Prayer

It has been an extremely challenging week. More and more, this whole journey feels like an extreme video game. Every time Joe overcomes the evils of one level, he discovers that there is another level with bigger and tougher evils. We just keep waiting for that day when we learn that Joe has beat every single level and won the whole game!

Initially we were happy, because Joe finished chemo this week, and the cultures for VRE were all coming up negative. (Still a praise.)

Unfortunately, Joe developed some curious red spots. He started with just two, and we didn't think much of it. Then a few more spots appeared, and Joe's legs and arms were feeling a bit sore. We thought that maybe it was from the chemotherapy. We kept the doctors informed. The spots continued to increase, and the soreness in Joe's legs and arms turned into pain. Joe felt as though he was feeling the after effects of an EXTREME workout...multiplied by a hundred. It got to the point that Joe was unable to stand on his own.

A skin biopsy was done. The doctors suspected a fungal infection and braced themselves for the results. Yesterday morning, the infectious disease doctor told us that Joe did in fact have a fungal infection. He also mentioned that it might possibly be Mucormycosis. Fortunately, at the time we were blissfully ignorant about what this diagnosis would mean. We later learned that that diagnosis would be just about the worst news possible. So bad in fact that the person who relayed the message to Joe's primary hem-onc doctor was in tears. Joe had already been on the drug (posaconazole) that is used to treat mucormycosis. It is a very new drug which gives a lot of hope to patients now. But since Joe was already on it, there wouldn't be much left to do since an infection would mean resistance was developed to the drug. Like I mentioned already, it is a good thing we were blissfully unaware.

Less than an hour later, Joe's primary hem-onc doctor informed us that Joe did not have a mocormycosis infection, he had aspergillus. This was not good news, or even better news. But it was less bad news. This is treatable. It won't be easy...but what part of leukemia is easy? The wonderful news is that Joe is a fighter. He has been through all kinds of challenges, including the evil lung challenge, and overcome every single one. So a plan was formed. Joe's treatment will have five parts.

1. Voriconazole - Joe was taken off the posaconzole, which isn't so effective against aspergillus and switched to voriconazole which is effective. We have since learned that this drug can cause some hallucinations, which explains why Joe was conversing with people in his sleep all night.

2. Abelcet (amphotericin) - This drug has been nicknamed amphoterrible. It causes chills, which Joe experienced yesterday. Today, Joe was premedicated before the getting the Abelcet and avoided the chills. Yay!

3. Granulocyte Infusion Therapy - This is basically an infusion of white cells. It is not a very common procedure and seems to be reserved for cases like Joe's current situation in which he has a serious fungal infection and virtually no white blood cells of his own to fight off the infection. Apparently there is a data base of donors, and Joe was matched with someone and received his first bag of cells today.

4. GM-CSF (Leukine) - This is kind of like Neupogen which Joe used to get to increase his neutrophil count. Instead of an injection, this runs as an IV over 4 hours.

5. Prayer - Yup, this prescription came straight from the doctor. Fortunately, all of our readers and even our non-readers have proved to be really good at praying.

Joe will be receiving all of the above every day. (We are convinced that it is all starting to work already.) Next week, Joe will be getting bone marrow biopsy #12. This biopsy is super duper important and will determine much of what follows. So please pray for this aspergillus to be taken care of and for perfect bone marrow results!!!!!

Joe is still in a lot of pain. He is receiving pain meds around the clock after a consult with a really sweet and amazing doctor. Joe is able to move a little bit more than before which is good. The drugs really making him woozy though. When you talk to Joe you immediately realize that his head is super clear, but he sounds like he's drunk! Joe also says that he feels that he knows what it is like to have narcolepsy. He keep falling asleep at random moments. Breakfast this morning was a bit messy as Joe would fall asleep while stirring his hot chocolate or eating his toast. It all gives us something to laugh about!

We had a bit of a good cry yesterday morning, and now we are once again full of hope, faith, and strength. Joe is absolutely amazing. All the doctors and nurses keep remarking about how well he has been handling everything. Stubbornly optimistic. That's us. God is good...all the time.

And so the journey continues...

Yesterday, the bacteria found in Joe's blood stream was determined to be VRE (vancomycin-resistant enterococcus) and Staphylococcus epidermidis. Traditionally, VRE has been difficult to treat and can be really dangerous in patients who are immuno-compromised. Fortunately, times have changed and lots of advancements have been made. There are now a few drugs that can be used to effectively treat VRE. Joe was put on daptomycin a couple days ago with the thought that he probably had VRE. Dapto is also effective for treating the staph. So far Joe's fevers have been trending down, so it seems that he is responding well to the drug.

Also yesterday, Joe's Pittsburgh docs spoke with his assigned Minnesota doc. Looking at the 5% of "stuff" from the bone marrow biopsy, blasts were still present. Since Minnesota will be responsible for Joe's next transplant, Joe's doctors here wanted to consult with them about what to do next so that there would be no chance of compromising Joe's opportunity to go up there. The doctor in Minnesota was really encouraged by Joe's response to the first round of induction chemo. He also said he would be more comfortable if everything was wiped out. So Joe will be getting another round of chemo. The same drugs will be used, since Joe did so well the first time, but this time it will be a "5+2" regimen rather than a "7+3."

So, Joe will not be getting kicked out any time soon. Poor guy. The plan is to get rid of the bacterica in the blood stream first. Cultures from yesterday came back negative. So if another set of cultures returns negative, Joe could begin chemo as soon as tomorrow.

Yesterday was a really overwhelming day as we were getting bit and pieces of information here and there. Joe needed blood and platelet transfusions. He was a bit short of breath in the morning and needed to use some oxygen for a few hours. Joe had chills for about 20 minutes after his first bag of platelets. We got information about the bacteria in the bloodstream. All kinds of tests were ordered. It was just a crazy day. Fortunately, by afternoon we received a lot of answers and a plan for the next week. After some frustration, we're feeling more renewed and ready to continue fighting. But you know, I REALLY wish that Joe could just get out of the hospital and be free! He has been through so very much. Being a patient is so tough. Besides all of the obvious sacrifices, you sacrifice your privacy and your dignity. It is really a crazy life. I admire Joe and all the other people going through similar things so very much.

Here's some happy news. Joe's brother is visiting for the weekend. It is a short visit, but so good for both of them! Also, two of Joe's uncles and an aunt are visiting. That has been a real treat.

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Thank you Evonne, Thomas, & Leah for the card!
Thank you Dr. & Mrs. Borst for the postcard! It was so fun to hear about your travels.