Friends and Family,
I have been wanting to update but have been at the hospital with Ray since Tues and cannot access the blog from there for some reason, so here's a quick update and I'll add more this weekend when I come home again, hopefully with Ray!
He was admitted on Tues during his routine weekly dr appt. His blood clots in his leg and arm were suffering from infection and he wasn't responding to either the blood clot blood thinning medicine or the oral antibiotic he had been taking. His two injection sites in his stomach from the chemo also were severely infected and too sore to even have his shirt brush against them! They looked like severe chemical burns and I guess that's what they were in reality. The dr needed to give him some 'super' antibitotics that can only be given via IV, and thought it would only be a few days stay. Here we are on Friday, still in. Ray was hoping to go home today but he had a fever of 100 this morning and the dr wants him to stay; in addiiton, he doesn't think his infection is completely healed and needs more time with the meds he's on. Ray ended his first week with chemo last Friday; Thurs night he had a near 103 fever and chills and the dr prescribed some antibiotics, thinking there may be some kind of infection, or we were told it could also be a side effect of the chemo. This from the on call dr, not Ray's dr. The fever broke Thurs night and he went to the dr for his chemo shot on Friday am and then on to work all day. All was fine until about 4pm, when he was extremely nauseous and was vomiting at work and unable to drive home. A dear friend and coworker, Scott Cannon, drove him home and he walked in the door with another near 103 fever. This nausea and fever/chills continued every day through the long weekend....fever breaking each night, then starting up again in late afternoon. We thought it was 'normal' side effects of the chemo. Tues I took him in for his dr appt (check up) and procrit shot, and that's when the dr admitted him. He told us that we should have called the next day the fever returned, but we were never told that. He said daily fevers as high as Ray's was NOT a common side effect of chemo, but again, that was contrary to what the on call dr told us Thurs night. I feel horrible he suffered all weekend that way when he probably would/should have been admitted on Friday. Lesson learned and we will be calling the dr at the first sign of anything from here on out!!
Ray developed a second clot in his leg this week so he now has two in his left leg and one huge one in his left arm near the elbow. These infections are responding to the drugs, thank God, and we're hopeful he'll get to come home sometime this weekend. He hasn't slept well at the hospital (nor I) and he had a particulary rough night last night, the one night I left to come home and see the kids and take care of some things on the home front. His IV "exploded" in his arm and it took about 6 tries over 6 hours to get another one in that would 'take'. His veins are just not great right now for IVs. He was without the antibiotics all night, as a result, and that's what I believe caused his setback and fever to return. Just shows he wasn't ready to go home though.
In addition, Ray's blood counts all dropped severely this week. He had to get another (3rd) blood transfusion, which only helps his red blood cells. Also, for the first time, his platelets dropped significantly and are also now well below the normal range. I was very concerned about this but the dr isn't concerned; says its likely a result of the chemo..that initially all his counts will drop the first 3-4 months, and always his counts will drop days 10-17 of his chemo cycle. Wed was Day 10 and that was the day they all dropped. Right on schedule! He said they should 'recover' in a week or so and he thinks the platelets are still ok...just temporary reduction. His white blood count is extremely low and as you know, fights infection in our bodies. That's why his body cannot heal the blood clots or injection sites on his own and he needs the 'super' antibiotics.
Please continue to pray for his full recovery overall, but specifically right now for his infection to be completely healed and that he can go home soon. He has been in alot of pain as well. Finally, he did get an official update from the bone marrow transplant coordinator this week while he was in the hospital. Of his 7 siblings, 6 can be tested (one ineligible due to health issues)....5 have been tested and results in...0 match! Several are matches to each other, but no one is a match to Ray. He has one brother, Steve, who still has yet to be tested and he still has a 25% chance of being a match, so we are praying that will be the case. In the meantime, they have already put Ray on the national bone marrow donor program and have initiated a search for a match. This could take months, we are told. Ray's transplant is very urgent, as I believe I've mentioned, due to the type of chromosome damage he has to his bone marrow that puts him in the highest risk category for this disease. His particular type aggressively moves into acute leukemia (AML) and he needs the transplant before that happens. His blasts are at 4-5% now, and 20% = acute leukemia. The hope is that this chemo will reduce his blasts and increase his blood cell counts to put him in optimal condition for the best chance of complete cure/success with the bone marrow transplant. Of course, Ray was very discouraged to find out none of his siblings are a match so far with only one to go. But I reminded him that many people use unrelated donors and have complete cures, so he still has hope.
To make matters worse, we just found out this am that Ray's Dad is not doing well and is on full oxygen now to help him breathe. He is not eating well and struggling. We need to keep him in our prayers as well that he recovers. I know he has been so worried about Ray. He and his wife, Evelyn, came over this past weekend and we spent the afternoon with them; it was good for them to see Ray but thought he looked pretty weak. He was not feeling well then and was struggling with the fever on and off, but still a good visit. When I drove them home, I noticed his Dad's very heavy breathing and expressed concern to Ray. I'm not surprised he's now on oxygen. I just hope and pray he recovers and is back to feeling good again. His family needs him healthy and well!!
I will update more this weekend when I know that Ray is coming home. Thank you to all of you that have taken time to post a comment here and have emailed, FB, and called Ray these past few weeks. The encouragement and love you have all shown him at this difficult and scary time has really helped his spirits. Plesae continue to keep in touch with him and let him know you're thinking of him and praying for him when you get time out of your busy days and lives.
Love to all, Teri
