Zoe's Journey

05/30/2023

02/26/2023

So many people have followed Zoe's Journey and after we lost her, even more have expressed an interest in making a special impact in the live of children fighting cancer. Zoe's family has gotten involved in Camp Quality Louisiana, which is summer camp for children and their families dealing with childhood cancer.

Camp Quality Louisiana is scheduled for July 9-14, 2023. Sign up to volunteer here https://www.campqualityusa.org/la/

06/25/2021

Share Memories of Zoe & Support the Simpson Family

06/24/2021

Arrangements for Zoe

Friday: Celebration of Life 6-7 PM Friday Griffin Funeral Home 600 Hwy 139 Monroe. Visitation before and after 5-6 and 7-8

Saturday: Visitation Antioch Church of Christ, Spearsville 10AM to 12PM Saturday with graveside service at 12:00 noon (Antioch Cemetery)

06/21/2021

These are the words I never expected to say or write...Our sweet Zoe passed away on June 19. She fought so hard for 18 months. She faced cancer and the toxic treatments that caused multiple health issues. She hurt so much of the time, but she made such a strong effort to push forward, every single day.

Zoe had an aggressive and rare form of hypodiploid leukemia that was sadly, not identified until 15 months into her journey due to incomplete genetic testing. The fact that she went into remission the first time in only two weeks is a wonder and a testament to Zoe's strength. A lot of things with Zoe's cancer are not commonly seen. I consented to several studies and procedures to help St. Jude doctors and researchers learn more about why Zoe did not survive. My hope is that someone else's baby can be saved when they learn where Zoe's treatment went wrong.

Zoe's brother Aden, her sisters, her dads Kenneth and Robert, bonus mom Bridget, grandparents, aunts, uncles, her best friend since day 1 of pre-k, extended family and her friends are devastated and will never be the same. Please reach out to them and support them if you know them. They need to know you're thinking of them and praying for peace and strength as we all grieve this horrible loss.. Please support them however you can because they are also hurting so, so much.

Zoe is in a beautiful, happy place and never again will she experience pain. No more chemo, no more needles, no more surgeries or tubes or pills or shots or month long hospital stays. She was surrounded by family as she passed. I held her as she took her final breaths. Her sisters held her and told her she was loved. There was so much grief in that room but also so much love. She never woke up after her surgery on June 14, but I believe she heard every word and felt every kiss and hug. She loved snuggles and the nurse helped me get into bed and hold her before she passed. I believe she knew she was loved and that gives me some peace.

I will share details of arrangements when we have everything sorted. We aren't calling it a funeral, but a celebration of Zoe's life. Aden told me that Zoe wouldn't want us to cry, she'd want us to tell happy stories and laugh. And oh do we have so many stories and beautiful memories of her. Even if that doesn't stop the tears, Aden is absolutely right.

06/17/2021

Here's our Zoe update for the day. Her doctors feel she is improving. They've gone down on sedation meds and Zoe still isn't awake but she's moving her arms and she opened her eyes for a second for me. The best thing is the doctors haven't found any new infections at all. Our big hurdles right now are getting off the vent, clearing up her pneumonia, and sorting out the cause of fevers. The oncology doctors are going to be talking to the primary oncology team about how to approach her leukemia soon.

1.Ventilator: Zoe is still on a ventilator to help her lungs heal and her body to get much needed rest. She went down from 40% yesterday to 35% today!!!

2. Infections: No new infections anywhere!!! Lung cultures still negative, we're coming up on 48 hours of negative cultures!!!! New picc line shows no blood clot or infections!

3. Chest CT: her chest CT shows something called cryptogenic organizing pneumonia. That's being treated.

4. Fever: she keeps running fever but cultures are negative. The doctors think a combination of inflammation and leukemia are causing the fever. Her inflammation numbers were trending down but came up last night a little.

5. Leukemia: her peripheral MRD is down to 13%. Zoe has some major hurdles here in ICU so I understand the leukemia part is on hold until Zoe is better. Our doc said peripheral MRDs are not totally accurate so we'd need to verify this through a bone marrow aspirate. However, the higher peripheral MRD two weeks ago was sufficient enough for them to discuss end of life care. So I am going to put my hope in this lower MRD being accurate as they felt the previous higher MRD was accurate.

06/15/2021

I'm going to try to post a list of the challenges Zoe faces each day. As she overcomes it or we get more information I'll post an update. I'm blown away with how much love we've been shown during the darkest part of Zoe's Journey. Please continue to pray and send all the love, positive thoughts, and good vibes our way. She's far from being out of the woods, but she is so strong.

1.Ventilator: Zoe is on a ventilator to help her lungs heal and her body to get much needed rest. We need to see her use of oxygen come down. She started at 40% today, jumped up to needing 60%, but now she's at 50%.

2. Infections: Her central line was removed yesterday (6/14). No new infections have been found but we won't know if she's cleared the infection for another couple of days.

3. Lungs: The pulmonary doctor performed a bronch today and looked at her lungs. She said she saw no mucus or pus which is amazing. She saw a tiny amount of bleeding but that is not a concern because it's small and would not prolong her use of the ventilator. Overall her lungs sound and look good. We still have to wait a few days for the lung cultures to come back to rule out infection.

4. Chest CT: her chest CT shows something called organizing pneumonia. The antibiotics Zoe is already on could help us but the doctors are still talking about how to approach this. She's now part of a study at St. Jude to better understand adverse pulmonary affects of car-t.

5. New picc line: Possible blood clot in her new line. We're waiting on the doctors to read the ultrasound to tell us if there is a blood clot or not.

6. Leukemia: her peripheral MRD is down to 13%. Our Leukemia doctor had not heard this news until I told her so she hasn't researched it yet. Zoe has some major hurdles here in ICU so I understand the leukemia part is on hold until Zoe is better. Our doc said peripheral MRDs are not totally accurate so we'd need to verify this through a bone marrow aspirate. However, the higher peripheral MRD two weeks ago was sufficient enough for them to discuss end of life care. So I am going to put my hope in this lower MRD being accurate as they felt the previous higher MRD was accurate.

06/15/2021

I don't usually post this many times in one day. I just wanted to say that Zoe came through surgery with no problems. She's intubated and sedated. She's so strong she keeps fighting to wake up and trying to remove her tube. It's awful seeing that tube. But it feels so good knowing I can hold her little hand and still tell her how loved she is. Now that her infected central line is out, we hope to see improvement in the next 48 hours.

I talked to the doctor about Zoe's lower MRD. It could be that the car-t therapy worked more than they thought. It could be that she is very sick and leukemia just thrives in a healthier body. He said that her leukemia could spike back up when she's healthier. Or it might not. He said that they don't think the disease will increase quickly since her leukemia hasn't done that in the past. Overall, he is happy her MRD is so low. It wasn't expected since it was at about 50% a month ago and 38% two weeks post car-t.