Tuesday, September 6, 2016

September 2016- long over due update

Ok. I knew it was a long time since I blogged, but I had no idea it had been this long!

I don't know how I could stay away from the keys this long. I apologize. It's been a tough year for this momma.  So let me try and catch you up a bit.

Kayla. How is Kayla doing? She is doing great! Aside from the hormones she is going through (which she hates) she is a very happy 7th grader. 7th grade!!! Wow. I don't even know how 5 years has gone this fast. Her growth is very slow still but we managed to grow a whole shoe size finally this past year which is sooooo awesome! She is still very small compared to her peers but not the only tiny girl in her school which helps. This past year we have been growing and nourishing incredible friendships which have healed our souls like you can't imagine. I don't know what I would do with out these incredible people in my life.

In November, we will head back to St Jude for Kayla's 5 year check up! This is where you are considered "in remission".  It is honestly a word that is kind of meaningless to those who have battled cancer. Don't cringe. Let me explain. I am not sure who they comfort really. Up until 5 years after diagnosis... if your scans remain clear, you are "cancer free", "stable", or "N.E.D - no evidence of disease".  It's a very scary time each and every time b/c you just never know when or if something new might rear it's ugly head. Treating cancer can cause cancer. Isn't that the most terrible thing ever???  I hate it. It's something I never knew before this.

Back in May, when Kayla and I were at St Jude, we had a bit of a startle when a freckle showed up in the back of her eye ball during her visit with her Eye Surgeon.  There it was. This unpigmented freckle. It was flat and round and benign. But this is now something that must be watched and measured every 3 months (we will do this here locally at UCSF and results will be shared with St. Jude).  Other than that, Kayla is a very normal moody 12 year old girl. And I love it.

Anthony just turned 9. NINE. I can't believe it. He is a sweetie who never misses a night of hugging me and telling me how much he loves me. The day before his birthday, he cracked us all up showing up to school in a suit. "It's to celebrate my last day being 8".  He's a hoot. That's for sure.

Denny got through his first semester at school with straight A's. He had the most incredible teacher who loved him as much as he loved her.  There is no school during the summer, so it was a nice break from the books. But there is no rest for Den. He was hired at Novato Community hospital where he worked A LOT while not at school. He works in the ER checking patients in, the Lab registering patients for work to be done, and in the main hospital as the main switch board operator. The experience with insurance and processing insurance has been a huge help with all of the things we have been through with me which is a whole other long story. Well, maybe not so bad. I can attempt to summarize. So now den is back to school (got only one problem wrong on his first test this semester... he's a rock star student!).  He's working weekends to keep his position at the hospital. Very happy about this. It's hard to get a hospital job these days. Very hard for new grads so this will be a big plus when he finally graduates!

So, we know that stress can do a number to you. Yeah. Well, my stress finally set off a major bomb in my body. Several really. November 2014, I started to have some funky blood results come back. Nothing major, but not normal. We watched it and I continued to just go about life. I didn't really think too much about it or worry.  Then in March... BAM. Ok Annie. Your turn. Have fun with this! March (6 months ago) I had the most horrific gastric attack. It was bad. I mean b.a.d.  It was so incredibly scary. The pain reminded me of labor. It came on so fast and hard and caused me to be so nauseous. Once that started, it didn't stop. Unlike anything I have ever had before. After hours and hours of it, we decided to head to the ER. I was admitted (which ended up being 3 nights) and they started me on an IV and pain meds. They sent me in for a CT scan for my stomach. I did have some pretty upset upper intestinal areas but... you know when you hear of them looking for one thing but finding another? Yep... that's what happened.  The CT showed that I have severe aortic stenosis.  It's severe narrowing to the blood supply that comes off of my heart. It's not in my valve. It's in my actual aorta which is much more rare.  Long story short, 6 months later and I now have 4 specialists at UCSF. Gastro, Rheumatoid, Hepatology,  and a vascular surgeon.  I have had 6 MRI's, two more CT's, and an ultrasound. For sure there is something Auto immune going on. They have ruled out every one of the most common ones. But the Stenosis is the immediate thing we need to address. So, I have an awesome Vascular Surgeon there, Dr. Hirimoto. She has come up with a plan.  Surgery.  I am scheduled to go in 4 weeks from today, Oct. 4th. She says she is clearing the board for me that day.  It's a long one. I also have stenosis in the renal artery (the one that goes from the aorta to my left kidney). So the plan is to go in and correct that as well.  They will have to temporarily cut off the blood supply to my kidneys one at a time during the procedure.  The portion of my aorta that is stenosed will be replaced with something man made.  The hardest part is where the stenosis is located. It's right where it branches off to your major lower organs. So they will have to open me up and move my organs to the side to get to the area. I am told to plan to be in the ICU for about a week. Then home for 4-6 weeks to recover.  The biggest risk is to my kidneys. So if you pray, please please do so!

Kayla is scared and mad. She keeps saying that it isn't fair that we have to go through more. That we have been through enough.  The thing that makes me upset is that they can't link the gastro attacks with this.  I have been back to the ER more times than I can imagine with the pain and vomiting. It caused me to miss so many days off at work. I did the diet elimination thing. I even got attacks when I didn't eat anything at all. Believe me... they have tested me for EVERYTHING.  The gastro specialist quickly ruled food out as did we.  It has nothing to do with what I eat.   I still have a feeling that fixing the blood flow will help with the stomach too. Our bodies are crazy!  The good news is that tomorrow will be 8 weeks since I had my last attack. Seriously the longest I have gone since March. There was one point where I went 6 weeks and then BAM. I got one just about once a week for months. Even spend a night in the ER while at Kayla's check up in Memphis. Not a good story. Nope.  So hopefully that is behind me.  Fingers and toes are crossed over here.  Still we will need to figure out what the heck is going on with me rheumatology related. And there is more but I won't go on and on and bore you with my stuff. I am incredibly anxious to get this over with! They think I have had it my whole life and that I have no idea how good I will feel once I am healed. I can't wait to feel that for myself!  I just need to be well before Kayla's trip back to St Jude in November. (it's right after thanksgiving)

Ok, I will update soon. I won't go this long. I really had no idea... time flies when your having fun and even when you aren't apparently!

Love you all! Go Kayla Go!!!!!



Camp Okizu pick up July 2016
Camping (year 2) Lake Morning Star Kayla and Mackenzie after a mud fight <3
Last morning camping
Enjoying lunch in San Fran after one of my ultrasound (they are the best helpers!!!)
Celebrating Jack's birthday and years of continued friendships!
At school dressed to the 9's... last day of being 8. God I love him!
On our way to the Giants game for the big 9!
Pre-Game luxury thanks to St Jude night at the park. They all caught balls during the warm-ups!
Dibbs at the game. He LOOOOVES his birthday!
Happy 9th Anthony!
 


Good night all... <3

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