What a week!!!

Darnell finished week 1 of radiation! YAY!!!

Isaiah had his neuro/psych eval yesterday. It was a LONG appointment but he was awesome and cooperated! The Dr was able to get through all the testing they needed to do. Now we will go back for results. Dear God~ please let there be ANSWERS that will lead to help and intervention! 

This week has been amazing. seriously. There aren't and probably never will be enough or the right words to thank everyone that is supporting us and praying for us. Darnell's short term disability is so behind it's not even funny. He's received ONE check since he's been off - his last day was June 18th. Yes there's tons of paper work yada yada yada but really? when he called earlier this week they said oh we are really behind.. well isn't that what your department does?? So they said they mailed out a check, well we still haven't seen one.  

with all that has gone on this week though, I know that all that is in God's hands. As frustrating as it is... I trust God. 

COUPONING!!!!!!!!!!!

I swear it's an addiction. Jeremiah has already said that when he graduates and goes to college he's going to give me a list and have me go shopping for him so that I can get everything super cheap. Then his friend asked me if I'd shop for him too. LOL. If they only knew that so many other couponers are way better at it than I am. But I'm getting there. I got Gillette Shaving cream for $.67 a can at Target.  I am building up a stock pile big enough for our family to live off of and not be constantly in need of deordant or something like that. Then I also am buying things to donate. I bought 10 packages of Tena, pads women use for bladder control issues for less than $5 well prob less than that.. And then that gave me CVS extra care bucks to use in the store. I can donate those pads to Halo, a homeless shelter here in Racine. The group I'm a part of Rockin' Mommas are donating basic needs supplies to Halo so as I've been getting things for us for super cheap, I pick up extra for Halo. With the right coupon and sale, you can get so much for very little. 

I got all of that for $8.69 befor tax & saved $104.90!!

My absolutely awesome coupon binder that I don't leave the house without!

I got $10 CVS Extra Care bucks back that day to use at CVS and paid next to nothing!

God DOES move mountains!!!

Where do I even begin???

a little over 24 hrs ago 2 friends decided to put together a benefit for our family. Can you believe that now a little over a day later, donations have been made, a benefit has been scheduled, friends have come out and offered to help in any way they can. I am simply in awe. Not only of what our friends and family are doing, but of what God is doing. 

I have always had faith, but i will tell you what, this last few years... it's been tested, tried and some days I wanted to give it all up. I have always just said to God " REALLY?!? when in the world did I ever seem like the person that can handle all this?"   COME ON. 
Obviously he sees things I don't. I see what I can't do, what is overwhelming and scary. He sees what HE can do with these seemingly hopeless situations and does his thing. And really, who am I to question God? 
  So no more questioning God. God is showing himself. 
Does that mean the next 7 weeks won't be trying or hard? no. It means my faith is stronger, our family's faith is stronger. 
When you are a parent and a wife and you're watching your children go through things you can do nothing about it's heart breaking. And it's not just watching Haley and Isaiah go through what they do, but Jeremiah and Savannah having to watch their bro & sis hurt and cry and not be able to make it better. Jeremiah used to carry Haley home from the bus stop b/c she would have such bad bladder spasms that she was doubled over in pain. Savannah would run ahead to tell me and then Jeremiah would be carrying Haley. Savannah has ALWAYS been with Haley through it all.. sitting with her in the bathroom when Haley has to cath and it takes forever ( Haley's words)... Haley either grabs Savannah's hand or Savannah grabs hers if Haley is in pain. 
These kids amaze me. Jeremiah goes above and beyond for Isaiah. He puts up with the hard stuff.. and i'm telling you what, it gets hard. But J will take Isaiah to the store or buy him an ice cream cone, those little things that are big things to Isaiah. 
Now with Darnell's diagnosis, surgery, and now the beginning of radiation.... it's a whole new set of circumstances. But God didn't change. The cancer diagnosis doesn't go away. But, God is providing for the things we need and showing that people care and love us and want to help. 

The last 2 months have been a whirlwind. I honestly don't think that will end but I'll tell you, it IS ok. Cancer does suck but God is bigger than it. 

And now I am going to study the couponing FB pages for the freebies :) 

You can click on the links below for info on the benefit and Donation page that has been set up by our friends! 
https://www.facebook.com/events/573609059351576/573652892680526/?notif_t=plan_mall_activity


http://www.gofundme.com/3uclt4

Did the clock stop?

I have been couponing a LOT lately. Getting great deals~ spending very little money to stock up on stuff. It's something that pre-occupies my mind. 

Darnell starts radiation on Thursday. I have so many emotions and mixed feelings about life right now. It totally sucks how you can be going through one of the hardest trials in life, feel so alone but life goes on for everyone else. But you feel.....like life stopped. I feel like life as I knew it, stopped June 18th. When the love of your life, the person you have shared literally half your life with, have children with and simply love undeniably is diagnosed with cancer, you feel like life stopped. 

So while life has gone on for everyone else,  I feel like it stopped. I had a dream and in it I was out somewhere and all of a sudden was upset because someone said it was Halloween. I woke up and thought, that's how it feels. Or will I sort of "wake up" when it's all over? But in the dream I was upset b/c I felt like I had missed summer and fall. 

I have been trying to find resources for families like ours. It's not easy to find. You don't realize until you go through something like this how hard it is.. like all the other "stuff"....How will we pay all our bills? How do cancer patients that go through months of treatment and make it? 
2 of our kids have birthdays in August, we need to get school supplies...you know.. life stuff. 

In spite of all the "needs" we have and anyone has, God has blessed us. The FB group I am blessed to be a part of~
Rockin' Mommas started a meal train and has been bringing meals for our family. Our church did it to for 2 weeks after Darnell had surgery. This is such a blessing. It's nice to not have to worry about preparing or making dinner. I see God's hand in our lives. I just have days of doubt, fear, and insecurity. 
I'm a work in progress... working towards to finding peace when I feel like life is coming apart at the seams. 

Heads up to any friends/family that may read my blog~ if anyone has said to us "if you need anything, seriously  just give me a call"... well you may be getting calls!  We need our family and friends now more than ever. So thank you for being here for us. 

How I feel~ raw and real.

I can't believe how fast the summer is going. I had a dream the other night that it was Halloween and I was all upset b/c that meant winter was coming. 
I've said this before and I'll say it again for I go any further.. since this is my blog, if I sound like i'm complaining or whiny.. stop reading now. This is my outlet. I share b/c I've had a lot of people tell me they appreciate my honesty etc.. for anyone who wants to pick apart what I have to say or tell me how I "should" feel.. leave now. Not trying to be sassy but I am just not in a place that I need anyone's judgement or advice. 
I feel like this is the hardest season we've ever gone through. Which is saying a lot. We've dealt w/ A LOT. Haley has had so many surgeries and bladder exstrophy doesn't go away. It's always at the back of my mind that her having a UTI can pop up at any time. I don't lose sleep over it, but it's there. Isaiah is in a contant state of almost crisis. Right now we are deciding if we should home school him. I am tired of fighting to keep him in a school system that requires me to continue to fight every single year for something they should just do for him. So there's that. I worry about Jeremiah and Savannah having to watch their siblings go through all this and make sure that I am there for them. Cancer. That by FAR has taken life and stress to a whole new level. Seriously. I keep hearing, well at least it's not....blah blah blah.. well guess what? this is what it is for us. SCARY. it's rare, like not quite 6,000 men get diagnosed w/ sarcoma in the US a YEAR. Trying to deal with the fact that my husband is going through cancer treatment is hard. I'm tired of hearing about how worse it could be. I didn't want him to have to deal with this at ALL. I think i need to talk to other wives that go through this.I need to talk to other moms who deal w/ the same issues as Isaiah, I've already talked w/ mom's that have kids that have Bladder Exstrophy. All these conditions and rare things that we juggle. And I'm trying to juggle my emotions from all of it. I already deal w/ depression and anxiety. I know God is here and all that goes with that. I know that as a christian I have to listen to God's truth and not my feelings. But dang.. this crap is overwhelming. 
I hate seeing my family go thru this. 
I can't NOT feel that. The ripple affect of all of it scares me..
I feel like I'm completely failing at being a supportive wife to Darnell right now. I need to be Isaiah's advocate and get him help( which I am working on)..
Yes I need to talk to my counselor. but all of the cirumstances don't change. I know I can't change them, I have to change my attitude. Well when I figure out how to make depression and anxiety and fear go away... I can't fix that. I am working on my attitude. today however.. like I said.. this is where i'm at. 2 of our kids have August birthdays, school starts in the beginning of september.. we have to figure out how to get school clothes and supplies and shoes..those things always work out..maybe just unloading all that runs through my brain on here helps.. i don't know. I just know that I trust God but I am angry. It's ok to be angry with God. He can handle it. I'm angry and sad and I wish I had that freaking happy go lucky-life will get better- attitude. I don't. 
I want to cry. I want that horrible feeling in my stomach to go away. 
so i've gone on long enough. 
in all honesty...I'm overwhelmed, scared and mentally and emotionally exhausted. 

Sarcoma

Darnell had surgery on June 21, 2013. They removed the rest of the cancerous tumor. He had to spend the night.  He has a 7 1/2 inch incision. It goes across his upper thigh/lower buttock.  The Dr took a lot of tissue from that area so that there will clear margins-meaning no cancer cells all around the area. He had to come home w/ a drain. it was so uncomfortable for him. But it was necessary. Otherwise fluid could've built up in that area because there is now a large"cavity" where they took the tissue out. 
The pathology report showed it was stage 1 but Sarcoma is rare. There is a grade, mild, intermediate and high. His was high. So it was a small, super-ficial tumor that didn't spread but is a high grade. He sees the Radiology Oncologist at Froedtert on Wednesday. From the reading I've done ( prob too much) but the facts we need to know from the Sarcoma Center info from Froedtert, a person MUST see a Sarcoma specialist. It's so rare that it's just necessary. I'm very thankful for Froedtert. he could have seen someone here in Racine, but why go here when we can go to the best? 
He's off work for at least 6 weeks. Maybe more depending on the radiation. 
It's been a rough 2 weeks. I feel like it's all not real. 
I am trying to be positive, to look at all the good things. To be honest.. I just can't get past the fact that my husband is dealing with this. It came out of nowhere and blindsided us all. It's so much to take in. So keeping a positive attitude is a bit hard when I'm still trying to wrap my head around this.  There are so many unknowns and it just scares the crap out of me. I try so hard to keep my mind on the facts, on what I know to be true and that God hasn't changed. But jeez.. this is probably the hardest thing I've dealt with. And I'm not even the one that is physically dealing with it. I love Darnell so much. He's my best friend. We've grown up together..and we're going to grow old together. 
Tonight, I'm just scared. For him, our kids, myself. Cancer is scary. 
I'm trying to find resources for families dealing with this... help w/ insurance when it all gets expensive.. short term disability is an extremely small amount of money to live on. so I have to research.. find out whats out there for families dealing w/ cancer. I also am couponing like crazy.. trying to stock up and get the very most out of our money as possible. I thought about trying to get a job.. but seriously.. If he's going through radiation treatments and who knows what that looks like or how long that will be.. and hello... we still have 4 children that need their mom. So.. couponing, saving money, selling stuff on rummage sale sites on Facebook.. whatever. I'll do what I can. 
I am glad he sees the oncologlist on Wednesday so we'll get some answers but on the other hand, i'm scared to death. 
I know all the " Trust God, be patient, be positive, ...stuff" All of that is good.  However, right now, facing this, I feel freaking scared. I am sad for my husband, my kids, myself.   No one can tell you how to feel. You have a right to how you feel. I tell my kids that all the time. Like, if you are angry.. ok, you can be angry. Who am I to tell you how to feel or not to feel? What you do with those feelings is what matters. I will take these feelings and lay them at God's feet. That doesn't mean I don't hate this, that I hate feeling like this and that I'm just having a hard time. I'm doing the best I can. 

This month is Sarcoma Awarness Month. another rare condition that we are now aware of. God.. I am eager to know why? I guess we all feel that way. But I'm kinda looking at it like, my daughter was born with bladder exstrohpy.. she'll deal with it her whole life. My son has psychological issues that just get worse and we can't figure it out.. I deal w/ depression and have Chiari and it causes horrid headaches but can't be treated b/c it's not severe enough. Now my husband had cancer or has cancer, I don't know what to say. Will be in cancer treatment. And my 2 kids that don't have issues have to sit back and try and deal with all this. So, yeah.. I'm pretty pissed off. I'm tired of watching my family suffer. So yes I am trusting God b/c there is just nothing else I can do. 

There are NO words.....

The word you NEVER EVER want to hear completely turned our world upside down in the last 5 days. On June 10th ( which just happens to be my birthday) Darnell had what his primary Dr said he was 99% sure was just a cyst. He had it for years but had recently ( like the last 9mo or so ) gotten bigger. So when his primary Dr saw him he referred him to a general surgeon to have it removed. He removed it in the office on June 10. A week later, June 17th Darnell went to get the stitches out and the Dr said they had to send out the tissue for further testing. WHAT? Red flag. The next day, June 18th I get a phone call from Dr. Stoltenberg himself telling me that what we thought was a cyst was in reality a tumor.. and it was a rare form of cancer called soft tissue sarcoma. I was DRIVING when he tells me this. 
I felt like someone punched me square in my chest. Darnell was at work. They wanted him to make an appt to get a CT scan ASAP to make sure there weren't any other tumors in his chest, abdomen or pelvis. I had to call him and tell him. I regret having to tell him over the phone. Who wants to get that news over the phone? But if he needed to contact the Dr's office etc.. how could I not tell him? And when he'd call me, b/c he always calls me on a break, how would I explain why I was totally losing it? So I ended up talking to the nurse, the Dr again and scheduling everything. 
When I picked him up from work he had to go fill out union stuff, short term disability ( which I have no idea how anyone can survive on what they pay us) The next day, June 19 he had the CT scan and blood work and more paper work. The Dr called later that day to say he didn't see any other tumors, just a spot on his rib. He believes it's a calisfication ( don't know how to spell tonight)... Friday June 21st he went in and they removed the rest of the tumor and a good margin of tissue surrounding the area. They went down to the muscle, but didn't have to take any muscle. The cancer did not spread to the lymph nodes. The site where the tumor is- well right in his upper thigh or more like his booty. They sent samples of the tissues to Mayo clinic to make sure nothing comes back abnormal. His bloodwork was all normal. 
With a sarcoma, it is rare. It's HIGHLY recommended that you see a oncologist that specializes in sarcomas. So he came home today. He's sore, he has a drain so that the fluid doesn't build up and cause an infection.. 
He's off work for 3-4 weeks at least. In that time he'll see an oncologist. We want to go straight to Froedtert. There's a Dr there that does specialize in sarcomas. We met a family from church that actually just went through this. They highly recommend this Dr. At this point, Darnell's cancerous tumor is gone, blood work looks good etc. However, for something that originally was said to be 99% not cancer.. we aren't going to play around.  He's had cancer in his body.  Our world changed DRASTICALLY so fast I felt like I was in someone else's world. 
And I'm not the one dealing with the physical reality of having cancer. I am his wife, I feel like my life, the love of my life and everything I have ever known since I was 17 years old when I met him was all of a sudden being threatened. 
We had to tell our kids.. we SOOO wanted to keep the "C" word out of it.. but it just wasn't going to roll out that way. How can you reassure you children when really, you don't have answers yourself? I felt like life was falling apart BEFORE June 18th... 
Well I guess I didn't know what that really felt like until I got that phone call. 
With all this being said, I know God is in control. As freakin scary as all this is.. scarier than anything I've ever faced. We have been overwhelmed with prayers and support from our families and friends. Darnell's facing kind of rough recover b/c of where the incision is. He's worried about being off work, paying the bills, putting gas in the van all those normal life things that go on even if you have cancer or had cancer or whatever. I have faith. In spite of it all, I do. I mean seriously..I feel like God is working overtime trying to get my attention. So he's got it.
This is just my view point. I feel like this week was surreal, like I couldn't catch my breath. I can't do life without him. Now, every bump, any kind of cyst like anything that he might have needs to be checked. I feel like this will follow him forever. Well it will. Maybe because everything happened so fast, and we are still kind of going, wait, " Darnell had cancer, they took it out.. but they still need to do a bunch of stuff to make sure it's not anywhere else... blah blah blah..." Maybe when we can catch our breath I'll not feel so scared of all this. Right now, I can say NO I won't ever be ok with this. But I know that God can give us peace that passes all understanding. 
Even as I type this, I can't believe I am typing it. a rare form of cancer. we must be a target for rare things, bladder exstrophy, I have this chiari ( where a bit of my brain pushes up against my skull and they say it's not bad enough to require surgery and shouldn't cause symptoms, yet I have them) and everything we deal with with Isaiah. I don't know WHY we got picked to be the poster family for the worlds most rare things.. things that have ridiculous odds of happening. I'll be asking God the minute I get the chance once I am in heaven. 
I am going to finally sleep. Darnell's sleeping downstairs on the couch b/c he can't go up and down stairs and he's terribly uncomfortable. But he's home. He's ok. I don't know what the future holds. But a week ago, before all this, I didn't know it then either. I guess now I just got a HUGE dose of what can happen, what does happen. I need to make the choice to be in the moment. sounds new-agey or whatever but it makes sense. 
I'm exhausted. I'm drained. I try not to worry about how our bills will get paid... but Darnell's alive. he's ok. God just has to help me handle the rest. I'm good at taking care of him. I was good at taking care of Haley after all of her surgeries and all the things she went through. So I know I am good at taking care of my husband. I'm not very confident about things, but I am confident about this. So.. there you have it. My point of view. how i have experienced this week. good night. 

heartbroken.

I know they say "this too shall pass" 
I've been hearing that and saying that for years. I think it's crap. Today I do anyways. 
We have hit some huge issues w/ Isaiah again.. 
daily life is hard. Some days it feels impossible. NOTHING is working with him. He is going through a med change right now. He goes in August for a full neuropsych evaluation. 
This is breaking my heart. Seeing my boy go through all this is the worst part. I'm prob going to sound like I'm having a huge pity party today.. well so be it. I've watched my daughter endure physical pain that broke my heart.. and know that it's not going to go away.. I can't fix it. Now with Isaiah.. I'm watching him go through this mental/psychological meltdown after meltdown. He is starting to get physical again. 
I'm drained. I have NOTHING left to give anyone. Which is horrible, I mean seriously horrible because I am have 4 children, a husband.. I need to keep it together. I can't. I really and truly can't. 
Everything else-life stuff is feeling like it weighs a million pounds. a car we need to run isn't running.. one of my meds is going to cost almost $200 b/c I have to get a 3 month supply through our insurance. I don't have it. I'm selling scarves and trying to sell things on the FB garage sales to make extra money to put towards just a medication. My girls need summer clothes.. 
I'm seeing a counselor( THANK GOD) but right now, today.. I got nothing. I pray and I cry and do it all over. I realize I am prob supposed to accept the hand we are dealt.. we've been dealing with this for long enough.. but this is me. This is how I am. emotional. overwhelmed. and scared.