Sunday, August 25, 2013

The Dream

Ever had a dream where you never want to wake up? And when you do wake up you try so hard to go back to sleep to get back to the joyous moments you suddenly left in that dream state? The last five months were like that dream and now suddenly I’m awake again and in the harsh reality of the LCH disease.

Trip had an MRI and skeletal survey at the end of July. We felt confident going into them. We were hopeful until two days after the tests and before we had the results. Trip had gotten a haircut that was way overdue. After the haircut he went swimming and it was suddenly obvious to me that his scalp had red bumps on it, just like in the beginning of the disease. I tried to talk myself into believing the razor cut him, but my gut was screaming otherwise. Friends were trying to convince me he just has sensitive skin. I wanted to believe their sincere encouragements, but I knew better. His oncologist was on vacation, so we wouldn’t get results of the scans for a week or more but I thought for sure they would tell the real story. I called when I knew she was back in the office and asked about the scans. They were clear! We started planning the portal removal surgery, but in the meantime he needed a port flush just in case. We went for his port flush and I asked his doctor to look at his head. I could tell by the look on her face she knew the same thing I knew. LCH is back. I was abruptly awakened from the wonderful chemo-free dream we had been living in for the last five months.

Right now, the assumption is that he only has skin involvement since his scans were clear. We are catching it early before it has time to get to the rest of the body. The rule I have always heard is that if LCH comes back within a year, the patient must try a new chemotherapy protocol. That would mean that we are looking at the toxic chemo, clofarabine. Luckily, his doctor is of the mindset that we might be able to go back to methotrexate since it worked for him before and since we are only facing skin involvement right now. She does not want to try such a toxic drug for only skin, but if it spreads the only option will be clofarabine.

The bright side of all this is Trip has no risk organs involved, so we have much to be thankful for even when this pesky disease is inconvenient and makes my kid do things and know things that shouldn’t be any part of his young life. We are waiting for a biopsy next week to be 100% positive it is LCH, but the doctor is so certain she is willing to come up with his new treatment plan now. The red bumps haven’t gone away since I noticed them; they are more abundant. They weren’t there in March when he got off chemo; they are there now after fives months of not being on chemo. It’s back and I’m pissed.

I’m mostly sad for Trip. He is starting kindergarten tomorrow. He has looked forward to it for so long. Now, his kindergarten year will be filled with doctors’ appointments, hospital stays, chemo treatments, pokes, prods, and things no child should have to endure when they should be playing on a playground and learning to read & write. So yeah, I’m sad and pissed.

I feel like I learned so much through our first battle. I know being sad and mad isn’t going to get us far on this journey, but I’m allowing myself a pity party for a few days (and I’m reserving the right to have another bigger and better pity party when we get Trip’s treatment plan). I also know that we need to learn to live with the ups and downs of this disease. The statistics say LCH patients will have the disease on average four times in a lifetime. If this is going to be part of his life, our lives, my choice is to fight for him and with him. My choice is to find happiness and excitement in the little things and teach Trip to do the same even on the hard days. It’s not going to be easy, it’s not going to be fun, it’s not fair, but it’s all worth it to be Trip’s mom.