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!!!
Hutton Strong Shirts
Hutton Strong Shirts
Many people have asked if we would create t-shirts to purchase to show their support for Hutton. With the help of some amazing friends, we finally have a way to make this happen!
If you want to purchase a shirt or sweatshirt click here or select the Hutton Strong Shirts button on the home page.
Orders will be taken until January 12, 2025. Once we have received all orders and payments you will be contacted when your order is ready for local pick-up and/or has been shipped. (Lead time is approx. 1-2 weeks)
Pricing (+ $10.00 for shipping):
Adult t-shirt: $25.00 ea.
Kids t-shirt: $20.00 ea.
Hoodie: $40.00 ea.
Cash or Venmo will be accepted. Venmo information will be provided via email once you have submitted your request.
In the Messages section below, please indicate the number of shirts and/or hoddies and size(s)
Local pick-up will be available. If you need your order shipped please include your mailing address
Example: 2 Adults: 1 Large, 1 Medium | 3 Kids: 1 Large, 1 Medium | 1 Adult hoodie.
Shipping Example: 2 Adults: 1 Large, 1 Medium | 3 Kids: 1 large, 1 medium | 1 Adult hoodie. Mailing Address: 123 Main St, Anycity CA 78910
We are working to have them available for everyone who purchases one to wear while participating in the Stripes of a Warrior’s Super Warrior 5K Run.
All funds raised through sales (excluding shipping costs) will go directly to the Duenas Family to aid in medical bills and other expenses related to Hutton’s treatment and care.
Merry Christmas!
Sorry for not posting an update since Hutton’s last treatment date….but that was intentional. You see, I was reluctant to write and post an update after she was released and before Christmas because I did not want to jinx anything. Is that superstitious…yes. Was I thinking logically….no. Is the end result simply confirmation bias…probably.
I wanted to do everything I could to set her up for being able to spend the holiday(s) and Christmas as “normally” as she could, which meant her not having to go back into the hospital for any reason before she needs to and especially so that she was not in the hospital on Christmas. Which is what we prayed for every-single-day.
I know I have written before about focusing on the things I can control and trying not to think about the things that I cannot…and it helps 99% of the time, but it is still stressful and taxing going to bed at night, and not knowing if I am going to wake up to Hutton having a fever and needing to run her to the ER. I can only liken the feeling to being deployed overseas and “crossing the wire” or every day working as a police officer (IYKYK). You try not to focus on the unknown that could happen and lean heavily on all the preparation, training, and planning prior to increase the odds of a positive outcome…but the thought, the knowing, the worry, is always there in the back of your consciousness. And I literally prayed every single morning that she would stay healthy and strong throughout these 12 days before Christmas.
It is now Christmas.....so to update everyone (Fair warning this is a long one):
Hutton was released from her 5 day treatment around 10pm on December 14th. Her blood count was on the borderline low, so she had a blood transfusion prior to being released to get those numbers up and hopefully be able to last the 12 days she would be home. Well, she made it and was in great spirits!! She has been eating well (on a Wendy’s kick) and is being her normal crazy, wacky, and sassy self which is such a huge blessing. She had to get labs done mid-week to check her numbers, which she was not happy about. We chose to take her to Quest, which meant getting “poked” to draw blood, rather than making the drive up to UCLA and having them access her port. She was very anxious because she does not like getting poked (what child does) but she was very brave and did an amazing job. We are so proud of how much bravery and strength she is developing being put through everything she has had to go through.
I came home from work one day and she was very excited to tell me how she scared her mom, so of course, I tried to make it worse, and told her she should set up her iPad ad record her scaring her mom. Well that completely backfired, and now, every day when I come home she tries to record scaring me on video. Little prankster 😍
The Saturday before Christmas, her Gymnastics gym did a “drive-by” Christmas celebration for her. Before their annual Christmas Team Party, they met up, decorated their vehicles and then drove by the house to wave, say hi, and wish her a Merry Christmas as she watched, bundled up, from the bed of my truck with her coach. It was very sweet of them and she enjoyed seeing the love and support from her Vibe tribe.
Though she initially wanted to keep her Christmas-Eve-Eve sleepover tradition with Kiki, we decided that may be too much and instead said told her that she would be able to go and hang out do ALL the Christmas traditions she normally did for Christmas-Eve-Eve, but then would need to come home rather then spend the night. A week before, she told Steph she had changed her mind and didn’t want to do that anymore. We think she was probably nervous and anxious as she did not really know what to expect and I am sure the fact that she spends 99% of her time not at the hospital at home, we think leaving the house like that may make her nervous. So we adapted and instead of her going to Kiki’s, they came to us and she was able to salvage some resemblance of her Christmas tradition and they were able to watch the gym drive by with us.
Now it is Christmas morning and praise be to God Hutton made it through these last 12 days with zero issues. She has been eating like a champ, and acting like her crazy, sassy self. It was an absolute blessing to see her acting like a “normal” 9 year-old. This morning started off with a little hick-up. Right before we let Hutton go down to see the tree and presents, she began crying saying that she was just sad she had to go back into the hospital tomorrow. We had a quick discussion about how blessed she was to be able to spend Christmas at home, while some kids are currently in the hospital. She said she understood and is happy she is home for Christmas, but still sad she has to go back into the hospital tomorrow….which is completely understandable. Now we plan to spend a nice relaxing Christmas Day together, as a family, home.
Tomorrow we will go back into the hospital for Hutton’s 3-Day treatment, which is always the roughest on her little body, and also hopefully get her PET Scan and MRI to get an update on the size of her tumor and get an idea as to when her surgery will take place.
Thank you all for the continued support, love, and prayers. God has definitely been making his presence known during these trying times. As I think of all of you who have continued to pray for Hutton, I am reminded of Matthew 18:19-20: Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.
Thank you from the bottom of our hearts for your prayers and we wish you all a Very Merry Christmas.
TRADITIONS
As a mom, you create traditions when you start a family. At times, especially during the busy holiday season, it seems like sticking to these traditions year after year is more of a chore (especially as your kids get older and don’t necessarily want to participate in said traditions).
I didn’t realize until Hutton started chemo just how different this holiday season would look, and honestly, the last thing on my mind was keeping up with our holiday traditions. This year was just going to be different.
A lot of our holiday traditions are with Kiki and her family. Kiki (Kim but Hutton calls her Kiki), is my best friend of 25+ years. She is mom to Bryson (10), and Grey (6). Bryson and Hutton are 6 months apart in age and have practically been raised together, so all of our traditions have both Bryson and Hutton together (then Grey 4 years later). We were ok with our holiday season looking a little different this year, but in true Hutton fashion she was not going to be ok with that and there are certain traditions she wants to keep. We know that we have to do things around her chemo schedule and how she is feeling, as she gets really overwhelmed, overstimulated, and tired easily due to the chemo.
Well, It just so happened that “Merry Kiss Me” at Dana Point Harbor started on a chemo “off” week and Hutton was in good spirits, so in the middle of November we put on our Christmas shirts and hats and we upheld our Merry Kiss Me tradition, just like every other year. Did it look a little different this year? Yes, yes, it did. But we make it work! That is a box checked off the Christmas traditions list!
We have let Hutton lead the way and tell us which traditions she would like to try and keep this year. The few she would like to still uphold are - her Gingerbread Party and our annual Christmas Eve Eve sleepover at Kikis house. There are also some she would like to skip, like visiting Santa, which luckily we were going to have to do anyway due to her compromised immune system. Which brings us to what we have been struggling with these first few months of her treatments…how do we try and give her a semi-normal life, allow her to see her friends and how much they love and support her, all while keeping her as healthy and safe as possible so she doesn’t end up in the ER or even worse ICU…because an, “Oh its just a little sniffle” for everyone else could mean disaster for her.
With that said, we are going to try our darnedest to make it happen, starting with her Christmas Traditions. We are praying that her chemo schedule will not play a factor this holiday, that she will stay healthy with no unexpected trip to the ER, and that allow her to still be able to experience as normal of a Christmas that she can, keeping her compromised immune system, and not being able to be around anyone who is sick or even has been sick it in the past couple weeks. It will be a challenge but we are determined to make it happen!
Sometimes You Just Have to Get Out of The House!
Hutton’s doctors have said it is alright for her to leave the house, as long as she goes somewhere outdoors, and if she goes indoors she needs to wears a mask. We have been struggling with finding the right balance for her. On one hand, we want to put her in a protective bubble away from anyone and everyone so that there is minimal to no risk of her spiking a temperature or getting sick since she has such a weak and compromised immune system. On the other had, she needs to be able to be able to live as close to a “normal” life that a 9 year-old does and no 9 year old needs to be cooped up in a house only to go out to be cooped up in a hospital. Especially when she actually asks to go somewhere.
See, Hutton’s favorite places to go are Barnes and Noble (ALLLLLLL the books!) and Nordstrom (the chicken fingers and mac & cheese). Yesterday, she asked if she could go to both those places. So we ventured down to Fashion Island to get out of the house. As an added bonus we got to spend time with Grandma Fifi!
Grandma Fifi was my “other mom” growing up and I grew up with her 4 sons, so naturally she is Hutton’s “bonus” Grandma and boy oh boy do we love her! The smiles on Hutton’s face today were beautiful! I’m sure being spoiled by 2 of her Grandmas had nothing to do with that! 🤣🤣🤣
We strolled around Fashion Island, looked at the koi fish, did a little shopping at Anthropologie, A LOT of shopping at Barnes and Noble, and ate lunch at Nordstrom. Hutton even wanted to walk around and not be in her wheelchair when we were in Nordstrom which is a huge step!!
It was just so nice to see her talking, eating, and behaving like a normal 9 year old. To be able to have these moments when she is feeling good in between chemo sessions is such a blessing. We know how fragile her immune system is and in the back of our mind we are constantly thinking if we should be doing this, and worrying that she could touch something and get sick….we don’t want to expose her to anything, but we also know how beneficial these outings are for both her mental health and for her healing, and I definitely saw that today.
We are still working on finding a comfortable balance for this, which mainly does depend on how she is feeling and if she wants to be “social”, and we are hoping and praying that she will be able to venture out a little more and have more physical interactions with her friends and everyone who has been showing her so much love and praying hard for her healing.
A Week “Off”…
Well, yesterday did not go as expected, but once again I am so proud of Hutton dealing with another set back. After the last treatment sessions, we finally think we had everything locked in. We asked for a later appointment time so Hutton wouldn’t have to be woken up so early and we wouldn’t feel rushed the entire morning, we had our packing system dialed in, and I had my truck loaded with almost 45min to spare, which was nice, because Hutton asked for 5 more minutes of sleep (which made me think of what I have to look forward to when she is a teenager :-) ), which we were able to give her. Once she got going, which is always stressful in and of itself, she knew she had to go, but like everyone else in this world, doesn’t want to, after all, who WANTS to spend 5 days in the hospital? But once she was in the car and we were on our way, I could see her mind working and processing everything as I looked at her through the rearview mirror.
Almost 2 hours later we arrived at UCLA. I perfected the parking situation(yes I know very “Dad” of me 🤣) and everything was smooth sailing…we felt confident, and we felt like we finally had this down. But of course, things out of our control decided otherwise.
The nurse who accessed Hutton’s port was “new”, which we didn’t realize until later. Nothing against her, we all have to learn somehow and she was extremely nice and doing her best, but she had an issue accessing the port and had to get another nurse to come in and move it into the right position, which was unexpected for Hutton and caused her a great deal of pain. As heartbreaking as it is to watch and see EVERY.SINGLE.TIME, she dealt with it well.
They took her labs and we met with her doctor, got a lot of clarifications on some stuff, and discussed some of the questions that concerned us, he gave Hutton the prescription to eat as much ice cream and milkshakes as she wanted which she was thrilled (trying to keep her weight up which is extremely difficult). We then went to In-and-Out for a shake and fries (she tried a cheeseburger but it was “disgusting”) while we waited for a room to open up. As soon as we pulled into the drive-thru we received more news that was outside of our control. Hutton’s numbers were not high enough for treatment this week, and she needed another blood transfusion. Hutton heard this and was now upset that we WEREN’T staying. Not because she wanted to but because she went through that ordeal with her port and now was going to have to get it removed. Since she needed a transfusion, we were able to explain how this happens sometimes and the port still needed to be accessed. And bless her heart, she started crying and apologizing for her numbers not being good enough for treatment. We had to explain to her that it happens sometimes, that her friend Bradley (who we were representing by wearing his shirt) had the same thing happen to him, that it wasn’t her fault and she had nothing to be sorry for. Again, she was able to take this news in stride and overcome everything. She successfully completed her transfusion, which was finished just in time for peak LA Traffic back to Orange County. ETA 2 hours. Looking at that drive time, 2 things I have been meditating and praying about helped me handle it without getting upset or agitated.
Everything that has occurred so far with Hutton’s diagnosis, doctors, and treatments, has happened so succinctly that there is no way it is all a coincidence. God has had His hand touching this beautiful girl from the moment she was born. Even if we cannot see the “why”, He has placed us at that exact moment and at that exact time for a reason. All we need to do is have FAITH in that. Because who knows, the “setback” today could have protected her from something even worse tomorrow.
I am also reminded of the single most important practice in Stoic philosophy, which can be simply put: “You don’t control what happens; you control how you respond.”
With all that being said, we got home around 8 p.m. that night and are now looking forward to an unplanned week off from the hospital. Hutton is going to rest as much as possible, eat, and hydrate, and we will be returning next week to continue the fight and stay Hutton Strong.
Thankfulness
We wanted to take a moment this Thanksgiving Day to express our heartfelt gratitude for the unwavering love and support you’ve shown our family during these challenging times. It’s been only 6 weeks since Hutton bravely began her battle against cancer, but it feels like a lifetime ago, or even a completely different life…B.C. - Before Cancer
In these past 6 weeks, Hutton has experienced a myriad of emotions, from sadness and frustration to feelings of helplessness (asking “Why me?”). However, she has never allowed these emotions to consume her. She’s felt them, processed them, and then emerged stronger and more resilient than before. Despite multiple unplanned hospital visits, the stress of the emergency room, and extended stays, she’s shown incredible inner strength and perseverance.
It’s truly mind-boggling how a 9-year-old’s mind can comprehend all this. But one thing is certain: adults and society could learn a great deal from these young warriors.
We’re doing our best to explain everything to Hutton and provide her with the information she needs to understand. While it can be difficult to encourage her to focus on the positive aspects of her situation and express gratitude, we can always count on telling her how many people out there love and support her and pray for her. We want her to know that she’s not alone in this journey, and we couldn’t do this without the incredible love, support, and prayers of every one of you.
Every year, as I am sure most of you do, we go around the table and say what we are thankful for. But this year, what we are thankful for the most, we cannot really say out loud to her. We can’t say, that we’re thankful that she is alive, that we caught her cancer when we did, that we pray every day that next Thanksgiving we will be able to celebrate that she is cancer free and we have another reason to call her our “Miracle Baby”.
But what we can say is that we are so, so, so thankful for every single person who has prayed for Hutton, who has dropped off a gift for Hutton, who has sent a meal, who has donated to the GoFundMe, who has reached out, who has been there, and who has thought about our sweet girl and our family. We can say that we are thankful that Hutton is surrounded by such a large community of strong, loving, and faithful friends/family.
So, on this Thanksgiving Day, we’re incredibly thankful to be able to spend this Thanksgiving at home. We pray that we can continue to enjoy the next 4 days at home before returning for her fourth round of chemotherapy. And we’re forever grateful for the love, prayers, and support you’ve shown us all.
Thank you from the bottom of our hearts. We are so very thankful to each and every one of you.
Another Unexpected Stay…
Well, the very next morning after we posted Hutton’s previous update, she spiked a small temperature. Normally we wouldn’t think anything of it, especially because she was feeling fine, just felt a little warm. After calling her medical team they recommended she come in to get some labs done and a round of antibiotics to be safe. The doctor we spoke to did not expect her to be admitted, so we just grabbed what we needed for the day and left to go back early Friday morning. Well that was definitely a lesson learned the hard way and we will be setting up our “Hospital Supply Go-Bag” accordingly.
Long story short, Hutton ended up being admitted, again and I ended up on a 2 hour drive to go back home to get what we needed and another 2 hour drive back. (Total Time driving including the initial trip up there was about 5 hours)
Though that is obviously not ideal and sucks as much as it sounds, it ended up being for the best. Later that evening Hutton’s temperature spike to 104ºF and we were vert thankful we were in the hospital when it did. What is strange about this time is that all her blood levels were good and she was not presenting any symptoms of being sick, even when her temp was at 104ºF she said she felt fine.
3 days later, we are finally back home…again. It is hard to accept the fact that we don’t know exactly what “caused” the fever as she had no virus or bacteria, but we do know this is the second time something like this has happened with this particular cocktail of chemo drugs. This is also the cocktail that had such a positive effect on her tumor after just one round, so we can speculate, but there is no definitive reason as to why. So all we can do continue to be extra vigilant when in comes to her after-chemo care and continue to be overly and abundantly cautious. These “unexpected” trips to the hospital are extremely hard on Hutton, mainly because as good as some of the staff is at UCLA ER, it is definitely not a place for a immune deficient child and the atmosphere in and of it self is stressful. We are praying that we can figure out a way to pre-empt this from happening in the future. But the important thing is she got the treatment she needed, she is back home, and in good spirits.
Again, we thank you all for your continued prayers, messages, love, and support.
Therapy Dogs are the best