and they brought more good news. The reports had come back on some of the genetic markers being tested in Tristan’s leukemia cells. I never before would have thought I might be happy for something called hyperploidy, but I’m overjoyed. Tristan’s leukemia is a form called hyperploidy — his leukemia cells have extra chromosomes. People with hyperploid leukemia fall into what the doctors call a “low risk” group — one with a favorable prognosis.

The doctors also wanted to know if I felt comfortable taking Tristan away from the hospital. They said many times that we are welcome to stay for a few additional days if we want. They went over the actions to be taken if anything worrisome comes up. There is an incredible system in place for helping Tristan as quickly as possible, including 24 hour numbers to call and a “VIP” card that gets Tristan into the ER immediately. I told the doctors I feel like we’re ready to go and feel comfortable with the systems in place for getting help when we need it. We’ll be back in the hospital Thursday for bloodwork and a checkup, so we’re not being cast out into the sea forever.

Nurses came to train me in cleaning Tristan’s picc line, and the hospital arranged for the supplies needed for that to be delivered to my brother’s apartment. Yesterday a pharmacist had already delivered Tristan’s drugs to me and had given me a careful explanation of each.

Around three a nurse came to discharge us! A man came to help us get to our taxi, as our belongings had magically multiplied in volume about four-fold. He transported them down the elevator in a red wagon. Handy, those wagons are. We taxied to Chris’. It felt amazing to be outside!

Tristan walked around Chris’ happily on his wobbly legs. He unpacked all of his trucks and stuffed animals. He ate a gigantic snack of salami and pistachio nuts while Chris cooked dinner. Then dinner: roast chicken, gravy, mac and cheese, rice, roasted potatoes, and broccoli, all per Tristan’s request. Also on the table was bread and triple cream St. Andre cheese, which Tristan pronounced “the best cheese ever.”

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He’s still asleep now. I’m sitting here loving how I can hear the sounds of ocean liners and sea gulls from the window. Later today: a long walk on Ocean Beach!

Thursday, July 31st

We are now safely installed at Uncle Chris’ apartment near Ocean Beach. When we arrived Tuesday afternoon, the fabulous Aunt Agi met Tristan with a huge firetruck balloon that is now decorating our room.

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Tristan seems very happy to be here, especially happy to move freely, unattached to Walter the IV rig. He is walking very unsteadily though, and he’s lost quite a bit of weight. That hits me hard, his skinny legs.

We had a nice morning yesterday, eating a long breakfast and going nowhere in a hurry. Then we suited up and headed out for a midmorning walk with Agi. Tristan was desperate to find a kids’ park, and I wasn’t finding the right way to tell him that he can’t go to kids’ parks. (I’m already searching on Craigslist for backyard equipment, so we can make Tristan his own kids’ park in Chris’ backyard.)

Only a few minutes into the walk, we had our first scare. Tristan’s lower lip started to bleed. Just a tiny, tiny bit. Maybe he had bit it, or maybe it’s simply chapped. The bleeding didn’t stop right away. as quickly as bleeding on one’s lip usually stops. We were on our way to meet Kinari, who was going to join us on our walk. I had her look right away, and she encouraged me to call our outpatient nurse, agreeing that the small cut didn’t appear to be clotting. The nurse agreed that we should come into the clinic to have Tristan’s platelets checked. He is due for them today (Thursday), but maybe needed them sooner.

I put some things in an overnight bag, as I’ve been coached by the nurses to do, installed Tristan’s car seat in Agi’s car, and Agi drove us to the hospital. We were put in an isolation room at the clinic, where Tristan was given a movie to watch and an iPad to play on. He was miserable to be back in a hospital setting to soon, but somewhat appeased by the gadgets. His blood was drawn and checked stat.

His platelets had dropped sharply since the day before, but they were still high enough to put off another transfusion until the scheduled time today. Tristan got to pick a prize from a huge bin, Agi picked us up, and we came home to Chris’s.

Phew. The whole thing was kind of like a drill. It wasn’t fun, but now we know where the clinic is and how to execute a quick, on-the-fly trip there.

Today we will head back for the transfusion and checkups after lunch.

I miss Tomas and Phoebe so much, and look forward to seeing them this evening when the rest of the gang will arrive for the weekend at Chris’ place. They seem like they are doing really well, and Gary is doing everything in his power to set up each day with fun things for them to do and family to be with them. But I miss them a ton.

Tristan has been saying often, “I know I’m sick. I know I have to take my medicines and go to the doctor. I know I have to fight my battle and make my sickness go away. But I’m just sad. I miss Tomas and Phoebe.” We talk a lot about how his sickness is going away, and that it simply takes a long time to make it go all the way away.

On a sweet note, Tristan is receiving photos of firemen in front of their trucks, holding up signs to support him, from fire stations across the country. Here are some of those, in addition to a photo Uncle Chris took for Tristan of Agi with the “Dragonfighter” firemen in New York City’s Chinatown.

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Short Friday review & giving you all a break, August 31st

Tristan is, at this moment, eating his second bowl of macaroni and cheese. For breakfast. And calling for his third.

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Yesterday was great. With Gary here for backup, I went for a long (for me) run along the beach, a walk with the kids during which Tomas heroically pushed the stroller across a hundred yards of sand so we could take Tristan to the edge of the waves, another walk with Gary and Tristan, and a quick dash to Safeway to satisfy Tristan’s demand for Annie’s macaroni and cheese. The orange kind, with bunny shapes, he specified.

Tristan does not have any scheduled appointments until Tuesday August fourth, when he’ll have his blood checked again, possibly receive platelets and blood if he needs them, and get his weekly chemo treatment of vinchristine.

So, I thought I should maybe give you all a break from my overly long, overly frequent emails. But I can’t promise there won’t be anything interesting that prompts another one. Point is, don’t worry if you don’t hear from me for a few days.

Platelets and hemoglobin and neutrophils, Oh My, Tuesday, August 4th

Here’s an update on happenings since last Friday…

GREAT news today! Tristan and I just returned home from the clinic, where Tristan’s blood was drawn and evaluated, he got his chemo push of vinchristine, and his dressing was changed. It was a LONG afternoon…but the numbers were great! Tristan’s hemoglobin has held steady at 9 (grams per deciliter) and his platelets have doubled to 75,000 (platelets per microliter) since last Thursday. (They bottomed out at 9,000 our first week in the hospital, and they’re in the 200,000s for a healthy person.) On the down side, his neutrophils are still very low, meaning he’s still extremely immune-compromised.

I was relieved for the good news, as Tristan has been fussy, low energy, coughing, and really pale for a couple of days. Back in the hospital, because he was coughing a bit, he was tested for viruses and diagnosed with rhinovirus, which, if you go to daycare or pre-school, is pretty much par for the course. But, we have to keep our eye on it, so I was taking his temperature just about every hour yesterday. No fevers, thank goodness. If he gets one it’s game over on Ocean Beach, and back to the hospital for us. Anyway, probably the virus just had him a bit down the last couple of days. On the upside, because he’s tested positive for it, he gets a comfortable isolation room with a big tv at the clinic. No chemo cubicals for the little prince!

We saw Dr. Kumar at the clinic (the fellow who works with our attending, Dr. Sabnis), and she emphasized how well Tristan is doing and how good his numbers are. We talked a bit about the schedule for the next few weeks and….drumroll…

If all keeps going this well, and the good trend is really a trend, we get to come home to Kneeland on the 18th or 19th of this month for about five days. FIVE DAYS at home!!!! That marks the end of the Induction phase of Tristan’s treatment, which is one of the two most intensive periods. After Induction (which makes me think of aliens kidnapping sleeping humans — is it just me?), comes Consolidation (which makes me think of a need for laxatives, as in Tristan’s case, a side effect of the chemo drugs). Consolidation is a less intensive phase that, we hope, will mean a few days home, and few days in San Francisco, for a month. So, keep your fingers crossed folks. Tristan the Fireman and Mama Llama are comin’ home!!

And now, just a bit on the last few days: We had a wonderful visit from Gary, Phoebe, and Tomas. Tomas golfed with Uncle Chris; Phoebe went to the Cal Academy of Sciences with Aunt Agi, her cousin Michelle, and Michelle’s five year-old twins; we all had walks together on the beach; we assembled a ride-on firetruck for Tristan (it squirts water!); and Gary and I got to see our old friend Cam, a fellow Indonesia / tropical biology person who happened to be in town. Best of all, Phoebe performed a ballet that she choreographed. It involves first a good pink fairy princess and then (costume change) a bad dark fairy. Tomas was reluctantly roped into playing a role in which he fights the bad fairy. The show was spectacular. The whole visit was fun and exhausting; Tristan and I collapsed on the couch after Gary and the kids left on Sunday. Since then, Tristan and I have been running, walking, visiting a nearby flower garden in Golden Gate park, reading, and watching Netflix. We were kind of stressed going into the clinic visit today, and are feeling great now that it’s over and went well.

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Tristan said to nurses as we left the clinic today, “Do you know, I’m awesome?” And he is.

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4 thoughts on “The Tristan Diary Part 2: The First Week Out

  1. Thanks so much for doing this so we can up to date without having to tax you. Hugs X 10 to the tenth power.

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  2. Toni – Sounds like you and Tristan and the whole family collective are kicking butt, thanks for sharing such scary yet inspiring moments. If you need a non-essential loyalist to come down and slap that one doctor (purely to improve your morale), I volunteer. Hang in there.

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