Update on Ben...

Ben February 2009,

the day before he was finally discharged from the hospital to come home.

So here's the deal, long-story short, sort of anyway...

In an earlier post I'd mentioned Ben has been struggling but haven't had much time to post details. Here's the last few months of Ben's health, in a nutshell--

--In February he had a huge sinus surgery, adenoidectomy and had tubes put in his ears. He'd been sick for a whole year and we'd tried lots of other treatments leading up to this surgery. The adenoids were sent for biopsy because they were large and CANCER, specifically PTLD (post-transplant lymphoproliferative disorder), was found.

--By the beginning of March lots, and I mean lots, of tests were done including a full body CT which showed the cancer was indeed all over his body but seemed to still be in the early stages. His dr's decided to not rush right to chemotherapy (chemotherapy and transplant patients are not a great combination) but to just reduce his immune suppression meds to bring back his immune system to fight it (it's essentially cancer of the immune system after all). So that's been the plan and things were good for a few weeks, the numbers were going down. We were happy.

--In April Jocelyn had bladder reconstructive surgery and got terribly sick and was more often inpatient at Primary's than she was out for two weeks. During that time Ben had a heart catheterization and biopsy. The concern with lowering immune suppression meds is that the heart may reject, but the biopsy looked ok, a few small issues, but overall, pretty good. We were hopeful. We also found out in April that Ben is allergic to all milk products, so we put him on a milk-free diet hoping that would cure his TERRIBLE diaper issues. Cody left for his deployment and we were blissfully ignorant thinking all our crazy hospital time was behind us for the present.

--Well, that was a crazy thought! And it has been crazy ever since. We are still at the hospital tons. In May we had super long clinic visits with oncology, cardiology, gastroenterology, and nutrition all in one week! Not to mention that same week we also had to go up for four days of stool samples! Poor Ben has been losing weight like crazy, he really is so tiny, and the diarrhea just wouldn't quit. We were all set to do an endoscopy and colonoscopy/biopsy when the stool tests came back that he has C.diff (like the worst bacteria EVER, seriously, it's like the equivalent of the Black Plague at the hospital because it is so catchy and SO hard for kids like Ben to get over). He's been on two weeks of crazy strong antibiotics to help with that and has just finished his dose. Another stool test will tell if it's gone or if we have to continue.

So we didn't do the intestine biopsy because he had active infection, plus his blood test had shown his platelets were low (he usually runs between 220-275, normal is 150-400) and Ben's were 75. A week later, after dr's chose to stop another immune suppression med to see if that would help out, the platelets had dropped even further to like 50 something. Then today after 2 weeks on the antibiotic and with the anti-rejection meds as low as we can go the platelets still dropped further-- to 42! He is covered in tiny, and not so tiny, bruises all over his body and he seems pretty dizzy too. He's also had some EBV tests (cancer blood test) which look like the cancer is on the rise. How much and where it is exactly we don't know.

On a side note, they had started a new medicine to increase his appetite and I think that is improving, it's just that, now that he's hungry, he doesn't want to eat milk-free stuff anymore. (I agree, in my mind it doesn't take long for that diet to be super "un-fun".)

So Cardiology was nervous today, symptomatically, he seems so much better--the diarrhea is beginning to improve and he is eating more and is quite a bit happier it seems. So in some ways he's so much better that if it weren't for these crazy platelet results and the fact that the cancer tests are on the rise I wouldn't feel so concerned, but cancer, as you know, often doesn't have a lot of loud crazy symptoms that are easy to recognize (like profuse diarrhea or a bad cough that let you know you are pretty sick). Cancer can be silent while wreaking havoc on a fragile little body. That is why it's absolutely imperative we rely on the blood tests and other tests to help us know what's going on that we can't see.

Ben this February.

Ben's oncologist has ordered a bone marrow biopsy for tomorrow hoping that will tell us what is going on and what can be done about it. I am feeling a little terrified. Ben's never had one of these before so that makes me nervous, but also I am worried about what the results might show. Where is the cancer hiding out? Will they start chemo? Is his body strong enough to deal with that? I can't see the future, I don't know how this will all play out. But in the meantime I will keep doing my best to take care of him and our other three kiddos and put it in the Lord's hands and hope for the best. Please keep him in your prayers if you can. Please don't underestimate what a help that really is for Ben and for us as a family. He is a living miracle and we are tremendously blessed to have him.

I Am a Child of God!

That knowledge has made such a difference in my life!

A very great loss...

Ben's cardiothorasic surgeon, Dr. John A. Hawkins,

passed away on May 15, 2011 after a 25 month battle with pancreatic cancer.

I cannot tell you how much we will miss this wonderful man.

Our hearts will forever be thankful for all he did for our son.

Our thoughts and prayers go out to his family.

Ben is struggling...

We've had quite a bit of bad news in the last few days about little Ben's health. I'm kinda too tired right now to write it all, I'm sorry, I'm exhausted. I should have some more definite results by tomorrow or early Thursday so I can post a good update then. For now, please, please do all you can to pray for him. He's doing his best to hang in, but I'm a little nervous. It is getting scary...

The Rain...

I have always loved the rain. Today, I've heard several people complain what a pain it is, but I just don't see it. I love it! Since way back when I was a little girl and Laura and I would sit on the front porch huddled in big blankets with warm cocoa to sip. We'd just sit there and watch and listen for a long time. Those are some of my favorite memories. It was beautiful! I wish today I could have done just that curled up on the front porch with a blanket and a good book.

Ah, simple bliss.

My latest projects....

So I usually set a goal to accomplish a few projects here and there every time Cody is away. This time, I have time for a few small projects and a few bigger ones too. I am getting a later start into Cody's trip than I wanted to, he's been gone almost 3 weeks already, but we've been catching up on a lot since I was gone at the hospital so much the last three months and my house really suffered. Better late than never though. As I finish the projects I'll post pictures....

First our wonderful family pulled together and helped me get my garden planted (Carole Ann even donated ALL of the plants! Thank you!). We made quick work (not so much me this time, I was a gopher finding things for people and chasing children, but everyone else worked hard), and had it all beautifully planted all in one short Family Home Evening. It was great fun and we are so thankful to be so watched over, supported, and loved. Can't wait to enjoy the fruits of our labors, literally!

Carole Ann is on the far right and on the left is Alyssa, Carole Ann's daughter, and her hubby Les and their daughter Breann (who just had her tonsils out 3 days before!)

Here's my mom holding Sarah and Elder Speceiro, my brother Brian who's on a service mission to welfare square, holding Laura's little Josh.

Ross working hard.

Laura too, no surprise there. You know she and JD brought their family over on Saturday and JD turned my one tall garden box in to the two shorter ones while Laura, with Josh in a backpack on her back, mowed my lawn and helped me rake all the sticks from my dreadful stick-throwing trees. I couldn't get a picture of JD on the garden night, he was always too busy workin' clearing out another project (pictures to come when it's done). Cody and I nicknamed the Stouts "Old Faithful" when we were first married and realized they are usually the first to offer to help and always the last to leave. Don't know how they find the stamina! They are endlessly generous, but then everyone in my family is. We're really blessed that way.

I really missed seeing the Joneses, my sister Cassy, her hubby Brandon, and their son Boston though. Wish they could have come but Boston had been sick all week :(

Sarah really felt like she was helping...

and she didn't eat any dirt or onion bulbs. But she did empty almost the entire carrot seed package in the dirt. Uh oh!

Aimee and Jake always entertain themselves pretty well, which is a huge help!

Jocelyn loves to garden and was so enthusiastic and helpful too!

Ben was having a rough day and wanted to be held a lot. He didn't feel very well.

In this bed we have:

LOTS of tomatoes, mmm!

lettuce varieties

peas

cilantro

onions

tomatillos

This one has:

broccoli

cauliflower

zucchini

yellow squash

butternut squash

variety of peppers

and a carrot border around the perimeter which will be darling when it sprouts

I know the beds look crowded now but the early crops will come out before the larger things get too big so I think it will work fine. We also have a bunch of herbs and loads of strawberries and some cucumbers planted along the side of the house but I didn't take any pictures. It's gonna be awesome!

Also, Cody and I are doing some little projects around the house to spruce things up a bit and make life a little easier. We have more ideas than money, but having a house is a process, and ya can't have it all at once. So, most important things first--my hideous upstairs bathroom. This bathroom is primarily just for guests and it mortifies me to think that's what people see when they come to our house. I've hated it forever, but when the home inspector said he detected moisture in the flooring I knew I'd finally get to fix it up.

This is really the only "before" picture I have. Ben's obviously much younger and was helping daddy get the bath ready. I think he couldn't even walk yet so that was a while ago. But it shows the old bathroom with the floor (it was in worse shape than it looked) and the shower curtain which matched...

the wallpaper border that was peeling terribly, which also matched the two fabulous paint colors, which also matched...

the rope, yes rope, trim the previous owners had nailed to the ceiling. Oh man.

Here's the old knobs that now...

look like this.

And here's the new tile floor just in the early stages. More pictures to come soon!

Sorry Cody!

Sorry sweetheart, I know how you feel about this. And I try, really I do. But admit it, the odds are stacked against us, I mean, with you gone, Ben feels like the odd duck out and occasionally succumbs to peer pressure. I turned around and he was smiling and running around in a dress! Hurry home, Ben keeps trying to play Barbies! Love ya baby!

The rodeo...

Cody got tickets from work the weekend before he left and we went. My sister Laura, her hubby JD, and their boys Jake & Josh were planning to go already so we met them there. It was super tough to get a picture of the action, technology isn't exactly my best friend and I still don't know how to work my own camera very well. Sad there's no pics of Cody, he had the camera most of the time. :( Miss that boy!

Anyway, here's what we saw, well, there was more of course, it was a rodeo... :)

Here's me and Laura, chatting away...

I can't believe how often (seriously!) we get confused for each other. Everywhere we go people mistake us--it's like high school all over again. "You must be twins!" Guess I'll always be "little Laura". :)

I must have been totally distracted and didn't see Benny eating Sarah's "scooby snacks" as we call them. She seems irritated. Hee, hee.

Jake and Ben

Here's JD and Jake right after Jake did the chicken run. It was literally so, so funny and Jake, who's three, did great keeping up with all the big kids.

We can see how Aimee felt about the Bulls, too scary for her!

Not sure what's up with Jocelyn lately. She's happy, chatty and her normal self at home, but in public she's super quiet and doesn't really smile.

What's up with that? A phase?

Awfully sweet.

I'm a sucker for pictures of my kids lovin' each other.

It's good for a momma's heart.

The way they eat....

says a lot about their personalities...

Ben

Careful, methodical, hands me his bowl half full of milk asking for more cereal. Says please and thank you. Rarely spills. Left handed.

Can get dressed before eating breakfast.

Sarah

Definitely cannot get dressed before meals. Uses both hands, promptly throws spoon on floor.

Ends up with a bowlful of milk in her lap or her tray (which she sucks and slurps up--it's hysterical!)

Strategically places every piece of Captain Crunch on her face and in her hair, that includes the one in her ear. She stuck it there to save for later no doubt.

Ok, I had to go back and add these...

I guess that means she liked it!