And Now He's Five!

He went from this(a week old):


To this(age 5):


All that in just 5 short years. He is my second born, Av.

He is sweet, kind, and lazy. Its an interesting combination but it works for him. He who is on his own timeline and always has been.
He rolled over, both directions, at 2 weeks and he held his head up with no real wobble at a week(see first pic). He didnt sit up til 9 months. He didnt walk til after he was a year and he refused to give up his bottle, even for a sippy cup, til 18 months when he decided he was done and drank straight from a cup from that point on. He wouldnt talk except in his own sweet language til after he was 2, not even a mama or dada, although he completely understood what we said or what we asked of him. He was just satisfied talking his own talk. He still isnt potty trained and as horrid as that is(and trust me I hate it) there isnt anything physically wrong with him, he's just lazy and wont do it til he's darn good and ready...like he has all his life.

He is also the most kind and giving person you'll meet. He sees you upset and he does what he can to bring the smile or laugh back to your face. One time, when he was a bit over 2, his big brother got in trouble and didnt get cookies for snack. He was crying and upset so Av went over and handed him one of his 2 cookies just so his big brother would stop crying and feeling sad. That is just who Av is.

He's a charmer, could charm a snake back into the ground with a flash of his devilishly sweet smile. Cant ever stay mad at him even if you want to.

Its just who he is and Im proud to be his mommy and proud he is part of our family...making our day brighter and being a good brother(most days)to his big and little brothers.

Happy #5 my AveryDoodle...glad it was a good one!

Cart Before Horse, Zones, and Other Such Goings On

So since my last update a few things have changed.

Dans about ready to end chemo it looks like. Everytime they give him the drugs his platelet count(as well as the white and red cell count)go down. And its taking longer and longer for it to recover, used to take a week and now takes like 3 weeks to get back up to a decent level. Not even a great level just a decent one.

So at our last visit(nearly 3 weeks ago)we were told he'd probably end up on a chemo pill. Near as I can find its really a maintenance pill to prolong and hold the cancer steady for as long as possible. So its kind of the end of the road treatment-wise. Dans already in that zone while Im waiting to see if the doctor, for sure, is gonna do this. Dan thinks Im not accepting that this is the end and now its just wait for the end to come be it a few months or years, etc.

Ive accepted that the end will come but I dont like saying things are gonna happen when the doctors change their mind everytime we go in. So Id rather wait til the 8th(next appt)and see what he says or does then go from there. To me its like putting the cart before the horse but Dans already in the zone and you cant explain yourself once he's there.

Boys are doing alright, they really dont get any of this even tho they know daddy is very sick. Dan tried to explain it to our oldest(he's 7) and thinks he got it but I dont think so. It doesnt really matter, these are subjects that are mentioned and talked about quite often and we dont hide the kids in their room while they are being discussed so they are bound to catch on and we'll talk to them more specifically and answer any of their questions as they come up.

Dan is getting new scans done this morning so we'll know exactly where the cancer is and all that jazz by the time we get to the doctors next week too. He's hurting so much in the abdomen we are both concerned its spreading since chemo has been so screwy and non-existent(basically).

Not much else really going on. Trying to save up to move in September but Im still holding my breath on that one too.

Kids are being ok. They get bored and they are just super active all the time always wanting to do, do, and do some more. I feel bad that the construction and other things hinder their outside activity. We dont really have a backyard as this is an apartment but we could do more walking and such if it werent for construction all over the place making it unsafe.

Guess thats about it for now. Think I caught everyone up to date!

ttfn...

Hello Again

I havent updated in a while and I will do that in the next couple of days.

I just wanted to let those know, who are reading this, that Im going to be talking about more than just the cancer journey. My life is a myriad of things and Ive decided I need to let it out...the good and bad. So Im going to blog about it.

Im also gonna try and be one of those cool bloggers who adds recipes or thoughts of the day,etc. Whatever speaks to me that day.

So, with that expect a few changes(including a new title) and away we go...

Last Appt with Twitty Doctor

So on the 30th we had our last appointment with the twitty doctor. He just kept yapping about numbers being the same(platelet count that is) and Dan not really having anything so he'll do a couple more chemo sessions and then let it go for 3 mths or so and then at that point do more scans to see if there is a change,etc.

Im SOOOOOOOOOOOO glad we dont have to deal with him again. Even if the new doctor says the same things if he can at least say it in a kind and non-freak out on ya way that will be helpful and better. Tired of a doctor who treats us like morons and keeps changing his thoughts every other sentance. I want a consistant, caring doctor and I dont think its too much to ask for and neither does Dan.

So Dan did get chemo, first time in nearly 6 wks, and its killing him. He was so tired(typical) yesterday after we got home and then was having chest pains(not cool) and today he's spent all day in our room cuz he's felt flu-like and feverish(can be typical reaction to chemo). Most of this is pretty typical especially since he's not had it in so long. Poor guy, wish I could take some of the pain and ick away even if only for a short while.

So thats where we are at. Next Wednesday is a new doctor and hopefully the start of a new "day" where we can understand the doctor and he understand us and we can work together to get this tended to.

I realize Dan probably wont survive this but that doesnt mean we give up or stay with a doctor who is a twit. Nope we will go down fighting!

*and I want to say a special thank you to those who have read this and commented and those who have supported us in other ways. I appreciate knowing we are thought about and loved and wished well*

Update 3/21/11

Dan had new scans done on the 7th/8th of this month. Here is what the doctor said about them(even tho we had the results ourselves days before we saw him).

Dr says his spleen is enlarged but they'll watch it, no biggie(uhhh ya it is). Dr said the 7mm mention of the tumor size isnt right. He says the tumor is really miniscule and basically Dan is in remission but they'll keep working at it. Dr now says Dan isnt necessarily gonna die but he cant predict the future noone can(well duh!) but at the same time he says Dans got a 9-13 mth life expectancy WITH treatment(even tho at the start of this all he told Dan that number was 22-24 mths). The dr just kept changing his tune at every corner.

The report says his liver tumor is stable...no shrinkage nor growth. Dr says that means its too small and more like remission. Yet when I said "so its not grown nor shrunk that means remission?" he jumped my ass(literally jumped down my throat)and went off about scan guys not reading them right and that he didnt say it was in remission just stable. So I said again "so the non growth/non shrink is a good thing and its stable so we can proceed" he jumped on me again about misunderstanding him.

The guy is an ass and Im so glad we get a new dr next month!! He spent an hour with us arguing but at every turn he changed his tune. Anything to make himself look smart and everyone else look dumb.

Dans got fatty deposits in his liver but, according to the dr, everyone does so its no big deal. We could go without chemo or we could do it if Dan wants.

So more time without chemo(that makes it a month w/o). We go back on the 30th.

Im so drained from that doctors room of gloom and doom(seriously between the two of them going at it thats what the air in the room felt like)...I cant even begin to tell you how exhausted I feel and angry and sad and how ANGRY beyond words Dan is.

Here is what I know for sure....

*Dans tumor, according to scans, is still visible and there. NOT miniscule in size.

*The tumor is stable...no growth and no shrinkage. Thats good and bad.

*Dans spleen has "significantly" enlarged since the scans in December. Nothing but watching can be done but he must be a bit more careful since you cant do anything about it really.

*There are fatty tissues in the liver that werent there in the December scan.

*Im freakin' exhausted in every way possible.



Thats the update...for now.

An Update...Some Review, Some Not

Dans been in and out of the hospital since November(4 or 5 times total and more will happen). His blood count and platelet count just wont cooperate. Everytime he does chemo it kills his numbers. That is to be expected but not to the degree that it makes it impossible for him to do treatment the next week. So he's been having a lot of "off" weeks which isnt good for the destruction of the cancer.




He'll have new scans done next month to see the tumors' progress. We are concerned cuz of new developments with his liver pushing out a bit and a new, sore lump under his jaw in the lymph node area.



Im still giving him the shot to force his bone marrow to produce white cells, almost every day. He is also now getting a shot done every other week at the drs(during his chemo time)to force the marrow to produce red blood cells.



His doctor is a twit. He said on Wednesday that their goal, since Dan is in stage 4, is to prolong his life with a decent quality to living, and keep the tumors down. No talk of actually KILLING/DESTROYING the stuff just basically maintaining and prolonging. Utterly ridiculous!!!!!!!



I cant wait to move cuz hopefully we'll find doctors who give out hope and positiveness.



I also learned Dan was giving life expectancy numbers when this all started, he just never told me. With treatment(since he chose that route)he was given 22-24 months.



That was good to hear but deflated me a bit.

Still gonna go on fighting and keeping the positive and hope alive. Not gonna give up...neither of us are.



But its been very, very hard. And we have an additional person in the house now so its been even more stressful(on me at least, Dan loves it). So thats been an adjustment.

My emotions are all over the place over everything anymore.



But thats really where we are at. Fighting, dealing with Dans body not cooperating and a doctor who could really care less and lifes daily, regular struggles.

BuBye 2010

I cant say Ill miss ya, cuz I wont. I never miss the years...they go too quickly to miss for me anymore.

Let me tell you what 2010 meant to me...

End of my normal and reassurance that kindness does exist, thats what it meant to me.

In the beginning of the year we struggled financially but held our own as Dan tried to find work(as did I)with no results.
Then we lost income and on the verge of losing our home we found out about the cancer. Then we lost the house cuz we couldnt afford rent anymore.

I found out that my online friends are amazing and that I had friends I didnt even know I had and was blessed to have each and every one of them.

Then it was living hither and thither until September when we finally got SSI turned in and approved and into a state and then gov't(HUD) run program that helped us get into a place(2 bdrm apt)to live for the next year. Through this HUD program we have been blessed beyond words by strangers who have given of themselves and their time and money to make my boys happy(and in turn me and Dan). The blessings are too much to repay but they will be paid forward as we begin giving to others as best we can cuz we love doing it and havent been able to this past year but we will in 2011 come hell or high water!

Dan started chemo and his health went into the toilet. He's been in the hospital 3 times since November to have blood and plasma transfusions. His personality has shifted into PMSville(never know what you are gonna get). He's tired ALL the time and sleeps most of every day. He's hurting and you can hear it while he sleeps cuz of the moans and groans and wimpers and crys. He now has fire burning in both legs and numbness on the surface of both legs. This is either due to his already wrecked and needing surgery back or the new med he's on for keeping his red blood cells up.

So, he could end up in a wheelchair before too long if this keeps up. He doesnt remember for more than 5 mins a lot of the time and sometimes he isnt sure of the day or where he is, etc. Sometimes he seems to talk about things I havent a clue about or what he means,etc yet he thinks it pertains to the current conversation.

This is not easy. I miss our old normal but life has slowly shifted to the new normal and although its hard and heart breaking we will survive and we will get through all of this better and stronger.

Now onto 2011....
This year will be the year we beat his cancer! It will be the year we move out of Vegas and up to Utah to be in a calm place near friends and relatives. It is the year of spiritual strengthening.

So there is the update. Same ole, same ole. Tuesday he gets his two chemo meds and will be very tired for several days afterwards.

This year we reunited Dan with his old friend and they are enjoying each others company and I hope that remains cuz they both could use a friend right now. This is the year we say goodbye to Dans brother who lived closest to us because they've decided to cut themselves out of our lives since we cant help them any longer. Good bye, good riddence, and sorry you suck as human beings. I hope you find your way and somehow you find happiness cuz being the selfish twits you are cant give you too much of it....please find it!

The End...