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. :) )

Keep up those prayers!!!!!!! (please)

Saturday...
Joe was started on Vidaza once again (a quarter dose like the last round). This was day two of round 2, post-transplant. On weekends the BMT office is closed, so Joe has to go to short stay. All of the nurses in short stay know us very well. It wasn't a very eventful day. For the last round of Vidaza, Joe had a line and thus he took advantage of the fact that Vidaza has been approved for IV administration. This time, since Joe doesn't have a line anymore, he has gone back to getting subcutaneous injections. With the quarter dose it is just one shot...not so bad, says the wife who isn't getting poked!

Sunday...
Joe had his blood drawn. Being a chemotherapy, Vidaza made Joe's counts even lower. Plans were made for a platelet transfusion to take place on Monday.

Monday...
The plan was to go to the BMT office. There we thought we might wait for 15, maybe 20 minutes for Joe to be called back to receive his Vidaza shot which would take a good 5 seconds. Then we would head up to short stay where we would wait about an hour for Joe's platelets. Platelets are fast, so the transfusion would take at most 15 minutes, and then we would be on our way home. We figured everything would take 2 hours...maybe 3 if things were really crazy. This is what we THOUGHT, because after months and months of going to the hospital and being given the opportunity to take full advantage of the WAITING rooms...we still haven't learned our lesson.

What really happened is that we went to the BMT office and waited for two hours before Joe was called back to receive his Vidaza shot which took all of 5 seconds. Then we headed up to short stay where we only had to wait about 15 minutes before Joe was taken to his room. At this point we were told that his platelets would arrive in an hour. Well, an hour came and went with no sign of platelets. Then a lovely nurse came and told us that they were informed that the platelets would arrive in 20 minutes. Apparently they were to arrive with the 2pm driver from the Central Blood Bank. Joe's platelets were not with the 2pm driver. We had to wait for the 3:10-3:15 driver. The 3:10-3:15 driver did not arrive until about 3:40, at which point the hospital people had to process it and such. Joe finally received his platelets at around 4pm. And yes, the transfusion took about 15 minutes. We waited over 5 hours for two procedures that took a total of 15 minutes and 5 seconds. The positive thing is that I was able to do plenty of reading and crocheting, and Joe was able to do plenty of reading and napping. The Benadryl that Joe was given before his transfusion did a great job of making him drowsy. The other positive thing is that Joe didn't have any reactions to his transfusion.

Today...
Today Joe had another blood draw. Everything was low again, which was expected. We also met with the doctor. Joe is going to be getting Vidaza each month again as a sort of maintenance. This sounds like a good idea right now. The not so great news is that after two negatives, Joe's Sunday blood draw showed that he is CMV is positive once again. That darn CMV loves to pop up and cause trouble all the time! Joe was already due for another dose of Cidofovir on Thursday. That will go as planned. Hopefully that will work to make that pesky CMV negative once again. If not then Joe might have to begin a combined therapy of Ganciclovir and Cidofovir.

The other thing is that Joe's rash started to flare up again. It is not too bad yet, but everyone would like it to stay "not too bad yet." So Joe's steroids were increased yet again. Not too high, but it already seems to be helping.

We are still smiling. In fact, on Monday one of the nurses said, "I think the two of you look happier every time I see you." Today, Joe's doctor said, "The two of you are always so positive." He thinks that all of this positivity has helped Joe to not look or feel as bad as many patients would during the "downs" of all the "ups and downs" Joe has been through. I think that it's true. One of the big things Joe and I have learned during this journey is that there is no point in worrying before you have to worry. And actually, with each "down" we experience, we are learning that there really is no sense in worrying then either. Worrying makes you feel miserable, it causes you to lose sleep, it gives you wrinkles, and in the end none of your problems are solved. Being positive makes you happy, allows for plenty of beauty rest, makes a better impact on others, and allows you to enjoy life despite all odds. :)

Thank you everyone for all of your prayers and all of the positive energy you've directed our way. Knowing we have so much love and support really helps us to continue to stay postiive.

Who of you by worrying can add a single hour to his life?
~Matthew 6:27

Uh-oh...:)

It may be starting. Joe just might be losing his hair. Maybe. Yesterday, before and after his post-hospital-visit shower, I noticed all of these loose hairs on Joe. We then discovered that of all places, Joe was starting to lose hair from his armpits! It was just sliding right out. Joe then decided to test the hair on his head. That stuff is much more stubborn, and yet Joe was still able to pull out tiny little tufts of hair. We buzzed Joe's hair yesterday afternoon since it was getting really shaggy. Joe is really fascinated by the prospect of becoming completely bald. He seems to be encouraging it by randomly yanking at the little hairs on his head. Still, it looks pretty thick up there. Today, there were fewer loose hairs. We thought maybe he would wake up to a pillow covered with hair, but that hasn't happened yet. There was just one lonely hair, possibly two! We shall wait and see.

Joe's nausea and belly pain has pretty much vanished. To replace those ailments, Joe now has a very stubborn headache that appears throughout the day. Also, he is starting to develop sores in his mouth that are irritating. The one positive thing that has resulted from the mouth sores is that Joe has an excuse to eat popsicles. His nurse suggested it this afternoon, and Joe was very excited about it! Another praise worthy thing is that even though Joe's last platelet transfusion was a bit of a nightmare, his counts went up! Yesterday it was 40, today it was 45. Joe's hemoglobin level is steadil decreasing, and we're anticipating a blood transfusion within the next week.

Some happy news about one of the girls we've been praying for. Amy is more than sixty days out from her transplant, and her thirty day bone marrow biopsy showed that she is 100% engrafted. Woohoo, and Praise the Lord! Also, pray for Alivia and her family as she will be undergoing a splenectomy in a few days, and a transplant a few weeks after that.

A very Happy Birthday to John of John & Carole, TK, and Kelly from small group who celebrated birthdays recently. And a very Happy Birthday to SuAnn who should be celebrating today!

Thank you so much Janet & Frank, and Aunt Vivian, Zim, & Yim for your generous gifts. You are all so very thoughtful and sweet.

Thank you to all the wonderful people who have been flooding our mailbox with cards! We really appreciate your support.

And a super giant THANK YOU to Greg who is absolutely the best neighbor in the world. If there is such thing as a best neighbor award, he should get it. Greg, you have been so incredibly helpful, we appreciate it more than you'll ever know.

Long day.

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

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

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

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

Sixty-six!

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

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

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

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

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.

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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!

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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!