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.