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.