“Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.” Wayne W. Dyer

I have never read any of Wayne’s books, and I do not plan to in the foreseeable future. I also do not know if “peace” is processing life “as it is”. But I am certain that I would be a lot less frustrated if I could do this. Try, try and try again?

In particular, I find anesthesiologists, recovery room nurses and very busy pharmacies difficult to navigate. I am constantly watching, constantly catching errors, and I have to push back way too often. Generally I can push nicely, but my encounters with anesthesiologists are unpleasant for the most part. But then today, I read the opening quote on Facebook (of all places) and wondered why I thought this would get easier. And anyway, maybe it is easier? Nico likes school, gained two pounds last month, and he even grew a little taller. We also made it a whole month without going to clinic. There are a lot of things to be happy about. But the clinic visit yesterday was a little rough, I had pretty bad laryngitis, our basement flooded, and everything happened at the same time. So, yesterday my stress level hit overload for a minute. Today, I recognize that my child is being treated for leukemia, and it was never going to be an easy road. I think that because things have gradually improved in many ways, I have gotten lazy about focusing on positives.

So here I go . . . I think Nico qualifies as officially potty-trained. Nico’s new teachers tell me that he is very happy at school, and he even naps some days. His hair is starting to look so cute. His blond waves are returning. We bought a house and we are closing on April 30th (fingers crossed). Nico’s character continues to develop and be revealed. When our basement flooded, I freaked out and Nico said, “It’s o.k. to cry mom. But not yell. I know you don’t like how it smells in here, but the house isn’t really bad.” The last clinic visit, we saw our primary oncologist and will be seeing a lot more of him thankfully. He rearranged our protocol schedule around both Nico’s school and the doctor’s assigned clinic days so that we see him more often. We are so grateful for that. He indulges all my weird questions!

As far as Nico’s progress, he has tolerated the full dose of chemo for a month now. The regimen is titrated based on his neutrophil count (and a few other things). His neutrophil count is actually just a little high, and has been ever since we stopped the standard prophylactic antibiotic (he gets a different and much more expensive antibiotic now). The oncologist states that Nico’s trend is great. He predicts that Nico’s neutrophil count will eventually plateau exactly where it should on the current dose. But until we plateau, we have to go back every two weeks for a while. They keep tight reigns on us here, and I like that. They do not want his neutrophil count too high for too long.

The other issue is that Nico still complains of pain in his knees intermittently. Actually, that is not true. Nico almost never complains, but periodically, at odd times in the cycle, he will become whiny, cranky, clingy, and beg to be carried. If directly asked, and only then, he will admit that his knees hurt. I have written before that some kids develop avascular necrosis (AVN) on this chemo protocol. It would cause knee pain, and it is very serious. But both our current and past oncologists feel this is extremely unlikely. It is rare for his age group and his presentation is not typical for AVN. The pain is intermittent rather than progressive. So for now we are just watching him and making sure it does not get worse. I was upset when I realized Nico had been in pain for two days without my knowledge. I gave Nico some pain medicine and called Jeff because we had both wondered aloud about his behavior the day earlier. As I was telling Jeff the revelation that Nico had been hurting for two days, I started to cry. Nico overheard and when I got off the phone said earnestly, “My knees don’t hurt anymore, mom. My knees are all better . . . Are you happy now?” It is so touching and heart-wrenching that my three-year old would deny his pain to comfort me. At this young age, he consistently shows true concern for other people. But in this specific situation, this is obviously not what we want at all. Nico and I had a long talk. I do not know what he understands now. It is such a hard balance – teaching compassion, selflessness with appropriate self-centeredness too. I do not want him to think of my feelings where his pain level is concerned, but I also do not want to hide my own feelings from him. I am doing the best that I can, and hoping that Nico can overcome my imperfect parenting. And so far, he is doing just fine.

Nico started school today! He has three favorite shirts, they are all yellow, and he never voluntarily wears anything else. Today when I told him it was time to pick his clothes for school, he went into his room and reappeared in the class shirt from Montessori Community School in Salt Lake City. The year that the school made these shirts was the year that Nico was diagnosed. So the design, “Toddler Galaxy” with a sun, moon and stars (the name of each of the three classes) was done on the leukemia awareness color of orange as a nod to Nico. It was really touching to me that he picked this shirt. But he has never let me forget that he misses his school life at MCS and talks about his guides and friends there everyday.

The day went well from what I understand. His guides told me that a younger friend lost his shoe and Nico stopped to reassure the boy that he would help him. I always hope that the trials of treatment will result in increasing his capacity for compassion and kindness. So these stories are important to me.

Our experience at clinic is still . . . let’s say variable. I am frustrated. Sometimes I think it is a good idea to document the difficulty and aggravation inherent in our current healthcare system, but not today. The last clinic visit was miserable, but I sent a short email touching on just a few of the issues, and almost immediately got a phone call from our primary attending oncologist. We were on the phone a long time. We had not seen our primary other than passing in the hallway, so he was unaware of what transpired. He was so eager and sincere to make things right. I do not know that he can fix everything, but I genuinely believe he will try. I wonder how you fix problems that run across so many departments? I have to focus on getting my son through this process, but I would really love to know that we helped to improved things for the next kid.

Maryland is a really friendly state! We get the best customer service here and people are generally really friendly. Recently, we made Nico’s dreams come true and took him to Monster Truck Jam. I am attaching a picture from it. I was scratching my head as to how Jeff and I created a child obsessed with trucks until I saw Jeff’s face in these pictures.