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Celebrating at Zoe's bell ringing ceremony!

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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

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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

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Hi Zoe,
Q: What breed of dog do magicians own?

A: Labracadabradors

I hope you're feeling alright these days.
Hugs and love,
Sally

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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

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Zoe preparing a delicious dinner for the family

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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.

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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

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Hi Zoe,
I found a great spot for a wildflower walk; I'm hoping I can take you to see it soon!

Hugs,
Sally

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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!

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Hi Zoe,
I saw this track in the mud on a hike yesterday. I think it might be from a mountain lion.
Hugs,
Sally

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Hi Zoe,
I'm so excited for your impending end of treatment. I hope you're feeling good!
Hugs and love,
Sally

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Quite possibly our last day in the outpatient infusion center!

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End of Treatment BEFORE End of Treatment

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End of Treatment BEFORE End of Treatment

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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!

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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.

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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

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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

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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

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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.

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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

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Enjoying a yummy strawberry cupcake that Zoe baked and decorated.

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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!

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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

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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.

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Throwback photo from Zoe's kindergarten days

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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!

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Hi Zoe,
Do you like Calvin and Hobbes? It was always my favorite comic.
I hope the bloody noses are staying away!
Hugs,
Sally

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Scannable Document on Feb 21, 2023 at 12_43_09 PM

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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

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Enjoying some birthday pie at a friend's house

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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.

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Trooper hope you had a fantastic birthday!

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Happy Birthday Zoe! I'm so glad you got to enjoy it!
Hugs + Love - Sally

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Celebrating Zoe's birthday with the Packard staff.

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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!

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SO. MANY. PILLS. (and this is just her evening meds!)

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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!

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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

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I’m glad you’re home, I really miss you. I hope you feel better.

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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!

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Zoe, I really miss you and hope I you are doing OK. From Elody

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Hi Zoe we really miss you and hope you’re not too bored.
-Piper and Gwen

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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

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In between transfusions and ER visits, Zoe managed to get in a few days at school. Here she's enjoying a salad they made during a Living Classroom activity.

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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.

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Never thought I'd see this on her medical chart

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Never thought I'd see this on her medical chart

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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.

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Enjoying some outdoor ice skating during a brief respite from the rain.

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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.

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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

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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

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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!

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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

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Zoe thankful that she doesn't have to eat any more hospital food!

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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!

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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

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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!

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Hi Zoey, this is a picture of Harley and Joker when they were kittens. They were so cute. I miss you . Love Elody

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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!

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Hi Zoey, this is a picture of Harley and Joker when they were kittens. Aren’t they cute! Miss you. -Elody

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Hi Zoe,I really miss playing with you and hope you get better soon. Love, Piper♥️

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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!

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Zoe this morning, before things went downhill

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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.

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Hi Zoey, look at these dragons I made. I really miss you. Love, Elody

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Hi Zoey, look at these dragons I made. I really miss you. Love, Elody

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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.

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Zoe using an incentive spirometer to help with lung exercises

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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!

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Very cumbersome and loud negative pressure machine inconveniently placed so I have no room to sleep.

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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!

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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

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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

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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!

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Hi Zoe,

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

A: A door.

Hugs,
Sally

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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

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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

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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.

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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

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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

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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

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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

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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.

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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

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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

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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

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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

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Zoe hanging out by the train display at Packard Hospital after one of her weekly visits.

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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.

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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

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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

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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

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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

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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!

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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

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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

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Zoe got to see Harry Potter and the Cursed Child in SF and LOVED it!

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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.

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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

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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

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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

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Hi Zoe,
Q: What do you call a snowman in July?

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

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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.

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Enjoying a family picnic before we realized Zoe was neutropenic.

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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.

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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

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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!

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Solving the Rubik's cube while waiting for her lumbar puncture.

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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!

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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

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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

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After a 2-year hiatus, it's back to our annual strawberry picking tradition!

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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!

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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

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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

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Zoe enjoying some sticker art while she waits for her chemo

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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!

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Hi Zoe,
Here's a flower I saw when I hiked with your mom last week. It's called Cardinal Catchfly.

Hugs,
Sally

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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.

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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

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Stirring up ingredients for nutella ice cream during homeschool "cooking class."

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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!

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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

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Zoe was the only one in the family who didn't seem to mind running barefoot in the frigid ocean waters!

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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!