Monday Day 33

Dad continues to do well. He had blood work done today and the white blood cells are still creeping in the right direction as are the platelets, but the red blood cells are a bit slower and are doing the up and down thing. He continues to feel good and is eating well.

This morning he also had his PET/CT scans. We won't find out the results of those until Wednesday morning. I'll post something after that visit. Then we have a visit with the radiologist on Friday.

Day 28 Wednesday

We went up to the Med Center today and Dad got his Hickman catheter taken out. Other than he had to wait 1 hr. and 45 minutes past the scheduled time, everything went well. A P.A. in intervention radiology took it out and she did it just in one of the bay areas in pre-op...not in a surgery room. It just involved numbing the area around the catheter, taking the sutures out, wiggling the catheter at the exit site, and then pulling the tubing out. After it was out, she applied pressure to the area for 10 or 15 minutes. Dad needs to keep a gauze bandage on it for 2 weeks and can't get it wet...so we'll cover it up with a water proof bandaid before he showers. He can't sleep on that side (his left) for a day or two, because it could cause the clot to dislodge and it could start bleeding, so he'll sleep in his recliner for a few nights just to play it safe.

The PA told Dad that she remembers only 10 years ago, when anyone had a stem cell transplant, that they would have to stay in the hospital for 100 days. They have sure come a long ways in that short time to improve things....and to think that Dad got out of the hospital on day 11. It sure shows the value of research! They still have carried over the 100 days notion though...the next appointment Dad has with Dr. Bierman is on day 100.

I chose not to be in the room when they pulled the catheter line out, so I waited out in the surgery waiting room. I was wondering how much longer it would be...since it had been over a half hour and that's about what the PA said it would take. So when I heard the gal at the reception desk talking about "Mr. Sawatzki" I thought they would come tell me to head back to his room. There was a guy talking at the desk so I waited until he was finished and then I went up and said that I heard someone say Mr. Sawatzki. She said yes, she did, but that's all she said. So I asked if I could go back to see him and she said that the guy that had been talking at the desk was heading back. He stopped in his tracks when he heard me talking about Sawatzki and I looked at him and I said, "Wait a minute...is your name Sawatzki, too?" and he said yes. The receptionist then asked me to spell the name and when I did, the guy said "that's right"....and I said..."you're a zki??" And he asked me if I was a Sawatzki. We both about flipped. I mean, what are the odds that 2 people with the very uncommon name of Sawatzki would be in the surgery waiting room at the same hospital at the same time????!!!!! Well, we had a nice conversation and it turns out his great great Grandparents were Johann and Anna Sawatzki...so his great-grandfather was great-grandpa Tony's brother. He said he might have some interesting family information for me, so we exchanged emails...and I just marveled at the smallness of the world! And to think...if Dad's procedure would have been on time (and not almost 2 hours late)...I would have missed this Sawatzki connection!

After Dad was released, it was a bit late for the massage I had lined up for both of us...so I bowed out and let Dad have a foot and hand massage that he really enjoyed...so he ended the day very relaxed...although he was very relaxed during the whole pulling the catheter procedure.

Day 26 Monday

Dad had blood work done today and FINALLY his platelets are up!! He was looking for the 50 mark on the platelets and today it was 70!! So the catheter will come out on Wed. ...with the procedure being done at the Med Center. He is really looking forward to getting that out.

All his other blood counts have also finally taken an upward swing. White blood cells went from 2.3 to 2.97 (normal is 4-11), red blood cells went from 3.6 to 3.8 (normal is 4.3-5.9), hemoglobin went from 11.3 to 11.5 (normal is 13.3-17.3) and platelets from 46 to 70 (normal is 150-400). This upward swing is no surprise...on Saturday Dad said he felt better than he has since the transplant process started.

We got home and took a nice walk. I'll let you know how the procedure to remove the catheter goes on Wed. afternoon.

Day 23 Friday

Finally I get back to posting on this blog. You would have thought I was on vacation! Let's see...going back to the last post on last Friday and our arrival home. It has been so nice being back home. Dad has adjusted well to being back, in fact, on Saturday he even ate some lunch...which he hadn't done for several weeks. He's basically been taking it easy and resting/napping when he's tired. We've been going for walks around the neighborhood, enjoying the fresh air that we didn't have while at the Med. Center. It's just very liberating to be able to go outside whenever you want...sometimes you take that for granted, but after being without it, we appreciate every breath of that outdoors air.

On Tuesday, Dad went to his oncologist here in Lincoln, but he wasn't able to see his regular doctor (Dr. Hutchins) with such short notice, so he saw the PA. All the nurses there were amazed to see Dad looking so good. Each time he saw a different nurse, they each told him he looked great (of course, he ate that up!). In fact, one of the nurses apparently told Dr. Hutchins that he needed to get in to see Dad because he looked so good! So he did come in for a short visit. We got the name of an oncology radiologist to see and then they set up a time for a PET/CT scan (May 23).

Dad's blood work today didn't make the mark on the platelets...they were up quite a bit...43 (from 28 last Friday)...but still not to the 50 mark...so the catheter stays in for a bit longer.

Wednesday morning, one of the nurses at Dad's oncologist's office called and told me that she and the rest of the office staff were truly amazed at how good Dad looked. She said she has seen quite a few people who have gone through a stem cell transplant and she hasn't ever seen anyone look that good at that stage . She said usually people come in the office with not much color, looking ashen and gray, but she said Dad had good color and just looked great. That was good to hear that from her.

Also, on Wednesday, we drove up to Omaha for my physical therapy for my shoulder at the Med. Center and then afterwards I had set up an appointment with the massage therapist who works at the hospital (particularly with cancer patients). I had a 20 minute neck massage (badly needed!) and Dad had a half hour session mostly concentrating on his feet and hands. He really enjoyed it (and so did I!).

Yesterday (Thursday), Dad had more blood work and we thought for sure that he would reach those platelet numbers...but they were at 46...so again, not quite enough for the surgical procedure that's required to remove that catheter line. We'll try again next Monday (with blood work) and we have an appointment set up to get the catheter removed on Wednesday in Omaha...so hopefully that will work (only if the platelets reach the 50 mark). The rest of his blood work is just sort of hovering, but they aren't concerned about it at this stage...I guess it just takes time, but it's amazing that Dad's feeling as well as he does with those counts down still.

It was time to change the dressing on his catheter line on Tuesday, but we kept thinking that he would be getting it out sometime this week, but since that didn't work, I had to change the dressing yesterday. I luckily had all the supplies needed (rubber gloves, alcohol wipes, a scrubbing sponge to clean around the "exit site" of the catheter, and a clear dressing with tabs to adjust around the whole area). The worst part was taking the old dressing off...it was stuck on pretty good...but it went fine. Hopefully, I won't have to do that again as long as he gets the catheter out next week

So the basic plan is for Dad to have blood work done twice a week through June 7 when he will meet with Dr. Hutchins. In the meantime, he will have the scans on May 23 and then meet with Dr. Hutchins on May 25 and then with the radiologist on May 27. I'll be keeping you posted as to the catheter removal and blood work next week.

Day 16 Friday

The excitement mounted today as we waited for our visit with the doctor to hopefully finally get discharged "formally" from Dr. Bierman at the Med. Center and to get our "going home" papers. We loaded the car with our worldly possessions from Laura and John's house, with the help of John. Dad, as master car packer, did his thing. Our appointment was for mid-afternoon and when the doctor finally came in, he gave the nod to head home! He again said that Dad had done as well as anyone has ever done with this transplant and said he looked great. So Dad was discharged from his care and will now be under the care of his oncologist here in Lincoln. The first order of events is to get some blood work done to see when those platelets tell the story that it's ok to have the "tassles" (hickman catheter) removed. The magic number to reach on the platelets is 50. Dad's platelets hung on 18 for 3 days and then finally yesterday they jumped to 28. So he just has 22 more to go and then we head back up to Omaha to have the catheter removed. So I'll call Monday for an appointment with Dr. Hutchins here and hopefully by Wed, we'll be heading to Omaha to get that thing out. Dr. Bierman said that since the catheter was coming out, I didn't need to bother flushing the lines over the weekend. That was just fine with me. I was prepared...I had been practicing on him several times over the last week, but I was glad to hear I'm off duty.

Dr. Bierman said no restrictions to Dad...just to rest when he's tired...and that it will take awhile to get full strength back. He said that he wants Dad to go to an oncology radiologist as will be recommended by Dr. Hutchins (Dad's oncologist here). In around 3 weeks, Dad will get another PET/CT scan to see how things are...and most likely, with the consultation of Dr. Bierman, he recommends following this whole thing up with some targeted radiation. He described it as after you have a cake nicely made, you top it off with icing...to make it even better. The radiation would be to make sure there is no trace of anything unwanted. He wants Dad to recover from the transplant for around 3 -4 weeks first, though. So we'll see what plans Dr. Hutchins has for regular blood work, etc. the first part of this next week.....but for now....we're FREE TO GO HOME!!!

It was very exhilarating to head down that road to Lincoln. It's been over a month since we've been home...and as absolutely great as it's been to be staying at Laura and John's (it has been wonderful...feeling so much at home there. And we've had so many great conversations with them...always enjoyable. In fact, Dad and John, I believe, HAVE to have solved all the problems of the world (maybe, the universe!!) with their many conversations (including Nebraska football!!). They have had a great time visiting from the early morning hours to late evening. It has been indescribably wonderful staying with them...we just love them so much!) In spite of all that, it was still wonderful seeing that road ahead of us to Lincoln...and also seeing the road to Omaha behind us. Lenny, this picture is for you:

And yet another photo as we were on I-80:

It was great to pull into the driveway and great to see Sara! Inside she had a beautiful bouquet of flowers waiting for me and a balloon bouquet for Dad. I'll post a photo of that tomorrow!

I was falling asleep in mid-conversation at about 8:30 so I was ready for bed by 9:00 and Dad was still content to stay up! But we all ended up going to bed around 9:00 or 9:30. Ah, sweet repose!

Day 15 Thursday

Nothing much to report today. Dad is doing fine. The only medical happening today was to get Dad's catheter lines flushed, so not much to that. Since there's not much to report today, I'll post a picture that I took maybe a week ago of Dad. I call it "the Stigmata". It's the darndest thing...as Dad's hair was growing back (before he just lost it again!)...a letter "T" grew back with dark hair. He never had that before so go figure. I showed the PA and told her it was "T" for "transplant". I thought she was going to choke laughing.

Here's the amazing picture: (click on it to make it larger)

Day 14 Wednesday

Dad is doing good again today. Last night he ate a good dinner and this morning he had a good breakfast so he's ready to face the day! It has been so nice staying at Laura and John's place and they have been so gracious with their amazing hospitality. They definitely have the "mi casa es su casa" philosophy! And we have been enjoying the conversations with them immensely! We never run out of things to talk about! When we first got here, Stinky (their French bulldog, for those of you who don't know them) wanted to check out Leo and I...he's a friendly, curious dog. He also gets excited and jumps up on you to say hello. With Leo's low platelets we didn't want him to bleed to death with any scratches. So we determined that it was easier to surround Leo with a protective "corral" than to exile Stinky to a small area. So the result is that Leo is in the "penalty box" when we're sitting in the living room, visiting. It works well. It has a comical appearance and so I thought I'd include it.

And here's the culprit, himself! Stinky.

It's a face you just have to love!

Dad had bloodwork done today and counts were down a bit, but he's not getting the neupogen shot anymore. Nothing to be alarmed about...the fluctuation is to be expected says the doctor. Dad got a nap in today and ate a good dinner tonight.

Day 13 Tuesday

Today was a much better day for Dad. He woke up and had a good breakfast...loading up on potassium with OJ, apricot nectar, and had some coffee and French toast. I forgot to mention that yesterday when they did his blood work and vitals, he was partially dehydrated. So he's been doing a better job of drinking fluids. Back to today...we went back to the Med Center for blood work...everything improved except the platelets stayed the same. We saw the doctor...his original doctor, Dr. Bierman, whom we haven't seen since before the chemo. He was very impressed with how Dad was doing. He told Dad that he has done as good as anyone has ever done with the transplant. In fact, he also said a bit later in the conversation, that Dad had done "spectacular", which was a lot for him to say. So those were very good words to hear.

We came home and Dad took a 2 hour nap and then ate a good dinner. What hair he was growing back, has fallen out so he has the chrome dome effect...which is the very least of his concerns. He goes back in tomorrow for blood work and then more blood work on Friday and a final doctor visit. The doctor said that if all is as well as it is today, we can go back home on Friday afternoon and then Dad will hook back up with his Lincoln oncologist. He will return to Omaha whenever his platelets are at 50 to have his catheter line removed.

Day 12 Monday

We did get moved out on Sunday, with the great help of Laura. By the time we got to Laura and John's it was late afternoon and Dad had not slept all day...no naps. His usual schedule is to sleep about 4-5 hours a day plus his night time sleep. Needless to say, the move was a bit much for him. And I didn't let him do any packing except to put his shirts and jeans in his suitcase. I emptied out the rest of the room and then Laura came and helped load things on the cart and into the cars (ours and hers). Besides being tired, Dad's throat was coated again with those cells that are trying to get back to normal in his throat and his entire intestinal tract. The cells sort of build up and get sort of thick and then it makes him nauseated and he usually coughs it up (sorry, this is the not so pretty stuff). Unfortunately, he had an episode shortly after arriving at Laura and John's and he felt so bad about it, but Laura and John were so nice about the whole thing. Dad refers to this event...or the sound produced...as Beelzebub...or the devil incarnate. For me, the sound resembles something out of The Exorcist. Any way you put it, it's not a particular pretty sight. So after that, Dad didn't even eat dinner (in fact, he hadn't eaten lunch either) but he just went to bed...that was about 7:00. He slept until 6:30 the next morning.

Day 11

Dad saw the doctor this morning and he's been discharged!!! We have been packing for several hours and are now waiting for the nurse to come and show me how to fill a syringe and flush Dad's catheter lines...along with any other instructions. We will be staying for a day or 2 at Laura and John's since the doctor said it would be good to stay closer for a day or two. And Dad has to be at the treatment center tomorrow to get another neupogen shot and have blood work done.

Dad's white blood cells were up today to 2.6 or close to that (I have already packed the record book!). I will post later to let you know how the discharge went and how Dad's doing with the move.

Flowering Crab Photo Update

Sounds like you might make it back to see the tree, yourself, Dad! :-) 

Day 10 and GREAT news!

Dad's blood work today showed that his white blood cells went from a .2 yesterday to a .9 today so they are definitely starting to kick in. His red blood cells and hemoglobin increased and that was without a transfusion. His platelets increased from 7 to 24 which is excellent! The only thing is his potassium is still low. So the doctor has put him on potassium pills and we'll see how that goes. They said to eat potassium rich foods...like bananas, potatoes, avocados, and Gatorade. I looked it up and avocados have more potassium than a banana or a potato. Dad immediately thought of Laura's guacamole...the best guacamole ever! So I called Laura and she was happy to make some...I'm sure she's making it right now as I'm writing this. She will call when she has it made and then she and John will pop over to deliver it and to have a visit. We're looking forward to both aspects of this!!

Now here's the great news. When the doctor came in today he told Dad he didn't need any more of the daily medications that he's had to take...an anti-viral and anti-fungal medicines. He's just continuing the antibiotic til the end of today. He put him on the potassium pills. AND....he said that Dad is doing so good, that he may be discharged tomorrow or Monday!! He said that if his bloodwork looks good tomorrow that will help decide the day. At that point, Dad will be an out-patient for a week and a half...going in 2 to 3 times a week. We'll know more tomorrow morning when we see the doctor. For now, we're extremely happy!

Day 9 PM

The platelets today had to be concentrated (they removed the plasma from the bag) so it took longer. Dad finished getting the platelets around 3:30 and he didn't have any reaction to it. He also got potassium and that is still dripping in (slowly). It should be finished around 7:00 tonight. He's been sleeping most of the afternoon, possibly from getting benadryl early this afternoon as a pre-med to the platelets. Hopefully he will be hungry for some dinner. He wasn't hungry for lunch, but then he ate a good breakfast.

Day 9

Yesterday's blood transfusion went without a hitch. It took about 5 hours and Dad slept pretty much through the whole thing. He walked another 1/4 mile in the evening, hanging on to some wheel chair handles for support and me, dragging the iv pole along behind. He ate a small amount of turkey and mashed potatoes for dinner.

Yesterday, this sign was posted outside our room door. It means that you are at added risk of falling. They should have put it up about 3 days ago, but didn't. When I asked the nurse about it, she told me that nothing else was off today...just that it should have been up before...and then she said, actually, it should be because he's a star patient. We'll take that approach!

Today's blood work showed that Dad needed platelets and potassium. So we're waiting for the platelets to arrive. They are "concentrating" them to try to avoid any reaction (along with Dad taking the obligatory tylenol and benadryl before hand, too). The potassium drip takes 4 hours...so there goes the day again.

Good news, Dad woke up this morning and the first thing he said was that he was feeling better. He felt like the "white army" was at work. Sure enough, when we went down to the treatment center and got his blood work, his white blood cells showed the first signs of increasing. They went from a .1 to a .2. It's a step in the right direction!

Dad ate a good breakfast, eggs, oven browned potatoes, OJ, grapefruit juice, coffee. Again, the doctors were impressed with that, as that is apparently uncommon for most at this stage. Dad got the approval to get his saline iv removed...so at this point, his dancing partner is gone. And he got the go ahead to go outside for some fresh air. Unfortunately, when we did get outside, it was a bit too windy and chilly, so we're waiting for a bit of sunshine. At least the "umbilical cord" to the iv pole has been cut. I'll post later to let you know how the platelets went...hopefully it will be good.

Day 8

First I'll fill in on the rest of yesterday...day 7. The platelet transfusion did not go well. Dad had a reaction and they had to stop that transfusion and give him steroids to counter the welts and itching. They decided that they would not give him the red blood transfusion either...it would have been early evening when he finished, so he just came upstairs instead. We walked a half mile before settling down in the room. Since he was really low in all counts, he just slept solid all afternoon. I had to wake him at 7:30 to see if he wanted anything for dinner (he didn't have anything for lunch but a few bites of banana). Dinner didn't go over too well...he ate a few bites of soup and some peaches...but at least he ate something. He had no problem getting to sleep for the night around 10:00.

Now on to today. Expectedly, his red blood count was way down, so he is currently getting the transfusion. He will have 2 bags and it takes about 2 1/2 hours per bag. Before going down to the treatment center, he said he would try some breakfast and ate some scrambled eggs, OJ, and pineapple...so that was really good! His speech is a bit less slurred (from the lining in his mouth being swollen) so I think that is improving. He looks a bit better today, even though his blood count is down.

This morning, the physician assistant came in first and said she was amazed at how good he was doing. She thought the walking was helping immensely. And she called him her "star" patient. Dad told her if he was her A+ student, he hated to see what the C- student was like. When the doctor came in he was amazed that Dad had the breakfast that he did today...he said that he was doing really great and we should start seeing the counts go up in a few days. The nutritionist also was amazed at how Dad was today. So those were all good things to hear.

Day 7

We're still basking in the warmth of a signed message from Jeff Bridges yesterday! Sara, you are amazing to attempt such a request!!

I didn't get back to posting after yesterday morning. Yesterday's blood results yielded no necessary transfusions. Dad's temperature throughout the day dropped .2 of a degree each time I checked it...so by 10:00 last night, his temp was down to 100.2 so it's definitely going in the right direction. Yesterday was not a great day for him though...other than the fact that it was one day closer to feeling better. Nausea was a problem and the lining of his mouth is showing the effect of the chemo. Everything in his mouth is just sort of swollen and thickening. His speech was slurred a bit because of this. It affected his appetite...which wasn't much except the breakfast...just some yogurt and some apricot nectar for the rest of the day. We did manage to walk 2 times ...1/3 mile in the morning and 1/4 mile in the afternoon. By evening, he was too tired to do another....but that was a good walk for day 6.

He's still on the antibiotic and a saline drip so his dancing partner is here to stay for awhile. He had a fairly good night last night.

Today, when he woke up, he had bitten his tongue during the night (because it was swollen like everything in his mouth) and since his platelets are low, has a blood blister and also on the other side of his mouth is a mouth sore. This is common, too. So he needs to "swish" (use a particular saline mouth wash) more often to help. Until those white cells start producing, it will just be a situation of keeping a watch on it.

He wasn't very hungry for breakfast, but managed to eat some canned peaches and some decaf coffee. We then went down to the treatment center for the usual doctor visit and found out that today he needs a platelet transfusion and a red blood transfusion. The doctor said they were going to fill him up...and Dad asked if they were going to change his tires, too. The doctor keeps saying that Dad is doing very good. He said that day 5-8 are usuallly the worst, but that Dad was doing really good with his walking...and he was totally impressed that Dad ate an omelet yesterday along with grapefruit, OJ, hash browns. The doctor said for day 6 that was amazing...so I don't think he has seen that much.

So right now we are waiting for the blood to arrive. It will take about 4 hours for the red blood and about 1/2 hour for the platelets...so that will pretty much take us up to dinner. This is an example of how fast our days can go. So the plan is, while Dad is getting the transfusions, I'm going to physical therapy for my shoulder for 1/2 hour and then I'll escape and go to a grocery store up the street to get him some different toothpaste, since the one he has now isn't sitting well with him. Since Dad will be getting a treatment and monitored by nurses, I can be relieved of duties for a short time.

The nutritionist came in today and I asked her about alternative ways for Dad to get protein (yes, Sara, I'm onto the "p" word) and she said the kitchen had a protein drink that is not thick like a milk drink, but rather a fruit juice drink. So we'll give that a try. I also asked if there was anything to drink to help lessen the thickening or coating in his mouth and she said she has heard from several patients that hot tea and honey helps...so we'll be trying that late today. She also said that given all that's going on...that Dad looks way better than most patients on day 7...so that was good to hear. The doctor has said it, too, but it's nice to hear it from someone else!

Also, this morning, since it's day 7, Dad got a neupogen shot which will start to boost those white blood cells. It probably won't show up in his blood work for 2-3 days. He will get another shot tomorrow, too, and I'm not sure if it's every day after that...or not. One day at a time.

And now for something completely different...

Hey Everyone....this is Sara here and I am commandeering this blog for a post.

A lot of you know this already, but for those of you who don't, I've started up a side blog for a project I call "The Dude Abides Project."

Back in my first century bike ride in Maryland in 2009, I had some temporary tattoos created that featured dad with his freshly shaved head and sunglasses with the words "The Dude Abides" above it. This phrase, in case you don't know, comes from one of my family's favorite movies, "The Big Lebowski" starring Jeff Bridges. It's shocking if we get through a holiday without at least 100 references to this movie.

Anyway, I'm basically getting people to print out the logo and take pictures with it around where they live. So if you want to participate email me at saratzki@gmail.com and I will send you what you need!

Today, I received an extra special edition of a Dude Abides submission. From the original Dude himself, Jeff Bridges. You can read about it here:

http://thedudeabidesproject.blogspot.com/

And you can see it below. He. Is. AWESOME.

Day 6

Leaving off from yesterday's post....I finally had to wake Dad about 3:30 so I could order him some food. I took his vitals first and his temperature was at 102.6...yikes! So I called the nurse and she came up right away and got him on an iv bag of sodium chloride (saline). He wasn't the least bit hungry but managed to eat a few bites of soup, cottage cheese, and a few bites of pears. They keep saying how important it is to at least get some food down the gullet. The chemo has stripped out the lining of the stomach and that's why he has diarrhea (everybody gets that at this point). It's important to keep food flowing through the system so it starts to return to its normal state when the cells begin to start forming again.

The nurses change shift at 7:00 so the evening nurse came up right away to touch base about Dad. His fever around 10:00 was 102 so it was heading in the right direction. By then the drip of saline had finished. They hesitate to give tylenol to lower the temp because it can disguise the problem...it can take the fever down with the cause still in effect. They do have an upper limit ...and then they would use tylenol...but Dad's temp wasn't to that level.

The night nurse, Pat, is very nice and helpful. She said to give her a call anytime. It wasn't that much later and I had to call her again. I took Dad's blood pressure and it was 98 over 55 and when that upper systolic number is lower than 100...you call the nurse right away. So Pat came up and took Dad's blood pressure sitting, laying, standing...and determined that the lower pressure was most likely from dehydration (since he is losing fluids with diarrhea, and with his fever...the body uses fluids with a fever to try to cool off the different organs. The body is so amazing!) so she got a bag of saline to drip throughout the night and into the morning.

All Dad really wanted to do was sleep all the time (which Pat said was normal since his white blood cells are gone and everything else is low and the fever causes that, too), but it's very important for him to walk if he can for his lungs. A person is very prone to pneumonia when sedentary. So Nurse Ratchet went into second gear and got him out of bed to walk. We borrowed a wheel chair and Dad held on to the handles and pushed the wheelchair ...for a bit of extra support and in case we got down to the end of the hall and he felt light headed. So we walked the hall here on our floor. Amazingly, Dad walked 4 or 5 passes and just gutted it out, even though he would have loved to be lying in bed. That was at 6:00. At 8:00 we got another walk in with only 3 or 4 lengths of the hall...but not bad considering he had a 102 temp. When he's not walking, every 2 hours he has to use the spirometer....it helps your lungs. I can't remember if I've shown a picture of it on the blog or not. Here's it is:

To exercise your lungs, you exhale away from the machine, then put the mouthpiece in your mouth and inhale slowly, making the center white platform rise to the top. It's a good lung workout. Dad had an advantage...I think left-over days of swimming was the key.

I took Dad's temp during the middle of the night and at 2:30 it was down to 99.9. The nurse came in at 5:30 for the usual blood draw and to administer the antibiotic. At 6:30 Dad's temp was 100.6...still way better than yesterday. He was actually hungry this morning and he ate a really good breakfast...Denver omelet, hash browns, OJ, grapefruit, coffee. So that is really doing good for him, since he hasn't been very hungry for several days.

So we're off to see the doctor this morning and then we'll be walking the halls for awhile. He's still pretty sleepy when he's not sitting up and eating...so it's anybody's guess what his blood counts will be. I'll let you know later ...after our doctor visit.

Day 5 - out of the boring bracket

Dad was running a bit of a fever before going to bed last night and by 6:30 this morning it was at 38.3 C (100.9 F) so I reported that. Also, last night Dad was having some diarrhea so the nurse wanted me to get a sample this morning to send to the lab to test for c diff - a particular strain of bacteria found in the intestines. So a sample was secured (I won't go into details...but that was my least favorite nurse duty) and it is being analyzed.

In the mean time we have a sign on our door that tells all who enter to suit up and put on a gown and gloves. The sign stays up until either the test comes back negative, or until he gets over the infection. It also tells the housekeeper to use a clorox wash on everything in the room. In other words...the sign means..."possible cooties here".

We went to the treatment center this morning for results of the daily blood work and to see the doctor. Dad's blood work was as I expected...he needed a platelet transfusion today. White blood cells were still .1, but the red blood cells and hemoglobin were up (still below normal...but up). This morning he also required a shot of magnesium (administered thru iv). Because of his temp and low white blood cell count, they started him on antibiotics...through a drip. Hence, the no longer boring status.

He's still really tired and dozing off most of the time. When the doctor came in, he said that Dad looked good...he realized he didn't feel so great with everything ...but he said he looked way better than lots of people going through this. He also said that all of Dad's symptoms are very common and pretty much to be expected for going through the stem cell transplant. He told Dad to keep up the good work and keep walking. I thought it was very encouraging to hear the doctor say that he looked good.

Well, the c diff test came back negative and we just got the formal ok so the cootie sign is now off our door. That's good news. Because of Dad's fever, they are also checking for possible causes so they drew blood from both lumens of his catheter, from his port, checked his stool, checked his urine, drew blood from his arm. Dad asked if they'd like any of his ear wax to check (that was about all that was left to check).

He got through the yellow bag of platelets without any reaction (they gave him some benedryl and tylenol before giving him the transfusion). He got through the antibiotics without a reaction...so the nurse will be up to our room to give him the next dose of antibiotics (iv) at 4:00. He got his magnesium. Now, he just needs to wake up so I can order some food for him. He's been sawing logs since we got back to the room.

The nursing staff and doctors are very attentive here. The cooperative care nurse was just in, checking up on things. They are always available when you call...they have a cell phone and answer immediately. That's all for now. I'll try to post later today.

Day 4 afternoon

Dad didn't get back to his room til 3:00. The blood transfusions took quite a while. They took it slow to try to avoid any reactions...so he did just fine with the 2 bags of blood. Sara came to visit and brought Dad some deviled eggs for Easter...in fact, that was the only thing that even resembled Easter today. It was great to see Sara! and Dad, even though not much for conversation today, really appreciated the visit. He's pretty much been sleeping or just lying around all day...just doesn't have the energy for anything else..and I'm sure that's just what his body needs...some rest to repair itself. He missed lunch altogether because he was getting the transfusion, but he ate a decent dinner, even though he wasn't thrilled with it. He had tomato soup, macaroni & cheese, cottage cheese, and pears....not bad.

So this is just one of those days that you just get through and go on to the next day. I will post tomorrow to let you know how Dad is doing then.

Day 4

Dad had a fairly good night and a good breakfast. His nurse came in about 8:00 and said his hemoglobin was low and that he needed some blood today. So we're currently in the treatment center waiting for the usual doctor visit and waiting for the blood transfusion to arrive. He will require 2 bags of blood...standard procedure. It will take about 3-4 hours ...it's a slow drip, I guess. Dad's currently sleeping in the recliner here...he's really tired, but that's understandable due to his white blood cells being just about zeroed out (.1) and his hemoglobin low, and the platelets are still going down. He has a little way to go before needing a platelet transfusion, but my guess is that will be tomorrow. This is all normal for all of this to be going on. The nurses are on top of everything and are very good about checking up on him and asking him all sorts of questions to try to catch things before they become a problem. Dad just needs to rest today and sleep when he feels like it. He's not feeling bad, other than being tired. I'll post a bit later today.

Day +3

Dad is doing fine this morning. Last night he had a bit of nausea, nothing much, but Sarah, our favorite nurse here, was on duty last night so we had a visit and came up with a plan for Dad to take some anti-nausea medication as a preventive for the next day or 2. It worked out well last night and is working good today. Dad met with the doctor and his blood work is fine. His white blood cell count went down by half...so he's at .3. The RBC (red blood cells) & hemoglobin stayed the same. His platelets dropped...but no transfusion necessary today. Dad walked 1/2 mile this morning...so that's really good. He's still somewhat tired, but functioning well. Lunch has been ordered and is on the way. He ate a good breakfast this morning. We both took a short morning nap. That's all to report today. This is one of those boring days...but as the doctors and nurses say here, "Boring is good!). I may try to post later today...if not, tomorow.

Day: transplant + 2

Dad is doing fine today. His blood counts continue to drop, as expected. For the first time, he's feeling like he has less energy, again, to be expected. His white blood cells today dropped to .6 (normal is 4-11)..so his immune system is pretty well gone. His red blood cells are at 2.6 (normal is 4.3-5.9)... common symptoms are fatigue and possible light headedness. The purpose of the red blood cells is to deliver oxygen from the lungs to other parts of the body. His hemoglobin today is 8.6 (normal is 13.3-17.3 ...for men) Low hemoglobin = anemia and the signs are fatigue, dizziness, lack of concentration. Hemoglobin is the functional unit of the red blood cells...it's a protein structure inside red blood cells and it helps bind the oxygen. Dad's platelets today are 40 (normal is 150-400). Low platelets means less or no blood clotting.

Given all this, Dad is doing fine, eating well, and he is wanting to go for a walk...probably a bit shorter than the 1 1/2 - 2 miles that we've been doing...but he does want to get some sort of a walk in today to maintain strength.

One thing the nurses here are fanatical about is possible falling...they do not want that to happen, especially due to the low platelets. They harp on this constantly (and it's a good thing). They have said if Dad is ever out walking or even in the room and feels a bit dizzy...to sit down...it's better than falling down. Then all you do is call a nurse on your cell phone and they will be there. So at this point I'm monitoring Dad when he's up and walking at all times...that even means when he goes to the bathroom in the middle of the night...or day...and also when he's in the shower in the morning...I'm right there. Poor guy can't even take a whiz in private!...but there's a reason for that and it's all in his best interest...and he isn't complaining a bit.

Well, I need to wrap this up. Dad is ready to go for an afternoon walk and then we'll watch a movie in our room.

Day +1

First of all, thank you to all of you for being part of this blog and for following Dad's/Leo's progress. Your support is a great source of strength for him. He especially enjoys your comments...so keep them coming!

He had a good night last night. As always, the nurse came in to draw blood at 5:30 or 6:00 and then we went down to the treatment center at 9:00 to get the results. His blood is doing what is expected....all counts are going down. They look at many different parts of the blood, but the main things are white blood cell counts (these are the fighter cells...the ones that fight bacteria, and infections and diseases), red blood cells (they carry oxygen and they contain hemoglobin...these things are necessary for survival and give you energy and strength), platelets (these help the blood clot, so a person doesn't bleed to death when cut). They also check absolute neutrophil count (ANC)...I need to figure out what that is...that's for a later date of discussion.

So each day Dad goes for his daily doctor visit and sees the transplant doctor, the physician's assistant, the treatment center nurse (if he needs any catheter caps changed, or lines flushed, or dressings changed), the cooperative care nurse, the nutritionist. This morning the nutritionist asked Dad what percentage his appetitie was...10%?? 25% ?? and Dad said 100%. She just sort of stared and then said that was great, that's all she needed to know. When the transplant doctor came in he asked Dad how he was feeling and if he was having any problems. Dad said he felt great, was eating good, taking walks. And the doctor just stared for a minute and then said, "Well then I'm going to go visit some SICK patients", and smiled, got up, and left the room!

The verdict today is that Dad is doing fine and at this point doesn't need any transfusions. He actually did some work this afternoon...participating in a conference call. (Luckily, it wasn't yesterday when he was a bit loopy from the drugs).

Here's some information on what to expect with Dad's blood: the white blood cells will be the first to bottom out. The red blood cells will follow and then the platelets. To give you an idea of where Dad is at with the blood counts....his white blood cell count is 1.6 (normal is 4-11). There's no transfusion of white blood cells...they just have to recover, although in 1 week Dad will start receiving more of those neupogen shots which encourage white blood cell production. Dad's red blood cell count is 2.77 (normal is 4.3 - 5.9). His hemoglobin today is 8.8. If they reach 8, he will require a transfusion. His platelets are at 47. If they reach 10, he will need a platelet transfusion. So they will be keeping a careful watch on all of the above, but for now, he's feeling good. We went for a 3/4 mile walk this morning and will aim for the same this evening, but that will be dictated by Dad and how he is feeling at that moment.

THE BIG DAY - TRANSPLANT DAY !!

The transplant is complete! Dad got along just fine and didn't have any of the possible symptoms like nausea. The only thing he had was the smell that emanated from him....it happens all the time during a stem cell transplant. I don't understand the theory, but right after the stem cells were going in, he started to smell like creamed corn...or something like that. Every nurse that came in during the transplant said, "yep, you're getting a stem cell transplant". The strange odor goes away in a day usually. Thankfully, I have a bad sense of smell so I barely smelled anything.

I took lots of pictures so you all could see the process, so here they are:

Dad was hooked up to IV fluids at 5:30 this morning to hydrate him. It's important to be very hydrated because as the stem cells enter the body, there are also various red blood cells that are broken and it puts the kidneys under stress to process all those cells. So all day today I have to keep track of input and output...carefully measuring both. The nurses in the transplant room kept track of input and output while he was there, then I continued on when we came back up to our room.

Dad is ready for the transplant in this picture and just waiting for all the premeds and the stem cells to arrive.

Here's Dad all hooked up...looking like the apheresis machine (see the post on April 11). Let's see, where do I begin with all these cords and tubes?? On the right is his Hickman catheter with 2 lumens (tubes) dangling down. This was for the stem cell harvesting and one lumen today accepted the stem cell transplant while the other lumen carried a saline solution at the same time to keep him well hydrated. Dad calls these things "tassles" and has threatened to do a tassle dance (mercifully, he hasn't!). The white circles with attachments are for monitoring the heart during the procedure...like a continual EKG. The bump on his upper right chest (on the left side as you look at the picture) is his port, which has been taking a rest as of late. The catheter has been the workhorse while we've been here.

Here he is just before the transplant, with a bag of sodium bicarbonate dripping along with benadryl and a steroid to ward off any reactions to the transplant. The heart monitor (standard procedure for a transplant) box is weighing down his shirt pocket. (Don't forget to click on these pictures to view them in a larger format)

Since last Monday (the week before 2 days ago), Dad's 600-700 million stem cells have been frozen in liquid nitrogen at a -130 degrees. They arrive in little flat metal boxes...about the size of an I-pad. This picture is the warming bath that each bag of stem cells were submerged into to thaw them out. As you can see, it had to be at a certain temperature and they just barely get them defrosted and then hang them and off they go...back into Dad. By the way...have I said that this type of transplant is called an autologous transplant...meaning it comes from yourself (versus a donor).

An exciting moment...the lady on the right is from the lab that has stored the stem cells and she has just arrived. The red and white cooler holds all 600 million stem cells. The lady on the left is Sandy and she facilitated the process. She thawed them out and hung the bag of cells to drip into Dad. She also verified that they were the proper stem cells.

Here are Sandy and the lady from the lab going through each package of stem cells, doing a double check, matching Dad's name and the batch number and his birthdate...just many ways of checking.

Again, here is one of the metal cases holding a bag of the stem cells. They keep them stored on ice until thawing each one out, one at a time.

This is what each bag looks like frozen. It's a salmon color until it thaws, and then it appears a little darker. Sandy put each bag in another plastic bag and submerged it in lukewarm water and then held it until all the frozen parts were thawed. Each bag was approx. 65 ml in size (that's a little over 1/4 C.) and each bag took about 10 minutes to drip back into Dad. As soon as one bag was hanging to drip, they would take out another bag and double verify the information against Dad's hospital bracelet and then start the thawing process and by then, the other bag had finished draining into Dad and the process was repeated. Dad had 9 bags total. that equaled about 2 1/2 C. of stem cell bags.

Here is a bag after it was thawed. It has turned a darker red and is ready to hang on the IV post.

By this time, the benadryl has been working on Dad and he's a little loopy.

Here are the fluids going into Dad and he is sound asleep. Little does he know that a party is making it's way to his room. A bunch of nurses and coordinators are heading his way. Hopefully he will refrain from drooling! Joanne had come in earlier to decorate with signs.

Here's one of the signs to celebrate the return of the stem cells!

And here's another.

But this one was the favorite of all the nurses and coordinators. It was done by our very talented daughter. Sara, everyone LOVED this sign and it is now going to be added to the cast of signs that goes to every stem cell transplant patient! Way to go! And Dad really loved it!! (Be sure to click on this one so you can read all the words!)

So the party arrived with cymbals and rattles, making a lot of celebratory noise and singing a song about the transplant to the tune of Celebrate. It was a bit corny...but very nice of them to do. As you can see, Dad was fully doped up by this time and tried hard to stay awake with the cymbals and all going on!

Here's a close up of a bag of those miniature miracles known as stem cells, in particular, Dad's.

This picture shows all the machinery that was in action for the transplant. It's all pretty incredible that this process is even possible, considering the main event stem cells aren't even visible except under a very strong microscope.

Here is Sandy and the nurse, once again (as they did with every bag), identifying the tags on the bag to the information on Dad's hospital bracelet.

Sandy and the lab lady, checking out the second batch of stem cell bags.

Yes, Dad's stem cells arrived in an Igloo Playmate cooler...and it was red and white.

Happy to be welcoming back his little stem cells! The P.A. came in during the transplant and has been following Dad's progress. When she found out he was doing great today...blood pressure was very good and very stable, she said, "Boy, Leo, you are just a rock star!".

Dad's request for today was that as he was getting back his life force stem cells, he wanted to watch the digital frame with about 900 photos of family members. Pictures ranging from 1974 when we were married, to very recent pictures. He loves all of these photos of family that tugs on his heart.

Here he just looked up from watching the digital frame for awhile. Notice the smile.

Here's the stack of metal containers that the bags of stem cells came frozen in. I think this was taken just before the final 9th bag was thawed.

The party people also brought Dad a birthday cake (for starting a new life) along with a Live Strong bracelet. Of course they take backstage to the digital frame!

As a final note, I mentioned the importance of Dad being hydrated during this whole event. So after he was disconnected from at least some of the tubes, he said he had to go to the bathroom. The bathroom was attached to his room...it's behind the door with the sign "Go Big T for transplant". So he had to put his "output" in one of those measuring urinal things. He came out and told the nurse and when she went back in there to measure it, she yelled out "holy cow!". He had filled it with 850 ml ...or about 3 2/3 C. of urine! She had never seen that much. So several other nurses and a coordinator had to see it to believe it. I guess there's nothing wrong with his bladder! Anyway, I thought the sign on the door should have read "Go Big P (ee) !

Following the transplant, Dad was doing so good, they let him come back upstairs after about an hour, I think. The transplant started at 9:50 AM and took til about 11:20. So we came back upstairs and Dad was hungry for lunch so we ate and he has been taking it easy, but is now talking about taking a little walk. We can't go quite as briskly as we have, because he's still hooked up to the saline bag, but it's almost done. Dad has to give a urine sample here soon to make sure there's no blood in the sample. If it's clear, he can be unhooked from the iv pole. If there is some blood, it's not big deal, he just will have to get another bag to flush things out.

All in all it's been one fantastic day.

More of Stem Cell Transplant 101

Again, regressing to last Monday when Dad was harvesting stem cells. As you know, the first day his collection was .8 (the target goal was between 1.5 - 5) so it wasn't bad, but it wasn't great. They gave him a shot called plerixafor (also known as mozobil) on Monday evening to boost the stem cell count the next day. And boost the cells it did! As stated before, he harvested almost 2.2 stem cells the second day...for a total of almost 3 (that's 600-700 million stem cells).

What I want to talk about is the shot (the plerixafor). We had heard that it was really expensive, but we thought, well, it's worth it - it could have saved 1, 2, or 3 days of 4 hours each day of harvesting & that can't be cheap either. My curiosity got to me so I called the billing department to see what the shot cost. We weren't prepared for the answer. Sit down everybody - this one shot - plerixafor - 24 mg (1.2 ml)....the quantity is 1/4 teaspoon....costs........ $25,ooo.

After getting over the initial shock, Dad had his own take on it. So it's storybook time, ala Dad. Sit back, put on your PJ's, get comfy, and enjoy this special 2 page book:

TITLE: Perspectives



Page 1

Plerixafor (Mozobil) injection

Cost: $25,000

Justification: Speeds up the harvesting of millions of human stem cells for transplants & saves lives.






page 2

A turbine disc from a jet engine

Cost: $75,000

Justification: To put some guy's ass in an airplane so he can fly to Cayman Islands to count his money.


THE END

T minus 1....that means the transplant is tomorrow!!!!!

Dad just got back from his last chemo and he's one happy camper! The chemo he got today was a small bag and had to be mixed up just before administering...it has a short shelf life. It's one that can cause mouth sores and problems with the digestive lining so about a half hour before the chemo started dripping into him, he started sucking on ice chips to chill his mouth and esophagus so that it deters circulation to those areas and hopefully keeps the chemo from going to those places. So he started eating the ice at 8:30 this morning and continued on til a bit after 10:30. He sounds like he's just been to the dentist since his whole mouth is frozen!

He saw the doctor again this morning and all is looking good. The patient coordinator came in to talk to us about what to expect tomorrow for the transplant. Her name is Sandy and she will be helping with the procedure. I'll take pictures tomorrow and will post sometime tomorrow afternoon. They start about 5:30 AM tomorrow giving Dad some hydrating solutions IV and then some pre-meds and then the stem cells. We should be done by early afternoon. Sandy said that Dad will be receiving 8 bags of his stem cells. I'll give more info tomorrow.

T minus 2

All is going well for Dad today. This morning when the doctor was making the rounds, he came into Dad's room and told Dad that he should get an award for his walking. Today is the last day of long chemo days (2 doses). Tomorrow is a short chemo at 9:00 AM. Apparently, it's short, but not necessarily sweet. It's the one that can cause problems with mouth sores and the digestive lining, and that's why it's suggested that you chew on ice chips or popsicles while the chemo is running and a bit longer (thanks, Julie, for that suggestion!). The theory as I understand it is that if you freeze the area of the mouth with ice, it reduces the circulation there...so hopefully the chemo doesn't get that close to the mouth and the throat (while swallowing the ice) and on down.

Dad started wearing a face mask yesterday...for when he leaves the room. It's just a precaution. His white blood cells are way down, but his red blood cells, platelets, and hemoglobin are holding their own for now (still under normal). He wears this mask when we go for walks and when he goes to the treatment center. So the quesion is...WHO IS THAT MASKED MAN?

Why, it's kemosabe.

And Dad's twist on this?? Ok, you all can guess this...right? WWDS (What would Dad say). Come on...you know this.... (scroll down)

It's chemo - sabe!!!!

T minus 3

Dad is doing just fine today. He got through this morning's chemo and this evening's without a hitch. He ate good today at all meals...he's had no trouble with food. We walked (again, at a very brisk pace) for 1 mile this morning just following chemo, and again a little bit ago...another mile. When the doctor heard about that, he seemed fairly impressed. So we're taking it easy right now and will be heading to bed fairly soon. The good part is that when you do this cooperative care plan, you don't have anyone waking you up during the night to take vital signs and such. Now if someone needed to have a nurse check up on them, they would be there. Since Dad is doing fine, he'll just have the usual blood draw at about 5:45 AM tomorrow morning.

Tomorrow is the last day of his 2 times a day chemo. Then on Tuesday it's a short chemo just in the morning. Wednesday is the big day...transplant day.

Since I don't have anything else to report, I thought I'd show you what our home away from home looks like :

Scenes from our room:

This is in our room...it's Nurse Ratchet's work station.

This is one of the long hallways in the Med Center. It's where Dad and I go for our mile walks. It's a very long hall!

Another part of the mile walk.

Another hallway that we also walk in.

The view down below, as we're walking.