This was an email that Roni sent out on 3/19/2003. Due to technical difficulties, we are just now posting it on the web.
I know people have been wondering how Kevin is doing now that he's home from the hospital, and I'm sorry we haven't updated the blog.
Kevin is recovering, but the recovery has been slower, harder and more complicated than we anticipated. He bounced back so well from the surgery in Oct., that I think we both expected a somewhat slower version of that recovery from this bigger surgery. What both of us forgot to take into consideration was that in addition to recovering from a MAJOR surgery, he would also be recovering from the affects of a massive dose of very potent chemo.
The first week back Kevin had no appetite and no energy to eat. He was already underweight and couldn't afford to lose any more weight, but he was too lethargic to eat enough. So we visited the doctor to have them check his blood count. They found that he was still anemic from the chemo, even after the blood and shots he was given in the hospital. While still the Drs. office, he was given two Procrit-type shots for the anemia and they sent us home with cases of protein drinks to add to the stash I already had. Between the boost from the shots and taking a look at the nutrition numbers -- he was burning more calories each day than he was taking in -- he started downing enough protein drinks, peanut butter, etc. to begin getting back some energy. Last night, he even completed a series of physical therapy exercises, much to my relief. For awhile there, i was afraid he'd end up back in the hospital on intravenous nutrition.
Today I went with him to the doctor's office to have his sutures removed. We both expected it to be a slightly painful, but fairly short procedure. For reasons i won't bother to go into, it turned out to be a very painful long ordeal. Poor, poor kevin -- it was just awful. I got him home and pampered him as best I could. I pampered myself a bit while i was at it, I'd had a hard day emotionally.
While at the Drs. office, they took another blood test and were relieved that his platelet count, though still high, had come down significantly. It was only then I realized something had been up they hadn't told us. Turns out his platelet count had been "alarmingly" high, putting him at risk for blood clots. I still can't get over the fact that the doctors did not tell us at the time that they were alarmed -- though I know by now that they never do until after the fact. This is about the fifth time since October's ER visit that I have learned after the fact just how "at risk" Kevin has been. Maybe some people don't want to know, but I can't take one more, "I could have lost him last week and didn't even know it," type of experience. Today I looked the doctor in the eye (a very nice woman filling in for our oncologist, who is on vacation) and asked her, "Is there anything that you are alarmed about now, because if so, i want to know." She assured me that Kevin's blood counts, while still not in the normal range, were out of the "at risk" range and continuing to move in the right direction and that there was nothing else she was overly concerned about.
Even though removing the sutures was an ordeal, the doctor and nurse were wonderfully caring, patient and as gentle as they could be. They dressed the wound and asked us to come back tomorrow. The doctor just wants to check the sites where the stitches had been to make sure they don't show any signs of inflammation, then give him a clean dressing. They will also arrange to have a visiting nurse come on the weekend to change the dressing again and just make sure no infection is developing. They assured us this is just a precaution. They would hate for infection to occur over the weekend when the office is closed.
It's been hard coming down from the high of a better than expected prognosis to face a harder than expected recovery. Now we're working on readjusting our expectations so that we won't feel frustrated and disappointed about the phase we're in.
We just need to go back to the lesson of one day at a time we started learning in October, and look for the joy and victory that is there in each day. And we need to continue to ask for your prayers; that's hard for me, after having reported such a miraculous outcome. Those miracles happened, and the fact that kevin is still alive and has a favorable prognosis IS the result of answered prayers and series of miracles. But there's still a ways to go, and we still need your prayers for patience, strength and healing.
Thanks for reading. Sometimes we just feel like wining, and have to remind ourselves to be grateful. But when we remember all G-d has done, we ARE grateful and trust that He will continue to be near to us in what's left of this journey.
Thanks for listening and caring.
Love,
Roni
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