Thursday, November 18, 2010

No duct tape and silly putty!

Josh went to the ENT today and he assured us that there wouldn't be any major complications from the perforated septum. Surgery, like I had read on the internet, would most likely be unsuccessful. But, they can put a shunt/splint thing there if needed. For now, he is just going to try antibiotics. I can't say enough how impressed I was, again, with this doctor. (He is the same doctor that took care of poor Benson when we went through all the crazy ear infections, tubes, mastoiditis, and then the PICC line.) He went above and beyond to make sure that we understood what was going on, how it may or may not be related to Glioblastoma, and even took an active interest in our family and our situation. So... everything is what it is. Not a big deal, in the grand scheme of things.
So, while I did dream that Josh had a hole in his nose, I guess I won't be trying to fix it the way I did in my dream: with anything I could put my hands on- including duct tape and silly putty! Ha! (Seriously, if only you all could visit my dreams.)
Josh has another round of marathon appointments on Tuesday: MRI, blood work, Dr. Coleman, infusion! Here we go again!

Tuesday, November 16, 2010

Perforated Septum

Something new to add to my list of things that make cancer dumb (aside from the obvious):

A perforated septum. What's that? Well if you stick your finger in your nose... haha... you are doing it now, aren't you? You can feel a membrane that separates your nostrils, right?

That is your septum.

Josh no longer has one. It's just a gaping hole. He told me there was a hole. I didn't believe him. I got out the flashlight and looked in his nose. Sure enough. Big hole. Nothing separating his nostrils. Holy crap! I had to google, of course and found out that it is called a perforated septum and that it is rare but can be caused by trauma (like his surgery), cancer (which he has), or Avastin (the drug he may or may not be getting as part of a glioblastoma study).


The upside? He says he can breathe better. Ha!

The ironic thing? I had a dream probably a week ago that he had a hole in his nose.

Tuesday, November 9, 2010


Before I get to the actual post, I just have to post these pictures of Eliza for two reasons:

1. Um, they are adorable and of course I want to share them. My friend Mindy took them and just brought me the disk the other day.

2. My camera is broken and so I honestly haven't had pictures to post. I have an AWESOME video camera (Thanks Lindsey) but haven't figured out how to upload the videos to the computer. Until recently, we didn't have a computer with enough memory to do so. I am sure it's not hard, I just need to take the time to do it. So, these pictures are to spruce up all the boring text!

So... first things first: JOSH UPDATE
Josh had another MRI on Tuesday, October 26.  Dr. Coleman said that it looked nearly identical to the scan a month ago which means that his tumor is stable. He also let us know that stable is the best you can ask for. Glioblastoma is aggressive enough that those diagnosed will never be in remission. So... stable is successful. We will gratefully take it! He just finished another round of Temodar (chemotherapy) and has been officially off the Dexamethasone (steroids for swelling) for a week. So far so good. No seizures, no drastic change in coordination. He does have a random rash all over his body (arms, legs, torso). It drives him nuts. It not only itches, but is painful. We found out is called Folliculitis. It seriously looks like chicken pox. We actually wondered if it was either that or shingles. Hmm... what do ya know? Random rash that sounds made up.  After reading what wikipedia has to say, I am not convinced that it is said Folliculitis, but it does say that malignancy can cause it. So... maybe it is. Dumb cancer.  

That being said life is normal-ish. I continue to be impressed with a couple of families going through the same illness. When I read their blogs I realize I have a lot to work on and that I am grateful I have their examples. I've been using blogger as a journal, I just hope that I haven't made myself out to be a big whiney-pant. I feel like I should apologize to anyone who has read this blog and been annoyed by my relentless purging. Writing has proved to be very therapeutic for me, but I realize I should try harder to be more positive and focus more on my boys, my baby and our everyday lives.  Please accept my apologies for past posts. 

Halloween was a lot of fun because we had Joseph and Martha and their family come and visit. We had a great time visiting, playing games, and taking the kids to the pumpkin festival and trick or treating. My mom always has an awesome Halloween dinner for us. It's been the same ever since I was a little girl. Dinner in a Pumpkin!! I told the boys that is what we were having and this was the following conversation between Kimball and myself:
Kimball: "Mom, so then what is it that we are eating?"
Me: "I just told you, Dinner in a Pumpkin."
Kimball: "I know, but what is it called?"
Me: "Kimball! I said, Dinner in a Pumpkin. It's dinner cooked inside a pumpkin."
Kimball: "I just feel like you are ignoring me. I want to know what it is called."
Me: "I think you must be ignoring me. It is called din-ner in a pump-kin."
Kimball: "Mom, I am saying that I want to know what the dinner is called in a pumpkin." 
Me: (after wiping egg off my face and feeling sheepish for not listening and actually hearing what it was that he was really asking) "Sorry Kimball. It's yummy rice and meat and sauce and stuff." 
He was satisfied.

McKay has (until his haircut on Saturday), been sporting a new 'do. He told me one day that he thought Kimball looked good but, he "didn't look any good." I think he is a handsome little devil and told him so. The next morning he told me he wanted his hair fixed different. I obliged, and if it makes him feel more confident, why not???  I try to compliment him often and tell him how handsome I think he is or how much I like the outfit he picked out. I had NO idea whatsoever that I would be dealing with this particular kind of struggle in self confidence with THREE boys. I have to remind myself to tell him that he looks awesome, or handsome, or great... because when I look at those eyes and that smile- I see BEAUTIFUL! (That, of course, is not manly and if I slip and say it, he is quick to remind me that he CAN'T be beautiful because he is a boy.)

Benson is doing great, and with the release of Toy Story 3, we have had a bit of a break from Harry Potter visiting our house 24/7. I have to say that after almost a year of not being sure as to whether we are being graced with the presence of Harry or Benson, this week or so of sans-Harry has been strange. It's almost like I don't know what to do with myself since I am not constantly drawing scars, searching for wands or fixing glasses! It had become part of my daily routine! Ha! He still loves me to snuggle him at bedtime and wants me to sleep with him. That actually just means that he wants me to lie down next to him and tickle his back. He has also become as much a fan of Lime Ricky's as myself. He is always asking if we can go get one. It's great. It's kind of turned into "our thing."

Eliza is six months old today. Can you believe it? Because, I can't. She was rolling over so good last night. She rolled from her back to her belly and then to her back. She did it over and over and over. We have proof on video! Do you think she would do it today? Not a chance. It's just like a month ago when she rolled from her belly to her back four times in a row and then only once or twice since then. I guess she is content to just be. She is such a little cutie and smiles all the time. She is a good baby and continues to be a constant joy and comfort in our home. Night time is still a struggle, but I keep reminding myself that it goes so fast and to not wish it away. These six months have already flown by. I wish she would stay my baby for longer.