Day + 106

Today, I present to you a photo of Joe and his college roommate Jim. It was taken on our wedding day. Jim is really tall. And not that it matters, but that isn't what he wore to the wedding. Jim was just making sure he was in the right place. Speaking of Jim, Joe got a call from him four days into the Marrow Trek. Jim and Jesse are doing well, although they are starting to get some blisters on their feet. When Joe heard from them, they still had a good 3,000 miles to go...but they are still super excited. Now the dogs...they are excited too, but they are also falling asleep every time Jim and Jesse pause for more than half a second. The trail and the heat may be a bit much for them, so the dogs are going home for now. Meanwhile, Jim and Jesse seem to be collecting some crazy stories...already. Like having a small town librarian call the cops on them. You would be nervous too if two big guys with four days of chin stubble, who smelled like they had been hiking and sweating for a hundred miles in warm weather were sitting in your library. Fortunately, the cops were very kind...

Joe is doing very well. Monday's blood draw showed that he is now CMV negative. YAY!!!!!!! This means just one more dose of Cidofovir, which will take place next week. The down side is that Joe's WBC is still very low (yup, he had another filgrastim injection). Yesterday, Joe had bone marrow biopsy #7 to ensure that everything is as it should be in his marrow. We are praying hard that the results are good. Joe has been feeling a bit better each day now so it only makes sense that everything else follows. Amazingly enough, Joe had his biopsy without any morphine. Is he brave? Is he crazy? Is he stupid? Maybe a bit of all three? I don't know. But the fortunate thing is that the nurse practitioner who did the biopsy did a wonderful job. Out of the six different people who have had the privilege of doing a bone marrow biopsy on Joe, she ranked in the top two...oh, but one of the six was eliminated from the ranking since morphine was involved. :)

Another thing is that the Mepron (the yellow paint stuff) and Joe's stomach just were not agreeing. Joe has lost a lot of sleep in the last couple weeks because the Mepron has caused a lot of discomfort and rumbling and such. So...Joe is going back to the monthly Pentamidine. We are trusting that the techs who administer it are fully aware of the proper methods now. Please pray that this is true!

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Thank you Sheena for bringing us food. It was all so yummy. You better be eating well too!!!!!

Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.
~Psalm 103:2-4

99%

Three lovely photos have been posted for your entertainment. First, we have Joe smiling because his mind is far away from the Mepron he will soon be taking. The second is a photo of the Mepron. Didn't I tell you that it looks like bright yellow paint? The third photo needs little or no explanation - but it is Joe's reaction to taking Mepron. Apparently though, things could be worse. Poor Baby Livi has to take a medication that smells like skunk.

We went to see the doctor yesterday. Joe's rash is definitely looking better and better each day. He is not shedding as much skin, and his skin is not as red. Joe was given permission to taper his steroids slightly. Today was the first day of the taper; so far so good.

The results from the chimerism test earlier in the week show that Joe is 99% female. Yay! Those donor cells are doing just what they are supposed to be doing. The fact that they are doing what they are supposed to be doing largely contributes to why Joe's rash was so ugly. High price to pay, but in the end it should all prove to have been worth it.


Joe got another Neupogen shot on Friday because his WBC are still stubbornly low. The positive CMV result isn't helping either. Praise God though, because Joe is feeling well overall. Monday we return to the hospital. Mostly just a routine check. Thursday will be round two of the Cidofovir.
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I keep forgetting...thank you Susan H. for the lovely card! It was really fun to read.

Great is the Lord, and most worthy of praise, in city of our God, his holy mountain. ~Psalm 48:1

The evil temptress is back...

Today we learned that the evil temptress Ms. CMV is back. We were prepared to see her again, but we were really hoping she would stay away. Oh well, as the doctor said, "don't be discouraged. This is treatable." Since Mr. Ganciclovir proved ineffective last time, and Mr. Foscarnet made Joe pay heftily to get rid of Ms. CMV, Mr. Cidofovir is intervening this time. I like to call him Mr. Sudokuvir...but anyway...

We will go to the hospital tomorrow. Joe will receive fluids for three hours. Cidofovir will be infused over 2 hours. Then there will be an additional two hours of something, but we're not so clear on what yet. :) I will have to report back! Cidofovir only needs to be given once a week, and apparently the very first treatment is much longer than the ones that follow. So tomorrow is a long day, but next Thursday should be a bit better. So far the plan is two Thursdays of Cidofovir, then a week off, and another Thursday of Cidofovir. Hopefully by then Joe will test negative for CMV. If not, he'll continue to get Cidofovir every other week.

Today Joe tried something new. It's called Mepron. It looks like bright yellow paint, or maybe French's classic yellow mustard. Apparently it tastes like fruity plastic. It is used to prevent pneumonia. Originally Joe was given Bactrim when his counts started to rise post-transplant. When Joe's counts started to drop, he was taken off the Bactrim and given a Pentamidine, which is inhaled. The Pentamidine is a monthly treatment. Unfortunately, it was discovered that those in the hospital responsible for administering Pentamidine weren't exactly doing it correctly. This understandably made Joe's doctor nervous. So Joe was given a prescription for Mepron. You have to take it once daily, and it is much worse than swallowing pills. Joe is convinced the doctors enjoy coming up with new ways to torture him! However, the upside is that the drug comes with these directions: TAKE THIS MEDICINE WITH MEALS. If possible, include foods with a high fat content (whole milk, cheese, ice cream, eggs, fried foods). Joe is especially happy to have a proper excuse to eat ice cream!

Some more good news. Joe's rash looks significantly better today, and he isn't shedding as much skin either. I'm praying he is able to get a good night sleep, since tomorrow will be along day. Joe's parents kindly brought over an oven-ready meal for us so that we don't have to worry about dinner tomorrow.

He will wipe away every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.
~Revelation 21:4