[launch]

SORRY THIS IS SO LONG!!!

I haven't posted lately, but, have visiting the forum, checking on others. Ron has had a very difficult time lately. Back in Nov'10, after the consolidation chemo, his stomach started really bothering him. He told the doc and they told him to take miralax, blaming it on the bowel constipations, and not moving very well, etc.

I had to take him to the hosp back in Dec, due to severe stomach pains. About an hour after he would eat, his stomach would hurt, then get stabbing pains. I took him to the ER. They X-Rayed, blamed the bowel as being full of "waste" and told him to take Miralax (double dose). I then coordinated with local GI doc for an upper GI scope to rule out ulcers, as Ron believed he felt the same pain when he had ulcers over 20 yrs ago. We managed to arrange Upper scope within days, and there were no findings other than a little stomach irriation, but, no ulcers.

The following week, the pain was so severe, accompanied by a fever, so, I took him to the ER again and he was admitted inpatient. They did a colonoscopy and found the bowel severally inflamed where the large and small intestine meet. The "Cecum" actually connects the two, and the Cecum is almost completely closed. Ron was discharged, pending biopsy results.

After just 2 days out of hosp, I had to take Ron back to the ER at Emory due to fever 103.3F. (It was during that major winter/ice storm in Georgia!). I'm so thankful I was able to get him there, before the freezing rain iced over the roads! That happened later that morning.

So, biopsy reports were delivered inpatient. Part of the Sm intestine is badly ulcerated. They performed biopsies and cannot find the reason for the irritation. My personal opinion, after researching, is the Cytarabine from the Induction and the Consolidation treatments. He developed bowel problems after both procedures. The CT Scan shows narrowing of the bowel wall. They have ruled out Chron's Disease, Irritable Bowel Syndrom and TB as causes. They also tested for Lymphoma. The end results being, Ron's tissue is ulcertated. The fix action is to remove that section of the bowel. Before that, they want to explore the sm intestine further with another scope, but, following Dacogen Dec 27-29th, Ron's immunity is very low (WBCs .7).

Meanwhile, since admittance, Ron has had nightly fevers and sweats each night. Like clockwork, around 11pm, it starts. The GI docs were wanting to wait for fevers to recover, Hematologists said to do it now, the fevers were believed to be due to neutropenia. The GI docs were reluctant because, they could introduce bacteria into the blood system with more biopsies, and besides, the MRI isn't showing anything like cancer in the sm intestine and they can wait to explore. Meanwhile, Ron's laying in a hosp bed, muscles wasting away although he does walk laps... He's not able to eat a very nutrional diet. He can only eat soft food and nothing that causes gas. REASON: Gas builds up in the sm intestine, while waste is attempting to move thru cecum.

What Next? I told GI & Hema they needed to be talking. It seemed as one was waiting on the other, etc. a vicious circle. Friday, a decision was made, to put bowel issue on hold for now, counts too low to take action anyway. Ron was also given a BMB because of the return of fevers and night sweats. (If you read our history, Ron had fevers and sweats when first dx with MDS and they went away w/Vidaza, but, when the Vidaza stopped working and the AML Monster reared it's ugly head, the fevers and sweats returned).

We will get the results of BMB tomorrow and find out if Ron's marrow is behaving, or he has regressed back to MDS or worse, AML! A few months ago, I was filled with peace about Ron's disease as described in Phillipians 4:7, but, the devil stole that from about 2 wks ago. Since that time through lots of scripture reading and prayer, I have thankfully regained that peace.

I told Ron, whatever the outcome tomorrow, we will fight it and there are treatments. We do know, if it's Induction Chemo, his body will not be able to tolerate the same protocol he had in Tampa, at least not right now. There are some other options they told me, if it is established that he has MDS or AML. (I'm not sure what they are, but they have mentioned some clinical trials out there right now). They mentioned a drug called L-Cytarabine too, which is supposedly not as strong as Cytarabine itself. They mentioned there are some meds that can be given by IV or pill form.

SO, I guess we really won't know a lot until at least tomorrow, then, the chormosomal aberations will come several days later.

Please keep Ron in your prayers. We're so ready for him to come home! He's been here too long and it's depressing to have gone thru Induction and then, looking forward to a SCT, then, realize, there's a possibility that the race is stopped, before you hit the finish line!

But, I also have to remember, that it's all in God's Plan and in God's time. God may be protecting Ron from a SCT right now.... we have to continue to trust in God and know that he will lead us... and carry us when we can no longer walk.

God Bless you All!
I will update within the next few days.
Cindy