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

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.
~~~
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

Day +93

Joe received his first dose of Cidofovir today. This means I can share more factual information on how it is administered, unlike yesterday. :) Joe was given fluid (Saline) over three hours, and some Probenecid. After that, the Cidofovir ran over one hour. Then Joe was given more fluid over two hours. Then some more Probenecid...and then he was to take one more dose of Probenecid six hours after the second dose. Such a complicated drug. And unlike what we thought yesterday, each Thursday will be the same routine. It wasn't so bad - says me, the girl who wasn't hooked up to an IV pole for six hours. The huge blessing of today was that Joe's rash looked even better than it did yesterday, and it was even less itchy. This made hanging out at the hospital less miserable. Coming out from the agony of constant itchy, dry, rashy skin makes everything seem more pleasant! Joe definitely is looking brighter and has renewed energy to fight this stupid MDS stuff.

Tomorrow we go back to the BMT office for another blood draw and rash assessment. We're hoping for a taper in the steroids soon. As mentioned before, a high dose of steroids makes it very difficult to treat CMV. A high dose of steroids can also mask infection by inhibiting the ability to get a fever. Infection is increased when WBC (and neutrophils and lymphocytes) are low as they have been with Joe. Surely Joe won't develop any infections, but we need to be prepared for the possibility so we know what to look for.

Thank you for continued prayers, good vibes, virtual germ-free hugs and kisses, and warm fuzzies!

~~~~
Happy happy birthday Rachel U. We love you!!!!!!

The Lord you God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.
~Zephaniah 3:15

How sweet it is...

First, the not so fun stuff. Joe's rash became increasingly worse over the weekend. Yesterday, his body was covered with red patches and spots, and his skin was flaking more than ever. Joe actually looked like he had a white beard because the peeling was so bad. Several times a day Joe goes through the ritual of slathering himself with lotion. I get the privilege of getting his back. Over the weekend, we resorted to good old petroleum jelly. It is working better than any lotion, but the effect still wears off within a few hours. It is really amazing. If I used a quarter of the amount Joe uses on myself, I'd look like an oil slick and then completely break out. Or, I'd look like a wannabe body builder. Last night it became pretty unbearable. Joe contacted the doctor who further increased Joe's steroids. Again, the increase is hopefully very temporary. Please pray that as Joe's GVHD is treated that he continues to test negative for CMV! (Friday's draw did test negative. Yay!) The increase did seem to help. Joe's rash was bearable today.

Joe's WBC continues to be low. We're hoping to see it go up by the end of the week. Joe got a Neupogen (filgrastim) shot today. That usually boosts his WBC for a couple days. Joe's platelets are creeping up ever so slowly. I consider that a good sign. The hemorrhagic cystitis is much better now, and the edema in his feet and ankle area seems to be better too.

We were not scheduled to go back to the hospital until Thursday. But then the doctors decided Wednesday would be better...and then they changed their minds again, so we'll be back tomorrow. That is okay. We did have the whole weekend away from the hospital!

Now for the more fun part. Our weekend was lovely. We got to spend some time with Joe's parents on Friday evening. Then on Saturday my parents and my brother joined us for lunch. It is always nice to spend time with our families. Saturday night, Joe was glued to the TV, thanks to college basketball.

On Sunday, Joe slept the day away. He was not awake for more than 30 minutes at a time until 6:30pm. Poor babe was absolutely exhausted. He finally woke up and promised to stay awake for at least three hours. Later in the evening, the doorbell rang. I was absolutely shocked to discover six of our friends from fellowship grinning from ear to ear outside our door. They brought us a beautiful cake. They didn't even complain when we made them stay huddled by the door since Joe's counts are still low. It was a great surprise to see them, and Joe was thrilled to see some familiar faces outside of the family. By this time, Joe was a bit wired from his steroids, and the two of us ended up reminiscing about our wedding day and other fun things until close to 3am. Ooops. That's okay, when we got to the hospital, we discovered that the doctor forgot to write orders for Joe to go to short stay, so we had to wait extra long. Joe got a little cat nap in the waiting room!

Today we did sappy squishy anniversary things like look at all of our photos and videos, and eat cake! The shirt Joe wore was my gift to him. It makes me smile!

Congratulations to Michael and Judy who got married on Saturday!

Thank you to Nancy, Bill, Evan, and Elijah for the gift. You guys put a huge smile on our faces! (Happy belated anniversary to you!)

Thank you to my Taichung Aunts, Uncles, and cousins for the card. And special thanks to my 3rd auntie for the handmade bear charm (so cute!) and generous gift.

Thank you to Caryn and Roia for serenading us over the weekend. You two are too funny.

Thank you to Eric, Vivian, Louis, Sha, Crystal, and Patrick for the big surprise! You guys are wonderful!

Thank you to Sha for the thoughtful gift and always treating us like royalty!

Thank you Joy, Jerry, and Alex for the very sweet card. We miss you and can't wait to see how much Alex has changed!

Many waters cannot quench love; rivers cannot wash it away.
~Song of Songs 7:7a

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 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!

happy happy joy joy

What a crazy trip this has all been. And yet, at every turn we keep getting greeted by blessing after blessing. Today we received the best news yet. Joe has been discharged from Short Stay for good behavior. :) What does this mean? This means that even though we haven't yet reached Day 30, we no longer have to go to the hospital every single morning. What does that mean? It means that tomorrow, we get to SLEEP IN! Joe's WBC is up to 3300. Today he was officially taken off all of his antibiotics, which significantly decreases his pill intake. Now he just needs to take two anti-rejection meds and one anti-viral med. Also, for the first time in weeks, Joe's magnesium level was in normal range. Because of the drugs he's on, the level will probably dip again. But Joe will take tablets instead of getting an IV. The truly amazing part is that for now, Joe only needs to go to the hospital twice a week. Seven days down to two is a HUGE blessing. It was supposed to be a gradual taper, but Joe has been doing so well. Praise the Lord!

Joe's mouth sores continue to improve. Nausea is rare and doesn't last too long. Joe's appetite is getting a little better, although his taste seems a bit blunted. His mouth sores have improved greatly. The only new thing is tenderness in his fingertips. His fingertips and the meaty part of his palm are red, and they are sensitive to heat and friction. The doctor said that this is a common side effect of FK5O6 (tacrolimus/Prograf) as well as Busulfan (one of the chemotherapies Joe was on pre-transplant). In time, this too shall pass.

What can I say? God is good, and all of your prayers, love, hugs, and support are apparently working. Thank you, thank you!

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!!!!!!

Wonderful news!

Going to the hospital every day has become our daily job. But it's a lot worse, because it's not fun or fulfilling. But the good news is that Joe is getting better and better each day thanks to the wonderful doctors and nurses caring for him.

We made it to the hospital today in good time, only to be greeted by a full waiting room that kept getting more and more packed. We've never seen it so busy. Our wait in the waiting room was almost a full hour. Fortunately, somebody was great enough to order Joe's meds in advance, so they were ready when we got to his room. Joe is now getting half the fluids he was previously, he is still on vanco for a few days (which has brought down his temperature, and taken away the tenderness around his port), and of course magnesium. Unfortunately, one of Joe's anti-rejection meds depletes magnesium, so even after he stops getting it IV, Joe will have to start taking it in tablet form.

Now for the wonderful news. The doctor rounding today came into the room and said, "wonderful news!" Joe's WBC (which jumped up to 376 yesterday) is 900 today! This is the real deal. His WBC should just keep jumping up now. Platelets and RBC take a little more time, but we can be patient with those. Joe hasn't seen our house in over 3 weeks now, and he is itching to go back. He's decided that Sunday will probably be the day we head out of Hotel Mom & Dad. Of course, it has been noted that we are welcome back to the "hotel" anytime. We've been really blessed to have the extra help.

Thank you Marcus for visiting Joe while you've been rotating through the hospital. You really helped the days go by faster.

Thank you Albert for the great care package! We know you are super busy, so it means a lot that you took the time and thought that went into it.

Movin' on up!

Today marks two weeks since Joe's transplant. He has been feeling fatigued, but things are slowly getting better and better. Today was a good day for counts. Joe's platelets are now 66. His WBC jumped up from the 60s to 166. And his hemoglobin is 10.2. The doctor said that his platelets should continue to rise, his WBC should start jumping up, and it is pretty definite Joe will be able to avoid getting any blood transfusions! Yippeeeeee!!!!! It is amazing how well Joe has been doing through the whole transplant process. God continues to bless us beyond measure.

Joe's temperature started to creep up last night. It went up to 99.9. This morning it was 99.6. Also, the area around Joe's port has been a bit tender. There has been no swelling or pus. Just to be on the safe side and to avoid any surprise admissions due to fever, which is a sign of infection, which means several days and nights in the hospital - Joe was given Vancomycin today. If you recall, this is the stuff that causes red man syndrome. Joe didn't have as strong of a reaction today as he did back in August. But this time, with no hair he did look a bit like the red version of a Blue Man from the Blue Man Group. All is well now. Joe is just more tired than ever because he got some Benadryl to help with the itching from the Vanco.

Once I get back to my normal computer, I'll start sharing photos from these past couple weeks. :) As always thanks for all of the love.

New Man

My husband is a new man! Yesterday, he went from looking like this, to looking like this, to looking like this. Just as Gretchen says, "bald is beautiful." Joe looks as handsome as ever. My mother said, "so now you have a sexy, bald, husband?" Joe's mom likes to joke that I'm caring for a baby...with a 21 year old mom. Joe says he now knows what it is like to be an old old man. He has no hair. He shuffles from the bed, to the restroom, to the hospital, and back again. Reading is his main source of entertainment. His diet consists of Ensure, popsicles, Jell-o, and millions of pills. Although, Joe's mouth sores started getting better today. Yay! Joe's platelets continue to rise little by little. His WBC look like they are creeping up as well. So things are going as well as they could be. Tomorrow will make 2 weeks since the transplant.

I must share the story of Joe's hair. He started off the day with a full head of hair. During his visit to the hospital, Joe was really fascinated by how easy it was to pull out his hair. Joe jumps in the shower after every hospital visit. Yesterday afternoon when he started washing his hair, it all started falling out. When Joe stepped out he had big bald patches on the front of his head.

In the evening, Joe's dad had requested that I make some chili. Joe LOVES chili, but unfortunately he couldn't eat any with his mouth sores. So while I had chili with my in-loves, Joe found a way to entertain himself. He went to the bathroom and started yanking out all of his hair. He figured this was better than leaving trails of hair everywhere and waiting for it to all fall out on its own. After dinner, I went to help. It was actually really funny in a weird kind of way. So by the end of the evening, Joe was officially bald!

That is about it. We are really encouraged by his progress, and just keep praying that all continues to go smoothly. Praise the Lord!

Long day.

Sometimes it seems that Joe's body wants to create a little excitement just to make things more interesting. On Tuesday, Joe's platelet count was 10. He had a platelet transfusion. Yesterday, his platelet count went all the way up to 11! Today it was 9. Joe had another platelet transfusion. His body, after pondering a bit decided that things have been a bit boring. So Joe's body decided to break out into a rash after receiving the transfusion. It started out as a bit of itchiness in the neck area. Then some little bumps near the belly. Soon enough, Joe's whole front and back was bright red. Joe was in agony with the itchiness and burning. Then came some tightness in his chest, and nausea. Fortunately, some benadryl, solumedrol, and ativan fixed Joe up in no time...it also knocked him out. Joe thought he was asleep for about 30 minutes, but it was actually a few hours. There is absolutely no sign of the rash anymore, which is great. Joe got an EKG just in case. It was normal. A whole bunch of cute nurses were popping into the room to make sure that Joe was okay. He was being given the royal treatment. All is well now. Hopefully, Joe's body decides to behave better now. We were only at the hospital for eight and a half hours today.

His WBC is still low, low, low - just 51. Yet, Joe continues to avoid getting any fevers. Praise the Lord! He eats a bit here and there. Just enough to keep him going. And in case you're curious, Joe still has a full head of hair. It is stuck to his head like superglue. We're taking bets as to whether he'll end up losing it or not. Okay, maybe not. I don't want to be accused of encouraging gambling.

Just a friendly reminder, although we are thankful for the gesture, Joe is not able to receive fresh flowers and plants right now. Just knowing that people are loving and praying for Joe is the best gift ever.

Also, a certain day of a certain week, of this month is special. And although I like to acknowledge such things when I'm aware, this time I've been given strict orders not to say anything. So for those readers who know what I'm talking about - I'm not being bad and forgetful. I'm just obeying orders. And for those who haven't the faintest idea what I'm babbling about...that is good, because you're not supposed to. :)

Sixty-six!

The normal range for WBC (white blood cells) is 4500-11000 cells/MCL. According to Joe's blood draw this morning, he has 66 cells/MCL. They have to be counted manually. It just amazes me how low they are. This week Joe's WBC are expected to be at their lowest. Sixty-six is pretty much lowest. In a few days they should start inching their way up to a more acceptable range. For now, Joe wears a mask while outside of the house. And we've all become pretty obsessive about washing our hands and being clean. Joe even gets his own personal blood pressure cuff and thermometer at the hospital. Pretty special, eh?

Remarkably, Joe is currently feeling better than he has been in awhile. Yesterday and this morning he had a throbbing headache. Today it was discovered that one of his drug (FK5O6/Prograf) dosages may need to be tweaked. Patients on Prograf are tested twice a week. Joe was tested yesterday, and the results today show that his levels are too high. This is a possible reason for his headaches. So hopefully, the headaches will be better once the dosage is changed.

Joe did have a platelet transfusion today, and more magnesium. His appetite is increasing little by little, and Joe can tolerate more than just rice and broth now. When we left the hospital, Joe said that his headache was gone. Everything else felt good too. Hooray for every victory!

Thank you to Akiko and Joe for the balloons! They are so fun and cheery.