Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts

Friday, August 31, 2007

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.

Saturday, August 25, 2007

chemo

Well, Joe's cultures from Tuesday ended up becoming positive after 48 hours. However, Joe remained afebrile. Because Joe was feeling quite well and had no worrying symptoms, the doctors decided to just jump right in and start chemo on Thursday. On the one hand, it's not ideal to start chemo when there is some type of infection. On the other hand, Joe was already lacking any WBC that might help to fight off the infection. The doctors decided that it would be best to start chemo before Joe's disease decides to rear it's ugly head again rather than wait for the cultures to become negative - which could take weeks.

Joe is doing well so far. His appetite is still pretty good. We just keep praying for negative cultures and for the chemo to do its job! Chemo started on Thursday evening, so Joe will be done on Tuesday evening. There was a bit of a mix-up with the "+2" part of the chemo. Not a big deal. Because of the mix-up Joe didn't get his daunorubicin on the first two days of his regimen. He'll be getting it on the last two days now, and that's okay. Apparently that's how they do things in Europe, anyway. So Joe's treatments have a bit of European flair this time. Classy, eh?
~~~~~
A very Happy Birthday to Louis!!! Hope you're able to celebrate in style.

A big congratulations to April & Paul who got married last weekend. :)

Wednesday, August 22, 2007

hey there fever. stay away!

Joe had an eventful weekend. The fun part was the visitors. Albert was able to come back for a brief visit. A visit from Albert is always guaranteed to put a HUGE smile on Joe's face. The smile on Joe's face was even bigger and brighter this past weekend though because Joe's 1st uncle & aunt and 2nd uncle also came for a visit. It was Joe's 1st uncle & aunt's first trip to America. It was a lot of fun bonding and chatting. By the end of the weekend it was determined that when that wonderful day comes when Joe and I are able to plan a trip to Taiwan together - we'll have to set aside several months! Between my relatives and his relatives...oh boy, oh boy. It'll be fun, and we are having fun dreaming.

The drama side of the weekend is that the "negative" culture result we received on Saturday was a bit premature. Those cultures did end up being positive after all. As a precaution, and because fellows like to cover their butt and order everything under the sun, on Sunday Joe had a CT of the chest, abdomen and pelvis. Nothing remarkable was found, except some improvement in Joe's lungs compared to the previous chest CT. An ultrasound of the neck was also ordered and performed on Monday. We're still not quite sure why it was ordered, but it gave Joe another excuse to visit the radiology department. Within five minutes of being in the waiting area, Joe had about ten people go and greet him. I'm sure the other patients were wondering what kind of celebrity was sitting before them! Again, nothing remarkable was found.

On Monday, Joe was also taken off of Daptomycin and started on Linezolid. Because Joe's WBC is so low, Linezolid seemed a better choice. Each day since the discovery of the bacteria, Joe has woken up with a fever. The fever generally lasts a few hours and then Joe is afebrile until the next morning. This morning was the first time that Joe woke up without a fever. Woohooo! Also, 21 hours after yesterdays culture, it was still negative. This is a good sign, and the huge smile that Joe's dad was sportin' all day is proof of that. So now, chemo could start as soon as tomorrow. For real this time.

Just like Joe's first round of induction chemotherapy, Joe will be getting cytarabine (Ara-C) and daunorubicin. The last round was a "7+3" regimen. Joe received cytarabine continuously for seven days (7). For the first three days Joe also received daunorubicin, the fifteen minute infusion that looks like cherry kool-aid (+3). This round will be shorter, a "5+2" regimen. So five continuous days of Ara-C, and daunarubicin the first two days.

Other interesting news. Joe's fingers have been peeling for a couple weeks now. It was very similar to when Joe started getting GVHD. Interestingly enough, some final results from Joe's last bone marrow biopsy showed that Joe still now has 5% donor in his marrow. So the peeling is definitely from GVHD. Now since the donor has survived all the post-transplant chemo Joe has had so far...how neat would be if it survived this next round as well, and blossomed! Nothing's impossible right? Something to think about. What is even more interesting and strange is that Joe's marrow went on to show 25% male. So what was the other 70%? It was x0. That is, a single x chromosome. We have no idea what this means...except that it does NOT mean that Joe has Turner Syndrome. Very strange.

Joe has remained CMV negative for several weeks now. Yay! He has had 115 platelet transfusions and 32 units of blood since May 21. His appetite isn't too bad. And yes, he is thinking about new paint colors for his room, ordering new furniture, building an addition, and requesting that the room be named in his honor!

Jim and Jesse completed the Marrow Trek! Read their last Blog entry if you haven't already. They are truly amazing guys. THANK YOU Jim and Jesse for being such amazing friends!!!!!
~~~~~
Thank you 1st Uncle & Auntie, 2nd Uncle, and Albert for visiting!!!!! Joe was so happy to see each one of you.

Thank you to Uncle and Auntie Tzeng and LeeAnn for your visit. It was really nice to catch up with you.

Thank you Phyllis, Auntie & Uncle R.C. Lin, & Auntie Tzeng for the cards. They always brighten Joe's day.

Yoohoo, HANNAH (banana) HAPPY HAPPY 4th birthday!!!!!!
And congratulations to Sheena (Mareena) on being an Aunt!

Saturday, August 18, 2007

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.

~~~~~~
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.

Wednesday, March 14, 2007

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.

Monday, January 08, 2007

Day -1

Wow, wow, wow! All of you did an amazing job making Joe's day today. The hospital delivered 28 cards to his room today! This makes a total of 30 cards that he has received from the WPAH site, not to mention the ones he's received by snail mail. The lady who delivered the cards said that if he received a dozen more, he may break a record! Joe was so thrilled to read all of the sweet and thoughtful messages. He received cards from three different countries. After every few cards, Joe would look down and exclaim, "Wow! There are still so many cards left!" Thank you so much for the outpouring of love. The smiles on Joe's face were priceless. If you haven't already, you can still join in the fun! Just click here. Follow the directions and choose "West Penn Hospital." The best part is that it is free. :)

Last night Joe finished all of his chemotherapy. He was SO happy! Joe took it like a man, and that part is finally over.

Joe started his second dose of Thymoglobulin today. The wonderful part is that so far he is tolerating it extremely well. He has had no major side effects from it. Let's pray this continues to hold true! Apparently two other patients on the floor are receiving Thymoglobulin, and unfortunately they are not tolerating it so well. We don't know who they are, but we can surely say a prayer for them as well. It isn't easy for them, and it surely isn't easy for their families either.

Today, Joe also started taking two different anti-rejection drugs in pill form: FK5O6 and Cellcept. He will have to continue taking them for a year. Among other things he is also taking acylclovir, which he'll be on for at least 180 days. Also, avelox and diflucan which Joe will take until his neutrophil count rises again.

Tomorrow is the day! Day 0 (Zero) - Joe's new birthday. There will be no fireworks or fanfare. Just a bag of stem cells that he'll receive the same way he has received blood transfusions. That means today is Joe's last day being 100% Joe, 100% of the xy species, and 100%O+ blood type (His donor has A-type blood). This also means we need to be praying for his donor right now!!!!! This is her crazy day. After getting filgrastim injections for several days, she likely started the harvesting process this morning. The place where she is having her stem cells harvested is having her do a double donation. So she was hooked up for four or five hours this morning. She had, or will have a short break. Then this afternoon she'll be hooked up for another four or five hours. We are so incredibly thankful to this stranger for giving so much of herself so that Joe has a chance to be cured. How amazing is it that a girl of only 21 has been chosen to do something so noble, and has accepted the challenge. I imagine she has gone through so many emotions herself. She doesn't even know Joe! She is a very brave young lady. Hopefully one day, we will have the opportunity to meet her and thank her in person.

Shortly after Joe's transplant, either Tuesday or Wednesday and assuming all goes well, Joe will be able to go home. However, he'll have to return to the hospital every day for at least thirty days. Each day he'll have his blood drawn to see if he'll need any transfusions and to monitor his progress. We'll probably stay with his family initially so that we can all be together.

That's it for today's update. Thank you again so very, very much for all of the love you have sent Joe's way. It has really lifted his spirits to know that so many people are rooting for him.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
~Isaiah 43:2
Posted by Picasa

Sunday, January 07, 2007

Day -2

Joe is currently bonding with Jay over football! Joe is still in good spirits, although he has decided that being drugged up is not at all fun. Tonight will be his last night of the fludarabine and busulfan. This morning, Joe was started on the first of three rounds of Thymoglobulin, an immunosuppressant that seems to be quite unpleasant. There seems to be a whole host of other drugs Joe has to take along with the Thymoglobulin to ward off its potential evilness! The same goes with the chemotherapies. Poor boy. I'm sure he is taking more than 10 different drugs a day now.

Joe has pretty much lost all desire to eat. His meals now consist of a can of creamy milk chocolate Ensure Plus, and little else. He keeps saying that all of this is still better than his first hospital admission when he had the awful rash and constant fever.

Joe's preparing himself for what's to come, but hoping it won't be too bad. The nurses have warned him that post-transplant is when things get rough. That is when he'll start losing his hair. That is when he might develop rashes or infections. That is when the mouth sores may come back. Of course everyone is different. Everybody gets hit with some unpleasantries, but there is a spectrum. Joe is being a real trooper, he's still smiling and he's still being his sweet self. I'm sure that he'll be able to handle whatever comes his way. In his own words, "This ain't no thang." But I'm still going to pray like crazy that all goes smoother than possible. It warms my heart to see him being so strong, but it breaks my heart to see him go from bouncing around to being bedridden in a matter of days. I love that boy.

Thank you to everyone for your continued prayers and support.
Thank you to Jay for visiting and entertaining us with your stories, and for the collection of books!
Thank you to Julie and Gordon for stopping by and bringing chocolates!
Thank you to first-day-on-call-Paulette for stopping by to bring Joe every flavor of gum on the planet!

Friday, January 05, 2007

Still Smiling!

All is still well on the 7th floor. Joe is still smiling. He is experiencing headaches due to the lumbar puncture, but they go away when he is lying down. At times he experiences some nausea. Last night, he discovered that he doesn't have too much tolerance for meat anymore. Then this morning he discovered that bacon is still okay! In Joe's words, "if this is the worst of it, I'm good to go!" So we're praying that all continues to go smoothly. Three more rounds of chemo. Joe is excited for the weekend because he'll have football to distract him!

I'm not sure if I've mentioned this already, but in case I haven't Joe is not allowed to receive any plants or flowers while he is in the hospital. This rule will likely apply for awhile after he is discharged as well. Save your money and send him virtual hugs instead!!!!!!

Thank you so much to Auntie and Uncle Liang for the encouraging books. You are so sweet.

Thank you so much to Thomas, Evonne, and Leah for such a touching and meaningful gift, and sharing a bit of you with us.

Happy belated birthday to Simon!

Thursday, January 04, 2007

Little Update

Just a little update. :) First of all, thank you for all the support we've received from all over! The phone calls, emails, comments, prayers...they mean so very much.

Joe was admitted to the hospital yesterday morning. He had a super busy day being a human pin cushion. His blood was drawn, he had an IV put in temporarily, he had a central line put in, he had lumbar puncture, and a bone marrow biopsy. He says the bone marrow biopsy was the most painful. The l.p. was surprisingly not bad at all. Today however, he cannot feel the biopsy and his back is extremely sore from the l.p.

Last night at 6pm, Joe started his first bit of chemo. He was given fludarabine over an hour. Tonight he gets some more of the fludarabine and another drug will be added. I believe it is Busulfan. That will be over 3 hours. So he'll be getting chemo for a total of four hours. Joe is also getting all kinds of pills. And, he is getting IV Fluids around the clock to make sure that his kidneys flush properly.

As of this morning, Joe is still smiling. He is definitely feeling a bit drained, but he still has his appetite. To prove his "Joe-ness" and that all is going well so far, Joe has named his IV pole Khemo Van Oelhoffen aka "Bling Bling!"

I'll continue to update when I can. Thanks again for all of your love!!!!!!!

p.s. You can send joe a card for free by going here. (West Penn Hospital). They will print it and deliver it to him. Pretty cool!


Here is Joe posing next to his new buddy, Khemo Von Oelhoffen. They have become inseparable. I'm a little jealous. :)


















And here is the lovely view from Joe's jail cell...er, uhm...hospital room.

Posted by Picasa

Sunday, December 10, 2006

No more Vidaza!!!!!!

God-willing, Joe will not be getting anymore Vidaza. Yippeeeeee!!!!!! He finished round 6 on Friday. This time around he is extra sore and extra itchy. Despite all that Joe is doing a remarkable job of not complaining much. His counts also do not seem to be responding as much as they used to. According to Friday's blood draw, Joe's WBC dipped down again. This makes us more grateful than ever that all the planning for Joe's transplant is well under way. Speaking of which, according to the NMDP, the 37 year old male donor mentioned in a previous post is very committed to the whole process. He has scheduled the pre-transplant informational meeting for tomorrow, and his physical for the 20th. Pray that all goes well!

We have so very much to be thankful for this weekend. Thank you to our CrossRoads brothers and sisters for entertaining us! All of you have been so amazing and so supportive in so many ways. Even long before Joe was diagnosed we have felt your love and we're grateful for it!!!!!

Thank you to Sheena for singing with me this morning. I love teaming up with you!

Thank you to Louis and Sha for feeding our egos and telling us we're cute all the time. And thanks for hanging out with us!

Thank you to Joe's mom and dad for a lovely lunch this weekend, and Thank you to Steve for joining us. How fun to swaps stories and memories!

Thank you to my cousin Pei-chen for the card. It makes us feel so special that you are always thinking about us no matter where you are in the world!

Thank you to Mrs. Ott, Patrick, and Susan for the gifts. Each of you had us jumping up and down and squealing with excitement. (Okay, okay...it was just me jumping up and down and squealing because that's what I do...but Joe had a big fat grin on his face which is the equivalent of jumping up and down and squealing!)

And as always, because we couldn't possibly say it enough (and because we mean it with our whole hearts each and every time...i promise it's not something we toss out lightly) thank you to every single person who has prayed for us, given us real hugs and virtual hugs, loved us and supported us. We are able to stay strong and be positive each day because God has surrounded us with the most amazing friends and family...and even people we do not know. How blessed are we?

In the sixth month, God sent the angel Gabriel to Nazareth, a town in Galilee, to a virgin pledged to be married to a man named Joseph, a descendant of David. The virgin's name was Mary. The angel went to her and said, "Greetings, you who are highly favored! The Lord is with you."
~Luke 1:26-28

Wednesday, December 06, 2006

It's a boy?

Joe had his third dose of chemo today. All went well, although this round is making him feel a little "yuckier" than usual. Naps have proven to be helpful.

His pre-transplant tests have been scheduled for the 18th. Joe will have to give up about 14 vials of blood, among other things. Lucky guy, eh? Well, the blessing is that both of our brothers will be coming home later that week for the holidays.

The other news is that Joe may not have xx chromosomes floating about him in the new year after all! The NMDP is pretty much the middle-man between us and the donor. They informed our transplant coordinator that they aren't sure whether our chosen donor will end up following through with the transplant. Apparently, she has rescheduled several appointments, and the NMDP just has a feeling she might be hesitant. So, in order to keep our bases covered early on...rather than getting a not so pleasant surprise the day of transplant...a request has been made for the 37 year old male donor. So far nothing is definite, but it is good to know that we have the option of choosing another donor, just in case. Praise God for that.

Tomorrow (the 7th!) is a very special day. It is my father-in-love's birthday. If you see him around, make sure to wish him a very HAPPY HAPPY BIRTHDAY!!!!!!!!!

And, it is also beautiful Holly's birthday. She was one of my roommates for a year. The year that I had FOUR roommates. What an interesting year that was. :) Happy birthday!!!!!

Jesus went through all the towns and villages, teaching in their synagogues, preaching the good news of the kingdom and healing every disease and sickness.
~Matthew 9:35
Posted by Picasa

Round 6!

All is well! Joe started Round 6 of his chemo on Monday. Today, the results of his blood draw showed that his counts are slowly sneaking back up. Very good sign. Speaking of counts and good signs, many know that Joe's dad went through a period of very low platelets. Well, he had his blood drawn on Friday, and everything is normal! Yay for that.

Either next week or the week after Joe will be spending a day at the hospital getting all kinds of fun tests to prep for his transplant. We should find out soon what day the test are scheduled.

We had a nice visit from Joe's med school friend Arun over the weekend. He just returned from 6 months in Iraq. It was so good to see Arun and hear all of his stories.

That's about it for today.

Oh yes, I received this message from Aplastic Anemia & MDS International Foundation yesterday...

"Who hasn't uttered the words, "I wish there was something I could do to help"? Now you can. Start shopping! At http://www.industrymailout.com/Industry/Redirect.aspx?u=39490&q=23712705&lm=5097448&r=37213&qz=c15215e62b0707092f1c81393ff61b46 you can buy the gifts you're planning to give this holiday season - like that DVD box set, cologne, or the wall-mounted flat-panel TV you've had your eye on - and help a great cause!
It's FREE -- no invisible costs or tricky obligations. Shop for everyday items from over 650 stores at the Mall at iGive.com, like Barnes & Noble, Lands' End, Best Buy, and Neiman Marcus. Up to 26% of each purchase is donated to the Aplastic Anemia & MDS International Foundation at no cost to you.
Start shopping today at http://www.industrymailout.com/Industry/Redirect.aspx?u=39490&q=23712705&lm=5097448&r=37213&qz=c15215e62b0707092f1c81393ff61b46 and help save lives this holiday season and every day at the Mall at iGive. "

Something to consider if you are doing online shopping, and you aren't already attached to another charity.

Happy day! Posted by Picasa

Saturday, November 11, 2006

Round 5 - Complete


Joe has completed his 5th round of chemo!!!! He is more sore than usual, but that didn't keep him from putting in a few half days of work. Joe's counts are looking good, so continued praise for that!

On Thursday evening, Joe had the opportunity to spend time with Mammen. It was a great time for them hang out with out the annoyance of nagging girls...ok, ok. Without the nuisance of annoying ME! :)

Friday night we went to fellowship. This morning, we got to spend time with Joe's parents. They even brought over some yummies!

That's about it. On to prayer requests and praises!

***
Please pray for Baby Livi and family. They have been stuck in the hospital, because poor Livi got the flu. She is doing
better now, but she won't be discharged until she is off of oxygen for 24 hours. That hasn't quite happened yet.

Pray for Amy and family. Amy was diagnosed with AML around the same time Joe was diagnosed. Her journey has been rough, but she has such strength, and so much faith. Monday is her "Day Zero." She'll be going through a PBSC transplant, with her brother as her perfect match.

***
PRAISES!!!!!

Christine received news (As of Nov. 6) that she will be able to go HOME! She is the girl who had the risky partial-match transplant. She was on hospital grounds for 134 days at the time of her last update. I hope she is home now!

Thank you to Mammen for treating Joe to dinner! It was fun for him to get out of the house.

Marcus celebrated a birthday on Friday. HAPPY belated birthday!!!!!!!

And...the 12th is another SUPER SPECIAL day!!!!!! It is my In-loves' (I've discovered that sounds much better than In-laws....) anniversary! Such a beautiful couple. Happy happy anniversary Mamma and Dad!

And, a very HAPPY HAPPY BIRTHDAY to my MOMMY!!!!!! She's turning...uhm...39. :)

My mouth is filled with your praise, declaring your splendor all day long. But as for me, I will always have hope; I will praise you more and more.
~Psalm 71:8,14
Posted by Picasa

Wednesday, November 08, 2006

Over the hump of Round 5


My Joseph is well into round 5, and he is again doing as well as can be expected. He's expecting the usual soreness and nausea, but as usual he's being a trooper. Joe's counts are all up a little this week, which is a good sign that the chemo is still working as it should.

The two of us are both more emotional lately than usual. The reality of what is and what is to come will just hit us individually at random moments. Fortunately, we're able to discuss all of our feelings openly which helps so very much.

No word yet on the four people who have gone for further testing. It doesn't look like we'll be getting any other people to test though. It sounds like several other potentials contacted declined to move forward for whatever reason. So after these four, we'll be moving towards transplant no matter what the results. As I've mentioned before, this is both a relief and a source of anxiety! In any case, we are strong. Joe is strong. And with the overwhelming support we have from all over, we will fight, fight, fight.

A lot of fun praises for this week!

A very HAPPY, but belated BIRTHDAY to my Big Uncle! He celebrated his birthday on Monday. Happy Birthday!

Happy 1st birthday to Gabe! Congratulations on your television debut Mr. Dinosaur! You are too cute.

And the 9th, is a very very special day. It is my cousin Yi-Ting's birthday! (Why yes...as a matter of fact, she is single. If interested, simply send your application and photo to me, my mom, or any other member of Yi-Ting's family. :) ) Yi-Ting and I have had lots of fun ever since we were young. Even though we only get to see each other every few years, when we get together, it's as if no time has passed. HAPPY BIRTHDAY, my dear cousin!!!!!!

And, the 9th is also a very special day because it is my parents' WEDDING ANNIVERSARY!!!!! (Isn't their wedding photo great?) HAPPY ANNIVERSARY MOM and DAD!!!! Thank you for being so wonderful and loving. You have been a HUGE blessing to us. If you see my parents, make sure to wish them a happy anniversary. :) (I think it's been 32 years...but don't quote me on that. :P)

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
~John 14-27
Posted by Picasa

Wednesday, November 01, 2006

Happy November!

Joe had a dentist appointment today. Now his smile is even brighter than before! His hygienist was really sweet. She has her own inspiring story, which she shared with Joe. After Joe's appointment, the hygienist actually called me back so she could share a bit with me, and give me some encouragement. I thought that was so sweet. :)

On Friday, Joe has his appointment with the doctor. I can't believe that next week will be round 5 of his chemo treatments. I imagine on Friday we'll have a better idea of what our next few months will look like. I'm not sure if this makes me relieved or anxious. Both I guess.

Here's something cute my mom passed on to me after receiving it from a missionary back home...

Daily Christian Wisdom

Being a Christian is like being a pumpkin. God lifts you up, takes you in, and washes all the dirt off of you...Then He carves you a new smiling face and puts His light inside you to shine for all the world to see.
-Unknown
***

Lot of praise and thanks today.

Praise God, because 355 registered to be donors at the drive in honor of Baby Livi. How awesome is that? Yay for everyone who attended.

Thank you to our neighbor Cathy for the really yummy pumpkin bread. Made from scratch even.

Thank you to Myra and Sheru for dinnering with us last night. It was really fun hanging out with the two of you and hearing all of your stories!

Thanks to Eddie who has been working with CLLF hold a drive in North Carolina! We miss you Eddie!

Thank you to my CrossRoad girls. It is so wonderful to have your love, support and encouragement.

***

I have info on Cammy Lee drives for November! Spread the Word!

Nov. 8
Virginia Commonwealth
College Avenue
Richmond, VA
11am-5pm

Nov. 10
Columbia University
New York, NY
11am-5pm

Nov 14-15
Virginia Tech
Williamsburg Room of Squires Student Center
Blacksburg, VA
9am-9pm ,9am-8pm

Nov 15 or 16
Stonybrook University, NY
11am-5pm
(not confirmed at this time)

Nov 26
Apex Chinese Church
Apex, NC
11am-5pm

Nov 27
Duke University
Durham, NC
11am-5pm

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
~Isaiah 41.10

Friday, October 13, 2006

End of Round 4!

We didn't get a call today stating that Joe's perfect match was found. We haven't lost hope either. There is always next week!

Today Joe had the last of his injections for round 4. YAY!!!!! I know he is way happy about being done for a few weeks. Me too! The results of Joe's blood draw showed a little dip in his WBC, so they are back to "right under average." Not too bad. Joe's platelets look good. And funny enough, his RBC are now on the high side of normal. Hopefully they stabilize. It seems weird that they suddenly just keep going up.

I snapped a picture of the view from the top floor of the hospital parking garage. Can't tell from the photo that the weather is getting COLD!

Please pray for Christine. I've mentioned her in the past, and posted some of her poems. She is an amazing person, and is very much a poster girl for minorities who need bone marrow and PBSC transplants. We were so excited a few weeks ago when we found out that after a very risky partial-match transplant the marrow had grafted. Unfortunately, this past week things haven't been looking so good. Christine is experiencing many complications. We don't know her, but she has been such a source of inspiration. Keep her in your prayers.

On the same note, there will be a fundraiser and bone marrow drive in LA, in Christine's name as well as her friend Jeremy. Click here for more info.

And of course, lest you think I've been slacking! I have more bone marrow drive info from CLLF!

Friday, Oct.20
11am-6pm
Drexel University
Creese Student Center
Philadelphia, PA

Mon, Oct. 23
11am-4pm
John Hopkins University
3400 Charles St.
Baltimore, MD

Wed, Nov 8
11am-5pm
Virginia Commonwealth
011 College Ave
Richmond, VA

Tues, Nov 14-15
10am-8pm
Virginia Tech
Williamsburg Room of Squires Student Center
Blacksburg, VA

Spread the word, spread the word, spread the word!!!!!!

Thank you to Yi-Ting and my 3rd auntie and uncle for the sweet cards. You are the best!
Thank you to hubby Joe for the second best gift ever. (You being all better will be the BEST gift ever! Of course, if we want to get all technical and sappy, you are the best gift ever.) I'm praying for you always!

Do everything without complaining or arguing, so that you may become blameless and pure, children of God without fault in a crooked and depraved generation in which you shine like stars in the universe as you hold out the word of life - in order that I may boast on the day of Christ that I did not run or labor for nothing. But even if I am being poured out like a drink offering on the sacrifice and service coming from your faith, I am glad and rejoice with all of you. So you too should be glad and rejoice with me.
~Philippians 2:14-18
Posted by Picasa

Thursday, October 12, 2006

Just one more day.

Joe had his 4th day of Vidaza. Today's injections were not fun at all. They were injected very slowly, and really burned going in, and so Joe was in some extra pain. He still keeps saying that all is well, and he's doing fine. I know Joe was exhausted today though because he kept falling asleep. He took 2 or 3 naps today. Poor guy.

There is a potential donor who went forward with the extra testing to see if he is a match for Joe. We're supposed to find out very soon. We're praying and praying and praying that it's a perfect match. There is only one thing that I'd love more - and that is that Joe would be perfectly fine and not need anymore treatments of any kind. That possibility passed long ago though...so I'll take the next best thing. A perfect match, and a perfect transplant. Maybe tomorrow will be the day. Friday the 13th can be as blessed a day as any other!

Lots and lots of things to be thankful for today!!!!!

Thank you to Dr. Tabor for donating to AAMDS in Joe's name. It means so very much to us. And Joe is really enjoying the books!
Thank you to Van, Rune, and Hannah for the wonderful gift. I know you must be trying to make us fat, but we love you like crazy anyway!
Thank you to Jen, Joe, and Gabe for the sweet card. We have much to catch up on. We'll be praying for you too!
Thank you to Mr. Christopher for planning a trip to see us. Sorry you ended up feeling under the weather. Hope it didn't last long. Surely there will be another opportunity to get together.
Thank you to Cammy for the cute card. We love you too! You better come back to Pittsburgh!

Happy happy 30th birthday to Heather. Wowie! Hope you're having fun.
Happy happy 2nd birthday to Evan! Thanks for singing to me. It was great!

Therefore, my dear friends, as you have always obeyed - not only in my presence, but now much more in my absence - continue to work out your salvation with fear and trembling, for it is God who works in you to will and to act according to his good purpose.
~Philippians 2:12-13

Wednesday, October 11, 2006

Round 4, Day 3

Joe made it through day three of round 4 of his chemo. Each day he gets two subcutaneous injections. It is pretty quick. Getting his treatments might take a minute, or two at the most. However, we travel about an hour round trip and sit in the waiting room for quite a bit.

As a whole the chemo Joe is getting is very well tolerated compared to other chemotherapies. Still, it is not at all fun. Every round the side effects are just a little bit different. This time around Joe is feeling much more tired than usual. He also gets really itchy at times. Two of the three injections sites aren't as red this time as in the past, but they are still very sore.

It is interesting to us that all the nurses have different thoughts about giving the injections. I already mentioned the issue with Bandaids. The other issue is where to give the injections. In the beginning, Joe was getting three injections. Each day the nurses would pick three completely separate locations. (One on either side of his belly, one in a thigh...) Then he had a nurse who gave all the injections in the belly. Then came nurses who gave all the injections really close together. That started to become consistent. Then a nurse who refused to use the belly. And now finally, Joe is told no belly, no thighs...just arms and hips. Joe did figure out that he likes staying away from his stomach. So we'll see how the hip area goes.

After Joe got his shots, we went upstairs to visit Lilly and some of the residents. It is always nice to see everybody!

Happy belated anniversary to...
Emily and James...we are praying for you and Alivia daily.
Ressica Jicketts ( ;) ) and Jeremy...you are so loved!!!!
Holly and Jonathan...let us know when you're back in Western PA. you're missed!
Bethie and Dave...a whole year, can you believe it?

Happy happy anniversary to cousin Van and Rune. You two have much to celebrate. :)

Happy happy birthday to dear Jeannette/Angelica. heehee. You need to come back to PA too!

Thank you to Shelley for the funny card. Your love is very much appreciated...even if you are a Browns fan. :)

*****
Your attitude should be the same as that of Christ Jesus:
Who, being in very nature God,
did not consider equality with God something to be grasped,
but made himself nothing,
taking the very nature of a servant,
being made in human likeness,
And being found in appearance as a man,
he humbled himself
and became obedient to death -
even death on a cross!
Therefore God exalted him to the highest place
and gave him the name that is above every name,
that at the name of Jesus every knee should bow,
in heaven and on earth and under the earth,
and every tongue confess that Jesus Christ is Lord,
to the glory of God the Father.
~Philippians 2:5-11
Posted by Picasa

Tuesday, August 15, 2006

We are so excited, because tomorrow we don't have to go to the hospital!!!!! It has been tiring to go back and forth from the hospital. A very different kind of tired than when Joe was going back and forth for work. And it's funny, we're always together...but we still don't always feel like we're spending time together! He stays busy with his little rituals revolving around his medications, diet, and hygiene. I keep busy with all kinds of house stuff which is never ending. It is nice though because we get to spend all of our meals together, and just chat. I love that time...and I'm pretty sure Joe does too! Tonight we played Hoopla, which is a game in which all the players play against the clock rather than against each other. It was fun...but we cheated a bit. hehehe.
Joe had his last chemo shot this morning. He is so tender everywhere. Even if he barely brushes an injection site, he can feel it. Hopefully that goes away soon! We had the opportunity to speak with the doctor. He is SO encouraged by Joe's latest blood work results. Often a response to the chemo isn't seen until after the 3rd or 4th round...and Joe showed a response after just one round. WOOHOOOOO! We are praying this second round shows an even better response.
That's it. Thank you again for all of you love! I can't tell you how often Joe and I will pause throughout a day just to give thanks for all the love we have received. We are just in awe.
Thank you to Auntie and Uncle Chen for the card. It is so nice of you to think of us!