Sunday, August 30, 2009

Bits and Pieces

Sharon and Bob went to a Greek Festival on Saturday.

She has been doing a lot of reading. Heather introduced Sharon to Sue Grafton's alphabet series. She's already read A through F and had to order some others.

At the Gift of Life House, they have jigsaw puzzles in some of the common areas for people to work on. She has been helping to put the puzzles together.

It was rather chilly there this morning. Sharon said it was 48 degrees. She did say it warmed up nicely though.

So far, she has not experienced any side effects from the chemo treatments she has received which is wonderful.

She will continue with the chemo treatments through September 2. She will have a day of rest of September 3. Then, on September 4, she will have the stem cell infusion.

August 30, 2009

Sharon received another round of chemo.

Marianne reviewed what medications had been taken since yesterday and took Sharon's vital signs. She also gave Sharon and Bob a few suggestions of places to visit in their free time. One of which is Pill Hill. Sharon said this is a very affluent area where the doctors live.

Sharon learned that she can only use Johnson & Johnson baby shampoo.

August 29, 2009

Sharon has her first chemo session today. They last about thirty minutes.

She received a seven day mask, special soap, a seven day toothbrush, one time mouth swabs and a special hand cream. She cannot use any other type of hygiene products.

Bob picked up the new regiment of medications at the pharmacy which includes the medications to avoid Graft vs. Host Disease.

August 28, 2009

Sharon had to receive one unit of platelets before they could begin the Hickman catheter procedure.

Once the platelets were in, Sharon was placed under anesthesia and the central venous catheter or Hickman was surgically implanted. This catheter has two tubes. One of which allows them to draw blood without constantly sticking her with a needle. The other is where the chemo medication is given.

Sharon and Bob had to take a bone marrow transplant education class. Here they learned the following:
  • She has to stay away from anyone that is sick.
  • She has to wear a mask if she is outside.
  • They learned of dietary restrictions. She cannot have any fresh fruit or vegetables. These are a concern because they don't feel as though you can clean them well enough.
  • Had a review of her medications
  • Received her activity expectations
  • Learned that hand hygeine is very important
  • She cannot wear her contacts.
  • She cannot wear makeup.
  • Oral hygeine must be done four times a day.
  • She must shower every day.
  • Every seven days the central line must be cared for.
  • She should expect appetite changes, some hair loss, mouth sores and fatigue.
  • She has to monitor for fever or chills, diarrhea, rash, increase in pain, and bloody nose.

Most patients do better on an outpatient basis which is what Sharon will be.

August 27, 2009

Pat and Steve head back to Ohio.

Sharon had more blood tests. She and Bob also visited the pharmacy. Bob said this will be their home for the next four days up to four weeks. Sharon will continue to have lab work done in the mornings and consult with with nurses and nurse practitioners.

The doctors have adjusted her medications. They have removed some, added some and informed her of medications she will need to take for a year after the transplant. She will be taking several preventative medications such as Penicillin, an anti-fungal med, a preventative lung infection med, and a viral med. She cannot take any Tylenol or Ibuprofen. She may need to take a multivitamin.

Teresa indicated Sharon would need to receive platelets before they can place the Hickman catheter. Her last lab work showed her platelets at 22. They need to be at 50 before they can proceed with the procedure.

She needs to consume at least 1000 calories a day. If she needs to take a nap, they cannot be more than one hour. They continue to stress that she needs to stay active to build up her stamina.

Sharon and Bob met with Dr. Hogan. He spoke to them about the risks involved and proceeding forward. Dr. Hogan indicated that Sharon is more ready than some.

August 25, 2009 (continued)

The doctors were able to harvest 5,600,000 stem cells from Pat today. This is more than what will be needed for the transplant. Way to go Pat!!

As Sharon suspected, her blood counts were low. Therefore, she received two units of blood.

Tuesday, August 25, 2009

Harvesting Begins

Sharon had an appointment today with another cardiologist. She was awaiting the test results from yesterday. She felt really tired. Her levels could be low and causing her to be so tired. If they are low, this will mean another transfusion.

She said that she slept a lot yesterday. Steve has gotten a cold. He had to stay in the hotel room and rest while Pat was at the hospital.

Pat had to be at the hospital at 7 a.m. Bob went to pick her up and take her to her appointment. This allowed Sharon to sleep in. The harvesting process takes five hours. They take the blood out from one arm, extract the stem cells and return the blood into the other arm. They will count the number of stem cells extracted and determine how many more they will need.

While visting the Mayo Mansion, Sharon fell and twisted her ankle. They had to spend a couple of hours at the emergency room to have it checked out. Thankfully, it was just a sprain. The doctor put her in an aircast. She said it was better today.

She and Bob are getting their exercise. They walk to the Mayo, as often as they can, which is about four or five blocks from the Gift of Life House. Sharon tires easily and has to stop occasionally to catch her breath. She is following doctor's orders though. She is supposed to be as active as she can.

Her appetite has returned somewhat. It is, at least, better than it has been. She has been eating well. She said that foods were even sounding good to her again.

Sunday, August 23, 2009

A BIG Thank You!!!

Sharon wanted to send a BIG thank you to everyone for the cards she has been receiving. She appreciates them all very much.

Bob sent some new pictures. I have included a few in this post. They were taken at the Mayo Museum and Mansion. The first picture is of Sharon and Pat. The next picture is of Pat and Steve. After that, is Steve, Pat and Sharon. Then, Sharon and Pat again. The last ones are of the Mansion and grounds.

Sharon, Bob, Pat and Steve went to a festival that is held every week. There were arts, crafts and fresh vegetables. Sharon bought some of the vegetables which she said were very good.

The Shriner's were holding a Parade and Convention this weekend. When I spoke to Sharon on Friday, she mentioned they may attend.

Bob had a birthday this weekend. Happy Birthday!!

They have met some interesting people while they have been at the Gift of Life House. Sharon was telling me about a man and woman that arrived this past week for a lung transplant. Each of them were receiving one lung from a woman who had passed away.

Steve and Pat are very impressed with the Mayo. Steve said it is like being at a five star hotel. They have greeters to assist you when you arrive. They always have someone available to assist or direct you if needed. Everyone there treats the patients and families wonderfully.

As for the week ahead, Sharon has a blood test on Monday. Pat will continue with her shots to boost her stem cell growth. Tuesday, the harvesting will begin.

August 21, 2009

Pat continued with testing. She also received a shot to stimulate stem cell growth. Sharon indicated that Pat would receive these shots until they have harvested all of the stem cells required for the transplant. Harvesting is scheduled to begin on August 25.

Sharon received the results of her blood work. Teresa said her counts looked good. No transfusion!!

August 20, 2009

Pat began her appointments to ensure she is 100% healthy.

Sharon had her blood tested to check all of her levels.

August 19, 2009

Sharon and Bob met with the Department of Psychiatry and Psychology for coping therapy. She said this was very emotional. It was very hard to express how grateful she is for all of the support she is receiving from everyone.

Pat and Steve arrived this evening. The Gift of Life House did not have any rooms available. So, they are staying at a nearby Hampton Inn which has a shuttle that runs back and forth to the Mayo every thirty minutes.

August 17, 2009

Sharon had blood tests today.

Sunday, August 16, 2009

Sharon Says Hi

Last night and this morning, it was raining in Rochester. Sharon and Bob were going to an antiques flea market this afternoon provided the rain stopped.

She said she does not have many appointments this week. Tomorrow, she is scheduled for a blood test to see how much the transfusion helped. She meets with the psychologist on Wednesday.

Pat and her husband are scheduled to arrive late Wednesday evening. Pat also had to complete some additional blood tests this past week in preparation for the harvesting process.

Sharon had to find out from Pat if she has any type of allergies. Since Sharon will have Pat's immune system after the transplant, the doctors needed to be aware of any allergies she might have. Fortunately, Pat does not have any allergies. One less thing for Sharon to be concerned about.

The cardiologist told Sharon that her heart is in good shape to proceed as planned.

She also mentioned receiving cards from Operations, Renee, and Sally.

I have added a few pictures that Bob has taken since their arrival in Rochester. The first one was taken outside the Ronald McDonald House which is a couple of blocks away from the Gift of Life. The next one was inside their room. The others are views of different areas of the Gift of Life House.

Thursday, August 13, 2009

Today, Sharon had to have another bone marrow scan. She also had her blood counts checked. Her counts were low and she was scheduled for a transfusion. While waiting for the transfusion, someone came to take them back to the radiology department due to abnormal results in the scan. They found that blood was forming in her lungs and liver. In order to stop this from occurring in her lungs, she had to undergo a radiation treatment. Sharon said there have not been any side effects from the treatment. It was pretty much a non-event after the initial scare.

Bob explained that when your body does not produce bone marrow, it tries to produce the blood somewhere else. In Sharon's case, it was the lungs and liver. The radiation treatment was a one time thing. Dr. Hogan told her that she should be able to breathe a little easier after the treatment.

After the radiation treatment, Sharon went back to receive her transfusion.

Her day finally ended when they arrived at the transplant house at 10:00 p.m.

Wednesday, August 12, 2009

Sharon and Bob met with the Transplant Coordinator, Teresa Micerll. Sharon's form of leukemia is called myelodysplastic syndrome (MDS) and myeloproliferative disease (MPD). If all goes as planned, she will begin receiving chemotherapy on August 28 which will destroy the abnormal cells in Sharon's bone marrow. The doctor told her that she should not lose all of her hair. He also told her that she should not have the vomiting normally associated with chemo treatments. There will be some nausea which can be controlled by medication.

Then, the transfusion will take place on September 4.

During this process, she is to stay hydrated, consume lots of calories and stay as active as possible.

Tuesday, August 11, 2009

Day Two

Sharon had a full day today. She had several appointments. The Mayo Clinic is very thorough. She had to see a cardiologist, financial consultant, social worker and dermatologist. She also has a few appointments tomorrow. One of which will be with Dr. Hogan, the transplant doctor. At this time, she thinks, after tomorrow, the rest of the week will be free.

She finished up with her appointments early today. So, she and Bob went to check out the hotels in the area for when Pat and her husband arrive. They were not impressed with them. Provided there is a room available, they may be able to stay at the transplant house. Sharon put them on the waiting list.

The transplant house is located approximately four blocks from the Mayo. They are currently adding an additional 36 rooms to the house. The construction company building these rooms provided dinner for the patients staying at the transplant house tonight.

She has received cards from some of the folks at the Peachtree City branch and Deena Thompson. She's also received a care package from Terri, Lori, Robin, Vicki, Kelly, Joan and Eileen. (If I left anyone out of this group, I apologize.) The basket contained several items for her to open each day or as she was feeling up to it. She had only opened one today. However, she said Bob was wanting to open all of them at the same time.

Heather - She was planning on using the bath salts you had given her. Unfortunately, their room only has a shower stall. However, she looks forward to using them when she gets home.

Monday, August 10, 2009

Sharon's address and phone number:

Gift of Life Transplant House
705 Second Street SW
Room 60
Rochester, Minnesota 55902

Room Phone # 507-535-1008

Sunday, August 9, 2009

Sharon and Bob arrive in Rochester, Minnesota

Sunday - August 9

As you know by now, Sharon was diagnosed with leukemia earlier this year. Sharon's doctor, in Fayetteville, Dr. Ballard, felt that it would be best for her to been seen by the pioneers of research at the Mayo Clinic. After her first visit to the Mayo Clinic, her doctors prescribed a series of shots that she had to get every day for five days straight. She would take three weeks off and start again.

They also began testing for a donor. Thankfully, two of her three sisters were a match.

Sharon would see Dr. Ballard every week to have her blood tested. About every other week, her blood count would be so low that she would require a blood transfusion. A couple of times she was required to receive platelets as well.

The last week of June, 2009, Sharon and Bob went back to Rochester for a check-up. It was decided during this visit that it was time to proceed with the bone marrow/stem cell transplant. Sharon said they use the terms bone marrow and stem cell transplants interchangeably. Once all of the pre-authorization with the insurance was complete, Sharon was scheduled for the transplant process.

Which brings us to today....Sharon and Bob left for Minnesota on Saturday. On their way, they made a stop in St. Louis. They were going to visit the Gateway Arch and take a tour if Sharon was feeling up to it. Unfortunately, she was not. They went to visit one of Bob's friends instead. While they didn't get to tour the Arch, she said they did see it in passing. Sharon and Bob arrived in Rochester around 5:30 p.m. this evening.

Fortunately, the transplant house had a room available for them. They will not have to stay in a hotel. When I spoke to Sharon, they were trying to get settled in. She will find out tomorrow what her schedule will be like for the week. She felt like there may be some down time because some of the tests that would need to be performed have already been done.

Pat, her sister and donor, does not have to be in Rochester until August 20. Pat will also have to undergo some testing before the harvesting of stem cells can begin. Pat and her husband will be with Sharon and Bob for ten days.

I know everyone will be wanting to send their wishes to Sharon. I want to let everyone know while she is staying at the transplant house, she cannot receive flowers. If you would like to send encouragement to her, please do so by participating in Operation Continuous Encouragement card drive that Heather Underwood is organizing, sending her a card on your own or calling occasionally to say hello. I will post her address as soon as I receive it.

Thanks to all of you for your continued love, support, thoughts and prayers for Sharon. I know she and her family appreciates it very much.