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.

Life Is Hard, But We Keep Moving Forward

Life can be really hard sometimes. Cancer is hard. Chemo is hard. And going through both? That’s a whole different level of difficulty. It’s hard on Hutton, and it’s hard on all of us as a family. We try to stay positive, but some days—and even some weeks—just feel really hard.

This past week was one of those times. Hutton was supposed to have chemo on Tuesday, but her bloodwork on Monday showed her hemoglobin was too low. So instead of chemo, we headed to UCLA for a blood transfusion.

A day of chemo or transfusion means an early start—out the door by 5:45 a.m. to make it to UCLA by 7:30 a.m., hoping traffic cooperates so we can get to the infusion center by 8 a.m. On Tuesday, we got lucky and were in and out quickly with minimal traffic—but that’s not usually the case! Normally, we hit a bunch of traffic at least one way. We were really hoping that the blood transfusion would boost her numbers enough for chemo on Friday, but unfortunately, her labs on Thursday still weren’t quite where they needed to be. So, her chemo was postponed to next week.

Hutton only has three rounds of chemo left, and we had hoped to be finished by September. This delay means that might not happen, but that’s okay—even if it’s hard to accept.

Lately, Hutton’s been having a tough time emotionally. Breakdowns have become a regular thing—sometimes multiple times a day. It’s heartbreaking to see her cry and be upset, especially when she can’t even explain why she feels sad. Sometimes it comes out of nowhere, like when she suddenly started crying about our dogs passing away—something that happened years ago. We know these emotions are side effects of the chemo, and we’re here to support her no matter what feelings come up.

Physical therapy is another emotional challenge. She often cries through at least half of her sessions, and as a parent, it’s tough to watch. But we also know PT is helping her. She needs to relearn how to walk, even when it’s difficult. She usually has PT twice a week, and we’re so lucky her physical therapist is absolutely amazing—kind, encouraging, and caring, like she’s part of our family. After a tough first session this week, Hutton totally crushed it in her second one! She’s learning to use crutches and was able to walk around and even go up and down our many stairs (and if you know our house, that’s no small feat). Seeing her take those steps with crutches brought tears to my eyes—it was beautiful to watch her regain her independence and confidence.

We’ve also been trying to get her into the pool because we know how great it is for her, but at first, she was hesitant. Part of that was fear of the unknown—wondering how her surgical leg would feel in the water or if she’d be able to swim. But yesterday, she surprised us all and decided to give it a try. She took it slow, easing in gently, and then swam for hours! Hutton has always loved being in the water, and seeing her joy and confidence return while swimming was truly incredible. Her smile and sparkle said it all—she was alive and thriving in that moment, and it was the best thing for all of us to see.

Hutton still has a long road ahead, with challenges and uncertainty. She has a PET-CT scan scheduled in August, and we’re asking for all the prayers and positive thoughts we can get. After her surgery, doctors still saw a few small cancer spots remaining, and we’re praying this scan shows they’re gone.

Thanks for being with us on this journey. Every step forward, no matter how hard, is a victory worth celebrating.

Hospital Days, Hard Cuddles, & Hutton’s Big Heart

We headed up to UCLA last week for Hutton’s bloodwork, hoping she’d make counts so we could stay on track for chemo. We were quietly praying we could keep things on schedule and start her five-day round, but Hutton? She was not so secretly hoping her counts would be too low so we could head back home instead.

But the labs came back great—she made counts! So, five-day chemo it was. We even got our favorite hospital room and were surrounded by our favorite nurses, which made a tough week just a little easier. We knocked it out.

Usually, Hutton is super chill during hospital stays, but this admission was different. She was restless. She kept telling me, “I just want to go home.” And honestly, I felt the same. I didn’t want to sleep on that hard hospital couch, or be woken up every few hours, or fall asleep to the nonstop beeping of machines—but this is part of the journey. We got through it, just like we always do.

This time, Hutton needed extra cuddles. She kept asking me to lie next to her in the hospital bed and hold her close. And while I loved every minute snuggled up with her, it was hard. I could feel how much she was struggling, needing that extra love and reassurance just to make it through. She was having a tough time, and she needed me to carry some of that weight with her.

On our last day, as we sat on her bed waiting for her nurse to come de-access her port, she looked at me and said:

“Mom, I wish I didn’t have to get chemo. I wish I never got cancer. But if I didn’t, I wouldn’t have met all these nurses and all the people at the hospital. And I would’ve never found out that I love creating content for my YouTube channel.”

Cue the tears. 

This incredible child—who has endured so much—still finds light in the darkness. Always. She amazes me with her strength and her heart.

Once we got home on Saturday, she had a few days to rest. We really wanted her to feel well enough to go to the Descendants & Zombies: Worlds Collide concert—a dream night for her. She was doing great all week… until the night before the concert, when she suddenly came down with a stuffy nose. That same day, she also had her second physical therapy session—which is never easy.

PT is emotional. It’s frustrating for her. She knows exactly what her body used to be able to do, and now, it feels like it’s failing her. As a former competitive gymnast, going from total body control to needing help just to stand has been heartbreaking. But through the tears, she pushes through. She does every activity and exercise, because deep down, she believes she’ll walk again. And we believe it too.

The physical therapy session took a lot out of her, but even with the stuffy nose, she said she still wanted to go to the concert. And honestly, she seemed okay. The only reason we felt comfortable letting her go was because of our amazing friends—who are really more like family—who made it possible for her to watch from a private suite with her two besties. It gave her the space to enjoy the night safely, without being fully out in the crowd.

And she had an absolute blast. She lit up with joy and danced (in her wheelchair) her heart out… until halfway through the concert, when she called me over and whispered, “Dad, can we go? I’m really tired and the smoke is hurting my throat.”

This girl. Even in the middle of having the time of her life, she knew how to listen to her body and speak up for herself. She knew when enough was enough.

When we got home, though, the emotions caught up with her. She broke down, saying how sad she felt for having to leave early. She told me she didn’t really feel this way, but sometimes she just gets so sad and thinks her life is hard and miserable because she can’t do the things she used to.

And my heart just broke.

I held her close and told her it’s okay to feel that way. It is hard. She’s been through more in one year than most kids her age will go through in a lifetime. The pain, the frustration, the constant uphill battles—it’s a lot. And it’s okay to feel bad, sad, even angry about it. That doesn’t make her weak. It makes her normal.

But I also reminded her how strong she’s become. How resilient she is. How beautifully brave she is. And how every tear, every hard day, every obstacle—it's shaping her into someone absolutely unstoppable.

4th of July

Hutton has been doing great since her recent 1-Day chemo session and has also been eating like a champ. I have DoorDashed BJ’s chicken fingers, garlic knots, and a pizookie every night for a week straight. I had also gone to Yogurt Land everyday for the last week. So much so, that Steph found a soft serve ice cream maker on Amazon. I wasn’t going to buy it, but on about the 7 day of driving to Yogurt Land, I though what the hell. Well it was a success and Steph figured out a recipe that Hutton likes and it has been used every day since, so money well spent. 😀

This 4th of July Hutton was able to have keep her 10 year streak of spending the 4th of July with her friends and she had an amazing time!! We were able to get her into the living room today, which she has not been in since her surgery and this is all thanks to the amazing person who purchased the large ramp off her wish list. To whoever you are (There was no name in the packing list) THANK YOU!!!!

Hutton spent most of the day outside playing with the hose and throwing water balloons. She had a smile on her face all day, pounded a cheeseburger and corn, and said multiple time, “This is the most fun I have had since I started chemo.” 

It was a successful day and are thankful to be able to watch her play and act like a kid again and to see her smile from ear to ear!!

Her First Wedding

This week, Hutton got to go to her first wedding! A while ago, when her gymnastics coach got engaged, she asked Hutton if she wanted to be a junior bridesmaid in her wedding. Of course, Hutton said yes, then asked what junior bridesmaid was 😂

Last week was the wedding, and we were thrilled that she was feeling well enough to attend and participate. I cannot tell you how much joy it brought us watching her dancing in her wheelchair, laughing, smiling, and just enjoying herself. She had an amazing time and made some incredible memories. And of course, she had to film “content” for her YouTube Channel. (While you're there, Like and Subscribe ☺️)

It is a pretty long VLOG, but honestly, it’s worth every minute to be able to experience this moment through her eyes. We sent her all the videos and pictures she took, and she did all the editing herself. She definitely has an artistic eye and a very creative mind. Now, for clarification (because I asked her), she intended to record the ground as she was being pushed around because 1. She liked the way it looked and felt in the videos, and 2. In her words, “Some people may not want to be in my video, so I tried not to get their faces”. I ended up telling her that when you are in public, there are times when it is ok to get people in the background of your recordings, and it is only when you are recording them on purpose that you should make sure to ask if it is ok. She is always trying to do the right thing and thinking of others. She was very concerned while she was recording her “content” that she had to make sure to ask her coach if it was ok for her to post her content on her channel because it was her wedding. 

Thank you, Coach Danielle and Austin, for including Hutton in such a special day. It meant the world to her, and she definitely made some core memories that day. Congratulations on your wedding, and you will always hold a special place in our hearts. 

One More Down

Hutton is home from her 5-Day chemo treatment. This time I was able to spend the entire 5 days with her in the hospital, so that Steph could celebrate her birthday with a trip to the Grand Californian with her friends and a very special dinner at Club 33. I know she was anxious to let Hutton and I do chemo without her but it was important for her to get some time away to relax and re-charge.

Hutton did amazing this week. It is still tough on her because she still isn’t mobile and we are still trying work out getting her in home physical therapy because she can’t do it in a clinic (due to her compromised immune system) and it is tough for her to do any physical therapy while in the hospital because it hurts to use her arms to support herself standing while her port is accessed. It is frustrating all around, but we know and have explained to her how journey to  being able to walk again is going to be a long one. She understands that, but gets very frustrated as she has always been an independent and active kid. 

As much as being in the hospital is tough on her, it is always nice to see all the nurses who absolutely love and adore her and make sure to come and see her and say hi, even if they are not the ones treating her. Just another reminder of the light and love Hutton has continued to have surrounding her even during these hard times. 

Hutton has recently been really into Zodiac signs and what they mean. Before we went into the hospital she went to the bookstore and bought a couple of books on the subject. So, she of course brought the books with her and asked every single nurse who came to see her what their zodiac sign was and then read them some facts out of her book. All week different nurses were coming into her room asking her to tell them their zodiac sign and asked for some facts from her. Hutton absolutely loved it!! It’s moments like these that I am reminded Hutton is in the right place at UCLA. As hard as it is driving up there from Orange County, dealing with traffic and this week the protests and idiocracy that was happening in LA, the way the nurses know her, I mean actually know her, and treat her makes the time spent there a little easier. 

On a side note…Hutton has decided she wants to start a YouTube Channel. She is not sure what her “content” will be so right now it its videos she made teaching herself how to use iMovie, but she has BIG plans. So if you could head over to her channel www.youtube.com/@huttonstrong and subscribe it would make her day! I also added a link on the main page of her website. (And yes I have already had the talk with her about the internet and all the idiots on it and will be closely monitoring what she is doing). 

When the Unexpected is the Expected

One thing is for certain, you have to enjoy the ups, and prepare for the downs. 

Hutton was supposed to be in the middle of 5-day chemo right now…but she’s not.  Her numbers were too low to get chemo so she is off this week. She went in again for platelets and blood and we are  praying her numbers come up so she can get chemo next week. 

The plan was labs on Monday, talent show, then 5-day chemo Tuesday - Saturday but that didn’t happen. As disappointing as that is, we are extremely happy that even though her numbers were extremely low, she felt perfectly fine and was able to go to, participate in, and absolutely enjoy the talent show.   

Throughout her treatment process her numbers being too low has happened SO MANY times, causing her to have to wait an additional week for chemo, and every single time it is a huge let down. We know that there is a reason for this, even if we can’t see it, and a few of the times, the delay was also a blessing in disguise, but because this happens regularly, it is hard knowing that we can’t really plan for anything…and if we do plan, we have to be able to cancel last minute. We know it, we have done it, but this time it was harder. We were packed and we are ready to go, riding the high of Hutton eating well and feeling pretty good for two weeks. We are mentally prepared for being in the hospital for 5 days and all of what that entails and then we are paused for a week. Talk about frustrating. 

Especially because we have a lot of “things” going on in June. 

Steph’s birthday is June 10th. She has a birthday trip planned. Hutton is in a wedding, and I will be traveling for a week for work again.  That is a lot, not including the lab appointments, therapy appointments and all the other daily life THINGS. We had a great plan of attack that seemed to work perfectly. Steph would be in the hospital for the 5 day chemo, then once they got home, on the weekend we would celebrate birthdays (Steph and Dash), then I would work from home from Tuesday - Friday, while Steph got to take a much needed break, spend some time away and celebrate her birthday, then she would come home and I would be leaving the next week for business. Now that chemo was delayed, Steph seriously considered canceling her birthday trip to be in the hospital with Hutton for her chemo. But for the first time ever, Steph listened to me when I told her “No.” (just kidding…kind of 🤣 ) 

Since I was already scheduled to work from home, I just had try and move a couple other things around which would then allow me to be with Hutton at the hospital while Steph got the much needed break, as well as be be able to celebrate her birthday…and if you know Steph, you know how BIG of a deal that is. Thankfully, I was able to swap some things around to make that happen. But things like this are becoming common place during Hutton’s treatments, but that doesn’t negate the stress and anxiety it can cause. 

We, well Steph, tries to plan as best she can to keep things running smoothly and negate any additional stress, but as you can see that is extremely difficult. Even though we know that Hutton’s body typically needs 3 weeks in between chemo sessions to heal, we and her doctor(s) still push to try and make it only 2 weeks between sessions.  It was 2 weeks in the beginning, but now, even though she is feeling better and hasn’t had any issues or emergency admittances like in the beginning, her body just seems to take a little longer to recover…but that is ok, because in the bigger picture, we would much rather wait a week with her still feeling good, then having to rush her up to LA into the emergency room to have her admitted for 3-5 days and then start chemo, making it a 8-10 day hospital stay, like it was in the beginning.

I think we are just so ready to be done, especially Hutton, that we are hoping that we can do chemo every 2 weeks and just be done with it sooner than later, but that’s just not the case. And as frustrating as that is, we just have to remember that God’s plan may not line up with our plan, but He is playing 4-D chess while we are playing checkers. What that means is he sees things that we can’t and don’t and we have to trust that when things don’t go according to our plan, it is because He has a better one. 

Looking back on Hutton’s fight against cancer, it is 1,000% that He has His hand on her, guiding her and protecting her. So many things had happen exactly as they did, with ZERO deviation for us to be where we are now, and for Hutton to be doing as well as she is. Even the stressful and absolutely horrifying things that have occurred in her fight against cancer, all serves a greater purpose, even if we cannot see it now, we just need to try and remember.  

I know this is kind of a long update, but I wanted to again thank each and every one of you for supporting Hutton and out family through all this. We know you have your life battles, so it means everything to us that you take the time out of your days to keep up to date with how Hutton is doing as well as take time out of your days/nights to pray for her. It means the world to us to see how much love and support you all are showing Hutton, and we are forever grateful to each and every one of you, and one day I hope and pray to be able to repay you all in one way or another. 

May Smiles Shine Through!

May is almost over and what a month it has been. Jeremy went on his first work trip with his new company, Hutton had her first 1-day outpatient chemo, she also had her first PET-CT scan since her surgery, she did her last 3-day chemo, and she was able to attend the 4th-grade girl’s tea at her school, she lost a tooth, mom and dad were able to get a couple date nights in, mom was able to get a Disney day, and we celebrated Mothers Day (a week late). 

Jeremy traveling for work is a new thing for us, but being a former first responder family, we are accustomed to the unusual hours, missed holidays, and unpredictable schedules.  Add a kid who is going through chemo and all the unknowns with that schedule and it’s a lot. I know that I can handle everything with Hutton and between my mom and I, we can hold down the fort. We know the last thing Jeremy wants to do is be out of state or on the other side of the country during this time, but this “new” job was a BIG gamble during the start of this journey but, overall, has been more beneficial than we could have imagined, even if it does take him away at times.

With the end of 3-day chemo, we will now switch back and forth between 1-day (outpatient) chemo and 5-day (inpatient) chemo.  It’s so nice not to have to be in the hospital for 3 days but outpatient chemo is a DAY.  We have to leave the house early, drive to UCLA, get chemo, and then drive home.  It’s typically 5 hours in the car, in LA traffic…It’s a LONG day, but Hutton is excited not to have to be in the hospital as much, which is a win.

Hutton also had her first PET-CT scan since surgery and it went great!  She was smiling as she went under and was in a great mood when she came off her sedation. It really helps that she sees the same nurses, anesthesiologist, and support staff every time she gets a scan. She is still showing a small spot on her lung as well as a spot on the nerve in her pelvis, but her Dr is very happy with the scan and optimistic the chemo will be able to get rid of these last remaining spots.  

Her last 3-day chemo was better than any other 3-day chemo she has ever had. Typically 3-day chemo comes with the horrible side effects, (mouth sores, no appetite, everything tasting horrible, just feeling icky and sad) but this time she had none of that!  We have recently started giving Hutton organ pills, (thanks for the recs Julie) as well as probiotics and I really think that has helped in making the chemo recovery so much better.

We finished chemo around midnight and headed home because Hutton was determined to attend her 4th-grade girl’s tea.  We cleared it with her Dr and he was so excited for her to be able to attend the tea party. Before the tea party started, we were able to have coffee (and a smoothie for Hutton) with her amazing preschool teacher, Mrs. Shields.  It was so, so good for Hutton to see her!  When Hutton first got to the tea she was super nervous and didn’t want me to leave her side but a few minutes into it she was rolling around with her besties passing out Hutton Strong bracelets to all the girls and I didn’t see her again until it was over. 

It was so good for her to see her classmates and friends again after not seeing most of them since before she started treatment in October.  She is so worried about not being able to be “social” since she hasn’t been around her peers in so long, but attending the tea and interacting with her classmates and friends really made her realize she will be just fine when she goes back to school. We are praying the “Good Vibes” will continue through the remainder of her treatments and as she begins to work on her mobility and having to learn how to walk all over again.

Come What May….

Sorry for the delay in updates, April was a whirlwind month! We had Easter and birthdays all over the place. To top it off, Hutton was supposed to start a new chemo schedule, but it didn’t go as planned.

In the beginning of April, she went for her 5-day chemo, but her numbers were too low. She needed platelets and blood, and then had to wait a few days for her numbers to come up before she could start.

After that session, we basically spent over 2 weeks watching her like hawks, on edge. We didn’t want her to have to be in the hospital on her birthday. She did really well after that session and was doing great. Then, on the Thursday before her birthday weekend, she went for her labs, and her numbers came back really low. Steph had to take her up to UCLA for another platelet infusion. This worries us because her numbers were so low that even a slight temperature could have led to admission. But thankfully, she didn’t have one, and she was able to have her infusion and come home.

We’re also so grateful that even with her numbers being as low as they were, she was feeling fine and acting normal.

That weekend, she was able to have a small “party” at Nordstrom Cafe with some friends. She was super nervous because she hasn’t been around many people or seen her friends in person in a while. She asked me to sit next to her the whole time, but after a while, she warmed up and was back to her usual self.

On her actual birthday, she was able to go out with her “besties” for her special day. I had to be at work for this one, but when I got home and saw her, it was like she was a completely different person. She was so happy! Seeing her like that just warmed my heart, and I thank God for putting her “besties” in her life before her battle with cancer. They definitely put a sparkle in her eye and bring her back to life.

So, this Tuesday, she went back to UCLA for her one-day chemo session. But guess what? Her numbers were low again, so she had to get another infusion and was sent back home. She’s been rescheduled for May 6th. This one-day chemo session is new to us, and we’re not sure how her body will react. On top of that, I had to travel for work and will be on the other side of the country for 4 days before and on the day of her treatment. But hey, I’ll be back late that night, but I’ll have an immediate late night for work the next day, so Steph has a lot on her plate this week. But I know she can handle it all! She has Mimi, her friends, and you all to support her if she needs anything.

Once we have a better understanding of this one-day chemo and her new schedule, we can hopefully figure out when the chemo will be complete. But before that, we need to keep our fingers crossed that her scans (which she’s scheduled to get on May 20) show that the surgery was successful, that her chemo treatments are still working, and that there’s no cancer left in her body!

Not According to Plan….As Usual

Well this week did not go according to plan., Hutton was supposed to be admitted on Wednesday for another 5-day chemo session. She had a pretty rough week after her last session and we could tell she was feeling bad and was pretty sure her numbers were going to be low, as she spent Saturday and Sunday with a really bad headache, and was very sensitive to light. She went in on Monday for labs, and we assumed they would be low and things would change…and they did. 

We received a message on Tuesday letting us know that her numbers were super low. When I say super low, I mean she had zero white blood cells. With me being stuck at work Steph loaded her into the car early that morning and headed up to UCLA for not just a platelet infusion but also blood, which would be an all day event, and putting them smack dab in the middle of rush hour traffic on the way home. For LA that means a normal 50-60min drive takes 3 hours (not exaggerating)

Steph did an amazing job handling that day all by herself, spending a total of 5 hours in the car. As much as it sucked, it was a great “test-run” for when Hutton starts her 1-Day sessions, which will take place of her 3-Days. 

Hutton has been feeling much better since the infusions, and we will be getting labs again this Monday with the hope that they will be high enough to continue her chemo treatment Tuesday. 

We are thankful though that she as able to be home to celebrate my birthday, because that was one thing she was really worried about. 

With her birthday at the end of this month, we are praying that her numbers stay up after this treatment and that nothing unexpected happens to cause her to be admitted and be in the hospital on her birthday. She has already said she really hopes she doesn’t have to, and we have told her we will do everything we possibly can to ensure that doesn’t happen. So if you are reading this and are the praying type, please add that to your prayers…and if your not the praying type, it still wouldn’t hurt :-)

Last Week…

Last week was full of really high highs and really low lows.  

Hutton was supposed to start her first 5-day chemo since her surgery on Monday, but her numbers weren’t where they needed to be, so she couldn’t start until Wednesday.  This gave us a day on Tuesday to have a little family day.  Hutton wanted to go to Nordstrom for chicken fingers and then to Barnes and Noble and Target, so that’s what we did.  

It was so nice to spend time as a family.  We were also able to pick up a little birthday present for Mimi.  April is our big birthday month; me, Mimi, and Hutton all have birthdays in April! 

On Wednesday, it was back to UCLA for Hutton and Steph for Hutton’s 5-day chemo.  Typically, 5-day chemo is the “easier” of the chemos for Hutton.  It doesn’t bother her taste buds as much and doesn’t make her feel as horrible as the 3-day chemo does.  

Day 1 didn’t start until very late in the evening, so Hutton slept through her pre-meds, chemo, and post-meds.  The next day, Thursday, we woke up to sad news.  Steph’s grandmother, Nana, Hutton’s great-grandmother and Mimi’s mom, passed away.  We had been preparing Hutton for her passing, and she was able to FaceTime with her on Tuesday…but it was still very hard on her.  

When Nana was unable to live on her own, she moved in with us and lived with us for almost 4 years.  As challenging as that was sometimes, we are thankful that Hutton and Nana were able to make so many great memories together.  This is, however, the first death of a human Hutton has experienced; combine that with the emotions and everything else that comes with chemo… it has been extra hard on her.  Day 3, however, was a little better, and she continued to get better with days 4 and 5. By day 5, she was just ready to be HOME. I was able to leave work on Friday and drive up to spend the weekend in the hospital, giving Steph a little bit of a break during the evenings, but Hutton is just wanting to be home and not be in the hospital, which we completely understand.  Even after the long stay she did post surgery, though she was intubated for the majority of it, having such a big break from chemo, she needs to get back into the “hospital routine,” which, of course, like starting any new routine over, is difficult. 

She still has about 8 or 9 more sessions of chemo before she is “done”.  But what makes these chemos more difficult is that she is still recovering from her hemipelvectomy, and is not mobile. She is still confined to her bed, but is getting a little more mobile every day. More importantly, pain management is going great. She is, however, having a very hard time with not being independent.  She can’t walk, and she needs help to do everything, which, for a young girl we have raised to be fairly independent, is very difficult for her.  But she is looking at things in hindsight and learning. Before her surgery, as she would recover from chemo, she would want to stay in bed and have everything brought to her. We told her multiple times she should get up and out of bed as much as possible because she wouldn’t be able to for a while after her surgery. She, of course, still did not want to and complained every time we forced her to. Well, the other day she looked at me after I helped her out of bed and said, “Dad, looking back, I wish I had gotten out of bed and walked more like you said before my surgery.”  Little lessons during trying times. 

For her next scheduled chemo session, she is supposed to go in and get another scan done. She is so close to the “end” of this battle, we are praying that this scan will show that the chemo is continuing to work, that she is 100% cancer free, and there won’t be any additional treatments or any “delays”. In these trying times, God has been great, showing his presence in many different aspects of this fight, from all of your love and support you have shown her and all the prayers she receives and continues to receive. We know He will use this journey to do so many amazing things for Hutton in her future. 

Please continue to pray for her during this time, and that the scans return nothing but good news. 

The Ups & Downs…

This past week of recovery from her 3 -Day Chemo was a difficult one. The 3-Day chemo is always the hardest on her because it really affects her tastebuds and eating. For 2 days she had a massive headache and only ate ice chips.  So after not eating for a couple days, she started venturing out to try things again, and one of the things she was craving for 2-days was Baskin Robins ice cream cake…not so much the ice cream part, but the cake. So, one night at 7:30pm when she asked for it, off I went to Baskin Robins. 

When I brought it home she ate all the cake part, the frosting, and two small bites of the ice cream. This was a win…or so we thought. Because a couple hours later Hutton puked and had other stomach issues. Pretty sure it was food poisoning as she exhibited all those symptoms. Thank God, she did not spike a fever, she was just miserable as we all know how food poisoning makes us feel. After a very rough night, the very next night she was in pain. She had not taken any of her pain medication because she was afraid they would make her puke. But after getting up every hour to rub her back (because she would wake up in pain), at around 3am, I finally convinced her to take one of her pills, and she was able to get some sleep. Thankfully that was the little confidence she needed to start taking her pain medication again, but she still wasn’t eating. We think this bout of “food poising” affected her lab counts, because we got word that she was low, and had to take her up to UCLA for a platelet transfusion, which she hates to do. The good news, was that on the way up to UCLA she mentioned she wanted to try In-n-Out when she was done. So before we jumped into the 3 hour trip home (and yes, I am not exaggerating on that time) we stopped and In-n-Out and she ate like a champ, thus beginning her turn back uphill.

She has been eating much better now, and Steph even got her outside for a few hours where she rolled herself around the back yard, and figured out a way she could play fetch with the dogs. The last 3-days she has asked to spend an hour or so outside which we are so happy about and can see how much better that makes her feel.

Her next chemo session, which will be her 5-Day,  got pushed to this Wednesday, so as long as the labs she gets on Tuesday are good, she will only be off schedule by a couple days. We are still praying for the chemo to be as effective as it has been, and that these upcoming rounds will come and go with no unexpected trips to the hospital.

As far as her mobility, she is getting better and stronger every day. She still cannot move too much on her own and is unable to walk, but her pain seems to be well managed and she continues to make small incremental improvements. She still has a long road to recovery so we are praying or strength and the ability to celebrate the small wins.

The Hardest Week…With the Best Ending

I’m not gonna lie this is HARD. Seeing your only child recover and heal from a MAJOR surgery is hard.  Doing it with a pulled muscle in your back is even harder.  

I don’t think Jeremy or I realized just how hard this recovery was going to be.  The anticipation was that she was going to have the surgery and be walking and able to get herself to the restroom within a week.  That did NOT happen.  We are 3 weeks out from surgery and she still cannot stand on her own.  She is basically bed-ridden and needs at least one (preferably two) adults with her at all times.   She is most comfortable in her hospital bed slightly reclined with her legs stretched in front of her.  She can get herself to the side of the bed (with assistance) but it’s a TASK.  Standing is a whole other story.  

As a mom you take care of your babies.  Knowing that I cannot care for my only baby alone is a devastating realization.  It takes two adults to care for Hutton right now and on Monday she starts chemo again.  With Jeremy at his new job Hutton and I have been doing chemo and the hospital with just us.  We have been able to do it and we have been crushing it (with the amazing help of her nurses). But going into this next round of chemo the logistics are different.  While we are in the hospital we’re good.  The nurses and I got it, we can handle it but coming home is a whole different story. Typically we finish chemo late (like 1am late) and we leave right after because of traffic.  The nurses know this and are totally supportive and know that we would rather leave at 1am than stay and leave in the morning and hit traffic. The reality now is that I can’t get Hutton into the car by myself.  So Jeremy will be driving up to help get her in the car, and then right back home, only to have to go to work in a few hours. I’m sure there are people at the hospital that could help, but they way Jeremy figured works best getting her in and out of the car, she needs both someone strong to pick her up a certain way and someone she trusts. 

Accepting that I cannot care for my child by myself is a whole other level of HARD. I am her mom, I can do anything but lifting her into the car without hurting her…that I cannot do and that is a hard pill to swallow.  Jeremy is the strength, he can lift her into the car and get her settled. 

This is going to be a very long road to recovery where both ourselves and Hutton we will be facing new challenges. We continue to ask for your support and prayers for strength and endurance for us and for Hutton prayers for strength, peace, and understanding. She is having a hard time accepting as she put it the “loss of independence” and that she needs help to do just about anything. And she is starting to ask why. “Why do WE have to go through this?”. “Why is God doing this to US, WE didn’t do anything wrong?” We answer the best we can, but how can you explain to your 9 year old a concept you are struggling to understand yourself?? But we do recognize that she always says “we” and “us”and never “I”, she has never thought of it as just her going through this and that is a blessing of sorts. She knows we are going through it together and that she is not alone. 

But even with all this going on, Hutton knew that she had been chosen to be the Honorary Kid Captain for the UCLA Gymnastics meet on Sunday March 10. The entire week leading up to Sunday we did not think she was going to be able to attend.…or want to attend. But later in the week when she told us she really wanted to go, we did everything we could to make it a possibility, even if it meant she could only be there for a few hours. 

Well, it was an absolute dream come true for Hutton!! She got to meet the UCLA Gymnasts, including her favorite Jordan Chiles. She also got to watch their practice before the meet from the floor and pass out her Hutton Strong bracelets and stickers to the team. Even better, she was able to invite some of her besties, teammates and coaches to join her!! It was an amazing time, and something positive she desperately needed. Even one of her doctors showed up to see her to say hello. 

This one night was a good reminder that even amongst a sea of bad…good will find a way to always shine through. 

Finally Home

HUTTON IS HOME!!!!! After 19 days in the hospital (5 of them in the PICU) she is HOME!

This was the longest and most challenging hospital stay thus far.  We started this journey on February 13 with her hemipelvectomy surgery to remove not only her cancer in her pelvis but 1/3 of her pelvis as well.  The surgery was a success and went as planned.  The recovery was a different story….the epidural that was placed while she was under for surgery did not work and managing her pain was a struggle. This led to her oxygen levels tanking thus her coding, being intubated, and transferred to the PICU where she was for 5 days. Since there is no PICU at Santa Monica UCLA (the hospital where her surgery was and where her recovery was supposed to be), she was transferred to Ronald Regan UCLA in Westwood (our normal hospital). This was ended up being such a blessing because Ronald Regan is our HOME.  We know all the nurses and doctors, and more importantly they KNOW Hutton. They know her quirks, they know her likes and dislikes, they know her besties names, they know her pets names, they know the games she plays on her iPad, they know the shows she likes, they know her! This made her recovery so much smoother. She still has a LONG way to go, but she is home and we are just so so glad she can be home until she starts chemo next week. 

Thank you to every one who has reached out and continues to help and support Hutton in her fight against cancer. And to everyone who has “silently” supported we thank you too. Please continue to pray for Hutton, that she can recover quickly and with minimal pain, and that her body, mind, heart, and spirit will stay strong as she begins fighting 2 battles at once, starting her chemo treatments again and her physical therapy to be able to stand and walk on her own again.