Saturday, October 20, 2012

Slow and steady wins the race.

We had a really great week last week with Cashy. It was so great to see that his personality and spunk are still there and It was so amazing to see him doing so well on his week break off the oil.
Cashy went hot tubbin, he rode his bike a couple times for a few minutes, he went to the store (walmart, good food store, albies) numerous times with mike and I, he played play dough with a buddy, he colored, he ate food here and there (he hasn't done that in over a month), he even went to the matisyahu concert with us all for twenty minutes or so before he was ready to go to grandmas (that was his idea, we were on our way to drop him off at grandmas and he kept saying "I go, i go" so of course we took him, anything for our sweet brave boy), he played with his sissy and big bro for a bit here and there and he even lounged in dads work chair downstairs for a few hours and watch movies. He was talkative, sweet and goofy. It was great, amazing, wonderful all in one and really gave us hope knowing he is doing so well almost three months (4 months since he started getting sick) after being diagnosed for the third time with this evil PNET brain tumor.
Over a month ago when his eyes started moving inwards and twitching side to side we really were discouraged, but knew deep down that these are the side effects we tell other parents that have their children on oil, their eyes will move weird. Granted cashys tumor is on his optic nerve, yes they're going to move weird, but the oil relaxes all your muscles and cashys eye muscles are extremely weak from surgery and radiation. But since taking him off the DCA (which major side effect of dca are weakened muscles) his eyes are evening out and the rapid eye movement and crossing are almost completely gone, were really excited and thrilled. Seeing your babies eyes cross and move uncontrollably is so upsetting and worrisome, I'm really relieved its subsiding. Actually I'm freaking over the moon excited!
When he was diagnosed for the third time, the tumor measured 2.7cm. He had been sick for over a month. The end of may he was cancer free, third week of June he was vomiting and acting sick again, after many tests and pokes and prauds after constantly complaint of tummy pain, we opted for a MRI early. So it was 2.7cm July 27th, this means it grew that much in less than two months. Theoretically his tumor should now be around 7cm if its growing at that rate. When he was diagnosed the first time in may 2010, it was 4.5cm and he was blind and his eyes were buldging out of his skull. So with this it tells me that were doing something good right now, he's holding his ground and I know in my heart this tumor is shrinking. This is a brain tumor, it's alot more complex than breast or prostate cAncer, we have to break that blood brain barrier, so were hitting him very hard with the oil, this is his chemotherapy basically and I have to be patient and know its going to take time to completely heal our baby.
Some days are harder than others, the first night back on the oil after the week break was miserable for ALL of us. He was up all night every hour wanting water, whining, refusing to let us hook up his feeding tube, his new thing is he says "in a bit", well it's in a bit to everything now. He doesn't understand that twenty minutes later is "a bit", he puts up the biggest fight with that thing. Seeing two grown adults trying to hold down a tiny 22 lb 4 year old, well it'd be one for you tube, this kid has the strength of the hulk! Most nights he refuses to even let us hook it up, its a constant fight, he basically will rip it out of his tummy. Not good. So we're hitting him hard with the vitamixer all day long. It's actually better for him, its real food with substance, the tube feeding makes him have really really loose stools and he often throws it up around 0530. He doesn't throw up the vitamix blends ever and for the first time since we started this battle 2 1/2 years who he's actually having formed stools. tMi I know, but you don't know as parents how amazing it is for him to actually have a hard poop, lol, this never happens. Enough of the poop talk. :)
One of these days when he's grown and reads all this he's gonna kill me , haha.
Colty and mike took off hunting again yesterday. Today is Opening day of rifle season. Cheers to a big bull tomorrow am! Before they left yesterday colty was cleaning up the camper and he came running in screaming and bleeding everywhere. He had sliced his finger on a piece of broken glass. It was really bleeding and I'm trying to put pressure on it to get it to stop, he's screaming and all of a sudden I got all woozy, light headed and pale..... How weird seriously, I'm a nurse and I work in OB, I see bloody vaginas daily and sometimes blood clots the size of your fist (sorry for the graphic image) and have seen more than you can imagine with Cashy, a little blood from my healthy child I get all dizzy and feel like I'm gonna faint, how odd. I felt like a whimp. I guess when it's your healthy child you never have to worry about being sick or hurt , it effects ya differently. Strange. so i get it to stop bleeding and I put some liquid steri strip on it and bandaged it up all nice ( have an amazing medical kit supply from cashys unused supplies from back in the broviac days), only after having to sit down a few times, I'm not proud of this weakness I showed, lol.
Catherine joy is just such a blessing, she is literally the best baby, she sleeps so well, she eats great, she always has a smile for you. She's just a little angel brought to us. I love her so much.
Sorry didn't finish my post last night, Cashy was ready for bed and wouldn't let me leave his side or let go of his hand. :)
He's been a feisty booger today. Sleepy and whiney. He's been stuffy in his nose for 5 or 6 days now. We think its Just a cold. We've all had a cold bug for the past couple weeks. But then we start over analyzing and thinking its the tumor. His pediatrician told us that the radiologist said in his last scan the tumor is literally millimeters away from his sinus bone and if it grows he will have trouble breathing. So now whenever he's stuffy we get all worked up and second guess everything. Ugh.
The boys got home and Colten requested I make pasty pies for dinner (yes with meat! But I used bison, we never eat meat so once in a while its a special treat, even most the time we regret it later) And I baked acorn squash. It was very yummy and they both scarfed it down like hungry orphans. Lol.
Everyone have a nice week and thanks for all the prayers and well wishes for Cashy! They're working!' TTFN!
Oh and everyone who's asking when his next scan is; we'll were not sure, we haven't decided!

Wednesday, October 10, 2012

Live life to its fullest everyday! No regrets!

To start off I want to clarify a few things from my last blog post. As most of you read I had commented on a dear friend who had posted about her troubles with her 3 year old son. I want everyone to know I wasn't trying to hurt Her by what I said, I was only just trying to get my point across that I would give anything for Cashy to be a feisty wild rambunctious 4 year old and that I am envious of her healthy boy, and that what one person wants is another persons nightmare. I apologized many times and am truly sorry for hurting her feelings. I didn't know the depth of the situation and spoke ahead of myself. So anyone who wrote Nasty messages to my friend, I'd really appreciate if you apologize for your rude and hateful words. It not only hurt my dear friend it hurt me that people who say they care for our family and son could be so hurtful towards a perfect stranger. That wasn't what I was going for and I'm ashamed about what happened and how it all went in the total opposite direction I was aiming for.

On a better note, we have taken a small break on giving Cashy the cannabis oil for 6 days to reactivate and clear out Cashys endocannabinoid receptors (everyone has a endocannabinoid system in their body, it is perhaps the most important physiologic system involved in establishing and maintaining human health. Endocannabinoids and their receptors are found throughout the body: in the brain, organs, connective tissue, glands and immune cells. In each tissue the cannabinoid system performs different tasks but the goal is always the same; homeostasis, the maintenance of a stable internal environment despite fluctuations in external environments., google it for more information, it's fascinating really.). So after being on the oil heavily for over two months, we are giving his system a break so these endocannabinoid receptors can continue to do their job accurately, they need to be reactivated if you get what I'm saying. So today was the third day of being off the oil. Now remember you can not withdrawl from cannabis as it is oil based and stays in your system for up to 30 days, so even though we took him off cold turkey he still has cannabis in his system slowly wearing off but not letting his system go haywire from cutting it out completely. Another reason it is such a great pain reliever, vs heavy narcotics. Not to mention all the other benefits it hold, it's a neuroprotectant, antioxidant, antibacterial and it says in the government patent on cannabis that it can prevent organ failure during septic shock (exactly what cash went through fall of 2010, while on life support). So not only are we fighting his cancer with this miracle drug, we are protecting him from all sorts of other conditions that could arise from the treatments we put him through the past two and half years.

So back to what I was saying. We are on his third day off the oil and are really excited to say that Cashy had a awesome day today. Although he is still tired, and a little crabby, he is still all there and was up being more active, talkative, and alive than he has been in the last two months. Last night he insisted on sleeping in his car bed, which he's never ever slept in it, he only stayed in it a little bit as he wanted me to sleep in it with him, well after a half hour of being crammed in a small toddler bed I convinced him to come back to our bed (the family bed, thank god its a king size, lol).
This morning around 630 am Cashy was laying in bed with us and I was listening to him sing and hum half awake. It was so dang cute, he's was just laying there humming and singing away. The sweetest sound. Sissy slept in her crib from 11-730 last night! Amazing, besides my boobs were going to explode and cash was up almost every hour being restless and wanting water. So even though baby girl slept all night, cash still kept us up all night. Oh well! Like I said before, I function quite well on minimal hours of sleep!
while I went and worked out this am, and sissy went to the Y daycare, mike took Cashy to Colten's 2nd grade class and said hi to colty and all his classmates. I wish I could of been there, I bet colty felt like a very proud big brother! Then they went and ran errands and got coffee. A couple hours later they ran to Walmart for some stuff only after Cashy was up and outside riding his bike for a few minutes!! Hey a few minutes is awesome after seeing him lying in bed for two months straight! He's been such a cuddle bug lately, he insists one of us hold his hand while we sleep, and he will snuggle up on me and say "my momma," it melts my heart. I tell him I love him almost every hour, lol, he says back "wuv you". So Needless to say we are some very happy parents to see our boy up and moving even if it is for only a few minutes! I'll take it! Sometimes (more than not) Cashy is so controlling on who does what, (i would think this is frlm having little control these past two years, that now at home he gets to control what goes on) that often he has sissy or brother give him his meds, well monday he needed his diaper changed and he refused, absolutely refused to let me change his diaper, he insisted that the dog Irey change his diaper, oh man was that interesting. I let the dog up on the bed (which I hate dogs on my bed) and I took her paws and she assisted me in changing his diaper, I swear if there was a camera in the room, it would have been quite the shit show! Lol. Oh man the things we do for Cashy! Hilarious really! Cashy had a big boy haircut yesterday by miss Ashly, he was pretty cooperative, a little wiggly but we got it done! Thanks ash! He looks so handsome!

Grandma Vickie took colty to pick out a Halloween costume today, he picked a creepy jester looking costume. Scary looking if you ask me! We still need to get Cashy and Sissy one too.

So back at work it is for me. Three twelve hour shifts a week, ugh. It's exhausting. I called in sick on Saturday after I wasn't going to because everything seemed altight, then Around 6 he was acting miserable and screaming and crying for me so I called off, not only ten minutes later I had a call from my boss (which she's not even at work on a Saturday) saying that I have to come in to work and 6 was to late to call in. When I called I said that Cashy wasn't doing good and I needed to be home. So when my boss called I was a little blown away that she was like You MUST come in and there is nobody to replace you. She even said, "can't your mom or mile watch him". Which yes mike was home but that wasn't the problem, I felt guilty leaving him when he felt so icky and was screaming for me to hold him. So I ended up going in to work, after crying the whole way there. Some people Just don't understand Just how hard it is to leave your baby boy when he's so sick and wanting you to hold him. Guess you don't know till your in a similar situation.
It's so crazy and overwhelming to look at "before" pictures of our family, well especially Cashy. To see how we were before cancer wrecked havoc on our lives. The picture below of Cashy was taken only a few weeks before we had found out Cashy had cancer. He was so whole, full of thick beautiful dark hair, and life and not a care in the world. It's easy to say I'd love to go back to this time, where we hardly knew of the world out there known as pediatric cancer, but we wouldn't be the family or people we are today if we didn't experience this journey we are on. We would of just continued living in a world oblivious to the pain and sorrow that these children and families face everyday when living with the beast called cancer. I'd like to think I'm a better person now, having experienced what we've experienced as young parents has given us a whole new meaning to life and love and as easy as it would be to say I wish we never did have to know what this side of life is like, I'm glad we've been given the eye opener to cherish life and to love with such compassion and heart that now I know how precious life is, and what a gift every breath we take is.
With that said, everyone hold your babies tight and if you don't have babies yet, hug your mom or your dad or your grandparents or your brothers or sisters, because you never know what will happen tomorrow.

Thursday, October 4, 2012

Every day is beautiful!

Well it's now been over two months since we found out Cashys cancer has returned and 3 months since he started showing symptoms again. Each and every day with our buddy is a challenge but a beautiful blessing at that.
Not much has changed in the last week since the last update although we have changed some things in his daily routine and his eyes are looking better than they were when he was on the DCA.
Since removing cash from the DCA he has shown a slight improvement, he's been awake more for longer times and his rapid eye movements have lessened. His vomiting is still present but less often and we haven't fully figured out when it's gonna happen, it's totally random, but mostly in an when he first wakes, (which is one symptom of a brain tumor, morning vomiting). He threw up this am, but once again I was able to pull out a playdough bucket that was near and catch it all, lol (our poor bed, I swear I'm changing sheets every other day, sometimes twice in twenty four hours). Cash has been giving mike and I an extremely hard time when it comes to hooking up his feeding tube and pump at night on continuous feeds. He fights it so hard and if literally takes us grown adults to hold him down to hook it up, then it's the battle of keeping it in because he's smart and knows how to unlock it and unhook it. Last night he was pulling on his gtube so hard that it was almost pulled out of his tummy completely. And if anyone knows how gtubes work there is a balloon that is blown up after being inserted thy holds it in place, he almost had the whole thing out. We literally had to hold him down and put a small T-shirt over his belly and tape it around so it covered it so he couldn't pull it, that lasted only ten minutes and it was off, finally he gave up and went to sleep. Ugh. That fiasco took nearly an hour but he stayed hooked all night.
We purchased a vitamix blender, (that thing is effin awesome!) so now during the day we blend up every meal that we cook and I add a bunch of high calorie high fat items, to it and then we Just squirt 60cc of the mix in him at once, about every hour he'd gets full syringe along with his fresh veggie juice. This am I'm mixed up scrambled eggs, toast, hemp protein powder, hemp oil, flax oil, yougurt and almond milk, mixed it up and pumped him full of it! You could literally grind up a whole steak in that thing if you wanted, we don't eat meat, but you could basically grind anything up you want. It's so easy and since he's not eating a single morsel it's the best way to get wholesome food in him, then at night he gets the tube feedings on continuous. He's maintaining his weight, he hasn't lost any, even though he looks like a little skeleton.
This morning about 4 am when the boys got up to go hunting (yes hunting again), Cashy woke up and was in the best mood, laughing and giggling. I love to hear his laugh, it vibrates through my whole body and Just resonates good vibes! I love it. His laughter is becoming less and less so when we hear it, it's just amazing and makes you feel so good.
Lately he loves for me to lay with him and hold his hand. I love this, his little hand in mine, it feels so right. I wish I never had to let it go.
I know everyone struggles day to say with their own lives, children, bills, work, school, etc. I know how the simplest of things can seem important, and sometimes you overlook the important things by worrying about the little things. Well when you have a child sick with a debilitating disease like cancer, you tend to push away those little things and only worry about the major things. With that said, Ive been struggling with a friends post on Facebook last week. I Wong name names but if you read this youll know who you are, and know that I love you girl......but she posted this long post about how her 3 1/2 year old is having major issues with obeying and listening and that he is Totally out of control and won't listen to her for nothing if she sends him to his room he's jumping off dressers into his bed, etc. She also said that she went and saw her doctor so she could get medication so she can tolerate even being around her son?!!??.....seriously Hun, do you know what I would GIVE to have Cashy acting like a little asshole and running around jumping off dressers and yelling and screaming!! To need medication to numb your reality of your happy luff and your healthy kid, well it's appalling. And I'm hurt that you would even go to that extent, to medicate with prescriptions. There's much better ways to cope! Believe me! Sorry if this offends you hun, but it's been bothering me. Some advice for you as well, look into what your feeding him, sometimes certain foods can cause kids to act out, there's dyes in processed foods that can literally alter behaviors. Start looking there. But get off the meds. Enjoy your rowdy wild boy, you never know what could happen tomorrow or the next. Tomorrow is never promised for anyone. when Colten was three he was the same way, we actually got banned from ever playing with a good friends little daughter who was 9 months older than colty because he was to wild. It's just a 3 year old boy thing, trust me.
Mike and I were able to attend the pearl jam concert on Sunday! We didn't have tickets and either did our friends so we decided to try and find a scalper, by the grace of god we did but all four seats were in diffrent sections, lol...we all managed to squeeze into a spot! It was so much fun and was nice to get away for a few hours and Just jam to some music! Thanks Brooke and Casey for coming with us!

So we're just still going day to day, hoping and praying for our miracle again. I do know one thing, if it wasn't for the oil Cashy is on, he wouldnt be here, he wouldn't be comfortable like he is, and most likely he'd Be on a morphine drip trying to control his pain, but he's not! He's comfortable, happy for the most part and is still enjoying going to Walmart for a quick grab of some playdough, markers or cars. Lately it's a big cars movie kick again. He actually sat up and watched the whole movie cars yesterday. Usually it hurts his eyes to watch tv very long but he did it! I'm pretty sure were on the right track to killing this tumor. Three months since this tumor has returned, basically it should be huge by now, and I know it isn't! we're gonna fix you Cashy! Just keep being that super Cashy that we know and soon it will all be a bad nightmare! Brain tumors are complicated and breaking that blood brain Barrier is hard to do, so with that said we can't expect this tumor to be gone over night, it's a process and mild and I are pretty much on our own protocol for this one. We're changing the world guys! We are! Just you all wait and see, soon no child will have to suffer this way again!
Thanks for the pizza last night Tammy! Your such a sweet lady! Thanks again! And thank you everyone for the continued love and support! We love you all!