We could really use some prayer right about now...

This past week, we really felt like we had rounded a corner in our journey. Joe was feeling better, the rash was fading to nothingness, the sun was shining. All we needed was for Joe's counts to start moving in the proper direction. Well, today we learned that if we did round a corner - it is a detour, and we've hit a major pothole. Fortunately, we are from the 'Burgh. And if there is anything that people from the 'Burgh can handle, it is detours and potholes (and a weird new mascot...). Nothing can stop us from reaching our intended destination.

Joe started off the day with a blood draw and a dose of Pentamidine. The results from the blood draw showed that his WBC is still low and his platelets are creeping down. His hemoglobin is still holding steady. Later in the morning we had an appointment with the doctor. We were just doing our thing, grumbling about the long wait, talkin' about the weather, remarking on Joe's peach fuzz five o'clock shadow, and doing some reading. Then we received some results from the bone marrow biopsy Joe had on Tuesday. It showed that 30% of Joe's cells display chromosome abnormalities - those abnormalities that put us in this predicament in the first place. The FISH for donor cells has not come back yet. But if we assume that the cells with abnormalities are Joe's, and the cells without are any combination of Joe and the donor, then Joe's marrow is now no more than 70% donor. This was not the news that we wanted to hear today. It just seems impossible that such a drastic change could occur in two weeks. The doctor is concerned, as one should be in this situation, but NOT worried. Remember, Pittsburghers know how to navigate detours and potholes. Joe was started on another round of Vidaza today. It worked really well the first time his graft dropped, so there are high hopes that it will do the trick again this time. To further discourage Joe's cells from getting out of control and to encourage the donor cells to fight harder since they are still in the majority, Joe's steroids have been tapered even more, and he has been completely taken off of one of his immunosuppresants. Please pray that the donor cells take over once and for all, and that Joe's GVHD doesn't flare uncontrollably.

Amazingly enough, even after receiving this news Joe and I seem to be handling it very well (if I do say so myself). We're a little more quiet today, but far from mopey and not quite discouraged. I can't speak for Joe (although from our conversations and our day, I can say that I continue to be amazed by his strength), but as for me I feel this strange peace about everything. My mind and my heart seem unable to waver from being completely positive that everything will be fine and that God will provide Joe with complete healing. Some might say that I'm in denial, or it hasn't hit me yet, or I'm being a bit naive. I don't think so. I can't think so. This whole MDS thing has been horrible. Yet, so many positive and wonderful things have blossomed from the muck and mire that is MDS. Joe and I have grown in so many ways. Joe in particular has developed unbelievable strength and grace in dealing with the ups and downs of his treatment. Then there is the support from family and friends, the stories of people inspired by Joe's story, and the people who have stepped up and registered to be donors, or donated cord blood. I think that there are a lot more wonderful things in store for us...not the least of which is complete healing for Joe. Currently, I refuse to believe anything else.

Here's my theme song for the day.

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way
He will make a way

By a roadway in the wilderness
He'll lead me
And rivers in the desert will I see
Heaven and earth will fade
But His word will still remain
He will do something new today.

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!

~~~
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

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