Day + 55 Merry Christmas!!

Good morning all! Peter and I would like to wish you all a Merry Christmas and a Happy Holiday season. We are both doing well and are ready for a great day spent with friends and family.

All Peter's counts remain good. We continue with the magnesium at home. The doctor's are beginning to taper back his prednisone and his BP meds and so far so good.

We were able to go to church last night - it was wonderful! The service was perfect - lessons and carols and Paster Nagle's sermon was great, as always. We saw many of our church family and felt so much love and prayers it was amazing. Peter wore his mask and gloves most of the time so we felt like we took all necessary precautions.

Will spend most of the day with Linda, Jim and Heather and then return back to our little abode.

Have great day!

Wendy

Day + 53 Happy Holidays Everyone

Good morning all! Things continue to go well. It is relatively quiet at the clinic right now, but they are expecting a full house, about 20 patients. They are trying their hardest to give all who can Christmas Eve and Christmas Day off. Only those who are actively receiving chemo will still have to come in.

We have the next 2 days off. We got permission to go to church Monday night so we will be there at 8 in Nagle Hall. It will be nice to be able to attend church. Tuesday we will have Christmas dinner with Linda, Jim and Heather.

Last Thursday we started home infusion of magnesium mixed with saline. It is a really neat process. The mag comes in a bottle a little wider than a baby bottle. There is a balloon inside filled with mag and saline. After priming the bottle it is attached to one of Peter's ports and he keeps it with him for the next 4-5 hours until the balloon is completely deflated. He will do this on Tuesday, Thursday and Saturday, so hopefully our clinic visits will be shorter.

No movie Friday - it wasn't playing at our theater and we did not go to Southpoint because of the crowds. Guess we will have to wait now until after the holidays.

Today we finish shopping and wrapping presents. Tomorrow we will go to Harris Teeter - boy do we live a boring life - Harris Teeter is sometimes the high point of our day!

In case I don't blog again until after Christmas, I hope you all have a great Christmas.

Thanks again for all your love and support.

Wendy

Day + 49 Almost halfway there!

All continues to go well. When we first started talking about this whole procedure we were told that Peter would be an out patient for 100 or so days, we are almost halfway there. Yeah!!

Clinic visits are Monday, Wednesday, Friday and Sunday and usually all that is needed is magnesium. Tomorrow Duke Home Health comes to teach us how to use a home infusion pump so that Peter can get magnesium on the days we do not go to the clinic. This may mean shorter visits at the clinic as less magnesium should be needed. The plan for next week is to give us Christmas Eve and Christmas Day off and then see how things are going on Wed.

We talked with Dr. Horwitz today about the clinical trial. From what he says, if there is no donor available between now and the end of the year, they may miss the window of opportunity for the thymus gland transplant. He said ideally they would like to do it within 10 days of day +60. Guess we will just have to wait and see.

Susan, the nurse practicioner, says we have partial approval for Christmas. We can go to Raleigh for Christmas dinner, but not for Christmas Eve services although she suggested we ask again, which we will. Our plan is to go to the 8PM service in Nagle Hall and then come right back to Durham.

We continue to get to know the other's at the clinic better everyday. I have been working on a brightly colored quilt top and everyone comes by to check on my progress. Today I opened up the quilt to show a few others and the group discussed whether I should finish as planned or make some changes. After consultation, I am going to be finished earlier than I thought. I had been thinking of making the changes suggested today, but needed some validation about my decision. Several of the other wives quilt and knit so we compare notes and share ideas. We also discuss where the best places are to walk, shop etc. without large crowds. At this time of year, that is not easy to do!

Peter got a large package from his co-workers at GE today. It really made his day. He opened the package and put all the gifts under our Christmas palm tree. It is so nice to know that he has that many friends at work who are pulling for him. Believe me, we will be back in Wilmington as soon as we can!

Movie plan for this week: Friday matinee "National Treasure". Hopefully if school is out, there won't be many school kids at this movie. We probably won't go again until school starts up again in January.

We continue to receive support from all our friends in the Raleigh area also. We have seen Cindi & Fred, Roy and Arlene and Cindy and Randy. It helps to make not being at home a bit more tolerable. Of course, we talk to Heather almost every day and see her once or twice a week. Kim and Todd will be up next week and hopefully can stay for a few days.

Guess that's all for now.

Wendy

Day + 45 It's Saturday, right?

It is amazing how quickly I lose track of days of the week. For awhile it was because every day was the same: get up, go to the hospital, go back to the hotel, go to bed and then start all over again. Once Peter was discharged from the hospital it was the same for about a week, and then we started getting days off which made every day Monday and for the second week now we have had appointments on Sunday which is totally screwing me up. I am not complaining about the reason for the days off - Peter is doing better - I just wish I could keep track of time better. Maybe I should write the day of the week on my hand!

As I mentioned before, Peter keeps getting better - check out his blog - I am sure he has recorded all his counts. If we could just keep his magnesium levels up, that would be great. Since beans are high in magnesium, I figured that if we made 12 bean soup that would help. So, we bought the bean soup mix, soaked the beans as directed, cooked them in the crock pot as directed and guess what, they weren't ready. We ended up cooking them on the stove for at least another hour and they are still a bit crunchy. Sure hope the mag. went up!

Saw "The Golden Compass" Thursday. There were actually 8 of us in the theater. The movie was interesting. There is supposed to be alot of symbolism in the movie; as usual, I missed most of the symbolism. I think the reason many people think it is anti-Christian is because in the movie everyone has an animal companion that is their soul. That is ok, except they are referred to as their "demons". That could be the problem.

Tomorrow we need to be at the clinic at 9AM. Hopefully only need magnesium at the most. They have been reducing Peter's meds and if this trend continues he may be off his blood pressure and diabetes meds - both of which were in response to the transplant and all the other stuff associated with the transplant.

Our friend who needs to start over will begin next Sat. She will be having her transplant as an out patient. If all goes well, she will be here another 2-3 months. She is a great role model for us, keeping a positive attitude and doing her best to keep everyone else's spirits up also. Please keep her in your prayers - her name is Toni.

Thanks,

Wendy

Day +43 Still looking good

Yesterday at the clinic went as usual - only needed magnesium. Got good news from the nurse practicioner - bone marrow biopsy showed no leukemia cells and no myeldysplasitic cells. So everything is working as it should be. Yeah! We have today off so plan on walking to the movie theater to see "Golden Compass". Will give movie review tomorrow.

Debbie & Craig came out last night and we went out for mexican food - excellent! Debbie just did the Kiawah marathon last weekend and says all went well. Craig has a new job which sounds really great. We caught them up on the status of the clinical study Peter is participating in - yesterday they drew several extra tubes of blood for the study and we have been told they are looking for a baby who needs open heart surgery who would match Peter for transplant purposes. They would like to do the transplant the week after Christmas. Now we have to wait and see if there are any donors out there.

We were reminded again yesterday at the clinic just how fortunate and blessed we are. One of the ladies we have gotten to know fairly well was told Tuesday that her transplant failed and she will need to start all over again. She was devasted and we were shocked - we thought it was too late to fail - guess not. She was meeting with the team after we saw her and will update us on Friday. I can't imagine being in her place. I did agree with her, you gotta do what you gotta do, so there is no point in dwelling on it.

Have a great day.

Wendy

Day + 41 April 24, 2008 - Save that date

Greetings all! I am in Wilmington today but do know that all went well yesterday for Peter. He needed magnesium and potassium as usual, and all counts are good. I overheard on Sunday that the reason they want the electrolyte levels at the high end of normal is that the heart and the liver are very easily damaged if levels get too low, therefore they aim for the high end.

We gave a ride to the clinic yesterday to two ladies from our hotel complex who are in our same situtation, a mother and her daughter who has had a stem cell transplant. They are also from Wilmington. They invited us to work with them and New Hanover Regional Medical Center on a Bone Marrow Donor Drive in Wilmington on Saturday, April 24, 2008. We invite any of you who can to come - all they do is take a q-tip swab of your mouth. I'll send out more information as I learn it.

I have been contemplating walking another marathon (half this time) to raise funds for the Leukemia Society. This marrow drive has given me the nudge I needed to decide to do it. Kim and I, and maybe Heather (guess I better ask her soon) are planning on doing the Nike Women's Marathon in San Francisco in Oct. '08. I will be asking for your support and donations later.

Not much else is new - all is boringly normal for the point we are at. I'm gonna try and catch up with the mail while I am here. In one month I bet we had at least 100 catalogs - can you tell Christmas is coming?

Have a great day!

Wendy

Day + 39 5th Bone Marrow Biopsy, Rising Counts

All continues to go well for us. I didn't realize it has been so long since I blogged - I'm sorry.

Well, Thursday we did not get up early as planned but we did get to the mall around 11. It was not very crowded so we stayed for about an hour. We would walk 15 minutes and then rest 10. Did that twice and then had lunch. Stopped in the Fossil store on the way out to check out watches for Peter's birthday on Friday.

As usual, all Peter needed Friday was magnesium. Then to celebrate his birthday he had another bone marrow biospy - actually it is usually scheduled around this time and it just happened to be his birthday. He got his happy juice before the procedure so all went fairly well.

Heather came out Friday night and we went to a Thai restaurant near by. We think they lost our order so it took almost an hour to get the food, but it was worth the wait. Really good!!! Has anyone had Thai ice tea with half and half? It has a really interesting taste, not quite sure what was in it besides tea and half and half.

Yesterday we had the day off again. We went over the to gardens at Duke University. Very nice place, bet it is great in the spring! The roses were still in bloom but alot of other plants were dying from lack of water. They have a very large Japanese garden with a big pond. The pond has ducks, some were unusual - solid black with orange beaks and other hangy looking stuff on their faces that was also orange. There were also black and white ducks, plain white ducks and then just regular old ducks. The black ducks seemed to be a bit larger than the rest. It was really interesting to watch then move about in the pond, so smooth with the feet moving as fast as can be.

Evidently the other end of the pond is the place to come and photograph the ducks. There were several people there with cameras with huge lenses taking pictures. One guy had some kids throw bread to the ducks so he could get some action shots.

Went to clinic today - magnesium as usual. Should get the report on the biospy by the end of the week. It is interesting how the group at the clinic is bonding. We all move around talking to each other, discussing our counts and what day we are on. There are alot of husband and wife teams, and a few friend/friend or mother/daughter teams. Everyone is in the same boat and we all try to help each other out.

I will be in Wilmington for 2 days this week. Our friend Jim will be staying here with Peter. I think it will be a nice change for both of us.

There have been several requests for our address at the hotel. If you need it, please email me at wendywhy@charter.net. I will be glad to give it to you.

Hope you are all well,

Wendy

Day + 35 Counts still going up

Another good day at the clinic. Counts continue to improve, platelets were up to 25 today. All of Peter's counts are now higher than they were on July 20 when we discovered there might be a problem during a regular checkup. He generally feels good, but tires easily. Had some indigestion today but nothing to be concerned about.

Peter talked with Dr. Horwitz about the clinical trial and they decided to proceed. Providing all continues to go well, and they can find an appropriate donor, the transplant would probably take place sometime the week after Christmas. This would still keep us on track to return to Wilmington. If all works well, this should give his immune system a big push and really speed up his recovery.

The plan for tomorrow, as told to me by Peter, is to get up, have oatmeal for breakfast and then get dressed and head to the mall early to get some walking in and maybe some shopping. Need to try to beat the crowds. After the mall, we will just play it by ear as to what to do for the rest of the day.

TTFN*

Wendy

*TaTa for now

Day + 34

Good day today - quiet morning, movie in afternoon and dinner with good friends tonight.

You don't really appreciate where you are until you are not there anymore. This 2 room suite at the hotel is nice, but it is sure not home. I guess maybe I am starting to get cabin fever, or something. Never thought I would miss an oven and a dishwasher, washer and dryer too! Since we only have a service for 3 and the kitchen is not really conducive to washing and drying dishes, we have started using plastic utensils and paper plates. I know, it's not good for the environment, but we are doing our part in conserving water.

We went to "Beowulf" today. We were going to walk to the theater but decided it was too cold, so we got there really early. As usual, it cost more for the 2 sodas and the box of milk duds than for the movie itself. As for the movie - did you know it is in 3D? Last movie I saw in 3D was
"The Stewardesses" in 1970. 3D has come a long way since then and the glasses you get for the movie are "real" glasses, not those paper glasses with one red and one green lense. I did find that if you sat on the side of the theater rather than right in the middle, the whole movie appeared a bit clearer. Interesting story, great special effects, not quite sure why Angelina Jolie is publicised so much for the movie, except I guess because she is Angelina Jolie.

Linda and Jim came by tonight and brought barbecue for dinner - North Carolina barbecue that is. For those of you who don't know, barbecue in NC is the meal, not a way of cooking the meal. NC (Eastern variety) is pulled and/or chopped pork with a vinegar based hot pepper sauce that is usually served with hush puppies and slaw. It has a kick to it and for some it is an aquired taste. It beats Western NC barbecue (tomato based sauce) hands down. Dessert for either barbecue is usually banana pudding and pecan pie; drinks could be sweet tea or lemonade.

As expected the company and the meal were great!

Clinic tomorrow at 8:30, wonder what products will be needed? So far no blood products in a week. Those little donor cells are really doing a good job.

G'nite,

Wendy

Day + 33 On again and off again x 2

Still moving in the right direction! On Sat. all Peter needed was magnesium and then we got Sunday off. We were slugs! Watched 2 movies on TV "The Ron Clark Story" with Chandler from Friends and "The Wedding" with Halle Berry. Both were very good. We didn't get dressed until after 3, went to RadioShack, K-Mart and Target and then got Chinese take-out - mmm good.

Clinic this morning was not until 10AM - a bit late for us. After they drew blood we took the shuttle to the Oncology Clinic Radiation Dept. for the weekly chest x-ray. As far as we know all was ok. By the time we got back to the ABMT clinic the blood counts were back and all that was needed was magnesium. Platelets went from 14 to 16 on their own!!!!

Lisa, the nurse practicioner, added another long acting insulin to the regimen and gave us another day off! So, tomorrow we will pretend it is a regular day and get up and get dressed as usual and then after lunch we are going to the movies - maybe to see "Beowulf". Will let you know our opinion tomorrow.

Whooee, the wind has picked up and the temperature has dropped. I'm ready for summer again!

Hope all is well with all of you.

Wendy

Day +30 One month down!

Another short day at the clinic, only needed magnesium and potassium. Lisa, the nurse practicioner said that if all goes well tomorrow we may get to take Sunday off!!! We can sleep in! Hopefully tomorrow he won't require much and his counts will be good.

We're now into the second day of Insulin shots. Peter did all his shots today. I only do the ones in the back of the arms. He is finding it very complicated to try and check his blood sugar, give insulin and take all the meds he has. Some must be taken on empty stomach, others with food, or without certain foods and he still has to take them slowly so they stay put.

We went to get him a new cellphone today and of course the salesperson who waited on us was sniffling and coughing all over the place. Peter had his gloves on and stood away from the guy while choosing the phone. Then he went to the other side of the store to sit while all was being done. When we got home we wiped down the new phone and the old one, and his phone holder. You know, most of us take it for granted that we may catch a cold at some point in time, but it takes on a different meaning when a cold could do you in. We are alot more careful than we used to be and are amazed at how lucky we were that Peter did not catch anything before the transplant. I guess even his ineffective immune system held him in good stead for awhile. Now we need to give his baby size immune system the chance to work.

Still thinking about the clinical trial. Leaning towards doing it. I think the potential benefits outweigh the risks, but the final decision is Peter's.

I'm done for today! Thanks for your support and prayers.

Wendy

Day +29 Still going in the right direction.

All was good today at the clinic. Only required magnesium. We finished there around 1; it would have been sooner except for 2 things. First of all we both had to learn how to draw up insulin into a syringe and how to give the shots. That went well and I gave Peter his first shot in the arm before dinner.

The second thing is quite interesting. Peter has been asked to be in a clinical trial, actually right now he would be the clinical trial - the only participant right now. It seems that sometimes babies are born without thymus glands. Because the thymus gland is the "school" for T cells to learn how to fight infections, babies without thymus glands usually don't survive very long. It is also common that when babies are born with heart defects and require open heart surgery, they thymus gland is partially removed and discarded.

About 15 years ago a research MD wondered if parts of these glands could be transplanted into babies and if these would function as thymus glands for those babies. Of the 44 babies they have done it on, 32 have successfully converted these sections to function as the thymus glands to build up the babies immune as would happen normally.

In adults or most everyone over 15-20 years of age, the thymus glands atrophy and no longer functions. Since adults with cord blood stem cell transplants are basically newborn babies immune-wise, this trial would see if the same procedure would work in these adults. Peter has fully engrafted and since almost all his cells are from one donor, he is considered a perfect candidate.

He needs to decide by Monday and then it would take 10 days to 2-3 weeks before the procedure would be performed. Basically they make a small incision into the muscular portion of his thigh and insert a piece of tissue about the size and consistency of a gauze pad. This could be done with "happy" juice. There should be an increase in the rate of increase in his immune system recuperation and in about 10 weeks a biopsy would be performed to verify that it has worked.

There are many benefits for Peter and few risks. If successful his immune system would grow much faster than it normally would and he may not require all the usual childhood vaccinations. Another advantage would be that he would not be as limited in dealing with small children & infants; with his compromised immune system he could catch anything they do. With a better immune system he would be less at risk.

Peter had a nice visit with Pastor Ray today. I visited for a few minutes and then took advantage of having someone there so that I could go get a haircut. Peter brought him up to date on the medical situation, and we were both reminded that our church family is there for us, all we need do is ask.

Heather came by for a few minutes and is planning on coming out Saturday with her friend Mark. They will be out bike riding and plan to stop by here.

Tomorrow is Friday, right? It's hard to keep track of time lately. Hopefully it will be another short day.

Until then,

Wendy

Day + 28

Never got around to blogging last night so will do it now and then do another tonight. The second day at the clinic went well - only there from 8:45 until 2:00. Blood counts are still good but needed magnesium and potassium. Peter's rash is almost gone, looks much better and doesn't itch. He is peeling like crazy - sorta like a sunburn.

Because he is on prednisone his blood sugar is way up. The Nurse Practicioner called yesterday afternoon and said she had prescribed a diabetic testing kit for him to begin using. He tests before each meal and will be starting to give himself insulin. Not sure if they want to do just one injection/day or if he will be doing one before each meal. Hopefully this will all be resolved once he is weaned off the insulin. Otherwise there is another new regimen to add to his daily meds.

We haven't gotten out to walk at all lately. Both of us are tired and sleepy most of the time. We would probably feel better after walking - maybe today.

Every Thursday morning is a caregiver's support group at the clinic. I went this morning and it sure was nice to be reminded that unfortunately there are others in the same boat as we are, some even worse. Reminds me yet again how fortunate we are! Some folks have been going through all of this mess for 2-3 years.

Peter and I are both adjusting to living with someone again. Even though we were only apart for about 6 weeks it is amazing how many habits you can build up that you would not normally do - not always shutting the bathroom door, using the bed for a closet and dresser, you know just little things. Right now we are both tolerant of each other, but do let the other know that that is not what is usually done.

It should be a short day today - only needs magnesium, and to be taught how to inject himself. One of our pastors from Cary is coming by this afternoon to visit. It's nice to be remembered.

More later,

Wendy

Day +27 First day at the clinic

What a day this has been, long and relatively boring. We had to be at the clinic by 9 so we figured if we were up between 7:30 & 8:00 that would be good. Well we got there by 9 but just barely. Peter got up hungry and as he was eating he wondered when he was supposed to take the pills he needed on an empty stomach - decided it would have to be mid morning. He was a bit disoriented/confused this morning which is probably to be expected after 30+ days in the hospital. He thought he slept through the night but I reminded him he got up once to open the door to the living room and I got up once to turn off a light he had turned on for who knows why. It is the first night he slept that well, but he realized at the clinic exactly how tired he was.

We were at the clinic until 4PM. He needed some electrolytes and platelets. We will go there everyday to see what treatments he may need and then stay there until all is done. Probably long days at first but as his new cells work better the time at the clinic should be shorter.

While there, there was a fire alarm/?drill. There were 2 patients and 2 family in the clinic at the time. All but 2 of the nurses evacuated the building. They said we would evacuate if it really was necessary. We looked out the window to find that everyone but us was out. Finally one of the physician's assistants came in (with his coat on) and said he thought all was well - so why did he have his coat on? Later they announced that all was clear and then that PA came back wearing his white coat. It was a really strange experience.

Arlene and Roy came by tonight and brought goodies to eat. We got caught up on all our activites and had a nice visit with them.

Well, our 10 votes last night for dancing with the stars did the trick - Helio won!

Clinic 8:45 tomorrow. Hope we can make it on time!

Wendy

Day + 26 Gone

Well, Peter is gone from 9200 the ABMT unit at Duke and is in residence here with me in Durham. He got out about 1PM and we have been sittin' around doin' nuthin' most of the afternoon. He has got all his meds organized - 11 prescriptions that cost way too much money! He's got the heat cranked up high and I am dying! I've got shorts and a tee shirt on and I am still too hot! Guess I'll be sleeping in the other room with the door shut and the AC on.

We start going to the outpatient clinic tomorrow. Don't know what to expect yet - guess it all depends on if he needs blood etc. or not. I am sure there are lots of rules etc. we don't know yet. Should make it interesting.

I tried to vote by phone for dancing with the stars and had no luck - always a busy signal. Then I voted online for Peter and I and tried to set up an email address for Annie (our dog) but didn't have the right password to do that. So I only got to vote 10 times instead of 20.

Till tomorrow,

Wendy

Day +25 Going, going . . .

WBC 8.8! All looks good for discharge tomorrow. I was partly right, Peter had alot packed and knew pretty much where everything else would go. Almost all of his meds are by mouth now and he only has one bag hanging. Maybe he won't have to come home with a pump.

I'll get training tomorrow on changing his bandage on the port. They will review with both of us his meds and any possible interactions - timing on some of them is crucial. Don't know how many pills there will be yet plus mouthwashes, creams and who knows what else.

We talked with his nurse today and she said since he got stem cells from cord blood he is basically a baby as far as his immune system is concerned - so we treat him like a baby as far as being near illnesses is concerned. Eventually he will have to get all his vaccinations again.

He can come with me to get groceries or to a movie or when he is eating more, we can go out to eat - just need to be sure we go at the least crowded times. We specifically asked about going to church on 12/9 and she said no way. Oh well, there is always next year.

I gave the front desk a list of what needed to be done for cleaning tomorrow and I will doublecheck with the manager in the morning to be sure there is no problem. The place just needs a good cleaning and the kitchen and bathrooms need to be cleaned with antibacterial stuff. Wanted the filters changed too. Don't want to take any chances.

Until tomorrow,

Wendy

Day + 24 I'm off tonight.

I'm off tonight. Please check Peter's blog at www.peter-vampire.blogspot.com

More tomorrow.

Wendy

Day + 23 Counting Down to Monday

Well, it's official - the doctor's are shooting to discharge Peter from the hospital on Monday. He is very pleased about it and it is just what he needed to encourage him to eat more food. It looks like he will have eaten 3 small meals today and is trying to do better.

As part of the road to discharge Peter had a liver and spleen ultrasound to be sure there is no blockages or other problems. Should know the results soon. He was excited to be out of the ABMT unit and told the transport person they could leave him out by the elevators all day and he would be happy.

Sally & Garth from the CTK choir came to visit today. We got to know them during the choir trip to Italy that we were lucky enough to be able to go on. We don't sing - we are groupies and we do that job very well. Can't wait for the next trip.

Also saw Courtney, one of Kim's friends from elementary school. It sure is nice to see old and new friends. It is always a blessing to be reminded that we have some many friends.

If I know Peter, he will have all the pics off the walls tonight and probably be partially packed so there won't be so much to do Monday. He's gonna be like a kid waiting for Santa to come, so send all your positive thoughts his way so that he does get released on Monday.

Take care,

Wendy

Day + 22 It's a Boy!

I hope you all had a great Thanksgiving today! All things considered, we had a very good Thanksgiving. Peter felt good all day. He walked 7 laps at one time, almost .5 miles and felt a good tired when he was done. All the soreness he had yesterday was gone. They continue to change his meds from IV to pill form. We brought a large pill box with us and I think it will be filled with his daily meds.

I got to his room about 8:15 so I was there for rounds. His white blood count is 3.1 - the low end of normal is 3.2, so he is doing well. The swelling in his left hand and arm has decreased, actually it looks almost normal. His rash looks much better and hardly itches at all. The main concern right now is his eating, or lack of it. He says nothing looks appealing and he cannot think of anything he would like me to bring in. A friend of ours who is a cancer survivor says she lived on peanut butter and crackers for quite awhile so he is trying that - Thanks D.W.!

About 10 today Sue, Peter's nurse for the day came in with some good news that we had been waiting for. They took blood last week and sent it off to be checked. The results came back today: in his blood there are no cells left from Peter, all the cells are donor cells. Of those cells 98% are male and only 2% are female. So the little boy came through as the dominant donor. This means that he has engrafted the donor cells and the best part is that there are no cells of his left.

Oh, by the way, Percy Sledge sang "When a Man loves a Woman".

The kids and I met for brunch today at 11 and walked away stuffed. They came to visit at the hospital and then they needed to head out early. Kim and Todd had another Thanksgiving meal in Columbia and Heather was going to an "Orphans" Thanksgiving and then head to the beach to spend some time with the "gang".

Things should be pretty quiet this weekend, I may be Peter's only guest. He is feeling well so visitors are definitely welcome.

If things keep going well he should be discharged from in-patient status early next week.

Thanks for your prayers and your support. It makes this whole ordeal livable knowing we have such a good support group available to us if we need.

Wendy

Day + 21 Going in the right direction

Good day all!

It seems that the day did not begin or end on a good note but all the time in between was good. The ANC (I think those were the 3 letters) is over 500 and has been for 3 days. That is one of the criteria for discharge to out-patient status. The total body rash that Peter has is beginning to itch so he gets cortisone cream for that and today they started him on a 3 day program of prednisone to help clear it up.

Eating remains a problem. They discontinued the IV nutrition and hope that his appetite will come back. One of the side effects of prednisone is an increased appetite so that should help. He still has problems keeping stuff down. We think maybe part of the problem is that he is eating/drinking sometimes from a semi-reclined position. I think he is going to try to only take oral stuff while sitting up.

Peter is consistently getting in 1 mile/day broken up into 4 walks. He goes faster but not farther.

The nursing staff at the clinic had a full turkey dinner for all family members today. It was great! Kim, Todd, Sylvia and I walked there and back (10 minutes each way). I was hoping it was enough of a walk to burn up all the calories I ate, but I doubt it.

Yet again we were reminded today of how fortunate we are. There is another couple on the unit. He came in a week after Peter and is having a really rough time. They gave him morphine for pain and he was immediately addicted to it and really wacked out. His wife and the nurses had a difficult time tryin to keep him from climbing out of bed, pulling his clothes off and he almost pulled is central line out. To top it all off, he had to quit his job when he got sick and then she had to quit hers because she is his only care giver. Now they have used up all their financial resources and are working with the hospital staff to find a place for them to go when he is discharged. She has spent every night in the hospital sleeping in the recliner in his room. The hospital was finally able to call in a sitter to stay with him so his wife can have some time off, but she has no place to go. Hopefully the hospital will be able to find a place for them to go soon. This sure makes Peter's problems seem insignificant compared with theirs, but to him (us) they are significant. We still have this great network of friends, blog readers and family and we know they are all pulling for us!!! We really do appreciate it.

Everyone visiting leaves tomorrow, Sylvia in the morning and the kids in the afternoon. Then it will be just Peter and I and maybe we can just unwind and relax. If anyone is so inclined, visitors would be good over the weekend.

Happy Thanksgiving!!!

Wendy

Day + 20 Still moving up!

WBC is now 1.4, moving up slowly but surely. Discharge is in the near future. The nurse was explaining today that there are some numbers that they have to add together and do other math stuff with to reach a desired number. Once Peter reaches that number Peter can theoretically go home. She feels he is close to that number so they are starting to take away some IV meds and either eliminating the drug altogether or changing to pill or liquid form. He is still on the IV nutrition and is only eating small meals. That I think will be the biggest problem. When he doesn't think he can eat, he doesn't even try at all. Haven't asked yet if he could still be on IV nutrition and be discharged. I sure hope not. According to what I have read, he could get into trouble with his blood sugar. Guess we will find out in the next few days.

Sylvia stayed with Peter today so I could go to my stitching group. It was nice to be away and not feel guilty about leaving Peter alone at the hospital. Kim and Todd came about 5:30 tonight and we all stayed with Peter for an hour or so. He started to feel overwhelmed with all of us there so we left. The four of us went to a bar/restaurant in Durham and had a good time. At 8 the bar had a trivia game. We stayed for the beginning of it but since it was going to be a 3 hour game we did not stay. The first category was music. Todd knew the answers to all but one question and that was one from the 60's that I should have known--who was the original singer of "When a Man loves a Woman"??? do you know??

Tomorrow we will try and space visitors out better than today. At noon we will go to the ABMT (Adult Bone Marrow Transplant) clinic for a Thanksgiving meal provided for us by the clinic. If Peter is hungry we will bring him back a plate of food. Heather will be out in the afternoon and evening so Sylvia and I want to walk over to the Duke Chapel. It is a beautiful building - they don't make them like that anymore.

I apologize if I ramble or repeat myself. Sometimes I don't remember what I have said from day to day. All in all, things are still moving up!

Wendy

Day +19 WBC 1.2

Things are moving right along at a good pace! The doctors at rounds this morning suggested that it was getting to be time for all to be thinking in terms of discharge from the hospital and starting out-patient treatment at the clinic. Peter seemed a bit surprised - not sure why - but will be agreeable to discharge when the team decides. He told me later that sometimes he thinks he will be at the hospital for an indefinite length of time - it seems like he will never get out.

Compared to last week, he is doing great!! When he is awake he is able to concentrate for longer periods of time. He was able to eat parts of 3 meals today so maybe they can start to decrease the IV nutrition. He can walk for a .25 mile stretch at a time and recovers quickly from the exercise.

Peter's sister Sylvia arrived tonight from Florida, actually she was on her way back to VT but decided to stop and check up on Peter. We had a short visit at the hospital tonight and then Sylvia will spend most of the day with Peter tomorrow. They can catch up on family stuff.

Kim and Todd arrive sometime tomorrow. They will come by the hospital and visit for awhile. They are going to stay with Heather, Etta and Annie. Lily, their dog will be there also. We have not had all 3 dogs together before so it will be interesting to see how they all get along.

I really like the suite at the hotel. I just hope we don't find that it is much too small for the two of us. At least it is 2 seperate rooms, each with their own bathroom. Then, if needed at times, we can be completely apart. It will be interesting to find out just how much activity Peter can have away from the clinic or our hotel. I hope that if he wears a mask he can go out in public for short periods of time. That will help us both keep our sanity.

Keep sending those positive thoughts.

Wendy

Days +17 and +18 Good Weekend

Oops, I forgot to blog last night. It was 1:30 by the time I went to bed and I did not even realize I had not done it until tonight. I will catch you up on both days.

After my "girl's sleepover" at the hotel Friday night, the weekend was fairly quiet. Peter is still not able to eat much food so the IV nutrition continues. He is not interested in most of what is available, and when there is something he wants he usually only eats 2-3 bites or if it is something he can munch on most of the day he will do that. The nurses say this is not unusual and that his appetite will come back. I don't think he will be discharged with the IV nutrition because I think they have to monitor him more closely with it.

Heather came to visit Sat. afternoon. Since Peter had an anti-nausea shot, he slept. It gave Heather and I a nice time to knit and to visit with each other. Peter's sisters called from a family wedding in Florida. He was on speakerphone so they all talked with him. His sister Sylvia comes tomorrow for a few days. Then she can report to all the family how he is doing.

Today was really quiet. I was the only visitor although Peter got several phone calls. He has been having some swelling in his feet, abdomen, face, and left arm. After a 15 minute walk this morning Peter noticed that his left hand was twice its normal size. The nurses looked at it and suggested we use ice on it. After two sessions with ice beginning above his elbow and extending to his knuckles his arm was almost back to normal. He is to watch it tonight and ice it again as needed.

Peter is still bothered with severe heartburn. He says it feels like a large pill is stuck in his esophagus. It takes quite awhile for the pain to go away.

Knowing that he is grafting the stem cells has made life in his room abit more tolerable. Now he knows that discharge from the hospital is in sight. We will both miss the "Good 'n Plenty" gang at Thanksgiving but know that this is all only temporary. We plan to be there next year.

That's all for now.

Wendy

Day + 16 Great news!

Please read Peter's blog today - he has great news and I would like you to read it from him first.

www.peter-vampire.blogspot.com

Wendy

Day + 15 Good news

Today Peter's white blood count hit 500 - something must be working!!! He said the drs. were very pleased. Of course, I was at the hospital at 8AM so that I could catch the drs. at rounds, but it was raining so they were all late. I left for Wilmington at 9:30AM and there was no sign of any of the doctors for rounds.

I just talked to Peter and he said his day was good. He was sleepy so he will tell me more tomorrow. I have to unpack some of the stuff I brought back from Wilmington and then I am going to bed, hopefully to sleep.

G'nite

Wendy

Day + 14 Hanging In There

Peter continues with his up and down path. Today was not so good, nausea most of the day, medicated for the nausea which resulted in sleeping almost all day. Peter is not having much success eating. He either has no interest in the food, or eats and then it come right back up. The staff assures us this is quite normal. They will probably start IV nutrition tomorrow. As explained today, he can still order meals and try and eat if he can, but if eating doesn't work at least we know he is getting adequate nutrition.

According to his weight this morning (around 4AM) he is up 11 pounds. His face is puffy, his feet and left arm from elbow to hand are swollen as is his abdomen and other parts further south. He got Lasix today but it didn't seem to make much difference. I am going to try and get to the hospital for rounds tomorrow so I can hear first hand what the team says.

I know he gets frustrated with all these things. He remains pleasant as much as possible. He really doesn't complain much except to say he is tired and tired of all this. Hopefully all this stuff will pass soon.

He got some good news today: white blood count is up to .3. The drs. seem to be thinking that his new marrow is starting to engraft and maybe even work. Still haven't decided if it is the girl or boy that is doing it. I'm rooting for the girl.

I'll be going home for the day tomorrow. I don't think we were really thinking when we came up here - we sure left alot home that we will need. I have a 2 column list of stuff to bring back with me including winter clothes, heavy coats and gloves. Since I have no oven here I will also bring a toaster oven and my crock pot. When Peter is ready to eat, I will be ready to cook.

That's it for today,

Wendy

Day + 13 Moving onward

Good day today. Peter was up and awake most of the day. His voice is returning slowly. He went most of the day without a fever but had a slight one when I left at 9PM. Tests were ordered to see if maybe he has a bladder infection.



He was up almost 4 pounds on the scales this morning and the general concensus is water retention. He feet were larger as was his left arm and hand. His abdomen was distended. This is a result of the treatment and drugs he has been taking since being admitted to the hospital. Did you know that men can retain fluid in 2 small round body parts? I guess they can become quite large and painful - and we thought only women retained fluid. The night nurse was going to try and wait until the morning before giving him lasix. She thought that he might like to sleep instead of run to the bathroom most of the night. If he gets too uncomfortable, she will give it earlier.



Peter received two "care" packages today, one from his sister Caroline and family and the other from my cousin Lori and family. Since I was the only visitor today the packages came at just the right time.



The nurses were telling us tonight that Peter is the favorite patient on the floor - all the nurses want to have him as their patient. They say he never complains, likes to goof off and only calls for help when absolutely needed. He has even learned how to adjust his IV monitors when it says he is occluded. It is nice to hear that in spite of all the stuff he is going through, the real Peter shines through!



More tomorrow,



Wendy

Day + 12 Counts abit higher!

I apologize for the missing picture in yesterday's blog. I uploaded one, but I have no idea where it went. It was there when I proofed everything and now it is gone. It should be right above these words, if not, I'll try again tomorrow.

All counts are now rising slowly. One doctor said Peter could be discharged in as little as 10 days! So let's hope the counts keep rising.

All days now seem to be cyclical - Peter feels fine, stays awake for several hours at a time, then falls asleep for hours at a time. Sometimes he can eat a full meal and be ok and other times he loses it as fast as he eats it. If he would remember to stay ahead of the meds for nausea I think he would be ok. The nurse practicioner was in today. If he has one more day with a fever, then they will start him on IV nutrition. She says that they would rather get him on this early than to wait and have to really work hard to get him to where he should be nutrition wise. He seems ok with it, it's just another bag to hang on Herb. (I have a pic of Peter & Herb but it is too large to post).

Peter is up and moving when he needs to. He still is not getting enough walking in during the day. I can't say much to him because I am not walking either. We both need to increase our fluid intake and our walking!

We had a nice visit this afternoon from our friend and pastor Tom Nelson. We talked of trips to Las Vegas and New Jersey. We compared some of the casinos and I encouraged Tom to go to the Mohegan Sun Casino in CT. We also talked about the Madrigal Dinner at church (Christ the King Lutheran Church in Cary) and Tom mentioned that Peter was in the prayers of the church. After a short prayer Tom left and said he will return soon.

Even though the changes in blood counts seem small, they are still going in the right direction. I think we both get discouraged because it seems that change is not fast enough. Living in a hotel or hospital room alone is not much fun. We are both blessed to have good friends to take care of us. Thanks Beth for picking me up and taking me out for lunch! Every little bit helps!

Hopefully tomorrow I will have something to post on Peter's blog. Until then, Thanks!

Wendy

Day +11 Voice almost gone

Well, not only has Peter lost his hair, he has lost his voice. It seems that whatever it is that is causing the indigestion/nausea/sore throat is causing his voice to be almost not there. Or, it could be a reaction to all the meds he is on. Bottom line is, if you try to call him and no one answers, call me. If he can't be heard he won't answer his phone.

The drs. remain very positive. He had a temp (101) this morning so they ordered a chest x-ray and changed the antibiotic he was on. He seemed very congested this morning, but seemed much better by the time I left today.

One new predicament he encountered today was that his hands and fingers were beginning to swell. Since we were unable to find someone to cut his wedding ring off before he was admitted, we asked the nursing staff if they could do it. They brought in this neat little ring cutting device and after about 10 minutes the ring was off. That means we will have to get new wedding rings next Sept. for our 35 anniversary!!

Cindi & Fred came by again today. Peter & Fred played cribbage and then decided to go for a walk around the unit. Fred tried to hand washer at the nurse's station and thought it was pretty neat. Including the walk with Fred, Peter walked .75 miles today. He said he would try and get another walk in so we could say he walked a mile.

I have put a picture in this blog of Peter with no hair. He was medicated, thus the goofy look on his face. He still some moustache, but is finding he doesn't need to shave much any more.

While talking with another patient and her husband tonight I found out that once his numbers reach a certain level you are allowed out of the unit for short periods of time. Of course you must wear a mask or two, gloves and probably a hat and sweater to keep you warm. They can go only as far as the elevators but at least they sights are different and the air is not quite so dry. This patient was on day + 17 so maybe by next weekend we can walk outside of the unit.


Thanks again for your thoughts and prayers! Keep the cards and comments coming.



Wendy

Day + 10 Up and then not so up

Peter had very good news this morning. His white blood count went from .1 to.2. Even though that seems to be an insignificant amount it may mean that the new stem cells are starting to work and form marrow. His drs are pleased but cautious - it seems a bit early for this to be happening. They had blood drawn to verify if the stem cells are working and to see if it is the little boy stem cells or the little girl stem cells that are working. Since we all know that if you need work done you can count on a woman - I am sure it is the little girl's that are working.


It seems that to be safe Peter needs to get the anti-nausea shots on a regular basis. He felt good this morning and ate cereal and fruit. Lunch was bouillion and yogurt, but dinner was not possible. Late afternoon today he was very nauseas and felt poorly. No temp. just unable to keep anything down. After his shot, he went right back to sleep. I know we seem to dwell on his eating, but that is a major problem for stem cell transplantees. If they cannot eat on their own they can get IV nutrition. The problem with the IV nutrition is that it is hard to get back to eating real food. So, IV nutrition is a last resort.

Hair report: eyebrows look good, moustache is thinner but still there. Peter is thrilled that his hair might be brown when it comes back in. Then his hair color will match his driver's license again!

Cindi and Fred stopped by for about an hour today. The four of us had a nice visit. We turned the TV off and missed the end of the Carolina/NC State game. Found out the results later. If Peter is feeling up to it, Fred hopes to beat him in cribbage again on Sunday.

That's all for now,

Wendy

Day + 9

Today was an ok day. Peter slept better last night because of the addition of a sleeping pill. He was fairly good in the morning but dozed off quite abit in the afternoon. He complains alot about having a dry mouth so I will bring him some lifesavers or other hard candy tomorrow. He says the thought and look of food makes him nauseous (why don't I have that problem) so he is not eating. They do have a special protein shake they make and he will drink that.

He got IV lasix (diuretic-makes you pee alot) today for the continued swelling of his feet. His blood counts are slowly rising which is good. Nothing really dramatic. White blood cells went from less than .1 to .1 so that is a good thing.

Peter continues to have some problems with concentration. He can read maybe 3 pages in a book before he has to reread because he doesn't remember what he has read. I asked if he wanted to play cards or cribbage but he doesn't feel ready for that yet.

This whole event has been a real eye opener for me. I get support and encouragement from friends and family and also from perfect strangers. I sat across from an RN at lunch yesterday and we got to talking. When she learned why I was at Duke she asked if she could add Peter to her prayer list. She asked for his name so she could pray specifically for him. After hearing about his activities at Duke, our college age waitress told me she would pray for him. That is just amazing to me.

Tonight I went to another stitch & bitch group - this was a group of Heather's friends, co-workers and stitching pals. We had a very nice time and some delicious dessert and hot chocolate. We did a fair amount of stitching and bitching also.

Until tomorrow night,

Wendy

Day + 8

Hello all,

We are really loving all the responses we get via the blogs! We are so fortunate to have such great friends and co-workers.

Slow day today. As I suspected, Peter needed platelets and blood. He got 2 bags of platelets last night and 2 bags of blood today. He may need more platelets tonight. He was in and out of sleep last night and up until about 2 PM today.

I brought in some chinese food so we were able to have lunch together in the conference room - a nice change of pace. We may do this more often as he is feeling better.

All in all everyone is pleased with his progress. During rounds yesterday morning they noticed the terrible bruises on his arms from the shots he get. The site for shots was changed to his belly. The nurse yesterday must have great technique - no bruising. The one today was not so good - large bruise.

I left early today because my friend Nella was coming for dinner and to sleepover. We had a great (no calorie) dinner at Red Robin and then came back to the hotel room. 7 of my "Tuesday morning stitchers that meets on Thursday night" drove up here for stitchers. It was so nice to see all of them. I am so lucky to have such great stitchin buddies.

Thanks to all we send cards and emails and come to visit. It means alot to both of us. FYI: I am unable to respond to questions sent in the comments section because I do not get the email addresses of those who send comments. I will try to remember to answer questions on the blog itself.

Wendy

Day + 7

All continues to go well with Peter. His oncologist from the transplant team and his nurse were in and they are very pleased with how he is doing!

The morphine pump is no more and Peter says the pain in his feet and legs is tolerable. Still some swelling in the feet, but that too seems to be going down.

His eyebrows and moustache are thinning rapidly. He has not been without a moustache since 1971. Our girls have never seen him without one. He keeps a hat or doo-rag on most of the day because he is cold without hair. He has started putting moisturizer on his head so it is not so dry.

Last night (the 6th) was a very good night for him. 6 of his friends from Rotary came to visit. They talked about the usual guy stuff including the trip they all took to the Dominican Republic for Habitat.

Still can't find my camera. Will have to find one to borrow. Several women have said they would shave their heads to match Peters but have something big coming up so they can't. Come on guys - YOU can do It.

Have a great day! I'll try and send more tonight. My stitching group is coming here tonight so I might not get a chance.

Wendy

Day 6

Not much change today. Peter had the morphine pump removed and now has pills to take if he needs it for the pain in his legs. So far tylenol is working so lets hope it keeps up. He continues to feel pretty good, can stay awake most of the day, and his drs. are very pleased with his progress.

Peter had 2 female visitors today, Arlene and Linda. He enjoys the company - I don't count as company! He did say he was tired and since Linda and I were going out to eat, we left early. One of the volunteers at the hospital recommended a chinese restaurant near our hotel. It was excellent.

Speaking of volunteers, there is a different volunteer each day who comes to visit each patient. They mainly just chat for 10-15 minutes and then move on to the next patient. All of the ones we have met have been cancer survivors so I think there is a special bond there. There is also a lady who comes in dressed like a clown. She has snacks, magazines, books for the patients. The snacks are at no charge.

Linda is staying here with me tonight. It is so nice to have someone to talk to! Night time can be very long when you are by yourself. I have great friends who come and encourage me to get out. Usually if I am not in Peter's hospital room I am back at the hotel all locked in.

Thanks for your thoughts and prayers.

Wendy

Day + 5 Say good-bye to Peter's hair

Peter showered this AM and left most of his hair in the drain. When Monique, the nursing assistant came in she suggested that he shave the rest of it off. She said she had a kit and she would be glad to do it for him. Then Peter called me so that I would not be totally surprised. Actually it looks pretty good except that his head is two tone, tanned and not tanned. His head is nicely shaped but oh boy, do his ears stick out. He has been wearing his doo-rag and the knit cap I made him because he says he is colder with no hair. I think he likes to alternate between a biker and a swami.

He thinks he is starting to lose his moustache (if he would stop pulling on it, it would be ok) and maybe his eyebrows. I read somewhere that with total body radiation you lose all your hair. I knit him a small moustache but he won't wear it.

Once I find my camera (I've only been here 2 weeks and I am already losing stuff) I will take a pic and then try to upload it to his blog. If anyone would like to demonstrate solidarity with Peter and shaves their head, I will post their pic on Peter's blog also. Any takers?

Other than the head shaving, it was a good day. Peter was awake and up for most of the day, and was out walking in the halls also. He headed to the treadmill when I left for the day. He had a nosebleed last night that they had difficulty getting to stop. Since his platelets are very low, he has no clotting mechanism. They had to give him 2 bags of platelets and have him lie flat on his back before the nosebleed stopped.

We look forward to comments of the blogs - keep them coming please!

Wendy

Day + 4 False Alarm

The day started out pretty much as usual. No problems that needed my attention last night. My friend Cindi & I had a "sleepover" at my hotel suite. We decided to go get bagels for breakfast and since it was so nice outside we would walk to Brueggers. Then Cindi mentioned the Flea Market in Raleigh, and did we want to go. Well, that is one of the best flea markets in the state so I checked with Peter. He said he was fine and to go. I asked about his hair and he said he was losing it in big clumps. He had his doo-rag on and we could decide if his head needed shaving or not. About 5 minutes later he calls me back and said the dr.s said he should probably just go ahead and shave it now. One of the nurses/asst. could do it if he asked her. I said either she could do it or I could.



So Cindi and I go to the flea market and had a good time. Lots of good fleas today. Unfortunately we forgot that the Raleigh Marathon was today and the start/finish line was at the stadium that is right near the flea market so it took us abit longer to get there than we expected.



Meanwhile, as I go through the flea market I am envisioning Peter with large clumps of hair left on his head - sort like bunny tails except on his head. I hoped that he had shaved his head before I got there.



Imagine my surprise when I get to his room and he takes off his doo-rag. He still has quite abit of hair all over his head - not in the clumps like I imagined. He is lucky to have very thick hair so today it just looked thinner. We do agree that it is only a matter of time before all is gone.



That was my false alarm - I really expected to see something quite odd looking, not someone who still has more hair that others.



All in all, he had a good day. He is up and out of bed alot more than before but does tire very easily. I have never seen someone who can fall asleep as quickly as he does.



That's all until tomorrow. Check Peter's site - there is a new posting.



Wendy

Day + 3

Peter had another good day today. His mouth and throat are feeling better so he is eating and drinking more. His hair is thinning; I asked him to warn me ahead of time when he loses most of it. I want to be prepared.



Today he started retaining fluid in his ankles and feet. The put him on a diuretic and told him to drink more water. When a diuretic and extra water are combined it means many more trips to the bathroom. So Peter and his pole "Herb" visit the bathroom on a very regular basis. All of this is an expected side effect from all the treatments he has been getting. Moving around more will also help to decrease the swelling.



Heather was in today and she stayed while I went home early. It was a good time for Peter & Heather to visit.



I came back later with Cindi and Debbie. We visited with him for about an hour and then we went to Carrabas for dinner. It sure is nice to have friends and family close by. It helps both of us to have visitors. Even though Peter cannot leave the unit, over the course of 24 hours he sees and talks to more people than I do. Usually if I am not at the hospital, I am back at the hotel room. I'm not one to eat out by myself so I eat the main meal at the hospital (by myself) and then have a small dinner. Since I'm not big on cooking I usually eat fruit and cheese or peanut butter.



We're gonna make it through this little hiccup in our lives and be better for it.



Thanks again for your love and support.



Wendy

Day + 2 - Something is getting thinner

Neither Peter or I or our seperate patiences are getting any thinner but it is starting to look as though that white/gray stuff on the top of the head is getting thinner - either that or he is growing more skin on his head. He started to be able to get several hairs when he ran his hand through his hair; maybe it will just get thinner. He does have 2 doo-rags, one knit cap and several ball caps to help hide the loss.

Today was another good day. He is trying to get the nursing staff to adjust to his routine rather than theirs. He gets irritated when they come in several times instead of doing all that needs to be done at one time, especially when he is trying to sleep. He's already tired from his treatment so not getting as much sleep at any one time as he normally would makes him just a bit grumpy.

The leg pains he has had for a few days have progressed down to his ankles which are starting to swell. He is not drinking enough or walking around enough so that is something we will have to work on every day. When the pain gets really bad he moves around alot and can't seem to get comfortable. Eventually he takes his pain med and that causes him to fall asleep.

His blood counts are still low but no worse than before. Not sure when exactly we might expect to notice some changes for the better. The doctors are very good about explaining stuff to us and they are all very pleased with his progress.

Keep the cards, calls and visits coming. It really brightens up both of our days.

Have a great weekend!

Wendy

PS Check www.peter-vampire.blogspot.com for a new posting.

PSS I walked .5 miles today and mapped out a 2 mile walk.

Day + 1

Sorry I didn't write last night, couldn't get on the internet because my password was invalid. About midnight I realized that since it was the beginning of the month I might need a new password, and guess what, I was right. So now I am good for another month.

Yesterday was day + 1. From now on the days are counted like that and hopefully when we get to day + 90 we will be getting ready to come home.

Peter had a great day yesterday. Kim and I visited him for a short time in the morning and then he told us to go ahead and go shopping because he wanted a nap. Well, you don't have to tell us twice to go shopping so we did. We had a great time, and Heather joined us there. Unfortunately we didn't see the Cheesecake Factory until we were all done shopping - we will be sure to do that next time. Peter needed new shampoo yesterday so I bought the smallest bottle I could find - I figured as soon as he got new shampoo his hair would fall out - so far it is still there.

We got back around 4:30 and Peter said he had a great nap. He got up and walked around the unit and then walked on the treadmill for .3 miles. His mouth sores are going away so he has been eating alot better. The drs. are all pleased with his progress so far. It sure would be nice if this is the worst it gets!

Until tonight,

Wendy

Stem Cell Transplant Complete

After several hours of waiting, Peter got his new stem cells today around 3:30. As Kim said, it was kinda anti-climactic - they just hung 2 more bags of stuff. As it turned out, Peter needed the blood from 2 different umbilical cords. One cord was from Duke, the other from a hospital in Texas; also one was from a boy and one from a girl. So depending on which one is more dominant, Peter may be getting more in touch with his feminine side (just kidding).

There happened to be 6 of us in the room when the nurse came in with the first bag. She was very good about explaining what was going on and what meds he got before and during the process. They checked his blood pressure and blood oxygen levels every 15 minutes and adjusted his meds as needed. The whole thing only took 30 minutes. Now we continue the waiting game, waiting for some signs that these new stem cells have engrafted themselves to his bones and are beginning to make marrow and new blood cells.

Hopefully he will only be at Duke another 4 weeks or so and will be ready to come here to the hotel to stay. Then we begin daily out patient treatment.

It means alot to both of us to get email and comments and cards from everyone. Peter loves to get cards in the mail. We may need to bring in another bulletin board to post the cards.

Thanks to you all for your thoughts and prayers. It is nice to know that there are others out there who are keeping us in their prayers.

Wendy

PS I walked for 25 minutes today - at least that is a start.

Counting down to transplant/infusion

Today was Peter's only day so far with no chemo or radiation. He seemed to be in better spirits but I'm sure the morphine drip he had going helped with that. He has had alot of leg pain and mouth pain and the morphine helps alleviate that. The morphine makes him sleep better also.

Not sure what the exact protocol for the transplant/infusion is tomorrow. At least we will now be starting the upward swing. I'm sure it will have it's ups and downs but overall it should be heading towards better health.

Peter and the girls have been trying to bribe me into exercising and I might actually start tomorrow. I'll start walking for 30 minutes and work up from there. Peter says he expects me to be in better shape than now when he is released from Duke. I'll give it a try.

Have a great day!

Wendy

Chemo is finished!

Peter had the last chemo treatment today. Hopefully between the radiation & chemo there are no bone marrow cells or leukemia cells left alive. Tomorrow is his day off and then Wed. is the actual transfusion of stem cells. Thursday becomes day one and then we are off to the races!

Today was a good day! Peter was awake more than asleep, and even had pleasant conversations. He got to be a movie star today. Duke was filming a promo for the ABMT unit and Peter was out walking in the hallway. The filmed him doing that and also going into the kitchenette and helping himself to some food and drink.

Peter still has all his hair, so all is well.

Wendy

Side Effects Are Here

Yesterday and today are the first time that Peter has had very uncomfortable side effects. Even while his counts were very low, he could still work from home and only had minimal discomfort. He is now experiencing nausea, mouth sores, and pain in his legs. The doctors and nurses have assured us both that these are normal considering the amount of total body irradiation and the fact that he has gone through 3 days of very strong chemotherapy. He will probably feel much worse before he gets better. On the bright side, he still has all his hair, for now.

He really enjoys getting cards in the mail. The address is posted on this blog. If you live in the area and would like to visit, late morning and early afternoon are probably the best times to visit. Please call before visiting.

Wendy

Radiation day 4

Hi!

Be sure to check Peter's blog today www.peter-vampire.blogspot.com.

Only one more radiation treatment(Friday morning) and then chemo starts (Friday afternoon). Peter felt pretty good tonight although he did have 2 episodes of nausea today. He stayed awake for a good part of the day, and when he did sleep it was a deep, noisy sleep (oh, does he snore!). He walked up and down the unit this morning before Kim and I arrived and then did 15 minutes or .25 miles before we left tonight.

He has received cards from friends and really enjoys reading them. If we stick to the projected schedule he will get his transplant infusion on Halloween. At the bone marrow clinic they refer to this as his new birthday. It would be great if he got alot of birthday cards on that day - just a little hint here.

Peter had no adverse reactions to the chemo before and we are hoping it is the same this time. He still has his hair, one of the only patients on the unit who does. I think his thick head of white hair has a limited time left.

He would love to have visitors, just call first to see how his day is going. You can call my phone or Peter's phone, or the hospital.

Wendy

Radiation

Radiation began Monday. After the morning session on Tuesday Peter felt a bit nauseaus (I know that is not spelled correctly) so he got some medication to help. Second sessionof radiation for Tuesday went well.

The area where the tubes were from the portacath is painful especially when he moves the right arm. Once he got some pain med it felt much better. His nurse and I are trying to get him to ask for meds before it gets to bad rather than wait until the pain or upset stomach are to bad. He thinks he can tough it out, but I think this is one area he needs to give in.

He spends much of his day napping. He says the radiation is making him more tired than he has ever been. At times he nods off when someone is speaking to him. He just can't stay awake. His attitude remains upbeat, and he is rolling with the punches.

If you would like to send him mail the address at Duke is:

DUMC
Erwin Road
Durham, NC 27710

Attn: Room 9202
Peter Yandow

In his room we hung the Leukemia and Lymphoma Society posters signed by his co-workers at GE. I know it gives him strength to know that everyone there is pulling for him.

I try to get to the hospital around 10 and stay until 7 or 8. I check with the nurses and Peter to find out how the evening went. He spiked a fever Monday night so they began to follow the fever protocol --several different labs, portable chest x-ray, and he started on antibiotics. So far nothing has shown up from the labs and the fever lasted for only 1-2 hours.

Kim is coming to visit for a few days. She and Heather will probably come to the hospital to visit with Peter. I'm sure Peter will enjoy seeing someone besides me.

Thanks for all your thoughts and prayers.

Wendy

Dodged another bullet, but finally the treatment has begun!

Sorry it has taken so long for an update. I tried to get the laptop working using the wireless here at the hotel and of course it wouldn't work. Got it going tonight - totally by accident -- I did write down how I did it so hopefully I can reproduce it again tomorrow.

When we got to Duke last Thursday Peter had a chest xray and an ekg. When we met with the transplant team, they said there was a cloudy area on the chest xray that might be pneumonia, so to eliminate that Peter had a CAT scan that night.

Friday they said all was good - no pneumonia. Since he was supposed to have his old port removed and new port installed that day, he needed another bag of platelets so that his count would be above 50. Well, as far as we know, he has not been above 29 since July. Needless to say, it did not get that high so they decided to postpone the surgery until today.

Yesterday he moved into the Adult Bone Marrow Transplant (ABMT). He is in reverse isolation. That means that visitors must go through 3 sets of double doors, then wash hands for 15 seconds, and then go through another set of double doors. All doors to patient rooms are kept closed. Gone are the days of gowns and gloves. That is not necessary unless the patient is in contact isolation.

All the nurses are great - they are trying to make this ordeal as easy as possible. Peter says the food is good, but remember, I am not a great cook, and don't cook very often anyway.

So far we have met the social worker, nurse clinician, physician's asst., attending physician, physical therapist and the volunteer who is on the floor on Mondays.

I got to Duke about 10 this morning and Peter had had his first radiation treatment. He says you pretty much get into fetal position and hold that for 20 minutes while being irradiated. He will get this 2x/day for 3 more days.

He was not a happy camper today. He was scheduled to have his surgery at some point today, but no one was sure when. That meant he could not have anything to eat until after the surgery. He was just a bit grumpy without food. They finally took him at 4:30 and he became a nice person again after he ate at 6:15.

Thanks for your continued prayers and offers of assistance. We really appreciate it.

Wendy

We're almost there!

It's 9:30pm on Wed. the 17th. Tomorrow is the beginning of the next phase of Peter's treatment. We'll move into the hotel/suite, go to Duke for testing and clinic appointments, and then Peter checks into Duke on Sunday. Radiation followed by chemo will begin next week and then the stem cell transplant and the road back to wellness begins!

We've talked about how we feel about what is going on, and we both agree that there is no other option and we will just have to make the best of the situation. It will be challenging but Peter and I are both so lucky to have the support of our families and our great friends!!!!

More will come later.

Wendy

PS - I had a great 3 days at the beach with my stitching buddies. It was good for both of us to be apart for a few days and I think we are both in better spirits because of it.

Hurry up and wait!

Well, after we got the good news about stem cell donors (cord blood donors), and had all the dates set in our mind, we met with the radiologist and her lovely resident. (Ask Peter about his encounter with these two). And it seems that one of the radiation machines is broken so they cannot nuke as many people as before, so everything got pushed back a week.

That works out great for me because I can go to half of my stitcher's beach week. We have been going for 20+ years and if things were not changed, I would have gladly (sorta) missed the week. Peter wants me to go; I'll only be about 2 hours away, and he still feels fine. If he starts feeling funny, I will be home as fast as I can get the car loaded and drive back to Wilmington.

I've started to pack - two separate piles, one for the beach and one for Duke. It is not easy trying to decide what you might need for 3 months away. I plan on coming back to the house once a month to pick up/exchange clothes etc. I am also starting to pack Annie's (our cocker spaniel) bag. Thank goodness Heather has volunteered to keep her while we are away. When I dropped her off last week for the day and night, she was right at home and did not seem to be upset that I was leaving her.

Needless to say, the house looks like a bomb blew up in it. Hopefully it will look organized by the time I leave for the beach on Sunday. When I get home Wed. I will unload and drop off whatever I don't need. Then Thursday we will reload the car and head for Duke/Durham.

Peter gets his portacath out Friday the 19th and a Hickman catheter put in at the same time. From what we understand, this is a tube into one of the larger veins of the body. They can draw blood from it, and administer drugs and nutrients from it. After that we are free until Sunday at 11 when he gets admitted to Duke unit 9200.

I guess my writing is considered to be stream of consciousness, I'll try and do better.

If you want to receive notification of blog updates, the easiest way to sign up is go to http://www.rssfwd.com/ and then enter in the URL of the blog ( http://peter-vampire.blogspot.com/) or (http://wendy-thevampireswife.blogspot.com/). you then put in your email address and you are all set!

Hope everyone is having a great day!

Wendy

PS: If you know someone who is pregnant, ask them to consider donating the cord blood to the cord blood bank. Who knows who they may help!!

Getting ready to get ready

As many of you know by now, we got word last week that there are 4 cord blood matches for Peter's transplant, so now we are in the getting ready to get ready stage. This will require at least 2 more trips to Duke. Peter will get a very thorough regimen of tests to determine if he is healthy enough for this procedure. Unfortunately he must have one more bone marrow biopsy and this is very painful. I have requested Happy Juice for him and hopefully all will go well.



Once the testing is done, we will return home and begin trying to decide what we need for the 3-4 months we will be away. I hope to return to Wilmington at least once a month to check mail etc., and bring back anything that we might have forgotten.



Because we live in Wilmington, NC, and it is still hurricane season, we must bring in everything from outside the house just in case we get a hurricane. Our neighbors will be watching the house for us and will notify us of any problems.



Once Peter is admitted to the Transplant Unit, one or both of us will have access everyday to write in our blogs. If you have'nt been to his it is http://peter-vampire.blogspot.com/. If you want to contact us by phone, I will have his cellphone but I am more comfortable using my cellphone, so please call me at 919-210-6432.



As far as visiting him at Duke, he can have only 2 visitors at a time. No flowers or plants are allowed on the unit. Once I know his mailing address at Duke, I will post it. Cards will be greatly appreciated.

Thanks for all your thoughts and prayers - they mean alot to both of us.

Wendy