Radiation Treatments Complete
Hutton finished her last session of radiation on Tuesday…yayyyyyy!
Radiation was a lot. Not just because it was an additional treatment Hutton had to go through when she “should” be done and moving forward, but also because Steph and Hutton were in a hotel near UCLA for 7 weeks (one of those weeks she was inpatient for chemo as well).
Saying it was a lot is an understatement. While I was able to take the first week off and help get them familiar with the process, the rest of the time, I had to stay home and work, or was traveling for work. After that first week, we would be home on Friday, then Steph would spend what was left of Friday and all of Saturday doing laundry and re-packing. We would then load up, and she would drive herself and Hutton up to Westwood Sunday afternoon and check into their hotel for the week. Hutton and Steph would then spend the week up in Westwood, and return Friday afternoon, only to rinse and repeat. Steph was able to develop a good routine, but still, it was not an easy task.
Hutton, thankfully, did relatively well with radiation. She did, however, have some issues with her surgical site, as that is where the radiation was targeted. She had some skin irritation that we had to watch closely, with cleaning, medicating, etc. The scars from her surgery are extensive, and the radiation aggravated the area, but that was the only “major” side effect from the radiation. She also needed lots of blood and platelets during radiation because her numbers were so low from the combination of chemo and radiation. It was nice that they were staying in L.A. because that meant they could just go to the infusion center for a few hours and get blood and/or platelets and not have it be an entire day, which typically includes 5 hours in the car because of traffic, which they may now need to do again since they will be home. This is definitely something they will miss being able to do.
As a celebration for completing her radiation treatment, Hutton asked to stay in a “fancy” hotel, so she could order room service, so for her final 2 days of treatments, that’s exactly what we did.
Steph did an amazing job and really tried to make the entire experience of staying in L.A. as fun for Hutton as she could. She took her to museums, explored Westwood, and went to the farmers’ market every week. They really got to spend some great mom/daughter quality time together. She tried to make it fun for Hutton and act like the experience was more of an adventure, with medical procedures, rather than medical procedures with some activities. And having to watch from a distance, due to work or traveling for work, I have to say, Steph absolutely succeeded at that.
But I cannot move forward without first mentioning how we will forever be grateful to Hutton’s radiation oncology team for making this experience AMAZING. The very first day, Hutton had a really hard time with what they needed to do to prep her for the radiation treatments, and instead of it just being a job, and/or having a “having to deal with a kid” attitude, they took their time, comforted her and supported her with words of encouragement, and they showed this kindness consistently and daily throughout her treatments. They listened to her, they related to her, they made her feel special, and they will forever hold a special place in our hearts for everything that they did for our girl. When the radiation oncology team found out Hutton wanted to be a Demon Slayer character for Halloween, they all decided that they were going to dress up as Demon Slayer characters as well. Halloween was so special for her! They all dressed up, they all took their picture with her, they got her special Demon Slayer treats, they made her day, and made her smile! Even though I made a MAJOR Dad fail and forgot to pack a part of Hutton’s costume, which of course caused an understandable breakdown for Hutton and started her Halloween off on a negative note, looking back at myself as a child, I would have reacted the same way. But they were able to turn it completely around for her, saving that day and making an unforgettable core memory for Hutton. [If any of her radiation oncology team is reading this….Thank You!]
Hutton was the youngest patient by far, so she attracted attention in the radiation oncology waiting room, and even during this difficult time, Hutton’s inner light continued to shine, drawing people who were dealing with their own medical challenges to say high to her and encourage her. She made some great friends and had some entertaining conversations in that waiting room.
Deciding to move Hutton’s treatments to UCLA was one of the most difficult decisions we had to make, and looking back on everything she has endured, we know we made the right decision, and if it were not for her Team at UCLA, from her primary doctor, the nurses and care team, and child life on her floor, her surgeon and the horror we endured post surgery (which had nothing to do with him or the staff at Ronald Regan UCLA), the PICU nurses and doctors who got us and her through something no parent should have to experience, I know in my heart we would not be where we are today and even though it is not ideal, it is better then where we “could” have been. So to her entire team that has done so much for her and continues to do so much, Thank You!
Now, we go back to Hutton’s chemo protocol, which is the “new” chemo and is every 3 weeks inpatient, for 5 days. Hutton, understandably, is completely over it. We all are. But if this is what we have to do to save her life, then this is exactly what we are going to do.
Being in the hospital getting chemo is not fun, but we try to make the best of it for her. She feels icky, she doesn’t like it, and it’s hard because some days she really wants to eat but has a hard time deciding because she doesn’t know what will actually taste good. So, we order her what she finally chooses, only for her to taste it and have it taste horrible. Chemo taste buds SUCK! She gets so frustrated because she is so hungry, but nothing tastes good. We order hospital food, we Door Dash, we get food from the hospital cafeteria (sometimes all within a 3-hour period), and we pray that something tastes good. Steph (or I if I’m able to be there ) will go downstairs and grab the DoorDash order and pray the entire way back to her room that what is in the bag will taste good for her. We can’t even imagine how it is for her to want to eat something that she normally loves only for her to try to eat it and have it taste horrible 😩 She always says “I’m so sorry but it just doesn’t taste good” and we tell her “NO! DO NOT BE SORRY! We understand” she will then apologize because she knows it costs money and she doesn’t want to waste it (which was something I was teaching her BEFORE all this happened), but she just can’t eat it. We tell her that she never needs to apologize for that, and it’s all a part of getting chemo, but as a parent, it is SO HARD.
She has only had this “new” chemo twice now, so we are still trying to figure out the right pre-meds and post-meds. We are hoping that going into this 3rd session next week that we have it figured out and she doesn’t have a reaction to the chemo. So please pray for that and for a smooth chemo/hospital experience with no side effects.
Chemo Weeks Are Always Hard
Chemo weeks are always challenging and this one was no different. Though, I would say it was a more challenging, as Hutton was not only getting her chemo treatment’s this week, but also getting radiation as well. This meant that she had to be woken up early in the morning to be transported down to where she receives her radiation treatments, which she did not like at all.
Nevertheless, 5 days in the hospital is never fun, but we try to make the best of it for her. The nurses, child life, and her doctors are all really amazing, and are like family to us at this point (and that isn’t something we are just “saying” they really are). They all try really hard and go out of their way to try and cheer Hutton up when they can tell she is feeling low or having a hard time.
When Hutton is admitted, she doesn’t like to do much because her port is accessed. Not only is this uncomfortable for her, but she doesn’t much like being attached to some type of machine for either medicine or fluids 24/7, and as I wrote earlier, this was Hutton’s first admission with chemo AND radiation so we didn’t know what to expect. She was not happy about having to wake up early and go down to radiation oncology every morning, but she did it and was a champ!
This was only Hutton’s second time getting her “new” chemo so we were (and still are) trying to figure out the best combo for her pre and post chemo meds. She had a reaction to chemo where she gets itchy and has red cheeks and a little bit of swelling so we’re still trying to figure out the best remedy for the reactions/exactly what med is causing it.
This admission started rough for her and had a lot of “I don’t want to be here”, “I want to go home”, “I hate it here”, and “Why is God doing this to me?” which is always hard to hear. It was also hard because we knew that instead of going home when chemo was done we had to go to the hotel because she has radiation again Monday morning. This means we will be away from home for 2 weeks this time, which is always difficult, especially coming off chemo.
But we are thankful that Jeremy, though he was away for an entire week last week, and had to work out of town (but local) this week, was able to come up and spend the last day/night in the hospital with as, as well as the first night/day at the hotel. We know this isn’t easy on him either, having to be away from us, not being able to help and be involved as much he wants to and used to be. And we know he also doesn’t really get much of a break either since he is either working, or when he isn’t working he is stepping up and taking over for me so I can get some time to rest and recover. This battle is definitely not easy on any of us, but Jeremy and I know we have continue to show strength for Hutton to see, no matter what, so she can continue to stay positive and strong as she continues her battle. And we have said it before and will say it a million times over, we would not be able to do this without the help of my mom, Huttons Mimi, at home to take care of the animals, take care of the house, pick up things for Hutton from her school, and just basically run the household while we are gone.
WEEK 2 of 7
Well, we are almost done with Hutton’s second week of radiation treatments, and this is also week 2 of 7 that we will be living in a hotel by UCLA.
We were fortunate that Jeremy was able to be off work for the first week, to be with us, help us get used to this new routine, and figure out the “lay of the land”. But now he has returned to work and it is just me and Hutton getting quality mother/daughter time.
Overall, Hutton is doing great with the radiation treatments themselves. She is able to sit very still through the treatment and stay calm while on the table. Unfortunately, she is definitely experiencing the side effects of the treatments. She is very tired, she has headaches, and her blood and platelet counts are VERY VERY low. But…one of the benefits of us staying in the hotel near UCLA, is that Hutton can get labs multiple times a week along with the needed transfusions, as to help keep her counts up, and hopefully not delay her scheduled chemo treatments. This week, her numbers were the lowest they have ever been (probably due to all of last week’s radiation treatments) and on Monday she got a blood and a platelets transfusion before her radiation treatment. She got more blood and platelets today (Wednesday) before radiation. So, we are hoping that will help with the headaches and keep her counts high enough to stay on her treatment schedule.
All things considered, Hutton is doing wonderful and remains in good spirits. She is adjusting to living in a hotel and to daily hospital visits. She has had some rough moments, but has remained, overall, positive; and that light that shines from within her, though it may dim at times, it has never gone out, and always comes back shining brighter then ever. No idea how she can do that. She has set a daily example of strength and perseverance since she started this battle and continues to make us proud every day.
Here We Go…Again
The same…but different.
We go back to UCLA Monday for chemo.
Hutton was supposed to be done…but with the cancer still growing, we unfortunately need to continue her chemo treatments…and more. We meet with her radiation doctor this Monday as well, where we will find out if she will be doing 2 weeks or 3 weeks of radiation treatments, but we think it will only have to be two weeks at a time.
This means, we will be at UCLA for 5 days (inpatient), where she will get both chemo and radiation every day. Then, we will come home for one day, then back for 5 days of radiation, which will be outpatient. For the outpatient radiation Hutton and Steph will need to stay in a hotel close to UCLA. The radiation treatments usually will be in the morning, but with the way traffic is to and from UCLA, we think it would be better for her to stay closer to her hospital until we have a better understanding of how her body will react to this new protocol. She will then get about a week off before, repeating the treatment cycle all over again. We are praying it will only be 2 weeks of radiation, otherwise we would be spending 3 weeks out of the month either in the hospital or in a hotel.
This new chemo protocol has different (potential) side effects than the other chemo meds she has been on, and honestly they aren’t great. I mean none of the side effects are good but this new protocols side effects could more…permanent.
Hutton has been in such good spirits these past few weeks, and been able to do more and more, we are praying that she will be able to to continue this progress and since her body is used to going through chemo, it will be able to tolerate this new chemo as well, with no unexpected trips to the ER and unexpected admittances.
Thank you for all the love you support you continue to show towards her and our family and continue to pray for Hutton as she begins this new treatment protocol.
One Year Ago, Today…
1 year ago, our world was turned upside down. On September 6, 2024, Hutton’s doctor called me and told me that what we thought was a sprained hamstring was actually a tumor in her pelvis. I was 400 miles from home with Hutton at her Godmother’s house. Hutton and I had traveled to San Ramon to see her favorite musician, Lindsey Sterling, in concert. I had to text Jeremy and my mom the news because Hutton was next to me, and I didn’t want to alarm her. I remember praying so hard that the tumor was just a growth and not cancerous, but that obviously wasn’t the case.
1 year - 365 days - 8,760 hours.
It’s crazy to think that a year ago, we were looking into the unknown, and today…We are in the same position…looking into the unknown.
We don’t know why her cancer is growing and not shrinking. We don’t know if she is going to do more chemo or if we are going to go another route, WE JUST DON’T KNOW!
Over the last year, we have spent almost 100 days in the hospital. Hutton has had 56 chemo days. She has had a surgery that removed a third of her pelvis, including one of her hip sockets. She has “coded”, been in a coma in the PICU (Pediatric Intensive Care Unit). She has been bedridden, and she has had to learn to walk again (we’re still working on that one). She has had to miss school, had to forgo birthday parties and social events. She has had to sacrifice SO MUCH, yet even through all this, she has, for the majority of the time, kept a smile on her face. That inner “light” she has has not dimmed, and still shines brightly, which should be an inspiration to us all.
Our family has also had to sacrifice SO much, and we would do it over and over and over again for Hutton’s life. Whatever it takes to kill this cancer and save Hutton’s life, we are here for and we are ALL IN!
The current treatment plan doesn’t seem to be working anymore, so again looking into the unknown waiting for what is next, and no matter what that may be…we are here ready to stand strong and fight with our all for her. There are some amazing treatments that we are looking into to add to what ever conventional treatment plan her doctor has planned…but they are unfortunately not covered by insurance, but we will find a way. We are committed to doing whatever it takes to eradicate this cancer from Hutton’s body and see her become the woman God has planned her to be.
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.
