Zoe's Chemo Journey Continues! by Jennifer Yu https://padlet.com/jennifyu/40ll09bejp6p8lp1 Diagnosed with T-cell acute lymphoblastic leukemia on 8/5/2020, Zoe continues to kick cancer's butt with the love and support of family and friends! en-us 2020-11-08 22:09:28 UTC 2023-08-16 19:27:20 UTC hello@padlet.com https://padlet-uploads.storage.googleapis.com/666353925/0c719a69725d46443074ab10e1a28a22/Screen_Shot_2020_11_08_at_2_31_29_PM.png Two Consolidation Rounds Down, Two to Go! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/902277484 Zoe's back home after her second of four inpatient stays during this phase of chemo. Each time she's inpatient, the nurses, doctors, and child life specialists love to pop into her room for a quick visit. They love to say hi and share stories and jokes with Zoe even if they aren't assigned to her. Packard has become our home away from home, and we are so fortunate to have such an amazing team supporting our gal! Here's Zoe being shown how to hear her heartbeat with a stethoscope.]]> 2020-11-08 22:39:27 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/902277484 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/916498550 Our chickens really like to take dirt baths but they refuse to do it in the chicken run, so I made them a bath with sand in a giant tupperware container.  Belle LOVES to bathe in what I am now calling the Chicken Spa. Lots of love and hugs,
Sally]]> 2020-11-12 14:11:22 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/916498550 Zoe, Lots of good thoughts from Ohio 💕 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/927106950 That’s our new home across the lake.  We’ll be moving over Thanksgiving so we’re busy packing.  Ninja and Browncat like to play around the boxes.  We’ve been busy but thinking about you. Lots of 💗 love, Su-Pei, Alex, Ninja & Browncat ]]> 2020-11-16 13:54:29 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/927106950 Round 3! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/930185420 We’re back in the hospital in the corner room this time.  Lumbar Puncture in the morning at 8am followed by the next 24 hour high dosage of methotrexate.  I’ll be bringing over some boba tea tomorrow help keep her hydration up!  -Tom]]> 2020-11-17 04:46:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/930185420 Birthday LP jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/932296028 Get to spend my birthday with Zoe at Packard. Not the best night's sleep, but woke up to find out that Zoe is the first lumbar puncture of the day (which is GREAT news because she's not allowed to eat/drink beforehand), and one of our favorite nurses is Zoe's day nurse today (love her because she is super efficient and her goal is to get Zoe discharged ASAP!). It's the little things! :-)]]> 2020-11-17 15:46:33 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/932296028 Turtle drawing contest jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/939430842 Zoe challenged her medical team to a turtle drawing contest! Here are the turtles that were drawn by Zoe, the attending, resident, nurses, music therapist, and librarian. Can you guess which one is Zoe's?]]> 2020-11-19 01:04:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/939430842 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/941474952 Q: How do you get a squirrel to like you?

A: Act like a nut.

Love and hugs and hedgehogs,
Sally]]> 2020-11-19 14:31:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/941474952 LPCH staff is amazing jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/947159181 When Zoe organized the turtle drawing contest, she suggested that her primary attending oncologist, Dr. Norman Lacayo, act as the judge. He's an incredibly busy guy and doesn't usually attend rounds, but the onc team promised they'd ask him to stop by and judge. I warned Zoe that it wasn't very likely he would be able to come by because he was so busy, but Zoe had faith that he'd show up. And sure enough he did! At 7pm, he came rushing in, apologizing for being late, and said that turtle judging was the most important job of the day. He took the judging seriously, critiquing each turtle carefully, and then spent another 10 minutes discussing turtles with Zoe. As much gratitude as I have for the brilliant minds and innovative treatments offered at Packard, I am just as appreciative for these wonderful acts of kindness and generosity. Thank you, LPCH!]]> 2020-11-20 21:17:54 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/947159181 Zoe the Youtuber! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/953367265 We are back home and enjoying our time together before Zoe has to go back to the hospital for her next round of inpatient chemo next week. One funny story from last week's hospitalization has to do with Zoe's love of Harry Potter. There are these Youtube videos called Harry Potter in 99 Seconds that Zoe loves to watch and sing. Just before she went under anesthesia for her lumbar puncture, she was singing the Harry Potter song and the nurses were having fun dancing along! Even the anesthesiologist, who was a pretty serious guy, started singing along because he is also a Harry Potter fan! 

Zoe made her own Harry Potter in 99 Seconds video using her stuffies. She'd love to get lots of views and subscribers, so please check it out! 

https://www.youtube.com/watch?v=FSjiRA_EfD4]]> 2020-11-23 17:52:48 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/953367265 Cute characters for you! rumi22 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/957724729 Hi Zoe,
I hope that you are feeling better.  I drew these cute characters for you because they always make me smile.  And I hope they will make you smile too!! 
Love, Mira

]]> 2020-11-24 20:03:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/957724729 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/965884798 Q: What do you call a boomerang that won't come back?

A: A stick.

I hope you had a good Thanksgiving!  Lots of big hugs,
Sally]]> 2020-11-27 15:29:09 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/965884798 Sea Turtles! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/966554891 Hi Zoe, These sea turtles from one of Andy's dives are swimming by to say hi!
https://youtu.be/HlnBDAESfrk 
Hugs, Lynn and Andy xo]]> 2020-11-28 01:01:01 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/966554891 Hey Zoe- bert44 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/969269710 HP question time.  Can you answer these?
1. Name 3 professors at Hogwarts who are not Prfs Snape or McGonigle
2. Name 2 girls in Gryffindor who are not Hermione
3.  Name 3 classes at Hogwarts that are not Defense Against the Dark Arts

Keep up the fight!
Bert, Maria and Margot]]> 2020-11-29 20:18:15 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/969269710 Final round of Consolidation! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/974437183 After a relaxing Thanksgiving celebrated at home, we are back in the hospital for the fourth and final round of Consolidation Phase. Like the other times, they will kick things off with a lumbar puncture to administer chemo into her spinal fluid and then she'll get 24 hours of high-dose methotrexate in her port. This time, we have been placed in the stem cell transplant wing of the oncology floor. Because this unit houses the most vulnerable patients, the unit doors remain locked and only open once they have verified that our hands are thoroughly washed. Unfortunately, Zoe is also prohibited from leaving her room, which means no going for walks around the floor. The walks have helped to flush the chemo out of her system, so fingers crossed that we can still keep her active enough to be discharged by the end of the week!  ]]> 2020-12-01 05:30:04 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/974437183 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/985010160 I'm thinking good thoughts for your 4th round of Consolidation chemo.  Will you think good thoughts for my chicken, Spoon, who broke her beak and has to live in a shower stall for a little while?
Love, hugs, and magical healing,
Sally]]> 2020-12-03 18:20:07 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/985010160 Tough week, but we're home! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/989387912 I won't lie, this week has not been easy for Zoe or for her parents. Despite the challenges, there have been some positive moments worth highlighting:
1. First and foremost, Zoe has been discharged from the hospital! Even with a higher chemo dose, nausea and dehydration, and being cooped up in her room most of the time, she was still determined to get out by the end of the week...and she did! Way to go, Zoe!
2.  Zoe held another drawing competition and it was a great success! Will post pic later.
3. Zoe got to experience the oncology playroom for the first time! It's been closed because of covid, but they have opened it back up by appt only. Here she is in the playroom working on a music video with Emily the music therapist.]]> 2020-12-04 22:00:09 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/989387912 Harry Potter-themed drawing contest jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1000280470 For her last Consolidation Phase hospital stay, Zoe organized a Harry Potter-themed drawing contest. The hospital staff did not disappoint! See if you can spot the following: Harry, Hermione, Ron, Luna, Hagrid, Hedwig, Crookshanks, Scabbers, Sorting Hat, Nimbus 2000, Deathly Hallows, unicorn, snitch, Harry's scar, mandrake, Hogwarts Express platform, and butter beer. Zoe was the judge this time (and also the one who drew Luna), and declared that everyone was a winner!]]> 2020-12-08 22:15:38 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1000280470 Zoe! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1007690273 I'm so impressed you finished your 4th round of consolidation chemo so quickly! You are an inspiration.

If you decide to have a weird bug competition, I'd like to enter this one in your contest.  I saw it on a hike in the Santa Cruz Mountains this week.  It's a Jerusalem cricket.
Hugs,
Sally]]> 2020-12-10 19:26:38 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1007690273 Just Keep Swimming jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1012635239 The oncology team knows that Zoe's been having a hard time with all her meds lately. So at her recent check-up, the oncology fellow surprised Zoe with a Dory stuffie along with the following message: "When days are hard, just remember - just keep swimming!" It brought a big smile to Zoe's face!]]> 2020-12-12 19:17:14 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1012635239 You're doing great Zoe! More HP quiz questions for you: bert44 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1021823440 1. You know the four houses of the Hogwarts School.  What are the first names of the founders?
2.  Name three Death Eaters who are not Lucius Malfoy.
3.  Name three establishments located at Diagon Alley.

Margot, Maria and Bert]]> 2020-12-15 20:24:59 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1021823440 Yay Zoe! rumi22 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1025452519 Hi Zoe, We are thinking about you and so impressed by your resilience.  Seeing pictures of your smiling face always makes me smile.  I found this picture on my phone from Dec 16th 2015 & I wanted to share it.  Sending you big hugs & lots of love!
-Rumi & Mira]]> 2020-12-16 19:29:13 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1025452519 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1028279817 I hope you're feeling better this week.

Q: Can a kangaroo jump higher than the Empire State Building?

A: Of course!  The Empire State Building can't jump.

Big hugs and lots of love,
Sally]]> 2020-12-17 16:10:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1028279817 Dr. Wang jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1033990343 Zoe's in the next phase of her treatment, which involves 5 days of nelarabine infusions (a chemo drug that was recently found to help reduce risk of relapse in T-cell ALL) followed by a combo infusion of cytarabine and cyclophosphamide. Before starting this next round, she got to say hi to her favorite doctor. Dr. Wang is a first year oncology fellow, and Zoe was her very first patient. The two have a special bond fueled by their mutual love of Harry Potter, corny jokes, and boba tea!]]> 2020-12-20 05:37:21 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1033990343 Zoe Sighting https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1036606670 Zoe it was great to see you and say hi on your mom's Zoom call!  Here's Tule and Ellie in the snow.
- Mara

]]> 2020-12-21 18:52:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1036606670 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1041502612 I just made a reservation for us to go camping in Half Moon Bay in June.  I missed our camping trip so much this summer.  Here's a pic from the last one, I bet you're a lot taller now.
Love,
Sally]]> 2020-12-24 19:42:53 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1041502612 Happy Holidays Zoe!! mstevenson10 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1042060173 Wishing you and your family a lovely holiday and a happy New Year! Hershel really wanted to show you his shiny new necklace that he received for Christmas! He is feeling very stylish. 
Love, Ms. Stevenson and Hershel!]]> 2020-12-26 00:14:19 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1042060173 HI Zoe kararacicot https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1043366044 hope you're feeling better, hope you had a great Christmas, we miss you, hope you can visit us sometime. and see you on messenger.

love, Zoe R and Kara

]]> 2020-12-28 00:28:24 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1043366044 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1047711854 Happy New Year!  Here's a little video of my chickens, just hanging out in the yard being chickens.  I find it relaxing to watch them.
Love and hugs, 
Sally]]> 2020-12-31 15:47:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1047711854 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1062956078 I hope you're feeling good this week.  I have a joke for you:

Q: What did the zero say to the eight?

A: Nice belt.

Big hugs,
Sally

]]> 2021-01-07 13:15:25 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1062956078 Continuation phase has started! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1065640890 Happy New Year! We have now moved on to the final phase of chemo! Granted, it's 120 WEEKS LONG, but it's still something worth celebrating! We're spending the day at Packard getting a triple dose of chemo: vincristine, doxorubicin, and pegasparagase infusions followed by daily oral mercaptopurine and dexamethasone at home. She hasn't had some of these meds since her first month of induction, so she is being closely monitored for any bad reactions. So far seems to be handling it well! For the big day, she decided to bring a gift from Santa, a "Harry Otter" stuffie! ]]> 2021-01-08 00:46:33 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1065640890 Hi Zoe, bert44 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1080684567 You are doing so well we decided you need MORE challenges in your life just now.  So here is the next round of HP questions:

1.  In The Half-Blood Prince,  in what pub does Prof Slughorn meet Harry, Hermione and Ron?
2.  What town is the pub in?
3.  Name another establishment in that town.
4.  How does Prof Slughorn address Ron when he happens upon the group?
Best wishes,
Margot, Maria and Bert]]> 2021-01-12 20:49:38 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1080684567 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1087328169 Another joke for you:

Q: What's black and white, and black and white, and black and white?

A: A penguin rolling down a hill.

I know you had a rough week, I hope you're feeling better.
Hugs,
Sally

]]> 2021-01-14 14:31:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1087328169 Another bad joke! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1092401840 Hi Zoe, 
What do you call an alligator in a vest?
An investigator!

Many hugs, 
Lynn and Andy]]> 2021-01-15 18:24:42 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1092401840 Glad to see you’re in your final phase of treatment! Lots of love 💕 Alex, Su-Pei, Ninja & Browncat https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1094275083 2021-01-16 18:48:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1094275083 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1110427083 I like to grow orchids and this one that's blooming right now has crazy flowers - orange with pink hairs.
Hugs, 
Sally 

]]> 2021-01-21 15:11:12 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1110427083 2 weeks down, 118 weeks to go! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1112009185 It was a rough start to continuation phase; her last infusion put her out of commission for about 5 days. The doctors gave her a little chemo break (no oral meds for 3 days, which was a huge relief for all of us!) and now we are back at the hospital for her next chemo infusion. Unfortunately, her blood counts are very low, so they have delayed her lumbar puncture (which is how they get chemo into her brain and spine). She's still able to get her chemo infusion through her port, so we're hanging out at the hospital until the infusion is complete. Had to wake up early to get to Packard by 7am, so Zoe's taking a nap with her buddy, Gabe. Hoping to get out of here by 3pm! ]]> 2021-01-21 20:37:09 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1112009185 Hedgehogs rumi22 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1112506942 Hi Zoe,
I hope that you are feeling a little better.  Did you know that Feb 2nd is National Hedgehog Day?? Below I found a really cute picture of a hedgehog that I think you will love.  
Hugs,
Mira]]> 2021-01-22 00:34:07 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1112506942 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1137691625 Simon's turtle Daisy has been spending a lot of time bathing under her heat lamp lately.  She looks very relaxed when she does this. I don't know how she decides which legs to keep out and which ones to keep in her shell.
Hugs,
Sally

]]> 2021-01-28 17:45:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1137691625 Continuation Week 4 thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1144246878 Zoe and I (Tom) went to the hospital for the week 4 treatments .  She wasn’t too thrilled about being woken up at 6am to get ready but at least she wouldn’t have to wait as long to eat.  One time a while ago, her LP kept on getting delayed and she couldn’t eat until almost the end of the day!  It was all over by about 9:30am and after that I was tasked with getting some non-cafeteria food for lunch— this time at the Melt over at the Stanford Shopping Center.  Here she is enjoying her mac and cheese sandwich melt.    We moved to the “fast pod” area where she just sat while she got her infusions of Doxorubicin and Vincristine and we were able to head home by about 1:30.  Not too bad.  

The next photo is of her with the infusions.  The dosages are a lot lower than when she was in remission induction back in August. ]]> 2021-01-30 22:25:07 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1144246878 Mario Run and Infusions thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1144247333 You might be able to tell that her hair is growing in more.  However with the infusions of doxorubicin and others starting up again, it is starting to fall out again.  She’ll probably start growing her hair back in earnest in the latter half of this year.  ]]> 2021-01-30 22:25:44 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1144247333 Feb 6 is Zoe's birthday! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1154766736 This last round of chemo hit Zoe really hard and she's been out of it for the past five days. We are hoping she perks up in time to celebrate her 9th birthday on February 6th. We are keeping things low key and would love it if you could post some birthday wishes on the padlet. She loves reading these posts, and even if she can't always respond, they always brighten her mood! (Pic from last year's birthday celebration in Tahoe)]]> 2021-02-02 17:02:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1154766736 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1163789037 I got to go for a hike in the rain this week and I saw one of my favorite redwood forest critters: the California newt.  They look like this, but I didn't take this pic.
I hope you're feeling better.
Hugs,
Sally

]]> 2021-02-04 14:07:48 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1163789037 Hedgehog https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1164873582 Hi Zoe! I heard you like hedgehogs, so we also got one! 
Just kidding haha.  Google hedgehog, click “view in 3D” and “view in your space” and it shows you a hedgehog!  You can also see other animals like grizzly bear, lion, tiger, panda, various types of dogs etc.  It’s amazing to see how big a grizzly bear looks in your room!  
- Sierra, Jiye and Wonyoung]]> 2021-02-04 17:05:41 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1164873582 Happy Birthday Zoe! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1170871949 The Stephenson 5 are wishing you are very happy 9th birthday! 
Paul, Nancy, Luke, Isaac, and Sam

]]> 2021-02-06 05:07:53 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1170871949 HAPPY BIRTHDAY ZOE! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1171412134 Love and hugs and cake,
Sally

]]> 2021-02-06 13:59:44 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1171412134 Happy birthday kdklint https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1171793971 Happy 9th birthday Zoe! Have a wonderful day celebrating you.🎉🎊🎂
Krista and Kaia Nelson]]> 2021-02-06 17:49:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1171793971 HAPPY BIRTHDAY, ZOE! kararacicot https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1171981699 Happy Birthday, Zoe!! We miss you and love you so much! Matt, Kara, Noah, Ashton, Zoe, Lana, Golide, and Mochi :-)]]> 2021-02-06 19:55:27 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1171981699 Happy birthday!! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172156225 This is our third take of the song -- once we finished, Kogen said, "I think we sound very good and should form a family choir."
What do you think, Zoe? I think we should all keep our day jobs...
Happy birthday, Zoe! We all love you very much.
~Kogen, Miles, Waka, Tai, and Leo]]> 2021-02-06 22:27:02 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172156225 Happy Birthday Zoe!!! rumi22 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172217400 I can't believe that you are 9 already!  When I first met you, you were only about 5 months old (as was Mira).  And sometimes my brain can hardly believe that you girls are 9.  How did that happen so quickly??  I hope that you are having a magical birthday today filled with lots of love and sweet treats!  We send you giant hugs and so much love.  
Love, Rumi & Mira
PS. Mira keeps reminding me that next year you girls will be 10!!  What???]]> 2021-02-06 23:43:02 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172217400 Happy Birthday, Zoe!! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172226113 Wish you many many happy return of the day!! We hope you are having wonderful day of celebrations.

~Tejaswini and Sampda
 
Silly joke:
Why does king have to go to dentist?
.
.
To get his teeth crowned!!
]]> 2021-02-06 23:55:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172226113 Happy 🥳 🎉 Birthday! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172388821 Wish you have fun birthday. Peter]]> 2021-02-07 03:53:08 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172388821 Niko says Happy Birthday, too https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172433619 Niko had a play date today with his buddy so I put together a little movie of their shenanigans. I hope they make you laugh! They both like to play crazy!]]> 2021-02-07 04:32:58 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1172433619 Zoe is 9! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1174779563 THANK YOU to everyone that posted, texted, called, and dropped by to wish Zoe a happy birthday! She was so happy to feel the birthday love. It was an amazing day!]]> 2021-02-08 01:34:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1174779563 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1181842560 I went backpacking in the Los Altos Hills Sunday night and saw this coyote in quite a hurry to get somewhere at sunset.
Love and hugs,
Sally]]> 2021-02-09 12:55:00 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1181842560 Happy Lunar New Year mfevitt https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1198491693 Hi Zoe. I remember when you and your mom shared Korean New Year traditions at preschool. Here are some photos. Your dress was so fancy! LOVE, Teacher Marie]]> 2021-02-12 22:42:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1198491693 Another Lunar New Year Photo mfevitt https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1198500665 Hi again Zoe! Here's another preschool photo from so long ago. Teacher Marie]]> 2021-02-12 22:48:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1198500665 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1207917103 Q: Why did the kid cross the playground?

A: To get to the other slide!

Happy Tuesday,
Sally]]> 2021-02-16 17:28:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1207917103 Hi Zoe, bert44 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1213378128 Spring is on its way.  That means, more HP questions for you.  
Who said the following?
- "Merlin's beard!"
- "I shouldn't have said that."
- "Zip it, Mundungus!"
- "Who are you? ... and, who am I?"
You're doing great.  Best wishes,
Margot, Maria and Bert

]]> 2021-02-18 00:25:54 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1213378128 Family Show https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1216221698 Hi Zoe! wanted to recommend Crazy Delicious on Netflix. It is a fun cooking show set in a woodland wonderland. Most episodes an adorable hedgehog or bunny makes an appearance as well!
Nancy]]> 2021-02-18 17:28:41 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1216221698 Reinduction Part 1 jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1216224387 After a relaxing week of no chemo, we are back at the hospital to start the next part of treatment known as Reinduction (aka Delayed Intensification). We've been bracing ourselves for weeks because we've been told this is one of the hardest parts of treatment. It starts today with a lumbar puncture and big chemo infusion that is similar to what they gave her when she was first diagnosed. It will be 3 weeks of intense chemo, then one month break, followed by another 3 weeks (reinduction part 2). Today is also the day for her prognostic MRD (minimal residual disease) where they will check to see how much cancer is in her body. We are really hoping for NED (no evidence of disease) so that she can just stay the course with her treatment plan. Please keep Zoe in your thoughts and prayers! (Pic of Zoe with her new stuffie, Pandy, getting prepped for LP)]]> 2021-02-18 17:29:17 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1216224387 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1231860506 I saw this crazy plant on a hike last week.  It smells like chemicals, looks like flies might pollinate it, and has the Harry Potter-worthy name of Fetid Adder's Tongue!  
I hope your reinduction is going well and you're feeling good. 
Sally]]> 2021-02-23 15:13:28 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1231860506 Reinduction I, week 1 and 2 thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1243754334 Today is the start of Week 2 of the three weeks of the first Reinduction.  I (Tom) took Zoe to the hospital this morning for her blood draw and Vincristine infusion and things went pretty smoothly.  No problem with blood counts and Zoe was in a good mood.  I was pretty happy about that.  It's been a challenge since she has been back on steroid pulses.  After today (actually after tomorrow morning), she has a break from chemo until her Peg and Vincristine infusions on Thursday next week.  

For this reinduction, she goes in twice a week -- once for the infusion and once to check her counts.  On the day before yesterday (Tuesday), Jen took Zoe for the routine blood draw and as they were getting close to the hospital she started feeling woozy.   She had to bring Zoe in on a wheelchair and as they were entering the hospital she started throwing up and needing to go to the bathroom.  Nausea is a COVID symptom so they wouldn't let her in right away no matter how much they pleaded.  The security guy put her in a side room to wait for the nurses to come and confirm it wasn't COVID while she continued to throw up.  Traumatic as it was, they got her in and got her hydrated with a bolus of saline solution and Aloxi for her nausea while she slept on the couch in one of the rooms.  She perked up by the time she got home and was much better after that.  Here is a pic of her sleeping after the ordeal on Tuesday.  

For the most part, she has been responding well to the treatment but we are sometimes reminded that things will not always go as planned.  

- Tom]]> 2021-02-26 00:41:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1243754334 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1253468894 I hope things are going better than last week!  Here's a joke for you:

What do you call a dinosaur with an extensive vocabulary?

A thesaurus.

Love,
Sally]]> 2021-03-01 14:57:12 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1253468894 Monday Transfusion thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1256089085 Today, we got to see Dr. Lacayo for the first time in a while as he was on a sabbatical.  Zoe showed one of her food drawing creations and introduced her to her latest stuffy, Rocky the Rock.  

We found out her hemoglobin was very low which seems to explain a lot of what has happened recently with her feinting and throwing up.  So we ended today with a blood transfusion which is the first she's had in a few months.  This should help a lot with her lack of energy.

]]> 2021-03-02 01:03:57 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1256089085 Zoe's Sandwich picture thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1256108378 Food is her favorite subject.]]> 2021-03-02 01:11:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1256108378 Hi Zoe, lynnnewman https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1279944978 Here's some turtles hoping to see you  soon -
https://youtu.be/jNQGzlYwGwI

Sending lots of love and good thoughts - 
Lynn and Andy]]> 2021-03-08 02:06:30 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1279944978 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1287230653 I hope the transfusion is helping you feel better.  Did you know that chickens like to sunbathe?  Me neither, but here they are.

Lots of hugs and health,
Sally]]> 2021-03-09 13:00:55 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1287230653 Reinduction 1 is done! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1301120044 Another rough week for Zoe, but the good news is that Reinduction 1 is over! Good riddance! Now she gets about a month "break" (not really a break, in that she still gets chemo, but it's spaced out a little instead of a huge dose of everything all at once). This will hopefully give her body a chance to recover and get stronger before she goes into Reinduction 2 in late April. Her transfusion last week definitely perked up her blood counts, which was great news. However, she has been experiencing some neuropathy and muscle weakness, especially in her legs, so we had to use a wheelchair to get to her clinic appointment today. Here she is riding the elevator with her newest buddy, a mini sloth stuffie named Mossito, which she earned after completing her reward chart for taking all her "ewws" (that's what she calls all the oral meds she has to take). ]]> 2021-03-12 02:41:22 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1301120044 Latest Drawing thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1304137000 Here is her latest drawing which she did on Thursday.  It has become a form of art therapy for her as she deals with all these hospital visits.  Fortunately, having a break from her steroids should be helpful over the next few weeks — they take a heavy emotional toll on her. -Tom



]]> 2021-03-12 19:57:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1304137000 Friday hospital visit thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1305549946 Being on these dexamethasone steroid pulses has caused her to have severe mood swings where she experiences extreme anger and extreme sadness throughout the day.  She never dealt with this with the prednisone she took during the induction phase when she was first diagnosed.  Dr Wang prescribed hydrocortisone this time around and that seems to have helped somewhat.  

Her last dex pill was Thursday morning as we exited the  Reinduction I phase but she has started to experience pain in her legs as her body was going through steroid withdrawal.  With Tylenol not really helping, we called the hospital and they told us to come in. Zoe was NOT happy -- this would be the third time at the hospital this week.  Both Jen and I drove with her while she was crying nonstop and I brought her into the Bass center. The NP prescribed something much stronger and we eventually headed home with her feeling a lot better. 

She woke up Saturday with the pain again and we gave her the meds again.  Hopefully this is not something we have to do after every dex pulse.  She has 5 days of dex every five weeks for the next year or so but from everything Jen has read, things should get better after Reinduction II in April.  😞 -Tom ]]> 2021-03-13 16:07:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1305549946 More problems, more meds jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1313903410 Well, the hits just keep on coming. Now we've found out that one of the chemo meds, Pegasparagase, has caused very elevated triglycerides (normal is less than 145, hers is over 2000) so she is at risk for pancreatitis. They've given another med to counteract the effects so hopefully we'll see improvements soon. She is also neutropenic (very low white blood cells), so she is on a chemo hold until her immune system improves. But the good news is that her pain is getting better, so we are going to try and wean her off the oxycontin.  The other bright spot is that all the waiting around at the hospital has given her a chance to get a lot of reading time. These days she is simultaneously working her way through both the Bravelands and Percy Jackson series!]]> 2021-03-16 04:53:04 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1313903410 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1315897957 Q: What do you get when you cross a giraffe and a hedgehog?

A: A fifteen foot toothbrush.

I hope you're feeling better.
Love, 
Sally]]> 2021-03-16 14:27:29 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1315897957 Leprechaun Trap thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1338685572 Zoe presented her essay on her leprechaun trap this morning.  ]]> 2021-03-22 15:54:08 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1338685572 Inside of the Leprechaun Trap thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1338688182 2021-03-22 15:54:35 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1338688182 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1343178152 I rode my bike by the Crystal Springs reservoir and stopped to take this picture of the California Poppies.  
Hugs,
Sally]]> 2021-03-23 14:31:27 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1343178152 Another Day, Another Transfusion thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1350048303 We thought that today would be a relatively quick visit to the hospital but it turns out that her hemoglobin was low once again and we had to stay for a few more hours for a blood transfusion but I think this will help with her energy.  At least the WBC and Neutrophil counts were good enough for her to move forward with the LP tomorrow.   Here she is in a good mood and reading her Bravelands book #5 as usual while we were waiting for the blood to arrive. -Tom 3/24/21]]> 2021-03-24 20:37:51 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1350048303 Zoe counts to 78 and saves a bird! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1355320400 Zoe had her lumbar puncture this morning and it went smoothly. She likes to see how far she can count before she goes under, and this time she made it to 78...a new record!  But to be fair, it doesn't really count; the anesthesiologist admitted that he slowed down the anesthesia infusion because he was secretly rooting for her to get a high number (I think I've mentioned before that anesthesiologists love her!). When we got home, Zoe spotted a cat attacking a tiny mourning dove in our front yard and shoo'ed it away. Poor bird was injured and unable to fly, but at least it was still alive so we put it in a box and then brought it over to the Wildlife Center of Silicon Valley, which cares for injured animals and then releases them back into the wild. Zoe the Bird Rescuer! (3/25/21)]]> 2021-03-25 23:40:32 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1355320400 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1368108280 Q: What do you get when you cross a snowman and a vampire?

A: Frostbite!

I hope you're feeling good this week. 
Love and hugs,
Sally

]]> 2021-03-30 14:07:38 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1368108280 Just Peg today thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1376424381 Zoe and I arrived at the hospital this morning to get her blood checked and fortunately her triglycerides were low enough move forward with her Pegasperagase infusion.  Two weeks ago she had to skip her Doxyrubicin and Peg infusions because her triglycerides were >2000 and her cholesterol was > 500 but the Lipitor she's been taking now seems to have brought it back down to reasonable levels finally.  Unfortunately, she's neutropenic again so we will have to pause her nightly 6MP pills again.  
Here, she is finishing book 5 of Bravelands as she starts her infusion.  I'm hoping we'll be able to get out of here by 2pm.  - Tom (4/1/21)]]> 2021-04-01 18:42:52 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1376424381 kdklint https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1377546911 Saw this and thought of you.
-Krista]]> 2021-04-02 05:29:19 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1377546911 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1388370416 We take our four chickens out of their coop for about an hour every day.  Yesterday I took them out and did some gardening while they explored the yard.  When it was time to put them back inside, I could only find three chickens.  I walked all around the yard, calling "Kazoo" and searching.  Only three chickens.  I went out to the road, even though they've never been out there.  No Kazoo.  By now I was really nervous that I'd lost one of Simon's pets.  And then it occurred to me: maybe she's laying her egg inside the coop.  And she was. Whew! Here's a picture of the eggs our chickens lay;  Kazoo lays the pretty green ones.
Hugs,
Sally]]> 2021-04-06 17:43:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1388370416 1/4 of the way through! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1396958554 It has been 8 months since Zoe was diagnosed back in August, and as of today we are officially a quarter of the way done with treatment! It is amazing to think how far we've come and also how much more we have left to go. Zoe's been on a chemo hold for the past week because her counts have been too low, but the good news is that she's been in a great mood and able to walk around and be active again. All that's about to change because her counts are good enough to restart chemo. Today she will get an infusion of doxorubicin and vincristine, and then she will take 6mp, dexamethasone, hydrocortisone, Septra, and Lipitor at home. She hates all the pills, so we motivate her with a reward chart. When it's filled up, she gets to pick out a reward. Lately, she's been obsessed with Little Reals Shopkins toys. Here she is proudly displaying all her Shopkins. When she starts struggling again from the chemo, I'll need to remember these moments when she is smiling and energetic to keep me going! -Jen 4/8/21]]> 2021-04-08 17:27:32 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1396958554 Every week is a little bit different thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1408382756 It's Monday, April 12, and after coming back from her Dox and Vin infusions on Thursday, Zoe has been doing a bit better than we expected which is a relief.  Getting back on the Dex has only brought on very intermittent bouts of sadness and irritability.  Most of Friday morning was spent with me going back and forth between an interview candidate group video meeting and helping Zoe with dealing with feeling nausea and throwing up a lot but afterwards she has been doing pretty well.  We have blue emesis bags distributed at various places throughout the house and cars to quickly grab whenever these things happen but she has been pretty good about giving us a bit of warning .  Tuesday morning is the last dose of Dex before Reinduction 2 on April 29 so it will be a nice break just in time for her to enjoy some time with my parents who are coming up from Pasadena later that day.  - Tom]]> 2021-04-12 16:55:03 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1408382756 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1412963472 Q: What do you call a fake noodle?

A: An impasta.

Chicken hugs to you, especially from Kazoo because she's the softest.
Love,
Sally]]> 2021-04-13 16:58:20 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1412963472 Hi again, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1414249885 My brother just sent me a hedgehog picture and I thought of you.
Love,
Sally

]]> 2021-04-13 23:12:03 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1414249885 Grandparents visit! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1430552437 It was spring break for the kids, so now that Tom's parents are fully vaccinated, they were able to drive up from Pasadena for a visit! The kids were SO happy to see their A-gong and Obaachan after these many months! Unfortunately, during their visit, Zoe ended up being admitted to the hospital because her doctors noticed that she was having some heart issues and did not look well during her scheduled infusion, and feared that she might have an infection. Zoe was devastated when she thought she wouldn't be able to see her grandparents (because of covid, hospital will only allow parents). Thankfully, the problems resolved fairly quickly so her doctors felt it was more a reaction to her immunoglobulin infusion than an infection and allowed her to be discharged after a few days. So, despite the stress of being hospitalized, the kids had a great spring break, thanks to their A-gong and Obaachan! (4/18/21)]]> 2021-04-18 20:18:45 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1430552437 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1437997810 I'm back with ANOTHER adorable hedgehog. I hope you're feeling better this week.
Hugs,
Sally]]> 2021-04-20 14:05:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1437997810 Hi Zoe, lynnnewman https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1444799885 Q. Why did the tomato blush?

A. Because it saw the salad dressing - 

Love and hugs, 
Lynn and Andy]]> 2021-04-21 22:46:07 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1444799885 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1464506834 Would you like another cuter-than-cute hedgehog photo?  I know you would.  Me too.

Love, 
Sally]]> 2021-04-27 14:18:48 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1464506834 Starting Reinduction II thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1475526259 4/29/21
Today is the first day of week 17 which is Reinduction II.  The LP went smoothly as usual and she’ll be getting her vincristine and Pegaspargase infusions this afternoon.  Tuna Niçoise salad from Tender Greens for lunch! -Tom

]]> 2021-04-29 19:12:27 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1475526259 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1492073494 I can't believe you're all the way to Reinduction II, you're making so much progress!  
We have a new nickname for Kazoo: Snugglebucket.
Love and hugs,
Sally]]> 2021-05-05 00:07:01 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1492073494 Reinduction II, Week 2 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1504350681 5/7/21
Second week of Reinduction II and so far it hasn't been too bad (fingers crossed, knock on wood!). Her previous mood swings on dexamethasone were indescribably awful so this time the doctors  prescribed an anti-psychotic medicine for her to take while on steroids. It's scary to think that she is bordering on "psychotic" but we were desperate to try anything at this point. Thankfully, after taking it for a week, I am feeling cautiously optimistic that it might be working! This past week, we also spoke with Zoe's principal, teacher, school nurse, and district psychologist to get Zoe on a 504 plan and assessed for special education in anticipation of going back to school in person next year. It will definitely be challenging and will require a lot of coordination and communication with the school. But she REALLY wants to go back to in-person school and her oncologists think it will probably be possible (though maybe not right at the beginning of the school year), so we will do everything we can to make that possible! (Picture of Zoe with the sign she made for teacher appreciation week) ]]> 2021-05-08 00:06:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1504350681 Hedgehog of Oz rumi22 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1505492103 Hi Zoe,
We love seeing your smiling face in pictures.  Glad to hear that this next phase of treatment has been okay so far.  Mira read this book that she wanted to tell you about.  It was called "The Hedgehog of Oz".  It was about a hedgehog name Marcel finding his way home.  It was really cute (we both read it!).  I thought you might like it.  
Love & hugs,
Rumi & Mira]]> 2021-05-08 20:47:47 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1505492103 Another overnight stay thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1512029345 5/10/21
Zoe and I came into day hospital today figuring things would be pretty routine and for the most part it was.  No chemo today but there were the usual blood tests that are done once or twice a week.  She also had a PT assessment as part of the Total 17 protocol and that was pretty uneventful.   It was just few tests of her coordination in case there was a concern of her not being able to walk properly.  I grabbed a few pics of her doing some of the simple tests.
The problem today came when her heart rate wouldn't stay down in the normal region.  It was high (150bpm) at the beginning and bounce around never seeming to go below 120bpm and there was no clear explanation why as her hemoglobin was ok and a normal fluid bolus didn't help and an EKG looked normal.  One theory was that this is happening because her olanzapine and dexamethasone stopped on Friday morning and this is a withdrawal symptom.  In any case, because of the uncertainty, Dr Lacayo decided to be cautious and get her admitted to the hospital overnight for observation.  Jen is staying the night with her.  I'm sure it's fine but she is going to be admitted to the hospital on Thursday morning for her high-dose cytarabine infusions, so it's turning into a busy week.  - Tom

]]> 2021-05-11 04:05:24 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1512029345 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1514199223 How do you feel about the word "shrubpig"?  This is what Brian has always called hedgehogs.  Here's another hedgehog/shrubpig pic for you.
Love and hugs,
Sally]]> 2021-05-11 16:33:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1514199223 Cats Rule, Dogs Drool https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1516136604 This is Trooper the cat showing Tule and Ellie the dogs who is really boss of the house. 
Sending the best thoughts to you!
Mara and the critters.

]]> 2021-05-12 03:16:15 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1516136604 Starting the Last week of Induction thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1521939647 5/13/21
Today is Thursday and Jen and Zoe went headed to the hospital this morning so she can be admitted.  This will be the first day of the last week of Reinduction II and she'll be starting the first of her 4 doses of high-dose cytarabine today followed by the next one every 12 hours.  She'll get an infusion of vincristine today as well but I think they'll be skipping yet another pegaspargase infusion because her triglycerides are way too high again.  

After she as admitted on Monday, Zoe actually ended up staying two nights in the hospital even though in general she felt ok with no infections.  Her heart rate finally went down a little bit on Wednesday morning and although it was still elevated (120bpm) they decided to discharge her.  At least she was able to spend last night in her own bed before going back to the hospital today!

]]> 2021-05-13 17:15:51 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1521939647 Back in the hospital thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1521982871 The latest book she is reading is Survivors: Darkness Falls.

https://warriorcats.com/survivors/books

]]> 2021-05-13 17:25:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1521982871 Sophie's Place https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1526612122 5/14/21
Being in a hospital can be a pretty boring and isolating place, especially when you end up in the Stem Cell Transplant wing where you are not allowed to leave your room (to protect the transplant patients with zero immune system). But Packard Hospital tries to offer some fun activities to keep the kids entertained. Today, Zoe got to participate in Sophie's Place, which is Packard's in-house broadcast studio. They provide a a closed circuit channel with programming offered several times a day. Today that had their call-in trivia game and Zoe was one of the participants that dialed in and answered one of the trivia questions correctly (it was about the Disney movie Raya). As a reward, she got a VIP pass and toy prize! It was so great to see the big smile on her face when she got to go on air and then when they came over to deliver her prize!]]> 2021-05-15 02:25:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1526612122 Mural Wish thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1534651495 5/18/21
There is an organization that is providing murals for kids that are critically ill.   MuralWish was started by Irene (in the photo below with Zoe) who has done a number of children's book illustrations. She's a wonderful artist and worked with Zoe on an underwater themed wall mural.  This will be only the second mural she's done for through her organization and it will be painted in the coming weeks. Zoe is very excited!

After designing it, Zoe had to wait to get through this last reinduction phase.  After being admitted on Thursday, Zoe was able to be discharged on the following Saturday without too much of a problem.  The high-dose cytarabine infusions she had went smoothly without any fevers and she was able to get her vincristine and pegaspergase infusions as well.  
Today, Jen took Zoe to the hospital for a follow-up appointment and Zoe was a bit tired and I think that the doctors were a little worried that there might be issues from the infusions and almost admitted her yet again.  Fortunately, that didn't happen and she was in good spirits for the rest of the day although she was still pretty tired. 
Starting this coming Thursday, she'll have a week-long break from the chemo but we are anticipating that the cytarabine should be making her white blood cell count completely tank in the next week or so we'll have to be careful.  - Tom ]]> 2021-05-18 07:51:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1534651495 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1535841025 Q: Where did the spaghetti go to dance?

A: The meat ball.

I hope you can relax on your chemo break that starts in a couple of days.
Love and hugs, 
Sally
ps. Snugglebucket is at it again.]]> 2021-05-18 14:31:56 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1535841025 "When I go home..." https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1545696657 5/20/21
Because of last week's hospital admission and her almost hospital admission this Monday, Zoe spent a lot of today's clinic visit dropping subtle and not-so-subtle hints that she did NOT want to get admitted to the hospital. Every other sentence was like, "When you're done checking me out and I GET TO GO HOME, I will eat a yummy lunch IN THE COMFORT OF MY HOME." Fortunately, the doctors decided that Zoe looked good and could indeed go home. Unfortunately, they also found yet another thing for us to be concerned about. This time, it is persistent elevated blood glucose levels and glucose in her urine. This means we get to add endocrinology to the growing list of appointments in the calendar. The oncs also noted that her blood counts have indeed crashed as anticipated, so we will need to be extra vigilant and add more antibiotics and anti-fungals to her med list.

Below is a pic of Zoe waiting to get her port de-accessed. We recently received these cool medical shirts from Luke's Fastbreaks, which have snaps all along the edges for easy access. We had tried other port access shirts but Zoe never liked them because the zippers would irritate the skin stretched over her port. So glad to finally find a shirt that works for her!]]> 2021-05-20 21:28:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1545696657 Pixar lesson thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1551867139 5/22/21,On Saturday Zoe had a great time participating in an art lesson on Zoom led by an animator named Rej Bourdages who is a story artist for Pixar.  Zoe and a few other kids from Make-A-Wish that had an interest in drawing and she had a great time learning out to draw characters like 22 from Soul as well as Woody from Toy Story and Stitch from Lilo and Stitch.  Rej was part of the recent Pixar movie, Soul, as well as the upcoming movie, Luca.
Maybe post Covid, we might be able to get a tour of the studio! -Tom]]> 2021-05-23 22:05:13 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1551867139 Sunday in the ER thomasli3 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1551874519 5/23/21.  On Sunday morning, Zoe had a issue with peeing and, as a precaution, the doctor had her come to the pediatric emergency room at Stanford at around 10am.  Her peeing ended up looking like it was ok and she didn’t have an infection but after taking her CBC, it turned out that her platelets were super low (6k/uL where >150k is normal).  That explained the non-stop bloody nose she had today while we were driving to the ER.  Right now it’s already 3pm and we’re still waiting for the platelets to come for a platelet transfusion so I’m going to guess we won’t be out of here until 5 or 6pm.  At least she doesn’t have to be admitted! -Tom


]]> 2021-05-23 22:14:47 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1551874519 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1553943367 Zoe, The first peony from my garden to brighten your day. ❤️Su-Pei]]> 2021-05-24 14:46:21 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1553943367 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1559142363 The hens like to forage for bugs under the shrubs, but sometimes it seems like they're playing hide and seek.  Cello popped out of this bush right under my nose and I'd had no idea she was there!
Hugs,
Sally

]]> 2021-05-25 19:55:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1559142363 Summer Scamper! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1560073214 A colleague, friend, and all-around awesome person is raising money for Summer Scamper, a fundraising walk/run race that benefits Stanford's Packard Children's Hospital. I was so touched when she said she wanted to raise funds for the Bass Center for Childhood Cancer and Blood Diseases, which is where Zoe gets treated. Zoe was super excited to find out about Summer Scamper and even more excited that she got to come up with the team name! She instantly chose "Team Noodles" in honor of her favorite food! If you are interested in participating or donating, please check out the Team Noodles page: https://my.supportlpch.org/team/355400]]> 2021-05-26 03:14:12 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1560073214 Hospitalized again jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1564060284 5/26/21
We are back at the hospital. Zoe wasn't feeling very well this morning and ended up sleeping most of the day. By afternoon she had a fever of 100.4. Any temp over 100.3 while neutropenic requires a trip to the ER because the risk of sepsis is high. By the time we got to Packard, her temp was up to 102. She was admitted and tested positive for bacterial infection, so she'll be staying in the hospital until the infection clears and her temp goes down.]]> 2021-05-27 05:36:06 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1564060284 Getting better jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1577303661 6/1/21
Thank you to everyone who has sent their thoughts, prayers, and kind words of support. It's been a difficult week with a persistent high fever that remains a mystery despite numerous blood tests, cultures, MRI and CT scans. Without knowing the cause, they have been dousing Zoe with broad spectrum antibiotics and anti-fungal meds. Fortunately, it appears to be working because Zoe's fever finally seems to be going down! We don't want to say anything to jinx her progress, but it has been wonderful to see Zoe smiling again and acting more like her usual self. Today, she even got to enjoy some time with art therapy, one of her favorite activities!]]> 2021-06-01 18:36:27 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1577303661 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1577595352 I'm so glad to hear your fever is coming down. I'd like to celebrate by sharing a hedgehog photo.
Love and hugs,
Sally]]> 2021-06-01 20:39:45 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1577595352 Home! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1586594571 6/4/21
Zoe is home! She was discharged the other day after checking off the following boxes: fever-free for 24 hours, increasing white blood cell count, and negative blood cultures. It was such a relief to come home but then we had to go straight back to the hospital clinic for her next round of chemo. However, the doctors decided to hold off on the chemo because her counts are still on the low side, and they'd like to have a few more days of rest so that counts can fully recover. That was fine with me, because without the chemo she was able to have enough energy to attend the last day of school, which was today! I don't have any recent pics of her hospital discharge or last day of 3rd grade, so instead here's a pic of her first day of 3rd grade, which was one and a half weeks after she was diagnosed with leukemia and receiving her induction treatment in the hospital. We've come a long way!]]> 2021-06-05 03:22:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1586594571 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1591633272 I'm so glad you get to stay home for a bit. I got to visit a beautiful garden this week, and parts of it seemed like a fairy land.  My favorite flower was this dogwood.
Love and hugs,
Sally

]]> 2021-06-08 02:17:04 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1591633272 Mural Wish jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1597617481 6/9/21
Zoe has been doing pretty well this week. Her chemo for the week is nelarabine, for which she needs to go to the hospital to get an infusion every day this week. It takes about 3-4 hours each day, so it can be a bit draining. But at least we get to go home at the end of each day! 

Despite all the stress that May brought, one very cool thing that recently happened was that Zoe was approached by a non-profit org called Mural Wish, which provides murals for critically ill children. Thanks to Mural Wish, Zoe was able to get a beautiful mural in her bedroom! The muralist and founder of Mural Wish, Irene O'Callaghan, is a phenomenal artist and a beautiful soul who brought so much joy to Zoe and the whole family. If you'd like to learn more and donate, please go to her website (below). And if you'd like to follow Zoe's mural story, check out the Mural Wish Instagram (@muralwish), which includes pics of Zoe's amazing mural!]]> 2021-06-10 04:25:28 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1597617481 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1598843354 A noodle joke for you:

A stranger was judging me for buying a cart full of noodles.  I said "Don't judge me because udon know me."

Hugs,
Sally]]> 2021-06-10 15:17:24 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1598843354 Happy Summer! rumi22 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1613192441 Hi Zoe,
We hope that you have been feeling better this week.  How have your first couple weeks of summer vacation been?  Mira's last day was last week on the 9th.  We LOVE the pictures of the mural in your bedroom!!!  It looks AMAZING.  Mira also loves sea creatures is also thinking about becoming a marine biologist!  Mira wanted to recommend a book to you -- it's called A Whale of the Wild by Roseanne Parry.  She really enjoyed it.  Sending you lots of love & big hugs.
Love, Rumi & Mira]]> 2021-06-17 23:16:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1613192441 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1622385985 What's better than a picture of a hedgehog?  A picture of two hedgehogs. 
Love and hugs, Sally

]]> 2021-06-23 21:55:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1622385985 Zoe's Story on Mural Wish jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1623063805 6/23/21
When Mural Wish offered to paint a mural for Zoe, they asked if they could interview us and tell Zoe's story. The video was released today, and we are so proud of Zoe and how bravely she described her journey with leukemia. Check out the video, and please share with others. We want to help spread the word about this amazing organization that provides hope and joy to critically-ill children through beautiful art!
https://www.muralwish.org/murals

]]> 2021-06-24 05:53:06 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1623063805 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1630187584 It was so fun to go camping with you last week!  Here's one of my favorite pictures from the trip. I can't wait to go again next year.
Hugs,  Sally]]> 2021-06-29 14:25:06 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1630187584 Team Noodles jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1635372935 7/1/21
It's been a pretty low key past few weeks, as far as chemo goes, which is a great thing! Last week we were able to go on our annual Half Moon Bay camping trip with our preschool friends (10+ years and counting!). Zoe had a fantastic time, and though it ended with a trip to the hospital to take care of a tick bite and toe infection, she only has fond memories and keeps asking when we can go again!

Yesterday was the Summer Scamper, and it looks like Team Noodles raised $3,785! Thank you to my dear friend R.P. for fundraising! We turned Zoe's Team Noodles logo into a sticker and distributed to the staff at the Bass Center. They loved it, and we even had some nurses come into the room where Zoe was having her chemo infusion asking if they could have a sticker for their water bottles! Go Team Noodles!]]> 2021-07-02 23:28:58 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1635372935 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1637354927 I miss Half Moon Bay, so I was looking through pictures of early trips.  Here's a picture from a trip to HMB in 2015 - six years ago! 
I hope you're feeling good this week.
Love and hedgehogs,
Sally]]> 2021-07-05 13:46:43 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1637354927 Scampered https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1639621701 It was an honor to Scamper for you in the little seaside town of Corona del Mar.  Hopefully next year the Scamper will return to the Stanford campus and you can join me! ]]> 2021-07-07 02:23:22 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1639621701 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1649339898 I just saw this beautiful hummingbird mural in Burlington VT.  It was 15-20 feet tall.  I hope your underwater mural is making you smile every day.
Love, Sally   ]]> 2021-07-14 11:31:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1649339898 Fearless! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1654344874 7/18/21
Zoe only had oral chemo last week and didn't need to go into the hospital for any infusions, so we decided to celebrate by heading out to Great America! I was worried all the walking would be too tiring, but she handled it like a champ. I also thought we would only hang out in the Planet Snoopy (small kids) section but Zoe quickly got bored with those rides and demanded the adult roller coasters. She somehow convinced me to try Xtreme Skyflyer, which is the one where they hoist you up about 150 ft and then skydive/plunge to your death. I (Jen) screamed my head off the entire time whereas Zoe just had a huge grin and proclaimed, "That was AMAZING!" She's excited to try it again but I'll need at least a few years to recover!

This week we will be going to the hospital for daily nelarabine infusions Monday thru Friday. She gets a bit of a chemo break next week, so If all goes well and the doctors give their blessing, we're hoping to make a short trip to southern CA to see Tom's family. Fingers crossed!]]> 2021-07-19 04:30:19 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1654344874 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1655945590 In Vermont I saw these crazy creatures in a coffee shop.  They're human sized, and there are groups of them scattered all through the shop. Seeing them made me think I should spend more time making art, because I think someone had a lot of fun creating them.
Love and hugs,
Sally]]> 2021-07-20 13:21:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1655945590 Bathroom humor lynnnewman https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1660109837  Q: What did one toilet say to the other toilet?
 A: You look flushed. 

Love and hugs, 
Lynn and Andy]]> 2021-07-25 01:09:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1660109837 Pasadena here we come! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1661529777 7/26/21
Today has been a marathon clinic visit with blood draws, doctor's visit, and 3 infusions. We probably won't get home until 7pm...and then we are driving to Pasadena right afterwards! Zoe is so excited to see her grandparents and uncle so we want to maximize our time in southern CA. 

Here's Zoe with her zebra buddy, Zizzy. They look super excited about finishing up her chemo and getting out of here!]]> 2021-07-27 01:00:48 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1661529777 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1662160585 I hope you have a great time in Pasadena. You deserve a vacation! 
Love and hugs, Sally]]> 2021-07-27 14:05:17 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1662160585 Fun in Pasadena jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1670643498 8/5/21
Our trip to southern CA was a success! We saw many family members and even made a trip to San Diego to visit one of Zoe's closest friends! The day after we returned home we headed back to clinic to check blood counts. The entire time we were there Zoe was excitedly telling everyone about all the fun she had on her vacation. 

We're very fortunate that Zoe remained healthy during the entire trip, especially because it turned out her blood counts came back a little low. They canceled her chemo infusion and she's been placed on a low dose of oral chemo this week. The hope is that her counts will rebound enough for her next lumbar puncture scheduled on Monday. 

Next week is pretty huge and a bit stressful: LP on Monday and the start of a 5-day steroid pulse, which is always a little nerve-wracking. And then on Wednesday...first day of fourth grade! Zoe can't wait!]]> 2021-08-06 02:54:14 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1670643498 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1671638068 I'm so glad you had a great vacation!  It's nice to go away sometimes.  We just got home from a trip to NY where we saw Beacon Falls, which they light up at night.
Love and hugs,
Sally]]> 2021-08-07 11:05:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1671638068 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1674661304 I thought you could use a hedgehog for your first day of school tomorrow.  So exciting!

Lots of love,
Sally]]> 2021-08-10 22:45:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1674661304 First Day of School! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1676449921 8/11/21
Today was the first day of 9th grade (high school!) for Aimee and Jordan, and the first day of 4th grade for Zoe! It's been a little stressful leading up to this day, with many calls and emails between the school and doctors to make sure we have all the accommodations and emergency protocols in place. I am grateful to both Landels and Packard for working so closely with us to try and make Zoe's in-person school experience go as smoothly as possible. 

The day started off with us dropping Zoe off at school (because of covid, the school does not allow parents to stay with their child while waiting for school to start) and then heading to the high school to drop off the twins. While driving to the high school, Zoe's teacher texted to alert me that Zoe had almost passed out and was being taken to the nurse's office and that we had to come back to school ASAP. Unfortunately, the traffic getting to the high school was awful, so we had to tell the twins to get out of the car and walk the rest of the way to school so that we could drive to Zoe. By the time we got to the elementary school, Zoe was resting in the nurse's office. We thought she would have to go home, but she insisted that she felt better and wanted to go back to class. She managed to stay at school the entire time (it was a half day) and by the time we got home, she was exhausted and a little nauseated. Fortunately, she felt a lot better by the end of the day, and is excited to go back to school tomorrow. We'll see how she feels in the morning. While there were some scary moments and we are still figuring out what to do, I was relieved that things went pretty smoothly. It was not an easy day, but it was a good day!]]> 2021-08-12 05:34:17 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1676449921 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1682464171 Q: How do you pet a hedgehog?

A: Very carefully.

I hope you can go back to school next week.
Love and hugs, 
Sally]]> 2021-08-17 16:17:31 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1682464171 Covid and construction during first 5 days of school jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1683452050 8/17/21
Zoe managed to get in three days of in-person school before we were informed that a student in Zoe's class tested positive for covid (UGH). The school is being proactive about preventing the spread, as students must come to school with a negative covid test or quarantine at home for 10 days. Fortunately, Zoe tested negative, but after talking with the doctors, we decided the best course of action was to keep Zoe home this week. Assuming no further spread of covid, she will go back to school next week (though it would only be for a few hours each day because she's scheduled for chemo infusions every day next week.

Besides covid and other germs, the doctors are also very concerned about construction work that will happen periodically at the school. Dirt excavation can aerosolize fungal spores, and fungal infections are some of the worst infections you can get when you're immunocompromised. The doctors gave Zoe a heavy duty face mask that's used by stem cell transplant patients so she can wear it to school on the days that she has low blood counts and there's construction going on. Zoe took one look at it and flat out rejected the idea, so we will probably just keep her home on those days. But she did have fun pretending to be Darth Vader while wearing the mask!]]> 2021-08-18 04:30:57 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1683452050 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1693721888 I wanted to get our front doors painted a cheerful, fun color.  I might have gone too far. Do you think the aliens can see it from space?

Love and hugs,
Sally]]> 2021-08-24 14:26:38 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1693721888 Joy jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1694667852 8/24/21
Last Saturday, Zoe attended another virtual drawing class offered by Make-A-Wish. The class was led by Rej Bourdages, who is a story artist and animator for Pixar. He's animated a bunch of movies like Shrek, Toy Story, Cars, and Luca. Zoe mentioned that she liked the characters from the movie Inside Out, so he drew her a picture of Joy. Seems appropriate! :-)

This week Zoe has to go into the hospital every day for her chemo infusions. We scheduled the infusions for the afternoon, so she is able to attend a few hours of school each day before we head to the hospital. She's been doing great at school and enjoys spending time with friends. No additional covid cases so far, so hopefully she'll be able to continue attending in-person school as much as possible!]]> 2021-08-25 00:35:28 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1694667852 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1707656276 I took Simon to Elkhorn Slough to kayak.  We saw otters and seals and sea lions and lots of sea birds.  That's where we saw these pelicans.  Maybe we could go sometime?

Love and hugs,
Sally]]> 2021-08-31 17:17:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1707656276 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1710812942 Here is Margot with a prize the coach gave her players.  Yes, it's a box of Bertie Bott's Every Flavor Beans.  You can get them on Amazon but be warned:  ALL the flavors you've heard of are included.  
Bert, Maria and Margot]]> 2021-09-01 20:21:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1710812942 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1725664548 I got to visit the UCSC Arboretum this week.  I saw so many amazing plants and so many gorgeous flowers. Most of the blooming plants were from Australia, like the one above.
Love and hugs, 
Sally]]> 2021-09-08 17:51:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1725664548 Childhood Cancer Awareness Month jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1731616337 9/10/21
September is Childhood Cancer Awareness Month! Here's a link to a music video that was made by Zoe's favorite music therapist at Packard Hospital. Zoe's not in the video, but I love how it shows some of the beautiful kids currently receiving treatment, as well as the amazing staff that we get to see whenever Zoe is hospitalized on the oncology floor.

We started off the month by giving a presentation about cancer to Zoe's class. A Packard nurse graciously offered to talk to Zoe's classmates over Zoom, and she showed them a Peanuts episode where one of Linus's friends has leukemia. Zoe was excited but a little nervous about how the students would react to the presentation, but it went really well and everyone was very supportive! 

School in general has been going well though it can get pretty exhausting for her. She's getting better at figuring out when she needs breaks, and her teacher has been very supportive and accommodating. I still have my cell phone next to me at all times in case the school calls, but we're all feeling a little more confident each day.]]> 2021-09-10 18:11:01 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1731616337 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1740653613 When Simon comes home from school he's so tired he likes to lie on the floor.  Do you do this too?
Love and hugs,
Sally]]> 2021-09-14 20:27:44 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1740653613 Animated Hedgehog Greetings maddyhill1 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1752728441 Hi dear Zoe, Milly has been learning to make animations and you inspired her first hedgehog attempt! Lots of love from your old MVPNS buddy xxx]]> 2021-09-20 02:27:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1752728441 Hi Zoe, mfevitt https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1755109367 9/20/21
I was glad to hear about your many adventures when I got together  recently with some of the moms from your preschool class. You have been so brave!!

Here's a silly joke for you:
Q: Why do sea gulls fly over the sea? 

A: If they flew over the bay they'd be bagels.
 
I'm sending BIG hugs and lots of LOVE,
Teacher Marie]]> 2021-09-20 19:16:30 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1755109367 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1757578821 Our chickens are very curious about whatever we're doing because they think there's a chance whatever we have might be food.  Even my phone.  Here's Belle inspecting my phone for edibility.
Hugs and love and hedgehogs,
Sally]]> 2021-09-21 15:27:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1757578821 Steroids and Hair jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1761276324 9/22/21
It's the dreaded steroid pulse week, and the first time she has been on steroids during a full week of school. It's only Wednesday, and it's already been pretty rough going. Yesterday, she ended up staying home because she was so drained from Monday's school day and would have had to leave school early anyway for a doctor's appointment. Last night, she cried all evening saying she regretted choosing in-person school and that she felt self-conscious and lonely because she was always left behind. It was pretty gut-wrenching, but we knew it was mostly the steroids talking. By this morning, she'd calmed down enough to say she was willing to go to school, and we reassured her that she could come home anytime she wanted. 

I was fully expecting the school to call and tell me to pick her up, but she made it through the whole day! She even had a smile on her face and said she had fun with her friends and showed me a cute panda astronaut sticker that one of the teachers gave her. When we got home, she took a shower, and afterwards exclaimed, "Look, mom! I'm combing my hair!" I realized it was the first time she needed to use a comb since her hair started to fall out a year ago. I was so happy and relieved that a day that didn't start out so well ended with a big smile and a head full of messy hair! ]]> 2021-09-22 22:36:33 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1761276324 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1775323781 This comic made me think of you.  Are noodles still your favorite food?  I like rice vermicelli bowls from my favorite Vietnamese restaurant.

Big hugs,
Sally]]> 2021-09-28 16:46:43 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1775323781 Soil removal is our nemesis jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1785222935 10/1/21
We survived steroid week! So glad it's over and we don't have to think about it for another month.

Zoe has yet to experience a full week of school, so we were excited that this week she might be able to attend all five days of school because she didn't have any infusion appointments (first and probably last time this year that will happen!). Alas, the universe had other plans, because the principal informed us that construction workers were coming to school to move large mounds of dirt (big kudos to the principal for alerting us ahead of time!). The doctors had warned us that Zoe shouldn't be exposed to any activities that could potentially churn up fungal spores unless she wore a respirator mask (see post from 8/17), and since Zoe refused to go to school looking like Darth Vader we decided to let her stay home. It was only supposed to be a 1-day job but it ended up taking 2 days, so she stayed home both days. We worked on some assignments and then spent a lot of time playing in a bunker she built "in case there is a zombie apocalypse!"  ]]> 2021-10-01 23:00:54 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1785222935 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1793590377 Another week, another hedgehog.  I hope you're feeling well these days.  I'm sorry you had to miss school because of dirt.  
Big squeeze-y hugs,
Sally]]> 2021-10-05 15:52:44 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1793590377 Nelarabine week jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1802622115
10/8/21
Another week, another chemo. This week's chemo treatment is nelarabine, which is used only for T-cell ALL and is one of the few new chemotherapy agents that have been discovered in recent years. It's amazing and sad to think that, for Zoe's treatment protocol, all but the nelarabine are chemo drugs that have been around since the 1950's to 1970's. With all the money that is invested in cancer research, did you know that less than 4% goes towards pediatric cancer? On the one hand, I guess it's understandable because of the low incidence of childhood cancer relative to adult cancer. But on the other hand, LESS THAN 4%? Geesh.

I digress. I'm so grateful that Zoe is being treated with a chemo that specifically targets T-cell, since that is a rarer and more difficult to treat form of lymphoblastic leukemia. But the downside is that we have to go in for infusions every day for 5 days, and each infusion lasts 3-5 hours. It's tiring, but we try to make the best of it. This week, I've been making popcorn so that we can enjoy popcorn and a movie in the infusion rooms. Half the TV screens don't work properly, but we've been around long enough to find some tips and tricks to get them to work.

Maybe you can gather from the tone of this post that I'm a little worn out. Some weeks are a little tougher than others, but we always get through them. ]]> 2021-10-08 14:08:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1802622115 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1810941095 Here are two of the girls taking dirt baths in the yard.  They liked it so much in there I couldn't even lure them out with mealworms! I hope you're feeling good this week.
Lots of love,
Sally]]> 2021-10-12 14:28:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1810941095 Courageous Kids jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1823116898 10/17/21
On Saturday, we took Zoe to Great America for the Courageous Kids event sponsored by the American Cancer Society. They invited Bay Area children with cancer and their families to Great America for a day of fun activities, treats, and, of course, lots of fun rides! As you may recall from our post on 7/18, Zoe is quite the Great America fan, so she was super excited to attend the event. Even though she was a bit tired and decided not to go on any of the thrill rides this time around, we still had a lot of fun doing some arts and crafts and wandering around Great America looking at all the neat Halloween decorations. Thank you, American Cancer Society!]]> 2021-10-18 03:52:42 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1823116898 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1828473349 Do you think hedgehogs are ticklish?  This one looks like it might be, but probably only on the belly and toes.
I'm glad you got to go to Great America, it sounds like it was a fun event.

Love and hugs,
Sally]]> 2021-10-19 20:56:35 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1828473349 Happy Birthday, A&J! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1845613426 10/26/21
I normally don't post anything about the twins because they want their privacy and this padlet is mainly about Zoe's journey. But I feel compelled to post something today, their 15th birthday, to say how proud I am to be a parent to these two amazing, beautiful kids (almost adults!). Cancer affects the entire family, and it has certainly affected these two, whether it be staying home and being responsible for their own meals and completing homework while Tom and I spend hours at the hospital, or doing their part to calm and entertain Zoe during her steroid rages. Not once have they complained about all the time and energy that our family has had to divert away from them to support Zoe's treatment, even though they have gone through so many momentous life events of their own, like starting high school. 

Happy Birthday, Aimee and Jordan! Love you beyond words. As promised, we're going to be eating a LOT of cake tonight. :-)]]> 2021-10-26 16:29:59 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1845613426 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1849541241 I went for a hike last week before the rain came.  I found these rocks high up on a hill with a beautiful view.  I think they look like they belong on the sea floor; what do you think? I can almost see the fish swimming around them.

I hope you're having a good week.
Squeezy hugs,
Sally]]> 2021-10-27 22:04:14 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1849541241 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1862747408 Q: Why did the scarecrow get a raise?

A: Because he was outstanding in his field.

I hope you're having a good week.
Big hugs,
Sally]]> 2021-11-02 20:17:15 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1862747408 460 Days and Zoe in the news jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1872055054 11/6/21
I was just going through Zoe's medical records, and noticed that Zoe has now been on chemotherapy for 460 days! During those days, Zoe has received about 30 different kinds of drugs, a dozen of which are chemotherapy agents. Tomorrow will be a big milestone because it will be the last round of one of the big chemo drugs that she's been getting every month: nelarabine. This is the chemo that needs to be administered through her port every day for 5 days, so it's a tiring one for us since we have to go to the hospital every day and each visit takes about 4-5 hours. I'm excited to close the book on this one, but at the same time a little nervous since it's supposed to be one of the most effective chemo drugs for T-cell ALL. We can only hope and pray that it's done its job in getting rid of the cancer cells, especially in her cerebrospinal fluid, which is one of the notorious places where leukemia cells like to hide.

In other exciting news: Zoe's story has been published in a couple different places over the past several months. One is the Stanford Blood Center's newsletter and, more recently, in the Academy of Art Alumni newsletter (about Zoe's mural). The author of the Stanford Blood Center article recently reached out to tell me that Zoe's story led to an increase in blood donations, which was so gratifying to hear!]]> 2021-11-06 22:37:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1872055054 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1876037115 Love your Luna Lovegood costume - just be careful you don't end up imprisoned in the dungeons of Malfoy Manor for months!

Thinking of you and sharing this really bad math joke - 

Why was 6 afraid of 7?

Because 7, 8 (ate), 9. 

Sending huge hugs, 
Lynn and Andy]]> 2021-11-08 18:45:44 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1876037115 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1881931492 Q: How do you tame wild rice?

A: With a very small saddle.

I hope you're feeling good and happy to be done with the nelarabine. That's a big milestone!

Hugs, 
Sally]]> 2021-11-10 17:11:28 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1881931492 Covid shot #1! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1882583350 11/10/21
Zoe got her first covid shot! And a selfie with Dr. Fauci!]]> 2021-11-10 22:45:16 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1882583350 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1895308542 Q: Why don't Americans eat snail sandwiches?

A: Because they like fast food.

Hugs,
Sally]]> 2021-11-16 22:34:03 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1895308542 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1906432823 Sam really enjoyed meeting this little guy at Happy Hollow. Wishing all of you a very Happy Thanksgiving,
Nancy]]> 2021-11-22 15:48:12 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1906432823 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1909088074 Happy Thanksgiving!  I hope you have a lovely holiday.  I'm looking forward to pumpkin pie but I preferred apple pie when I was your age.  My niece doesn't like pie at all (!) so we're also having chocolate cake. I hope you get too much dessert.
Love,
Sally]]> 2021-11-23 18:43:29 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1909088074 Happy Thanksgiving! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1911872074 11/24/21
We feel very fortunate that Zoe's chemo schedule worked out such that she only needed to be at the hospital on Monday during Thanksgiving week. Her chemo is pretty mild this week (methotrexate infusion on Monday and oral 6MP for the rest of the week), so her oncologist gave us the go-ahead to travel down to southern CA for Thanksgiving! The kids have no school for the entire week, so we started driving to Pasadena as soon as her infusion was complete. We were all thrilled to see the grandparents and Uncle Yuki when we arrived on Monday night, and we're looking forward to a fun reunion with aunts, uncles, and cousins on Thanksgiving day. So much to be thankful for this year! Happy Thanksgiving!]]> 2021-11-25 04:49:59 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1911872074 ZERO! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1928284375 12/3/21
We have some amazing news to share this week! After 1 year and 4 months of cancer treatment, Zoe's cancer is in remission! "Remission" is kind of a tricky term to use for blood cancers because, unlike solid tumors, the cancer is everywhere in her blood, bone marrow, and cerebrospinal fluid. This makes it more difficult to ascertain whether all the cancer cells have been fully removed from her body, and this is why chemotherapy for leukemia takes so much longer than most other cancers. However, there is a sophisticated test called next generation sequencing minimal residual disease (or NGS MRD) that can detect 1 cancer cell out of 1 million blood cells. And I am so thankful to report that for the first time, the report indicated ZERO cancer cells! Hooray!

We are well aware that there is still a chance that cancer remains hidden in her body, which is why she will continue with her course of treatment for the next 1.5 years. But to finally see 0 cancer cells when her first MRD test showed 1.5 million cancer cells makes me so, so grateful and relieved! Her attending was actually so excited to share the news that he emailed me directly with the subject line, "Here's the report we've all been waiting for!" You can say that again! ]]> 2021-12-04 00:14:41 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1928284375 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1934662450 This hedgehog is cheering for you; we're so glad you're in remission!  That's amazing.  

Love and hugs,
Sally]]> 2021-12-07 22:52:07 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1934662450 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1947246988 I went for a walk near my house and saw 25 juvenile turkeys wandering around on the trail!  They were acting like a bunch of kids who just got out of school - bumping into each other and hopping up and down.  Maybe turkey school just got out?
Love,
Sally]]> 2021-12-14 15:09:25 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1947246988 Sing 2 Premiere jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1954048424 12/17/21
A few months after Zoe was diagnosed with leukemia, the Make-A-Wish (MAW) Foundation reached out to grant Zoe a wish. Her original wish was to meet JK Rowling, but after multiple failed attempts to try and reach her, MAW asked if Zoe would want another wish. At first, Zoe didn't have any other wish ideas, but then when she found out that one of her favorite movies, Sing, was coming out with a sequel, Zoe immediately decided her wish was watch Sing 2 before it came out in theaters. She was just thinking of maybe a way to stream it early and watch it from home or a local theater, but MAW took it a step further by arranging for Zoe to attend the Sing 2 premiere in LA!

At first, it looked like the logistics would not work out. While MAW was starting to allow domestic travel wishes, they required covid shots, and at the time Zoe made this request (over the summer) it wasn't clear when 5-12 year olds would be able to access the vaccine. Fortunately, everything all worked out in the end, and this past weekend Zoe and the rest of the family flew to LA to attend the Sing 2 premiere at the Greek Theatre in Griffith Park! It was an amazing VIP experience, starting with a white stretch limo that picked us up. Then at the airport, Southwest Airlines went out of their way to make Zoe feel special, including some one-on-one time with the pilot who let Zoe hang out in the cockpit with him. We stayed at the Loews Hollywood hotel and got to hang out with the grandparents, which was extra special because it was their grandfather's birthday.

On premiere day, another limo came to pick us up and then we were invited to a special pre-movie dinner and then VIP seats in the theater. We weren't able to walk the red carpet because of covid restrictions but we saw all the celebrities involved in Sing 2 (the previous cast plus new characters, including Halsey and Bono!). The whole movie experience was super fun because they made it very interactive with lots of singing and flashing lights. It was also kind of surreal to look around and see that we were seated next to celebrities and their families.

When I asked Zoe what she thought about her wish experience she exclaimed, "It was even better than I imagined!" Thank you so much to Make-A-Wish Greater Bay Area for bringing so much joy to our special gal!]]> 2021-12-17 17:05:43 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1954048424 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1959542443 Here's a picture of a banana slug that was in my driveway when your mom came by my house.  Thank you so much for helping with the chickens next week!

Hugs, 
Sally]]> 2021-12-21 22:04:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1959542443 Christmas Fun, Halfway Done jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1964046014 12/25/21
Merry Christmas to those who celebrate this holiday! Today was a fun, restful day for the family. On Thursday, Zoe got an infusion of cyclophosphamide and cytarabine, two chemo drugs that often make her feel tired and nauseated for several days. Fortunately, she experienced no bad side effects this time around, and she was all smiles and full of energy today, even waking up (way too) early to open up presents!

Christmas Day also marks the halfway point in Zoe's treatment! If all goes according to plan, we anticipate her last day of chemo will be on May 17, 2023. It still seems so far away, but we're getting closer every day!

]]> 2021-12-26 08:02:28 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1964046014 Total 17 Clinical Trial jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1969445565 12/30/21
As some of you know, Zoe's treatment is part of a clinical trial led by St. Jude's Hospital. The clinical trial is called Total XVII, and represents the 17th generation of the clinical trial studies that essentially turned childhood leukemia from nearly 100% fatal to almost 90% curable. Here is a link to a fascinating article in the Smithsonian magazine that provides the history of this clinical trial and Donald Pinkel, the oncologist at St. Jude that pioneered many of the approaches that are still used today. 

Total 17 has several research objectives, one of which is to determine if they can shorten the duration of one of the most toxic chemotherapy agents and still achieve the same survival rate while lowering the risk of long term negative side effects. A few weeks ago, we found out that Zoe was randomized to the treatment arm of this trial, which means that she will receive 50 fewer weeks of vincristine and its equally awful companion dexamethasone (the dreaded steroid). Today was her last dose of vincristine and next week will be her last steroid pulse. In place of these chemo drugs she will take 6MP and methotrexate, which have their own not-so-great side effects but hopefully less toxic. 

I have mixed feelings about this: on the one hand, it's a relief to know that we don't have to deal with some of these awful side effects anymore, but on the other hand, what if they find out that this increases her risk of relapse? Already, another component of this clinical trial (which was to reduce the number of lumbar punctures) has shown an increased rate of relapse in earlier participants of this study (it started in 2017), so they recently revised the study protocol to include the extra LPs from now on. Zoe is also one of the only T-cell leukemia patients enrolled in the entire study (and the first one with T-cell enrolled at Stanford), so there's not much precedent on how this will affect her specific type of leukemia. 

It's pretty scary to think that my child is an experimental guinea pig...and I say this as a research scientist who is well-versed in clinical trials! However, it's also humbling to know that we wouldn't even be given this chance if it weren't for the thousands of children and their families who came before us.  ]]> 2021-12-31 04:51:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1969445565 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1969764511 Thank you so much for looking after the flock while we were out of town. I'm so glad to hear you had your last dose of vincristine, you've made it through so much treatment!  I hope you have a very happy new year.

Love and hugs,
Sally]]> 2021-12-31 17:39:02 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1969764511 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1974072493 Over winter break we went to the Petrified Forest in Calistoga.  We got to see redwood trees made out of rock, like the one in the picture above.   

Big hugs,
Sally]]> 2022-01-04 12:46:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1974072493 Hi Zoe, https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1986656697 Right now I'm watching water getting splashed down from my roof by the birds that are bathing in the puddles up there (see pic above).  My roof is flat and I'm not thrilled to have puddles on it, but I'm glad they're good for the birds.

I hope you're feeling good.

Love and hugs,
Sally]]> 2022-01-11 18:03:12 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1986656697 Book Signing and Covid Booster jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1986992799 1/11/2022
Happy New Year! Hope everyone had a fun and relaxing holiday break. Ours was mainly about sleeping in, cooking and baking (and eating!) up a storm, and taking leisurely walks around our neighborhood. In other words, perfect!

Over the weekend, our dear friends Waka and Tricia came out to the Bay Area for a visit. Waka recently wrote a book for upper elementary/middle schoolers titled, While I Was Away, which Zoe absolutely loved! This was the first time we got to see Waka since her book's debut, so Zoe was eager to have her autograph the book. We're so proud of you, Waka, and can't wait to read your next book!

Zoe's treatment continues to go smoothly. Last week, the CDC approved boosters for immunocompromised 5-11 year olds, so Zoe was able to get her third shot! They've been testing her blood every few weeks since her second covid shot to see if she's been able to develop any covid antibodies. So far, no luck, but hopefully she's still getting some protection and the booster will further help. Nevertheless, with omicron spreading, the doctors suggested we keep her home if she ever gets a close contact notification (which she did the very next day), so we're homeschooling this week. Fingers crossed that the spread starts to slow down and that Zoe can be back in school soon!]]> 2022-01-11 21:02:24 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1986992799 mfevitt https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1996490431 Happy 2022, Zoe,
It is so exciting to see the progress you are making with your treatments. I recently helped with a docent hike at Purisima Creek Redwoods and thought of you when we saw these mushrooms called Sunny Side Up. That is is so you and your family, looking on the bright side of your entire journey.
LOVE, BIG hugs and Foo kisses,
Teacher Marie ]]> 2022-01-17 19:28:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1996490431 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1999206984 Hi Zoe,
Today the girls decided that what was in my bucket (dead leaves) was much more interesting than anything else in the yard.  It made gardening a little more challenging than usual.
I hope you get to go back to school soon!
Hugs,
Sally]]> 2022-01-19 00:15:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/1999206984 Home schooling jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2005823076 1/21/22
Per doctor's orders, Zoe had to stay home for the past two weeks as we wait for covid rates to go down. At yesterday's appointment, we finally got the go-ahead to go back to school next week, but only if there was no covid in Zoe's class. Zoe was so happy, but then this morning her teacher informed us that there was at least one positive covid case found in their weekly pooled testing. That means Zoe will have to stay home again for at least another week. We're trying to make the best of things by going on hikes and doing lots of cooking and baking. Zoe's maintained a positive attitude throughout, even though she misses her teacher and classmates. Keeping fingers and toes crossed that those with covid recover quickly, everyone else stays healthy and covid-free, and Zoe can go back to school soon!]]> 2022-01-21 21:24:58 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2005823076 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2012458953 Hi Zoe,
I'm so glad you're hiking again.  Hiking in the woods is my happy place.  The picture above is from one of my really big hikes; it's of the Tuolumne River in Yosemite National Park.

I hope I can hike with you soon!
Sally]]> 2022-01-26 00:50:58 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2012458953 Waiting to return to school jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2017387962 1/27/22
We've been trying to make the best of Homeschooling Week #3 by baking yummy treats (courtesy of Nancy and her boys!) and going for walks after Zoe finishes up her homework. We even took a field trip to Oakland Zoo yesterday. It's been fun, but Zoe really misses school. So far there's no covid reported in her class and her white blood cell count remains stable, so we are keeping fingers crossed that she will be back in school next week!

Typically, today's clinic visit would be her monthly vincristine infusion and the start of another steroid pulse week. However, because she was randomized to her clinical trial's treatment group (see post from 12/30), the vincristine and dexamethasone were replaced with the less awful chemo drugs methotrexate and 6MP. In the past, any physical recovery her body would make in the three weeks between each vin/dex round would be lost as soon as she got her next vincristine infusion, and we would be back to square one. Without the vincristine, I'm hoping that she will continue to build up her stamina and eventually get close to her pre-cancer energy level and strength! ]]> 2022-01-28 06:50:42 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2017387962 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2023798856 Hi Zoe,
Above is a picture of a crazy bee hive in our yard. It started more than a year ago and now it's more than two feet long! Unfortunately it looks like the squirrels or raccoons are starting to eat the comb trying to get at the honey. Can't really blame them.

I'm glad to hear you're back in school!
Hugs,
Sally]]> 2022-02-01 16:59:20 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2023798856 Birthday love at the Bass Center jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2028918520 2/3/22
It's been a great week for Zoe, mainly because after three long weeks confined to home schooling she was finally able to go back to in-person school! And then today during her weekly hospital visit, the staff at Packard Hospital's Bass Center (the clinic where she receives her infusions) threw an amazing birthday surprise! They brought over balloons, cake, a craft gift, and a card signed by all the nurses, and her doctor also gave her a cute bunny stuffie. Despite feeling a little fatigued from the chemo and long-ish visit (about 5 hours), Zoe left the hospital with a big smile on her face and a lot of gratitude in her heart. We are so blessed to be cared for by this amazing team!]]> 2022-02-04 06:15:06 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2028918520 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2039036271 Hi Zoe,
It's been so warm lately that the flock has been sunbathing.  I like the way they fan their feathers out when they lie in the sun.

I hope you're enjoying school.
Love and hugs,
Sally

]]> 2022-02-09 23:01:04 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2039036271 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2049233755 Hi Zoe,
It feels like a good day for a hedgehog pic, don't you think? Do you think hedgehogs ever eat the flowers?
Big hug,
Sally]]> 2022-02-15 18:16:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2049233755 Thank Goodness for Child Life Specialists! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2053965758 2/17/22
We're plugging along with Zoe's treatment and, so far, everything has been going pretty smoothly (knock on wood!). However, this morning we were feeling pretty frazzled as we hurried to get to Packard on time for an all-day infusion. Sadly, in our rush, Zoe forgot to bring a stuffie to the hospital. In all these many months of treatment, Zoe has never been without one of her stuffies. Along with her yellow hat, the stuffie is definitely a security blanket that helps her get through all the ups and downs of treatment. She tried her best to hide how sad she felt, but it was pretty evident that she was feeling out of sorts without a stuffed animal to keep her company. Thankfully, one of the child life specialists could see she wasn't very happy. When he realized the problem, he left our room and quickly came back with a brand new stuffie in hand! 

Before Zoe's cancer, I had never even heard of child life specialists. These healthcare professionals provide comfort and support when pediatric patients are scared and anxious about what's happening to them in the hospital. I remember when Zoe was first diagnosed and we were admitted to Packard ER, we were both so scared and had absolutely no idea what to expect. Fortunately, one of the first people we met was a child life specialist who calmly explained each procedure as it was happening, and played fun games with Zoe to distract and comfort her as a whirlwind of nurses, doctors, and technicians streamed into our room. 

Child life specialists...just one of the many heroes we've met during this cancer journey!]]> 2022-02-17 19:41:13 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2053965758 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2061093034 Hi Zoe,
Yesterday I went hiking at one of my favorite parks (Russian Ridge Open Space) and saw this helicopter parked in a field.  Apparently it was helping put up new power poles in the Santa Cruz Mountains by dragging the poles into position on the. hillside. Crazy.

Your new stuffie Kiwi is adorable.
Love and hugs,
Sally]]> 2022-02-22 17:55:31 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2061093034 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2071938987 Hi Zoe,
It's really feeling like spring and the chickens are acting like they have cabin fever.  They want to be out in the yard all the time and they want to eat everything in sight. This is Bell inspecting me to see if I have any more treats. She's very serious about treats.

Big hugs,
Sally]]> 2022-03-01 17:26:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2071938987 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2079416670 Hi Zoe,
I took a hike yesterday on a trail called Ancient Oaks. There were huge, beautiful, moss-covered oaks like the one in the picture all along the ridge. It was misty and cold and perfect. 
Hugs,
Sally]]> 2022-03-05 20:07:25 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2079416670 No news is good news! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2096365201 3/15/22
My lack of posts the past few weeks is because everything has been going pretty smoothly for Zoe in this phase of her treatment (knock on wood!). While I still feel a little anxious that Zoe was randomized to stop receiving vincristine and steroids, there's no denying that quality of life has improved considerably now that those meds are off her chemo regimen. I feel like Zoe is getting stronger each day, and she is now able to attend PE regularly at school. She's able to walk for longer distances, and is averaging about 3000 meters each time she gets on our home rower! The twins have also started training her on taekwondo so that she can catch up on everything she's missed/forgotten these past few years, and hopefully she will be taking taekwondo classes again starting this summer. We are still trying to figure out the right dosage for one of her chemo drugs, so there's still a risk that she may become too severely immunocompromised, in which case we'd have to pull her out of school until her counts go back up. But so far they've done a great job of maintaining her white blood cell counts within the appropriate range.

One issue that did come up with her oncology fellow recently is the discussion around Zoe's weight. Because steroids made her ravenous and bloated, she gained a lot of weight during a short period of time (her body is covered in stretch marks, even along her knees and elbows). Now that she is off steroids, her appetite has decreased and we are able to increase physical activities, so her weight has gradually gone back down. Still, at each weekly visit, her doctor kept remarking on Zoe's weight, gently scolding her if she mentioned craving desserts or that she wasn't being as physically active. The doctor would try to say these things in an encouraging, positive way, but it got to the point that Zoe started feeling anxious about clinic visits because she was self-conscious about having her weight checked and worried she was disappointing her doctor. I finally got fed up with it and told the doctor that I did not want her to mention weight in front of Zoe. Any concerns should be directed to me in private so that she and I can work together to find the best approach to support Zoe's health and weight maintenance. While I definitely appreciate how much she cares about Zoe's overall physical health, her mental health and emotional well-being are just as important. Fortunately, her doctor was very supportive and apologetic, and since then the clinic visits have gone much more smoothly, with Zoe once again looking forward to seeing her awesome doctors and nurses!]]> 2022-03-15 16:35:48 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2096365201 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2096431429 Hi Zoe,
I just took a trip to Point Lobos near Monterey; it was amazingly beautiful (see photo above)! 
By the way, if you like Wordle, you might also like Quordle.  You have to solve four Wordles at the same time but you get more guesses. I play them both every day.

Love and hugs,
Sally]]> 2022-03-15 17:10:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2096431429 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2107598316 HAPPY SPRING ZOE!
This Sunday was the spring equinox, which is a good excuse to spend extra time outside.
Big hugs,
Sally]]> 2022-03-22 14:05:25 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2107598316 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2119860450 Hi Zoe,
I went to see the elephant seals on the central coast.  While I was at the parking lot railing taking pictures of the seals on the beach, I felt a little movement on the fence. When I looked down I was nose to nose with this ground squirrel. He was very hopeful that I'd feed him. When I didn't give him any food, he moved on to the next person down the fence.

Big hugs,
Sally]]> 2022-03-29 17:29:48 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2119860450 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2130758977 Hi Zoe, 
I went to see some wildflowers this week, and I got a bonus turkey sighting! All the female turkeys were browsing in the bushes and the males were displaying their plumage out in the open. Have you ever heard them gobble?  They're very loud.
Hugs,
Sally]]> 2022-04-05 14:14:40 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2130758977 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2141551477 Hi Zoe,

Question: What do you call cheese that is not your own?

Answer: Nacho cheese!

I hope you're having a great time in Pajaro Dunes!
Hugs,
Sally
ps.The picture above is of some irises in my yard.

]]> 2022-04-12 22:37:02 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2141551477 Spring Break jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2144037756 4/14/22
It's been a busy month for the Li kids! Since my last post, Jordan has been competing with his robotics team at two regional tournaments, and now they've qualified for the national championships and will be heading to Houston next week! Aimee got to spend a week in Oahu and Maui with her school choir and is now busy preparing for taekwondo competitions in Reno and Dallas. Whew...hard to keep up with these kids!

Despite everyone's busy schedules, we managed to squeeze in a quick spring break getaway to Pajaro Dunes and the Monterey Bay Aquarium. Zoe was thrilled to play on the beach and see all the sea animals, though we could only stay for a few days since it was sandwiched between a robotics tournament and Zoe's next infusion. 

One bit of good news: the doctors recently told us that they think by this summer Zoe should be able to switch to every other week infusions and maybe even once a month infusions by the fall/winter! We're excited by the idea of not being so tethered to the hospital anymore. However, we also feel a little nervous that we won't feel the reassurance and security that come with seeing her medical team on regular basis. Still, we realize this is a sign that Zoe continues to improve and is one step closer to finishing treatment. So grateful for that!]]> 2022-04-14 15:39:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2144037756 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2158615536 Hi Zoe,
We just went to Olympic National Park to see the temperate rainforest- it was beautiful. The trees were huge and covered in moss. Can you see Simon and Brian in the lower right hand corner of the picture?
I hope you're feeling great!
Hugs,
Sally]]> 2022-04-26 14:21:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2158615536 Nurses Strike and Stuck at Home jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2165095049 04/29/22
It's been an interesting week. On Monday, nearly 5000 nurses from Stanford and Packard Children's Hospitals went on strike. Nurses are obviously critical to Zoe's treatment, so her medical team has been scrambling to find workaround solutions during the strike. We support the nurses and really hope the negotiations go well and that the strike ends soon!

On Tuesday, we discovered that there were several positive cases of covid in Zoe's class, so we had to pull her out of school for the rest of the week. Zoe was not at all happy about this because she gets bored doing schoolwork at home and misses her friends and teachers. I tried to liven things up by letting her make her favorite desserts during "cooking class" and taking her on a special "field trip" to the movie theater. This was the first time she's been in a theater since the pandemic started, so it was quite exciting for her! We went to a Thursday matinee and ended up having the entire theater to ourselves. She had a blast eating popcorn and drinking an icee while watching Sonic 2. It was a fun way to spend the week, but our fingers are crossed that things go back to normal soon!]]> 2022-04-30 05:06:13 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2165095049 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2168263543 Hi Zoe,
I saw this beautiful native iris on a hike in Montebello Open Space this week. The wildflowers have been amazing this year. I think they liked all the rain we got in December.
Hugs,
Sally]]> 2022-05-03 13:09:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2168263543 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2178334697 Hi Zoe,

Q: What do you call a pig that knows karate?

A: A pork chop.

I you're back in school and having fun.

Hugs,
Sally
ps. The flower in the picture is bigger than my hand! I've been trying to grow it for a few years and it's finally happy. ]]> 2022-05-10 21:31:20 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2178334697 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2187954429 Hi Zoe,
Here's a flower I saw when I hiked with your mom last week. It's called Cardinal Catchfly.

Hugs,
Sally]]> 2022-05-17 16:35:33 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2187954429 One Year to Go! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2188922119 5/17/2022
If all goes well, one year from today Zoe will officially be done with chemotherapy! It's still a long ways off, but it's so exciting to know that the end is in sight! 

The doctors seem to have found the sweet spot in her chemo dosage that puts her white blood cell count at the optimal level (not too low to make her dangerously immunocompromised, but not too high that it increases the chance of the cancer cells multiplying). So far, there have been minimal side effects, though they continue to keep a close eye on her blood chemistry, especially her liver. I've noticed that her nausea has increased slightly in recent weeks, which they warned us could happen as she continues taking a daily oral chemo drug called mercaptopurine. We're usually able to keep the nausea at bay by having her eat a light snack and take Zofran. We also have to remain vigilant about fungal infections, and they have been a little concerned that she has had recurring thrush, but antifungal meds have helped clear those up.

There's really not much else to report about her chemo treatment, which is a GREAT thing! And while we still have to go in regularly for chemo infusions and check-ups, most of Zoe's energy is focused on non-cancer stuff, like end-of-school activities and looking forward to summer break!]]> 2022-05-18 06:04:21 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2188922119 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2197789044 Hi Zoe,
I went to another garden this week and saw this beautiful tree blooming. It's called Palo Verde, which means green tree (because the bark is green).
I hope you're enjoying the end of the school year.
Hugs,
Sally]]> 2022-05-24 14:20:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2197789044 Another day, another flower https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2206173074 Hi Zoe,

Q: Why did the banana go to the doctor?

A: It wasn't peeling well.

I hope you're having fun with the end of the school year!
Hugs,
Sally]]> 2022-05-31 14:34:43 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2206173074 Summer Fun has Begun! jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2211909057 6/6/22

Hard to believe the school year is over! Zoe's last day of fourth grade was on Friday. Her class ended the school year by putting on a musical about the California Gold Rush. Zoe played Samuel Clemens (aka Mark Twain) and got to perform for the whole the school. The twins still have some final exams to take and then they will be officially done with their freshman year of high school!

We celebrated the end of the school year with one of our favorite summertime activities: strawberry picking and pie eating at Gizdich Ranch in Watsonville! Another fun event we're looking forward to this summer is the Summer Scamper! This is the annual 5K event to raise money for Packard Children's Hospital. Last year, my friend Roxanne organized "Team Noodles" to raise money for the Bass Center for Childhood Cancer and Blood Diseases, which is where Zoe gets treated when she visits Packard. My friend is participating in the Summer Scamper again this year, and this time, we'll be joining her! If you are able, please consider contributing to Team Noodles in order to help us raise funds. Zoe wouldn't have come this far if it weren't for the amazing care that she receives at Packard!]]> 2022-06-06 07:27:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2211909057 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2213731564 We found this juvenile raccoon sleeping in a tree right off our deck.  He groomed himself, yawned really big, and then planted his face in the bark and went to sleep!

Happy summer!
Sally]]> 2022-06-07 14:52:32 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2213731564 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2221278476 Hi Zoe,

Q: What did Sushi A say to Sushi B?

A: Wasabi?

I hope you're having a good start to your summer!
Hugs,
Sally]]> 2022-06-15 00:01:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2221278476 Covid, Cubing, and Chemo jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2226204757 6/20/22

Last weekend, Aimee tested positive for covid. She felt pretty miserable for a couple days, mainly a bad sore throat and high fever. She's feeling much better now, but still testing positive. As soon as she had symptoms, Aimee started isolating in her room. Poor kid has been cooped up in her room for over a week and bored out of her mind (enough to clean her room...even vacuum!), but she understands why we need to be so careful and has never complained. So far no one else in the family has gotten covid (knock on wood), so hopefully the isolation worked!

One positive consequence of Aimee's isolation and our family's self-imposed quarantine is that it's forced Jordan and Zoe to hang out together more. Aimee usually acts as peacemaker between those two, but even without her there, Jordan and Zoe have gotten along surprisingly well! Jordan even taught Zoe how to solve the 3x3 Rubik's cube and now Zoe can solve it in around 2 minutes. 

Because Zoe had a family member with covid, the hospital had to take extra precautions, and her lumbar puncture that was scheduled for last Thursday got moved to today (Monday). The LP went smoothly, but post-op recovery has been tougher than usual, with lots of vomiting even though she's maxed out on all her anti-emetics. After a couple rough hours, things are starting to settle down and hopefully she will feel better soon. 

For today's hospital visit, we got to see Zoe's attending oncologist, who hasn't actually seen Zoe since January because she's usually seen by the oncology fellow. He remarked on how great she looks now compared to last year, mainly because she's no longer on steroids and vincristine. He decided to increase one of her chemo meds, which concerned me a little because the fellow had already increased it slightly a few weeks ago. The fellow was being more conservative with the dosing because Zoe's blood counts usually tank if the dosing is increased too quickly. But the attending seems to think it won't be a problem this time around. I'm a little skeptical, but I guess we'll just have to put our faith in these doctors and hope for the best!]]> 2022-06-21 00:45:16 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2226204757 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2226766981 Hi Zoe,
I'm so impressed you learned how to solve the Rubik's cube! I've always wanted to, but I've never had the patience. Maybe you could teach me how to do it?
Hugs,
Sally
ps. The picture above is of wildflowers that volunteered in my yard!]]> 2022-06-21 12:31:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2226766981 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2232539908 Hi Zoe,
I took a hike yesterday, and it was bunny-palooza! Sometimes they let me take pictures, and sometimes they were too quick for me.
Hugs,
Sally]]> 2022-06-28 14:49:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2232539908 Neutropenic jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2235303334 7/1/22

In my 6/20 entry, I mentioned that I was a little skeptical and concerned that the doctors were increasing Zoe's chemo too quickly. I mentioned my concern to the oncologist but he reassured me that everything should be fine, so I didn't push the matter. Turns out I should have listened to my "spidey sense" because this week's blood test results show that her white blood cell count has completely tanked and she is now severely neutropenic (i.e., not enough neutrophils, a type of white blood cell, to fight bacterial or fungal infections). For reference, healthy people have an absolute neutrophil count (ANC) between 2500-6000, for leukemia patients they try to keep the ANC around 500-1500, and Zoe's ANC is currently at 0 . The last time she was this immunocompromised was more than a year ago when she was at the height of her treatment and getting bombarded with chemo. Everyone was so surprised at how quickly her counts dropped and now we have to keep her isolated and stay hyper-vigilant. They told us the slightest sign of fever or pain is a trip to the ER. 

I can't believe we are back to this place. I know it's just part of the cancer journey, but I was so hoping that we were out of this phase for good. For now, she's on chemo hold with the hope that her counts will rebound quickly since she is otherwise healthy. Fingers crossed that we make it through unscathed.]]> 2022-07-01 20:38:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2235303334 Me and Zoe jlidianhua https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2235681502 Hi Zoe!! I hope your summer has been great, I really wish that we could see you in person over the break. I've been into Minecraft for at least as long as the second semester. I hope Amy is doing all right. Morgan misses her and hope she gets better soon.(also Morgan has a boyfriend!) Anyways that's all I have to say. I hope I see you soon!!!

Love ❤️, yours truly Alexis Ho.]]> 2022-07-02 23:44:33 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2235681502 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2238144233 Hi Zoe,
Q: What do you call a snowman in July?

A: A puddle.
I hope you're feeling better. 
Hugs,
Sally

]]> 2022-07-06 13:58:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2238144233 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2240984137 Hi Zoe,

I went hiking and saw this eggshell on the trail; it's from a robin's egg. I think part of the reason I like hiking so much is that it feels like a treasure hunt. 

Hugs,
Sally]]> 2022-07-11 11:52:35 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2240984137 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2246249419 Hi Zoe,
I was just visiting Carmel-by-the-Sea and saw these deer on the beach while on a bike ride! Do you think they're a little lost? Or do you think they like to eat seaweed?
Hugs,
Sally]]> 2022-07-19 14:52:08 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2246249419 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2249985992 Hi Zoe,
Have you heard about the new park in the Presidio called Tunnel Tops? It's great! Here's a picture of Brian taking a spin on one of the crazy rolling chairs we found there. 
I hope you're having a good summer.
Hugs, Sally]]> 2022-07-26 14:32:45 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2249985992 ANC Pendulum jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2250171188 7/26/22

Summer is winding down, and while it hasn't been the most exciting summer for Zoe, we still got to do some fun activities like going to the beach, Great America, movies, and park playdates with friends. We had other fun day trips planned, but they had to be canceled when Zoe became neutropenic. Fortunately, her counts were high enough for us to go see the Harry Potter play in SF. Zoe absolutely loved it and is begging to see it again!

After two weeks of rock bottom blood counts and a chemo hold, Zoe's absolute neutrophil count (ANC) slowly began to rise, so her doctors put her back on chemo, but at super low doses because they were worried she would tank again. However, the following week when they checked again, her ANC suddenly skyrocketed to 4000 (500 to 1500 is the range they're aiming for). So now they are increasing her dose some more but still incrementally because they're not sure what will trigger it to crash. Below 500 and she is neutropenic and at risk for severe infections. Above 1500 and she is at greater risk for relapse. It's like this crazy pendulum that is swinging wildly as the doctors try to course correct. I'm confident we'll get there eventually, and hopefully everything will be smoothed out before school starts on August 10.

One interesting piece of info I learned recently: when I mentioned Zoe's ANC to my oncologist friend who treats adults, she was amazed that the goal was to keep the ANC below 1500. She said that anything below 1800 in adult cancer patients is considered neutropenic and that an ANC of 0 is like a death sentence. Her patients' median age is in their 70's, so clearly a different population. But still, it is fascinating to discover how much more pediatric oncology is willing to push the envelope with cancer treatments because kids' bodies are so much more resilient. ]]> 2022-07-26 22:20:07 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2250171188 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2253477514 Hi Zoe,
Simon went to Deer Crossing Camp in July, and he brought home this chicken! As you can see from the photo, the new chick and the old hens aren't friends yet. We're working on that.
Happy end of summer!
Sally]]> 2022-08-02 14:18:56 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2253477514 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2257467556 Hi Zoe,
I think school is starting for you soon, it will be so fun to see your friends at school every day! 
I found this tiny feather that's not much bigger than an acorn cap. 
Hugs,
Sally]]> 2022-08-09 14:40:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2257467556 San Diego jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2257958384 8/9/22

Last week, Zoe and I took an impromptu trip to San Diego to visit our wonderful friends! Zoe couldn't wait to see her bestie, also named Zoe, whose family moved from Mountain View to San Diego a few years ago. To say that Zoe was excited for this trip is an understatement! She loved every minute of her time in San Diego, with highlights including her first ride on a paddle board, snuggling up with friends in a hammock while watching a backyard movie, and devouring a huge ice cream cone ("It's almost as big as my head!"). 

When it was time to go home, she was pretty sad to leave her friends, but fortunately her grandparents and uncle came up to visit over the weekend and left this morning. Now we're looking forward to tomorrow, which will be the first day of school for Zoe (5th grade) and the twins (sophomores). Hard to believe that summer is almost over, but what an awesome way to end our summer vacation! ]]> 2022-08-10 05:50:30 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2257958384 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2262329900 Hi Zoe,
I was worried they might not become friends, but our new bird (HP) is finally settling into the flock. What a relief! 
I hope you're having fun back at school.
Hugs,
Sally ]]> 2022-08-16 14:56:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2262329900 Back to School https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2265561775 Hi Zoe,
I hope the start of fifth grade is going well. The beginning of school is always one of my favorite times of year. Since I retired I try to schedule a trip so I don't miss school. This year I'm going to Alaska. I've wanted to travel there since I was about your age. I plan to do lots of hiking and I have a tour scheduled to walk on a glacier.
I'm sending BIG hugs and lots of LOVE,
Teacher Marie  ]]> 2022-08-19 14:56:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2265561775 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2268863655 Hi Zoe,
I hope you're having fun at school. I missed our camping trip to HMB this year, maybe you can come over to make s'mores at my house some time?
Hugs,
Sally]]> 2022-08-23 14:47:05 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2268863655 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2276417457 Hi Zoe,
Can you guess what these weird looking white things are? The first thing my brain told me when I saw them was "Marshmallows.", but I think they're snake eggs. 

I hope school is fun!
Love and hugs,
Sally]]> 2022-08-30 15:23:47 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2276417457 Looks Can Be Deceiving jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2278419691 8/31/22

Zoe's now a 5th grader! She's been back in school since August 10th. She still has to visit the hospital every week but some weeks it is just a blood draw so we are able to go right after school. So far, she's only missed two days of school for longer procedures/doctor visits, which is already a big improvement over last year! 

Zoe seems happy with her teacher and class, which is also great news. But I have to admit that the start of the school year has been much harder than we all anticipated. Zoe looks so "normal" now compared to last year that I sometimes forget she is still on daily chemo and it's definitely taking a toll on her. She is absolutely exhausted after school and sometimes complains of headaches and being unable to focus. We keep reminding her to take breaks and to go to the office if she needs to lie down or wants to go home early, but she always pushes herself to keep going. We've told her teacher to also check in on Zoe, and I think that helps a little, but she still comes home so fatigued. She's also been feeling a little sad and left out because her friends have a lot of energy compared to her and they always hang out after school, but Zoe just can't keep up at the moment. She's so disappointed and sad at times; it really breaks my heart. But she is also very determined and when I ask if she wants to stay home to rest, she always refuses because she hated missing so much school last year and doesn't want to feel left out again. 

It's hard to find the right balance between letting her be the regular kid she desperately wants to be while also recognizing that she will have some limitations while still on treatment. For now, we just have to have patience, and show ourselves some compassion and grace. ]]> 2022-08-31 23:41:18 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2278419691 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2284928935 Hi Zoe,
I think this hedgehog is taking a cold bath because it's TOO HOT outside. I hope you're staying cool.
Hugs,
Sally]]> 2022-09-06 16:04:45 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2284928935 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2294314809 Hi Zoe,
During heat waves bees need a lot of water, just like we do, so we put out a bowl of water with gravel in it so the bees can drink. If we don't put the bowl out, the bees collect all over the chickens' water and the hens are too scared to go near it.
I'm really glad it's cooled off again!
Hugs,
Sally]]> 2022-09-13 13:41:00 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2294314809 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2303240927 Hi Zoe,
Have you heard of a donut sandwich? I thought it was a joke but apparently it's real, as you can see in this photo. I'm not sure how I feel about it but Simon thought it was tasty.

Hugs,
Sally]]> 2022-09-19 15:36:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2303240927 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2316693970 Hi Zoe,
Happy Fall! Brian and I just went to Madison, Wisconsin where we visited the Geology Museum. They had this wild looking fossil, which I adore. I'm especially fond of the sign.
Hugs,
Sally]]> 2022-09-28 02:49:20 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2316693970 Finding our Groove jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2321352744 9/30/2022

Zoe's been in school for a couple months now, and we continue to find our groove. We cut down on after school activities, which has definitely helped her get more rest and feel less fatigued. The doctors are STILL trying to figure out the correct dosage, so we continue to go to the hospital on a weekly basis for blood draws and monitoring. I think we're getting there, and hopefully in the next few weeks her labs will stabilize and she can stick with a consistent dose.

In the meantime, the rest of our family has been busy, busy, busy! Tom recently returned from two back-to-back business trips, Jordan has been busy with robotics and taekwondo, and Aimee's gearing up for more taekwondo competitions and choir performances in addition to all their schoolwork. It's pretty hectic these days, but we're grateful to be able to do the things that a regular family does without having cancer dominate our day-to-day lives. ]]> 2022-09-30 16:46:44 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2321352744 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2321442708 Hi Zoe,
I'm so excited to hear you're playing piano again! I started playing banjo a few years ago, and playing music is the hardest, best thing. I wish I had started playing when I was your age, but I couldn't sit still long enough to practice!
Hugs,
Sally]]> 2022-09-30 17:54:16 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2321442708 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2336156328 Hi Zoe,
Do you have a "happy place"? I like to go backpacking in the Sierra; that's my happy place. Here's a picture from my trip last week. I hope you're having a good time at school.
Hugs,
Sally]]> 2022-10-12 00:50:53 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2336156328 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2346079181 Hi Zoe,
We just got back from a trip to Lexington, Kentucky, where we saw this beautiful mural. I'm not sure I've ever seen so many amazing murals in one city; I loved it.
Hugs,
Sally

]]> 2022-10-19 00:39:53 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2346079181 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2355511703 Hi Zoe,

Q:  Why couldn't the pasta get into the house?

A: Because he had gnocchi!

It's almost Halloween; what will you be?
Hugs,
Sally]]> 2022-10-25 14:05:03 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2355511703 Walkathon jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2361327961 10/28/2022

October is always a super busy month for us, and this year is no exception! Aimee and Jordan turned SIXTEEN on Wednesday (driving tests are scheduled in about a month...eek!). And today Zoe participated in her school's walkathon. The goal for 5th graders was 35 laps, which is equivalent to 7 miles. There was no possible way she could do all that, I thought, and secretly hoped she could make it to 15. But, as is often the case, Zoe surprised us with her cheerful determination. While she was much slower than most students, she made slow and steady progress and for four hours she diligently walked her laps, with her sweet friends walking alongside her most of the way. To think that a year ago she was still in physical therapy and being fitted for orthotics to help her mobility, and now she is walking miles and miles on her own! She never ceases to amaze me.]]> 2022-10-29 06:53:00 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2361327961 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2365802612 Happy (belated) Halloween!

I love carving pumpkins, what about you? This year I pointed our jack o'lanterns into the house so we could see them glowing from inside. 

Hugs,
Sally]]> 2022-11-02 00:50:28 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2365802612 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2374185539 Hi Zoe,
We had a little crow invasion last week, with birds all over the house and yard. When I went out of the house I saw this fellow dangling by one foot from our oak tree. He stayed there for quite some time, pecking at the tree branch and nibbling on his free toes. Do you think he was playing?
Hugs,
Sally]]> 2022-11-08 02:21:10 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2374185539 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2385741986 Hi Zoe, 

Q: What gives you the power to walk through a wall?

A: A door.

Hugs,
Sally]]> 2022-11-16 00:55:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2385741986 Science camp and covid https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2390238043 11/18/2022

This week, Zoe went to science camp, which is a weeklong overnight camp in the Santa Cruz Mountains that she attended with her classmates. This camp is like a rite of passage for many 5th graders in the Bay Area. Aimee and Jordan had a blast when they went to camp, so Zoe has been looking forward to attending this camp for quite some time. 

I worked with her doctors, the school, and the camp staff for the past month to make arrangements and ensure we had a health safety procotol in place. The camp does not allow parents, but they let me go up to camp each evening so that I could administer her chemo and do a quick physical exam. Good thing I did, because when I went to see her Thursday night, I noticed she didn't look quite right and her temp was elevated (99.8F). I decided to pull her out of camp early, and when we got home, her temp had spiked up to 101.8 so we rushed over to Packard ER. Turns out she has covid, and after a long night in the ER, they decided she didn't need to be admitted, so we were able to come back home. 

She seems to be doing okay for the most part. Besides the usual covid symptoms (fever, sore throat, cough), she also has developed an infection around her eye, which is a less common covid symptom but more concerning because it may be bacterial, and that's what they are most concerned about. 

Not a fun way to end camp, but I'm glad we caught it when we did. Hoping she recovers quickly and that we can somehow manage to keep the rest of the family safe!]]> 2022-11-18 17:26:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2390238043 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2392786541 Hi Zoe,

I hope you're feeling better, and I hope you have a lovely Thanksgiving this week. Do you have a favorite pie? I like pumpkin.
Love and hugs,
Sally]]> 2022-11-21 15:28:33 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2392786541 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2402829194 Hi Zoe,
I hope you had a nice Thanksgiving and you're feeling better after covid.
I went to visit my family on the east coast and got to meet my sister's dog. Isn't he cute?
Hugs,
Sally]]> 2022-11-30 01:40:36 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2402829194 Hospitalized https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2407220556 12/2/2022

After about a week of fairly mild covid symptoms, it looked like Zoe had made a full recovery from covid with few casualties (I got covid and isolated with Zoe). Then a few days ago we noticed her temp was becoming slightly elevated but not enough to be alarming. That is, until last night when it suddenly shot up and we were told to go back to Packard ER for some bloodwork and antibiotic infusion. Everyone in the ER was pretty relaxed about it (including Zoe and me) because we all assumed it was probably some lingering covid symptoms and she had already been through the worst of it. But then the lab results came in and it turns out that Zoe's blood counts had tanked and she was severely neutropenic (ANC=0). It suddenly got a lot more serious then and she had to be admitted to the hospital so they can bombard her with non-stop antibiotics and antifungals while keeping an eye on her white blood cell count.

Because her covid PCR test is still positive, they've placed us in an isolation room in a different part of the hospital than the 5th floor oncology wing that we're used to. It's a pretty depressing space, made even more uninviting because of a negative pressure machine they've placed right next to our beds.

Zoe had a rough night with lots of shivering and night sweats. She woke up briefly in a pretty decent mood but then promptly fell back asleep and shows little interest in eating or drinking. She is being pumped full of meds as the doctors try to figure out what's going on (Bacterial/fungal infection? Other viral infection? Rebound covid?). In the meantime, we have to wait for her counts to start climbing before they will even consider discharging her. They said absolute earliest date would be Sunday, three days from now, but the way things look at the moment they don't think that's likely. 

Sigh. It's like you can never let your guard down with this cancer business.

Please keep Zoe in your thoughts and prayers. Hopefully, she'll be healthy and home again soon!]]> 2022-12-02 23:19:42 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2407220556 Inpatient Day 5 and Counting https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2411370318 12/6/2022
Still in the hospital with no straightforward answers and no significant improvements. They've tested for multiple types of bacteria and viruses, but nothing comes up except covid. She spends most of the time sleeping because of high fevers, but when they go down with Tylenol she is in fairly good spirits and able to eat and drink. Oxygen sats dip from time to time and respiratory rate is a little high but generally oxygen levels are good. Chest x-ray shows a bit of cloudiness but not enough for full blown pneumonia. She received a blood transfusion yesterday and may need a platelet transfusion. Infectious disease doctors came and are monitoring her in addition to oncology. They think she may have been reinfected with covid (either same variant or different variant), but for the reinfection she had no neutrophils because they were used up fighting her first covid infection, which is why this reinfection has resulted in worse symptoms. For now we will keep her on continuous antibiotics and antifungals. She may get monoclonal antibodies (Remdesivir) to treat covid, but her liver enzymes aren't the greatest (due to chemo, but she is currently on a chemo hold and hopefully liver function will look better soon) so they want to hold off on antivirals unless she needs supplemental oxygen.

In order to get discharged she needs to be fever free for 24 hours and her ANC has to get up to at least 200 showing an upward trend. As of now, she remains constantly febrile once Tylenol wears off and still has an ANC of 0, so I think we're going to be here for a while.

Thank you all for your kind words and continuous support. Please keep those positive thoughts and prayers coming!]]> 2022-12-06 22:57:53 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2411370318 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2411633601 Hi Zoe,
I'm sorry you're in the hospital. I have a joke for you:
I asked my friend to spell wonton backwards.
He said "Not now."
Hugs and Health!
Sally
ps. The picture is of a frozen puddle I saw this week.]]> 2022-12-07 03:58:52 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2411633601 Hi Zoey, look at these dragons I made. I really miss you. Love, Elody https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2413514279 2022-12-07 21:34:20 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2413514279 Inpatient Day 6 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2413715662 12/7/2022
I was so excited to share some good news today. Zoe woke up with no fever and the doctors gave us the great news that her counts were finally coming up! They said if she continued to be fever free for 24 hours and her counts improved even more by tomorrow, they would consider allowing her to be discharged by tomorrow evening. 

Zoe was SO excited, especially since she's been in isolation this whole time and can't leave her hospital room. Everything seemed to be going smoothly, but then around 2pm she developed a bloody nose. We're pretty familiar with bloody noses so we handled it in stride, even when it didn't stop using our usual methods. But then, about an hour into it, blood started pouring out of both nostrils and her mouth. It was coming out so fast and in large clots that she started choking on her blood and couldn't breathe. Both rapid response and ICU teams were called, and at one point our room was filled with 15 doctors and a crash cart. It was terrifying. They brought ENT into the room and after 2 hours they finally got it to slow down to a manageable leak. Thankfully, she did not have to go to ICU.

Zoe is doing okay right now, just exhausted, scared, and sad that this probably means more hospital time. Not sure what tomorrow will bring, but hopefully we are continuing in a positive direction, despite these bumps in the road.]]> 2022-12-08 02:03:12 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2413715662 leighperenna https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2413839045 Hi Zoe! I really miss you! I love hanging out with you at Landels and the rest of our friend group! Lots of love (and evilness), from Nutkin and Gabby!]]> 2022-12-08 04:22:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2413839045 I miss you (so does dobby!) https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2414499563 Hi Zoe,I really miss playing with you and hope you get better soon. Love, Piper♥️]]> 2022-12-08 15:42:15 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2414499563 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2415061410 Hi Zoey, this is a picture of Harley and Joker when they were kittens. Aren’t they cute! Miss you. -Elody]]> 2022-12-09 01:45:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2415061410 Inpatient Day 7 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2415161049 12/8/2022
I think we've turned a corner! After yesterday's dramatic events, Zoe was given a platelet transfusion, which helped stop the residual bleeding. She lost a lot of blood so they considered giving her another blood transfusion, but want to hold off and see if her body can start producing enough on its own (side note: Thank goodness she already got a blood transfusion before the nosebleed. If she hadn't, we would be in a very different, very awful situation right now). Zoe continues to remain fever free, and while her white blood cell count dipped a bit (current ANC is 300), they are confident that it is on the rise. So, if all goes well tonight and tomorrow's labs look good, they think she may be able to go home tomorrow! 

Zoe and I are so, so excited that we may be heading home soon. She will still be neutropenic and her doctors think it may be best to wait until after the holidays to go back to school. Regardless, it will be SO nice to be back home and sleeping in our own beds. 

Please continue to keep Zoe in your thoughts and prayers so that she will be healthy enough to go home tomorrow!]]> 2022-12-09 03:39:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2415161049 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2415286869 Hi Zoey, this is a picture of Harley and Joker when they were kittens. They were so cute. I miss you . Love Elody ]]> 2022-12-09 06:52:50 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2415286869 Home Sweet Home! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2416214576 12/9/2022
Zoe was discharged from the hospital today! Oncology, Infectious Disease, and ENT all signed off and said she was heading in the right direction so she can continue her recovery at home. 

There's still a ways to go before Zoe is fully recovered. She is still neutropenic and is coming home with a bunch of prophylactics (more pills...boo!) so that she will not acquire a secondary infection like pneumonia. She has also been on chemo hold since she was admitted, and Oncology wants her to start back up as soon as she is able but without pushing here counts down too quickly. So it will probably take a few weeks to adjust her chemo meds so that she is back on track with her cancer treatment. Because it will take some time to fully recover, it's unclear when she'll be able to go back to school and see all her friends. But at least she's able to relax at home and sleep in her own bed (me too!), and that is a huge blessing!

Thank you to everyone who has read these updates and sent words, drawings, and gifts of love and support. It helped Zoe so much to know that so many people cared about her and were cheering her on! THANK YOU!]]> 2022-12-10 04:47:17 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2416214576 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2419920719 Hi Zoe,
I'm so glad you came home from the hospital! I hope you're feeling better and getting stronger every day.
Hugs,
Sally]]> 2022-12-14 00:48:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2419920719 Recovering at Home https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2421999479 12/15/2022

It's been so nice to be back home sleeping in our own beds! From the outside, it looks like Zoe's recovery is going well. She still fatigues easily, but no more fevers, her appetite is back, and she has a lot more energy when she's awake. Unfortunately, when we went back to the hospital to check her blood counts, everything went back down for some reason and she is once again severely neutropenic. Thankfully, she does not have to be hospitalized again unless she gets another fever. However, this means that she is not able to go back to school for the rest of December, which we kind of expected but is still disappointing for Zoe. 

Her doctors also brought up a new worry for me. Now they seem concerned about fungal infections in her sinuses. They're worried because she has been severely neutropenic for so long, continues to have ongoing issues with thrush (probably because of all the antibiotics), and because her nose was tightly packed by ENT during her nosebleeding episode, creating an environment conducive to breeding fungus. They warned that if she does end up with fungus in her sinus cavities, the only way to remove it is through surgical debridement (the doctor described it as scraping fungus off her bones, which was not an image I wanted to picture!). So now I'm adding that to my list of things to stress out about. But for now, we stay the course and hope that recovery continues to go smoothly while her counts make their way back up. Come on, white blood cells! You've got this!]]> 2022-12-15 15:38:56 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2421999479 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2426278840 Happy Solstice!
December 21 is the winter solstice, the shortest day of the year and one of my favorite holidays. I hope you have lovely holidays with your family.
Hugs,
Sally]]> 2022-12-21 01:37:04 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2426278840 Happy New Year! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2434358082 1/4/2023

Happy New Year! 2022 had its ups and downs but was generally a good year for Zoe's treatment (if you ignore the previous month!). 2023 should be even better because it hopefully will be the last year of Zoe's treatment! Woohoo!

The holidays have been a nice and relaxing break for the family. We spent a mellow Christmas at home, then went to the clinic the following day to check Zoe's counts. Her doctor felt they were good enough to slightly increase her chemo dosing and also gave us the go-ahead to drive down to southern CA. It was so great to see family and enjoy a change of scenery, especially for Zoe who has been cooped up in either a hospital or our house for the past six weeks. It was a short visit because we had to head back to the hospital the following week, but we packed in a lot of fun activities and saw a lot of friends and family members, including friends we haven't seen since pre-pandemic days!

So far, Zoe continues to do well and they have scheduled her lumbar puncture for next week. It was originally scheduled for early December, but had to be postponed during her hospitalization. It is her last lumbar puncture where she will receive intrathecal chemo into her spinal fluid. That will be a big milestone and one step closer to the end of treatment!

]]> 2023-01-05 07:04:24 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2434358082 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2438662767 Happy New Year Zoe!
We just got back from New Zealand where we saw a lot of waterfalls. This one was particularly photogenic. I hope you had great holidays.
Hugs,
Sally]]> 2023-01-10 02:18:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2438662767 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2446135054 Hi Zoe,
When we were in New Zealand I learned that they call flip flops jandals. Apparently in Hawaii they call them slippers or slippahs, and in Australia they call them thongs or plakkies. Why so many names?
Hugs, 
Sally]]> 2023-01-16 23:48:14 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2446135054 Hanging in There https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2446294973 1/16/2023

Things are both great and kind of crappy these days. Great news is that Zoe had her last intrathecal chemo last Monday, which is a big treatment milestone. She was also able to go back to school after almost 2 months at home and so far seems to be doing well. She also had a playdate with friends over the weekend, and she was thrilled to spend time with them after so many weeks being stuck at home. The not-so-great news is that she had another emergency trip to the hospital when her massive bloody noses started up again. As a result, her blood counts keep tanking so she needs to go in for more blood and platelet transfusions. She will probably be scheduled for nasal cautery procedure in a couple weeks. She's had chemical cauterization done in the past and that wasn't too helpful so this time it will be more extensive laser cautery under general anesthesia. Hopefully it will work, but ENT worries that it won't be as effective because of her consistently low counts. There's been some back-and-forth between ENT and oncology teams (ENT: she needs higher counts or she might bleed out vs. ONC: she needs low counts or she might relapse). Hopefully, things will improve with the nosebleeds because dealing with this on top of all the cancer stuff is pretty exhausting.]]> 2023-01-17 03:58:17 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2446294973 Never thought I'd see this on her medical chart https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2452172031 1/21/2023
Unfortunately, Zoe's nosebleeds continue to get worse. She had to go to the ER once again on Tuesday and this time had to be admitted to the hospital to receive more platelet and blood transfusions. Then today she got another terrible nosebleed and ended up back in the ER, though no hospitalization or transfusions this time. Interestingly, this time around they packed her nose with cocaine because it is apparently a powerful vasoconstrictor and none of the other packing techniques were working. Never thought I'd see cocaine listed in her medical charts, but I guess at this point I shouldn't be surprised about anything!

We're at our wit's end. Zoe is scheduled for nasal surgery on February 17. They had to schedule it so far out because her ENT doctor wants there to be two attending doctors at this procedure due to her complicated medical history, and ENT is so busy that it's almost impossible to coordinate schedules. But given the increasing severity of each episode, I think everyone is getting really concerned and may try to push for an earlier date. They are also worried that her clotting factors look off, so they are running more tests and consulting with Hematology to take a look. 

During her entire cancer treatment, Zoe has been so positive and never felt sorry for herself. But all these awful nosebleeds are really beating her up, and today she sadly asked, "Why does this keep happening to me?" I really wish I knew.]]> 2023-01-22 06:17:22 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2452172031 Factor V Deficiency https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2455491780 1/24/2023
We are starting to get some answers about her nosebleeds. It turns out that Zoe has an acquired Factor V (five) deficiency, also known as parahemophilia. It is a rare blood clotting disorder that can result in excessive bleeding because her blood can't clot properly. They're not sure how she got it, but one suspicion is that it has something to do with getting covid while she was severely immunosuppressed. The disease is rare (1 in 1 million, with only about 200 cases documented worldwide) so there is no standard of care for treating this, especially in pediatric cases. But hopefully it is treatable and will eventually go away once chemo treatment is over. 

Until then, we have a plan in place to try and minimize the risk of major bleeding. They have moved her nasal surgery up to this Friday. To make sure she doesn't bleed out during the procedure, she is going in tomorrow for several units of platelets and fresh frozen plasma infusions. They will run more tests, and then on Monday she will see a hematologist who will come up with a course of action. 

Dealing with another serious disease on top of cancer is hard to take in, but I'm glad we have a plan in place. Please keep sending your thoughts and prayers that Zoe will come out of this okay. ]]> 2023-01-25 00:26:42 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2455491780 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2455511282 Hi Zoe,
Do you think this hedgehog knows he's being photographed? I think he looks a little surprised. I'll be thinking healthy, healing, nose-bleed stopping thoughts on Friday when you have your procedure.
Hugs,
Sally]]> 2023-01-25 00:55:49 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2455511282 Hi Zoe 🐇🦔 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2456296028 Hi Zoe we really miss you and hope you’re not too bored.
-Piper and Gwen ]]> 2023-01-25 15:19:25 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2456296028 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2456965442 Zoe, I really miss you and hope I you are doing OK. From Elody]]> 2023-01-26 01:13:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2456965442 Surgery Complete! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2459639073 1/27/2023
Thank you to everyone for your prayers and well wishes! We really hoped we could make it to Friday without another nosebleed, but unfortunately, Zoe got another major bleed a day before her procedure. We headed back to the hospital, and the doctors decided it would be best to admit her so that they could keep a close eye on her. She got more plasma transfused and had her nose packed again. Fortunately, she made it through the night without incident and was able to move forward with the nasal procedure. The ENT surgeon performed a nasal endoscopy and cauterized as much as he could. He felt he was able to get a lot of the active bleeders near her septum, which is great. He also did not find anything anatomically anomalous, so from a surgical standpoint, he feels confident they did everything they could to prevent major bleeding from her nose. After some observation and a couple more infusions, her doctors decided she looked good to go so that she could rest at home. Yay!

Now that the surgical side is complete, we have to do more medical intervention to get her blood clotting issues under control. As I mentioned, they have no standard treatment for what she's experiencing, so they are basing their treatment plan off a couple case studies they found having to do with covid and factor V issues (there aren't any pediatric cases, so it's pretty much based on studies of older patients in their 70s and 80s). The plan for now is to treat her with steroids (ugh), tranexamic acid (a coagulant), and more fresh frozen plasma. We go back in on Monday to check her labs, follow up with a hematologist, and will go from there. 

We're not out of the woods yet, but I feel a huge weight off my shoulders now that the nasal cauterization is done. Really hoping we got the major bleeding under control so we can take this weekend to rest!]]> 2023-01-28 05:32:02 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2459639073 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2462367938 I’m glad you’re home, I really miss you. I hope you feel better.]]> 2023-01-31 02:58:27 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2462367938 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2463207846 Hi Zoe,
I'm so glad you're home from the hospital! It's 30 degrees at my house this morning, the coldest I've ever seen it, but these flowers in my garden think it's springtime.
Hugs,
Sally]]> 2023-01-31 15:38:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2463207846 Cautiously Optimistic jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2463840687 1/31/2023
Yesterday's hematology appointment went well! Zoe's nose hasn't bled since the surgery and the meds seem to be doing their job in getting her clotting factors back to normal. Her latest blood tests showed that her hemoglobin and platelets are holding strong, and while her clotting results are still abnormal, they are slowly trending in the right direction. We will continue meds and go back next Monday (Zoe's birthday!) to see if her clotting factors continue to improve. She'll also have a post-op follow-up with ENT. 

Doctors gave her the go-ahead to go back to school, so today was her first day back! She was absolutely exhausted when she got home but said it was a pretty good day. It's amazing how resilient these kids are. Last week I was seriously considering pulling her out of school and homeschooling for the rest of the school year, but now she's back! She does have to take a ton of meds, but it's a small price to pay if we can just get a little normalcy back in our lives!]]> 2023-02-01 00:35:25 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2463840687 Happy 11th Birthday, Zoe! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2471162969 2/6/2023
Zoe is 11 years old today! It was a great birthday. Zoe's blood clotting factors continue to improve, and without the constant nosebleeds her hemoglobin and platelet counts have finally returned to normal. At the hospital today, she got a balloons, cake, a Lite-Bright toy as a present, and a card signed by her awesome medical team. After everything we've had to deal with recently, I'm so grateful that her birthday was a day filled with happiness and celebration!]]> 2023-02-07 04:31:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2471162969 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2471982381 Happy Birthday Zoe! I'm so glad you got to enjoy it!
Hugs + Love - Sally ]]> 2023-02-07 15:40:45 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2471982381 Silly Cat https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2472563923 Trooper hope you had a fantastic birthday!]]> 2023-02-07 22:55:17 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2472563923 Limbo jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2481070342 2/13/2023
Zoe had so much fun celebrating her birthday last week, but the joy has been somewhat tempered by more nosebleeds that started back up last Wednesday. Most are brief and very light, but there have been a few heavier bleeds (not enough to warrant an ER visit, thankfully), and they have been an almost daily occurrence. She went back to the hospital today for labs and a checkup, and it's unclear what's going on. She is doing much better than she was prior to surgery, but her numbers are heading in the wrong direction again. We're waiting for a few more test results to figure out what to do. Right now, the nosebleeds are a nuisance but manageable. I'm just really, really hoping they don't get worse.]]> 2023-02-14 07:40:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2481070342 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2482683628 Hi Zoe,

Q: What do you call a very small Valentine?

A: A Valen-tiny.

Happy Valentine's Day to you! I hope you're feeling alright these days. 

Hugs,
Sally]]> 2023-02-14 23:09:59 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2482683628 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2490264841 Hi Zoe,
Do you like Calvin and Hobbes? It was always my favorite comic.
I hope the bloody noses are staying away!
Hugs, 
Sally]]> 2023-02-21 20:45:34 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2490264841 Wait and See jennifyu https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2491578366 2/22/23
After last week's lab results, the doctors decided to put her back on her original high dose of steroids and clotting meds. They thought there might have been some kind of rebound effect from weaning her off the meds and that going back to the original doses would get her back on track. However, it appears that the meds have not helped. If anything, the numbers appear to be slightly worse. The doctors are stumped. They do still feel that her really severe factor V deficiency back in January was a result of covid, and that it was successfully treated with steroids the first time around. But the only explanation they have for what's happening now is that one of her chemo meds is causing her current factor V deficiency, which is still bad but not as severe. It may be that the deficiency has been there for a while (they don't typically test for it), or it may be more recently acquired because her body is just exhausted from all the chemo. They don't want to over-treat her, so they've taken her off the steroids and clotting meds for now since it doesn't seem to help with the underlying problems. As for the bleeding, as long as it stays a slow leak, they want to take a wait and see approach. They don't want to stop her chemo or lower the dosage because she already missed a lot of chemo back in December, and they won't know for sure if the deficiency is due to the chemo until she's finished with treatment. In the meantime, all they can offer are bandaid treatments, like more platelet, plasma, and blood transfusions if the bleeding gets worse, or possibly more cauterization. 

We're disheartened by the news and the fact that there is no quick and easy fix. It's hard to try and live a normal life if you are in constant fear of the next massive nosebleed that takes you to the ER. And even if the slow leak is not as scary, it's still uncomfortable and worrying for Zoe, who is constantly feeling a slow trickle of blood down her nose or spitting up little blood clots that go down her throat. End of treatment is currently set for end of May, and it can't come soon enough!]]> 2023-02-22 18:37:08 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2491578366 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2495563274 Hi Zoe!  Here's silly Trooper checking out the snow at the cabin.  He'd sink into that powder and disappear if we let him.  Sending the best thoughts to you. ]]> 2023-02-26 23:00:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2495563274 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2498423129 Hi Zoe,
I just went to visit my parents in Florida. They like to watch the sunset every night, and from this picture I can see why. 
I really hope the nosebleeds let up. You deserve a big ft break!
Hugs,
Sally]]> 2023-02-28 18:27:37 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2498423129 Holding Steady https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2505654698 3/6/23
It's been a few weeks since Zoe's been off the steroids and clotting meds, and it hasn't been too bad yet. She did have one substantial nosebleed last Monday that lasted several hours, with on/off light bleeding that lasted another day. We followed the prescribed protocol, which is to take one of the clotting meds (tranexamic acid) for five days and that seemed to work. She got off that med over the weekend so we'll see if things hold steady on the nosebleed front. 

In the meantime, we're dealing with covid, with Tom and Jordan both sick and isolating. Really hope it doesn't spread, especially to Zoe!]]> 2023-03-06 18:53:06 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2505654698 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2507026461 Hi Zoe,
Have you seen the snow on the mountains lately? I don't remember it ever snowing this often in the Santa Cruz Mountains. I heard parts of Tahoe have received 50 feet of snow so far! That's a lot of snow. 
Hugs,
Sally]]> 2023-03-07 14:46:41 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2507026461 Another Trip to the ER https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2514576583 3/13/23
Unfortunately, Zoe had another trip to the ER this weekend. Another nosebleed that kept going for hours, but this time much more heavily, which warranted a trip to the ER, much to Zoe's dismay. Labs show that clotting factors are getting worse and doctors don't know what to do. We are continuing with our protocol, which is clotting meds and transfusions. More doctor appointments this week. This is so frustrating.]]> 2023-03-13 14:57:56 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2514576583 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2517074209 Hi Zoe,
Today I hiked to a crazy waterfall (Alamere Falls) that crashes onto the beach in Point Reyes National Seashore. It was very windy and very rainy which made for a very exciting hike. Now I'm happy to be home, dry, and fed.
Hugs and love,
Sally]]> 2023-03-15 02:56:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2517074209 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2524696904 Hi Zoe,

This bunny was running around my neighbor's yard this week. We tried to catch him, but he was way too fast. He seemed to be living his best bunny life.

Hugs,
Sally]]> 2023-03-21 04:07:32 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2524696904 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2535148440 Hi Zoe,
I saw this sign on my hike yesterday; I guess people need reminders to pick up after their dogs? Very funny.

Hugs,
Sally]]> 2023-03-28 14:31:06 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2535148440 Love Hate Relationship with Steroids https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2535539111 3/28/23
It's been a lot of med tinkering the past few weeks. The clotting med was stopping the nosebleeds, which was a relief. But then it was working too well and started forming clots that were blocking up her port, so we had to stop using it. They have put her back on the highest dose of steroids and it is starting to work, so they are keeping her on this dose for the next several weeks. Steroids are a wonder drug until you have to stay on it for too long and then they are hell. So far, Zoe is tolerating it as well as can be expected but I'm really hoping they can start lowering the dosage before there are long term consequences. Doctors are particularly concerned about avascular necrosis of her hips and knees, so they are keeping a close eye on it. 

I'm feeling kind of blah about everything...too many ups and downs to feel hopeful anymore, so we're all just trying to appreciate these moments of reprieve from ER visits and never-ending blood draws.]]> 2023-03-28 19:14:46 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2535539111 End of Treatment BEFORE End of Treatment https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2544590749 4/4/23
Today was a weird day. Yesterday (Monday), Zoe went to the hospital for her weekly labs but unfortunately her port failed to draw any blood. This is the third time in a row we've had issues. They assumed there was a blood clot blocking her port so the nurse pushed a bunch of heparin and TPA to try and dissolve it but it didn't work. So we had to come back to the hospital this morning and try again. No luck after multiple attempts (and keep in mind each attempt literally takes hours, because it takes about an hour for pharmacy to bring up the TPA and then we have to wait another hour to see if it works). After about 5 hours of this plus some imaging to figure out what was going on, they decided the port was just getting too old and gunked up, which is understandable since she's had it for 2 years, 8 months. After some discussion, we decided to permanently take out the port and just use IV from this point forward. And, since she has to go under general anesthesia for the procedure, they decided she should undergo her end of treatment lumbar puncture and bone marrow aspirate at the same time, which are the final tests to determine if she is really cancer free at the end of treatment. But...it's not end of treatment yet! She still has 6 weeks to go and they actually increased her oral chemo dose today. I guess they just figured that at this point she's close enough to the end. So, two major end of treatment milestones are going to happen before the end of treatment! 

It was all unexpected, confusing, and a little overwhelming, but also really exciting. Definitely a lot to process. It wasn't until we were wrapping up that it occurred to me that this is the end of a lot of things. It (hopefully) will be the last time Zoe goes to the fastpod infusion center, the last time she will request the nurses give her the countdown before they poke her, the last time she has to put on her special port access shirts (she's not a fan of the shirts so we're pretty happy about that!). I'm a little sad that these last things happened without us really realizing that they were happening for the last time. But mostly I'm glad that we have reached these milestones and are moving that much closer to the end.

One happy coincidence did happen today: the first nurse that treated us when Zoe was first diagnosed and an inpatient back in August 2020 was the nurse who took care of us in the infusion center today. Her name is Jamie and she had recently switched from the inpatient floors to outpatient clinic. She instantly remembered Zoe and me even after all these years. And I instantly remembered her despite the dozens of new faces and the daze of those first days when Zoe was diagnosed. What I most remembered was a particular moment when I was trying to get Zoe to take her meds. At that time she was not used to taking pills and was already feels nauseous from chemo so she threw up all over herself, the bed, and me. I was alone with Zoe and had to use the call button to ask the nurse for help, and was cleaning up the mess when she came in. I was surprisingly calm at that moment, mainly because I was in shock, and while she helped me clean up she gave my arm a squeeze and told me I was doing great. She was probably just being nice, but it really meant a lot to me during those first few days when I didn't know what I was doing and how we were going to get through the next few years. So, to see her today was a nice full circle moment for me. We've all come a long way since then!]]> 2023-04-05 05:16:22 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2544590749 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2545507273 Hi Zoe,
I'm so excited for your impending end of treatment. I hope you're feeling good!
Hugs and love,
Sally]]> 2023-04-05 22:49:39 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2545507273 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2550185952 Hi Zoe,
I saw this track in the mud on a hike yesterday. I think it might be from a mountain lion.
Hugs,
Sally]]> 2023-04-11 13:42:20 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2550185952 Bye-Bye, Port! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2552516012 4/12/23
After almost three years, the port is out! We went to the hospital at 7am to pre-treat with IV meds and fresh frozen plasma so that she'd have plenty of clotting agents in her blood to prevent excessive bleeding during her procedure. Then we headed over to the surgical center where they took out the port-a-cath and also did her diagnostic lumbar puncture and bone marrow aspirate. The doctors noted that some scar tissue had formed around the catheter and vein, which explains why they were having a hard time accessing her blood through the port. Fortunately, they were able to take it all out without any issues and also did some extra cutting to smooth out the keloid scar that had formed on her chest when the port was first put in. Her bone marrow sample is being sent out to St. Jude for testing so results will take a couple weeks. This is the test to see if she has any cancer cells remaining. Last time they ran these tests was back in December 2021 when the results final came back with zero cancer cells. Fingers, toes, and everything in between crossed in the hopes that we'll see the same results again!]]> 2023-04-13 03:50:01 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2552516012 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2558635696 Hi Zoe,
I found a great spot for a wildflower walk; I'm hoping I can take you to see it soon!

Hugs,
Sally]]> 2023-04-18 13:47:42 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2558635696 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2567315586 Hi Zoe,
I'm so excited to see this native flower in my yard. It's called Baby Blue Eyes, and it's one of my favorites!
Hugs to you!
Sally]]> 2023-04-25 14:09:40 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2567315586 One is the Loneliest Number https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2570747077 4/27/23
Zoe's test results came back from her lumbar puncture and bone marrow aspirate. Multiple tests were run by St. Jude and Stanford and all of them came back negative except the most sensitive test, which can detect 1 cancer cell out of 1,000,000. And that's exactly what it detected. Once cancer cell from her bone marrow. As you can imagine, it was very discouraging news. But after talking with the oncology team, we feel pretty confident that she is still in full remission. They have said that this test is so sensitive that it is starting to detect "noise" that is not likely to be cancer. They've had a handful of other patients who have also had cancer cells show up on this test but remain in remission months and even years out. So we are going to stay positive and consider this full remission unless we are ever told otherwise.

Since all the other tests show that she is negative, they are going to end treatment as scheduled in about 3 weeks. However, her blood clotting factors also seem to have taken a turn for the worse, and so it is very possible that after they finish her cancer chemo treatment, they will have to switch to other therapies for the blood clotting issue, which, alas, involve more chemotherapy. It's not the same chemo that she has taken for cancer, so it's not clear how it will affect her body. We're not 100% sure we'll have to go that route yet, so we'll cross that bridge when we come to it.]]> 2023-04-27 17:51:23 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2570747077 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2575594622 Hi Zoe,
Isn't this a funny picture? It's the reflection of the sunrise off my banjo and onto the wall. I think it looks a little bit alive. 
Hugs,
Sally]]> 2023-05-02 18:09:13 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2575594622 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2584392369 Hi Zoe,
Q: What breed of dog do magicians own?


A: Labracadabradors

I hope you're feeling alright these days.
Hugs and love,
Sally]]> 2023-05-09 20:49:26 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2584392369 https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2594849867 Hi Zoe,
This flower is about 8" across - bigger than my hand outstretched! It's from South Africa but I saw it at the UCSC Arboretum.

I hope you're getting to enjoy the sunny weather!
Big hugs,
Sally]]> 2023-05-17 14:47:24 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2594849867 End of Treatment! https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2600933860 5/22/23
After nearly 2 years and 10 months we have finally made it to EOT...end of treatment! Zoe took her final chemo pill (6MP) last night and went to the hospital today for her bell ringing ceremony. When Zoe walked out of the clinic, there was a line of nurses and doctors that were outside clapping and cheering her on. It was beautiful! I loved seeing how Zoe's face lit up, and have to admit that I got pretty teary-eyed as we thanked everyone for supporting us through all the ups and downs of treatment. Best of all, Aimee and Jordan were able to join, which is the first time they have ever been to Packard! After the ceremony, Zoe was so proud and excited to give her siblings a tour of the hospital. It was a little surreal and very special to have us all together in the hospital that had been Zoe's home away from home these past few years.

There are still more hurdles to overcome. Zoe's blood clotting issues remain, and we continue to treat her with high dose steroids and all the complications that come with it, including avascular necrosis of her joints, ongoing fungal infections and, most recently, steroid-induced diabetes. But we have come SO far and have so much to look forward to in the coming weeks, months, and years. Words simply can't express how incredibly proud we are of our amazing girl!

This padlet was started in August 2020 as a way to communicate Zoe's progress and for Zoe and our whole family to feel the love and support from her friends and family. So it seems fitting to end the padlet now that we have reached the end of treatment. THANK YOU to all those who have shown us so much love, prayers, and constant support throughout this cancer journey. One chapter has closed, but there are certainly many more exciting ones to come, so please stay in touch.

With love and gratitude,
The Li Family]]> 2023-05-23 02:42:54 UTC https://padlet.com/jennifyu/40ll09bejp6p8lp1/wish/2600933860