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.

Trust

Colson and I were fortunate enough to be able to go on a cruise last week. Colson had some rough times last year with his business, but he worked hard and the cruise was a reward from his awesome vendor, ABC. Luckily, we have a rather large group of friends in the roofing industry who also made the trip. It was an 8-day cruise. I didn’t have it in me to leave for the full 8 days, so I met them at a halfway point. I had quite a bit of anxiety about leaving Trip given the amount of times we’ve been to the ER, but Gaky and Pops took such good care of him.

Trip was a trooper and didn’t end up in the ER until we got back on Saturday night… not kidding. If he had to go, I’m very thankful I could be with him and not stuck in the middle of the ocean. Gaky called to let us know Trip had fever when we were waiting for our flight home in Ft. Lauderdale. Colson said I bounced my leg the entire flight home. (I never said I don’t have any nervous ticks.) The verdict is the flu. Even with the flu shot, he still got it. If he has to have the flu, I’ll take this form every time. They gave him the regular “just in case” doses of rocephin and steroids and also started him on Tamiflu. He only had fever on Saturday and a cough is the only thing bothering him now. This isn’t the flu I’m familiar with but I’ll take it.

Trip had a regular clinic visit on Monday prior to starting chemo again this weekend. I felt better that Dr. Appel saw him after his flu diagnosis. She agreed that he looks great for someone with the flu. We will start chemo as scheduled on Friday as long as he doesn’t get fever before then.

During the visit, Dr. Appel shook things up a bit. She said this is supposed to be Trip’s LAST chemo treatment. This is week 52 of methotrexate and should be his LAST. (Everyone reading that like I’m typing it??? LAST L.A.S.T. LASTy McLASTerson chemo!!??!) I don’t want to get my hopes up but the fact that we are even at this point is so surreal. Before a final decision is made, he will have another round of scans to be sure there isn’t any active disease. There was talk at one point of keeping him on maintenance chemo since they are learning a longer maintenance phase lessens the chance of recurrence. I will ask to discuss that again before any final decision is made.

Trip has asked about getting his port taken out for so long. I hope it happens for him sooner rather than later. No port means no more ER visits when he gets a fever. No port means Trip will feel more “normal” than he does now when comparing himself to other kids. He still thinks getting a port out is a rite of passage and maybe that will coincide nicely with his 5th birthday.

I’ve thought a lot about trust lately. Even if I don’t always realize it, trust is something I easily have to give away on a daily basis. We all do. We have to trust the driver in the lane next to us will stay in his lane. We have to trust the pharmacist to put the right pills in our prescription bottles. We have to trust our families/friends to care for and protect us and those we love. We have to trust the airlines are going to land where they are supposed to land. We have to trust the captain of the ship won’t hit any icebergs. (OK, it was a Caribbean cruise… I digress.) Without trust, life would be boring. Relationships would be hindered. Business deals wouldn’t happen. Adventure would be rare. Trust is hard for me when it comes to Trip. I remind myself how much trusting I have done this far and how much more I have to do as a parent. I choose to trust that Trip will thrive in this life, that he will learn how to manage his disease and he will still have unlimited amounts of joy. I hope I do my best to teach him to trust others and teach him to be trustworthy himself. I hope I live that daily so he will see how important but how freeing trusting can be.

Choosing Love

We have still been battling germs at our house. Trip had/(has?) pneumonia, Colson had bronchitis, and I had strep. I think we are finally all on the mend. Hopefully we can stay well for Christmas. Trip has had a great week and was able to go to school full days last week. This week he has the regular Tuesday appointment with his oncologist to get counts before chemo starts Friday. Hopefully it will be an uneventful week as far as any illnesses go and we can get another round of chemo under his belt. There was talk of doing another chest x-ray to see if he still has pneumonia.

Trip and I went to see Rise of the Guardians yesterday. What a good movie at a good time. The Guardians are Santa Claus, Easter Bunny, Tooth Fairy, Sandman and Jack Frost. They protect children against Pitch, who is the boogieman representing fear. It is a great good vs. evil movie. I’m not sure Trip really comprehended the full lesson at his age. He was primarily happy the good guys win in the end (sorry for the spoiler ;) ). There is good in this world and there is evil in this world. There will be times we feel safe and times we feel fear. We all have a decision to make about what we believe in most and what motivates us. My hope is that we are motivated by love instead of our fears and insecurities. It is my job as Trip’s mom to comfort and protect him when he is scared and to encourage him to count his blessings. I can’t protect him from LCH. I can help him to see the good around him and the loving people surrounding us. In helping him, I'm helping myself. What we focus on gets bigger. I hope my focus is always on love.

My heart goes out to the families in Connecticut. I can’t imagine the pain and bewilderment they are facing. True evil showed its face in Newtown. I hope somehow, someway, someday they will feel safe, see the good and notice the love surrounding them.

Fever. Rocephin. Repeat.

Trip has pneumonia. We went to the ER on Wednesday night because of a high fever. Trip got a lung x-ray they said was clear. We went again last night with a fever thinking he’d get rocephin and we’d go home with no major news, but suddenly the lung x-ray from the night before showed pneumonia. (I never got an acceptable answer on why there were different results from one night to the next and if I would have learned about the pneumonia if he hadn’t had fever the second night.) We luckily got to come home. His counts have dropped since we were in clinic on Tuesday, so the worry is that we will end up in the hospital if things don’t improve. His ANC was down to 1000 last night, which isn’t terrible, but it has dropped from 3200 since Tuesday. If it drops below 500 and he has a fever, we get admitted. So far today, his fever has stayed below the threshold of having to take him in, so I hope we stay on that path.

Disease can be tiring, lonely and overwhelming for the patient and the caregiver. I woke up with thoughts of feeling incapable of doing what needs to be done to take care of my son, work, and manage life. A phone call with my mom reminded me she would drop her life to be here for Trip and me. An early morning text asking how we are doing reminded me people care. A friend who offered to bring us dinner and one who offered to go to the store for us reminded me I’m not in this alone. The wonderful friend who actually needed help himself but offered to take care of Trip just so I could have a moment to catch up with myself reminded me how good people are and that they want to help. Near and far I know people are rooting for us and would do what they can to make things easier. Those gestures can never be repaid. Saying thanks doesn’t seem to be enough. Just know that you each have my humble gratitude.

Don't Get Too Comfortable

What’s that saying? If you want to make God laugh make plans… it’s something like that. That describes our lives last week. Two weeks ago, Trip suddenly got a fever. It was Friday afternoon. Colson was hunting. Trip already his first dose of chemo that morning and was home from school to get his 2nd dose. He wasn’t acting like himself. I took his temperature and it was almost 102. I called the clinic and in we went for the intravenous antibiotics he has to have every 24 hours when he has fever. (To be on the safe side, the assumption has to be the fever is from an infection in his port instead of the likely virus.) I wasn’t prepared for how hard this was on him. He gets accessed every month to flush his port but that only takes a minute. This antibiotic came with the big bandage, the long line and a tube of medicine. The screaming and crying was intense along with a few of the kicks he divvied out. Trip was mad to say the least. His counts were good enough that we could leave after getting the antibiotic, but explaining it was only a 30-minute medicine wasn’t getting through. He couldn’t calm down while the medicine was going in. He cried and refused to rest. I said, “Trip, you know we are not staying here, right?” Through tears he said, “I know we aren’t staying here but it feels like we are staying here.” It made perfect sense to me. All the actions up to that moment were the exact steps we would take before getting admitted for the few days of chemo. We eventually got to go home, but he still had a fever so we forfeited the two remaining chemo doses for the weekend. After that, he felt better… until Tuesday.

Tuesday night we ended up in the ER. We learned Trip tested positive for RSV, which is common and shouldn’t be too scary. High fever, low oxygen levels, high heart rate, a little vomit and more antibiotics all came with round two of fighting from Trip. His fever was so high and he felt so crummy I have no idea how he had enough energy to fight but he did. We eventually got home around midnight and at 2:00 a.m. his fever was high enough to scare me. For some reason Trip doesn’t respond to Tylenol as well as Motrin, but Motrin isn’t good for chemo patients because it can lower already compromised platelets. I gave him Motrin anyway and did not sleep the rest of the night. I left for San Antonio for work at 6:00 a.m. on Wednesday. Colson had to take Trip to the hospital again on Wednesday and I decided to come back home that night.
I thought I would be used to “scares” and this would be a no-big-dealer for us, but the high heart rate, low oxygen and seeing my kid miserable struck the fear in me all over again. Visions of 2011 ICU were dancing in my head. Finally Thursday his fever and heart rate were down. We got to come home after another round of meds and stay home. What relief.

Sunday he was feeling even better so we went to church. The joy I felt watching him sing and clap and enjoy being there was overwhelming elation. I felt a pure and humble gratitude being with him in that moment after the two years of fighting and the week of struggles. What a brave boy. What a fighter. The times I’m getting kicked and yelled at while he is getting accessed used to upset me. Now I try to give thanks in those moments for the fight he has inside. He’s surviving this disease. We are surviving. We are thankful, so thankful.

We went to see Wreck It Ralph this weekend. There was a St. Jude commercial before the movie. (I can’t say enough wonderful things about St. Jude. What an unbelievably generous organization.) The message was to give thanks for your healthy kids. I give thanks for my mostly healthy kid. I’m thankful for him no matter what his state of being is. He has taught me more about love and life than I ever thought possible. Our list of thanksgivings this season far exceeds anything I could have ever imagined. I’m so thankful to each of your for your support and for following our journey. I hope each of you have a wonderful Thanksgiving week.

Good News!

Today we returned from visiting my family in Arkansas. It has almost been two years since our last trip there. It has been two years since our last family trip anywhere. It was so nice to be there and so nice to hug people who have supported us since Trip was diagnosed. These are people who are the salt of the earth and who I know would do anything for us at any hour of any day to help if we needed them. They have helped with prayers, listening ears, hardworking hands, and unending supporting. These things can never be repaid. “Thank you” doesn’t seem to be enough, but these people don’t want a thank you… they want to know how they can help now. They do it because they love us and genuinely want the best for Trip. Not visiting in almost two years meant trying to cram a lot of things into one weekend. It was impossible to see everyone we wanted to see and do everything we wanted to do, but hopefully now since I’m more comfortable traveling with Trip we will go back in the very near future.

Trip has had his oral surgery, neuro-psych test, more chemo and an MRI in the last month. The oral surgery was fairly simple other than a small vomiting spell due to the anesthesia. Trip has some silver teeth in the back and cried about them for the first few days, but now he seems to accept them.

The neuro-psych testing was interesting. The doctor explained with LCH, the MRI might show areas in the brain that could lead to changes in abilities/behavior OR there can be nothing on the MRI but there could still be changes in abilities/behavior. (Huh?) Basically there is no great science to this. Trip tested superior in all areas except his fine motor skills, which has been apparent to us. She doesn’t think it is bad enough to refer him to an occupational therapist unless he doesn’t progress like he should in the next few months with schoolwork. At this point there is nothing indicating this is disease related but rather simply his developmental path. She also explained that one of the side effects of methotrexate is causing the brain to work less efficiently over time. We won’t know when/if this will happen until it does. I’m sure I was told this side effect at one point, but hearing it again was a little shocking. I’m thankful for the chemo that has made him well but the thought of him having further issues from it is a little stomach turning. He will have another neuro-psych evaluation when he is in 2nd grade.

Trip’s MRI was on Thursday morning before we left for Arkansas. Our wonderful nurse practitioner, Sara, called me with preliminary MRI results when we were in the car. She knew I would be anxious and would sleep better with some good news (love her). Yes, good news!! The MRI showed improvement around his orbital area. Most everything was stable to improved. There are some areas of his skull that are still affected but they aren’t progressing and there is nothing in the soft tissue of the brain. Even though we haven’t seen the doctor yet for the official results, my heart is overjoyed with the confirmation of what we see everyday.

So many people have commented on how healthy Trip looks now and it makes me smile every time I hear it. He truly is my hero for enduring what he has and still finding joy in the little things. He is my constant reminder to be still, breathe, enjoy, appreciate and love.