Evolution of a PICC Arm Band

Today I share with you the evolution of a PICC Arm Band, and the innovative nature of my husband! When Joe had his PICC line placed last Thursday, they sent him home with this long folded up tube of "stuff." The idea was to snip off sections as needed and use those sections to cover his PICC. As you can see from the first photo, the material is cheap, kind of ugly, and it kept falling off. Plus, no matter how long we cut the material, once it was on Joe's arm it seemed to be too short.

Being the loving wife that I try to be and a joyful newbie knitter, I decided that it would be fun to knit Joe a PICC arm band. In fact, months ago, I remembered that I had come across a free pattern at KnitPicks.com. I even had the yarn that they recommended - one that they said "minimizes pilling and stretching." It really is a lovely yarn. And I knitted up the band in no time. It looked absolutely beautiful! (not that I'm bragging or anything) For the first five seconds that is, then it proceeded to prove that it in fact, maximizes pilling and stretching. At least when knitted up by a newbie like me. It looked perfectly snug when Joe put it on. Even a little bit tight. But once those first five seconds passed it proceeded to stretch enough it could have fit around his thigh. *sigh*

Being the innovative person that he is (and loving - Joe was really intent on making the arm band work!) Joe suggested using bicep bands to hold the arm band in place. PERFECT!

But then, my innovative husband came up with an even more perfect idea that will have PICC line wearers everywhere running to their nearest sports store. Joe was watching basketball, and noticed that a bunch of the players were wearing these sports sleeves (they are actually called shooting sleeves in case you are sports illiterate and curious.) They looked like they had just the right amount of stretch, and because they are made for athletes, we figured they had to be comfortable and breathable as well. Yes, yes, yes. Joe is a genius. Maybe Nike will hire him to create a line called "NikeChemo." (Are you listening Nike? huh, huh, huh? We LOVE YOU!) The sleeve works like a charm. It also has the added benefit of creating instant long sleeves, which is perfect for Joe since he has to cover up when going outside to protect his skin from the sun. The nurses at the BMT office were so impressed, they said that they were going to share the idea with all of their patients with PICC lines. Apparently, patients have come up with some pretty crazy excuses for arm bands. Joe's so smart. He's also a wannabe athlete. (shhh...don't tell him i said that!)

We received some hopeful news today! After a bit of a delay, we finally got Joe's CMV results from both this past Tuesday and this past Thursday. Both were NEGATIVE. We were so excited. Joe talked to one of the doctors on the phone today, and he could practically hear the doc jumping up and down with joy! This was a nice change from yesterday. Yesterday, Joe and I went to the hospital for his Cidofovir. Joe also ended up getting another platelet transfusion. When we met up with the doctor he sounded so serious and concerned about Joe's progress. We're still gunning for a miracle as far as Joe's next bone marrow biopsy. Another thing that gave us a little bit of hope today is that Joe's WBC has inched up a bit more. It is actually higher than it has been in weeks. Hopefully this is a good sign. Keep on praying!!!!!!! Second transplant - pshaw!

Don't forget. There are still a few more days to take advantage of the "Thanks Mom Marrow Donor Drive." You can register to be a donor for FREE if you sign up before May 21. Please, please, please, help us spread the word. It would mean so much to us. (Thanks Tina! We saw that you posted about it. :) )

Marrow Trek

Hello again,

I'm blogging this time to implore you to support a good (no, dare I say great) cause. One of my best friends from college, Jim Schoettler, called me a few weeks ago to obtain my input on a "project" he was working on. Knowing Jim, I was pretty sure this project involved snots and a dartboard, but I was mildly shocked and quite touched when he revealed his heart and his motivation to raise awareness about bone marrow transplants and the need for bone marrow donors. I enthusiastically jumped on board his project as well. Jim, of his own volition, contacted the Dana Farber Cancer Institute for sponsorship. I also put him in touch with the Cammy Lee Leukemia Foundation (who helped me with several bone marrow drives). This summer, Jim and another close friend of his, Jesse, from our college days (both experienced expert hikers) are planning a 4 month 3,100 mile trek across the Continental Divide Trail spanning the Mexican border to the Canadian border. They are asking for pledges (monetary and otherwise) for their trek with all proceeds going to support the above organizations. We are also currently working on getting more big organizations/corporations for sponsorship. With any luck, Jim and Jesse will be donning jumpsuits a la NASCAR style on their journey! ("Shake and bake") I know you're thinking that mountain goats and lizards and such may not really appreciate Tide or Marlboro or Coors Light logos. In fact, Jim and Jesse may inadvertently be walking targets for horny moose, but that is neither here nor there... All joking aside, Jim has set up a website, marrowtrek.org or marrowtrek.com, where you can find out more details and follow their progress. Incidentally, Jim is a great photographer (check out jdschoettler.com), so you may enjoy some amazing pictures along the way.

If you look carefully at the website, I am on the "executive" committee (aka CEO, aka the Big Kahuna, aka the Face of cancer). Bio available shortly... Actually, I think my official title is "peon". Checks, of course, can be made payable to "The Joseph Lin Personal Fund". Just kidding! (Note: the preceding was a JOKE). The donation process is laid out easily on the website. Within a week or so, a comically gigantic needle will be sent to you. All you have to do is stick it in the meaty part of your thigh... Again, just kidding. Just check out the website.

Recently, besides me, another close friend of Jim's has had an urgent need for a bone marrow transplant and is now still currently looking for a donor. While I have been extremely fortunate to find my donor and be transplanted within six months, many people out there have had to search for years or have died in the search process. There is something like a 1 in 20,000 chance that a patient finds a perfect match and the odds are even worse for minorities and mixed races. I think I've said this before, but only one person has ever found a match through their own bone marrow drive efforts. The numbers of people registered in the National Marrow Donor Program (NMDP) are unacceptably low. So, please please please consider contributing to this cause, if not monetarily to help support organizations like CLLF and Dana Farber to fund drives and research, then to motivate yourself and others to be put on the registry. I obviously have been a beneficiary of such efforts of other people, and I would be remiss, especially as a doctor myself, not to encourage this.

Jim and I were roommates for three years at Stanford. He's a straight up good guy so I can vouch for him. His mother, our treasurer on this endeavor, was the former Lieutenant Governor and Treasurer of Colorado for goodness sake, so you can be sure the money is going to the right place. Jim's a free spirit and one of the brightest people I know. When he commits himself to hiking over 3000 miles and helping good causes along the way, you can be sure he'll do it. And Jesse, even though I don't know him quite as well, I know he is cut from the same mold. In fact, these guys have done similar hikes before. If you look up "Colorado mountain man" in the dictionary, well, you'd find a definition of a male who hails from the Western region of the Unites States where there are many areas comprised of impressive natural elevations above the earth's surface. No, of course, you would see a picture of Jim as the definition. He's ruggedly handsome, physically fit, and maybe even available. I tell you, if I were a woman (wait a sec...), I'd probably marry him on the spot.

Whoa, I'm totally getting sidetracked here... In all seriousness, please check out marrowtrek.org. And don't just check it out, make it your home.
It would rock my world.

Joe

Hemorrhagic cystitis?!

Hey everybody!

Tomorrow will be Day 50 post-transplant! Unfortunately, as you probably know by now, I got my first semi-serious complication last week with a CMV infection. The good news is I still feel good overall and I've been getting to come home in the afternoon/evenings the past few days. The bad news is that the CMV has not been completely eradicated and the virus was still detected in my bloodstream as of yesterday's blood draw. So for now, I have to continue with the twice a day IV ganciclovir and my next blood test for CMV will be Thursday. So please pray that this will be negative on Thursday. Ganciclovir is supposed to be very effective in treating CMV but has the bad side effect of decreasing my white blood cell counts, so ideally, I don't want to be on the medication for too long.

Now, we'll play scenario games again. Imagine this time that as a reward for a long, hard week at the office, you and your lovely wife enjoy Belgian chocolate dipped strawberries and mimosas on late Saturday morning after which you hop in your fire red Lamborghini and motor to the day spa. There you enjoy couples total body massage/facial/wax/manicure/pedicure/body wrap treatments given by Angelina Jolie and Brad Pitt (in my case, either one would suffice... you know, Brad and I would talk politics and sports). Then, you take your private jet to partake of a late lunch at, let's say, Spago, prepared by your personal chef, Iron Chef. You do some shopping on Rodeo Drive and buy a couple Rolexes or Pateks and consider buying a poodle to go with those fabulous Manolos. Now it's time to enjoy a romantic dinner at your favorite restaurant on Mars with an incredible view of Earth. You make it back just in time for courtside seats at the Super Bowl/World Series/Stanley Cup finals topped off with a private performance by the "All-Stars" of the world's greatest symphonies including a world premiere of a ballad written and performed in your honor by Luciano Pavarotti.

Now, let's change the scenario a little. Instead of chocolate and alcoholic beverages on a Saturday morning, imagine that you have to urinate; instead of a Lamborghini, you have to urinate; instead of total body treatments, you have to urinate; yep, instead of Angelina and Brad, urinate; instead of private jet, Spago, Iron chef: urinate. I think you're starting to get the picture. Welcome to the world of hemorrhagic cystitis!! Sounds fancy and complicated doesn't it?! It's really about urinating, and on top of that, there's some blood involved. Really I'll be sitting there minding my own business happily picking my nose or something as intellectual as that and suddenly, without appropriate warning, my urinary apparatus and brain will shout "You better find a toilet for me in the next three seconds or I'm going all over your pants buddy! One... two..." This happens every 20-30 minutes. In all seriousness, this hemorrhagic cystitis thing is supposed to be a fairly common complication after a bone marrow transplant. It involves inflammation of the bladder and can lead to urgency (feeling the need to pee all the time), frequency (going all the time), burning and pain (not fun), and hematuria (peeing blood... yikes!). It's rather disconcerting seeing blood come out, but fortunately, this whole thing is supposed to be self-limited. So for now, I'm told to drink lots of fluids and ride it out. Unfortunately, this thing can last up to six months (!) which would be a worse case scenario. Again, let's just hope and pray that my doctors don't have to end up putting instruments up my you know what and do "bladder irrigation."

So my advice to you: try to avoid getting hemorrhagic cystitis. And if you see me whizzing by you (pun intended), it's not because I'm being rude. Just get outta the way, okay?!

Joe

Home!

Joe was supposed to stay at the hospital until at least Monday or Tuesday. However, once again, his good behavior has paid off! Even though Joe is still CMV positive, there is evidence that he is definitely responding to the treatment. Add that to the fact that he is a doctor and an extremely compliant patient, and the outcome is home sweet home! Of course Joe has to go back to the hospital every single day again. But this is far better than spending restless nights at the hospital. The nurses mean well, but they were entering the room every hour or two, and flipping on the super bright lights without warning. Not so fun. So the plan is that Joe returns each morning for his first dose of Ganciclovir. Then a visiting nurse will come to our home in the evenings for the second dose. Hopefully by Monday, Joe will test negative, and then he'll just get one dose a day at the hospital. Thank you everyone for all of your prayers, love, and cards!

Now if you can please send a bunch of prayers to Amy and her family. They can use every prayer they can get right now. No, we do not know Amy or her family personally. Chances are, they don't have any idea who we are. But ever since her blog was shared with us, she has been in our prayers. She is a young lady of amazing strength and faith. We have learned a lot from her, and been inspired by her. Just pray, pray, pray!

Also pray for Baby Livi and family. She'll be starting her transplant procedure next week. That little girl is such a trooper. Not to mention she is too cute for words.

Thank you, thank you, thank you!

Back in the hospital

My dear Joseph is back in the hospital. This morning, we were preparing to leave for Joe's semi-weekly appointment at the BMT office. Before we left, we received a phone call. It turns out that Joe's blood draw from Friday showed that he tested positive for CMV. Joe would need to be admitted. The frustrating part is that Joe has been feeling great, and looking great. So even though it is very important that he gets treated before the CMV gets out of control, it feels like he is going into the hospital for no reason. The fact that Joe is feeling great is also a blessing. Being positive for CMV post-transplant can become very scary. But thus far, Joe has been asymptomatic. The positive result is most likely caused by reactivation of the virus.

The treatment for Joe will be aggressive. He'll probably be in the hospital for at least a week. Joe will be getting IV Ganciclovir every 12 hours, that will run for an hour. This will happen for at least four days. After this, Joe will get a dose once every 24 hours. Even after Joe tests negative for CMV, he will continue to receive Ganciclovir for another two to three more weeks. By that time, Joe should be discharged to short stay. But this will mean we'll be back to our former routine of going to the hospital every single day. If this is what it takes to make sure that Joe is okay, than so be it!

The wonderful thing is that Joe remains positive and in good spirits. He is a trooper, he is! It's definitely not by choice, but the hospital is now a second home for Joe. Sometimes we call it the slammer, sometimes we call it a hotel. Depends what kind of mood we are in. :) Joe is well prepared for this stay, with his PSP, ipod nano, books, and sudoku.

No worries. Joe is going to be just fine. God has blessed us through every scary bit of this journey, and this will be no different. Thank you for all of your prayers!

Happy Valentine's Day!!!

Traveling is really exausting. Especially when you are going from Fiji to Narnia to Outer Space in a matter of days. Fortunately, I have a very wonderful and loving husband who is on steroids. So while he has been merrily blogging away extremely silly things, I've been granted the opportunity to bask in the sun, get pampered at the spa, and gorge myself on turkish delight and astronaut ice cream. (Hey, Joe isn't the only one with a vivid imagination! Or to be more clear, all of the above, with the exception of the wonderful and loving husband on steroids part, is just in my head.)

Joe has been making me laugh and making me crazy all at once. He has really been loopy this week, as you can see from his blogs. It has been so entertaining, I'd allow him to completely take over the blog if he wanted! Then there is the behind the scenes stuff. He hinted at it in his last entry. Joe has gotten major re-organization fever. We knew it would happen once the steroids started. We didn't know it would take a few days for the craziness to begin! As soon as I leave a room, to shovel massive amounts of snow (bundle up, stay warm, and drive safely everyone!), or get groceries, or brush my teeth, Joe gets busy. And he doesn't stop. Nothing is safe. Just when I tell him that something looks great, I turn around to find that it has moved again. It is a good thing that Joe has a good eye, or I'd really have a headache!

Right after Joe's transplant, he would sleep at least 16 hours a day. Now he is like Mr. Busy Beaver meets the Energizer Bunny. He keeps going, and going, and going... Before, even before the transplant business, when Joe would go to bed, he would fall asleep instantly. Now, he gets all chatty and tells me long epic stories until I fall asleep. I am not sure what will happen when the steroids are tapered to nothing and the effects wear off. I imagine the house will be more peaceful. :)

Well, I am extremely grateful this Happy Hearts Day to have such an amazing husband. It is truly incredible that after all he has been through and continues to experience he is still able to remain positive and make others laugh! He is quite a guy. And let it be known that he is all MINE! Woohoooo!

Happy Valentine's Day everyone! Even if you believe that today is an overhyped, sappy, squishy day used by Hallmark and flower companies to earn massive amounts of money - at the very least make it an excuse to let your family and friends know you love them. I mean, even if you let them know every single day, it doesn't hurt to tell them one more time. It's more fun than boycotting a day to celebrate love, right?

And speaking of Valentine's Day. A very happy birthday to two Valentine's Day babies!!!!!!!
Happy Birthday Albert! You are a super little brother!

Happy Birthday, beautiful cousin Pei-chen!!!! You have been so sweet and wonderful.

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!!!!!!

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!

Happy Martin Luther King Jr. Day

We went back to the hospital this morning. Joe received some magnesium in addition to his usual bag of saline. His platelets are down to 14, so it is almost definite that Joe will be getting a platelet transfusion tomorrow. Joe is extremely neutropenic now. The doctor who has been rounding keeps stressing that this is a critical period. During this point of the transplant process, most patients end up being admitted to the hospital with fever/infection. It is almost like a rite of passage. But you still never know. A lucky few manage to sneak past this little detour. Let's hope and pray Joe is one of the lucky few!

The good news is that Joe has been eating a bit more since yesterday. Not only that, but most of the food he has been eating has been staying in his body for a normal-ish amount of time. Joe had been experiencing some diffuse pain in his belly for several days, and that is finally going away. Each day we see a bit of progress. The nurses and doctors like to remind us not to be disappointed or discouraged if there are setbacks along the way, or if Joe feels blah for awhile. Still, it makes the days easier to stay positive and celebrate the tiny victories. If we encounter setbacks we'll deal with them. Before that, it doesn't make sense to worry, does it?

All of our days are running together...

For most of the morning I kept thinking it was Tuesday, only to realize it is only Sunday. Each day is so similar, it is becoming difficult to keep track!

Just like the sun peeping through the clouds, Joe's silliness will reveal itself throughout the gloom of each day. He will say something completely ridiculous or cute that will make me laugh and reassure me that everything is going to be okay. To be perfectly honest though, the past few days have been pretty miserable for Joe. After he was discharged, he had little appetite (with the exception of Friday evening when he would sneak bits of food with a gleam in his eye.) Unfortunately, virtually everything that entered Joe would quickly exit in a most unpleasant manner. These past two nights have been rough as he has been waking up several times to dash to the restroom. Joe almost constantly feels nauseated. The drugs help, but they aren't perfect. It has been rough. It is so difficult to see Joe go through this, and I can only imagine how awful it is to live through it.

According to the doctors and the nurses though, Joe is just an average Joe. Everything he is going through is perfectly normal and expected for a post-transplant patient. It would be much more remarkable and interesting if Joe were to not experience any nausea or loss of appetite. So he pretty much just needs to bear with the blahs for a little while longer, then things should start to get better. Besides that, the doctors and nurses feel that Joe looks great considering he is five days out from a PBSC transplant. I must agree. (Not that I'm biased or anything.)

Thus far, Joe has managed to avoid any transfusions. This shouldn't last long, but we're happy to avoid them for as long as possible. Each morning we go to the hospital, Joe has his blood drawn and is given IV fluids. Yesterday, Joe didn't eat anything which was more or less suggested by the doctor. Today, he is feeling every so slightly better, and so Joe started to eat again. So far his lunch (congee/jook/rice porridge/mue/okayu/lugao/pick your favorite name...) has not made a reappearance in any form, and it's been a couple hours. This is a very good thing.

Now, Joe is happily perched on the couch, in front of the television, watching football.

___
Just to go back to transplant day briefly (or not so briefly!). As I mentioned before, everything went very smoothly. The donor had her cells harvested on Monday. Joe's transplant was on Tuesday. It is really interesting, because many years ago, Joe did a summer internship in a Lab at Allegheny General Hospital. There he met a gentleman named Don. After Joe started his residency at West Penn, he had the opportunity to go back to AGH several times for rotations or conferences.

One time, Joe decided to go back to the lab where he worked and see if he still knew anyone there. Don was still there!!!! Now here is the fascinating part. This year, Don started working at West Penn in a lab where they do all things bone marrow related. Turns out, he had seen Joe's name several times but never made the connection. That is until Joe returned for his transplant. Someone referred to Joe as Dr. Lin. Then it all clicked. Don went up to visit Joe before the transplant. Then on Day 0, Don personally delivered the cells to the room, and wrote Happy Birthday on the dry erase board. Don apparently knows a bit more about Joe's donor. But being the good worker that he is, and wanting to keep his current job, he hasn't revealed anything to us. Oh well.

For transplants, doctors aim to get 4-6million cells/kilo. (I hope I'm writing this correctly!) Joe's donor provided 10 million cells/kilo. The doctor gave the go ahead to give them all to Joe. So now we hope and pray that the donor cells thrive and set up camp in Joe, and the bad cells get booted. This is all creating a temporary mess in the Land of Joseph, but temporary is the key word. None of us can wait (Joe most of all) until he engrafts (that is, when the stem cells begin to grow and make cells) and then starts to feel better.

For now, it is all about taking it easy, and taking everything one step at a time. Fortunately, we have tons of help. We are now living in Hotel Mom & Dad. It has been great since we are all together. My parents have been visiting as well to provide added support.

As usual, we are feeling the love from everywhere. I can not stress how encouraging it is for Joe to know that so many people are keeping up with his status. I know that he is lovable and one can't help but want him to hurry up and get better. Joe doesn't always realize this though. So thank you everyone for making this just a little more clear for him!

___
A very Happy Birthday (a little early) to my dear pseudo-cousin Van. Have a wonderful time celebrating. Hope you find some time to relax and get pampered!

Happy belated Birthday to Joe!

Just a quick little update. I'll write more later...

Joe had his transplant yesterday. It was really incredbile. They hooked him up to a bunch of monitors. Out came a little bag with 251 mL of cells. The bag was hung. Fourteen...FOURTEEN MINUTES later, Joe had new cells floating around his body knowing exactly where to go. Joe was closely monitored for an hour after the fourteen minute transplant. All was well. He then had to continue to receive IV fluids for an additional 3 hours. After all was said and done, it was getting late. Joe could have been discharged, but since we have to be at the hospital every morning at 8am for thirty days anyway, he decided to stay another night.

Well, this morning, Joe's stomach was bothering him a bit more than usual. He was sent to get a CT scan. Apparently, he has some inflammation in his colon. Things like this are to be expected as his counts continue to go down. They were still going to let him go home. But then after the bigwigs discussed some more, they decided that they would like Joe to stay a little longer just to be safe. So, my dear Joe is still in the hospital. He's not too thrilled about being here yet another day. Who would be? But Joe is staying strong.

One more note, Joe received over 70 cards as of the time of his transplant yesterday. It came in two waves. Each delivery, the lady would go, "I can't believe it!" So much love for Joe!!!!

Thank you to Susan N. for telling everybody about the West Penn card site!
Thanks to Sheena for hanging out with me the other night.

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

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!

Day -3

Joe received the sweetest gift yesterday, and here he is posing with it! It is a baby blanket from Evonne, Thomas and Leah. Four years ago, Leah was born premature and had to stay in the NICU for 97 days. When the family was able to finally leave the hospital, this is one of the blankets they received. It has been a symbol of comfort and love for them as they also had an amazing network of people supporting them and praying for them. Now they've passed this blanket onto Joe. Beautiful, don't you think?

Joe was feeling much more nauseated last night. He finally accepted some Ativan, and was able to get his first good night of sleep since being admitted. This morning he was in much better spirits, although he still has a headache. Joe's definitely looking forward to watching some football today and tomorrow though! Also, his hem-onc friend Jay will be stopping by for a visit.

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.

Final Verdict.

I wanted to share a photo from a bone marrow drive at the end of November. Our friend Eddie, (who will always be a Pittsburgher even though he's now living in North Carolina) worked with Maria from CLLF and Pastor Elijah from Chinese Bible Church of N.C. to host a drive. We are so thankful to all three of them, as well as the church for their participation and prayers. If it weren't for all the people who are registering to be donors, Joe might still be searching for the right match.

Speaking of which...Joe's donor has officially been chosen, and the selection has been sealed! The winner is...the 21 year old female. Despite the initial doubts of the NMDP about her committment, she has been following through with all of her appointments. She was the ultimate winner because of her age, and because Joe's doctors prefer a PBSC donation to a bone marrow donation. (If you recall, the 37 year old male was only able to be a bone marrow donor.) Joe will be admitted to the hospital on January 3. That will be a tough day. Joe will be getting a bone marrow biopsy and a lumbar puncture. He'll also have a central line put in, and begin chemo. Joe will be given chemo for 5 days. On January 8th, Joe gets a "vacation day." At least from chemo. January 9th will be "Day 0" - transplant day. Meanwhile, Joe's donor will be getting five days of filgrastim injections. PBSC cells will be harvested on the 8th and the 9th. It won't be such a walk in the park for her either. We are SO grateful to her for doing this. Wow, everything is moving so fast.

Joe had his blood drawn today. Everything looks about the same. The good thing is that Joe still feels well, and there wasn't another drastic drop.

Thank you, thank you to everyone for being so loving and encouraging. As transplant day rolls near, and everything is actually being scheduled, we are realizing how real this is! Everyone has been amazing. Simply amazing.

Thank you to Mike & Amy, and Crystal for the fun gifts. You are each so sweet.
Thanks to mom and dad for the food! And thanks to Victor for playing with us and being such a great brother. (Awwwww...)

For to us a child is born,

to us a son is given,

and the government will be on his shoulders.

And he will be called

Wonderful Counselor, Mighty God,

Everlasting Father, Prince of Peace.

~Isaiah 9:6

The Latest

All the test went smoothly yesterday, and that's according to Joe. The day started off with a pulmonary function test. Joe had the privilege of sitting in a phone booth like contraption with a nose-clip. I was kind and didn't post the nose-clip photo! All went smoothly, and I was greatly entertained by the gentleman running the test.

Next we had a bit of a break to catch up on some emails and news (The oldest person in the world is 115, and male.) We then headed off to the nuclear medicine department. Joe had an IV put in, and lots of blood drawn. Then an EKG and MUGA scan. This was the longest part of the day. Joe had to stay in certain positions for what felt like an eternity. He's really good at staying still though. Sometimes, I call him Mr. Tin Man. I suspect Joe took the opportunity to nap for a bit.

The final part of the day was a history and physical. Joe has gone over his history so many times, that this took very little time. Then we were done! We were able to enjoy lunch at around 3pm.

In the evening, we discovered that Joe's counts are not behaving very well. The Vidaza seems to be losing its powers. Joe's Hemoglobin is the only thing that seems to be staying in the normal range. Helps him keep a rosy glow!

Joe's Counts
WBC - 2.4 k/mcL
Hemoglobin - 15.6 g/dL
Platelet Count - 61 g/dL
Neutrophils - 28%
Neutrophils-absolute - 0.67 k/mcL

We'll have to be more cautious than ever. Our goal is to keep Joe out of the hospital until he is admitted for transplant. We're just going to take one day at a time though. That's all we can do.

Speaking of transplant, here is the latest news. The 21 year old female was CLEARED yesterday. This means that she is okay to be Joe's donor. Because of her size and Joe's size, she will probably have to give cells two days in a row. Joe will have the transplant on the second day when everything is shipped from wherever she is in the United States. The 37 year old male donor should be having his physical tomorrow. One thing that we learned about him, is that for whatever reason, he would only be able to do a bone marrow donation, as opposed to a PBSC donation. This changes the process for the donor, but shouldn't affect Joe too much. If the male is also cleared, then a final decision will be made as to who Joe's donor will be.

As far as dates are concerned, Joe will probably be admitted January 2nd or 3rd. The transplant will likely be on the 8th or 9th. This is only two weeks away!!!!! We are feeling so many different emotions. I'm not sure there are any words to perfectly describe what we are feeling. We are more than hopeful that all will go as smoothly as possible...or smoother than possible. We are glad that things are moving forward, but there is some anxiety mixed in there. Excited doesn't really fit the bill, since there are still risks and unknowns involved. I don't know. But I feel sure that everything will be okay. Thus far, everything has gone as well as can be, except for those silly counts suddenly deciding to go crazy. God is control, right? Yupyup. For sure.

A very happy happy belated birthday to dear Colm. Praying for you, your daddy, grandpa, and the whole family.

Happy belated birthday to Sabrina! I didn't realized you had the same birthday as Richard. How sweet!

Happy happy birthday to Alivia's mommy Emily. We are constantly praying for you.

"How will this be," Mary asked the angel, "since I am a virgin?"
The angel answered, "The Holy Spirit will come upon you, and the power of the Most High will overshadow you. SO the holy one to be born will be called the Son of God. Even Elizabeth your relative is going to have a child in her old age, and she who was said to be barren is in her sixth month. For nothing is impossible with God."
~Luke 1:34-37

Tests, tests, tests...

Tomorrow is Joe's pre-BMT testing day. He'll get all kinds of fun tests uncluding blood tests, a pulmonary function test, and an EKG. It'll pretty much be a full day. Hopefully soon, we'll be able to set a definite date for transplant. It is so weird to think that right after the holidays Joe will be getting a transplant. Just saying it sounds weird. It just doesn't feel normal to say something so huge, in an almost casual way...about my husband! "Oh my husband needs a PBSC (bone marrow) transplant." What? It feels like something that should be said about the uncle of a friend of a friend. Or something you read about in Reader's Digest. But alas, every person who has to face any type of transplant, or chemo, or other hospital related yuckiness is a brother, or sister, or parent, or child, or spouse, or friend to someone. And I would hope...and I pray...that the families that deal with such things are close and have as great a support system as we do. How scary and sad it would be to face such things alone.

I'll update on Joe as we get more information.

Hmmm. Lots of thank yous. Thank you so much to Jomei and Vivian for such a fun girls day on Thursday. I had so much fun with you!

Thank you to Joe for allowing me a day with the girls. I know you not so secretly enjoyed those hours of peace and quiet, but I still appreciate it!

Thank you to Steve & Lora and Monica & Brian for contributing to a fun filled weekend! We really enjoyed the time we got to spend with you.

Thank you to Louis and Karen & Steve for the fun gifts.

Thank you to our parents for all the goodies and treats!

And...a HAPPY HAPPY HAPPY (belated) birthday to my dear cousin Richard. I haven't see you in SO long, and Joe still needs to meet you! Hope you had fun!

Also, a very Happy birthday to Luke!

(and go steelers! :) )

"He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever, his kingdom will never end."
~Luke 1:32-33