It’s Been A While…
It’s been a little bit since we posted an update. We had an unexpected admission Thanksgiving week because Hutton had a fever when she was at the infusion center getting platelets. We haven’t had an unexpected admission in almost a year, so this was a huge shock for us. Thankfully, I was able to leave work, go home and pack the things Steph and Hutton would need, and drive up to UCLA. We are chemo warriors, we are used to this, we know this, we are not amateurs…BUT we were back to where we were a year ago with an unexpected admission. We are thankful for all of your prayers, because we were able to be discharged super early in the morning on Thanksgiving, and we were able to be home on Thanksgiving, which was a huge blessing.
This new chemo regimen is really throwing us for a loop, though, and it is SO SO SO hard. It’s almost like we are back to where we started a year ago. Back to the beginning. This new chemo comes with new side effects that we need to get used to, so it’s definitely a learning curve. This new chemo makes Hutton super nauseous, which we haven’t experienced before, so that is something new we are having to deal with. The nausea makes her not want to eat or take her pills, which adds another layer to her healing journey. Plus, the nausea medicine makes her nauseous! So she is dealing with the normal chemo ick, plus mouth sores, plus fatigue, plus this (new) nausea. It is a LOT, especially knowing that she was “supposed” to already be done.
Hutton had expressed the desire to go to Disney to go on Haunted Mansion and see the Christmas Decorations, so we met with her oncology team and figured the best time for her to go was right after she completed a chemo cycle, so that her numbers would be up. With all these new frustrations, we agreed that Hutton more than deserved to have a fun and somewhat “normal” day. She would be able to get out of her bed, out of her room, and out into the world for some fun. So we planned it.
We got hotel reservations, park tickets, and matching pajamas, because according to Steph, that is a must 😂, and to be honest, Hutton loves that kind of stuff as well. Steph planned the whole thing, and Hutton was feeling great and really looking forward to it. It was going to be a grand time…until we pulled into the hotel and she got nauseous. Like super nauseous. We got her into the hotel room, and she just wanted to crawl into bed and rest. An unseen issue with her being in a wheelchair is that going anywhere with nausea is unpleasant because when she goes somewhere basically feels like she is driving somewhere. Imagine being car sick and not being able to get out of the moving car. She did not want to leave the hotel room and was only able to eat ice chips. That’s how bad the nausea was. So we spent 2 days in the hotel at Disney. On a positive note, she was able to sit on the balcony of our room and watch the fireworks show, which, later, she said was the best part.
We considered just leaving and going home, and Disney was very understanding and was going to allow us to cancel the hotel reservation without any fees. But we thought getting her into the car for the drive home might not be helpful, plus Hutton has always liked hotels, and I thought any change of environment would help her mentally. So we decided to just stay for the duration of our reservations and take it day by day. Hutton felt really bad about not being able to leave the hotel room, because she knew it cost money. This girl…such a good heart, with everything she is going through, and as bad as she was feeling, she was feeling bad “wasting money”. Pretty sure this is because this was a lesson we were teaching her before she began her battle with cancer. We comforted her and told her it wasn’t a waste of money, and we were just having a nice hotel “stay-cation” to spend time together as a family. If she felt better and wanted to go into the park, we could; if she didn’t, we wouldn’t. This time was hers and for her, and it didn’t matter what we did as long as we were spending time together. Finally, on the 3rd day, she felt well enough to go into the parks with her friends….then it started raining, so we had to leave earlier than expected. It was not what we had planned for, but we made the most of it. (The story of our lives, the past 2 years) We all had a BLAST and made the most of our time at Disney!
We have become pros at living life on the fly, and we have gotten used to not being able to plan anything…Well, I mean Steph has 😂 If you know Steph, you know that she is a total Type-A planner. She likes a plan, and in the past year, she has realized that she can’t do that anymore. This is even more so around Christmas time. We have spent 10 years building Christmas-time traditions for Hutton. She has a gingerbread house decorating party as well as other holiday events she hosts and attends, but with Hutton’s chemo schedule and how she is feeling after chemo, she can’t really plan anything, again, for the second year in a row.
The only thing she can plan is the lab visits at Quest by our house, and then, depending on those results, see if they need to go up to UCLA to get blood, platelets, or both. Or, if her numbers are good, go for chemo.
The upcoming plan is that she has a scan (PET-CT) on Tuesday, then straight to an admission for 5-day chemo. Again, that is the plan, but depending on her numbers from the labs on Tuesday, we won’t know. There is a saying, “You plan… God laughs”…ain’t that the truth. We know His plan is greater than ours, and even though our plans may fall apart, they are by His design, and it may not make sense now, but it will.
