Two-Year Mark

This is the two-year anniversary of Trip being off treatment. What an absolute blessing that we have gone two years without any major health issue and no treatment!

Trip went through a couple of months at the end of 2nd grade where he was sick often, tired for no reason and had no energy. Of course I panicked and overthought every little thing. His oncologist, Dr. Martin, and the entire CCBD team at Children’s graciously still take my calls seriously and entertain my need for answers. His blood work has remained normal even through that strange period of illness and fatigue. He continues to have little LCH lesions pop up on his scalp, but thankfully his body is doing what it needs to do to knock those out without treatment. He only has one little area of concern on his scalp right now.

He has grown in height and gained weight this summer (he gained 6 lbs in one week with his grandparents in Arkansas!). It’s comforting to see him grow given his endocrine issues. The DI continues to be managed easily and Trip is learning more about how to manage it himself. He is recognizing times when his med is wearing off and has even had to alert his teacher when I have forgotten his morning dose… oops.

We put him back in therapy after Thanksgiving last year due to unsettling changes that increased his anxiety level. For obvious reasons, he will likely deal with anxiety for the rest of his life, but I’m hopeful he can learn tools to deal with it properly. Recently I was reminded that the emotional effects of treatment still bother him when the alarm on my phone went off using the same ringtone I used to time when to administer his chemo pills. His body shivered and he explained he didn’t like sound because it reminded him of having to swallow all those pills.

He is starting 3rd grade tomorrow. I couldn’t be more thankful and proud that we have made it to this point. I’ve tried to read some of my old journal entries, but I always quickly stop. I’m still not strong enough to relive some of those moments, but just the thought of them increases my gratefulness for this moment.

Test Results

Trip had an appointment with his oncologist a couple of weeks ago. The scaly patches on his scalp have spread, so his doctor is concerned. He sent him for a skeletal survey to be sure the disease hadn’t flared up and spread to his bones again. Thankfully we got news today that all of his bones are free of lesions, so at this point we know his scalp is the only area affected. We will be treating it with a steroid shampoo for now and hopefully won’t see any spreading to other areas. Trip is thrilled the doctor thinks chemo is unnecessary at this point for only skin involvement.

I feel like we are teetering on the edge of good and bad news. I’m thankful that his bones are healthy, but I’m worried what will happen if it continues to spread. Trip’s doctor takes comfort in the fact that statistically a “burn out” phase can happen at the age of 8, meaning Trip’s disease could have run its course by then and never be an issue for him again. I know from support groups and other moms that there are many who deal with the disease long after the age of 8, but this is my greatest hope for my son. We are on a good track after being off treatment for over a year, so I must veer off the “what if” road in order to preserve my sanity.

Exciting new research is being done with the BRAF gene that will hopefully lead to recognizing an LCH flare before serious damage is done to the body. It could also help identify better treatments for this unpredictable disease. That is something to be excited about! I have hope.

One Year!

I can’t believe my last update was a year ago. I think part of me wanted to ignore updates thinking I could possibly jinx Trip’s good health if I commented on how great things have been.

This weekend marks a full year that he has been off chemo. What an unbelievable milestone!!! We are thrilled that he has made it without any treatment for a year. We see his oncologist every two months now (but he’s still on speed dial). We see his endocrinologist every three months and his ENT every six months unless anything comes up in between.

His DI has been manageable for some time now and since he is getting older his endo has left it up to me how to best give him his doses, which helps get through any special event, practice or class without a breakthrough interruption. We are starting to teach him to be more aware of his breakthroughs so hopefully by middle school he will be able to manage these himself.

There have been concerns with his fine motor skills. Who know if this is a disease thing, treatment thing, or a Trip thing. He will see a neuropsychologist in November because of the disease and time spent on methotrexate, but I’m honestly not expecting any upsetting news at this point – only useful information.

The area of concern on his scalp that was there a year ago is still there. It hasn’t gotten any worse and only spread a little. I think his little body is doing a great job of keeping it at bay, but of course I’m still nervous about it. I’ve decided that feeling will never go away. We see his oncologist in September. I expect an MRI soon after to keep on the six month track.

September is Histiocytosis Awareness month. If you’re on my Christmas card list, look for something in your mailbox. Trip’s cute little picture is on the Dear Friends Campaign brochure along with many others affected by this disease. Our mission to raise awareness for histiocytic disorders is still at the top of our priority list even though we are celebrating a year of excellent heath for Trip. Children’s Health asked us to be on the Center for Cancer and Blood Disorders Family Advisory Council and we hope to make a difference by helping others who have had a heartbreaking diagnosis as well giving the hospital insight on what worked great for us and where we would make changes. I’m thankful for these opportunities as they keep me grounded and reminded how important the little things are in life.

Trip is starting second grade tomorrow and I couldn’t be more thankful. We are celebrating a year off chemo and a new school year! Love to all.

Results Good - Skin Bad

The results of Trip’s scans were good. The MRI showed minor improvements. He will always have pituitary abnormality, but the thickening of the pituitary stalk has shrunk. Nothing new was apparent, which is awesome news! The skeletal survey showed the affected bones have healed or are healing. We know that will take time. Overall nothing looks like active LCH inside his body.

I felt good about the results and then Dr. Martin found an area on his scalp that is obviously LCH. Stopping chemo with lesions isn’t promising to the doctors or me. We believe the methotrexate is suppressing the disease, but once off it will likely come back. Dr. Martin said he would defer to Dr. McClain (histio expert) as to what to do if it does come back. I will push all doctors to put him back on methotrexate so he can live as normally as possible (if it is only in his skin), but realistically he might need something harsher.

He finished chemo this weekend and will stop for a month. We will see what his body does in a month’s time without treatment. I for one am down on my knees praying to the sweet heavens above for his little body to prove how strong I know it is and kick this disease in the butt once and for all.

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.”