At .3, white blood counts are close to bottoming out, but Jimmy continues to do very well. The Kepivance has made him break out in a rash, and his skin is bright red all over, like he has a bad sunburn, but the good news, the GREAT news, is that it looks like he is going to dodge the oral and esophageal mucositis bullet, thanks to the Kepivance. The benefits from it are huge, compared to minor downsides, like skin rashes and cotton mouth.
Up until about two years ago, when Kepivance first came out, mouth and throat ulcers were a devastating side effect of high dose chemotherapy, a real nightmare. Patients who developed them often had to use a morphine pump just to swallow, and the nurses say their mouths were like raw hamburger. We are so thankful that this miraculous drug is available now, to save Jimmy from that awful experience. The AMD3100 that enabled us to harvest enough stem cells for the transplant was another little miracle.
Although there are blessedly no sores, the lining of Jimmy's mouth is very dry and thick, and he has no appetite, and is eating very little. Everyone says this is normal, and not to worry about it, but the inclination to nag has been overpowering at times, and I'm having to bite my tongue to keep from driving him and myself crazy. We have compromised on a couple of cans of Ensure, and juice.
The next few weeks are just a waiting game: barring any complications, we'll stay in this room and keep Jimmy safe from infection, and let those 4.6 million stem cells do their thing.
2 comments:
What great news! We have been holding our breaths for DAY 4 to come and go and all sounds well for which we are so thankful.. We were so glad to see that Jamey was there to make laps with his Dad. Little things become so important.. Please let us know if you have a mailing address at the hospital or apt. We think of you both constantly and don't know what we'd do without you daily blogs-Ellen, you are amazing--Yall hang in there!! Lots of Love, Pat and Barbara
We are here and always reading the blog. We are forever praying and it seems that so many of the prayers are heard and so many little miracles are coming you way. Jimmy's smile is still shinning through and Ellen, your courage is magnificent. When I read the positive parts of this race that Jimmy is having to run, the theme song from "Chariots of Fire" plays over and over in my head. We are cheering for both of you. Love, Geri and Wade
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