Good Evening! Well they have switched me to an oral antibiotic and antiviral so I no longer have to get those through IV at the clinic. My electrolytes have been somewhat stable for the past few days so they are giving me two days off from the clinic (I do not have to go back until Sunday). The only thing they gave me today were platelets (although I didn't technically need them) to hold me over until Sunday.

Michael went to VA today to get a load of our furniture/stuff out of storage. It will be nice to switch out some the furniture in our apartment for our own stuff and to hang our pictures, etc. We're really trying to make this townhouse feel more like home.

We're still waiting to hear whether I got into the clinical trial that starts the second week of January. We're praying that I get in the trial and the treatment is able to affect the Leukemia.

Happy New Year,

Amy

Well we had a clinic visit today just like every other day. I got my usual IV antibiotics and anti-fungal medications as well as a bag of platelets. While we were there we talked to Dr. Rizzieri about what the next step in my treatment should be. He's very doubtful that any regular chemotherapy will put me in remission so different things need to be tried. For this reason, he is trying to get me in a clinical trial where a drug is used that targets something common in the Leukemia cells. This isn't "normal" chemotherapy but another way to attack the cancerous cells in my bone marrow. Of course it is much more complicated than this but this is my simple understanding. If I am accepted into this trial I would have one *outpatient* treatment per week for six weeks. These treatments would start the second week of January.

As mom said the other day, we had a great Christmas. I was worn out very easily but it was still very enjoyable. Hope all of your Christmas celebrations were as good as ours,

Amy

Merry Christmas !!

We hope everyone had a wonderful day yesterday. We had a great Christmas day and with Bucky, Phyllis W., Roberta, David, Matthew, Bonnie, James, and Robbie coming down to visit today - it has been another great day. Of course, so soon after the last chemo treatment Amy's energy level is still low and we have taken Christmas slower, opened gifts at different times and rested in between. Amy still had clinic visits everyday but we were fortunate to get out of the clinic yesterday and today by 1 p.m..

Yes, for all those asking.... Michael did find and cook a goose. Greg, Phyllis V., Amy and Michael all liked the goose. No, I did not try the goose.... the stuffing, baby carrots, zucchini and rolls were enough dinner for me. The entire Christmas dinner was excellent and we will always remember the Christmas Michael cooked a goose. (I think lamb is on the menu for next year)

We are very thankful for all of our family and friends. We thank you for all the prayers being said for Amy. Michael and Amy will meet with Dr. Rizzier Monday. Please continue to pray for Amy and her doctors. The number of Christmas cards, emails, phone calls, visits, and prayers amaze us and are more comfort and support to us than we can put into words.

Happy New Year and Love to all,
Kathy

We got some unfortunate news today. When they tell you results will take over a week and instead get back the next day it's usually not good. My bone marrow is still made up of mostly Leukemia cells so basically this round of chemo did not accomplish it's goal. I'm still going to the clinic for about 5 hours each day for several antibiotics and an anti-fungal and whatever electrolytes or blood products I may need. We will talk with Dr. Rizzieri on Monday about what's next.

We are excited about Christmas though, mom is obviously already here and dad and grandma and coming today. Michael is coming up with some sort of Christmas Dinner to cook. I hope I will be able to eat a little bit of it. Due to mouth sores I'm hooked on "chemotherapy cocktails" where ensure and all those other protein type shakes are mixed up with all kinds of stuff. Mom is becoming quite the "bartender." Roberta, David, Bucky and Phyllis will probably come down Sat. - Sun. We're very disappointed we can't do our usual Christmas "Routine" to see everyone. However, all this company will really make it is a nice christmas.

Send out a special prayer for us. Happy Christmas Eve Eve! Amy

Happy four days before Christmas!

Well, I was released from the hospital yesterday and I actually feel pretty good except for those mouth sores. They really interfere with things I would like to eat around this time of year. They aren't nearly as bad as they were during the transplant but just 6-7 spots that are causing pain. I still have not had any nausea and my counts are dropping as we expected of them. The telltale sign will be the results of the bone marrow biopsy (which I just had). These results can take up to a week and will take more than a week due to Christmas.

For now I'm coming to the clinic everyday (even Friday) to receive an antibiotic through IV plus have blood work and get any other blood products I may need.

We really don't know what the next steps are after this, but we know God will lead the way.

Have a Blessed Holiday Week!

Good evening,

We talked to Greg , in VA, and he said the snowfall measured approximately 22 inches at the house. WOW!! Genie and Phyllis both sent us pictures of the snow which looks beautiful. Here in Durham, we received a dusting of snow, freezing rain, and just plain rain...very disappointing. Last time I spoke to Greg tonight, he still did not have electricity and was heating soup on the gas grill.

Amy is doing well. Her mouth sores are improving. She just finished her "isolation room olympics"..... walking the U shape around her bed for 30 minutes. The doctors are in the process of switching her medications to oral/pill form. We are hoping they will discharge her Sunday or Monday. She will still have to go to the outpatient clinic everyday for blood work, IV medication and any infusions she may need.

Please continue to pray that Monday's bone marrow biopsy will come back with a good report.

For all those who did get snow... enjoy and Merry Christmas.

Love, Kathy

Let it snow!

Although they are calling for 2 inches of snow, we have yet to see any snow in Durham today. We hear a winter storm is suppose to bring a significant amount of snow back home in VA. Be careful out there.

What has been happening:

- Amy's chicken pox have all crusted over and seem to be healing well.

- The original PICC line they inserted was beginning to get very red at the insertion site, so they pulled that line and inserted another PICC line in the other arm.

- Amy's liver levels were slightly off yesterday afternoon, so they did a sonogram of her liver, results were all normal. Her counts were better today.

- The pain of the chicken pox has subsided, but pain of mouth sores has increased. The morphine pump is still in use.

- Amy's has started drinking different " protein shakes" we come up/experiment with, since the mouth sores keep her from eating regular food.

-Fevers are still coming and going throughout the day and night, but they are staying closer to 101 instead of 103 like earlier.

- All of Amy's blood counts are going down as they should and another bone marrow biopsy will be done on Monday (Dec. 21).

-The past few days have been very busy - seems like doctors or nurses are always coming and going, CAT scans, chest x-rays, sonograms then throw in visits from dietitians, social workers, cleaning crew, showers, nurses aids taking vitals... there is not much time to relax and rest.

-We are still in hopes of getting out Monday , after they do the bone marrow biopsy.

We would also like to wish everyone a Merry Christmas and Let it snow!!

Big hugs and love to all,

Kathy

Hi everyone,

I am now on a morphine pump so it's not my fault if certain things in this blog do not make sense. We have not received the biopsy results yet but the general consensus of the doctors is that I have disseminating Zoster virus, which is a fancy term for chicken pox. The deal is that you cannot catch shingles from chicken pox but you can catch chicken pox from shingles. So I gave myself chicken pox. I had chicken pox when I was in elementary school but having a bone marrow transplant causes one to lose any built up immunities. They are pretty painful in some places so they put me on a morphine pump this morning- they're not painful anymore. I'm still having fevers which we do not know the cause. Mouth sores are popping up and I do not have much of an appetite but I have not had any nausea yet (fingers crossed).

Michael has a cold so he cannot come see me but hopefully that will clear up soon. We have no idea when I will get out. They have to get the fevers to stop before we can consider that happening. We are just hoping that it is before Christmas.

Hope everyone is having a wonderful holiday season,

Amy

Hello,

The past few days have been eventful. Amy's fevers continue to cycle - chills, shaking, fever rises, fever breaks, good for awhile, chills, shaking..etc.. The Demerol helps the shaking and Tylenol helps the fevers some. Yesterday Amy had 2 doctors from Infectious Control stop by to look at her bumps/rash. They took a biopsy of one bump and feel it may be Chicken Pox or an extension of the Shingles virus (they should have results of biopsy back in the next few days to be sure). They have changed some of Amy's medications and have her on some very powerful antibiotics, anti-viral and anti-fungal medicines. Also yesterday, they did a CT Scan of Amy's lungs and found a few "nodules" at the top - which may be related to shingles/chicken pox virus. Amy was able to receive her last chemo treatment yesterday and still has no nausea. We have no idea at this time when Amy may be released.

Today, when the doctors made rounds, they decided to move Amy to a new room. We are now in 9201- which is the "isolation room". This basically means Amy cannot leave the room and we have to dress in yellow gowns, gloves, and masks and go through two doors to get into the room. Not being able to leave the room makes it difficult for Amy to get her walking in, but we understand they do not want her virus to spread to others on the hall. Actually, I am very happy with the move. The room is larger, it has a couch (so sleeping will be much more comfortable), and its at the end of the hall where it is very quiet.

Thank you to all who have sent emails and cards. We continue to be amazed with the support and love shown to us. Love to all.

Happy Holidays.. Kathy

Good evening - today was a semi-good day.

Amy still has no nausea but about 5:00 p.m. she started getting chills and then she spiked a fever (102+). The chills and shaking were fairly bad so the nurse gave her some Demerol and it really seemed to help the shaking. Earlier this morning the doctors put her on 2 antibiotics for an ear infection and unknown bumps/rash. Therefore, Dr, Chao said to continue with antibiotics and Tylenol - and wait and see. Hopefully the antibiotics will take care of any infections she may have. As I am writing this, her temperature is back down to 99-100, and she is feeling pretty good.

It is amazing how much "stuff" you can accumulate. Michael had rented one truck for moving , but they ended up having to go rent another truck to finish packing. Greg got on the road , heading back to Clifton Forge, this evening. Michael , and rest of helpers, will start back in the morning.

We are unsure how spiking a fever tonight will affect tomorrows treatment and the possibility of going home. Of course, Amy would love to be able to go home, but if she needs to stay in hospital she understands. Also, Amy is excited to get to see some new faces this weekend.... Chris and Kelly are coming down for a visit and Michael will be back Sunday:).

lots of thanks to all and please keep praying.

Kathy

Hello! So I've had two pretty good days. No nausea yet but my shingles are causing some pain. I'm also getting some sort of rash in several places on my body. We're not sure if that is a good thing or bad thing because at this point if the donor's cells attack my cells it would help fight the leukemia. In other words, graft versus host disease might not be a bad thing anymore. We're still hoping that I get out of the hospital Saturday after my chemo treatment.

From what I hear I think moving is going okay. Michael is worried that everything won't fit in the U-haul but we have the master packer on the job (my dad). We'll see how that goes tomorrow. We are so thankful for all the help with this big job.

As always I hope you all are having a good week and am so thankful for each of you!

Amy

Good Evening. I started chemo today and it is a bright purple drug. So far I have had red, clear, blue and now purple chemo drugs. Nothing much to tell you all on that front. I usually do not have side effects until around day 3 so probably Friday. I will have two more chemo treatments: one on Thursday and one on Saturday. That plan is still to release me Saturday evening or Sunday morning as long as I am keeping down food (which may be a long shot for me but I am going to try very hard).

Michael left for Indiana this morning and has a busy few days ahead of him. I told him that I had been dreading moving out of our house in IN for about a year while we were still living there because we have way too much stuff so this works out well that I don't have to worry about it :). It is a big job for him though but we're thankful we have lots of family and friends to help. He should be back to Durham sometime Sunday.

Hope you all (or ya'll now that I live in the south) have a good week,

Amy

So I am settled in at the hospital. Everyone is very festive here. I brought some snowflakes to put on my hallway windows but that is mild. One room's door is decorated as Rockefeller center complete with the GE building, the tree, and the statue that is by the skating rink. It reminds me that I haven't been to New York in quite a while... maybe next year.

I had my PICC line "installed" today. My arm is a little sore but this is going to be nice. I'm glad I get to avoid all the pain I usually have when they insert a Hickman. The random selection of the clinical trial put me in the experimental part of the trial. Therefore, I will get two chemotherapy drugs delivered within lipids. I think the doctors are excited about this because they get to be a part of something a little new. The chemo will start at about 10:00 tomorrow. My shingles are clearing up but the pain is a little worse but should be gone soon.

Well I'm going to go let my arm rest, love and thanks to all, Amy

Good Evening! We have more information on my upcoming chemotherapy. I will be admitted to the 9200 wing of the hospital on Monday (12/7). That day they will only put in a PICC line (no hickman this time!) and finalize what treatment regimen I will have. Since this is part of a clinical trial I may get the chemotherapy delivered within a lipid or just regular chemotherapy. This is random. The chemo will be given between Tuesday and Saturday and they plan to release me Saturday afternoon or Sunday morning assuming everything goes well. This is weird to me since most of my hospital stays have been around 30 days each. After I'm released I will go to the clinic everyday to check in and have blood work.

In other big news, we have decided to sell our house in Indiana and move to North Carolina permanently. Michael and a few friends will go to IN on Tuesday and pack up our house. Dad, Roberta, David and others will go up Thursday to help. They will bring our stuff to VA on Saturday and put most in storage. It will be nice to get some of our stuff down to Durham to make our apartment feel more like home. It will also be nice to have all of my clothes! I hope the move and selling process go smoothly. Michael is also transferring to UNC. They are waiving a lot of the requirements that normal transfer Ph.D. students would have to complete because of the situation. Therefore he's pretty much picking up at UNC where he left off at Purdue and not losing much time. He's glad to be an official Tarheel. He went to the UNC vs. Michigan State basketball game the other night and came home so excited that he couldn't sleep.

Cool fact: For those of you watching college basketball this week you may have noticed that it is "Jimmy V week" on ESPN. Jim Valvano had lymphoma and was actually treated on the 9100 unit of Duke hospital which is the unit I was on during my hospital stays from March-May. I take his words to heart, "Don't give up... don't ever give up."

Thanks so much for the recent cards and well wishes from my "re-diagnosis", it all means so much,

Amy

Hello! I do not have any medical updates but I thought I would post a few things. First I've heard some are having trouble posting comments. Here are some instructions that will hopefully help:

New Commenters: (you only have to create an account once)
1. Click on the "comments" page below my post
2. Go to the bottom of the page and type in your comment
3. Choose "Google Account" from the "Comment As" Menu
4. Click Post a Comment (if you get an error try clicking this again)
5. Click "create an account now"
6. Enter your info (you will not get junk mail), click continue
7. Do the "word verification" (I hate these things)
8. Click post comment and you're done

Returning Commenters: (if you already have a google account)
Do steps 1-4 above
5. sign in with the email address and password you used to create the account
6. Do the word verification
7. Click post comment

The second thing to post - my email is: amy.crizer@gmail.com Warning: I'm not good at answering emails normally and really not good at it when I'm not feeling well.

The final thing I wanted to do is to explain who David Richardson is since so many people have wondered about him. (Sorry David - you tend to attract attention.) He is my mom's second cousin and he has a sense of humor on steroids which I really appreciate in my current state of health. His only negative quality is that he is a huge Virginia Tech fan - but most of us (besides Blair) accept him anyway.

Hope everyone is well, we'll probably have more info on my next chemo tomorrow,
Much love,
Amy

Good Afternoon! So we have a little bit more of a plan than we did last week but a lot of things are still up in the air. The medical plan is for me to have a big round of chemo. This is actually part of a clinical trial. The chemotherapy drugs are common but they will be put into fats (lipids) before they are injected into me through IV. This is supposed to help them be delivered more directly to the bone marrow. Then we will wait and see how my cells grow back - the hope is the donor cells will be the ones that take over and grow back however there is a chance that my cells will be the ones that grow back. In that case we'll have to go on to some other types of treatment.

I will probably start this round of chemo sometime next week. This will be inpatient chemo and I will be in the 9200 wing of Duke Hospital. I really like this unit and the nurses on it so this does not bother me at all. We will find out more on Thursday about the exact day I will go in the hospital, whether I will have another central line or not, and an estimate of the length of my hospital stay.

Here is an article Cecille McDowell sent me about a woman who had a stem cell transplant. Her situation seems freakishly like mine to this point (down to watching TV shows on DVD while in the hospital). It is a good read if you are interested.

Click here: Cancer Patient Meets Her Bone Marrow Donor

Hope all had a nice Thanksgiving and have a wonderful week,

Amy

Well we received some bad news today: the leukemia is back. However, it is very very early and the immature cells have not even started to come out into my blood yet, they just found leukemia cells in the bone marrow. The next step is that they are going to contact my original donor and ask if he can make another donation of cells. If so, they will give me a round of chemo and then transplant more of his cells. This will act sort of as a booster to the stem cell transplant. Due to the early stage of the leukemia, Dr. Rizzieri is not in a big rush to get started. Michael and I will decide whether to go ahead with the treatment in the next week or so or wait until after Christmas while watching the leukemia closely. In smaller news I also have shingles.

We were disappointed by the news but at the same time, just like in February, we know what's wrong and all we can do is try to fix it. In GOOD news, we got the LAST turkey at Whole Foods today so I think it was meant that that turkey happened to be left for us.

Please keep us in your thoughts and prayers, much thanks, Amy

So the last two days have not been the best. Yesterday, my blood work showed that all of my counts had dropped (platelets, red blood cells, and white blood cells). I had to go back today for a bone marrow biopsy to try to figure out what is going on and to get some red blood cells. After waiting on the type and screen process it took them about two hours to get the blood to the clinic so today was a long day. The results of the bone marrow will probably be delayed because of Thanksgiving but we are just going to enjoy the week and not think about it.

I also have been having some pain in a strip starting at the middle of my ribs, going around my side and to the middle of my back. I automatically thought of shingles because of the shape of the area that is painful. Tonight a few little red spots have popped up in that area so in my non-M.D. opinion I probably have shingles. I had them when I was 16 but I lost my immunity to them with the transplant. Shingles are very common in post transplant patients. I will go to the clinic in the morning to let them check it out. This may sound crazy but it was a relief to me to see the little bit of rash because shingles is something we can deal with and I was starting to worry that the pain was caused by something more serious.

I also have more blood work Friday morning so unfortunately we will not make it to VA for Thanksgiving. Mom and Dad are coming here for Thanksgiving but I still miss getting to see everyone else.

Much thanks for your love, prayers and good wishes!

Amy

Good evening, I had a doctors appointment today. My blood work is still the same: platelets are still low. They really did not expect anything to change in two days. My blood pressure was low both Monday and Wednesday so I get to stop taking my blood pressure medicine (the immune suppressant tends to raise blood pressure). My potassium level was also very good so I only have to take 1 potassium pill a day instead of 2. Finally, the BIG NEWS is that they also cut my immune suppressant in half as well. I now only take 2 immune suppressant pills a day instead of 4. This is a sensitive process and the hope is that my body won't start attacking the donor cells. However, I am very hopeful that I will not have any problems. In total they cut out 4 pills today and had already cut 3 last week. So the number of pills I'm having to take daily is decreasing which is always good from my point of view. At some points after the transplant I took about 30 pills a day! In other good news my pesky magnesium was all the way up to 1.7 (normal is 1.8). I go back for more blood work on Monday.

I can't believe Thanksgiving is a week away and this holiday means more to me than it ever has before. I started making a list of people I was thankful for the other day (remember I'm bored) and I had 2 1/2 pages of names just off the top of my head. So just let me say I am thankful for you all and hope each of you has a Happy Thanksgiving.

Amy

I thought I would post a quick update about my blood work this morning. My platelets dropped a little more but didn't drop as much as the last few times. Again, they think this is caused by medication and said that the medication I stopped taking would take a few weeks to get out of my system. So no worries at this point. I actually see Dr. Rizzieri on Wednesday so there may be more news then.

Michael is off to the Duke basketball game tonight (thanks to Tammy for getting the tickets). Hope you all have a wonderful week.

Amy

Hello Everyone! I had more blood work yesterday and my platelets dropped a little more. They really think this is medication related so they took me off of my anti-viral and my antibiotic. Michael remembers one time before that they lowered my dose of the anti-viral because my platelets dropped. I didn't remember this but it makes me feel better that the anti-viral medication could definitely be the cause (which would mean my platelets dropping is no big deal).

We are back in Durham until Thanksgiving for Michael to work. I will have more blood work next Monday as well.

Much thanks!

Amy

Happy Friday! I can't believe it is already November - I remember telling Dr. Densmore in February that as long as I was feeling better by the world series I would be happy. Well the world series has just finished and I've been feeling good for a long time. Michael is better and came back to VA yesterday. In unfortunate news, Michael's grandmother passed away yesterday so we will stay for the weekend for her funeral.

My blood work Wednesday was pretty good. My platelets did take a drop but they say it's normal for them to fluctuate and not to worry about it. However they want to watch them a little more closely so I will go back for more blood work on Monday.

Hope you all have a splendid weekend, Amy

Hi everyone. Things are still going great as far as my health is concerned. I still get tired very easily and have a little trouble sleeping. I go back Wednesday (11/4) for blood work. Michael is still in Indiana. He has had some sort of flu for the last week and that has delayed his trip back. We don't know if it is H1N1 or not but it sounds similar. Hopefully that is starting to clear up so he can get a few days of work in at Purdue and come back. Hope all is well, Amy

Good Morning! We drove back to Durham Tuesday and had an appointment with Dr. Rizzieri yesterday. My magnesium is holding at 1.3 so again they are fine with that and gave me another two weeks off so we drove back to VA yesterday. It's been very enjoyable and relaxing to be here for a while. The change of scenery is nice and the leaves are beautiful here in the mountains.

Hope you all are enjoying Fall,

Amy

So I've been away from the clinic/doctor for over a week now and I'm still doing very well. Mom and I are at home in VA for the time being since Michael is in California for a conference then he will go back to Indiana for about a week for another conference and to get some things done at Purdue. (Don't feel too sorry for him, the conference center in CA is on the coast about 10 minutes from Pebble Beach.) Grandma is sick (congested) and dad is in Myrtle Beach on a golf trip so it is just mom and I.

I'm having to stay at home pretty much all the time now since it is flu season and there is the additional threat of H1N1. Because of my weakened immune system I cannot have vaccines yet. I also cannot be around anyone who has had a live vaccine for 1-2 weeks (the H1N1 nasal myst is a live vaccine). Don't take this to mean the nasal vaccine isn't safe - we actually use a lot of live vaccines such Polio, the measles portion of the MMR, and the chicken pox vaccine. The doctors at Duke encourage anyone who has access to it to get it.

Also today is grandma's birthday (although she says it is just any other day) so I wish her Happy Birthday!

Amy

Good news today! I do not have to go to the doctor or clinic or anywhere for medical reasons for 2 whole weeks!! My magnesium was still low but they've decided not to do anything about it unless I have symptoms (muscle soreness). So I'm free for 2 weeks.

I've said it a thousand times but I can't stress enough how much I appreciate your support, especially prayers. To give you more of an idea of what we've accomplished here are some statistics I was told at my first appointment with Dr. Rizzieri at the beginning of March. I was told...

- if I did NOT have the transplant there would be a 5% chance I would be alive in 5 years

- there was a 25% chance of finding a matching bone marrow donor (and on top of that I had a perfect match)

- there was about a 1 in 3 chance that I would survive the transplant

Amazing isn't it. I'm glad to be on the other side and thankful for all who helped me get there.

Amy

Good Morning! I had a great weekend at home in VA this weekend and got to visit with some wonderful people. It was very nice to see you all and it definitely helped my "boredom level". I saw Dr. Rizzieri yesterday and things still look good. My magnesium was low again (1.4) but they decided to just let me go and see what the level is on Thursday. They are trying to get me to 1 magnesium infusion a week (which means I will probably only have to go in once a week). My Hickman didn't work again yesterday so they pulled it out. It hurt quite a bit but it had to be done sooner or later. It's much easier to take a shower now and much more comfortable in general.

Thanks for all the support and prayers,
Amy

Hello Everyone! So I have had two appointments since last writing. Thursday I needed magnesium (it was down to 1.3!) so I was at the clinic all day but other than that nothing important happened.

Yesterday I had an actual appointment with Dr. Rizzieri and some of the information we had been told about how the next 6 months or so would go wasn't quite right. They will not wean me off of the immunosuppressant until I reach the 6 month mark (Dec. 6). While I am being weaned off it is important to watch for graft versus host disease. This is around the time we were planning on moving back to Purdue, so my plans may change a little. He said I could move back, but we could tell he would rather keep an eye on me himself instead of referring me to a transplant doctor at IU. So we'll have to make a decision when the time comes. I was looking forward to lowering my dose of immunosuppressant because one of the side effects is "shakiness". My hands are extremely shaky so I cannot write anything legibly (that's why no thank you notes yet).

We got the results back from the bone marrow biopsy and everything looked great (as expected). I am now 98% and 95% donor which is excellent for this far out. Also, my Hickman would not work yesterday so they had to put some type of medicine in it and let it sit overnight and I went back this morning and it worked beautifully.

Much love and thanks,
Amy

It is the much anticipated day 100!!! Now that it's here I'm not really sure what the big deal is other than I had to have a bone marrow biopsy which wasn't bad at all. My favorite PA did it - she uses tons of lidocaine so the spot on my back will be numb all day. My magnesium was low this morning but not too low considering I have not had an infusion since last Thursday. The PA (and I) were very happy with that. He said that in the "real world" they wouldn't infuse someone with magnesium until they reached 1.0/1.1 so a mag level of 1.5 really isn't that bad (1.8 is normal). They are planning on "graduating" me from clinic on Thursday. I will then see Dr. Rizzieri (transplant doctor) once a week for a few weeks then less and less. I will also start going back to Dr. Moore (oncologist/hematologist) for check-ups.

Health wise I am doing great but basically being quarantined to the apartment is getting quite old. I would really like to go out to dinner! With the H1N1 flu threat they are telling us to be very very careful. Also, since some have asked, my toe is fine now - it was just an infection in the skin around that spot :)

Hope you have a good week,
Amy

PS - If anyone has any medical questions or is confused about something I have written about just let me know and I'll try to clear it up - bone marrow transplant really is a neat process that a lot of people have misconceptions about (thanks to TV and movies).

More of the same seems to be the theme of my last few posts and nothing changes in this post. I went to the clinic yesterday the good news is my sodium seems to be consistently normal (so I got to stop taking one of my medications). My magnesium is still low - they gave me 6 grams over 5 hours today and I didn't feel near as bad as I did Saturday. It still makes me hot but it's tolerable.

I also have an infection (maybe an ingrown toenail) in my toe. It was kind of a weird moment when mom called this weekend and asked me how I was and my response was "My toe hurts." It's amazing to think of all that I've been through and now I'm complaining about something as small as a toe. It reminded me that the hard stuff is behind me. However, they put me on an antibiotic for a week just to be extra careful.

Thanks to all - I couldn't have done this without you,
Amy

Good evening. Well I've had two clinic visits since my last update. Thursday's visit was great, both my magnesium and sodium were in the normal ranges. However, they wanted to check how my magnesium did without having infusions for a few days. (my home infusions ran out on Wednesday so I did not have infusions on Thurs. or Fri.). So we went back to clinic today to get my magnesium checked and of course it was low. So I had to have a magnesium infusion in clinic. At home I get 4 grams over 4 hours. At the clinic today they gave me 6 grams over 4 hours and this made me feel really yucky. I got very hot during the infusion and by the time we got home I was nauseous and vomiting. So needless to say I miss my home infusions! We go back on Tuesday to check again and probably get more mag at the clinic. This is the only "problem" that is keeping me from "graduating from clinic" as the nurses say. Also, if I get away from needing magnesium infusions they will take my Hickman out, which will be nice.

Hope you all have a relaxing labor day,
Amy

Hello All - Things are still about the same as they were last week. I still have low magnesium and sodium. Insurance is making it a little harder though. We found out that they will not cover home infusions. This was a mistake on Duke's part and it doesn't sound like we will have to pay for what I've had so far but after Wednesday I can no longer get magnesium infusions at home. They switched the type of magnesium pills I'm taking to something they think may absorb better. The hope is to get me off of magnesium infusions altogether. Hopefully they will come up with something that works so I don't have to go to the clinic everyday again. Once I am off magnesium infusions it also sounds like they will switch me back over to Dr. Moore (the regular oncologist/hematologist) and I will only come to the bone marrow clinic weekly or every other week. This is the stage when most people who live within a couple of hours go home to an oncologist but living 12 hours away doesn't quite work since there are still some clinic visits. SO we will stay here and are hoping to get back to Indiana by the start of the Spring semester.

Much love and thanks,
Amy

I apologize for not updating sooner but there hasn't been much to say. Things are still very much the same except I am now on a Monday/Thursday schedule at the clinic so I only have to go twice a week. My magnesium and sodium are still low so I'm still taking the daily home infusions of magnesium in addition to a mag pill 3 times a day. I also have to start restricting my fluid intake to try to raise my sodium.

On the other hand, I feel great and I can really start to notice my energy level rising - especially if I've gotten a good nights sleep. I even went out to Barnes & Noble today with mom to pick up a few things. Michael flew out to Purdue last night and will be there until Friday so grandma is coming down for the week.

Thanks and Hugs to all,
Amy

Well, as a lot of you have heard I had a great weekend at "home" in VA. I got to see a lot of family and there were many more people I would have liked to have seen but my immune system is not up to it. I even had to see Michael's new cousin Teagan through the window because she had her 2 month shots the day before. They say one of the biggest things that gets bone marrow patients back into the hospital is that you feel good and feel like doing things yet forget that your immune system is still way down.

Yesterday's clinic visit was good but a little long. They had to give me IGG - which I had never heard of. When I told Michael what they had given me he got very excited because that is one of the molecules their research group has studied. He offered to draw me the chemical structure (bigger nerd than me) but I didn't think that would help my understanding of what it was. IGG stands for Immunoglobulin G. It is basically the same as antibodies and will give my immune system a boost. So I learned yet something else new yesterday.

Hope you all are having a good week - and to some of you have a good day back to school tomorrow!
Amy

It's more of the same here in Durham - nothing much to update you on. I still have a Monday, Wednesday, Friday schedule at the clinic. Usually I don't need anything because of the at home Magnesium but this morning I needed some Potassium so I am getting that now.

I think I'm officially feeling good now because the boredom has set in. I spent yesterday alphabetizing my cards... my mom called me a nerd. It gave me a chance to look back through them and appreciate everyone who has supported me through this. I only have the ones here that I've gotten since moving to Durham and they filled up a whole shoe box so far and I'm not done yet. I would estimate there are close to 1000 cards (some are birthday and Easter cards too). Reading them and seeing them makes me feel very loved.

Again, I can't express how much I appreciate each of you,
Amy

The trip to the clinic today went well. It took a long time for the blood work results to come back but when they did I didn't need any electrolytes. The rest of my numbers were also very good. Most notably my platelets were 120 - to put that in perspective they got down to about 10 during treatment and 150 is normal - so we're getting much closer to normal. The only concern is that my sodium is still low.

One of the transplant doctors came by today, Dr. Chute (who is a Yankees fan and a Notre Dame fan so we have to watch him). He seemed very pleased and said they would release me back to Dr. Moore (the regular hematologist oncologist) around day 85 (according to my dad's update today is day 65 - it's hard for me to keep up with what day it is). Most people would be released back to their oncologist at home, but they're not quite comfortable with me moving all the way to Indiana and I agree. Michael is still working in a chem lab at UNC and I wouldn't be able to take classes anyway so we're not in a hurry to get back. Hopefully I will work it out to take a distance learning class from Purdue in the fall just to start giving me something to do and get my brain working again.

I'm starting to feel pretty good and almost normal sometimes and I know I wouldn't have handled this so well without all the support and I can't thank you enough for that!
Amy

Day +61

Yeah!! Another day off from the clinic. They have put Amy on a Monday, Wednesday, Friday clinic schedule and it is very nice. Amy's lab results yesterday still showed her sodium level is low ( told to eat more salt), potassium level finally stable ( keep taking potassium pill), magnesium level still low ( keep taking magnesium IV at home and added two magnesium oxide pills each day) and they added back in the anti-viral Acyclovir . Amy said the morning pill count is getting kind of scary. Her platelets stayed the same, RBC and WBC both went up a bit... which is all good news.

While at the clinic yesterday PA Ashely and one of the doctors stopped by and talked about Amy's next stage . After +/- 100 days the Bone Marrow Outpatient Clinic will refer Amy back to an oncologist. She will probably go back to Dr. Moore - Amy was under his care when in Duke hospital for induction/consolidation in preparation for transplant. Although Amy is not 100% yet, and is still having some problems it is exciting and we are so thankful to have reached this point.

Thank you for your love and support .
Love and hugs to all.
Kathy

Sunday was a good day . Since we had a day off from the clinic, Amy slept in a little longer than usual. Amy has felt good over the weekend. No nausea and her eating is improving and her weight seems to be leveling off. The bottles of magnesium she gets at home are working out great. The bottles take 4 hours to run and that is slow enough that she does not get nasty side effects. It is great to see her feeling better.

Greg purchased a kayak last week, so I told him (when he arrived at the apartment Friday) that was his anniversary present from me... his comment back was "Whens our anniversary?"..... :) We did go out to the Cheesecake Factory for early dinner on Saturday. It was very good but crowded and noisy. We decided next time we would find a smaller quieter place....we are getting old.

We are so thankful for our family and friends.
Love to all,
Kathy

So there are several things to update you on. They are letting me take "baby bottles" of Magnesium home. They literally look like baby bottles with an IV tube coming out of it that we hook up to my Hickman and let it run for 4 hours. The more exciting news is that they are going to give me Sunday off. They also said that hopefully soon I will only have to come to the clinic on Monday, Wednesday, Friday, and maybe a weekend day.

Health wise I'm still doing well. My blood counts have been dropping some so they took me off of one of the medicines that can cause this. If this is the cause, they will put me back on the medicine - they just want to know what's causing drop in blood counts but not necessarily stop it.

Thanks to everyone,
Amy

Day +52

If insurance approves... the clinic is going to let Amy have "baby bottles" of magnesium to take home. She can hook them up and run the magnesium at the apartment instead of the clinic. YEAH! They say it takes 4 hours for one of the bottles to run, so she can do it while she sleeps or watching tv - whenever it suits her. This will be nice for several reasons: Amy will not have to come to the clinic everyday and when she does have to come to the clinic it will be a much quicker appointment.

Someone once said "laughter is the best medicine"... so the other night we watched "Mamma Mia" - and Pierce Brosnan singing ABBA songs was really good medicine. Along that same line.. Sherry we would love to see pictures of you and Brenda parasailing! :)

Love and hugs to all,
Kathy

Day +51

Amy is past the half way point of her first important 100 days. We still come to the Adult Bone Marrow Outpatient Clinic each day for Amy to get magnesium ( and potassium some days). We arrive at the clinic and they weight Amy, take her vitals, then we wait (which could be 5 minutes or an hour, we never know) for the nurses to come draw her blood for her labs. After they draw blood we wait about an hour for her lab results to come back. Then they hook a bag of fluids/magnesium ( and whatever else she needs) to her Hickman lines. Amy usually gets 4 grams of magnesium each day, which takes about 3 hours to run. Amy loves her Hickman line - she was not too sure about the Hickman the first time she had it put in, but it's great now. Amy's nausea has eased up and she has not been sick for several days ( I hope I have not "jinxed" it). She is having a low grade fever (99.0-99.6) off and on. The doctors don't do much until fever reaches 100.5 - then it is usually back to the hospital. We are extremely thankful that other than feeling tired all the time, Amy has been feeling better.

Hope everyone has a good week. Its hard to believe July is almost over.
Kathy

Day +47

Everything is about the same. Still needing magnesium and potassium each day. Amy had some episodes of being light headed and dizzy over the last few days, but she did not have any last night. Talking to a few of the other patients in the clinic, they are having same problems Amy is having: very tired, bouts of nausea/vomiting, some light headed moments, needing magnesium daily and (one I find interesting) her feet and hands are very sensitive. Nurses say all of these are common. Still eating pretty bland, but throat and mouth do seem to be getting better.

Thank you for the cards you are sending, they are a highlight of each day.

Kathy

Good morning .

We are at the Outpatient Clinic and Amy is receiving her daily magnesium. The nurses have finally slowed it down enough that Amy is having less side effects from it. They are checking to see if insurance will cover "take home" magnesium IV, but we don't think insurance will cover it unless given in clinic. Amy has one more day of antibiotic for her urinary tract infection and we hope after the antibiotic is finished her nausea will ease up some.

We have a good daily routine going, but looking forward to the day that Amy gets to skip a clinic visit. The clinic staff is very nice and they do have entertainment (guitar, dulcimer, keyboard) on certain days, but a day off would be nice.

Hope everyone is having a good week.
Kathy

Two posts in one day - this means we have something important to tell you. We got the percentages back from the bone marrow biopsy. There is a 2% margin of error in this test so the lowest it can be is 2% and the highest it can be is 98%. They break down the marrow into two categories and measure the percentage donor in each category. I don't completely understand the categories but in one category I was 92% donor and in the other I was the full 98% donor. So these are absolutely excellent numbers and I feel comfortable now saying that the transplant was successful.

Hope this good news finds you well,
Amy

Day +42

We are at the clinic. Blood has been drawn for labs and we are waiting on results to see how much magnesium Amy will need today. Yesterday she needed magnesium and potassium.
They switched her antibiotic from IV to oral, so she no longer has to get that here.

Amy still has some "bouts" of nausea and vomiting. The "bouts" usually hit her in the mornings and then sometimes again in the afternoon or evenings. Most of the time they come and go without lasting too long. The biggest thing now is she feels tired all the time, but she still has been great about getting on the treadmill most afternoon.

As of today, Amy has lost about 20 lbs., but she is eating good and her weight will probably start leveling off . She is able to eat a wide variety of foods but they must be fairly bland - the least bit of spice still hurts her mouth. She use to love sweets, but now they don't appeal to her near as much.

We are still grateful for the support and love that so many people have shown to us. Amy has received cards from people we did not known, but who wanted to let her know they were thinking of, and praying for, her. To all of you - thank you. Kathy

Again, there's not much to report from here. I've had to get magnesium several times (I'm actually getting some right now) and that is never fun. The good news is they are giving me the day off tomorrow - they feel my levels will be high enough after this dose of magnesium that I will not need anything tomorrow. All the preliminary results from my bone marrow biopsy have been good but we're still waiting on the percent donor/me.

RETRACTION :) - before we left the clinic today some results from a couple of days ago came back and a bacteria had shown up in my urine. So this means I have to get an antibiotic by IV for 30 minutes for at least the next three days. So unfortunately I do not get to take tomorrow off... but hopefully a day off is in the near future.

Thanks, Amy

Hello everyone! There's not much to report from here. Yesterday's clinic visit was long because I needed magnesium but luckily I slept through a lot of it so it wasn't so bad. Today I did not need any electrolytes so we were out of there by lunch time! They did put me on a new med for high blood pressure. The high blood pressure is a side effect of one of the other medications I'm taking. I've kind of figured out that the gist of post-transplant treatment is that you need immunosuppresents, anti-viral, and anti-fungal medication. Then tons of other medicines are added to offset the side effects of the medicines that you need. I feel like the doctors are doing a big balancing act with my body - but they do this all the time and I trust them completely.

Hope you all have a wonderful week,
Amy

Yesterday's clinic visit was very long. My blood work showed that I needed both magnesium and potassium. The magnesium makes me very hot and just feel "yucky" so they have to run it very slow so we were there until around 4:00. They also put me on a very restrictive diet (sweet potatoes, cream of wheat, some bland cereals with lactose free milk, etc.) because they thought I may have graft versus host disease in my digestive system.

Today's visit was much better. I did not need any magnesium - this is the first day in weeks that this has been the case. The current rounding Dr. at the clinic (Dr. Sullivan) reviewed my chart in more detail and thinks that I do not have GvHD in my digestive system so he took me off the restrictive diet and put me on a high sodium diet since my sodium level is still low (which you can imagine is quite the opposite). So I am much happier with the foods I am being able to eat now.

They also did a bone marrow biopsy today and the results of this will tell us a lot about the success of the transplant. It will take a week or more to get the results but they will be able to tell how much of my bone marrow is donor cells and how much is my own leftover bone marrow. The goal is to be at least 80% donor cells so our fingers are crossed.

Amy

Guess What! I'm OUT of the hospital!!!! Hopefully this time it will be for good. I told Michael today that this feels like the first time I've been "home" because I felt so lousy the last two times they released me.

My sodium level came up a little this morning so the doctors were comfortable letting me go - although it still needs to come up more. The only two things I have to complain about (which Michael and mom have heard a lot of) are my mouth sores and fatigue. The mouth sores are better but still hurt, especially when I eat. For now, I will go to the clinic everyday for blood work and to get anything I need through IV.

As always, we can't thank you guys enough for all the support,
Amy

One more day....
Amy's sodium level was low so the doctors are keeping her in hospital "one more day" .
She is feeling tired and a little achy, but the nausea and vomiting have not come back.
Her mouth still hurts , especially with certain foods or drinks. Foods do not taste like they are supposed to, most have a real "salty" taste.

Also, they have added a new medication (demeclocycline) and limited her fluids, to help with sodium level. The doctors wanted to make sure she did not have nausea/vomiting as a side effect before releasing her. So far no side effect has shown up. Amy does have a lot of medication to take each day. At last count , she will be taking approximately 20 pills a day. The worst side effect Amy has right now is when they have to give her magnesium. No matter how slow they run it, she gets extremely hot and flushed. Thankfully, she does not seem to have any other major side effects from anything else.

We are still astonished at the amount of support we have received. Amy reads and appreciates every card, email, or blog entry. We are comforted with all the prayers , support and love given.
You have all been a blessing to us. Thank you. Kathy

Day +29

Amy's nausea and vomiting are better...YEAH!!! Saturday and today she has eaten more and kept everything down. If she continues to do well, she will probably go home Monday or Tuesday.

The Outpatient Clinic gave us a long list of things Amy can 0r cannot do for the next 3-12 months (or things she can never do )... here is a sampling:
1). No yard/gardening work, especially around mulch (12 months).
2). Cannot clean up after a cat or dog, or own a new pet (12 months).
3). Cannot drive (until physician gives okay).
4). Cannot work ( 6 months or longer- until physician gives okay)
5). Must use sun screen every day (life long)
6). No sunbathing or tanning beds, must wear protective clothing and hat when in sun (life long)
7). No eating at buffets, salad bars or public dinners where food is set out for everyone. (life long)
8). Change toothbrush weekly, avoid dental floss. (life long)
9) Cannot be in a house/building that has active wood burning stove or fireplace (6 months)
10). Never own a pigeon. (life long) -and she really wanted one :)
Thought some people might find this interesting.

Hope everyone had a good 4th of July.
Please continue to pray that everything goes well and Amy continues to feel better.
love to all, Kathy

Hi everyone! I hope you guys had a good Friday. After my appointment at the clinic they decided to put me back in the hospital (We find it kind of funny that the clinic wants me in the hospital yet the hospital seems to want to send me out to the clinic.) My nausea/vomiting are still not any better, and thus it's hard to keep anything down. This makes me dehydrated and causes my electrolyte levels to be off. So the goal is to watch me closer in the hospital and hopefully find out where the nausea is coming from. There are several possibilities. One is that the mucositis sores in my stomach have caused irritation. Another small possible is that this is the onset of Graft vs. Host Disease. Anyway, I just want them to figure out what's causing the nausea and make it stop!

Hope you all have a good 4th of July,
Any

Amy is back at the apartment. Dr. Chao released her from hospital late yesterday afternoon. she is still having nausea/vomiting, but they feel it will clear up as the irritation in esophagus and stomach heal. Amy will have appointments at the Adult Bone Marrow Outpatient Clinic everyday (7 days a week including holidays) for the next month or two. Depending on how her blood work is for the day, the visits could be anywhere from a couple of hours or take the whole day.

We continue to be thankful for all your support and love. Kathy

This morning they scoped Amy's digestive tract. The only thing they found was irritation in her esophagus and stomach. They will put Amy on medication (pepsin) for a while and see if that helps. The nausea and vomiting are much better. She has been able to eat and drink some ( and keep it down). Hopefully , in another day or so, Amy can try going home again.
Kathy

Amy started having nausea and vomiting Sunday evening. Doctors came by Monday morning and released her from hospital. After arriving back home , Amy's nausea and vomiting became worse. Last night she was up almost every hour vomiting . She had an appointment at the outpatient clinic this morning and the doctors ordered anti nausea medications, steroids , potassium and IV fluids - but Amy was still getting sick....so she is now back in the hospital.
I asked the nurses if Amy had the quickest return time back to the floor. They said no, not even close.

Not exactly sure where nausea/vomiting is coming from. Most seem to believe it is a mixture of things.... the mucositis in her stomach/intestines, coming off the TPN and trying to eat food again, and possibly medication side effects. Whatever the cause, it became a vicious circle. The more Amy got sick the more her system got irritated and caused more sickness. They are now trying to break the circle and calm her digestive tract down. She has not been as sick this evening and has been able to get some rest. So please pray they get her nausea/vomiting under control and she can start to eat real food.

Sorry to report but these last couple of days have been the worst for Amy since the transplant.
So please keep her in your thoughts and prayers. Kathy

So not much has happened since yesterday but I had a few successes today so I thought I would do an update. Today I ate about 2/3 of a pudding cup and a can of cream of chicken soup. This is the first time in a week I have been able to eat more than a bite or two of something. My white blood count came up to 4.0. Also, Dr. Chao's goal is to release me Monday (so pray that nothing gets off track!)

I cannot believe how smoothly this hospital stay has been - I know this is an answer to the many prayers that you all are responsible for and I can't thank you enough,
Amy

So since Monday my white blood count has risen to 2.5. My platelets are also increasing daily without transfusions which means I am making my own platelets! The throat and mouth sores are still here. I'm still at the point where everything I try to eat makes me cry after a few bites (even ice cream). However, I've been told that I will feel like a new person very soon.

To add some excitement to our day yesterday I had a little accident: I fell out of the shower and hit my head on the toilet. Don't worry, I'm fine - you now have permission to laugh and make fun of me. Dr. Chao told me this morning he was going to get me a football helmet. They did do a CT Scan of my head just in case, but it was fine. I find it interesting that the showers in a hospital are extremely slippery.

The big news of the day is that Dr. Chao said he was hoping to discharge me on Monday or Tuesday. So if everything goes smoothly I could be out of here much sooner than we expected - obviously we're very excited. Mom is working on all the things that need to be done before I come home to the apartment. The carpets and couch have to be professionally cleaned, the duct work needs cleaned, etc. We have to be very careful over the next 6 months or so because of the immunosuppressents I will be on.

Amy

Day +16

Amy's white blood count went down yesterday to 0.5 but rebounded today to 0.7. The doctors and nurses have told us that her WBC will be going up and down as Amy's new stem cells start working. Amy's throat is better but cheeks, tongue and inside lower lip have ulcers , are swollen and very painful.

A package arrived for Amy from the Green Bay Packers, welcoming her into the "Wisconsin family" (since her new stem cells came from Wisconsin). She received many items from them, including a football signed by all the players. Thanks MBAs.

One of my favorite things is when Amy receives cards made by students from various classrooms. I love the drawings, spelling and laughs many of the cards bring. Thanks to all the teachers who gave their students time to create these "masterpieces".

Kathy

Day +14

Amy's white blood count went up to 0.2 on Thursday and rose today to 0.6 . Normal white blood count is between 3.2 - 9.8. We are optimistic that this means engraphtment is occuring...or close. ( Engraphtment is when the transplanted stem cells from the donor start making blood, platelets and immune cells.)

She is still having mouth pain. This is accompanied by coughing up a lot of mucous which in turn makes her throat hurt worse. At the moment, her two favorite things are ice packs and morphine . Dr. Rizzieri came by this morning and is very pleased with her progress. He seems to think as the white blood count rises her mouth/throat will improve , especially over the next 48 hours.

Day +11

Side effects seem to be leveling off over the last few days. Amy's mucositis isn't better but thankfully has not gotten any worse today. She still is unable to eat or talk. Her cheeks and neck are very swollen, which is not painful but uncomfortable. What hair Amy had grown back was falling out, so one of the nurses shaved her head today.

The nurses commented that they are impressed that she is still getting on the treadmill and walking a mile to a mile and a half each day. She has divided the time on the treadmill into 2 or 3 shorter times a day instead of doing it all at once .

A few comments about the Adult Bone Marrow Unit at Duke Hospital. It is located on the 9th floor and there are three doors you must pass through to enter the unit. You have to make sure the door behind you has closed before opening the next door. Once in the Unit, you have to go to a hand washing station and wash hands , then you can go through the 4th door onto the floor where the patient rooms are located. There are 15 rooms. Since being here 8-12 rooms have been in use. The whole unit has a special air filtration system. Duke does several types of transplants here which include bone marrow, peripheral blood stem cells, chord blood or a half match from a parent or child. Amy received peripheral blood stem cells. She is the only one on the hall who had a perfect match unknown donor (MUD). We now realize that finding a perfect match from an unknown donor is hard to do.

There have been many answers to prayer and blessing .... we feel very fortunate to have so many people in our corner supporting us. Thank you. Kathy

day+8
Good morning,

Friday night and part of Saturday, Amy was having severe mouth/throat pain, but the nurses have changed Amy's morphine pump to a morphine drip & pump. The morphine drip keeps a steadier level of morphine in Amy's system. Cold compresses (bags of ice) are also helping to alleviate her mouth/throat discomfort. Amy was able to sleep much better last night. With new side effects comes a "learning curve" as to what works best to diminish them.

Amy is no longer able to eat much of anything, even jello and ice cream hurt to swallow. They have put her on TPN - a milky looking liquid that feeds her nutrients through her IV . She's now using a dry erase board and a little bit of sign language to communicate with us. Back in March, the chemotherapy had affected Amy's eyes and she basically could not see for a week or more . She was trying to decide which was worse - not being able to see or not being able to talk. She decided that not being able to see was worse.

Again, thank you for all the cards, letters, prayers, phone calls, and gifts. The support and love shown to us helps sustain us and we are extremely grateful.

Kathy

Day +6.
Amy is having moderate to severe mouth/throat pain. She now has a morphine pump at her beck and call. I will go out later today and buy a dry erase board for her to write on, so she does not have to talk as much. Milk shakes and soft foods are her main diet since swallowing is hard and painful.

Her Hickman line incision on her neck that they used to insert the line is sore and inflamed. The doctor cultured it and changed one of her antibiotics to help this, if it doesn't help they may take the line out. But this morning it seems better and not as sore.

The little bit of hair Amy has is falling out again. But this does not bother her.
She is still in good spirits and wrote that if she did not have to talk, eat or take pills , she would be fine.
Kathy

It's day +2 and things are still going well. My donor cells will start "engrafting" into my bones soon so I'm told most of the side effects are still to come but as of now I'm tired but feeling pretty good. I will be neutropenic (low white blood cells so high risk of infection) for about 3 more weeks and hopefully I will get out of the hospital in about that amount of time. It's also common to get infections once I get out of the hospital and have to come back in. In addition, it will be an ongoing recovery process of whether my body accepts or rejects the cells. With all that said, I feel like the end of the difficult part of the treatment is in sight!

Hope you all have a good week! Amy

Amy received the new stem cells between 1 and 2 o'clock this afternoon. The only initial reaction she had was her left cheek became red and hot which has since gone away. This may have been from preservatives that were added to the donor's cells. She is very tired, but still managed to walk a mile on the treadmill.

The nurse informed us that Amy's donor is male and from Wisconsin....let the cheese jokes begin! Now Amy's blood type will switch from her O+ to the donor's A+. Amy will have two DNAs.... her marrow and blood will be the donor's and the rest of her body's DNA will be her own. This birthday has been unusual, but Amy has received many cards and gifts which she really enjoyed. A big "Thank You" to all who sent birthday wishes... through the blog or mail.
Kathy (mom)

So one more radiation treatment to go in the morning and then the big day!! I'd be lying if I said I wasn't nervous but I think that is expected at this point. However, I'm feeling good overall - I'm still able to eat without much nausea and no mouth sours yet. I'm sure these things will come but I expected them this week as well - so it was another pretty good week for me. We have lots to be thankful for including all of you, much love, Amy

Hi everyone! It's Tuesday so I'm finished with my chemo and have had 4 radiation treatments thus far. The radiation makes me very tired and somewhat nauseus but they have put me on a new anti-nausea drug called Amend which seems to be helping. I'm still eating and have only gotten sick once so that is a blessing to me. Hopefully these next few days will go as well as the first few have. I'm not feeling wonderful but it's much better than I felt during my second induction treatment.

Thanks for all the prayers, support, comments, and all the stuff I cannot think of right now,
Amy

I checked into the bone marrow wing yesterday morning. It's exciting to finally be here. The rooms are actually a little bigger than the rooms on the "chemo wing" that I was on. They're also more "updated" as far as decorations/medical equipment etc. It's nice to be in a different type of room - any change of scenery helps. They also have a small "gym" on this unit with a treadmill, bike, and weights so I'm trying to continue my walking - although I'm sure I won't feel like doing it in a few days. However the physical therapist is here to work with me and keep me moving (Katie you should be proud). I had some trouble getting to sleep last night - it could be a result of the steroids I am on to help with nausea or just being in a new place. Either way hopefully it will get better.

I had my first chemo treatment yesterday about 4 and it ran for 2 hours. I will get my second one sometime today and *hopefully* this will be my last chemo treatment for at least a very long time. I start radiation tomorrow at 8:00 (which means they pick me up from my room at 7:30) and then I will have another "fraction" (that is what they call a treatment) around 4:00 tomorrow as well.

Thanks for all the cards, prayers, good wishes, etc. that you all are sending my way. While I was home I loved going to the mailbox each day - it definitely brightened my day. Hope you all have a good first week of June (I can't believe it's already almost June), Amy

So I got my new central line put in today. For those of you who don't know what that is it's basically a permanent IV - it's a tube that comes out of my chest that they can hook up to 3 things to. They can also draw blood from it so it keeps me from having to get stuck. So far it's not very sore at all so hopefully it stays that way. My lung test went better on Wednesday so the only thing they are changing is that they are going to shield my lungs a little more during the radiation - they are not decreasing the dosage of the chemo like they thought they may have to do. This will kill off more of my bone marrow which makes the chance of relapse of the Leukemia smaller so I'm glad my lungs were strong enough to go ahead with the high dose chemo. I go in the hospital tomorrow at 8 am and start the chemo. These last few weeks have been great out of the hospital and I can definitely say I'm ready for this!

Also I want to send out a thank you to Ashley Haggerty and everyone who helped at the bake sale. She also has more of the ribbon magnets for $5.00 each - you can email her at misshagg@aol.com if you would like one. Here is a picture (they're actually orange):

Still not much to report. I'm still feeling good except I'm getting low grade fevers in the evenings. The doctors don't seem worried about it and have just told me to take tylenol to bring my temperature down. I'm still worried about them a little but Michael reminds me that I do not have a medical degree and therefore I need to listen to the doctors and not worry about it. Since there's not much to update you on I thought I would explain the transplant process in a little more detail.

I will probably be in the hospital 5-6 weeks. There will be one week of chemo/radiation to kill off my bone marrow then the transplant. The transplant just consists of them giving me the donor's bone marrow stem cells through a normal IV. Then the recovery period is about 30 days in the hospital (plus lots of time out of the hospital). During this time there is a risk of infection because my white blood cell count (the infection fighting cells) will be low from the chemo plus they will be giving me drugs to suppress my immune system so my body doesn't reject the donor's cells. The other risk during this time (and for a while after the transplant) is graft versus host disease (GvHD) which is basically the donor's cell fighting my body. The process of the donor's cells finding their way into my bones (called engraftment) will make me pretty sick (nausea/vomiting, mouth soars - a lot of the same side effects as chemo). After this is will take a long time (a year or more) for my immune system to build back up and for my energy level to be back to normal but I have lots of people to take care of me and help me during this time. So that is what I have coming up. It's a little daunting as it gets closer but at the same time I'm excited that this is the last big hurdle I have to get over. I hope this explanation makes sense and isn't too much medical info I just thought some of you guys might be interested.

Hope you all have a good Memorial Day!
Amy

Good Afternoon! We got the bone marrow results back and it was clear!! However my lung test was not the best so I have to redo it next week and if it is not better they may change my pre-transplant regimen somewhat. I'm still resting yet walking at least a mile a day as Dr. Rizzieri has suggested. I also wanted to make a post for two more reasons:

First, today is my dad's birthday so everyone wish him a happy birthday! He's getting to be quite an old man :) - Just kidding! Love you dad!

Also, I wanted to let you know there will be a bake sale at Walmart Friday from 3-8 and they will hopefully have orange ribbon Leukemia awareness magnets - a lot like the pink breast cancer ones you always see.

God bless you all! Amy

Hello Everyone! We're still doing good and still out of the hospital here in Durham. I had a bone marrow biopsy today - this makes my fifth one so far and it was by far the least painful. I also had a pulmunary test today to test the functioning of my lungs. We should get results by Thursday from the bone marrow biopsy. The schedule is still to go in the hospital the 30th and have the transplant on June 6. I've really enjoyed the week out of the hospital so far. My taste buds are back to normal and Michael has been cooking me some excellent meals. He is flying back to Purdue today until Thursday to get some work done.
Hope all is well with you all, Amy

Good news - I'm out of the hospital and it feels wonderful! This seemed like the longest hospital stay to me so being out is really lifting my spirits. The schedule for the bone marrow transplant has been pushed back due to some conflicts with the donor. As of now I'm scheduled to go into the hospital on May 30 and get the transplant June 6 (my birthday). This will give me quite some time out of the hospital to regain my strength and get mentally ready for the transplant. Although I was looking forward to getting the process started I think these few weeks out will do me a lot of good. The only concern is that the Leukemia will come back during this time but we're hoping and praying hard that it doesn't.

As always I can't thank you all enough for the support and prayers,
Amy

So I'm STILL in the hospital. Luckily I am off the oxygen now and breathing fine and feeling good as well (no fevers). My respiratory problems are also improving daily. The plan as of now is to go in the bone marrow unit next Monday (the 18th) to start the preparatory radiation and chemo. This all depends on getting a clean bone marrow biopsy this week, which I am somewhat nervous about. I am very anxious to get the transplant process started. This is the last big hurdle and also the most critical point in my treatment. The doctors will decide tomorrow if they will let me go to the apartment for a while or if they would rather keep me here until I switch over to the bone marrow unit.

We would also like to thank everyone who helped with the very successful bone marrow drive yesterday. 95 people were added to the registry! A special thanks goes out to Kelly for organizing it all. Thank you also to those who registered - I can't tell you how important this is.

Well we have another postponement. The transplant will be postoned at least one more week due to the respiratory problems I've been having. When I'm sitting I'm fine but I can't do simple things like get up and go to the bathroom without getting out of breath/coughing. So please pray that they can get this cleared up and get my body ready for the transplant. Having a good respiratory system is very important when having a bone marrow transplant. Overall, I'm feeling better (since I haven't had a fever since Sunday when they took out the central line out).
We knew set-backs would happen but it is tough to go through them. Hopefully in a few weeks we'll be back on track.

Thanks for your love and prayers, Amy

So as planned they took out my central line yesterday afternoon and I have not had a fever since and feel much better! So at this point I'm almost positive that the central line was the source of the infection. I will get a new central line sometime before the transplant. I have had a bad cough which is now the focus. They even put me on oxygen because I can't breathe deep without coughing. The idea of going on Oxygen bothered me at first but it has actually made me much more comfortable. Today I will have a CT scan of my chest and tomorrow they will do a procedure to biopsy "anything" in my lungs. I also woke up this morning with some mouth sores which is surprising because I have not had many problems with them before. Overall, I'm feeling really well - I just need to get rid of this cough.

So we're still in the hospital. I keep spiking fevers even though my bloodcounts are up so the next step to find the source of the infection is to take out my central line. They will put a PICC line in my arm today and take out the central line tomorrow. Hopefully the infection is in the line and this will take care of my fevers. I'm not excited about having to have a new central line put in, but it's the next step and hopefully it will make me feel better. They're still trying to get me home for a few days before the transplant process starts.

We have a little bit of a change in our plans. Due to the fact that I'm still in the hospital and still recuperating from the last round of chemo they have pushed my bone marrow transplant back by one week. I will be admitted to the bone marrow unit on May 11 and receive a week of radiation and chemo and then have the bone marrow transplant on May 19. This will hopefully also give me a chance to get out of the hospital for a few days before the long stay begins. The only real side effect I am having right now is from the build up of anti-nausea medicine in my system.

So I'm still in the hospital and will be until my blood counts start coming back up. Hopefully I'll at least get a few days out before I go into the transplant unit. I've had some nausea from the medications and have spiked a high fever everyday so I haven't felt the best. Hopefully my blood counts will come up soon and these problems will go away.

Unfortunately I don't have good news today. I got a fever last night and had to come back to the hospital. They've put me on IV antibiotics to hopefully kick whatever is causing the fever. My temperature is down today so this has made me feel much better even though I'm in the hospital. This isn't out of the ordinary and doesn't really set us back any long term.

Amy

So today we got the news we've been waiting for. We got word that my bone marrow match is willing and able to be a donor!! From this point things will move a little fast. I will re-enter the hospital on May 4 to start a week of both chemo and radiation in order to wipe out my bone marrow and then May 12 will be the big day of the transplant. I will be in the hospital at least 30 days after the transplant occurs.

We praise God for having such a quick and easy time finding a donor. It doesn't happen this way for everyone and this is why it is important to join the National Donor Registry.

Hi everyone. As planned I was released from the hospital today and am back at the apartment. The week went extremely well considering my past rounds. I am having a little nausea but it seems like it is being controlled my the anti-nausea medicines well.

Tomorrow I go to the clinic for a shot to help my blood counts recover more quickly. I am also going to have lots of "baseline" tests that they do before a bone marrow transplant to be able to track any damage done to my body from radiation/chemo/or the transplant itself. It will be a long day but they are all things that need to be done.

Wishing you all a good week,

Amy

There's not much to report from here. So far I'm feeling good and haven't had any side effects from the chemo but it is still early. We're still hoping for a good week!

We send out a big thank you to everyone who helped with the very successful golf tournament yesterday. I know my dad had a blast and hope everyone else did too!

Amy

So I am back in the hospital for the "consolidation" treatment I have written about. It is one of the same chemo drugs I had for the first two rounds but instead of 12 treatments I will get a total of 6 treatments and they will be spread out more. My first treatment will be tonight and my last treatment will be Sunday morning. Hopefully I will be released Sunday afternoon. This round of chemo definitely should not be as hard as the last so I'm hoping for a good week.

God bless you all,

Amy

GREAT NEWS TODAY!!! We can officially use the word remission! We got the results from Tuesday's bone marrow biopsy and there were absolutely no signs of leukemia. This allows us to move forward with the plans for the bone marrow transplant (to have a bone marrow transplant you must be in remission). All other plans stay the same, I will go in the hospital on Tuesday for a 5 day chemo treatment to keep me in remission.

Hope everyone is having a great day,

Amy

Hi, Greg (Amy's Dad) here, I asked Amy if I could post a message today. Things are still going well here, Amy feels pretty well but gets tired easily. Her tastes are improving, at least to the point where she can find foods to enjoy. The bone marrow biopsy is still scheduled for Tuesday, assuming we get a clear report, the marrow transplant will still be a minimum of six weeks away.

My main reason for posting this message is to attempt to thank all of you for your continued love and support. The outpouring of support has been absolutely tremendous and overwhelming for all of us. We have attempted to thank many of you individually but there have been so many others, that we don't even know who you are. The "Cucci" day, the hymn sing at our church, and the benefit sing at Scott Hill were all wonderful, and the upcoming golf tournament already has many signed up to play. I just do not have sufficient words to express our true feelings of gratitude. Thank you all, many many times over.

Many of you know that I send out a daily update e-mail, totally separate from this blog site.
If you wish to be added to that e-mail list, then simply send that request to gevess@aol.com and you will be added to the list.

Love and prayers to all, Greg Vess

So my appointment with the doctor went well this morning. My blood counts were "more normal" than they have been since this started so this is a really good sign. For those of you familiar with blood counts my white blood count was up to 7.1 which is in the normal range. Platelets were 88,000 which is still low but again higher even than my initial blood work before the original chemo. However the good report, today hasn't been the best day as far as how I'm feeling. I had a lot of trouble sleeping last night and some nausea this morning so they were nice enough to postpone my biopsy until Tuesday.

The next step will be what they call a "consolidation" chemo treatment which will be the week after next (sometime the week of 4/13). This will be a 5-7 day chemo treatment but it will not be as strong as the last one. It is also my understanding that I will be released from the hospital after the 5-7 days and stay out until I spike a fever which is very common.

This is lots of medical jargon so I hope it makes sense. As always thanks for the prayers I know they are being answered.

Amy

Hi everyone - obviously it's been a while since I have posted anything - the last month or so has been a big blur. This round of chemo was much harder to go through and I had many more side effects to deal with. However, it's all worth it since this round worked. I'm still extremely tired and having some nausea - I'm not feeling as good as I did after the first round, but again this round worked so I can deal with it. The most frustrating thing is that most foods just don't taste like they should - I'm sure anyone who has had chemo before can relate to this. Fruit and clam chowder seem to be the exception - very odd.

I have an appointment with Dr. Moore on Thursday to have another bone marrow biopsy to make sure the Leukemia hasn't returned. We will also probably be planning a "consolidation" treatment for sometime in the next week or two. This is basically a shorter chemo treatment that is used to keep my body in remission. It should only require a 3-4 day hospital stay unless I have any fevers. If all goes well the bone marrow transplant should take place in 6-10 weeks. So that is the plan for now.

Thanks for all of your prayers, cards, emails, comments, ect.,

Amy

The big news for the day is that Amy was released from the hospital this afternoon. Her white blood cell counts have come up a good bit so they felt comfortable releasing her. We are not really sure what will happen next. We are waiting to hear from the doctors early this coming week. Depending on how things go with the donors, Amy could either be heading soon for the bone marrow transplant or she may end up having to have another chemo treatment (although if that is needed it should not be as tough as the past two).

We got some good new from Dr. Rizzieri's office about possible bone marrow donors yesterday. The PA from his office who is in charge of the donor search called and talked to Kathy. She informed her that they have selected 3 possible donors for further testing. One of these possible donors has actually previously been tested more extensively and it turns out that they are a perfect match to Amy. This of course is great news. They still will further test the other two donors as they like to have as many options available as possible.

The next step is to wait for Amy's bone marrow to make new cells. The increase in white blood cells as reported yesterday is a start. What they want to do is give her body some more time to make cells and then they will do another bone marrow biopsy. The point of the last biopsy was to see if the chemo worked. This next biopsy will be done to see if Amy's body is making normal cells or more leukemia cells.

If things look good with the next biopsy and the donor search gets finalized then plans for the transplant will start to be made.

Amy is still running a fever off and on. She is very tired from lots of medications. Let's hope she gets rid of this fever soon.

Amy is still battling this fever. She continues to be rather tired. This is probably due to the combination of the fever and lots of medications. She also has been dealing with a rather vexing cough. Her blood results for today showed the first increase in white blood cells. She still has a way to go, but at least there is some progress.

Last night Amy developed a little fever. They have since put her on two antibiotics. Her getting the fever is no big surprise, with her blood counts so low the doctors fully expected her to get a fever at some point.  She has been a little worn out as you usually do when you have a fever, but she has been able to rest well.  

We did get the final results from the bone marrow biopsy that she had Friday and we can happily say that the bone marrow was clear of any leukemia cells.  

She will continue to be in the hospital for another week or so at which point she should be able to go the apartment and stay for while.  The next step is to wait until a donor is found.  

Not a lot of news to report. Amy is feeling pretty good. Her eyes are slowly staring to feel better. She continues to be frustrated over the fact that nothing tastes like it should taste. Almost everything she has tried to eat she has not liked because nothing tastes normal to her. She did have another bone marrow biopsy yesterday morning. We are still waiting to hear results from this and may not know anything until sometime next week.

Today was a pretty good day for Amy. She rested well last night and some this morning. She even felt good enough to talk a short walk today. Food and drinks are finally starting to have a more normal taste. She is still eating bland foods and small portions. She is really looking forward to having some good food in a few days. The only problem she is having right now is that her eyes are really dry. Not exactly sure if this is a side effect from the chemo or if it is because she has been a little dehydrated. Regardless of what it is from, it is quite annoying as she can only keep her eyes open for a little while at a time. Other than her eyes being dry things continue to go well.

Amy has started to feel much better the past day or so. She sat up in bed all day yesterday and was able to eat a few popsicles and some Jello. They have finally got her nausea under control so that is a big help.

We did receive some good news about the bone marrow donor search yesterday. They called and told us that their preliminary searches have come up with a few possibilities of donors. The next step is for them to do more extensive testing of the donors to see how good of a match the bone marrow will be. We are still at least a few weeks off, before we know for sure if they have found a good enough match.

Along these lines, Kelly Vess has been doing a lot of work organizing a bone marrow drive. While this drive will not directly be of help to Amy, we feel that it is very important to try and get as many donors as possible on the national registry. We will keep you up to date as we get more details.

The plan continues to be to wait and watch Amy's blood counts rise. Talking with the doctor this morning it seems like it is their plan to keep her here in the hospital for possibly another 20 or so days. Unlike UVA, Duke feels that it is best to keep leukemia patients in the hospital for a longer time after treatment.

Amy has been pretty worn out the past couple of days. She had also been having quite a bit of nausea. They have been good about trying to keep her nausea under control. The medicine that seems to works best makes her rather tired, so she spends most of her days sleeping. The last dose of chemo was finished yesterday around lunch time. Now that the chemo is over, her blood counts should start to recover and she should start to feel better. We will continue to keep you up to date on any major happenings.

Amy has been rather tired all day today. This is probably a combination of the chemo itself, the fact that she has had a little bit of nausea and the medicine they give her for it makes her sleepy, and finally she doesn't have much of an appetite so she has had very little to eat.

Amy got a special visitor today named Gus. Gus is a golden retriever and he is part of the pet therapy program. Gus came in and got up on Amy's bed and when it was time for him to leave they had to pull him off of the bed.

The ninth of twelve bags of chemo was started just a couple of minutes ago, so the end of this treatment is in sight.

So there's not much to report today. I'm still feeling good. I will probably have some side effects (nausea) in the next few days but so far so good. I haven't had to deal with the pain from having my central line put in or indigestion like last time so that has made this time better so far. It is also nice that since I don't have chemo a full 24 hours a day they unhook me from my IV pole between treatments. The new chemo drug that they are giving me is a very pretty "Duke" blue. Although the doctors assured me that they're not just giving it to me because I'm at Duke (:

I heard that the event at church last night was a great success and wonderful evening for all who attended. Again, the support I have been shown is just amazing and I thank all who were involved.

Amy

So I am sitting in my cozy new room at the Duke University Hospital. It's a little smaller than the BIG room I had at UVA but I have to say the bed is more comfortable. However, it is yet to be determined how the Duke hospital food will compare to that of UVA (the most important factor or course). I feel very comfortable so far up on the oncology/hematology wing. The nurses, nurse practitioners, and doctors have all been very welcoming so far.

I will start my next round of chemo tonight around 9:00. They are giving me two chemotherapy drugs. One of them is one that I received at UVA but they are giving it to me in a higher dosage over a shorter period of time. Instead of receiving it constantly for seven whole days I will have two one hour treatments a day for six days. This can make a difference in how the Leukemia reacts to it. The second drug is a new drug that I will get once a day for the first three days. Hopefully these drugs will kill off all the leukemia cells in the bone marrow this time.

We also have a new mailing address for our townhouse here in Durham:

104 Lochridge Dr.
Durham, NC 27713

As always thank you, thank you, thank you!

Amy