Tuesday, June 30, 2009

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

Friday, June 26, 2009

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,

Thursday, June 25, 2009

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.


Monday, June 22, 2009

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".


Saturday, June 20, 2009

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.

Wednesday, June 17, 2009

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

Sunday, June 14, 2009

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.


Friday, June 12, 2009

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.

Monday, June 8, 2009

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

Saturday, June 6, 2009

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)

Thursday, June 4, 2009

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

Tuesday, June 2, 2009

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,