Another anxious and sleepless night. We have plans to received our “walking papers” tomorrow. Monday Feb 15. (Which, now that I look at the clock, is today.) At first blush, the response to seeing Gregory this last week is to go “Wow! He looks GREAT!” I’m feeling like I SHOULD be excited and joyful about his turnabout. The truth is, I’m far from happy. I’m angry, agitated, exhausted, frustrated, angry. Did I say angry twice? I’m angry and pissed off at this disease. Not graft versus host. Childhood Cancer receives ALL of my anger. The last, roughly, four months have been challenging. On so many levels. We are 10 days away from his diagnosis date. So far, one year has been ripped from his life. At his age, that’s 25%. One year that we cannot get back, reclaim or recoup. His first year of pre-school. A full year’s worth of special occasions and school events with his sibs. Here’s the kicker. We are far from done, too. With his increased steroids, we are back at just-after-transplant medication levels. Significantly higher on a few, too. He’s even more immunocomprimised and the longer he is on steroids, the higher the risk of steroid related side effects. Which are nasty. Steroid induced diabetes, high blood pressure, loss of bone density, just to name a few.
His “doing great” status is a direct correlation to his steroid dose. He no longer has stomach cramps, his diarrhea is gone, he hasn’t heaved in over a week, he is almost off TPN, he is tolerating higher and higher rates of his G Tube feeds and he is happily eating “real” food. All due to his level of steroids. Yay? Not really. If this was a course of treatment that didn’t have it’s fair share of hefty side effects, CERTAINLY, I’d be excited. Except it’s not. Not only that, but we have no idea what is in store for us. We are anxiously waiting for Seattle Cancer Care Alliance to get back to us with what our next treatment plan will be. The gut and colon biopsy results have come back and showed no signs of GVHD. No surprise there. We are about to embark on a roller coaster ride of “Will this work?”. There is nothing available that can tell us which option will work. We just keep trying things and hammer at it, in hopes of convincing his marrow/blood and his body to live together, peacefully. At this point, I don’t even know if they will begin his re-immunizations this summer. Mustn’t forget THAT part. Gregory must receive ALL of his immunizations, again. He has no immunity to anything. He needs to re-acquire it, when the time is right. So, if you have measles, mumps, rubella, chicken pox, diphtheria, tetnus, polio, hepatitis A, B or C and whateverelsetheygetimmunizedfor, please steer clear. Thank you, very much.
I know this to be true: We need to get out of this hospital. It’s driving me insane. With Gregory’s increased steroids, his moods and behavior is reactive (more like radioactive) and fluctuates on the turn of a dime. I need to get him where he can rant, rave and scream all he wants. I feel a certain sense of responsibility to keep his noise at a certain level and it’s not easy. We need to be able to just simply cuddle for hours at a time without the interruptions of someone in our room every hour. He has been experiencing scary dreams, too. For the last several nights. He can’t/won’t tell me what they are about, but he does let me know he has them and I comfort him through them. His mood changes are rather volatile and require immediate addressing. Otherwise his temper escalates. This is not the result of an over protective mother. Gregory knows about patience and has plenty of it. These meds are just really whacking him out, right now. Which means I am frazzled and on edge, too. We both need a healthy dose of privacy and peace.
Monday is day 46 of 53 spent inpatient, since December 23rd. We are ready to blow this Popsicle stand. If we are released today, we will be back Friday for Dr F to take a look at him and see some test results. Hopefully by Friday we will know and maybe even begin his long term treatment plan. What I mean by “long term treatment plan”. I don’t know. From what I can gather, kids with similar donor matching and symptoms, this looks like a 3-4 year time frame to “normal”. Heh. Did I just say “normal”. I meant him being able to eat solely by mouth and have firm stools. With occasional life long flares. Illness and stress induced flares and flares that happen just because. Have I mentioned that this is not the only “side effect of transplant”? Yes, I am spiraling a bit. It is going to take a while for me to get through this and be OK with what Gregory’s future has in store for him. Currently, I am walled off and closed off. My circle of security is terribly small.
I’m far from ready to step back into society. This past Thursday I dipped a foot in the water. Every year our kids’ Montessori classrooms go Ice Skating for Valentine’s day. I used to ice skate and this is one of my favorite school events. The skating rink we go to is out-of-doors. Therefore I felt fairly safe from “cooties” and decided to attend. I drove down to the rink and met the kids there. We have about 150 students, six teachers and the chaperons that attended. A lot of people. It was the first school event that I’ve been at since last February. My anxiety was through the roof, not only because of the germ factor, but of seeing the parents and teachers and talking about Gregory’s condition. Trying to navigate that line, “Yes, he has no evidence of Leukemia since his last bone marrow aspirate. But………” I think we don’t know of Childhood Cancer families because we become reclusive. Sticking with our core of people who “get it” or who try really hard to “get it” and don’t pretend to “get it”. Curtis was off in his own little world with his friends, but AnnMarie stuck to me like glue. It was so nice to spend a few hours with her, in a different atmosphere. At one point I was standing alone, just watching all this “normal life” activity playing out before my eyes. Kids and adults, laughing, playing, chatting and just going about their daily lives. Without a cloud over their heads. Then it hit me….. maybe not. One of our Montessori families Father’s had died, just about 10 days prior. From spinal cancer. This families life has been rocked and yet their daughter was out on the ice, skating her little heart out. We really don’t know what’s going on in other people’s lives. I also found out that another community member had died. Another father, husband, son……. It seems that once something like what we are experiencing, has touched your life, similar circumstances seem to pop up. It’s almost as if like is gravitating to like.
We have lots of work ahead of us and I have absolutely no idea what to expect. This is not a situation where I can send my request out to The Universe and expect to have it filled. I can’t work on my inner self in order to create health and healing for Gregory. Gregory will regain health and heal when his body and the right combination of medications is found. It could be in the next few months, it could be in the next few years. We will take each day as it comes, rejoice in our own way and plod on. You can’t get much more complicated than DNA. The Human Genome Project took 13 years to complete and is still in the works. Gregory has two different sets of DNA in his body. Looking at it with a really wide angle lens, he IS doing quite well. I just find myself wishing we had never met Childhood Cancer. Can’t fault me for that. ’til later. Gotta jet.Some info for the data curious….. Counts are stable. Hematocrit is holding, low, but holding. He is gaining weight. 17.7K today. Nearly a three pound weight gain. Ugh! Steroids! He is continuing to throw some “odd” white cells, but probably related to GVH. Glucose is up. Closely monitoring it for steroid induced diabetes. His albumin levels have been fluctuating. Hasn’t needed an infusion, but keeping a close eye in it, too. Overall, he’s pretty stable, but still needs close monitoring. Oh yeah, Dr Reynolds stopped by on Thursday and we were able to get a Kodak Moment. He was tickled that we wanted a picture of him with us. Really glad I remembered to ask!