Perspective

Simon watching Yo Gabba Gabba and making his funny face while he got his last chemo.  The onsie is from his Grandma who is a breast cancer survivor and I thought it appropriate for the occasion.

Simon is all done with chemo.  This week he has some scans to check if the cancer has spread.  They don't expect to find anything but we have to be sure.  I've been so sick of this process I've given up updating the Care Page I set up.  The last four rounds of chemo were all followed by fevers.  So much hospital.  Mom and dad were here for a few weeks which was a help.  But still, I'm sick to death of asinine decisions like last time he was in the hospital.  He woke up with a fever and I just wanted to get him to the hospital so I didn't give him his GCSF shot which he gets every morning.  I figured he could get it there.  Big mistake.  At 9:00 AM I told the triage nurse (the first nurse we saw) that he gets the shot in the morning but we hadn't given it to him yet.  I asked for it a few times.  It never happened.  I was so flustered with Blaine trying to keep Simon content while being hooked up to his IV that I just gave up and figured they didn't think it was a big deal.  He wasn't going to get it.  Whatever.  Then the night nurse came on and said they scheduled it for 10:00 PM!!!11!!!1!  I was furious.  Who "schedules" a shot for a one-year-old that late!  We'd have to wake him up.  I'm sure it didn't sound like much to the nurses and whoever it was that made that decision.  But when you've seen your baby go through as many pokes and stress as Simon you just want to make things as easy as possible and not induce any more trauma.  I went a bit Mama Bear on them but Blaine went full on Papa Bear.  It's things like that that really have me sick to death of this whole process and without much grace, unfortunately.

So finally they called yesterday to schedule his tests.  They have his bone scan set for today.  He can eat until 6:30 this morning so we may well have to wake him to eat.  His scan isn't until 1:00.  I pleaded for an earlier time.  That's all they had.  I went full on Mama Bear myself.  I was screaming and crying.  They don't do any sedations until 1:00 they said.  So you're saying he basically can't eat all day I said.  I told them this is insane several times.  He's one year old.  He doesn't do well if he can't eat.  He doesn't understand why mom and dad aren't giving him his baba.  Distract him with toys she said.  I felt completely patronized, like I'm to stupid to have figured that out myself.  I've been through this before.  I know my son.  I know he won't do well.  I know I can do what I can but it won't be much help.  Even writing this now I'm enraged.  I feel so powerless, so not in control.  That's one thing I can't stand, to not be in control.

This morning I woke up around midnight to Simon crying.  He sleeps like a champ now but every now and then he'll wake up crying for 2 or 3 minutes and then go back to sleep.  This was one of those times.  I felt kind of out of sorts so I grabbed some grapes and headed for the computer.  For some reason I went and read this blog I've been following.  It's about a 8-month-old that was diagnosed with a brain tumor this summer and died a few weeks later.   It's absolutely heartbreaking.  I don't know why but I started reading it from the beginning.  They found out their son had a tumor, had successful surgery and things were looking up, then find out it had grown back in two weeks and they brought him home to spend his last days.  He never had a chance. 

It was strange because I kept thinking, "I remember that" and "I remember when Simon was going through chemo" like this was all some distant memory.  In a way it sort of feels like that.  He had his last chemo and his last fever.  We all knew he'd have a last fever.  Going home after the last chemo didn't even feel all that great to me as I knew we'd be back before long.  I did get choked up when our sweet nurse helped us to the elevator and then down to the car after his fever knowing I'd likely never be back on that floor again.  Things have gone back to semi-normal.  I worked a fairly normal schedule last week and we just had one early routine doctor appointment.

Reading that blog made me feel silly, in a way, for getting so upset over late shots and late scans.  My boy is done with his treatment (God willing).  Doctors are confident he's been cured, pending scans notwithstanding.  His hair is coming in and it's pretty much white at this point.  We're getting excited to take him back to church on Christmas morning.  Things could have been so much, much worse.  I need to remember that.  Yes, I need to advocate for Simon as he has no voice and The System isn't perfect.  But I need to also remember that 6 months from now, 6 years from now, none of what I'm getting so upset about will matter anymore.  I will have my dear beloved son who's being a big terror, no doubt, just as he should be.

20 Words

Simon's oncologist was asking the other day if Simon says 20 words. He loves to babble but doesn't say a ton of words.  I tried to count them earlier today and got up to about 15.  This is really more for posterity than to really see if he knows 20 words.  I'm sure I'm forgetting some.  Do animal sounds count?

1. Baba
2. Mama
3. Dada
4. Bye
5. Dog
6. Bear
7. Cat
8. Book
9. Diaper
10. Baby
11. Ball
12. Bubble
13. Shoes
14. Cup

Smack

So we're back in the hospital for Simon's last chemo.  This evening he was getting tired and cranky which means he plays with his IV.  This time he had one tube in each hand yanking on it like Pa Ingalls working the team with the plow.  Then he chews on it.  then he grabs the bag and just yanks.  I was trying to get everything ready for him to go to bed and a bit frustrated because he won't leave the thing alone.  I very lightly smacked his hand because telling him no 300 times did no good.  I don't believe in physical punishment at all but there's not a lot I can do.  All his toys had been flung out of the crib.  I can't distract him when he gets like that.  I can't take the IV away.  I didn't know what else to do.  Just after I did that he took a swipe at me.  How can I tell him not to hit if I'm going to not practice what I preach?  It really hit home that physical punishment is really not for me.

Tonight when I gave him his bottle he was all curled up on my lap like when he was all new except he was almost folded in half to fit there.  I studied the shape of his lips and it reminded me of when I first really saw him.  For some reason that was something I focused on then also.