EMOTIONAL ROLLER COASTER

Today had it’s ups and downs, but we are finding our groove with this inpatient thing. This morning at 5am Caleb started his second round of chemo. They started with Vincristine. This is a 5 minute gravity fed drip, so it goes pretty quickly. Then they started the Cisplatin. This is administered through his port over a 6 hour period. Caleb stayed asleep through the first part of that time frame, and woke up about 7:45 ready for breakfast. He ordered scrambled eggs, pancakes, and sausage. Oh, and cantaloupe. He loves “orange fruit” as he calls it.

For a little while after breakfast everything was great. We were playing and he seemed to have a good amount of energy. However, after his dose of Benedryl (works to help with nausea) he started to get very sleepy. This is normal for him after Benedryl, so when he wanted to lay down we didn’t think much of it. But then we realized that he didn’t feel well. He said he felt sick and James and I went scrambling for the barf bags. For the first time in this entire process, radiation or chemo, he threw up today. I wanted to cry for him because he was so sad. It’s so hard for him to understand whats happening to him when he gets sick. But luckily it didn’t continue and he started to feel better after. We called his nurse into the room and she added Ativan into the rotation of meds. This also helps with the nausea and he usually doesn’t need it. But today we decided to keep him on it since he had gotten sick.

He recovered quite well after resting for a little while. He got up and played and all seemed ok again. He was hungry for dinner and ate pretty well. We played play-doh, he got into his jammies, brushed his teeth and took his meds. All seemed well. He said he was tired and wanted to go to bed, but soon after laying down the same thing happened. He started not feeling well and threw up again. He said he felt better and immediately fell asleep. I think he was worn out from everything today!

The positive part of this stay is that I feel like I’m more comfortable being inpatient now. I know what to ask for, how and what to order for food, where all the patient nutrition and family rooms are. (side note: St Jude is pretty cool in that they have a room set up with all sorts of snacks and drinks for patients. It’s stocked with everything from juice to pudding to crackers to popsicles to cookies, and more… there are a lot of choices. It’s great because Caleb loves to snack! There is also a “family room” where we can store our food that we want to keep refrigerated. The room also has a Keurig machine, utensils, plates, bowls, etc. These rooms come in handy a lot!!!) We have also become an expert on getting comfortable sleeping on a hospital chair/pull out couch. And we have become experts on what to pack… for me, I need my own blanket and pillow. I bring some snacks and drinks that I like from home and I’m pretty much all set. For Caleb, we need lots of toys!!!! Anything to pass the time because we are in this room ALL DAY! He switches activities like every 20 minutes so we go through a lot of things in a day. James is pretty happy as long as he has his iPad and his own pillow.

But of course there were mixed emotions today. I am thankful that I feel more mentally prepared for this stay. I am much less anxious this time now that I know how this process goes. But watching Caleb get sick was so hard. It was mostly hard because we have made it through so many treatments without him getting sick. I don’t like watching him feel yucky, and I don’t want him to lose any more weight. I hate that he’s stuck in this room when he should be outside being a kid on a Saturday. I hate that we are not together as a family this weekend, and I feel pulled between being with Caleb and being with Tyler at home. There is no right or wrong answer for any of this, just what we feel is right at any given moment. The one feeling that never waivers is feeling like St. Jude is the right place for us to be. The nurses here are incredible. We emailed Caleb’s main doctor with a question today and he wrote back within a couple hours. It’s Saturday!! He doesn’t have to do that!! We wouldn’t ever expect a response that quickly. But that is how much people here care. So, as I sit here tonight my heart hurts, but it’s also full. It also helps to have James with me because for the last stay we split up more. It’s a lot less lonely with 2 people here even though I know in a heartbeat he’d let me go sleep in our own bed at the apartment. But we are a team and we are sticking this one out together. We are feeling our way through this overwhelming process.

Tomorrow at 5am, Caleb will get Mesna and then the chemo Cyclophosphamide. Mesna is given first to coat his bladder and protect it from damage. Then the Cyclophosphamide bag is hung and will drip for about an hour. I am not sure if he will feel better or worse tomorrow. I just know we will be here for him every step of the way! I am not sure exactly what day we’ll get to go home yet, just taking one day at a time. So, more tomorrow!