A Year Later

We are nearing the end of Trip’s journey on oral methotrexate. At the end of this month it will be one year since LCH returned and he was put back on methotrexate. He will have an MRI and skeletal survey on Thursday of this week to be certain there isn’t any new sign of histio in his brain or bones. This last year was a lot easier than our first two years with this disease, but that doesn’t lessen the scanxiety that I’m feeling. I actually don’t even know if the scans are causing the nervous feelings this time. I fully expect those scans to be clear and show was what we know – that he is a healthy little boy all things considered. I’m nervous about losing my dependable friend, methotrexate. Along the journey we learned to not think of his big bags of chemotherapy as poison, and we learned to give thanks for them. This last year, those little yellow pills have kept me comforted and sane. I have learned to take one day at a time, one moment at a time, but the fear is real that once the drug is no longer in his system, histio can pop up out of the blue and change our lives yet again. I know he cannot stay on chemo indefinitely and as his doctor says, “we need to see what his body will do on its own.” I think back to how resistant of chemo I was in the beginning and now I am so thankful for it I don’t want to lose it.

Trip has continued to take his pills as he needs to, but each time is hard on him. He started this journey just knowing this is part of his life, but now he is old enough to realize not everyone has to go through what he has gone through. He has asked some tough questions through tears (usually while we are begging, bribing and threatening him to get his chemo pills down). He has asked why God chose him to be sick. He asked why God wanted his friend with histio to go to heaven so soon. These are questions I have asked myself many times and while I know my beliefs and my adult interpretations, they just seem silly when explaining them to a child. His answers to these questions could be lifelong searches for him and the answer could change many times, as it has for me. After his port had been removed, he told us that one of his buddies dug him a grave “in case he didn’t make it through surgery.” I asked him if that scared him and he said, “nope!” He takes it all in stride but his thoughts and feelings are obviously changing and will continue to as this journey progresses for us.

We’ve also had a year filled with fun, excitement, and “normalcy” if there is such a thing. Trip had a great time playing soccer in the Spring. His stamina is not what the other boys have, but he still had a good time cheering for his teammates from the backfield. He had a great year in kindergarten. He learned much more than I expected, and he socialized a lot more than I wanted, which meant he got in trouble regularly. If you ask him he is only in school to make people laugh and have a good time. He has explained many times that there is “too much work before recess and after recess.” He got his port out as planned during Spring Break week and that has given us much freedom. He got in the lake this summer for the first time in four years. That was a big deal for him.

Colson and I led a Circle of Friends (support group) meeting through the Histiocytosis Association in March. We met many new friends and reconnected with others we have met on this journey. We learned from an adult what it feels like to be on methotrexate, which was eye opening. We will have another meeting next month. It has been a blessing to connect with others facing some of the same challenges in this life. While none of us can fix another’s problems, leaning on each other has created a sense of peace for me and hopefully the others.

There is more life to live and more lessons to learn, but right now we are enjoying this moment and each other.

Call It A Day!

Trip is doing great all things considered. Chemo isn’t going as smoothly as it was in the beginning, but it is only because Trip’s mind takes over negatively on chemo weekends. He takes numerous pills every single day and doesn’t bat an eyelash. On chemo weekends, his gag reflex takes over and getting the pills down is a challenge. He only has an issue with the methotrexate pills. The other pills go down easily, so I know it’s a mind thing for him (and I can’t blame him). He still makes it happen through tears - usually after 30 minutes of convincing him it is the best thing for him.

His port turned 3 on February 11. As a foreign device in his growing body, it is not holding up. At the beginning of the year, we had some testing done that showed the port should be working fine, but the nurses have had a terrible time flushing it and getting blood out of it.

We went in for a port flush and regular check up before chemo last week and the port wasn't working at all. Our wonderful nurse Amanda stuck her head out the door to ask Dr. Martin what he wanted to do. “It’s not flushing at all and won’t drawback. Do you me to try TPA or call it a day?” Trip, now full of hope, was standing on the bed in the office. He screams at the top of his lungs, “Call it a day!!! Call it a day!!!”

Luckily, Dr. Martin agreed since we have only used the port for blood draws in the last year. Surgery to remove Trip’s port is scheduled for tomorrow morning. We are all happy to see it go but still a little nervous about the surgery. We are risking another surgery in the future if he has to start intravenous chemo again, but we’ll cross that bridge if we ever get there.

We appreciate the continued prayers for healing and for a successful surgery tomorrow.

Valentine's Day Love

Trip: Mom, I have a girlfriend.

Me: Really? I asked you yesterday if you had a Valentine and you didn’t. You got a new girlfriend today?

Trip: Yep! (obviously proud of himself)

Me: What’s her name?

Trip: Carrie(or Keri or Carey or anything else that we didn’t consider when trying to write a Valentine to a girl we don’t know). She has cool blue shoes.

Me: What did you say to her?

Trip (confused): Nothing.

Me: You didn’t ask her to be your girlfriend?

Trip: No, I just decided she would be. Reese told me her name. And she has cool blue shoes.

Me: Does she know your name?

Trip: Nope.

Me: Are you going to ask her to be your Valentine?

Trip: Mom, I was thinking about that. I think I will, but I’m embarrassed! (Hiding his face)

Me: You don’t need to be embarrassed. You are a sweet, cute boy and she’d be lucky to be your girlfriend. Tell her you like her shoes.

Trip: I think I know why her parents named her Carrie… because she cares about a lot of people. (So innocent!)


Trip decided he wanted to get her a little present for Valentine’s Day, but we didn’t know how to spell her name. The only communication the lovebird(s) had all week was a staring contest. Trip claimed she wouldn’t quit staring at him, but I didn’t explain that it takes one to know one in a staring contest where no one said “go”. Trip told me she is in Ms. Martin’s class, so I was sent on my first kindergarten recon mission.

My mission: find Carrie’s/Keri’s/Kary’s cubbie to figure out the spelling of her name without looking like I was trying to steal from the kids’ backpacks. (While I was sure the backpacks held nothing of interest to me, I was hungry and I imagine there were some tasty snacks in some of the lunches – maybe even some from over-achiever moms who cut out cute heart-shaped cookies, but those would have just pissed me off instead of feeding my hunger… I digress).

Friday mornings are especially busy at school because there is an assembly each week and Valentine’s Day was even busier, so I was sure I could sneak down the kindergarten hall unnoticed. As I shuffled through all the backpacks, I met my first obstacle. A sweet little girl had a blister and needed a Band-Aid. My thoughts: Too bad, I didn’t bring my pocket first-aid kit. Move it on, sister! Don’t you see I’m a spy?? My actions: Postpone mission and quickly get her to the nurse. As I’m sprinting down the hall in order to get back to the task at hand, she’s screaming at me, “All I can do is scoot! Slow down! I have a blister!” My thoughts: Suck it up! Get tough! You’re barely bleeding! My actions: Go back and walk slowly with her telling her it will feel much better with a Band-Aid. Finally we got to the nurses office, and I headed back to the mission.

Back to shuffling through backpacks and talking to myself about why kindergarteners need so much stuff at school when I got busted by Trip’s teacher. “What in the world are you doing?!” Dang! Cover blown, so my only choice is to recruit her. I quickly explain the mission and soon we find the cubbie and the spelling, “Carrie”. (After all that it’s spelled the traditional way. Good grief.) Not only does his teacher help me, she calls Trip out of the classroom for him to point his “girlfriend” out to us! Score! Mission completed.

After the morning assembly, I get home and write the To/From on the little stuffed animal Trip picked out for his main squeeze. I take it back to the school for the Valentine’s Day party later so he can give it to her. He refuses, “Mom, you just put it in her cubbie! I don’t want to talk to her!” After explaining how she might not get it and might not know whom it’s from (since this poor girl has no clue she’s Trip’s girlfriend), he works up the courage to wait for her outside her classroom. I see Carrie’s mom leaving the room, so I explain what Trip is doing. She called Carrie out and suddenly I feel as nervous as Trip! It was the moment of truth, but it in reality it was more like a hit and run. Trip stepped forward and didn’t say a word while he shoved the toy puppy in her face. Carrie took the dog and with one hand on her hip she said, “This isn’t mine.” I pushed Trip towards her and hissed, “Tell her Happy Valentine’s Day!” Trip barely spoke the words. Carrie continued to insist the dog wasn’t hers until her mom explained what was going on. Trip turned on his heels and fled. I chased after him yelling over my shoulder to the victims, “Have a great weekend!” and hoping they didn’t think we were the freaks we appeared to be.

After his nerves calmed down, he quickly got back in his bigheaded mindset and said, “Aren’t you proud of me? I knew she’d love it.”

Christmas Blessings

We are blessed. We are so blessed. Tuesday my phone did not hold a charge after Trip & I left the doctor because we had so many friends & family call to ask about the scan results. I was on the phone and texting the majority of the night – so much so my phone kept dying. Thank you, my friends, for remembering and checking on the results. We are so blessed to have so many people care for us and think of Trip’s wellbeing.

The MRI showed nothing new or spreading, which is great news! We are so thankful for that. To get a stable report on the brain and orbital area gives me such relief. There are areas on his femur, arm and (possibly) jaw that appear to be active lesions and will need to be watched. He has had lesions on all areas in the past, so we know that these areas will show up on the skeletal survey for some time. When Trip was first diagnosed he had a huge bump on his skull that eventually turned into a huge hole in his skull. We have watched that lesion for years on the x-ray and now it is completely gone - a slow process but at least it is gone now. The thing with x-rays is they can show the damage to the bone(s) but it doesn’t necessarily mean there is active disease in those areas. A PET scan would be the only way to know for sure where the active disease is in his body, but since he has already been exposed to so much radiation we don’t think one is necessary at this time.

We are truly relieved and so thankful. While Colson & I would love to hear there are no lesions anywhere and nothing is showing up on any of the scans, we will take a “nothing new or spreading” report. We have so much to be thankful for and are so thrilled Trip can stay in school and enjoy his active social life. He will stay on the at-home chemo treatment for the foreseeable future, but we will gladly handle that. He finished a round this weekend and other than being tired and spitting methotrexate pills all over the bed at midnight, it went smoothly.

I hope everyone has a wonderful Christmas with loved ones. Let’s hug our little ones and big ones tightly and always show them how much they are loved.

Faith > Fear

Scanxiety is at an all-time high. Maybe it’s a combination of impending icy weather, added responsibilities ungraciously required of us, not being ready for Christmas, work, Colson’s business, and scans. Who knows… I’m anxious, and I’m blaming it all on the scans.

Let my faith be bigger than my fear.

We check in tomorrow at 9:00 a.m. Trip will have a skeletal survey then an MRI. (Cross fingers that we have no issues getting there with the expected bad weather and that Colson and I can both be there when Trip goes under.) The plan is to go over the results on Tuesday and figure out next steps.

Let my faith be bigger than my fear.

I constantly rely on the histio support group but have had to force myself off of the webpage. It is a great place to draw strength, but sometimes it gets to be more than I can process. There are more sad stories than good ones since we are all looking for comfort in each other and pleading for someone to make it all ok. Recently, I’ve read about too many cases of histio returning, and my heart breaks for those families while at the same time fear for my own family takes over.

Let my faith be bigger than my fear.

I have to stop every so often to remind myself to stay in the moment, to appreciate every single minute I get with my loved ones, to have an attitude of gratitude and to remind myself that I have handled many roller coaster rides over the last few years (y’all know I hate the literal and figurative roller coaster!). It is what it is. No matter how much worrying I do, it won’t change the outcome.

Let my faith be bigger than my fear.

I realize how whiny I sound, so I'm going to ask for a pass today. :) Prayers and calming thoughts are appreciated now and always. I’m working on myself but there are days I struggle, so I rely on those of you who sincerely support us with your prayers, words and actions to get me through.

Let my faith be bigger than my fear.

“When you have a bad day, a really bad day, try and treat the world better than it treated you.” ~Patrick Stump

This weekend we will start treatment six of at-home chemo. So far (knock on wood!) everything has gone smoothly and the treatment appears to be working on the outside. Trip has an MRI and skeletal survey scheduled for December 6 that we hope will prove the treatment has kept the inside free of LCH. Other than being tired, Trip has had almost no side effects.

Trip’s beloved doctor is no longer his doctor, so we are warming up to a new doctor. I’m sure in time I will have as much confidence in this new one as I did with the one who eventually found a treatment that worked for Trip. We miss Dr. Appel and will always be grateful to her.

Trip has learned so much in kindergarten. He is reading, writing, doing math… things he wasn’t able to do just a few short months ago. He still feels like school is a lot of work, but I believe he is thriving with new friends and opportunities around him.

The last few months have been a little challenging for our family. I’ve felt a little off kilter – like I’m in the trough of a wave while everyone else is on the crest. There hasn’t been one specific event but many, and there haven’t been so many that I can’t remember what my mom always says, “This too shall pass.” The one thing I know for sure is that hard times call for big support systems, and boy do I have a good one...

From my mom who drops everything to come be with me when I need her;

To my dad who calls to hear my voice and ask what he can do to help me;

To my husband who constantly reminds me I’m his world and how great our life is together;

To my special friend who reminds me that a fight with Trip over clothes is a blessing and how she would give anything to have a fight with her son;

To my thoughtful friends who still cook for my family even though we aren’t in the hospital anymore and my life can’t be any busier than theirs;

To my childhood friends who tell me they are proud of me and that my family is always in their thoughts and prayers even though I may only see them once a decade;

To my dearest friend and confidant who never judges my parenting mistakes, reminds me what is real in this world and lets me give her advice so I can feel normal;

To my sweet friend who comes over for coffee and does my hair so I can feel special;

To my thoughtful neighbors who always check on Trip and allow their children to be part of his support system;

To my group of friends who remind me that time away from home and child is a good thing and always leave me more refreshed;

To my caring friend who always knows when it is a chemo weekend and constantly checks on us (and lets me snuggle her baby to calm me down);

To my closest friend who keeps me smiling with texts, ecards, and funnies about her life going on miles away…

These people are the ones who make hard days easier to handle and tough times not feel so long. I’m so thankful for my support system and know that there have been days I couldn’t have made it without some or all of these people. My wish is that I can be to someone what they have been to me.

Confirmation & Treatment

Trip had the biopsy last week and the results confirmed LCH. We will start at-home chemo this weekend. The doctor is willing to give it two cycles (3 weeks) to see if there is any improvement. If not, we will reevaluate from there. The doctor is determined that it will not spread this time. I’m determined too, but I wish she would be here to help me. She’s leaving Children’s at the end of September… oh boy am I going to miss her.

I forgot to mention in the last post that Trip broke his finger this summer. A broken finger pales in comparison to LCH, but we had to see a specialist last week because of how LCH has affected his bones in the past. The good news is it should heal beautifully in time and LCH will have no impact on the healing process. It only hurt him the first few days and doesn’t even bother him now. He’s one tough cookie.

Trip has an appointment on Thursday with his endocrinologist, who does not know the LCH has returned. The DI treatment shouldn’t change with this latest development unless we have to move to a stronger therapy at some point, but I’m still glad we are seeing her now to be sure.

I’m so thankful he can continue to go to school and we can tackle chemo on the weekends. I know he would hate to miss recess. ☺ Trip’s godmother reminded me of how I need to approach this situation. She said, “Mand, you gotta keep living life.” And she’s absolutely right. For me, for Trip, for our family life keeps going. There may be some limitations, but we need to live thankfully and joyfully in as many moments as possible. The goal is to approach this as a simple inconvenience instead of wrapping it up in emotional turmoil. Hopefully we can do it taking one day at a time.