6 months in...

 Riley is just about 6 months in to her chemo. It seems crazy that we are only a quarter of the way through. 18 months to go and it seems so far off and so hard. Her dosage has not changed, but she still has good days and bad days. The unpredictability of symptoms is the hardest part. Chemotherapy = poop. After Riley's beach camping experience she is very scared to not be home or close to a bathroom. Ugh. Her stomach pain and nausea comes and goes though I have felt like she has complained more about the pain and diarrhea these last two weeks. We will start a probiotic and try an Imodium regimen and see if this helps. Her diet is very important too- we are trying for very little sugar as sweeteners tend to make it worse. She has been feeling so tired too. She does not have much energy. With her energy focused on her body and helping it to feel the best she can, she just does not have much energy leftover to devote to school or activities. School is a big stress. Of course we continually tell her to only do what she can and to just try her best, but it does not make it any easier when you feel like you just can't keep up or handle it all. She is 13 and navigating treatment, distance learning, being away from friends, coronavirus, wildfire warnings and evacuations...it is too much. If you are reading this and have kids or teach kids, 

PLEASE BE SO GENTLE WITH OUR CHILDREN. THEY ARE FRAGILE.

Be kind, calm, loving, easygoing, forgiving, encouraging, and fun. I know Riley has a struggle that most kids do not have, but kids in general are having a very hard time. They are doing their best, but it is so hard. They may not speak it, but the stress and sadness is there. Our older daughter, who is easy going and my emotionally stable child :), had a zoom basketball practice a few weeks ago. She was out of practice and the workout was hard. She felt defeated after. When she came in, she broke down in tears and was on and off crying for 2 hours. I don't think her reaction was solely about having a hard basketball practice, but I feel it was the last straw on months of sadness in not seeing her friends, the stress of school, exhaustion, and it broke her. She bounced back of course, but it was an eye-opening moment for me. 

We have Riley's 6 month appointment next Wednesday the 14th. She will have her MRI, echo, labs, and her in person oncology appointment. Hopefully we will get a little more insight into if the Trametinib is working. Her previous labs have all been great with all her values in the normal range except her creatine kinase. It becomes elevated with treatment. The standard range is <170 and her value has been about 335 the last few months. No worries there, just a part of the treatment.  I will post another update next week after these appointments.