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!!!