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