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!

So Ben did not have his surgery today. He did the whole colonoscopy prep yesterday, which was sad for him, and then today he went down, checked in at 6:30 am, and the dr's said he was too sick to have the procedure. They did a chest x-ray and he has pneumonia. Thankfully, so far, it's not a bad case because he's being his same cute, smiley self. He's home now with another new med and is taking a nap with Cody. I have mixed feelings. I really wanted to get the biopsies and see what is going on inside his body, so we would know what treatments to start and we can get that going. But of course, if it's not safe to do anesthesia because his lungs are sick, I wouldn't want anything to happen to him either. It's also hard because I couldn't go to the hospital with him today, Cody had to take him by himself, which has NEVER happened. I am rarely ill myself, but have been quarantined with a yucky stomach flu for the last two days. I was sad not to be there with Ben, that was hard for me to not know what was going on, to not be able to talk to the dr's and give my input, and especially to hold and comfort Ben. Of course, he was totally fine with Cody. Cody's a wonderful dad! I've just never not been there. I think we will try again for the surgery sometime next week. They will call us to schedule. Darn it. Poor Benny. Thanks for the prayers for him. :)

Some bad news :(

I always have good intentions to post when something happy happens, I just don't really get to it. New Year's resolution I guess. For now, unfortunately, bad news...

So here it is, remember those pesky EBV blood results? I did a post like 6 months ago explaining it a bit. We've been following them a lot lately because this year has been so hard for Ben. He's been in and out of the hospital so much!, he's still getting the sores in his mouth, still has diarrhea, etc, etc.

I was trying to remember, and I think the highest his EBV levels have gotten to when we've tested them is around 13,000. Remember, that is the number of copies (or replications of the cell) per 1 ml of blood serum. I just had a phone call from Ben's oncologist today explaining his latest results were over 100,000! That's very high.

She said she would like him to be able to enjoy Christmas next week (of course we are watching him closely and if he needs to go in sooner he will), and then after that, on the 27th, he is going to have another endoscopy and colonoscopy with biopsies. The oncologist said she was sure they will find the PTLD. With EBV that high, who knows what they'll find. I think they may biopsy the sores in his mouth while he's in surgery, though, it seems likely they are the same PTLD as well.

When the results come back, we will decide what treatment plan to pursue, of course this means more chemo, the yucky kind, not just rituximab like he's had before. This is no fun for poor Benny. I am thankful he'll get to enjoy the holiday; he's getting big enough I know he'll love it! But I am worried and hate to put off the surgery. When he's sick like this, and the results look so badly, I need as much info as possible. I hate to wait to start treatments too, will it just get even worse before then?

Thank goodness he's extraordinarily tough! Please remember Benny in your fasts and prayers. :)

Back in the ICS

So, we're back in the ICS, admitted on Monday. Doesn't look like we're going home today either. Poor Ben. Please keep him in your prayers.

Ben's Home!

Yay! What a difference a day makes! Ben's home!

His ANC is only 200 though and since he was able to get his last Rituximab treatment in the hospital his immune system is essentially non-existent so we have to be super careful (even more than usual!) to keep him away from germs. He was so happy to come home though.

What was keeping him in the hospital was a positive blood culture from Monday's draw. The repeat hadn't grown by today so that meant we wouldn't be getting a new PICC line (Ben's cracked and had to be taken out last week) placed for iv antibiotics. So that was really great news.

While he was in the hospital, his cheeks got really swollen and we discovered he had these two huge ulcer/abcess like things with a large white patch, one on each side. The left side is much bigger than the right but in both the swelling has come way down. There was lots of debate if we should biopsy them while we were there. The attending dr thought for sure they must be the PTLD. If so, Ben's oncologist said we'd have to start the chemo, but since they probably wouldn't start it with his ANC so low we decided to wait to biopsy it until his endoscopy and biopsy in one month.

Of course if the sores were to get much worse before then, we'd do something sooner. As it is, we are hospital-free until Tuesday when we go back to oncology for labs and a recheck. As always, thanks for the support and prayers!