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Without a match in the registry, Theo was selected to be the donor.  We would still invite you to encourage everyone to join the registry.  There are plenty of people in need of a match.

Feb. 23, 2021

Zoe loves to go for walks in the hospital hallway. She started falling more often a couple days ago while running, then we realized yesterday it was a significant increase of falling while walking, and today she can’t even walk properly for very long. They’re going to do a head CT scan to look for a neurological cause, physical therapists are going to look for muscle weakness, and it could be her meds too with a variety of causes. 

Her CT scan and echocardiogram came back normal. 

Feb. 19, 2021

Zoe’s oxygen level without support has been slowly declining, so she’s on a lot of oxygen now, especially when she’s sleeping. They found some fluid in her lungs too. She has some very painful moments but also some very pleasant periods. She’s already more comfortable than the first 24 hours after her heart operation.

The initial lab results for her day 100 cancer presence test show no leukemia in her blood marrow, and the big one, the DNA test, will be back next week hopefully.

Her effusion hasn’t slowed down, and they’ve drawn about 250mL from around her heart now. 

Feb. 17, 2021

During her procedures today they discovered fluid buildup around Zoe’s heart, which could be very serious. So Zoe will be staying at the hospital for the foreseeable future, and they’ve scheduled an operation to begin ASAP this afternoon to insert a drain to help her heart. She’s going to end up staying sedated for the entire afternoon.

Zoe has a large pericardial effusion. They don’t know what’s causing it yet: they’ll test the fluid. Her heart operation is early tomorrow morning. 

Feb. 15, 2021

Pray for Zoe’s stomach to be at peace. She couldn’t keep food supplement down today, and her throwing up came out her nose and hurt a lot and made her tube keep coming out and sometimes she couldn’t catch her breath. She has to do such hard things. 

Jan. 14, 2021

The rest of Zoe’s test results are back now. The deep-dive genetic test came back “weakly positive,”  indicating a near-zero presence of leukemia and the mutation that causes it. We’re very disappointed her leukemia is still present, but they said it’s very likely that the next time they run the test (at the end of February) the results will be negative, so not to worry. Her cellularity test results were beyond excellent: she scored 70% when most transplant patients have less than 30% at Zoe’s stage. Cellularity refers to how much space in the inner marrow is filled with healthy, living cells, as opposed to just fat. And the bone marrow biopsy showed 100% donor DNA in her inner marrow, another perfect chimerism score. So Zoe’s marrow is doing very well, but declaring her in remission has been pushed back another couple months. We really want that day to arrive.

Zoe is also starting daily oral chemo again today, which will continue for most of the year, to decrease the risk of recurrence. 

As the transplant’s effects continue to work, it should eliminate the cancer-causing mutation. It often takes some time. The daily chemo is to reduce the risk of the mutation occurring or spreading.

Synergy, it appears 

Jan. 8, 2021

Zoe’s at the hospital because she’s had frequent diarrhea and increasing pain since last night. That’s in addition to her daily vomiting, so they’re worried about dehydration and the cause. 

Late night update:

They got to come home. They think Zoe caught a stomach bug, and she’s on IV fluids tonight. 

Dec. 23, 2020

Dec. 18, 2020

Zoe’s liver tests improved by a huge degree today. Her liver is almost back to healthy normal, so she’s stopping her liver drugs a week early. Now she needs to be able to pee without the two heavy-duty diuretics she takes every day, and be able to keep adequate amounts of food down, and she’ll be able to leave the hospital. 

Dec. 15, 2020

No big changes with Zoe. She’s having moments of comfort and moments of nausea. She supported her weight on her legs again today for a couple seconds. Her swelling, liver, and kidneys have stayed about the same. She’s communicating and talking more, but she’s still a far cry from her normal baseline. 

Dec. 9, 2020

From Theo:

Zoe was finally negative fluid by a significant amount today, meaning she expelled more than she received. Her new diuretic is helping, and she doesn’t need blood transfusions as often. First her swelling lessened enough to see her eyelashes again, then by this evening she could open her eyes and look around when she felt like it. Her abdominal girth hasn’t decreased yet though. Her lungs worsened a bit: there is more fluid in the bottom of her lungs today. Her kidneys are still barely functioning. Last night was the first night she didn’t fever, and if that repeats then she can stop antibiotics. Her neutrophil (infection fighting WBC) count is in a normal range now! She smiled again today and has been more awake. She’s comfortable enough to move from lying still on the bed finally, and she’s been loving snuggling on her mom again. 

Dec. 8, 2020

From Theo:

Zoe has gained 10 pounds in fluid retention in the last week, 50% of her body weight before that. She’s still gaining more every day, causing extreme discomfort and pain. Her face is so swollen she often couldn’t open her eyes if she wanted to. They checked her heart today, and it’s doing fine. They also checked her muscles, and they’re healthy and strong. Her lungs are still impaired. She smiled once today, that’s twice in three days, and we’re grateful for that.

The fluid problems are caused by a variety of complications, not just the VOD. But as time goes on it becomes more likely the swelling will resolve. 

Dec. 6, 2020

From Theo:

The transplanted stem cells have engrafted. She has a fever over 101F. An X-ray showed Zoe’s lungs are full of something “murky,” probably mucus or fluid, and they aren’t expanding all the way. Her kidney is still hanging in there without dialysis. Her liver function has improved according to labs, and she finally has slightly negative fluid (draining more than receiving) but not enough to lessen her serious body-wide swelling yet. You couldn’t tell anything’s changed by looking at Zoe: she’s still completely miserable and fighting to breathe, but many underlying indicators are setting the stage for an eventual recovery. And today she smiled once. 

Dec. 3, 2020

From Theo:

Zoe’s WBC is up to 0.2, double from yesterday, which is a good sign because chances of successful transplant rise with her WBC and ANC blood counts. But a resurgent immune system could also trigger graft vs host disease (GVHD), which would be extra dangerous if that occurs before she’s done dealing with her liver and kidney issues. Her abdomen is still swelling despite constant draining from her abdomen catheter. Her heart rate is lower today, which is a very comforting sign that there is less stress on Zoe’s lungs and heart. Her kidneys and liver are barely functioning, but we’re grateful they are functioning, and she doesn’t need dialysis yet. Breathing and oxygen are still a difficult area for Zoe, but she is in attentive hands. She is more awake today but more vocal about discomfort. It takes about a week for defibrotide to start reducing liver problems, so the goal is to keep her organs stable for the next week. Improvement is not really considered a possibility for now. She can still raise her arms, drink water from a straw, and say “mom” and “dad” on her own.

Photos from last week:

Dec. 1, 2020

From Theo:

Zoe’s going to the ICU. She has fluids in her lungs. Her kidney and liver function are still declining. Her chest is swelling now. 

From Theo, afternoon update:

There is a path towards recovery for Zoe. She’s going to stay in the ICU permanently. They’re going to insert a tube into her chest to drain fluid and the pressure on her lungs, and another tube in her abdomen to drain her liver. They will also probably insert a line for dialysis. They expect the VOD, and her condition, to get worse before it gets better. The TMA tests came back negative, and her hemoglobin bounced back up, so they think it was an unexplained one-off that made that dip, which is fantastic news. Her platelets have been increasing incrementally in the last twelve hours, which is also a good sign. They’re at 19 now, and once they hit 30 she can start the drug that will really combat VOD. More good news is her liver and kidney problems won’t delay or impair transplant engraftment, and successful engraftment will help those organs resolve their problems. Her overall condition is still critical, with shallow, labored breathing on oxygen assistance, constant fever, violent nausea, and a swelling, hardening abdomen. The poor girl can go hours now without moving or focusing her eyes, although she is aware enough to ask for her parents to hold her hand. It’s now a race to mitigate her lung, kidney, and liver symptoms to give her blood and marrow enough time to recover.

Nov. 30, 2020

From Theo:

She’s been stable since this morning, keeping a close eye on oxygen and fluid balance. She needs to get her platelets to 30 before she can start treatment for VOD. They were up to 12 today. They think Zoe’s other complication is TMA, where blood clots make her arteries too small for hemoglobin to pass through unharmed, and it’s causing her hemoglobin to tank (<4). She’s sleeping a lot, so we’re just waiting for her body to heal and work through these (with the help of 10 IV lines). 

From Theo, later tonight:

Her abdomen keeps getting bigger, and her blood counts won’t go up. She’s not really smiling anymore, so that’s a telling sign of big overall changes in how she feels. We just have to wait and see if her body heals. 

Nov. 29, 2020

From KM earlier today: 

Zoe’s weight is still up and liver is harder/more swollen. They’re calling it and saying this is VOD. They’re having Zoe get a PICC ASAP. Should be sometime early afternoon. They’ll start the platelet drip. Last night was rough. Lots of waking and throwing up. She has new sores in her mouth and her vomit was pretty bloody from her throat. Plus she had fevers on and off all night. The idea is to finally start some IV narcotics and help alleviate some of the pain. They want to put a temporary IV in her hand because she’ll have no line space for stuff that needs to be done before her procedure. And I can’t nurse her because she needs to be sedated for the procedure.

Zoe has 8 lines that go into a chest port. The PICC line they are putting in is for more lines . This will make her less mobile too. Through this sorrow count me as one who remains hopeful. ️

Follow up from Theo later in the day:

It’s been a chaotic morning. Zoe was nervous about her surgery, then right after that they wheeled her to an ultrasound, then when we were returning to her room we noticed she was bleeding out of her PICC line and an ear. So we held her while a nurse held gauze on her bleeding, and other nurses worked to get all 8 of her lines working. It was quite the scene. Then I read books to Zoe while she sat in bed next to her sleeping mother. Then Zoe fell asleep too, and all is calm now. 

Another follow up later, from Theo:

Treatment for VOD will include a drug Zoe starts tomorrow that administered every day for 21 days usually, depending on recovery. We’re extremely disappointed that the hospital stay will definitely be extended beyond a month, but we were warned complications are common. They are going to keep a close eye on Zoe’s fluid balance, because VOD can cause internal flooding. They said the fact that Zoe doesn’t need oxygen is a great sign, and it’s a good sign that the VOD developed a couple weeks after transplant as opposed to immediately after. Zoe’s WBC is still at 0, and we are anxiously watching that, because increases will be a sign the transplant was successful. The normal window when that would happen is December 2-9. 

Zoe’s temperature is back to normal, the lowest it’s been for a couple days, so that’s nice. Zoe still has just the most brutal nausea and gagging. She spent most of the day on her bed nestled in fluffy pillows, animals, and soft blankets. She has about 12-15 lines, tubes, and wires attached to her at any given time, but she is still smiling a lot when she feels better.

Oh and her heart rate is still always sky-high. Poor thing.

Nov. 28, 2020

From Theo:

Zoe has given us some scares today. She’s had tachycardia (abnormally fast heart rate) since this morning, and got a fever that was going up fast, but both of those things have plateaued or dropped a bit this afternoon. But her platelets are still being used faster than they can transfuse them. They can’t get them higher than 4 or 5 with constant blood bags. She has spent a lot of time snuggling with her mom and dad today though. 

Nov. 26, 2020

From Theo:

Zoe has an enlarged liver and elevated enzymes, and after a lot of bloodwork and an ultrasound they think she’s in the beginning stages of VOD, a liver disease. Her platelets are very low (<10) and keep getting used very quickly by something, so they keep giving her more to reduce bleeding. She hasn’t been able to safely take food supplement down her GI tract for a couple days now, and she’s nursing less, so the IV nutrition is keeping her afloat. Her pain meds are constant, she never seems to get comfortable. But she is still able to occasionally enjoy activities, like stickers or watching animals or choosing books to read. She can also still support her weight and stand when she wants to, which is nice to see. 

Nov. 23, 2020

From Theo:

Her fever is gone, it was just a body reaction to treatment. Her side effects have begun. She started pain meds this morning, but the mucositis isn’t severe yet. She has violent and constant nausea. She’s still comfortable enough to run around and play, but spends more time in bed.

Her white blood cell count is around zero now. 

Nov. 18, 2020

From Theo:

The transplant was fairly quick, done within an hour. It was slightly unpleasant for Zoe, but she’s doing fine now. The next two weeks is when she will become extremely sick, and we will be able to see the effects on her blood. Kirsten-marie and Zoe are so strong.

From Grandpa Stephen:

I wanted to get a quick update on here tonight.  I know a lot of people have been following Zoe's adventure.  I, we, thank you all for your love and kindness.  Many of us were inundated today with messages of support.  May all of us feel peace and hope for the future.  Zoe strong!

Aug 27, 2020

From Theo:

Zoe’s cancer levels are a tenth of what they were in May, down to 0.03 from 0.25. That’s great news because the chemo is still working. Unfortunately, it’s best if the cancer is undetectable before transplant. Zoe’s doctor is going to speak to the transplant team then call us back to discuss the next treatment plan. It will either be up to 2 months of light chemo in hospital for 4 days every week until the cancer is low enough, or 1 month of heavy chemo in hospital. Either way, it’s pushing out the recovery timeline much farther on the calendar.

July 21, 2020

From Theo:

Zoe woke us up at 2:30 am last night with two big vomits, and she felt hot and had a temperature of 101.4, so km and Zoe were at the hospital until 4:45 so they could run infection and blood tests.

They think it was just a reaction to starting up all her chemo treatments again.   The doctor said her blood count was so high that if it was an infection her body was capable of fighting it off on it's own.  She is doing better now. 

July 16, 2020

From Theo:

Pray that she will sleep soundly throughout the night and her blood counts will recover so she can continue treatment. Thanks

July 9, 2020

From Theo:

Zoe’s numbers still aren’t high enough, so she’s meeting with her oncologist Monday to decide on what the new treatment plan will be. She’s been off her phase 2 chemo for two weeks now, but her white blood cells have actually been decreasing during what was supposed to have been a recovery period, so something is not working properly in her bone marrow. White blood cell count fluctuations are normal during recovery periods, but she may have to temporarily stop dasatinib, which has been keeping the leukemia in check. Either way her treatment schedule is getting pushed back by about a month.

July 6, 2020 

From Theo:

They realized one of Zoe’s numbers wasn’t as high as they thought, so they didn’t go to the hospital today. On Thursday they’ll check her blood again. And she threw up everything in her stomach this afternoon. But she is climbing and walking around holding on to things and having a good day.

July 5, 2020

From Theo:

Zoe is cruising again! She walked back and forth on her own while holding on to the couch several times today.

 And her blood numbers are high enough today that she’ll resume her other two chemo drugs tomorrow.

June 26, 2020

From Grandpa Stephen

It has been a pretty good week.  Zoe is playful and starting to walk and stand, with help.  She is scooting around a lot and playing independently.  She is half way through her second round of chemo.

While this round is less disruptive to her, it still has its consequences.  She seems to have lost her appetite and does not eat as much.  They have been advised, and followed it, to increase her tube feedings.  This is a prepared smoothie that is pushed through her NG tube, directly into her stomach.  Her teeth seem to be bothering her as well.  She is teething and there are several starting to break through.  

They do have a little piece of heaven in their borrowed housing.  It is fun to watch Theo and Kirsten and Zoe playing and laughing together.  

"Cancer free Christmas!" is often exclaimed, but I pray and hope that it is sooner.

June 22, 2020

From Annett, on Fathers' Day

Definition of “miracle”: An extraordinary event manifesting divine intervention in human affairs or an extremely outstanding or unusual even,, thing, or accomplishment. Miracles can happen everyday without us even noticing.  This is a miracle I have witnessed every day for the past two months. I believe there is definite divine intervention as a God works through Zoe’s parents. Many of the things I’ll mention here KM also does. But since it’s Father’s Day, I’m focusing on Zoe’s father. Theo is a self-made miracle because he on purpose makes choices to be who he is and do what he does and then he’s in a place where God is using him to bless Zoe.  Here are some of the things that can seem ordinary to some but extraordinary to others, especially when you think in terms of cumulative.

Theo:

-Responds kindly to the relentless inquiry of others.

-Does research constantly to learn and understand leukemia and all that goes with it.

-Carries the financial burden. Multiple calls to insurance to get Zoe’s care covered. Figuring.

-Trip to Minneapolis to move out of apartment and move belongings into a storage unit.

-Playing with Zoe every chance he gets.

-Trying to relieve KM of the constant care Zoe needs.

-Giving a priesthood blessing to Zoe just seconds before one of that blessing’s purposes was needed.

-Changing diapers, putting on butt cream, applying anti-itch cream.

-Cleaning up puke and diarrhea.

-Administering many medications, multiple times a day and at various times of the day. Keeping it all organized and properly handled.

-Flushing Zoe’s PICC line.

-Shopping

-Driving to and from hospital

-Watching Zoe vigilantly to be sure she’s safe, doesn’t pull out PICC line, doesn’t hurt herself (this is a concern with low platelets), doesn’t pull out ng tube, etc

-Blessing Zoe

-Filling out forms and sending them.

-Gently holding, kissing, and giving love to Zoe.

-Talking on the phone for all sorts of care for Zoe’s needs.

-Explaining multiple times about cancer to the never ending questions of others.

-Always speaking positively to Zoe.

-Explaining to Zoe what is happening.

-Telling his baby girl how much he loves her.

-Patient with others as they visit and care for and play with Zoe.

-Reads to Zoe 

June 17, 2020

From Stephen (Grandpa):

Zoe had a little break between chemo treatments and has obviously been feeling better.  Her happy personality was back.  She was playing, laughing, exploring and more engaging.  She would leave her mother and go to others to play and dance.  For the first time in months she went to sleep without Kirsten having to remain by her side.  It was a short reprieve, however, as this week she started her second round of chemo.  It is supposed to be less taxing on her. 

We are also grateful for the kindness of others.  They had to find new housing and the Ronald McDonald house is closed.  However, the Ronald McDonald house did find them housing.  They have settled in and our creating a temporary home.  So every chance you get to make the small contribution of your change at restaurant, we so go for it. 

June 7, 2020

From Annett:  The Unnamed  Miracle

Exactly one week ago Zoe was taken to the ER. We weren’t sure what was causing her troubles.  The doctors didn’t know either, so Zoe went back to Primary Children’s Hospital.  After many tests and observations, doctors still do not know what actually caused Zoe to have a rash and rapidly decreasing platelets. But what we do know is that she’s doing better.  And some of the chemo side effects are dissipating. Her rash is disappearing. The sore under her tongue is gone. She’s happy and playful.  Her skin is healing.  She’s moving her legs and arms and whole body much more than in the past three months—since coming to Rexburg. The fact that today she scooted on the floor to get where she wanted to go was significant. We haven’t seen her do this since March. Something is going absolutely right with Zoe. I like to give God credit for all good things.  But since we don’t really know what caused so much good in Zoe, the miracle remains unnamed.” 

June 3, 2020

From Theo:  Zoe is out of the hospital today! (June 2) But she has to go back tomorrow or the next day so they can keep a close eye on her. Zoe’s red rash all over her body has improved slightly, her petechiae rash hasn’t changed, she has more scratches and bruises but they aren’t as inflamed, her sores on her back and in her mouth are bigger, and her platelets are dropping more slowly now despite the doctors not knowing why they dropped so fast, but most importantly Zoe is feeling very good today. So overall a mixed bag. Zoe looks worse but is acting like she feels much better. 

From Annett:  Miracle reminder: Zoe is the miracle. Through sores on bottom and in mouth, itching and scratches on skin, bruising all over, and discomforts (maybe pain) we don’t know about, she still smiles, laughs, and plays.  She’s even let her dad take her now and loves it! She's adorable and wonderful! 

May 31, 2020

From Theo:  Bad news

Last night at 9pm Zoe had two big vomits, so we turned on the light and noticed dark spots spreading over Zoe’s abdomen and thighs, so we went to the nearest ER, where they took lots of Zoe’s blood for tests and made sure she was stable. After three hours of that, we had to drive Zoe to Primary Children’s to be examined by a doctor there and given blood transfusions. Turns out Zoe’s platelets (blood cells responsible for clotting) had decreased abnormally fast in the last few days to a dangerous level. When your platelets get as low as Zoe’s was, “spontaneous bleeding” starts to occur throughout the entire body, as well as any cuts to the skin will never stop bleeding. The spots we saw, called petechiae, were because blood was leaking, causing spontaneous bruising 

We were all set to leave the hospital this afternoon, just waiting for an oncologist to check Zoe (the doctor at the ER and when we arrived last night that saw her were not oncologists), because they gave her platelets throughout the night to fix the problem, or so we thought. But when the oncologist saw Zoe she said her petechiae was worse than it should be, and there may be something more serious going on than just Zoe got low on platelets, so they were going to keep Zoe overnight. We could tell the doctor was worried and surprised when she examined Zoe, so that made us worried as well. Sure enough, after that they checked Zoe’s blood count again, and found that her blood numbers were plummeting unbelievably fast. To put it in perspective, Zoe’s platelet count was 22 on Thursday (already low) and had dropped to 8 last night when we took her to the ER, and a drop that fast was a bad sign. Well last night they got her platelets up to 90, but when the oncologist checked again just 6 hours later this afternoon it had already dropped to 40. A drop that big and that fast is a very bad sign. Since then they have had three more oncologists look at her, and the infectious diseases team and dermatologists look at her and work on her case as well. They’re taking a skin biopsy, checking liver and kidney function, doing swabs and cultures for possible viral, bacterial, or fungal infections, using ultrasound to check for clotting disorders, and temporarily stopping her daily chemo dose. Her general red rash as well as various bruises and wounds are getting worse and more inflamed, and now she’s going to stay in the hospital until further notice, because her condition is declining so rapidly. It’s such a huge roller-coaster of ups and downs after the good news earlier this week. 

May 29, 2020

From Theo:  Good news

Really good news today. Zoe’s doctor called to tell us the results from her bone marrow biopsy and bloodwork earlier this week show that her ALL leukemia (ALL is the type of leukemia, not to be confused with all the leukemia in her body) is in complete remission (not a single cancer cell in her entire body). The “A” in ALL stands for acute, because ALL spreads very quickly. So Zoe’s “blast crisis” is over, leaving the CML leukemia. Good news there too: the myeloproliferative disorder in her bone marrow that makes the CML leukemia cells (too many immature white blood cells) has slowed down sharply since Zoe’s treatment began, and she is starting to produce normal blood cells on her own again. The doctor said these results are the “best news possible,” “better than his team had even hoped for,” and “cause for celebration.” He said eliminating acute blast crisis cells is the most difficult part of beating leukemia and the degree to which the blast cells responds to treatment indicates how well patients will do in the future fighting other parts of leukemia, so the fact that she is in complete remission after just four weeks of treatment suggests that the rest of her treatment will be very effective. She will be doing another month of chemo though to make sure that the drugs are completely thorough at shutting down the leukemia. The next month of chemo starts June 8 and will be much easier on Zoe’s body: fewer drugs, smaller doses, and no steroids (the worst part). The next month will also be a sort of recovery time for Zoe’s blood, since improved blood numbers raises the chance of surviving the transplant. After that round of chemo, they will check whether she needs another month, but based on today’s results there’s a good chance she can proceed directly to a transplant at that point, which takes about 10 days to prepare for once it’s scheduled. So the quickest scenario would be a transplant mid-July, and with the 100 day minimum recovery time, that would be around Halloween that Zoe could leave Salt Lake, in the smoothest and fastest scenario.

May 26, 2020

From Annett:   A Day In The Life Of Zoe

8:30 get up, change diaper, eat hummus, suckle, KM moves Zoe’s feet and legs (to help circulation and muscles)

Zoe carries around a painted rock that says “Save Zoe” and “zoesmith.org”

Poopy diaper change twice in a row, diarrhea that is painful

Eats off her mother’s plate beef cabbage carrot stir fry

Zoe asks for Theos’s fried egg by pointing and making her baby sounds. She eats it.

Zoe tastes Kirsten-Marie’s (KM) green smoothie

Diaper change

Zoe gives her stuffed ladybug a kiss and hug

Theo flushes Zoe’s PICC line (this is a port on her arm where medicine is given her at the hospital), suckling

Theo gives her 4 medications through her ng tube (this is a tube that goes in her nose and down her throat to her stomach), suckling

10:00-10:40 KM does an online Sunday School class with 11 year olds to fulfill her calling while holding Zoe on her lap

Zoe is always with her mother, on her lap, next to her when they sleep, next to her (touching) when they play on the floor with toys.  (If KM leaves her she cries.)

10:30 Theo gives Zoe a food supplement through her ng tube. Suckling, KM moves Zoe’s feet and legs

As best we can tell (from a little one that doesn’t speak words yet) she gets nauseated. Zoe coughs and cries some and is obviously uncomfortable so she turns to her mother for comfort and suckles and rests in her mother’s arms and lap.

KM finishes her Sunday School class

Theo and KM change Zoe’s ng tube sticker (that holds the tube in place so it won’t be ripped off her face and pulled up from her throat)

Zoe plays with the magnets that are on the fridge

11:00 Church at home

11:15 little crying, suckling (maybe from nausea since it’s a side effect of medicine and the supplement is not what her tummy is used to), uncomfortable cries, outburst cry during a bowel movement.  Dad caresses her head and mom snuggles her and speaks gently loving words.

Diaper change, diarrhea

11:30 suckling, sitting with KM, watching dog (named Bear), KM moves Zoe’s legs (to keep the muscles moving and help circulation which is needed because Zoe cannot stand anymore due to muscle weakness and maybe pain--some medications can cause leg pain)

11:45 on mom’s lap, playing with coaster and hair clip she saw, looking and pointing out window, smile or two

12:15 Zoe seems uncomfortable again, suckling, cold feet (poor circulation due to medications causes extremities to experience cold), grandma Annett holds and massages Zoe’s cold feet to warm them

Playing with Bear (this means KM pets him or plays with him and Zoe sits on KM’s lap and watches, smiles and an excited happy sound escapes her

Rani plays with Zoe with an etch-a-sketch doodle toy

Zoe watches a couple Skylani Videos (These are short videos made by Zoe’s aunts--Skylene, Xela, & Rani--just for her. These have become very helpful for times when Zoe’s attention needs to be distracted from other things going on in the hospital as well as just for fun.)  Zoe wiggles a little when she sees Rani dance.  This is a current Zoe dance:)

12:42 Zoe eats hummus by dipping a carrot in it

Pointing and making baby talk noises to signify her wants for hummus

12:50 Snagged her mom’s piece of pizza and wanted Theo’s piece too

Suckles for a while then started fussing due to bowel movement

Diaper change, diarrhea but not as runny

Nap with KM

2:45 Up from nap, diaper change, suckling

3:25 diaper change, crying, painful to have bottom wiped

Smiley after diaper change

Bowel movement again and in pain, crying

Diaper change

4:00 Swollen leg (side effect from medications)

Theo does research on swollen legs and calls an oncology doctor at Primary Children’s Hospital.  The doctor will call back.

4:34 Theo reads Ten Apples Up On Top to Zoe who is on KM’s lap

No diaper on Zoe, she has a chuck pad under her so her sore bottom can air out helping her rash that was created from chemo drugs that come through in her poop

Smiles and points at the book

Suckling while Theo keeps reading. She keeps an eye on the book.

Zoe watches a Skylani Productions movie, waves to grandpa in the movie.

She pees while on the chuck pad.  Her dad cleans up.

Zoe sits on KM’s lap while KM plays a game with Xela. Suckling. KM moves Zoe’s feet and legs

KM brings Zoe up for dinner and while they wait at the table Zoe is fussy and wants the foods she sees.

5:10 Dinner, Zoe tries some foods, doesn’t eat much. She pinches very tiny pieces and gets a little food on her fingers and eats it. Suckling on and off

5:40 Theo gives her food supplement through her ng tube, suckling

KM takes Zoe outside on grass in the sun, Theo joins them, Zoe suckling then playful and laughing.

6:20 Doctor still hasn’t called back about swollen legs

Eating hummus on a carrot on the rug on the floor with parents

Theo researches about swollen legs and cancer.

Doctor contacts Theo and has him send a photo of Zoe’s swollen legs and says it’s likely due to steroids.  Theo gently massages Zoe’s swollen legs.

7:00 Zoe on KM’s lap eating little pieces of salad and suckling on and off

Theo hears back from the doctor.  We need to take Zoe to the Emergency Room and have her checked for blood clots.

Diaper change

Theo & KM go into the ER with Zoe. She is checked and tested. She’s ok.  Theo & KM have to measure her thighs tomorrow.  If they are larger Zoe is to go directly to Primary Children’s Hospital.  If they are the same size they can wait until their scheduled appointment on Tuesday to go to the hospital.

Grandma Annett waits in the car and receives this text from Theo while in ER: They’re gonna check her electrolytes and platelets, and see if an ultrasound tech is here. If not, we can just do ultrasound on Tuesday. Two of her medications, as well as tube feedings, are known to cause swelling, so they’re not sure exactly what’s causing it. They measured her thighs and calves, and we’ll measure them again for the next two days to see if the swelling gets worse. If it stays the same then we just go on Tuesday like normal. Her numbers are all good except calcium. We should probably think of ways to increase her calcium.

9:45 All arrive back from the ER

Zoe and KM eat a snack, Zoe wants only hummus and Beef Cabbage and Carrot Stir Fry, suckling, KM moves Zoe’s feet and legs

Theo gives Zoe 5 medications through her ng tube. Suckling

Theo flushes her PICC line

KM swabs Zoe’s mouth with a medication (to help Zoe not get mouth sores from chemo), Zoe helps by doing it herself

Diaper change

10:25 Zoe goes to bed & so does KM (Zoe cannot go to sleep without her mother next to her or holding her)

2:30 diaper change (two weeks ago the diaper changes were every 2 hours, now it’s every 4 and immediately after bowel movements)

6:30 diaper change (with every diaper change a protective cream is applied to protect Zoe’s bottom from chemo infused poop)

8:30 diaper change

Zoe played a little before bed in the evening.

May 14, 2020

From Annett:  

Miracle #26 Mother Angel

Some things Kirsten-Marie (and Zoe) have had to endure:  Worry.  Sleepless and restless nights.  Fatigue.  Hospital food.

Watching her baby poked and prodded while tests are done, Swab up her baby’s nose, Mouth swabs for Zoe’s mouth sores, Baby bottom sores, Zoe’s cries from pain and discomfort and maybe pins and needles sensations, Blood draws from Zoe’s little body, PICC line surgically implanted into Zoe’s arm, Ng tube put down Zoe’s nose, Relentless medicine put into Zoe’s little body, Zoe is attached to KM constantly so KM literally goes nowhere without Zoe.  If KM leaves, and even if KM sets Zoe down next to her, Zoe cries Zoe cannot sleep without her mother right next to her. Today Zoe was having fun with Theo so KM slipped away and was getting ready for a shower but Zoe realized her mother was gone and started crying.  So they took a bath together.

Baths with Zoe in shallow water--this is how KM gets her own body cleaned (no showers because Zoe cannot get her arm wet), Zoe’s pain, Marrow testing, and the big ugliness of it on Zoe’s backside, constipation, and diarrhea all over the place.  Absence of Theo during their hospital stay.  Isolation during hospital stay.  Zoe’s suffering. The unknown

This amazing mother gets no “breaks” from caring for and being attached to Zoe.  Zoe nurses a LOT, more often than babies who aren’t sick.  Zoe’s needs are not only constant but also relentless and life threatening.  KM happily cares for every need.  Now, here is the miracle:  she just does it.  It’s part of who she is.  She doesn’t think she's special or should be revered or set apart as someone spectacular.  She doesn’t moan to her friends about needing a break.  She doesn't try to pass off Zoe to her daddy when Zoe is not ready to do that.  Her heart goes out to her suffering child all the time in every moment. She just loves her baby girl and does what love requires and she has the energy to do so.  Kirsten-Marie Weiss Smith is the angel for her Zoe.

The beginning.  Theo, Kirsten, and Zoe came out to quarantine with Theo's family during the work from home orders.  Zoe was not quite herself and wasn't feeling well.  She just kept getting worse and her parents were concerned to the point they took her to the hospital for testing.  All the tests came back fine until the blood work.  Her white blood cell count was incredibly high.  She and Kirsten were put on a life flight to Primary Children's Hospital in Salt Lake City within hours.  Theo and his mother followed them down to SLC, but Theo is not allowed regular visits in the hospital.

Diagnosis.  Zoe's official diagnosis is Chronic Myeloid Leukemia (CML) with a 9;22 translocation mutation presenting in blast crisis, meaning a large percentage of her cancerous blood cells are also growing as a second type of Leukemia, the much more aggressive Acute Lymphocytic Leukemia (ALL). Besides the already very rare nature of pediatric cancer, CML is estimated to be 1-in-a-million of all pediatric leukemia cases that do happen, let alone the extremely unfortunate occurrence of Zoe’s cancer transforming into a second type. Simply put, successfully diagnosing and treating the probably unprecedented nature of Zoe’s cancer will be an especially complicated and uphill battle, even among childhood leukemia cases.