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.

Happy Groundhog's Day!

We had a long day at the hospital. But as Joe says, having two blissful days off made it all worth it. Joe seems to be developing some early signs of GVHD. Some of it is natural and necessary. We just need to keep a close watch on everything to make sure it doesn't get too serious. Joe's symptoms started with a rash that looked like dry skin. He also had itchiness around his eyes. This morning the rash appeared more pronounced, mostly on his upper body, and the area around his eyes was very red. The itchiness became unbearable. At the hospital, we waited an eternity. Then Joe had his blood drawn. Then we waited another eternity. We saw the doctor. Joe was prescribed some steroids for the itchiness. The doctor also requested a skin biopsy to confirm the nature of the rash. Yup, we waited another eternity for the skin biopsy to be done. It went smoothly. Hopefully it heals more quickly than Joe's last skin biopsy. The last time, it was on a pressure spot, so the area took a very long time to heal.

The good news is that Joe's WBC is now at 4300! His Hemoglobin is 11.0. Lookin' good, lookin' good! Since we were already at the hospital and Joe's magnesium was bordering on low, we went up to Short Stay so Joe could get an IV. We were at the hospital for a good 7 hours today. But provided that Joe's rash behaves, we have the weekend off. :)

Besides being frustrated by the itchiness and more drugs, Joe is in good spirits. He is quick to say this is no fun at all. But he is also quick to mention that he knows he has been blessed - from finding a donor within 6 months to doing as well as can be expected pre and post-transplant. Joe is amazing!

Discovered an article on Erica's website, and I thought it was worth sharing.
Too Young for This: Facing Cancer Under 40
New York Times, January 30, 2007

Thank you Pei-chen for the sweet gift. You are always so considerate. Hope we can see you again soon!

Just a very quick update. Yesterday, a "mean fellow" pretty much told Joe that his rash could be Leukemia affecting his skin...which would mean that he would not respond as well to chemo. Uhm...he had just gotten a skin biopsy with no answers yet, so why freak him out like that?

Well, PRAISE GOD! Because today we found out it is actually a weird drug reaction, which is most definitely the least of all evils. Also, he had the inflammation of his gums checked out and for now he just needs to gargle with a special mouthwash. Tomorrow he may see the oral surgeon here for possible irrigation and debriding of the area.

Joe was mostly smiling today, which is GOOD! Especially considering he didn't sleep so well last night. He spiked another high fever. I know that it is so rough being in the hospital and going through all that he is going through. I'm so very proud of him though for trying to stay positive.

Joe's mom made him some goodies for lunch, which he was able to eat. And he ate most of his hospital dinner too. Yippee. My parents were around today too. My mom made Joe some cake, and he loved that.

That's all for now. I can't keep my eyes open. But as always thank you all for your wonderful messages and words of cheer! Sara and Mike M. sent balloons which really brighten up the room. And Lisa, who I must call tomorrow has been amazing in using her connections to plan an upcoming bone marrow drive! Sometime I'll have to make a list of thank you's. It would seriously be miles long, I think. We love ALL OF YOU!