Gregory’s day was a little more challenging, today. When he woke up, this morning, one of the first things he said was that his mouth hurt. He opened his mouth, showed me where and asked, “Mommy? Will you kiss it?” Of course, I did the best that I could, to get to it, and he was very satisfied. The skin of his trunk is getting darker by the day. He also has these spots that literally, look like pen marks. Black pen marks. When I first noticed them, I tried to brush them off and then did the lick-finger-and-rub thing, before I realized that they were pigmented spots. When I showed them to the team, the doc also tried to rub them off, not believing they were pigment. The PA looked at them and said, “That’s weird.” Not quite sure what they are all about!
That is exactly what we want.
He has been on a Pulse Ox monitor since he went on a Morphine drip, yesterday. His heart rate is so high. Blood pressure is still good, though. He is also trying really hard to spike a fever. We are monitoring his temperature every hour to every half hour. The theory is that the elevated heart rate and temp and in direct relationship with his non-existent immune system. His body is majorly working overtime.
His hair started falling out today. Which, ironically, I’m grateful for. Gregory has done so incredibly well through this, so far, that THOSE thoughts creep in. “Did he get ENOUGH chemo?” “Did it work?” The arrival of hair loss is a sign that YES he did get full strength chemo. His side effects have been so well managed, I have to remind myself that not only did he get full strength chemo, he received one hell of A LOT of chemo in a very short amount of time. I can’t help but run my fingers through his hair to help expedite the evacuation of his hair. I am anxious to be at that place, where being bald is beautiful. Where people can see him and KNOW that he is a cancer patient. Where fellow families don’t look and him and go, “I wonder what HE is here for?” It’s almost like getting a tattoo, a transitory one that proclaims his current Odyssey. “Yes!!! I’m a child with Cancer. Hear my warrior roar!” *rawr*
A note regarding hairloss. When the hair does come out, there is no folicle. There is no root. It simply ceases to be attached to his scalp. There is no sebaceous plug at the end of the hair. Why all the comments on this? It shocked me. I failed to realize that the chemo would anhilate that part of his hair. I pictured whole, healthy strands of hair. Why? Dont’ ask me. It’s rather obvious that the reason it comes out is because it’s NOT healthy. *shrug*
I knew Gregory would be on a ton of medications. I was totally prepared. What I was NOT prepared for was medical decision making, regarding medications. Antiemetics: Which ones, how often. Morphine: How often. Benedryl: How often. I did not realize that I. Me. Myself, would be reading his cues and determining if that was Pain, Nausea, Itching. I did not realize that a morphine drip is not a simple pain releif. You also get a Morphine boost, when you need it and if it is over so many a day, then the dosage of the drip goes up to accomodate it. Which anit-itch do you want to use????? HUH? I do not make snap decisions very well. I need ALL the facts, figures, options and results available before I make a decision. Tomorrow I am going to work on putting together a list of all his meds. They are all necessary and NOT permanant. They are simply plentiful, for now.
We did get a nap in, together today. Also? Early this morning, before we “woke up”, it was one of those “it’s morning but I’m not ready to wake up, yet” moments. Gregory and I were sleeping facing one another, he says to me, “Mommy, roll over.” Me: “Why?” Gregory: “Cause, I don’t want to smell your breath.” Pretty cute.
Today he did not want to do ANYTHING! No TV, no movies, no Leapster, no laptop, no tricycle, nothing. His little body is working so incredibly hard to figure out what is going on and make it right. Yet, he has these oh-so-heart-breaking moments of absolute tenderness. We spend an awful lot of time face-to-face, while he is on the potty. We are either forehead-to-forhead or he has his cheek resting against my shoulder and his arms wrapped around my neck. We love, rub, pat and comfort one another. Despite the location, they really are some of the sweetest moments. It is where I run my fingers through his hair and where I first noticed his hairloss. Thankfully we brought his potty seat and his Ikea step stool (doesn’t everyone have one???). The step stool is the perfect place for me to perch while loving him up. Speaking of which, I’m gonna go do that now.
Thank you to everyone who offered to get Gregory his Dum-Dums and thank you Polly for just “gettin’ it done.”.
’til later, Gotta jet.
- Music:Oingo Boingo ~ Dead Man’s Party