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.

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!

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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

About Joe.

Last Tuesday, as I was ending a brief and tumultuous affair with Mr. Stomach Flu, Joe was having trouble escaping the grasp of the evil temptress Ms. CMV. Although Mr. Ganciclovir tried time and time again to intervene on our behalf, Ms. CMV refused to let go (who could blame her?) We ended up firing Mr. Ganciclovir and hiring Mr. Foscarnet. It still took some time, but being meaner and tougher , Mr. Foscarnet with his twice a day interventions seems to have scared Ms. CMV into submission. As of this past Monday, Ms. CMV has gone into hiding. Just to be sure that she won’t be bothering Joe anymore, Mr. Foscarnet will continue to intervene twice a day. If Ms. CMV behaves tomorrow and Monday, then Mr. Foscarnet has agreed to only visit once a day for a week or so. As for me, my relationship with Mr. Stomach Flu is completely over. Affairs are bad. Falling under the spell of an evil temptress is also bad.

Meanwhile, Joe started to develop cold/flu symptoms. Last week, it was mostly some coughing and sniffling in the mornings and evenings. The coughing and sniffling steadily increased until Saturday evening when Joe started to feel chills. On Sunday, he felt a bit better, but his WBC had fallen to only 0.7k/mcL. The doctor wanted to be sure that Joe wasn’t developing pneumonia. He also wanted to confirm that Joe ‘s counts were dropping due to the CMV, and not something else. So on Sunday, Joe was admitted to the hospital. Joe was given all kinds of antibiotics to ensure he was armed against all kinds of infections. A chest x-ray showed no signs of pneumonia.

By Monday, Joe was feeling a bit better. A bone marrow biopsy was scheduled for the afternoon. Joe was introduced to the wonders of morphine for the very first time. It is a amazing that it was never offered before. It made the biopsy so much more pleasant. It still wasn’t fun of course. But it was far better than the extreme torture Joe has endured in the past. Tuesday was better yet, although the cough was worse. What made Tuesday even better was that the CMV results came back negative. By evening, the doctors decided that there was no reason for Joe to be in the hospital anymore. We left the hospital sometime after 9pm last night. Of course we still have to return every single day.

That brings us to today. It was a long day. Joe’s rash from GVHD now covers about 90% of his body. Many areas are starting to peel. Joe’s eyes have become puffy and dry. This is either due to the GVHD, or water retention from the steroids. The coughing continues. And since Joe has had his line in for nine weeks now, the area under and around his dressing has become very sensitive. It peels and bleeds, and the dressings start to look ratty before his weekly dressing changes. Still, Joe remains strong and says he doesn’t feel too bad. The first thing today was that one of Joe’s lumens was clogged. This is an easy fix with Retavase. Today however, it took longer than usual. More of a nuisance than anything else. Then Joe’s magnesium results took an unusually long time to return. Of course that was the one thing that Joe ended up needing more of, which further extended our day. Finally, Joe received a call from one of the doctors. The results from his bone marrow biopsy showed that the graft went from 98% to 89%. Still, there is no room for worrying around here. The doctors said that it is not uncommon to see fluctuations this early. Also, they are encouraged that this was caught early. Joe is at day 64, and his next biopsy originally was not going to be until day 100. The plan is that Joe will be getting five days of Vidaza starting tomorrow. Hopefully, this will scare Joe’s cells into going away, and his donor's cells will be able to fight harder. This time, the dosage of Vidaza will be lower, and it will be administered IV rather than with injections. No worries. Only prayers, hugs, and positive thoughts are welcome.

That concludes this update on Joe.

This past week has been long and challenging for many different reasons. I will explain more in detail another day. For now I just wanted to thank everyone for continued prayers, lest you feel abandoned.
Also, wanted to let everyone know that Joe was admitted to the hospital again yesterday and received bone marrow biopsy #6 today. Both were more precautionary than anything. Joe was experiencing cold/flu like symptoms and very low WBC, so the doctors wanted to make sure that he didn't develop pneumonia. Despite everything, Joe is still staying strong. Thanks again for your prayers.

98%!

We were back at the doctor's office today. Joe had his blood drawn, and his dressing change. Such excitement! But the really fun part was the visit with the doctor. After some chatting, he went to check on Joe's biopsy results. When the doctor returned, he announced that Joe is officially 98% female!!!!!! This means that he is 98% engrafted. Wonderful praise God news! Since that announcement, Joe just keeps hearing that he will likely become more feminine now as well as sweeter and more compassionate. Teehee. Joe of course is taking all the jokes like a man...or a woman. I don't know anymore. In any case, Joe's smile is as big as ever, and he continues to exude extreme positivity! Joe's biopsy also noted no more bad stuff, and all good stuff. Joe's celluarity, which is at 20-30% is still lower than the norm, which is around 60%. However, this is normal since he is only 38 days out from transplant. So all continues to go very, very well.

This evening, we had the pleasure of receiving a visit from some guys from our fellowship. It was so nice for Joe to hang out with some people outside of the family, and not over the phone! Thank you Geoff, Mammen, and Ray for stopping by!

Bone marrow biospy: a cautionary tale

Hey folks,

Greetings from Fiji! The weather is great. There's nothing like hanging out at the beach soaking in the rays. If you haven't done so, you have to indulge in the suckling pig. I am currently exploring the depths of and finding new meaning to the term "cabin fever". My life right now should be titled a la Dr. Seuss "Oh the Places You'll Go! (in your HEAD)." Actually, it's not quite that bad. Through the miracle of books, TV, and the internet, I am becoming a world traveler at fractions of the cost of actual traveling.

Thanks to the awesome power of steroids, I get to experience mild euphoria, greatly improved appetite, and insomnia. So this gives me loads of time to think. Lest you think that this whole transplant process as been one honky dory moonlit beach walk through a bed of roses (or something like that), I wanted to ponder the bone marrow biopsy, since I still have the residual soreness from a few days ago. I want you to picture lying on a beach in the Caribbean on pristine white sand under the shade of an umbrella overlooking impossibly blue seas and crystal clear skies. You are, of course, sipping on a daiquiri while thumbing through some trashy, inconsequential novel. Now, picture the exact opposite of that. That's what getting a bone marrow biopsy is like. I think at most centers, they sedate children when they do these biopsies. But, oh no, not so for the "adults". I'm saying, where's the love man?! Slip me some of the juice! I'm pretty sure that Hollywood movie producers somehow slipped into the oncology exam rooms and parlayed their knowledge of bone marrow biopsy into mega-blockbuster hits like Saw, Saw II, Saw III, the Texas Chainsaw Massacres. But really... it's not that bad. :) But, like the title, this a cautionary tale, so the next time your doctor mentions in passing "We'll probably need a bone marrow biopsy" in the same tone of voice as if he were saying "Don't forget to get your parking validated on the way out", be aware. Be very aware...

That is my random rambling of the day. I continue to do very well. Of course, I am anxious to find out the biopsy results. We should have some info this coming week. This weekend had been very nice so far. Karen and I were able to spend time with my parents in Monroeville for dinner last night, and my in-laws came and had lunch with us this afternoon. Always good to spend time with family.

As always, thank you all for the support, love, and prayers. And do me a favor, go rent Saw this weekend. (I've actually never seen it).

God's love,
Joe

Day 30!!

Hey y’all,

I’m back on the blog for another one of Joe’s ramblings. Karen has been doing such an amazing job with the blog. She seems to have a knack for summarizing complicated series of events very perfectly.

Well, I did it! I’ve made it to the first major milestone Day 30 without any serious problems. Of course, the occasion was marked with having to get my 5^th bone marrow biopsy (but who’s counting?!) This will be the first direct objective data on how my body is responding, so let’s all pray for excellent results. It’s weird… internally my body is waging a war and I’m actually rooting for my guys to lose.

So to commemorate the occasion, Karen and I have decided to take a two week trip to Fiji, after which we will re-dedicate our efforts to my healing. We leave tomorrow morning. Of course, this scenario only plays in my head. Fortunately, I’ve got quite a few friends who we shall refer to as Bus, Big Ben, Slash, Chin, and Taz (strangely quiet Polynesian fellow) who come around just to say hey. (Sadly, also in my head) On the up side, I’m told I am permitted to have a few visitors to the house as long as they have no visible sores and have been decontaminated, disinfected, deloused, and preferably autoclaved x2. Apparently, even though my white counts are good, I’m still on so many immunosuppressive drugs that I’ve been told to stay away from public areas for a good many more months. Thank goodness for the internet.

Each day, I am feeling stronger and overall better. It’s seems like I’m constantly trading one set of minor problems for other set, but so far, no major complications. Praise God! I will tell you that I have new found appreciation for cancer patients undergoing treatments and anybody else with chronic illness. It’s a true test of strength, courage, perseverance, patience, restraint, faith, and anything else you can think of. There are so many opportunity costs with waiting in the lobby, waiting for results, waiting to see the doctor. The hospital literally becomes your second home.

Curiously, throughout this whole process, I think that my faith has strengthened. When I was admitted in the hospital in June, I was basically terrified and suffered two truly frightening panic attacks in which I thought I was dying. After the second one, I believe that God spoke to me, not in words, but by lifting a great weight off my shoulders. It’s then that I knew it wasn’t my time to go. And I haven’t looked back since. God has a plan. I’m still not sure what my role is, but I’m figuring it out. I know that He watches over me and my family because He has provided me with an excellent team of doctors and nurses and loads of supporters. Like I said before, I believe that most people are truly good. I think I received over 100 e-cards this last visit at the hospital (a new record) and many were from people I know only peripherally. I even got one from a brief acquaintance of ours from the Netherlands! And that’s not including all the countless other cards and gifts we’ve received. Thank you so much!

These days, I continue to do a lot of reading (when I’m not dozing), watching TV / movies, playing Scrabble with Karen, and basically just trying to make the best of the situation. It’s pretty easy staying positive when you’ve got a wife like mine. She’ll instantly cheer up any room. Like one of my colleagues said, this isn’t just positivity, it’s EXTREME positivity. Well, be on the outlook for postcards from Fiji. We’ll talk to you when we get back.

Joe

Happy Super Bowl Sunday!!!!!

Go COLTS!!!!!! I'm so happy for the team. And I'm so happy I wasn't out in that rain. :) Joe and I had a nice quiet Super Bowl Sunday, perched on our big red couch, in front of our big television. Next year, we should be back to partying!

Joe is still doing well, despite still being itchy. The steroids definitely do help. But the steroids also make Joe loopy! Before the steroids, Joe was sleeping at least 16 hours a day. The transplant, drugs, and aftermath of the chemo really made him tired. But now that Joe is taking some steroids, he is finding himself awake until four in the morning! He does sleep well once he is able to fall asleep. His schedule is just a little out of whack. Hopefully, he won't need to be on the steroids for very long. We shall see.

Tomorrow we'll be going back to see the doctor. Thursday will make Day 30 of the transplant process. Joe should be getting a bone marrow biopsy then to see where he is in terms of engrafting. Speaking of bone marrow biopsy, I gained newfound respect for Joe's strength and pain tolerance. While at the doctor's on Friday, we were apparently next door to a young gentleman getting a bone marrow biopsy. He was screaming in pain, and it just broke my heart. This week will be Joe's 5th bone marrow biopsy. I can not even imagine. Joe did admit that in his experience as a doctor, women are the strongest. (I know you women aren't surprised!) Young, big, burly men apparently turn into big babies when encountering the least bit of pain. All I know is that I'm really glad that Joe doesn't scream in agony during his biopsies, I wouldn't be able to handle it! He's tough.

Friday was a very special day! Our dear friends Van & Rune are now the proud parents of their second child - a baby boy!!!!!!!! Congratulations!

Monday is a very special day. My beautiful and sweet 3rd Auntie will be celebrating the anniversary of her birth! She has been so amazing in loving us and supporting us, even though she has yet to meet Joe.
Our dear friend Jomei is also celebrating her birthday on Monday!!!!! Yay!
Happy Birthday ladies. :)

Home Sweet Home.

We are HOME! Joe has been enjoying his tv, his couch, his bed, and his shower. There is no doubt that we were extremely well taken care of at Hotel Mom & Dad. Joe's parents were absolute angels and helped us more than we could ever hope or ask. But it sure does feel good to be back home. My family and Joe's parents all stopped by in the afternoon to make sure we were okay, and to make sure that our refrigerator was stocked to maximum capacity. We are very loved.

Our visit to the hospital this morning provided us with very good news, again! Joe's WBC is now 2700. Jumping, jumping, jumping. His platelets rose to 72, and his RBC went up to 10.6. We are quite pleased with those numbers. Twelve more days until Day 30 and the big bone marrow biopsy.

Joe and I wanted to share some photos from these past few weeks. Rest assured that every single one, good and bad (okay, not so bad!), has been pre-approved by Joe. It is really amazing how big his smile is in so many of the photos. He's a beautiful person with beautiful character. You can view the photos by clicking on the following link...

Joe's Transplant Process.










As for the photos of the cute little guy I've posted... Well, that's my little brother Victor. And on the 29th, he is turning TWENTY-ONE!!!!!! Yup, he's all grown up now. He also happens to be an extremely bright goody-two-shoes. So it is highly unlikely that he will be taking advantage of any of the things that are now legal for him. Maybe because in every card that he has ever received from us, Joe has written, "Just Say NO." :)

HAPPY BIRTHDAY VICTOR!!!!!!

The beginning.

I am sitting in front of my computer knowing that I need to put down my thoughts, but I'm unsure of where to start. This must be something many bloggers go through, right? Well, the main purpose of this blog is to keep those we love updated on my dear Joseph. Keep in mind, when I post it will be the "Laywife's version" of what's going on. We have received a lot of scary news lately, but the one thing that has kept us positive is knowing that we are SO VERY blessed with THE BEST network of friends and family ever. We truly feel God's love through each one of our friends and family members. So together we will be strong and we will fight and we will overcome.

From the beginning. Joe has had the kind of crazy life that radiology residents have (yeah yeah, we hear you residents in other fields snickering.) For a six week period beginning the end of February and ending in April Joe attended AFIP in Maryland. On April 2, we celebrated our one year anniversary! At the end of April we went on a cruise and attended a wedding on the Cayman Islands. In May, Joe spent a month at CHOP in Philadelphia. When he returned we attended another wedding in town then went off to San Diego for a Nuclear Medicine Conference.

It was no surprise that Joe felt tired. Doctors seem to get used to being tired, and plus he was traveling so much. In San Diego, Joe developed a gum infection. It was unusual and uncomfortable, but still didn't clue us in to what was to come. This led to his appetite decreasing, and Joe ended up losing about 10 pounds. One evening Joe's mom remarked that he was looking pale. Again, it seemed to be possibly related to being tired from traveling. But then, Joe started to feel his heart beating faster when he was just sitting still...and he had a bit of a fever one night. So just to be safe, he decided to get his blood drawn on Friday, June 23. He was supposed to come home and say that his results showed he was a hypochondriac. Or maybe even a thyroid problem. Instead, Friday morning, Joe discovered that all of his cell lines were low. He was immediately sent to get a bone marrow biopsy. Meanwhile, I was on a school bus with a client traveling far from my car. Joe managed to reach me before his biopsy, and we were both a ball of nerves.

I rushed home right after work and Joe updated me on his crazy day. We had both been helping out with Vacation Bible School (VBS) at our church but I called Vince and he kindly took over my station. Then it was a waiting game. By Friday evening we got the results...Joe had Acute Myeloid Leukemia. We went through every emotion. Our quote for the evening was, "Dear Leukemia, We're gonna beat ya sucka!" Our families got together that evening. It was nice to feel the love and support.

Saturday morning, Joe went to the hospital for a blood transfusion. We went to talk to Dr. T. beforehand. She was such a comfort. We also ran into Myra, Steve, and Shalin. We were now armed with some much needed hugs! The transfusion was a long process, but all seemed to go well. David so kindly brought over some barley, potatoes, and chicken. Yum! Joe's parents also had a bag of goodies, and went out to bring us more. Saturday evening we hoped to see some friends. But Joe developed a slight fever, so we decided to keep him home. Joe's parents ended up spending the night. They even stocked our fridge, cleaned our basement and did yoga with us. Today's quote was "Dear Leukemia. GO AWAY!" Our song was, "God is bigger than Leukemia. He's bigger than Godzilla or the monsters on T.V..." (adapted from the VeggieTales. :) )

Sunday morning, I gave everyone a slight scare. Joe's mom made this really yummy homemade soybean milk...but unfortunately, I developed an allergy to it. I got a rash around my mouth, started sweating, got shortness of breath, and then...my breakfast ended up in the toilet. Fortunately, I was fine after that. :) That evening, Joe's parents decided to come spend the night again. They taught us how to play Mahjong. It was a lot of fun and helped us all to relax. I ended up being the ultimate loser, and Joe caught everyone by surprise at the end and became the winner of the evening!!!!! This evening's song was "My God is so great, so strong and so mighty there's nothing my God can not do...for Joe." Which is funny, because Nancy and Evan sang this very song to us Monday evening!

Monday morning, we met with Joe's doctor at West Penn. He was very confident that Joe had Acute Myeloid Leukemia of the M6 variety. Very scary news to take in. There were still some more results coming in though. So we hung out at the hospital waiting for those results, gathering everything we could for a second opinion in Boston, and talking to people like Lilly and Dr. B to get them up to date and see what we needed to do. We also got to see Connie in the cafe which was a lovely surprise! By the end of the day, there was a little bit of discussion about whether Joe had a high-risk Myelodysplastic Syndrome or AML. But the final diagnosis remained as AML. Before leaving the hospital, Joe had a platelet transfusion to prepare him for the trip to Boston. We talked to Greg who is the best neighbor ever, and well...he's the best neighbor ever.

Tuesday morning we drove to Joe's parents house. They are real troopers. Joe's father drove us all the way to Boston. It was a LONG drive, and not so comfortable for Joe. It was great to see Albert when we got to Boston though. We continued to do our best to stay positive and just enjoy each others company.

Wednesday afternoon was our appointment for a second diagnosis. We saw Channing who helped arrange the appointment for Joe. Joe's family has known Channing forever. He has been so helpful. Joe had his blood drawn again. By the end of this day, the doctor said that he could not look Joe in the eye and give him a final diagnosis because the slides sent from West Penn just were clumpy or thick. So Joe needed to get a second Bone Marrow Biopsy. Poor guy.

Thursday, we flew home so that Joe didn't have to suffer such a long trip. We had handy dandy masks for Joe to wear on the plane. Joe's parents drove back to PGH. *whew* Julie so kindly picked us up from the airport. It was a treat to spend the ride home from the airport home with her - she's so positive and cheery! In the evening we got to hang out with my parents! They have been so encouraging, which is wonderful.

Friday was a waiting game. Joe's parents were so generous and sweet and arranged for our air ducts to be cleaned. They also helped with cleaning around the house and made sure we were fed. Finally Joe got to speak with the doctor in Boston. He said that he was positive that Joe did NOT have AML. It wasn't even a discussion. Everything was consistent with Joe having High-Grade or High-Risk MDS. Initially, it seemed this might be a lesser of two evils. But turns out, it really isn't. PGH doc and Boston doc had a discussion and they did agree that if Joe's brother Albert is a match, they want Joe to go straight to having a bone marrow transplant. Scary stuff. But again. We're STAYING POSITIVE! Sunday Joe goes back to the hospital for another blood draw.

Saturday we took it easy and updated some people over the phone. Joe's friend Jay is a hem-onc dude so he has been nothing but wonderful in helping Joe and the rest of us understand what's going on and what to expect. Joe has been told he can see some people as long as he is careful. So we had some pizza for dinner and then went to see a small group of church friends - Pastor Jim, Kathy, Vince (who was supposed to be partying elsewhere?), TK, and host Eric. We also got to see Patrick on our way out the door. Everyone was so good about washing their hands, and they all sat really far away from Joe and didn't touch him. It was so great for Joe to see some friends though. Everybody made sure he had a huge smile on his face with funny stories...until the end when things got a bit teary. I keep telling people that if they make Joe cry, I'm gonna beat them up! Nobody listens though. :)