Thursday, December 31, 2009

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,

Monday, December 28, 2009

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,


Saturday, December 26, 2009

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,

Wednesday, December 23, 2009

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

Monday, December 21, 2009

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!

Saturday, December 19, 2009

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

Friday, December 18, 2009

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,

Tuesday, December 15, 2009

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,


Sunday, December 13, 2009


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

Friday, December 11, 2009

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.

Thursday, December 10, 2009

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!

Tuesday, December 8, 2009

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,

Monday, December 7, 2009

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

Thursday, December 3, 2009

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,

Wednesday, December 2, 2009

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: 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,