Brady...

I still can't believe it. Wednesday morning, Brady passed from this life and returned to our Father in Heaven. He is the best big brother I could have imagined and I will miss him everyday, tremendously. I wanted to share some thoughts from Cody about his brother...

Today we lost one of the best!! A true and faithful follower of Jesus Christ!! My little Brother, Brady!! Brady loved the Lord and his Family!!! He walked a painful, lonely road. I tried to take care of him growing up and comfort him as he got discouraged, but he really cared for me and comforted me. After 30 years of illness and surgeries, God has called him home. I am so sorry little brother for not always being there when you need me. You always said, I was your Hero and you looked up to me, but what you didn't know was you little brother, are my Hero!! I will always cherish the memories you and I shared together here on earth. You're earthly journey has ended and you now can have peace little brother. I love you!!! We are an eternal family , you always knew it. Brothers in life and brothers in death, I'll stand by you now and forever, my little brother!! Love your big brother, Cody.

My little brothers Missionary Farewell (funeral service) will Thursday, December 27th at West Haven Stake Center. All information can be found in Bubba's obituary, which will be in the Sunday Standard-Examiner by paper or online. It will also be posted on the Myers-Mortuary website at http://www.myers-mortuary.com/_mgxroot/page_10722.php. 

Please come and pay tribute to one of God's valiant missionaries, my little brother!!
Thanks for your prayers & support during this difficult time.

To offset the funeral costs for Brady, my sweet sister-in-law, Bernadette Gireaud-Hamer, set up a memorial fund at Chase Bank where donations will be accepted.

sick baby

Caleb has meningitis.  In the hospital.  Only 5 weeks old.  Please pray for him.

Baby Boy!

Caleb Wyatt, born November 9, 2012.  Isn't he a doll?!  Super sweet and snuggly.

We are so blessed to have him!!!

Wait for it....

Guess what!  Having a baby tomorrow!  And Ben just got out of the hospital, again!, today.  Wish us luck and keep the prayers coming for Benny.  I'll keep trying to find that camera cord so we can get a pic of our new little guy posted soon.  :)

A few updates...

Wow!  Time flies these days.  Tons has been happening around here, most of it would be better to post with pics so that means I really need to find that camera cord.  It's around here somewhere, right?
In other news...

Mainly 3 things on my mind at the moment:

First and fastest to blog is we are having another baby, soon actually.  I'll be started Nov. 9 if I haven't had him by then.  And that's the fun bit, it's a boy!  That should be fun!  Everyone's excited, though I admit I am terrified with so much that needs doing and not much time to get it done.  Eek!

Second, we thought we were moving to Vermont, it was really in the works and life was quite on hold with preparations, and then, at the very, very last minute, it fell through.  Which turned out to be an amazing blessing because....

Third thing on my mind non-stop is... Ben's new condition---(keeps him inpatient at least 2 days a week and at the hospital for treatments, tests, etc. at least another 2 days a week)
       It's called Evan's Syndrome and has been a big struggle for Ben so far.  Not that I'm not optimistic for the future, but this has definitely been rough for him.  It all started on Sept 22 when we found a hematoma on his back without having had any injuries.  We thought it was strange.  He had a blessing and we watched it during the night.  The next morning it was double in size.  I called his Hematology/Oncology drs.  We made an appt for the next day.
       But later that same day more and more hematomas and bruises were popping up along with lots of petechiae (tiny red & purple spots all over skin on body).  I was nervous.  I got him in to another dr that would see him that day.  He ended up sending us down to the ER where it was found his platelets were 5, supposed to be 150-400, and so Ben was admitted.  While in the hospital he had IVIG treatments and given lots of steroids to start.  But unfortunately no change in the platelets.
       He tested positive for antibodies for white blood cells, platelets and red blood cells; and that's why he was diagnosed with Evan's Syndrome.  What this means is that his body recognizes his own blood as foreign and attacks and destroys it.  We already knew about the white cells, since he'd been battling autoimmune neutropenia for the last year.  Now to find out the other blood cells are affected too is a serious bummer for Benny.  
       So...we went home, with high steroid doses that make him feel truly awful and with instructions from the docs to watch him closely, particularly for any head injuries (that would cause bleeding in the brain) and any signs of internal bleeding.  We went back frequently to check the blood levels and there was still no change.  He was taken off Prograf, the immune suppression med he's always been on to protect his heart, and was put on Cyclosporine instead.  He also started his chemo treatments again to further suppress his immune system.  With those three big changes, we were hoping to see some improvement.  There was none.
       Instead, last Saturday, Oct 6, he started bleeding internally.   Luckily, it was in his bladder and so we were able to see it coming out of his body, though I will tell you, it was terrible to see.  He was promptly admitted again with platelets now only 1.  Given platelet transfusions to try to stop the bleeding but they didn't really help; I guess his immune system attacked them too quickly to get benefit there.  He was started on crazy, rediculously high IV steroids, a 3-day dose.  He finished that on Monday and had his second chemo treatment (it's a 4-week plan for that).  Friday he came back for a PICC line placement and a bone marrow biopsy and aspirate.  Still no change in platelet count.  PICC placement didn't go as well as we'd hoped, radiologist says he couldn't place it as deep as he wanted because all his veins, etc, are completely occluded from years of intense use.  Tell me about it. Seriously.  Not sure how long the line will be usable.  We'd like to place a more permanent port, but surgeons won't do it until his platelets come up significantly.   Ben goes back Tuesday to check count and to get next chemo treatment.  Should find out bone marrow results by end of week.
       As far as how he is doing with all of this, you know Ben, he is amazing.  That's really the best word for him.  He's still covered in huge hematomas and lots of bruises and red dots but he is super stoic and tough and if asked how his bruises are he answers that they are fine and they'll be better tomorrow.  He doesn't complain about anything we have to do to him, though it's obvious he really hates the cyclosporine.  It was hard when he had a lot of steroids going through him because the side effects were really not fun for him.  That was hard.  So glad they are starting to wear off a little I think.

       Hoping for good news on Tuesday!  Hoping these crazy contractions just go away until I have time to deal with them and that we can get all we need (which unfortunately for a nesting momma feels like the bare necessity) done before baby #5 joins the family.  By the way, still no name for him, taking suggestions....  :)

He's happy no matter what or where--

When in the hospital, most of the time, Ben looks like this...

As sick as he is, you would think he'd look like this...

He spends most of his time doing this...

Making all of the noises of course...

And just having a really great time...

We also played with a lot of green play dough and did these craft projects...

He also had fun making this, a picture of "me and you, mom, at the hospital", aww...

Here is the gorgeous view from our room, so pretty...

Of course, it's not all fun and games at the hospital and it takes at least a day or so for Ben to perk up enough to play, but I am always amazed by his resiliency and his great attitude! What a great example!

So happy to be home now though!

(Here's what's going on... Ben has a terrible virus, the dr said "it's like RSV on steroids", plus somehow, coincidentally he developed bacterial pneumonia in both lungs with effusion (fluid in the lungs-it was really bad on the left side particularly), he has bilateral bad ear infections, and unfortunately his PTLD cancer has come back (it flares up every time he's sick) and the way we've been treating it the last few months has caused his heart to be in mild rejection. Lots going on at once and he has yucky symptoms with about every part of his body, but he his happy and on the mend. Such a sweet boy!)

Some other random pics from the party...

It was a gorgeous place and was absolutely the most fun party ever! I wish the pictures were better though. Aw, what fun!

30 Looks Like THIS.....

Today is my 30th birthday.

I think I'm supposed to feel terrible or something, but I don't, I feel great!

I've been thoroughly pampered by my wonderful hubby all day and he gave me a beautiful surprise party on Friday which will live in my memory as one of the most special days of my life. It was, for me, absolutely perfect.

Here are a few pics...

This cake was by far the most beautiful cake I have ever seen. It had a raspberry drip all around the edge and had those large sugar sprinkles over the roses and lettering, making everything sparkle. It was so pretty and the yummiest cake too. White cake and bavarian cream! I'm not a cake person, but I had two pieces that night and practically finished off the rest since then. What a lot of yummy calories!

The party was a 1940's and 1950's theme--I know, totally me, right!

(I put this photo in "antique" setting so you could imagine it the way I like to imagine it.)

Cody looked super hunky in his "Guys and Dolls" attire and Cassy came over and did my hair and make-up. The lighting was the perfect amount of dim, but unfortunately, none of my pictures turned out very well. They for sure don't do Cody justice!, and I didn't look nearly so pale in real life I think, and you can't see the beautiful job Cassy did fixing up my hair. It was so fun! I was totally in my element, living out my favorite dreams. Many of my bestest buddies, some I haven't seen in years!, were there sharing the good food and amazing music and we literally danced the night away. If it hadn't been for the new shoes on my feet, I could have stayed all night! We HAVE to do this again!

By the way, this party was a huge affair taking up two years of Cody's thoughts and plans and much of my sisters and our parents last few months. They all went to so much work! I truly am so blessed to have such a stinkin' fabulous family!

(The "Paper Moon" you see in the background of this and lots of other pics was literally made by Cassy, she drew it, cut it out of ply-wood, and painted it! Wow Cass, how impressive!)

All three of my girls were decked out in pink poodle skirts and Ben was in the cutest little knickerbockers too. Cody's parents have some pictures they took to send me and then I'll hopefully have some more good pics to post. I know they took a family picture too so that'll be fun to have.

Here's me sitting with my beautiful sisters; Cassy on the left and Laura on the right.

It was funny, we all ended up in polka dots! We thought it would make a cute picture, too bad I wasn't quite ready when the camera snapped. Oh well. I love these two so much! I can't explain how important they both are to me and how much I truly treasure our relationships. They do so much for me on a regular basis. I know I would live a sad, lonely, and seriously boring life if not for my dear sisters. They are strong, amazing women and definitely among the greatest blessings I have!

Truly a magical and wonderful night full of fun and surprises.

I can't thank you enough Cody, for loving me enough to get to know me, really know me, these last ten and a half years of marriage and for doing something so personal and special to me. You knew I would love it, and you were right! You're the absolute best!

(I have lots more pics (especially since I didn't get to post about Cody singing Elvis to me, in costume!) I was going to post tonight but my computer is tired. Since it can't seem to have a good attitude about this project and help me get the photos posted, I'll just have to put it to bed for the night. Maybe tomorrow it will feel like playing nicely.)

The Broken Arm Club...

So tonight we convened the first official meeting of The Broken Arm Club. Jocelyn and Ben are our first inductees.

I told Ben to smile, so he's making a smile with his fingers. Funny boy!

What troopers!

Jocelyn actually broke her arm three weeks ago. The kids were dancing in the family room and there was some sort of collision. I checked it out and though she was mildly complaining she never cried or anything and I guessed it was fine. Then Saturday (I was gone from 4pm Friday to 9pm Saturday for a Young Women Book of Mormon read-a-thon so I missed all this fun action) I guess Joc and Aimee were supposed to be cleaning their room and somehow Aimee stepped on Jocey. She called me at the sleep-over and it was sooo sad, she said, "Mom, Aimee stepped on my arm, with her black high-heels on, and she's still smiling!" And she burst into tears. She was more sad that Aimee wouldn't say sorry and help her than about her arm hurting. It was super swollen so Cody took her for the x-ray and it was obvious at least one of the bones had been broken badly about three weeks ago. It wasn't healing right but was so swollen from Aimee stepping on it that she just got a splint and a sling. Also, both of the bones on the x-ray are seriously bowed. I don't know if that indicates another fracture of the other bone too or if they just grew that way. It doesn't look right to me, and tomorrow, we've been sent to the ortho specialist at McKay and he's going to check it out and she'll get her cast. Hopefully they have RED!

Ben was just trying to climb on Cody who was sitting on the couch about to call the babysitter for tomorrow night. I was close by too and saw Ben dive head first towards the ground. I tried to grab him but didn't get there in time. He didn't fall that hard though, it seemed, but he wouldn't stop crying. So unlike him! He's endlessly stoic and brave. We called the neighbor over for a Priesthood blessing, gave Tylenol and when he still was so sad we ran to the Instacare. The dr said his fracture is a buckle fracture of his wrist and in the scheme of things is pretty common. I guess it's also known as the Toddler Fracture because it is the weakest spot on little kids and so many break them with even minor falls.

So there you have it. Two kids, two broken arm diagnoses, two days. Funny huh!

This week's appts...

Sorry to leave ya hanging, I feel like I've been super busy but I guess not too much.

So Tuesday I went most of the day to Primary's to get the preliminary biopsy results and meet with oncology and cardiology. We did more blood tests and an echo too. The biopsy showed PTLD in his stomach, but I think that was the only place they found it, we don't have the finalized report yet though. I thought that would be great news but the oncologist said with his blood count that high it just means the cancer has moved elsewhere in his body. She decided we should start a 6-month chemo treatment plan, with the first infusion this coming Tuesday. She told me all the risks etc and I was pretty freaked out. I came home and talked to Cody and he became completely dysfunctional. He closed up, went into a shell, and I was worried about him. I don't think he had a good feeling about starting the chemo right now and pretty much told me so. I didn't know what to do and ended up staying up late and falling asleep on the couch. Yesterday morning I was off to a dr appt for myself and Cody stayed home from work to help with the kids for me. As I was driving, our cardiologist called. The chemo wasn't sitting right with her either, and she did some research into Ben's chart and thinks she came up with a pattern we didn't realize before. She suggested we go even lower, to nearly nothing!, on his only anti-rejection medicine we haven't stopped already, to bring his own immune system back to see if that will fight this. She asked if we would be willing to give it up to two months to see if it would help. It's a risk. Certainly the PTLD could get much worse and not respond, his immune system could be too out of practice & suppressed to do it's job right, especially now that he's developed the autoimmune neutropenia too, or even worse, his heart could reject. That would be really bad. But she said she would monitor his heart really closely with more frequent visits and blood draws (more frequent than we already do? Holy Cow!) and that if there is any sign he isn't responding, it's getting worse, or he goes into rejection we can go right to the chemo. That is always on the table. So I went to my appt and came home to talk with Cody. He said let's follow her advice for now, and then next Friday, the 20th, we are going to go to the temple to pray about it. In some ways I think the chemo would be safer, since this particular chemo is what they use for rejection so it won't really hurt his heart. But of course, all of the yucky side effects and risks are scary. But I wonder if with the chemo there is a greater chance of solving the problem. But at what cost? I don't know what is best. Anyway, so there is where we sit right now. He looks good and is acting pretty good too. We'll see how this goes. Thanks for checking up on us!

Surgery, prayers please...

Ben's chest x-ray looks the same as last week as far as the pneumonia, but the oncology team doesn't feel like we can wait any longer for the biopsies. He seems ok for surgery I think, he hated his prep today though. He threw up his last dose of magnesium citrate. Hope he got enough in to make a difference. The surgery is tomorrow and we have to check in before 6 am. We took the three girls to grandma's house to sleep over to save me time and stress in the morning. As it is, we'll be out the door by about 5 and that won't be as bad. It's just Ben and I since Cody has to work. (It's kinda tough to accrue time-off with Ben's health. Oh well.) Once all the biopsies come back, either by Friday or Monday, we'll work on getting his new PIC line placed and start the heavy chemo doses oncology has planned. They said they'll give me a concrete plan and a list of the chemo drugs they'll be using when all the results are in. I was a little nervous about tomorrow, but Ben had a really nice blessing a little while ago and I think he'll come out of the surgery just fine. I'll post when I get home...

P.S. Please keep the prayers coming for little Benny. Thanks!