New Plan, Same Prayers…

There are no words to describe hearing “We cannot proceed with surgery because the tumors have grown and are more active, and proceeding with surgery at this time could be catastrophic.”

That was Friday evening. Hutton’s surgery was scheduled for Monday morning. 

So instead of surgery on Monday, we were now meeting with her oncologist. Having to sit with the unknown over the weekend was pure torture. What are we going to do? Are we going to switch to a different chemo? Are we going to try for surgery at a later date? Or are we going to hear our biggest fear, that they are going to tell us there is nothing else they can do? What is the new plan? WHAT IS GOING TO HAPPEN? 

This weekend was full of hidden tears, spiraling thoughts, and just all the things. 

BUT, our appointment this morning was somewhat reassuring. Her oncologist told us what his “plan” is, but he still wants to meet with the rest of Hutton’s oncology team this Thursday, to review her case and have a solid plan by the end of this week. 

So we’re back home, waiting to hear from her team on Thursday evening or Friday morning and a new chemo treatment is scheduled for Monday. 

We are praying that this chemo is the one to fully eradicate the cancer from Hutton’s body! We are also praying so so hard for Hutton’s little body and for her bone marrow. Her bone marrow really takes a hit and takes a long time to rebound (longer than typical) which in turn delays the follow-up round(s) of chemo, so we are also praying that her body reacts and responds positively to this change and will produce the numbers she needs to stay on schedule.

SCANS, LABS, CHEMO, REPEAT

I was talking to a friend tonight and he asked about Hutton and how she was doing. I said she was doing well, has a scan on Thursday, and what that scan shows will dictate our next steps…Surgeries, chemo, radiation, ALL the things.

I feel like our life is lived scan to scan. Her Thursday scan is the scan her lung surgeon needs to determine when her lung surgeries will be. This scan will also tell us if the cancer in her pelvis has shrunk and if the chemo is working.

We live our lives based on scans. One thing we do know though, is Hutton will not start the school year in the classroom, but her next scan will show us what the next few months will look like.  Will she be able to go to school after Thanksgiving…after Christmas??? We don’t know. One of the things we have learned standing with and next to Hutton has she battles cancer, is that you don’t know what you don’t, know…and even what you do know can change in an instant.

With that said, what we currently DO know,  is she will potentially have 2 surgeries to remove the cancer in her lungs. But after that, we don’t know until we see what the scan shows. We assume we will need to pick up chemo again, but we just don’t know until we see what the scan shows. It’s so, so, so, so, so, incredibly hard to realize that you literally cannot do or plan anything until you have results from a scan. It is not an over exaggeration, we literally have no idea what our life looks like until we get the results back from her scan on Thursday, and then after that, we will have a rough idea, but still, won’t know much more until the results of her next scan, and so on, and so on.

Is she having lung surgery as planned on Monday? We don’t even know that, because we have to wait for the results of her labs to ensure her numbers are high enough to have surgery. Scans, wait, labs, wait, chemo, wait, then repeat, that has been our lives for the past two years and really is one of the only things we know.

We are really just living life day by day never knowing what is coming next, while at the same time, trying to give Hutton some form of normalcy and routine in her daily life, as well as trying to allow her to LIVE her life as much as possible, because we really still, and honestly, do not know. And that is what we try to focus on and show her, to LIVE her life. One thing Jeremy has said, is that if we can do something NOW, something that allows her to LIVE, something that allows her to experience and build core memories, we will just do it and figure out the rest later.

Well, Hello Bond

If you know Hutton you know she is an animal lover. She REALLY loves reptiles and just all animals. For a while now she has said she wanted a cat, specifically a Devon Rex. During a very rough chemo session Jeremy promised her a Devon Rex kitten when she was done with chemo. In true Hutton fashion, she began researching, studying, and doing all the things to learn about Devon Rex kittens and cats and is pretty much an expert at this point. 

Well, as a reminder sometimes God may not answer some prayers (yet), but He does sometimes do things to remind you He’s still there, because recently, everything fell into place, the stars aligned, her oncologist signed off on the kitten, and we were able to give Hutton her sweet Devon Rex kitten. 

This kitten came from a breeder on the East Coast, so when we were at her PET scan appointment we were able to meet the kitten transport at UCLA to get him. We all knew that the kitten was coming except for Hutton - we told her that we were waiting for a door dash from moms favorite sandwich place in Westwood, when in fact we were waiting for the the kitten to be delivered to us at UCLA. We waited on the dining commons lawn with one of her nurses (who is an amazing friend) as well as her bestie Isha, her mom and one of her other friends who happens to be her child life specialist at UCLA. When mom went to get her “sandwich” and came back with the kitten, whom Hutton has named Bond, Hutton was shocked! She was soooooo happy to finally get her kitten. The kitten was supposed to be a celebration gift after Hutton completed chemo, God touched this breeders heart, who had the EXACT kind (color and markings) Hutton wanted, was available now, and wanted to gift it to her! So of course we said yes and turns out it was exactly when we needed him to join our family. 

We have had Bond for a little over a month now and he is the perfect addition to our crazy family.  He absolutely LOVES cuddling with Hutton, which is exactly what she wanted. He is the sweetest boy, but is also an absolute terror at the same time 😂😂 We are just so in love with him (even Jeremy 😝) Dash however….is slowly warming up to him. 

BACK TO LA LA LAND

Well, we’re back to living in LA for a little bit. Hutton’s new chemo can be outpatient, thank you Jesus, but it is 5 consecutive days which means, for everyone’s sanity, we will be staying at a hotel near UCLA while Hutton gets her treatment. 

Next week, Hutton and Steph will be living in LA from Sunday to Friday, and Hutton will get chemo daily Monday to Friday. This is not our first rodeo, since this is what we did when Hutton was going through radiation. We know what to expect, but it is still a lot. There is a community kitchen at the hotel, so Steph can cook meals for Hutton, which means DoorDashing less (As long as her tastebuds cooperate), but it entails bringing EVERYTHING up there (pots, pans, cooking items, etc.) Still, the fact that she doesn’t HAVE to be admitted for 5 days, even if that is logistically and financially easier, is a small blessing for Hutton. Just having the freedom to not have her port accessed, not be attached to fluids 24/7, and being able to go out in Westwood and go to the farmers market and feel the sunshine walking to and from the hotel to the infusion center is such a blessing. We are also able to fit in doctors appointments while we are up there which is great because it’s one less early morning drive to and from Westwood.  This appointment is with one of her lung surgeons, so we will know more about her upcoming lung surgery after that appointment. 

When we found out that Hutton’s chemo schedule would be changing and that she would be having another surgery, we also realized that our summer was going to be drastically different than we had planned. All trips with Hutton were cancelled and ALL things just changed. But Steph was determined to give Hutton a fun summer, so very last minute she found a house in the desert with literally everything a kid (and an adult) could ever want. It even had Hutton’s favorite, a lazy river.  We booked it super last minute, invited a bunch of friends and had an absolute BLAST! It was so perfect because Hutton could be in the pool or the lazy river, the water slides or even he game room! Shoe could go anywhere on the property or if needed, just go inside and relax and recharge. This was exactly what she needed. Even more important, she was able to move around the house and property “mostly” on her own. She has been determined to do more on her own and without help, and this property was perfect for that, and I was able to relax a bit because I knew the friends she had with her would look after her as well.

It was so fun to see her just be a kid, the house had a bunk room and the girls would hang out in there, sleep in there, and just have the quintessential girls sleepover. That experience is something that you want your child to experience and seems like such a simple and often taken for granted event, but for us, when Hutton was diagnosed we didn’t know if that would ever happen for her, so seeing it happen was amazing. It was also perfect because her taste buds are so specific with chemo that we could make her favorite foods and not have to worry about eating at a restaurant and if they would have something Hutton could eat.  It was amazing as parents to just sit back and watch her be a kid with her friends, which is so rare. She has grown up so fast going through her fight with cancer, that sometimes I forget she is still just a kid. Also as a parent, to be able to relax and have a great time because there was soooo much for her (and us) to do at the property. 

It’s funny, for someone who has almost died on multiple occasions, is reminded of it daily, and someone who has seen and been around so much death…why has it taken my daughter having cancer to really “see” that you never know when your last moments will be and when that happens you can’t take anything with you. I have been so focused on providing a good life and future for her future, that many times I forgot about the NOW.

It’s that realization that makes me want to allow her to be as happy as she can be and enjoy as much of life as she can, RIGHT NOW. We have kind of taken on the mentality of you can always work more and earn more. After all, money is a renewable resource, time is not. You can’t always make more experiences and memories and those are priceless. So if I need to work more and take on more, I will. If it gives us the opportunity to do something meaningful with her and create a core memory for her, then we just make it happen.

SCAN UPDATE

This is going to be short. I am tired, Steph is tired, and Hutton, I cannot imagine what she is feeling. 

I received a call from one of Hutton’s doctors while at work, and hearing his voice on the phone, immediately knew he was not delivering news I would want to hear. 

Hutton’s scans showed that the cancer in her hip is still lighting up, meaning it is still active and alive, but even worse, the spots in her lungs have doubled in size AND there is a new spot. 

So, Hutton’s doctors will be meeting to plan a new treatment protocol, once again…this means, she will have to go back to in-patient treatment. 

This really just leaves us asking how and why? These past few months have been absolutely amazing. She has been able to enjoy being home, feeling better, putting on weight, and growing her hair. We have been able to enjoy time with her, go to Hawaii, and she finally got a kitty. We were riding a bit of a high…and as much as I am happy and grateful all for all that it does not make the fall back down easy. We were once again getting the hang of the new “normal” and seeing what we could do to get her even closer to going back to a “normal” life, she could even see the light at the end of the tunnel, determined to walk again and get back to her life. But as they say, you make plans….and God laughs. 

So once again, we are starting back at the beginning, AGAIN. As of right now we don’t have any answers. Steph and I will be meeting with her oncologist on Monday to discuss next steps, we will be meeting with a new surgeon on Tuesday to discuss potential surgery, and then Steph and Hutton will head to UCLA on Wednesday, which also happens to be Steph’s birthday, to be admitted for chemo. 

Please continue to pray for Hutton, for her physical and mental health; and for Steph, this is definitely taking its toll and wearing us down. They will continue to need all your prayers and support, because if either of them are feeling anything close to what I am, they will really need it all.

SCANS

Hutton has a PET-CT scan tomorrow (Monday).  I will never forget after one of her scans we were inpatient and I asked her doctor when we would have the results, because I was so anxious about them. He said “You will always be anxious for the results of scans, that will never change.”  He was absolutely right and we have always appreciated his upfront honesty. 

We are always anxious about the results of her scans. We are always praying that the scan will show  she is cancer free. BUT we don’t know what the scan will show. We don’t know what our life will look like after the scan and that is SO SCARY. Will it be clear and she will be able to get back to being a kid? Will is show the chemo and everything else we are doing is working, and she will be able to continue on her every other week protocol allowing her to continue to do more? Will it show something we don’t like, and she has to go back to inpatient treatments? We never know, and it is hard. 

It’s hard to plan out our life “after scan”. We try to and we try to be hopeful, but truthfully we just don’t know. 

Hutton is doing so good right now and it feels like we are on an upswing, so we are just praying that the scan shows that the chemo is working and that the tumor is shrinking or gone completely! 

Y’all have shown our family so much support and love, we appreciate every bit of it. And we continue to ask for your prayers, especially during the week of her scans. Not just that they show the best results possible, but also for Gods peace and comfort while we await the results. Thank you 🩵

Make-a-Wish

We haven’t updated in a while because everything is pretty much the same, which is a good thing. 

We celebrated Hutton’s 11th birthday at the end of April. She didn’t really want to do anything, so we just had dinner with 2 of her besties at Nordstrom (of course), and then they walked around the mall. It was the perfect low-key birthday she wanted. My parents were able to drive out and get to spend some time with her as well, which she really enjoyed, since she doesn’t get to see them a lot.

Hutton has been getting outpatient chemo at UCLA every other week, and she is doing equine therapy and PT to get her walking again once a week. She has mentioned how she has wanted to attend equine therapy twice a week, but since it isn’t covered by insurance, we have been looking at how to make that happen. Thanks to an amazing lady, we may have a way for her to go twice a week! (More on that to come). 

Hutton hasn’t had any major side effects from this chemo protocol, which is a huge blessing, and she is even growing hair again! She has another scan at the beginning of June, and we are praying it shows no cancer in her body! Leading up to the scan and waiting for the results are always stressful, BUT we have a great distraction leading up to this scan: We are going on Hutton’s Make-A-Wish trip!!!!!!!

This trip has been a LONG and STRESSFUL journey, but we are doing it!  We will share more about what it was like working with Make-A-Wish in the future, but for now, let’s just say we are grateful we’re able to go on this trip. (Spoiler: it has NOT been sunshine and rainbows, and we almost cancelled the trip multiple times). 

We will be going to Aulani, the Disney Resort in Hawaii.  We are so excited to travel and be a “normal” family.  Hutton didn’t want to go on this trip until she could walk again, but this was the time we were offered by Make-A-Wish, so we jumped on it. We are also relieved that we are staying at Aulani because with Hutton’s mobility issues, we know we will have no issues (hopefully) because Disney goes above and beyond to make everything accessible. 

This will be our first family vacation in over 3 years and the first time I have had the chance to go somewhere not work-related and “take a break”, though I am not sure entertaining an 11-year-old for a week isn’t much of a break… 😂!!  

As nice and relaxing as we believe it will be, it is still stressful knowing we need to keep an eye on her for any health issues and side effects that could present themselves unexpectedly, but we know this will be an amazing experience for he and allow her to feel like a kid again. 

She is planning to make a lot of “content” for her YouTube channel, so if you haven’t subscribed yet, now is the time! 

https://www.youtube.com/@checkereditz

Please pray for smooth travels and an amazing trip.  We are very nervous about this trip, but we are determined to make the best of it! Her oncology team and her surgeon have cleared her, so we feel good about it overall, but still, there is some worry. 

Where Do We Start?

Or should I say, where do we update? In a nutshell, we’re doing chemo and hoping and praying it’s killing the cancer in Hutton’s body. That’s what we have been doing for the last year and a half. EIGHTEEN MONTHS. We’re in it. Did we expect to be here 18 months ago? Not at all.

Eighteen months total…fourteen months from Hutton’s hemi-pelvectomy, where her surgeon removed 1/3 of her pelvis, plus her hip socket, plus her cancer (well, almost all of her cancer).

Her surgery was February 13, 2025 and we thought she would be walking by the summer of 2025. She was in a wedding in June, and I remember telling the bride (we love you, Coach Danielle and Mr. Austin), “Hutton should totally be walking by then!” spoiler alert she was in fact NOT walking by then. 

It’s now April 2026, and we are still working on getting Hutton walking again. There was a setback when we found that the little bit of cancer left in her body had begin to grow, so we basically lived in Westwood for seven weeks while she was getting radiation every day, and could not continue physical therapy. But Hutton has been working very hard since then. She has PT with horses weekly, and she has her shoe with the lift. We are doing ALL THE THINGS. We are confident our girl will be walking again; it will just take time.

And until that happens, she is rollin’ around in her wheelchair (thank you, Ziebarts) and walking with her walker.She is doing chemo every other Monday (outpatient), and she is having very minimal side effects. Combining the horse therapy and no longer having inpatient chemo is definitely a step in the right direction for her, both physically and mentally.

Oh, and she has HAIR!!!!! Hair, eyelashes, and eyebrows! Her oncologist has warned us that it is possible she could lose her hair again, but for right now we are going with it, and let me tell you, it is the softest hair ever!

So I guess the update is that we are still doing the thing(s). We are continuing chemo, we are praying, and we are trying to live our best life while thriving through chemo and cancer.

Update

Wow I can’t believe our latest update was a month ago! 

As of Hutton’s last scan in February her tumor is shrinking.  Praise the lord! 

In August 2025, we found out that Hutton’s tumor was not responding to her treatment the way we had hoped and was actually growing…not the news we wanted to hear, especially since we were only a couple treatments away from finishing that protocol. But her amazing team at UCLA was ready to pivot and start a new chemo protocol. Well, this new protocol was really, really, hard on her body, which had already been through so much, including the 7 weeks of radiation.  It was so hard on her body, that her numbers were not coming up like they should have been, and she was needing what seemed like weekly transfusions, something her team did not like. She should have been getting her 5-day in hospital chemo every 2 weeks, but because of her numbers, even with transfusions, she was going 4-5 weeks between sessions.

Her doctor decided to delay one of her 5-day chemos, to see what her scans would show. Since her last scan showed the tumor had shrunk a little bit, her team decided to pivot again. She is now getting only one chemo (she was getting 3) and she is able to get it every other Monday at the infusion center.  This means no more hospital stays! We go up early Monday morning, get chemo and then get to come home! The belief is that it is better to hit the tumor more consistently and frequently rather than 5 days hard and an entire month off. 

We are praying this will be the case because Hutton has been responding great to this new protocol.  She is not throwing up, she does not have mouth sores, she is not nauseous all the time. She can eat and drink, she is in a good mood, and she is growing hair! She is VERY excited that she has eyebrows now. 

She has started equine therapy to get her to walk again, she has been venturing out more, and she even went to school one day! We are taking baby steps (no pun intended) but we are moving forward and praying we can continue making positive progress. 

Thank You

First, let me start by saying THANK YOU so much for all the prayers yesterday! We definitely felt them and saw them in “action”.

Yesterday was such a big deal for Hutton because this was her first PET scan where she was not sedated, and this was her first time getting an IV.  Hutton has had IVs before, but since she is SO terrified of them, we have always asked that they be placed while she is sedated and removed before she wakes up, so this was the first time she has gotten one while she has been awake, and she took it like a champ! Most of the time, when any medicine goes into her body, it goes in through her port, so she’s very used to her port being accessed and prefers that over the IV, but she can’t lie flat on her back with her port accessed, like she has to do for the PET scan, so an IV was the only option. 

Hutton was nervous about the scan, but Steph was able to stay in the room with her the entire time to calm her, and it worked.  She did great!  She laid still and let the machine do what it needed to do, and she listened to her music the entire time. It was fabulous. 

Typically, it takes about a week for us to get the results of her scans, but today (which also happens to be Stephs dads heavenly birthday), we got the message that the results were back and that her doctor is pleased with the results.  HER TUMOR IS SHRINKING!!!!! Her doctor is so pleased that he has changed her chemo to one day every other week at the infusion center, meaning no 5-day hospital stays! We will go up in the morning, get chemo for a few hours, and then head home! 

This is obviously not the end of her fight, but it is definitely a little victory and a step in the right direction!! 

1 Year

It has been one year….February 13, 2025, since Hutton had hemipelvectomy surgery to remove her cancerous tumor, which also removed approximately 1/3 of her pelvis, as well as her hip socket. 

Looking back, we were SO naive. We thought she would have surgery, and the recovery would be difficult, but the cancer would be gone, she would finish her chemo, be cancer-free, she would be walking again by summer, and back in school in the fall. WOW, just WOW. We were so wrong. 

That first night was horrible…She was in constant pain and could not get comfortable. Nothing we did seemed to help her, and any movement she made would send her into tears. She was in agony. The pain made it hard for her to breathe and was so intense she couldn’t even talk. 

The second night, I can say without a doubt, the worst night of our lives. Her pain continued, and nothing was working, and she was not getting relief from the pain, no matter how much pain medicine she was getting.  And I will just say it, there is a DRASTIC difference between staff at UCLA Santa Monica, where we were, versus UCLA Ronald Regan, and I truly believe what happened next, never would have happened with the staff and nurses at Ronald Regan. 

We witnessed something I pray no parent ever has to witness (though many unfortunately do), and something I wouldn’t wish on my worst enemy. The 2 days of pain in combination with the staff simply throwing more pain medication in her (which was obviously not working), slowly took its toll on her body, and we sat there in her room as a Code Blue was called. Our little miracle baby lost consciousness and stopped breathing. Those moments in that hospital room with what seemed like hundreds of people working on our unconscious child are moments we will never forget. 

UCLA Santa Monica, where we were, does not have a PICU so Steph went with Hutton in the ambulance as they rushed her to the PICU at UCLA Ronald Regan. I frantically packed everything in the room and rushed over to meet them, not knowing what was happening. This was followed by sooooo many days in the hospital by her side while she was in the PICU. She was unconscious and intubated, but we were still speaking to her to calm her, as she would appear to “wake up” in a panic, not knowing what was going on, only to fall back “asleep”.  I held her little hand for hours; she “slept”, feeling it grip my hand tightly when I would try to adjust or move, not wanting us to leave her side, and we didn’t.  

Watching them go through the slow process of weaning her off the medication and slowly allowing her to start trying to breathe on her own, then having to sit there and watch as they removed everything, not really knowing if she would be able breathe on her own…that was agonizing. 

It’s been one year since that night kicked off all the events that followed, and we are grateful and happy every damn day that she is still with us, even if she still cannot walk on her own, and she is still fighting the cancer.  

To say it has been a lot is an understatement…and at this point, there really is no end in sight. A year ago, we did not think this is where we would still be…but here we are. She is still fighting the cancer, still going through chemo, still can’t walk, and spending most her days in bed and still needs a wheelchair to get around….BUT, she is also still here with us and bringing daily smiles to our faces. Through this all, she has had her moments of weakness, of tears, crying that she wishes it was over and she was done, didn’t have to be in the hospital or wheelchair, but overall she has stayed positive, and continues to be a shinning light to everyone who sees and meets her, she stays positive and we have to too…and do everything we can to project that to her…after all she is the one going through all this and she still finds a way to continue to be positive and continue to let her light shine, lighting up any room she enters and pulling people towards her. And we do have reasons to be positive….she is still here, her chemo was switched, and the cancer is shrinking (even though this type of chemo is much harder on her), due to that light in her that shines, she was able to start a new physical therapy (Equine Therapy). She is really excited about it, and seeing her beautiful smile the entire time was a blessing to our hearts. 

On the 23rd, she will have another PET-CT Scan, and we will have a better window into how the radiation and new chemo is working. We are praying that the scan will show that the cancer is dead and gone, and she can finish out the protocol and begin to move forward with her life.

We are forever grateful to everyone who is showing our little girl love and support, and for all the prayers she has received and continues to receive. 

2026

Were here! We are hanging in there but we’re still here!

We had a mellow New Years spent at home, it wasn’t the plan, we were supposed to go to a friends house, but Hutton was having major light sensitivity, so we stayed home and made the most of it, ringing in the New Year together as a family. 

The last week Hutton has been feeling really good, and she has been able to be really active. Jeremys work gifted us Disney tickets for Christmas and so we were able to spend a day at Disney (Mimi even joined us!).  Hutton had an absolute blast! It was a blessing to be able to see her enjoy herself and just be a kid. We were also invited to the Shea Therapeutic Riding Center with the NEGU foundation. Hutton was able to sit on a horse, walk a horse, and pet some adorable animals. Since we are not doing chemo this week, as scheduled, because of her numbers we have been too low, she has been able to hang at home, go to hobby lobby, see friends, and visit me at work, which I am sure she thought was super boring 😂. 

I am not sure if we have already mentioned it, but Hutton is on a new chemo. She has had it 4 times now, and we are still figuring it out. The first and second times she had a reaction (red face, itching, swelling).  The third round we tweaked a few things with her “support” meds and she didn’t have any of the previous reactions, BUT she had really bad nausea when we left the hospital which we have never dealt with before. The fourth round she had a minimal reaction (red face, itching, swelling) and a little bit of nausea. The fourth round her doctors lowered her dose by 25% because her body was having such a hard time with this chemo. 

She has been feeling good, but her numbers in between chemo have been dropping SO LOW and not coming up as quickly as they should, so even though the new chemo has her on a 3 week schedule (5 days of in patient chemo and 3 weeks off) she has been delayed, and have it seems she will on more of a 4 week schedule. 

This week Hutton had to get her labs done multiple times, and has done such a good job with it. We found out today that her numbers have reached at least the minimal requirement for admission, so she will be returning to the hospital next week for another 5 day chemo treatment. 

It’s Been A While…

It’s been a little bit since we posted an update.  We had an unexpected admission Thanksgiving week because Hutton had a fever when she was at the infusion center getting platelets. We haven’t had an unexpected admission in almost a year, so this was a huge shock for us. Thankfully, I was able to leave work, go home and pack the things Steph and Hutton would need, and drive up to UCLA. We are chemo warriors, we are used to this, we know this, we are not amateurs…BUT we were back to where we were a year ago with an unexpected admission. We are thankful for all of your prayers, because we were able to be discharged super early in the morning on Thanksgiving, and we were able to be home on Thanksgiving, which was a huge blessing. 

This new chemo regimen is really throwing us for a loop, though, and it is SO SO SO hard.  It’s almost like we are back to where we started a year ago. Back to the beginning.  This new chemo comes with new side effects that we need to get used to, so it’s definitely a learning curve.  This new chemo makes Hutton super nauseous, which we haven’t experienced before, so that is something new we are having to deal with. The nausea makes her not want to eat or take her pills, which adds another layer to her healing journey. Plus, the nausea medicine makes her nauseous! So she is dealing with the normal chemo ick, plus mouth sores, plus fatigue, plus this (new) nausea. It is a LOT, especially knowing that she was “supposed” to already be done. 

Hutton had expressed the desire to go to Disney to go on Haunted Mansion and see the Christmas Decorations, so we met with her oncology team and figured the best time for her to go was right after she completed a chemo cycle, so that her numbers would be up.  With all these new frustrations, we agreed that Hutton more than deserved to have a fun and somewhat “normal”  day. She would be able to get out of her bed, out of her room, and out into the world for some fun. So we planned it.  

We got hotel reservations, park tickets, and matching pajamas, because according to Steph, that is a must 😂, and to be honest, Hutton loves that kind of stuff as well. Steph planned the whole thing, and Hutton was feeling great and really looking forward to it. It was going to be a grand time…until we pulled into the hotel and she got nauseous. Like super nauseous. We got her into the hotel room, and she just wanted to crawl into bed and rest. An unseen issue with her being in a wheelchair is that going anywhere with nausea is unpleasant because when she goes somewhere basically feels like she is driving somewhere. Imagine being car sick and not being able to get out of the moving car. She did not want to leave the hotel room and was only able to eat ice chips. That’s how bad the nausea was.  So we spent 2 days in the hotel at Disney. On a positive note, she was able to sit on the balcony of our room and watch the fireworks show, which, later, she said was the best part. 

We considered just leaving and going home, and Disney was very understanding and was going to allow us to cancel the hotel reservation without any fees. But we thought getting her into the car for the drive home might not be helpful, plus Hutton has always liked hotels, and I thought any change of environment would help her mentally. So we decided to just stay for the duration of our reservations and take it day by day. Hutton felt really bad about not being able to leave the hotel room,  because she knew it cost money. This girl…such a good heart, with everything she is going through, and as bad as she was feeling, she was feeling bad “wasting money”.  Pretty sure this is because this was a lesson we were teaching her before she began her battle with cancer. We comforted her and told her it wasn’t a waste of money, and we were just having a nice hotel “stay-cation” to spend time together as a family. If she felt better and wanted to go into the park, we could; if she didn’t, we wouldn’t. This time was hers and for her, and it didn’t matter what we did as long as we were spending time together.  Finally, on the 3rd day, she felt well enough to go into the parks with her friends….then it started raining, so we had to leave earlier than expected.  It was not what we had planned for, but we made the most of it. (The story of our lives, the past 2 years) We all had a BLAST and made the most of our time at Disney! 

We have become pros at living life on the fly, and we have gotten used to not being able to plan anything…Well, I mean Steph has 😂 If you know Steph,  you know that she is a total Type-A planner. She likes a plan, and in the past year, she has realized that she can’t do that anymore.  This is even more so around Christmas time.  We have spent 10 years building Christmas-time traditions for Hutton. She has a gingerbread house decorating party as well as other holiday events she hosts and attends, but with Hutton’s chemo schedule and how she is feeling after chemo, she can’t really plan anything, again, for the second year in a row. 

 The only thing she can plan is the lab visits at Quest by our house, and then, depending on those results, see if they need to go up to UCLA to get blood, platelets, or both. Or, if her numbers are good, go for chemo.

The upcoming plan is that she has a scan (PET-CT) on Tuesday, then straight to an admission for 5-day chemo.  Again, that is the plan, but depending on her numbers from the labs on Tuesday, we won’t know.  There is a saying, “You plan… God laughs”…ain’t that the truth. We know His plan is greater than ours, and even though our plans may fall apart, they are by His design, and it may not make sense now, but it will. 

Radiation Treatments Complete

Hutton finished her last session of radiation on Tuesday…yayyyyyy! 

Radiation was a lot. Not just because it was an additional treatment Hutton had to go through when she “should” be done and moving forward, but also because Steph and Hutton were in a hotel near UCLA for 7 weeks (one of those weeks she was inpatient for chemo as well). 

Saying it was a lot is an understatement. While I was able to take the first week off and help get them familiar with the process, the rest of the time, I had to stay home and work, or was traveling for work. After that first week, we would be home on Friday, then Steph would spend what was left of Friday and all of Saturday doing laundry and re-packing. We would then load up, and she would drive herself and Hutton up to Westwood Sunday afternoon and check into their hotel for the week. Hutton and Steph would then spend the week up in Westwood, and return Friday afternoon, only to rinse and repeat. Steph was able to develop a good routine, but still, it was not an easy task. 

Hutton, thankfully, did relatively well with radiation. She did, however, have some issues with her surgical site, as that is where the radiation was targeted. She had some skin irritation that we had to watch closely, with cleaning, medicating, etc. The scars from her surgery are extensive, and the radiation aggravated the area, but that was the only “major” side effect from the radiation. She also needed lots of blood and platelets during radiation because her numbers were so low from the combination of chemo and radiation. It was nice that they were staying in L.A. because that meant they could just go to the infusion center for a few hours and get blood and/or platelets and not have it be an entire day, which typically includes 5 hours in the car because of traffic, which they may now need to do again since they will be home. This is definitely something they will miss being able to do. 

As a celebration for completing her radiation treatment, Hutton asked to stay in a “fancy” hotel, so she could order room service, so for her final 2 days of treatments, that’s exactly what we did. 

Steph did an amazing job and really tried to make the entire experience of staying in L.A. as fun for Hutton as she could. She took her to museums, explored Westwood, and went to the farmers’ market every week. They really got to spend some great mom/daughter quality time together. She tried to make it fun for Hutton and act like the experience was more of an adventure, with medical procedures, rather than medical procedures with some activities. And having to watch from a distance, due to work or traveling for work, I have to say, Steph absolutely succeeded at that. 

But I cannot move forward without first mentioning how we will forever be grateful to Hutton’s radiation oncology team for making this experience AMAZING. The very first day, Hutton had a really hard time with what they needed to do to prep her for the radiation treatments, and instead of it just being a job, and/or having a “having to deal with a kid” attitude, they took their time, comforted her and supported her with words of encouragement, and they showed this kindness consistently and daily throughout her treatments. They listened to her, they related to her, they made her feel special, and they will forever hold a special place in our hearts for everything that they did for our girl. When the radiation oncology team found out Hutton wanted to be a Demon Slayer character for Halloween, they all decided that they were going to dress up as Demon Slayer characters as well. Halloween was so special for her! They all dressed up, they all took their picture with her, they got her special Demon Slayer treats, they made her day, and made her smile! Even though I made a MAJOR Dad fail and forgot to pack a part of Hutton’s costume, which of course caused an understandable breakdown for Hutton and started her Halloween off on a negative note, looking back at myself as a child, I would have reacted the same way. But they were able to turn it completely around for her, saving that day and making an unforgettable core memory for Hutton. [If any of her radiation oncology team is reading this….Thank You!]

Hutton was the youngest patient by far, so she attracted attention in the radiation oncology waiting room, and even during this difficult time, Hutton’s inner light continued to shine, drawing people who were dealing with their own medical challenges to say high to her and encourage her. She made some great friends and had some entertaining conversations in that waiting room. 

Deciding to move Hutton’s treatments to UCLA was one of the most difficult decisions we had to make, and looking back on everything she has endured, we know we made the right decision, and if it were not for her Team at UCLA, from her primary doctor, the nurses and care team, and child life on her floor, her surgeon and the horror we endured post surgery (which had nothing to do with him or the staff at Ronald Regan UCLA), the PICU nurses and doctors who got us and her through something no parent should have to experience, I know in my heart we would not be where we are today and even though it is not ideal, it is better then where we “could” have been. So to her entire team that has done so much for her and continues to do so much, Thank You!

Now, we go back to Hutton’s chemo protocol, which is the “new” chemo and is every 3 weeks inpatient, for 5 days. Hutton, understandably, is completely over it. We all are. But if this is what we have to do to save her life, then this is exactly what we are going to do.  

Being in the hospital getting chemo is not fun, but we try to make the best of it for her.  She feels icky, she doesn’t like it, and it’s hard because some days she really wants to eat but has a hard time deciding because she doesn’t know what will actually taste good. So, we order her what she finally chooses, only for her to taste it and have it taste horrible. Chemo taste buds SUCK! She gets so frustrated because she is so hungry, but nothing tastes good. We order hospital food, we Door Dash, we get food from the hospital cafeteria (sometimes all within a 3-hour period), and we pray that something tastes good. Steph (or I if I’m able to be there ) will go downstairs and grab the DoorDash order and pray the entire way back to her room that what is in the bag will taste good for her. We can’t even imagine how it is for her to want to eat something that she normally loves only for her to try to eat it and have it taste horrible 😩 She always says “I’m so sorry but it just doesn’t taste good” and we tell her “NO! DO NOT BE SORRY! We understand” she will then apologize because she knows it costs money and she doesn’t want to waste it (which was something I was teaching her BEFORE all this happened), but she just can’t eat it. We tell her that she never needs to apologize for that, and it’s all a part of getting chemo, but as a parent, it is SO HARD.  

She has only had this “new” chemo twice now, so we are still trying to figure out the right pre-meds and post-meds. We are hoping that going into this 3rd session next week that we have it figured out and she doesn’t have a reaction to the chemo. So please pray for that and for a smooth chemo/hospital experience with no side effects. 

Chemo Weeks Are Always Hard

Chemo weeks are always challenging and this one was no different. Though, I would say it was a more challenging, as Hutton was not only getting her chemo treatment’s this week, but also getting radiation as well. This meant that she had to be woken up early in the morning to be transported down to where she receives her radiation treatments, which she did not like at all. 

Nevertheless, 5 days in the hospital is never fun, but we try to make the best of it for her. The nurses, child life, and her doctors are all really amazing, and are like family to us at this point (and that isn’t something we are just “saying” they really are). They all try really hard and go out of their way to try and cheer Hutton up when they can tell she is feeling low or having a hard time. 

When Hutton is admitted, she doesn’t like to do much because her port is accessed. Not only is this uncomfortable for her, but she doesn’t much like being attached to some type of machine for either medicine or fluids 24/7, and as I wrote earlier, this was Hutton’s first admission with chemo AND radiation so we didn’t know what to expect. She was not happy about having to wake up early and go down to radiation oncology every morning, but she did it and was a champ! 

This was only Hutton’s second time getting her “new” chemo so we were (and still are) trying to figure out the best combo for her pre and post chemo meds. She had a reaction to chemo where she gets itchy and has red cheeks and a little bit of swelling so we’re still trying to figure out the best remedy for the reactions/exactly what med is causing it.  

This admission started rough for her and had a lot of “I don’t want to be here”, “I want to go home”, “I hate it here”, and “Why is God doing this to me?” which is always hard to hear.  It was also hard because we knew that instead of going home when chemo was done we had to go to the hotel because she has radiation again Monday morning. This means we will be away from home for 2 weeks this time, which is always difficult, especially coming off chemo. 

But we are thankful that Jeremy, though he was away for an entire week last week, and had to work out of town (but local) this week, was able to come up and spend the last day/night in the hospital with as, as well as the first night/day at the hotel. We know this isn’t easy on him either, having to be away from us, not being able to help and be involved as much he wants to and used to be. And we know he also doesn’t really get much of a break either since he is either working, or when he isn’t working he is stepping up and taking over for me so I can get some time to rest and recover. This battle is definitely not easy on any of us, but Jeremy and I know we have continue to show strength for Hutton to see, no matter what, so she can continue to stay positive and strong as she continues her battle. And we have said it before and will say it a million times over, we would not be able to do this without the help of my mom, Huttons Mimi, at home to take care of the animals, take care of the house, pick up things for Hutton from her school, and just basically run the household while we are gone. 

WEEK 2 of 7

Well, we are almost done with Hutton’s second week of radiation treatments, and this is also week 2 of 7 that we will be living in a hotel by UCLA.  

We were fortunate that Jeremy was able to be off work for the first week, to be with us, help us get used to this new routine, and figure out the “lay of the land”. But now he has returned to work and it is just me and Hutton getting quality mother/daughter time. 

Overall, Hutton is doing great with the radiation treatments themselves.  She is able to sit very still through the treatment and stay calm while on the table. Unfortunately, she is definitely experiencing the side effects of the treatments. She is very tired, she has headaches, and her blood and platelet counts are VERY VERY low. But…one of the benefits of us staying in the hotel near UCLA, is that Hutton can get labs multiple times a week along with the needed transfusions, as to help keep her counts up, and hopefully not delay her scheduled chemo treatments. This week, her numbers were the lowest they have ever been (probably due to all of last week’s radiation treatments) and on Monday she got a blood and a platelets transfusion before her radiation treatment. She got more blood and platelets today (Wednesday) before radiation. So, we are hoping that will help with the headaches and keep her counts high enough to stay on her treatment schedule.  

All things considered, Hutton is doing wonderful and remains in good spirits. She is adjusting to living in a hotel and to daily hospital visits. She has had some rough moments, but has remained, overall, positive; and that light that shines from within her, though it may dim at times, it has never gone out, and always comes back shining brighter then ever. No idea how she can do that. She has set a daily example of strength and perseverance since she started this battle and continues to make us proud every day.

Here We Go…Again

The same…but different. 

We go back to UCLA Monday for chemo.  

Hutton was supposed to be done…but with the cancer still growing, we unfortunately need to continue her chemo treatments…and more. We meet with her radiation doctor this Monday as well, where we will find out if she will be doing 2 weeks or 3 weeks of radiation treatments, but we think it will only have to be two weeks at a time. 

This means, we will be at UCLA for 5 days (inpatient), where she will get both chemo and radiation every day. Then, we will come home for one day, then back for 5 days of radiation, which will be outpatient. For the outpatient radiation Hutton and Steph will need to stay in a hotel close to UCLA. The radiation treatments usually will be in the morning, but with the way traffic is to and from UCLA, we think it would be better for her to stay closer to her hospital until we have a better understanding of how her body will react to this new protocol. She will then get about a week off before, repeating the treatment cycle all over again. We are praying it will only be 2 weeks of radiation, otherwise we would be spending 3 weeks out of the month either in the hospital or in a hotel. 

This new chemo protocol has different (potential) side effects than the other chemo meds she has been on, and honestly they aren’t great. I mean none of the side effects are good but this new protocols side effects could more…permanent.

Hutton has been in such good spirits these past few weeks, and been able to do more and more, we are praying that she will be able to to continue this progress and since her body is used to going through chemo, it will be able to tolerate this new chemo as well, with no unexpected trips to the ER and unexpected admittances. 

Thank you for all the love you support you continue to show towards her and our family and continue to pray for Hutton as she begins this new treatment protocol. 

One Year Ago, Today…

1 year ago, our world was turned upside down. On September 6, 2024, Hutton’s doctor called me and told me that what we thought was a sprained hamstring was actually a tumor in her pelvis. I was 400 miles from home with Hutton at her Godmother’s house.  Hutton and I had traveled to San Ramon to see her favorite musician, Lindsey Sterling, in concert.  I had to text Jeremy and my mom the news because Hutton was next to me, and I didn’t want to alarm her. I remember praying so hard that the tumor was just a growth and not cancerous, but that obviously wasn’t the case.

1 year - 365 days - 8,760 hours. 

It’s crazy to think that a year ago, we were looking into the unknown, and today…We are in the same position…looking into the unknown. 

We don’t know why her cancer is growing and not shrinking.  We don’t know if she is going to do more chemo or if we are going to go another route, WE JUST DON’T KNOW! 

Over the last year, we have spent almost 100 days in the hospital. Hutton has had 56 chemo days. She has had a surgery that removed a third of her pelvis, including one of her hip sockets.  She has “coded”, been in a coma in the PICU (Pediatric Intensive Care Unit). She has been bedridden, and she has had to learn to walk again (we’re still working on that one). She has had to miss school, had to forgo birthday parties and social events. She has had to sacrifice SO MUCH, yet even through all this, she has, for the majority of the time, kept a smile on her face. That inner “light” she has has not dimmed, and still shines brightly, which should be an inspiration to us all.  

Our family has also had to sacrifice SO much, and we would do it over and over and over again for Hutton’s life. Whatever it takes to kill this cancer and save Hutton’s life, we are here for and we are ALL IN! 

The current treatment plan doesn’t seem to be working anymore, so again looking into the unknown waiting for what is next, and no matter what that may be…we are here ready to stand strong and fight with our all for her. There are some amazing treatments that we are looking into to add to what ever conventional treatment plan her doctor has planned…but they are unfortunately not covered by insurance, but we will find a way. We are committed to doing whatever it takes to eradicate this cancer from Hutton’s body and see her become the woman God has planned her to be. 

There are no words…

People say that, but really, there are no words. 

Last week, Hutton finished what was supposed to be her last 5-day inpatient chemo. Hanna from Childlife decorated her room, and she was supposed to get to ring the bell in celebration. The paper rings we made for her to rip after each chemo treatment, as a way for her to visualize how long she has left, are supposed to be down to one. This September, she should be getting her last 1-day chemo treatment, and then she will be done. We were planning her return to school, her return to….” normal”.

But instead, during her inpatient treatment this week, she had an MRI and a couple of days later had a biopsy procedure. If you’re thinking, “This sounds familiar,” you would be correct because almost exactly one year ago, we were in this same position.

It was supposed to be DONE! But it’s not, we are back to the beginning, looking into the unknown, and left wondering, Is she going to have to do chemo again? Are they going to do radiation instead…or both? WHY IS THE CANCER NOT GONE, AND HOW THE HELL DID IT START TO GROW?

There are no words, we have no answers, and it sucks. Hutton has been through hell, and the cancer is still there; not only is it still there, it is growing! COME ON! She had a crazy surgery to remove her cancer - almost half of her pelvis has been removed to get rid of it, yet the cancer is still there. The small piece that was left, and that they couldn’t get to, the doctor wasn’t worried about it. He said it looked dead and inactive…then in a few weeks, out of nowhere, it almost doubled in size…. WHYYYYYYY?!?!

Now once again, we are left sitting and waiting…waiting to hear the results of the biopsy, waiting for her to have another PET Scan, waiting to see if she is going to have another year of treatments, but this time more intense…in a single day, we went from seeing the light at the end of the tunnel, to seeing no light…hell we can’t even see the damn tunnel we’re in. 

So that is where we are…angry, frustrated, confused, and left wondering how and why…

Not the News We Wanted to Hear…or Share

This isn’t the update we wanted to share—and honestly, we’re still a little at a loss for words.

Up until now, every test and scan Hutton has had since starting treatment has shown nothing but good news. Her initial rounds of chemo worked better than expected, and each scan since then looked just as encouraging. She’s been feeling great, more active, and we were beginning to see the “finish line.” Just one more 5-day chemo, followed by a single-day chemo, and then she would be done—aside from routine PET scans every 3–6 months for monitoring.

So when she went in for her most recent PET scan, we weren’t overly worried. We were focused on finishing treatment and looking forward to her returning to school. Unfortunately, life has a way of kicking you in the groin right when you aren’t looking.

Before her admission today, her doctor went over the scan results. It wasn’t the news we hoped for—or anything close to what we wanted to hear. As much as her Dr  tried to stay positive, he was honest, as he always has been, and said plainly: “This is shitty.”

The scan showed that the small spot in Hutton’s pelvis is still very active and has grown. Even harder to hear, there’s now a new area of concern in her lung that needs close monitoring.

For now, the plan is for Hutton to finish this current chemo regimen (this week’s 5-day inpatient session and the final 1-day outpatient session we already had scheduled). After that, in about four weeks, she’ll have another PET scan and MRI. Those results will determine the next steps.

To be prepared, we’ll also be meeting with a  doctor this week to discuss possible radiation. If the cancer is still active and growing, the next phase could involve radiation combined with another six months of more aggressive chemo.

We are asking—once again—that you keep Hutton in your prayers. Not just for her scan results, but for her whole self: her mind, her body, and her spirit. She was so close to the end of treatment, so close to getting back to “normal,” and this setback has been hard for her to hear.

Thank you for walking this road with us, for your prayers, love, and support. We’ll keep you updated as we move forward.