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!

"Hotel on the Hill"

Ben's hanging out at our favorite spa for kids, the "Hotel on the Hill" as some of our cute heart buddies have named it. He's been there since Monday when we just went for a routine rituximab treatment in oncology. He spiked a fever, looked awful, really awful, and now we're getting to know everyone in the ICS.

So many crazy things have been happening lately. It's been a little hard to deal with today. I'm not sure we're holding it together as well as we'd like. Me at least. I nearly broke down crying to the Rainbow Kids team, not that they would have cared, that's what they are there for. It's just getting hard, ya know.

I don't mean to complain, I'm just tired and wanting desperately to hear some good news. Hoping for a change in our bad luck streak and a break from the hospital so we can rest, be together as a family, and put our life and our home back together.

We're worried about Ben, he is more complicated than ever and some days it really takes it's toll on everyone, emotionally, physically and mentally. Poor Ben, he is so stoic and brave. Been in the hospital like 16 or 17 days of the last 34. Also in that time, last week we were back and forth to PCMC w/ Aimee. She had some crazy virus and was having fevers almost nonstop in the 104's for 4 days. She needed fluid boluses and lots of rest but is perking up and is back to school now (our kids have year-round school so we started back 3 weeks ago). So if you add those to Ben's days and all the days for lab draws and other appts, etc. it feels overwhelming.

I'm gaining weight and getting more scary and haggard looking each day too, and I try to sleep and eat when I can. Seriously, my eyes are sunken in, I look like Ezma from the Emperor's New Groove. It's starting to bug me too. The years are just taking their toll I guess.

I'm trying to be positive, it's certainly no one's fault and everyone is being helpful and kind and we really appreciate it. It's just still hard. Sometimes I just want to stand on the patio on the third floor, hold onto the metal bars and yell at the top of my lungs for all of the metropolis to hear, "This STINKS!!!"

I left the hospital tonight to come home with the girls, I hadn't seen them since Sunday and there's lots of homework, laundry and dishes to catch up on. Cody is with Ben and I'll head back up right after taking the girls to school tomorrow. But I just wanted to share something that helped a little with what I was feeling earlier today. We were reading scriptures tonight and we came across a few verses that seemed to be specifically for me today, don't you love it when that happens!

Indulge me please...

Alma 34:16, 22-23

For behold, he said: Thou art angry, O Lord, with this people,

because they will not understand thy mercies which thou hast

bestowed upon them because of thy Son.

If so, wo shall come upon you; but if not so, then cast about your eyes

and begin to believe in the Son of God, that he will come to redeem

his people, and that he shall suffer and die to atone for their sins;

and that he shall rise again from the dead, which shall bring to pass

the resurrection, that all men shall stand before him, to be judged at the

last and judgment day, according to their works.

And now, my brethren, I desire that ye shall plant this word in your hearts,

and as it beginneth to swell even so nourish it by your faith. And behold,

it will become a tree, springing up in you unto everlasting life.

And then may God grant unto you that your burdens may be light,

through the joy of his Son. And even all this can ye do if ye will. Amen.

Is the problem with me that I've not been noticing enough and trying to understand the mercies of the Lord? If I can not only muster my faith, but nourish it, I know I will be blessed. I guess sometimes I just need a reminder. Hope you don't think less of me for revealing my weaknesses. Don't worry, I'll get working on it tomorrow. Chin up! :)