5

Trip turned 5 on Thursday. He had a list of things he required for the day before we could call him a 5 year old. He had a wonderful celebration at school. His teachers are amazingly patient and always take an opportunity to make any situation a learning experience. I’m glad he was “fussed” over at school. We had a calm family celebration on Thursday evening with a trip to Dave and Busters and cake. It wasn’t the celebration Trip originally had in mind, but between chemo, soccer and not knowing how well he would feel, that’s the best we could do. We want the next big celebration to be when he gets off chemo. When he woke up on Friday, he asked, “Mom, am I still 5?” When I said yes he told me that he needed to be sure.

I can’t believe he is 5. The last two years have been a blur. I feel like most of my memories involve the hospital in some way and sometimes that gets to me, but boy am I thankful I could be there with him during treatment. That’s proof of the wonderfully understanding and patient people I work for and with. I couldn’t ask for a better group of people supporting my family and me the last two years. I will never be able to repay their kindness.

Trip played in his first soccer game on Saturday. I think his team got beat 10-0, but it was fun to watch. He had to be told a few times to quit picking grass and to pay attention to where the ball was. He shook his head when the other team scored, but on the way home he said, “I didn’t even get upset that we lost!” I’m thankful he can play and thankful he can find joy even in losing. His godparents were there to support him and his godbrother spent the night with him. After chemo, soccer and a sleepover, he slept most of Sunday afternoon.

I called radiology last week to reschedule his scans. I was told the earliest they would schedule them is March 14 since he has to wait a month after having pneumonia. I’m not sure I ever got the official verdict of pneumonia, but I guess the ER doctor hinted at that. Dr. Appel will have to get special permission from the anesthesiologist to move up the scans, and I’m not sure that will happen. As of now, scans are still pending, so I’m sure he’ll have another round of chemo in a couple of weeks.

He has an appointment with his endocrinologist on Monday. His DI medication has not worked normally in the last few weeks. His normal dosage dropped in half and has started to come up again. That messes with life a little because I never know when he is going to breakthrough. The nighttime dose typically wears off around 5:00 a.m. each day, but one day it didn’t until 10:00 a.m. so school was out of the question. When that happens it’s a watch-and-see approach and puts us on alert. The doctor and I have been on the phone often to figure it out, so I’m glad we have an appointment next week. She is also planning to test his cortisol levels in hopes of taking him off hydrocortisone. We are all ready for that.

In the meantime, we will enjoy age 5. I’m so thankful he is 5.

Delay of Game

Trip came home from school yesterday with a pretty high fever, so we were in the ER late yesterday afternoon for the standard protocol. His counts were good enough to be sent home after rocephin and a lung x-ray, but his ANC is understandably low after a chemo weekend. There seems to be something happening in his lungs similar to what was there in Nov/Dec, but they stopped short of calling it pneumonia this time even though we went home with the same prescription.

I left a message at the clinic to ask if we should even go in for his scans today. They called back to tell us not to go as soon as we pulled into the parking garage at Children’s downtown. They did not want Trip sedated while he is sick and something funny happening in his lungs. I feel good about postponing and want to focus on getting and keeping Trip healthy until cold and flu season passes. We will reschedule the scans once he is well.

He seems to feel better today, but he’s not 100%. Instead of having a follow-up appointment on Tuesday for scan results, it will likely be another checkup prior to starting chemo again the following weekend. And that’s okay too.

Scanxiety

Trip finished another round of chemo on Saturday morning. We are all hoping and praying this will be his last. He has scans on Thursday of this week. Believe it or not, he has x-rays, MRI and a PET scan all in one day. We have fought for this to happen for over two years now so that we limit anesthesia days and it’s finally happening. The downside is that they could only make it happen if the scans are in the afternoon, which means a very long day for Trip. He can’t eat after midnight, so I imagine he’ll be a little grumpy. I always have to remind myself that he completed a 12-hour water deprivation test when he was much younger and first diagnosed with DI, so in comparison Thursday should be a piece of cake. (Pun intended since I promised him he can eat a cupcake after his long day – maybe it’s a bribe but I don’t care.)

Trip finished chemo Saturday morning at 1:00 a.m. I couldn’t sleep after, so I got online to waste time and ended up in the histiocytosis support group reading posts and making myself crazy. Post after post was about how LCH returned within months of getting off chemo. Some parents even had their child’s port removed (which is what Trip wants more than anything) only to have another surgery to put it back a few months later to start chemo all over again. That wasn’t exactly a helpful sleep aid. Basically, I’m scared the scans won’t be clear, but I’m also scared they will be good and Trip will get off chemo only to have LCH return. I can’t be happy, huh?

I blame my poor online reading choices on the upcoming scans. I know all the statistics and I know exactly what to be scared of at this point, but I still sat there and read for a couple of hours. It’s hard to put into words what scans actually do to me. There is a certain amount of hope accompanied by unreasonable amounts of fear along with a myriad of what-ifs.

I know this lesson. Why can’t I live it? I know living in the past and remembering how hard it has been watching Trip battle this disease is no way to live. I know that fearing the future will only rob me of today’s joy and power. I know that living in this moment only is where I should focus at all times. I think I do a good job of that most of the time… until scan season (it’s a week but feels like a season to me).

We have had some great moments to live in recently. Trip started soccer and is having a ball even though he doesn’t understand or follow any of the rules. The team manager told the boys to kick the ball and in typical Trip fashion he yelled, “We’re trying LADY!!” He’s not the best player on the team, but he’s definitely the most enthusiastic. Trip also had his wish granted by the Make A Wish foundation. His wish is to go to Disney World. They brought him a Mickey balloon and told him he will get to go… months from now. Trip is into instant gratification, so the sentence didn’t mean much. His wish-granters must have anticipated that because they had a huge fire truck come to our house as part of his special day. Trip’s friend Carter was able to be with him (Carter had his Disney wish granted last year) and our neighbor Michael joined the fun. (Michael was probably the only neighbor who enjoyed the commotion!) The boys had a blast. They explored every inch of the fire truck, ambulance and chief’s car. They loved to ring the (very loud) bell on the front of the fire truck. He had so much fun that the firemen coming to his house could have been his wish, but there is more to come!

I hope I don’t have anything to update until next week after his follow-up appointment. No news is still good news, so I want to get through the scans and have a weekend of fun. Trip’s first soccer game is this weekend and the Fogleman family will be here to visit. We have so many blessings to be thankful for and so many memories to make.