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
This smile is everything!
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.
Where To Even Begin…
Hutton went in for her hemipelvectomy surgery on Thursday 2/13. The surgery went great. They were able to remove what they needed and everything looked great.
When she woke up from surgery she was having a hard time managing the pain. Long story short, they were unable to manage her pain and she ended up having to be intubated and transferred to the PICU at Ronald Regan UCLA. Her surgery was at UCLA Santa Monica and they do not have an PICU (Pediatric Intensive Care Unit) so when things took a turn she needed to be sent to Ronald Regan UCLA in Westwood. I doubt we will ever get the image of what happened after they called the “code blue” out of our heads. I have seen a lot of horrible and traumatic things in my life/careers and that immediately jumped to the top of the list and I would not wish that experience on my worst enemy.
Hutton was sedated and had the breathing tube in for 2 and a half days. The longest 2 and a half days of our lives. While she was sedated they were able to re-place her epidural with one that actually works and her pain is actually being managed! Praise God!
She is still in the PICU and she is making great strides in her recovery. Hopefully we will be out of the PICU in the next day or so and we can go down to her “normal” floor.
As most of you know, Ronald Regan is our “normal” hospital where she sees her doctors and gets chemo. All the nurses and a lot of staff from the pediatric floor know her so well that when they heard the was she was in the PICU came up to offer their support, love, and prayers.
As horrible as the way this move to Ronald Regan happened, we believe whole heartedly that this is the right place for her to complete her recovery after surgery versus being at Santa Monica.
We want to thank everyone for their support and prayers. This was definitely an event that was not expected, one that will affect us in the future in ways we do not know. Luckily for Hutton, she does not remember anything and was actually very confused as to why we had changed hospitals and how it was now Wednesday when just “yesterday” I told her it was Saturday. When I explained it to her, her response was, “So I time traveled into the future!”
…that may have been the ketamine still talking.
The ‘S’ Word…
Hutton’s big surgery is scheduled for tomorrow. This is a BIG surgery and we are all pretty nervous. It is a minimum 5-hour surgery and they will be removing a large part of her pelvis as well as her hip socket. So maybe nervous isn’t the right word, but not sure what that word would be.
Hutton has been pretty calm about the entire thing, but after our appointment with her surgeon on Monday you can tell she is nervous. She asked her surgeon some excellent questions and he did a great job answering them in a way she could understand, but you could see her brain working and could tell she was weary, and I am sure that will be 100x over tomorrow morning.
Because this is such a big surgery, her recovery will be a long and slow road that will impact her for the rest of her life. One of her legs will be shorter than the other due to not having a hip socket. There will be lots of physical therapy and learning how to do things differently. We try to see the “light at the end of the tunnel” but the reality is, even after she wins this battle with cancer, she will be fighting the war for the rest of her life having appointments and scans to ensure it does not come back. But we are here for her and God is with her always.
You all have done so much, and have shown her so much love and support, and we ask that you take a few moments out of your day tomorrow morning and pray for our sweet miracle baby. Pray for her surgeon and his team, and that God has his hands on him guiding him in what he does. Pray for Hutton, so that she will have a feeling of peace over her mind and heart as she comes out of surgery and during her recovery, and for God to keep His healing hands on her body, mind, and heart.
The Pink Purse
When we were in the hospital in December, Carina from Child Life at UCLA came to Hutton’s room to see if she would like to go and “shop” for Christmas presents for her family in their “store”. Hutton’s nurses unhooked her from all her lines for a little bit so that she could be completely free while she shopped. Carina, who is a literal angel of a human, shopped with Hutton while I waited outside.
Hutton was able to shop for me, Jeremy and Mimi. The items she picked out were wrapped and then delivered to our room later in the day. When I asked her how it was, she was nervous that we wouldn’t like what she had picked for us.
Fast forward to Christmas morning. She was so excited and nervous to give us our gifts. She picked this pink purse for me. “It’s pink and sparkly mom and you love purses and pink and sparkly!” This is true. I do love purses and I do love pink and I do certainly love sparkly!
Last night, Jeremy and I were able to sneak out for an early valentines dinner and of course I carried the pink purse. When Hutton saw that I was carrying it, she got the biggest smile on her face! I will forever cherish this pink purse and the fact that my beautiful daughter picked it out for me while going through chemo.
Sunday Gunday - Performance Pistol Charity Class
Yesterday was such an incredible day out on the range! @zedi_shoots hosted an amazing Performance Pistol Class, and every penny of the class fee was donated to support Hutton in her fight against cancer. We had 18 awesome participants who chose to come out, even though it was Super Bowl Sunday! I even managed to squeeze in a few rounds myself.
On top of that, we had an amazing raffle! A huge thank you to @cardboard_assassins for dedicating hours last Saturday and Sunday at the @Ohshoot_SC matches to sell raffle tickets. Thanks to all the competitors and class attendees who purchased tickets, and to the generous companies (listed below) who donated prizes. A big shoutout to the individual(s) who also donated personal items for the raffle.
And a HUGE thank you to Susan, who made this such a successful event, keeping everything organized and really made it what it was.
It was truly humbling to see the overwhelming support and love from the shooting community. Hutton absolutely loved seeing all the photos and hearing how so many people continue to send their love, strength, and prayers. Thank you all so much!
#huttonstrong #fuckcancer
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📸: @mizzjewelz / @huttonsea / Susan
Life Lately…
Where to begin? We are 11 days out from Hutton’s last round of chemo. I say “we” and it sounds strange but it really is WE. It is Mom, Dad, Hutton and Mimi all being 11 days out from chemo. It takes a village and Hutton’s fight against cancer takes an ENTIRE VILLAGE (you all included!).
So 11 days out..days 1-10 her numbers drop. These are the days filled with additional worry and vigilance, keeping a close eye on her. Days 10+ her numbers start to increase and stabilize and she starts feeling good again. For Hutton, if you ask her how she’s feeling, she will say she feels good, and then in an almost annoyed voice (probably because we ask her multiple times a day) she will respond, “I never felt bad!”
The main way to tell if she is actually feeling good is by how she is eating. Currently, she is eating like a teenage boy which is AMAZING! Her current favorites are Stefano’s ham with Mimis (my mom’s) mashed potatoes, and crescent rolls. She eats this multiple times a day and we absolutely love it! She is also big into Baskin Robbins ice cream!
She is already making alllll of the plans for when she is done with chemo and can be free to leave the house. Travel, theme parks, and finally getting her kitten…ALL the things and we LOVE it! We love that she sees the light at the end of the tunnel. She knows she has lots of catching up with school, but she is so excited she is almost DONE! We are hoping that this optimism continues after surgery…
Her surgery is scheduled for February 13th. Her surgeon will be performing a Hemipelvectomy. He will remove her (dead) cancer in her pelvis along with a portion of her pelvis, as well as her hip socket. It is a very intense and scary surgery as well as an intense and rough recovery. We are praying for the most favorable outcome, but to be honest with everyone, we are SCARED. How could we not be? But we are NOT letting Hutton know this, and we know that God has us. He has shown His presence from the beginning of this thing, He has been with us every step of the way, and He will not leave nor forsake us….but as parents, it’s still scary as hell.
In other news….
The Stripes of a Warrior race last weekend was amazing!!! It was so great seeing everyone in person and Hutton loved seeing pictures of everyone wearing Hutton Strong shirts. Thank You, Thank You, Thank You!!
We still have a small amount of shirts and LOTS of bracelets available to order. If we have enough interest we will do another sweatshirt order, so if you would like one please, fill out the Continued Interest Form.
We also added another charity event to the Events page. It is a Performace Pistol Class, being taught by @zedi_shoots. He is a good friend and is a Jedi Master with a pistol. He rarely does group classes, so if you have a solid understanding of firearms safety, and shooting fundamentals, and are proficient in “working from a holster” then this is a class you want to check out. There is also a raffle that will be held, so if you don’t want to shoot, feel free to come out, hang out, and participate in the raffle. (Make sure you bring hearing protection, it is after all on a range)
We have said it before, but the amount of love and support you all have shown, and continue to show is both humbling and amazing. We Thank You, We Appreciate You, and honestly, we only ask for your continued prayers as Hutton begins what we hope to be her last major challenge in her fight against cancer.
Another Mountain to Climb…
Today is Day 5 of Hutton’s last 5-day Chemo treatment…for now. This week was a bit different. I started a new job, so Steph and Hutton had to go to the hospital alone and were there on their own for most of this session. I was able to be there on the weekend, but I was not there for most of it. This is going to be our new normal and is going to take some getting used to. I really hated not being there, and even though I knew Steph could handle it, I wish I could be there every moment of every day.
This 5-day chemo session is her last chemo session before her surgery, which should be happening either at the end of this month or early February. It will depend on how long it takes for her numbers to get back to levels where her body can handle the surgery, as it is a major one.
The surgery is called a Hemipelvectomy, which is a pelvic resection. It is a surgical procedure that involves the removal of part of her pelvis and her hip socket on one side. It is a minimum 5-hour surgery to remove the tumor and all the dead cancer cells. Her doctor told us that if Hutton were his child, he would only want 1 of 2 surgeons in the world doing this difficult and complex surgery on her. By the Grace of God, we are able to have the surgeon who he believes is the best in the world to do it. This surgery will allow her to keep her leg, though it could be a little shorter than her other leg once she is all healed. She will be spending a few weeks recovering in the hospital before returning home for a little break before she heads back to the hospital for more chemo and physical therapy. She will also be required to do some physical therapy while recovering at home.
This is one of the last big mountains Hutton is going to have to climb in her fight against cancer. Without going into all the details of her recovery, I will simply say that it is going to be both mentally and physically challenging for her. Please continue to keep her in your thoughts and prayers.
Record Broken…7 Days!
7 Total Days spent at UCLA Medical Center, which is a new record for us 🤣
While admitted Hutton’s numbers had been slowly improving. Unfortunately, since we were admitted to the hospital we missed our appointment with Hutton’s surgeon. Her team was trying to arrange for her surgeon to come to the hospital to meet with us but due to the fires and scheduling, they just couldn’t make that happen. Luckily her team of doctors were able to work things out and her PET Scan which was scheduled for next week, they were able to get done while she was admitted.
We were supposed to also roll into a 5-day chemo session (which would have put us in the hospital for 12 days), but Hutton’s numbers were still too low. So, they sent us home for the weekend!! We will have 2 days home before heading back to hopefully meet with her surgeon, get labs, and start her 5-day chemo session. Which should be the last round of chemo until her surgery at the end of the month. We are praying to be able to keep this surgery date 🙏
Being in the hospital for that long definitely started to take its toll on Hutton (and Steph). I made a couple of “re-supply” trips as we did not know how long we would be there in total and we initially only grabbed a few day’s worth. We had forgotten to grab her homework, which while we were there Hutton was super excited about. But when we got home today she told me, “Dad, can I tell you a secret…I was getting so bored in the hospital I kind of wish I had my homework to do.” Then she sat down and started doing some of it 🤣
Now for some good news, and not-so-good news.
Good News: Hutton’s MRI and PET Scan showed that her tumor had significantly shrunk in size, and they could no longer detect the small malignant pieces in her lungs!!!! The official results read, “Favorable Reaction to Treatment”. All praises and glory go to God!!
Not So Good News: We spoke to one of the doctors on her surgery team on the phone. Apparently the surgery is a pretty intense one. Without going into all the small details, they are confident that they can remove all the tumor/cancer without permanently impacting her ability to walk, but because of the location in her hip, it is quite a long and difficult surgery to perform, as well as a long and difficult recovery which will require a few weeks in the hospital post-surgery, no walking, and what can be some difficult and painful physical therapy.
So please keep praying hard!! We still have a few difficult mountains ahead to climb, but with your continued love, support, and prayers, and by the grace of God, we will reach the top!
2025…Here We Go!
Well, 2025 is off and running isn’t it🤣
We are very grateful that Hutton could stay healthy enough to spend Christmas and New Year’s at home. Because trying to rush to the emergency room during that time did not sound like a good time. We were concerned about New Year’s since that was after her 3 Day Chemo treatment because as we have said before that is the hardest on her little body.
She was able to make it through the new year doing well but having issues with food tasting good (which always happens after her 3 days). Other than that no real problems. So, on Thursday, Steph took her in for her labs to check her levels. The tests showed they were low, but what the doctors were more concerned about is there were no platelet numbers. So another lab was ordered for Friday. Hutton did an amazing job dealing with getting “poked” twice in two days. Unfortunately, her numbers had gone down, so off to UCLA to get platelets. Since I was at work, Steph and her mom took her up to UCLA for a platelet transfusion. While up there they took her temperature which was 100.1º which technically isn’t a fever but because her numbers were so low it could cause a serious issue without warning. Now here is where the adventure begins:
With the temperature they wanted to admit Hutton for IV Fluids and antibiotics as well as a blood transfusion, but there were no beds available at UCLA in Westwood so they transferred Hutton (and Steph) by ambulance to UCLA Santa Monica. At this time Steph’s mom took her car and returned home, while I got off work, went home, gathered all our hospital stuff, and headed up to meet them.
Hutton was in good spirits and received her transfusion. More importantly, she was able to finally watch Mufasa 🤣
As we were preparing to go to bed, we were told that a bed opened up back at our UCLA Westwood so they would be transporting her back for the remainder of her stay so she could stay under “her team”. Transport arrived around 2:30 am and we were in a room by 3:30 am. Luckily Hutton was already asleep and pretty out of it for that entire time.
Labs this morning have shown a slight improvement in her numbers and she hasn’t had a fever over 100 since last night. All good things! And on that positive note, we got our favorite hospital room when we came back to Westwood! Yes, that may sound weird, but when you spend as much time as we have in the hospital staying in all the different rooms, you find one that you like. We were also joking with the nursing staff about how being at a different facility felt weird and we felt like we were back “home” once we came back to Westwood.
Hutton has a big week ahead of her with an appointment to meet with her surgeon on Monday(not sure if we will still be here or have to drive back up that morning), she gets re-admitted on Thursday for her 5-Day Chemo treatment and ends that visit with a PET Scan. Please pray that she continues to stay in good spirits during this long week. She has been putting on a brave face and staying resilient and strong, but it has definitely been taking its toll on her.
Thank you all for your love, prayers, and support.
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And don’t forget to order your Hutton Strong Shirts and hoodies!!!
