BEN--the good and the bad news of the last three weeks...

I can't believe it's been three weeks since my last update. Sorry about that, we're just busy. I don't know quite where to start, guess I'll just jump right in...

First of all the GOOD NEWS---

The bone marrow test mostly all looked ok. That was good.

Ben's platelets and white cell count which had continued to tank after my last post finally this Tuesday started coming up. Still not where we want them to be but getting better. That is good.

The CT of Ben's sinuses showed the adenoids (where the cancer was originally found and removed) do not appear to be growing back. That is good news.

The EBV results (basically the number of copies or replications of the cancer) at the time of my last post we were uncertain what the results were at that time because the test had been run differently. We decided to throw out that test and repeat it and the level came back at I think 678 (that is how many replications per mL of blood sample, that seems like a lot to me since a mL is tiny but it's not too bad really, considering), one week later though it had jumped to 9,740 copies per mL and the following week a further jump to 10,600 (cancer sure replicates fast!). To put this in perspective, that last number was a jump of more than 10x the amount of the level just two weeks before and almost 5x the amount at the time of his original diagnosis. This week's level was down though to about 3,300 and I'm glad it is going in the right direction. So that was a lot of bad news these last few weeks, but it's getting better.

Now for the NOT GOOD NEWS---

The CT of the sinuses also showed that the sinuses were even more diseased than they were before his major surgery in February. That was bad news.

Ben has Para Influenza 3, a terrible sinus infection (obviously after that CT) and worse of all C.Diff! He's had it twice in the last month and we do these crazy IV strength antibiotics four times a day for 14 days and it just comes right back. This is the most difficult bug to kill I think. Especially because it flares up whenever he's on antibiotics for anything else, which he always is! Grr! Why can't these terrible germs leave him alone! This is seriously bad news.

Ben's nutritional stand point may be the most difficult battle right now. His Cardiologist said on Tuesday it is what she is most concerned about because it may be why he can't seem to get well and just keeps getting multiple infections back to back and on top of each other. He weighs 11 kilos with his clothes on (that's about 24 pounds), he is in the same size clothes and shoes he wore about 18 months ago! Dr. Everitt spelled it out for me--he hasn't gained any weight AT ALL since he was 15 months old, that was 16 months ago! In fact, he has only lost weight. She is very worried that he is going to get to a point nutritionally that he cannot recover from and that his body will keep getting sicker and sicker. Normal nutrition isn't just so kids can be cute and chubby, most importantly it is absolutely essential for brain development and immune system function. It kills me to worry that Ben's brain doesn't have the nourishment to grow and develop (what will the long term effects be of this?) and no wonder he has cancer and is always, always sick. His little body is really struggling. And that is very, very bad news.

But here is where it gets complicated. Ben needs to have an endoscopy and colonoscopy and intestine biopsy to make sure first that his cancer isn't hiding out there and that he doesn't have some problem with his body being able to digest food and process it properly and second to know for sure if he has the milk allergy and possibly celiac disease (both of which he's tested positive for in blood tests). The doctors don't want to do the tests while he has active infection, so it's kind of a real bummer that he is ALWAYS sick! We have rescheduled this procedure several times and now are shooting for the 29th if we can find a dr willing to do it before he's finished his C.Diff antibiotic.

Second thing is that Cardiology has decided he needs another G-Tube button (which is a hole that comes out of his tummy) for feeding him through and it needs to be put in ASAP. He's had this before and it's not something I am thrilled to do to him again but we will if it's necessary. But, like the endoscopy they won't do the surgery until he's infection free (anesthesiology says he needs to be infection free for 4 weeks in a row), but how do we get him infection free? I have no idea! So that means we just need to find doctors willing to do surgery while he is so ill. I know it is more risky, I get that and I've seen him be admitted for 5 days after an out patient procedure because he can't get off oxygen, but what else can we do. Time isn't really on our side. In the mean time I am pushing for an NG tube to feed him higher calorie milk-free formula through a tube in his nose. I am waiting to hear when he'll get that. I know he is going to absolutely HATE it. As a baby he was constantly pulling it out. That and the fact that he would wrap it around his neck while he slept at night were the reasons we went to the G-Tube. The NG just wasn't safe anymore. I am super worried about all this and if I have to stay awake all night to make sure he doesn't strangle himself I guess that's what we'll do. Because I know none of his other issues will get better until he is nutritionally healthier. And that means we need a way to feed him since he won't eat enough, we need to figure out why he has such terrible diarrhea and that needs to stop so he can keep the calories he eats in his body, and we need to make sure there isn't something else going on we're missing. This is a super big battle and Dr. Everitt says if we don't find a window of opportunity to give him some help very soon it could turn very bad. That is motivation for me and I am pushing and advocating and doing everything I can.

Today he had fevers, lots of abdominal pain and cramping and diarrhea, is really irritable and will hardly eat. He's sleeping in my bed so I can watch him.

Poor Benny.

Thank you everyone!

We are so thankful for the support and prayers for Benny these last few days. He took a bad turn and was admitted through the ER last night. He spiked a high fever and by the time we got to the hospital they said he was in shock. He tested positive for some virus but I think he was just dehydrated from two days of not eating (fasting for the procedure Wed and then not feeling well enough to eat Thurs) because two hefty fluid boluses later and he was a new man. But the docs were worried because he had looked so badly so quickly so we had to stay over. It was a bummer, but we're home now and doing fine. I feel like there's lots to get ready for next week because we have lots of doctor visits, a CT and they may do that endoscopy/colonoscopy/biopsy thing plus it's Aimee's birthday and we're working on the party. I'll post what I hear about the bone marrow results after our visit on Tuesday. :)

What we know so far...

Not much. Sorry.

There still isn't much information that is conclusive. But here's how the day went. Ben saw his main cancer doctor before going down for the bone marrow aspiration and biopsy. It was actually one of Ben's other cancer docs whom we'd met at our last visit who performed the procedure. He was really nice and let me stay in the room with Ben to comfort him while he was falling asleep with the anesthesiologist's help. Then I had to go, of course, but I waited like a puppy right outside the door and only about 30 minutes later the doctor opened the door and showed me the samples (which were taken from a bone in Ben's back) he had taken to send to the lab. There were two jars; one with two pieces of bone that had been removed for biopsy and the other with a red jelly-like, spongy substance which was the marrow. There were also about a dozen microscope slides with the red jelly smeared on them.

The jars were sent to pathology and to ARUP for testing and when the results do come in lots of different doctors will put their two-cents in and weigh on the situation before anyone will tell me anything. We have another appointment with oncology on Tuesday to discuss what they find out. But the slides, our dr did look at those today while Ben was in recovery and then we went back up to her office and she gave us one piece of good news. She still doesn't know what is the problem, but she found out two things that aren't the problem, so that's good.

I didn't know that much about bone marrow, but I am learning it's basically where blood (red cells, white cells, and platelets) are "made" and mature until they are ready to go out and do their job in your body. So one reason to check the bone marrow is to tell how well your body is making these. So if the white cells and platelets were terribly low in the marrow, that would mean his body is having trouble making them. One cause could be Leukemia but there are several other conditions that inhibit the marrow's ability to make enough of these cells. But Ben had what our doctor thought, just by looking at the slides in the microscope which isn't an official count but is still promising, that he is indeed still making enough of white cells and platelets. That means that something is killing them as they move throughout his body. Probably a virus of some sort she suspects. The most likely culprit is the EBV virus (his cancer-causing virus), because we already know he has it and especially because we already know his levels are on the rise. What the level is from yesterday's test I still don't know yet.

On Monday we're heading to Riverton, ugh, to meet with Ben's ENT who did his sinus/adenoid surgery because our oncologist thinks maybe his adenoids could be growing back with the cancer in them and wants the ENT to check it out. Also oncology will consult w/ gastroenterology to see if they would be willing to try that endoscopy/colonoscopy/biopsy they had planned a few weeks ago to see if the PTLD is hiding out there. We can also try another CT scan to see if that shows anything new.

So see, we really don't know anything conclusive. We don't know what's really the problem or what to do from here yet, but I hope with so many people on the case we'll figure it out soon. As of right now I think the immediate concern is the fact that the platelets are dropping so quickly so bleeding is a big worry. Internally and externally. He is bruising all over and is really dizzy, he loses his balance and falls over every time he stands up so it's not really safe for him to be up and about a lot and his doctor said absolutely no stairs. Before we left the hospital today, his doctor saw him wobbling around and said she was almost positive he'd be admitted through the ER this weekend. She's usually an eternal optimist, but today she actually said she doesn't want to be an unrealistic optimist when the situation is serious. I guess so when she says they'll admit him for a nosebleed for example. More info to come in the next few days. Thanks for all the prayers everyone!!!

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!