May 2011

On Sharon's last visit to the Mayo, she found out she is in FULL REMISSION!!!!!!!!!

October - November - December 2010

In October, Sharon and Bob took a trip to see Barb and Sonny in Texas. They also visited with their niece in Louisiana.

Sharon had appointments at the Mayo in November. On the way to Rochester, she and Bob stopped in Hannibal, MO which is the home of Mark Twain.

At her appointments, the doctors followed up on the graft vs. host disease. Showing signs of progress and begins to decrease her prednisone intake. While Sharon continues to monitor her glucose as she is coming off the prednisone, she has been able to reduce the number of insulin shots she requires. She is now down to one shot a day. Hopefully, when she is able to discontinue the prednisone altogether, her glucose levels will stabilize and she will no longer require the injections.

After the appointments, they went to visit Ron and Bunny in Lake Preston, South Dakota. They visited the Black Hills and Mount Rushmore.

December brought bouts of nausea, vomiting and dizziness. Her medical team at the Mayo changed a couple of her meds and put her back on compazine to help control these symptoms.

Sharon and Bob will head back to Rochester in February.

I've attached pictures of their latest adventures.

July - August - September 2010

Time sure flies....Where do I begin....

July came and went without too many issues. Sharon continued working full time.

Sharon retired in August. She says it has been great. She no longer has to commit to going into work when she is not feeling well. As most of us know, come hell or high water, Sharon was always at work even on her worst days. Now, she is able to focus totally on her recovery.

September 4, Sharon celebrated her 1st transplant birthday. While you would think there would have been a party going on, there wasn't. It was Labor Day weekend and she'd sent Bob to the races at Atlanta Motor Speedway. She enjoyed a peaceful day doing what she wanted to do.

In Sharon's routine blood work with Dr. Bender, in Georgia, he noticed her liver enzymes were elevated. She went through a couple of tests here before they left for Minnesota. Once in Rochester, Dr. Hogan's team evaluated her further. They performed a liver biopsy to determine the cause of the elevation in her counts.

Graft vs. Host Disease has reared it's ugly head again which is not uncommon. It is the result of her donor stem cells still attacking certain parts of the host. First, it appeared as a skin rash again. She had this same rash after the transplant last year. While the rash is more of a nuisance than anything, the GVHD is attacking her liver this time. The doctor's have placed her on heavy doses of prednisone to eliminate the GVHD. As a result of taking the prednisone, this has caused her blood sugar to spike. Now, she is testing her sugar a couple of times a day and giving herself an insulin injection each day. She said her counts are really good in the morning and get higher in the evening. The doctors are optimistic that this is a temporary side effect of the medicine. Once she had been weaned off the prednisone, they believe her levels will return to normal.

The Mayo confirmed the presence of 100% donor cells. Great news!

Bob said the doctors in Georgia and Minnesota are on the same page which makes them feel confident moving forward.

Sharon and Bob are currently in Ohio visiting family. They were attending Bob's mini class reunion tonight and Sharon's class reunion is on Saturday. The plan is to head back to Georgia around the 17th. They will be here a couple of weeks before returning to Minnesota for another check up. While it is a long drive, they don't mind. After all, they are receiving the BEST treatment from the BEST doctors.

As always, thank you for your continued support and prayers. They are much appreciated.

JUNE 2010

Much progress has occurred in June. No more cold and allergy issues. Blood counts continue to improve along with Sharon’s endurance. Upon returning from Mayo appointments June 15 & 16 Sharon decided to increase her work hours from 4 to 8 to keep her mind in motion. Physical exertion still tires her quickly. Her Georgia Cardiologist explained this is common and exercise will gradually improve her stamina. Her next visit to Mayo will be her one year mark and the plan will be to perform a bone marrow biopsy to determine if the cancer has been eradicated. We extended our stay in Rochester to visit a few friends that remain at the Gift of Life Transplant House, toured St. Ansgar Iowa and a Wind Turbine in the middle of a beautiful Iowa corn/ethanol field. Bob (still unemployed) is investigating the possibilities of wind energy for Georgia. Too bad there is no money in farming. Corn doesn’t like red clay and pine tree forests. Sharon wants Bob to take cooking and home economic classes.

May 2010

Sharon's counts continue to make slight improvements.

May has been a trying month in other areas. Sharon started May by getting a cold followed by what is believed to be an allergy which she is still fighting. She has visited her family doctor twice for advice. Chest X-ray was normal. Astelin seems to have helped reduce coughing. The allergy theory may prove out since her sister's immune system is accustom to Ohio but Sharon lives in Georgia (Pollen central).

Nausea, fatigue, cough, and loss of appetite are current conditions. Mayo has been advised and we hope for more answers when we return in June.

Mother's Day came and went with the decision to wait to celebrate on Father's Day if her appetite returns.

APRIL 2010

Sharon started back to working half days April 5th. She told them she would know when the time was right and appreciates her employers support. She comes home quite tired but has the luxury of resting since her caregiver has retired.

We found a better location for her monthly Pentamidine treatment in Piedmont Hospital Atlanta. She continues to have her blood work done every 2 weeks at Piedmont Hospital Fayetteville, Ga. and fax’s results to Mayo Clinic Rochester, Mn. Her counts (CBC’s) continue to rise but still not perfect.

Sharon continues to gain weight and grow hair. Getting her hair trimmed and taking a scooter ride were milestones for April. Oh yeah and she has another Grand Dog “Buckeye” a Fiest/Jack Russell mix. We hope to harness some of the energy.

Thanks to all for your thoughts and prayers.

God is good.

1st QUARTER 2010 UPDATE

We would like to bring everyone up-to-date on Sharon’s progress since we returned home from the Mayo Clinic in December. As most of you know we lived at the Gift of Life Transplant House in Rochester, Mn. from August 9, 2009 thru December 18, 2009. We have since returned to the Mayo for Sharon’s one month follow up on January 14, 2010 and a recent 3 month follow up March 16, 2010. Last week Dr. Hogan expressed his pleasure with Sharon’s progress and has requested her next follow up be in June.
The progress over the last 3 months (counted in baby steps) has been positive. A few bouts with nausea and loss of appetite occurred but controlled. We attribute to adjustments in medications. As of this date her energy level has reached a point Sharon has planned to go back to work part time beginning April 5. Other noteworthy improvements are listed below:
---------------Dec. 2009 day+105 -----Mar. 2010 day +201 -----Target
Weight -------106 ---------------------122 -----------------------NOYB, fit her old wardrobe
Hemoglobin ---9.1 --------------------- 11.1 ----------------------13
White count ---3.4 ---------------------6.2 ------------------------5
Platelets ------29 ----------------------43 ------------------------60 to 150
Neutrophils ----2.54 -------------------4.2 -----------------------1.7 to 7
Hair length -----0 ----------------------1.5” ----------------------plans to keep it short/simple

The plan moving forward is to continue to have her blood work-up every 2 weeks at Piedmont Hospital in Fayetteville, Ga. and forward results to Dr. Hogan @ Mayo.
Many prayers have been answered throughout this “journey” and we can’t express enough our gratitude to family, friends old & new, and the utmost professional environment exhibited by everyone at the Mayo Clinic in Rochester. This facility as well as the Gift of Life are “best-in-class” by far!
God is good.

Personal Message from Sharon

It is good to be home! Keith had decorated the house and Brian made us Christmas dinner. Christmas was wonderful.

It is still one day at a time but I am feeling much better. There will be follow-up trips back to the Mayo. One is scheduled in January.

I want to apologize for not being able to write thank you notes for all the care packages that were sent. They were so much appreciated!!

Thank you to all my friends and family that sent cards, packages, emails, telephone calls and prayers. They made each day special and I was over-whelmed by the love and concern.

The greatest gift of all was my sister Pat’s stem cells. All three of my sisters did not hesitate to donate. There are no words that can ever express my thanks and gratitude. My Mom and Dad raised a very loving and caring family.

Thru this whole journey it has been such a surprise to me at the love and concern shown by so many friends and family. That is what got me thru each day and onto the next.

Thank you for following my journey. A special thank you to Tonya Price for the blog. It was priceless. My journey is not at an end but I do feel hope.

Love to all, Sharon

Georgia Bound

Sharon received wonderful news today! Dr. Hogan has released her. She and Bob are headed back to Georgia by way of Ohio. They are packed and ready to head south. They are ready for some warmer weather.

They are leaving Rochester on Friday. They are going to spend a couple of days with family in Ohio. They should arrive in Georgia Tuesday night just in time for Christmas with the boys. What a great gift for all of them.

Once she is home, she will be monitored by Dr. Ballard. She will, more than likely, have to make an occasional trip to back Rochester for check-ups/tests.

Dr. Hogan was very encouraged by her progress. He also told Sharon that initially he had not been optimistic about her outcome. She proved them all wrong. She is one tough cookie.

She had the Hickman catheter removed today. She was not placed under anesthesia during this procedure. She said they numbed the area before the removal process. She said she could feel them working a couple of times but it was not bad. They had to make an incision which has been sutured with one stitch. Bob will need to remove this in three or four days.

They have started saying their goodbyes to all of the wonderful people at the Mayo and GOL House.

Good-bye Rochester?

It looks like Sharon and Bob may be back in Georgia before Christmas!! We have our fingers crossed that all of her tests indicate she is well enough to be in the care of her doctors here.

While she hasn't seen Dr. Hogan yet, she's been told that he is encouraged by the results of her 100 day evaluation. She has a couple of more tests scheduled for this week. She is also scheduled to have her Hickman catheter removed on Wednesday. This is a good sign!

They did find some GVHD when they performed the endoscopy. In order to treat the GVHD, she is on a new medication.

She has been able to discontinue some of her other medications.

She has not had any nausea and her appetite has returned.

While she tires easily, she said she does feel like going out some now and doing a few things. She and Bob were meeting some friends from the GOL House for lunch today. The other day, she even assisted one of the other caregivers in making some oyster stew.

A group of Mennonites came by to give Sharon and Bob a box of cookies. Sharon has really enjoyed these. She even broke house rules by keeping them in her room.

This group has periodically been to the house and sang to the patients and caregivers. Sharon said they even visited and sang to her while she was in the hospital.

Bob has begun packing in anticipation of being released. Sharon said he thinks they will be out of there by Friday. Again, we are keeping our fingers crossed.

Approaching 100 Days

After suffering with nausea for a while now, the doctors performed an endoscopic procedure on Sharon last Friday. They wanted to get a good look at her stomach to see what was going on. They do not have any definitive results as of Wednesday but it does not appear to be anything serious. The good news is that Sharon has not felt nauseous for a few days now.

Sharon's 100th day since the transplant will be on Sunday, December 13. On Wednesday, she began her 100 day evaluation tests. She had a bone marrow biopsy and pulmonary function test. Yesterday, she had a chest x-ray and a pentamidine treatment. Today, she is having some blood tests, a bone mineral density test and has a meeting with the BMT Pharmacy.

She sounds great and feels a little better each day. She is eating better. Hopefully, these tests will show that she is improving enough to be able to come home.

Dr. Hogan is attending a Hematologist convention in New Orleans. They are awaiting his return to receive the results from these tests.

There was a blizzard in Rochester Tuesday night. Bob said they received 10 1/2 inches of snow. The temperature is in the single digits with a below zero wind chill factor.

Sharon and Bob had a big Thanksgiving lunch. There were many volunteers that prepared and served the residents at GOL.

Sharon said she felt really good today. It has been four or five days since she has required a red blood transfusion. She hasn't had to receive platelets in a while either.

She is having to see the doctors less and less. She's had four days of no doctors. She has an appointment at 6:40 a.m. tomorrow to have her blood tested. Theresa told Sharon the other day that she should be dancing on tables her counts were so good.

There was a brief worry that Sharon may be getting the graft vs. host disease again. Fortunately, what Sharon was seeing was her body's reaction to a lack of platelets. She said it created what appeared to be small blood blisters on her body. The graft vs. host disease rash she had before looked similar in appearance. A platelet transfusion cleared this up.

She is getting stronger each day. She does not have to use the walker or wheelchair any longer. She does get short of breath on occasion. When this happens, she rests until she feels she can continue. Her appetite and taste for food is continuing to improve as well.

Sharon said it is very cold and felt like it was going to snow.

She and Bob hope to find out soon when they will be released to Dr. Ballard's care here in Georgia. We all hope that it will be sooner than later. We miss you guys down here!

E-Mail Address Correction

Bob and Sharon's correct e-mail address is bboldt2009@gmail.com.

I apologize there was not a post last week. There was not anything new to report which is a good thing. No news is good news.

Sharon is doing very well. She has completed her time with Unit 94 and has moved on to the BMT Unit. She has fewer doctors appointments. Bob took Sharon's picture with a couple of them since they would not be seeing them as often. I have included them in this post.

She is having a few dizzy spells. She believes it is from the different medications taking a toll on her blood pressure. She has an appointment with the cardiologist tomorrow. Hopefully, he will be able to adjust her meds to eliminate these spells. She will also have her blood tested tomorrow. It has not been tested since Thursday and she has not required any red blood or platelets.

She said she has been doing a lot of reading and napping. She still hasn't been venturing out much.

Sharon sends many thanks to everyone for her cards and care packages she has been receiving. She and Bob appreciate it very much.

Should you need to reach Sharon or Bob by e-mail, they have a new e-mail address. It is bboldt@gmail.com. Please discontinue using naugabob@gmail.com.

Sharon has graduated to the next level which means she does not have to see the doctors as often. She is hoping to get another negative test this week for the CMV infection. She received one last week. If she is negative this week, she does not have to go to the hospital for IV medications. She will be able to take the medication in pill form.

Bob said this past week has been encouraging even though her counts have dropped some due to the CMV medication. She did need one unit of red blood and two units of platelets this past week. This is great news. She had been receiving platelets on a daily basis.

Sharon and Bob are meeting with Dr. Hogan and the entire team this week.

GOL House had a Halloween party. While many masks were worn, Bob said they were mainly the surgical variety due to the low immune systems of the patients. Sharon and Bob wore "costumes" that Brian and Keith brought them back from Disney World.

During Keith's visit, there was a woman at GOL frying SPAM. Keith does not do SPAM. In retaliation, he began cooking lutefisk. Can you image the smell? Lutefisk is a Scandinavian delicacy which literally means cod soaked in plutonium. While it is not truly soaked in plutonium, it is soaked in lye. If you don't know what lye is, it is an industrial chemical used as a drain cleaner. Anyone up for some SPAM and Lutefisk? I believe I will pass. Bob loved both.

Mary Stockdale, their favorite nurse, surprised Keith with a card and birthday cake. Keith's wish was to see snow while he was visiting. As you know from a previous post, his wish was granted. Mary was not happy about this. She cussed Keith all the while she was stuck driving in the blizzard. Bob and Sharon hadn't seen Mary for a couple of days. They learned that she lost a friend to breast cancer. Sharon and Bob send their love to Mary, her family and loved ones.

Barb, Bob's sister, and her husband surprised Bob and Sharon when they went to pay their rent for November. They had paid it in full. Barb snuck a note to Sister Jane Francis thanking her for what she and all of the staff at GOL do for all of those in need.

Sharon and Bob have been enjoying Keith's visit. They had a lot of snow on Keith's 40th birthday on October 23. Sharon said the snowflakes were big and very pretty. However, they are not liking the freezing temperatures that go along with the snow. Bob and Keith have gone to dinner a few times. Sharon has opted not go go outside the transplant house with the exception of her doctors appointments. She does not want to expose herself to any germs that could impede her recovery.

Sharon is still receiving platelets on a daily basis. Her red blood count has stabilized and she has not required any transfusions. She said her legs still ache and are real weak. She is doing her exercises as instructed.

She has gotten another infection. This one is called Cytomegalovirus. Sharon said that it was possibly a virus that had been dormant in her body for a while and was reactivated due to her weakened immune system. She goes to the hospital at 8 a.m. and 8 p.m. to receive IV medications to combat this illness. The doctors have said it could take up to six weeks before her body is cleared of the infection.

She got her new glasses last week. She said she has been reading again.

Sharon has a full day of appointment tomorrow. One of which will be with her primary Hematologist, Dr. Hogan.

The Rochester International Technical School prepared dinner for the GOL House over the weekend. Sharon said there were a lot of Indian dishes. She was able to taste the chicken she was eating. Although she still says she doesn't have much of an appetite, it sounds like her taste is finally coming back.

Sharon wants to send a great BIG thank you to everyone again. She and Bob appreciate all of the cards, gifts, thoughts and prayers they are receiving.

Sharon is taking baby steps. Things are improving weekly. All of her blood counts are improving as well. She is still receiving platelets everyday. There was an exception where her platelet count was stable enough where she did not have to receive platelets. This was only for one day. The next morning, she had a nosebleed which meant she needed platelets. She has not received any red blood cells in several days.

Sharon is at +45 days today. She is required to be at the Mayo until +100 days past her "birthday". They are hoping to be home before Christmas.

She still has no appetite or taste. All of her mouth sores have completely healed. She is still enjoying mandarin oranges, pineapple and peaches. She also supplements her meals with Ensure or Carnation breakfast drinks. Bob is back to doing the cooking. It may be a good thing Sharon can't taste anything.

The GVHD (graft vs. host disease) is almost gone. The prednisone and cream have done their job. Sharon said her skin was sloughing off which is part of the healing process. She is receiving monthly breathing treatments. These seem to be helping with her shortness of breath. We had a rather lengthy conversation on Saturday and she did not seem to be having any trouble talking.

Since she cannot wear her contact, the doctor recommended that she get a new pair of bi-focal glasses. She should have received these today. Now, she will be able to read better.

With the aid of her walker, Sharon is getting her exercise. She is even able to walk short distances without the walker. Her legs were aching when I spoke to her.

Sharon received her flu shot on Saturday. Once the H1N1 vaccine has been received, she will be required to have this one as well. Anyone that comes to visit Sharon must be vaccinated. Bob said this is a very big issue at the Mayo. One of Sharon's doctors, Dr. Hogan, caught the flu from his kids. He has not been allowed at the hospital. She's been in the care of Dr. Litzow in his absence. I have attached a picture of Sharon and Dr. Litzow. There is also a picture of Sharon with her nurse, Mary.

Tom and Kim bot a buddy pass for Keith to visit. Keith will be arriving in Minneapolis on Wednesday. He plans on staying with his mom and dad for a week.

Mouse and Mom were supposed to arrive on Monday. However, Mouse's husband had a cold and Mouse had a scratchy throat. The trip was postponed as to not expose Sharon to any germs. Sorry....Mouse. I know how much you wanted to see Sharon.

The new addition to the Gift of Life House had an Open House on Saturday. I have attached pictures that Bob sent. Sharon did not attend. She did not want to fool with all of the precautions she must take when going outside of the GOL house. I am providing comparison photos from the room they are in now to the new rooms.

Sharon was released from the hospital on October 8. She has to be seen daily in the outpatient area until they feel her care can be transferred back to her primary Hematologist, Dr. Hogan.

Sharon's immune system is now 100% the same as Pat's! While this is great, Sharon has developed graft versus host disease. As a result, she has a rash on her back, legs and arms. They are currently treating this with a medicated cream and prednisone. Bob said it is possibly in her "gut" as well.

Her hemoglobin has been relatively stable. Her last transfusion was on October 5. Although, she continues to require daily platelet transfusions.

She continues to have trouble with nausea. She doesn't have a good sense of taste right now. She is getting better though. The foods most appealing to her at this time are peaches, pineapple and especially mandarin oranges.

She is still having trouble with shortness of breath. This seemed to be better last night when I spoke to her. She sounded a little stronger and not as short of breath as she was last week. She can't talk to anyone for an extended period. She begins coughing and having trouble breathing.

She has been able to get some exercise in with the aid of a walker.

Bob had to go shopping for winter attire. They awoke to snow yesterday morning as you will see in the attached pictures.

Sharon and Bob attended a dinner at the Gift of Life House last night sponsored by the hematology nurses.

Bob said even though they are still in the hospital, things are getting better each day. They have been told numerous time how important exercising and eating are and how they will make things better. Even though they remind Sharon, the ball is in her court.

Yesterday, Bob said Sharon was very lethargic. She did not want to do anything but sleep. One of her nurses,Anna Lisa, is a bulldog. She was not having any part of Sharon just lying around. She pushed for Sharon to get up and move around a bit.

I spoke to Sharon briefly. She said her breathing is getting better. However, she still tires out very easily. She has given her okay for the pictures to be posted. She is on a room assist diet where the nurses order food for her until she feels like ordering for herself. While she is still not eating very much, she is trying. She continues to have trouble with nausea and keeping the food down.

She has not had to receive any red blood cells in a few days. Her counts had actually risen slightly until today. They dropped two-tenths of a point from the previous day. Her neutraphils have doubled. They are now .83.

Bob sent several pictures from Barb's visit. He also sent a picture of Marry, the Chaplin. This is the second picture. She is the one I mentioned in the last post. She is seven years into her recovery from her transplant. There's a couple of Sharon's nurses as well.

Sunday, September 27, 2009

When I spoke to Bob today, Sharon was watching the Food Network. She was hoping to see something that would entice her to eat. Her mouth sores are pretty much gone. The main problem with her eating is the nausea. She has been unable to keep anything down until today.

Before Sharon and Bob left for Rochester, they had to watch a video on the transplant process. Mary, one of the ladies that appeared in the video, happens to be a Chaplin at the hospital. She has been by visiting Sharon and sharing her experiences through the transplant process. She explained to Sharon that peaches were the first food that she was able to eat. After Mary's visit today, Sharon looked at the menu and decided that pears sounded good to her. She was able to eat two of the four that were delivered. At the time I spoke to Bob, Sharon had managed to keep them down. Despite her not being able to physically eat much, Sharon is gaining weight which is a good thing.

When Sharon's hair starting thinning, they decided to go ahead and cut all of it. Bob had the honors of giving Sharon her buzz cut. He said she is about two inches shorter now. Bob went to Erickson's to get Sharon a scarf. When he explained Sharon's situation, they provided a scarf made by a volunteer at no charge to Bob. Mousy and Sharon's mom also ordered her a couple of scarves.

Bob's sister, Barb, arrived on Saturday. She brought a couple of scarves for Sharon which happened to belong to Bob and Barb's mother.

Another doctor or nurse mentioned to Bob that the neutrophils are also important to track. The neutrophils are baby white blood cells. This number indicates engraphment is occurring.

At the end of our conversation, Bob and Sharon were taking a trip down to the third floor which houses the maternity ward. They were hoping to find a grandchild they could adopt.

Friday, September 25, 2009

Bob said things are slowly getting better. This was the best day she's had since the last report. Sharon was able to take a shower first thing this morning.

The pulmonary doctor was in about 9:30 a.m. to check on her breathing. Fluids had been building in Sharon's lungs since she was admitted into the hospital on September 8. They believe this build up occurred due to the number of IV fluids she has been receiving. Subsequently, she had to have a thoracentesis, an aspiration of fluids, performed on her left lung on Wednesday and her right lung on Thursday. They were able to remove .9 liters from her left lung and .5 liters from her right lung. Sharon began taking more of her medications in pill form vs. IV which helps reduce the fluid build up.

Sharon's team of doctors arrived around 11:00 a.m. and their consensus is that the fluid build up was caused by Sharon's rapid heart rate and atrial flutter - a condition she's had for years. Therefore, the heart muscle could not keep up with all of the liquid intake and had somewhat weakened. Normal is 50% and Sharon is now back to the 40% range after a change in her medications.

The cardiologist came in around 11:30 a.m. to check on the new medications he had prescribed the day before to counteract her rapid heart rate. All appears to be much better.

Sharon had to receive platelets and red blood today. Thursday her numbers were - Hgb: 9.6, WBC: .9, Plts: 10, and Nutrafils: .410. Today her numbers were - Hgb: 8.3, WBC: 1.0, Plts: 4, Nutrafils: .400.

Next goals are to transition from IV medications to pill form and to begin eating to eliminate the need from the liquid CPN's plus lipids. Then, back to the Gift of Life House when successful.

I was unable to reach Bob and Sharon by phone this weekend. The following information is based on a couple of e-mails received from Bob.

The first e-mail said that all is going as well as expected during these low days. The doctors and nurses are continuing to monitor Sharon's progress. She was able to take a shower on Friday. Her hair has begun to thin. She is still having trouble with the mouth sores, a rapid heart rate and having shortness of breath. They are hoping for the engraphment to occur soon.

In the second e-mail, Bob says that he believes Sharon is beginning to turn that first corner which is bigger than Bark Inn Curve. There are still a lot of bumps in the road ahead where numerous infections or complications can occur.

Sharon had to receive one unit of blood on Friday. When her hemoglobin drops below 8.0, she requires a transfusion. The hemoglobin is currently 9.3 with a target of 13.0. Her white blood count has been around .1 or .2 for the last two weeks. As of this e-mail, her white blood count was .4 with a target of 5.0. When they begin seeing the white blood count rise, the engraphment is occurring and Pat's immune system will begin to take over. Her platelets are currently 16 with a target of 150. When they drop less than 20, a transfusion is needed.

Her hair loss is very evident now. Sharon has asked Bob to buy her a scarf. He said there is a nice place on the subway level where he can purchase one for her.

The goals established for Sharon at this point are to keep active, try to eat, walk, keep active, exercise the lungs, and keep active.

Bob's sister, Barb, is going to be visiting for a week beginning Saturday. Keith, Sharon and Bob's son, will be visiting at the end of October.

Water Tower

As promised........here are the pictures of the water tower. If you look closely, you might be able to see the worms Bob was talking about.

As of 7:45 p.m. EST, Sharon was still in the hospital. Bob assures everyone that she is receiving the best of care and monitoring. He said Sharon did not sleep much the two previous nights. They have her on a diuretic which means she is spending a lot of time in the bathroom. She is receiving all of her medications and now, what they call food (CPN-Protein and Lipids or fat), through her Hickman catheter or other ports that were recently implanted. Her main discomforts at this time are the mouth sores and shortness of breath.

When the doctors made their rounds this morning, they explained that these are the lowest days in her journey. Everything will improve once her blood counts begin to recover. Bob is calling this the "hurry up Pat" days. As with many procedures, each patient is different. Having said that, they expect to see positive signs in two to four days which is wonderful news!!

Sharon had to receive two units of blood and one unit of platelets this morning.

When I spoke to Bob this evening, they were unsure how much longer she will remain in the hospital. Again, this is something that varies from one patient to the next. Among other factors, when she can swallow and eat normally to maintain her minimum caloric intake, she will be closer to being able to return to the Gift of Life House. While Sharon did not feel like talking due to the mouth sores, I could hear her in the background correcting Bob on some of the information he was giving me.

In between taking care of Sharon and working, Bob has been perfecting his house-husband skills. He is messing up all of the laundry and doing most of the cooking.

The newest picture added is of Sister Colleen. She works at the Gift of Life House. Bob wants her to move to Georgia when they are ready to come home.

Pat is supposed to be sending me a picture of the water tower in Rochester that Steve took while they were there for the harvesting procedure. Bob insists that this picture needs to be on the blog. He said the city is planning on tearing it down because it has WORMS! Bob said that it is classic like the Walleye falling from the sky on New Year's Eve in Port Clinton, Ohio and the tractor parades in Oak Harbor, Ohio. Iowa would be proud. I will post the picture as soon as I receive it.

Sharon was admitted to the hospital on September 8 to receive medication and treatment to control nausea, pain, etc.

She received her last round of chemo yesterday afternoon for graft vs. host disease prevention.

The side effects of the chemo have started subsiding. There has not been any hair loss yet. However, she does have mouth sores which makes eating difficult. She may have to be fed through a tube until these have healed.

Her doctors have told them that she needs to endure the next seven unpleasant days.

Chemo side effects can be expected three to seven days after the first treatment. Sharon started her treatments on August 29. The side effects began on September 6.

Signs of engraftment should be seen seventeen to twenty one days after the infusion.

Infusion is Complete

There was a slight delay in Sharon's procedure due to her shallow and rapid breathing which was monitored and controlled.

Pat's stem cells were thawed, placed into syringes, and infused through Sharon's catheter one by one.....all 5,200,000 of them. The actual transplant was from 1:53 p.m. to 2:22 p.m.

Sharon had to receive plenty of hydration to make sure her kidneys were flushed. She also had to receive two units of platelets.

All in all, everything went well.

Bob ordered Sharon some cream of mushroom soup and a vanilla milkshake. He said that if she didn't finish it that he planned to do a Eugene. This is some humor for the family.

Other info for Sharon's family:

• Sharon spilled Blueberry Parfait on her blouse trying to imitate her mother.
• They did not need to send Mousy to any town hall meetings. The Mayo is just too organized and no one needs to complain.
• Barb.....well, that was the name of the nurse that injected Pat's stem cells.

Bob sent a few pictures that I have added A couple are of Sharon and Pat during the harvesting process. Another is of Sharon and Pat with statues of the Mayo brothers. One is of the transplant/infusion process; one is a birthday greeting; one is of wind generators....apparently, there's a place that has over four hundred of these; and the last one is an interesting speed limit sign they came across.

In the days and weeks to come, Sharon will continue to have her blood tested. If necessary, she will receive blood and platelet transfusions.

Countdown to Infusion

A business associate of Bob's stopped by to see them last night. They went to dinner with him. Sharon said she didn't have much of an appetite.

So much for today being a rest day for Sharon. She had to report to the hospital for blood work and a test this morning. She had taken a medication that she was not supposed to take before she went. They were unable to do the test as planned. Her platelets were still low. Therefore, she received a unit of platelets. She was to go back to the hospital at 7:30 p.m. to have the test done that they were unable to do this morning.

Sharon and Bob have to be at the hospital at 6:00 a.m. This is when they will begin the infusion process. Sharon indicated that this could be an all day procedure. She is anticipating that she will not feel real well which is to be expected. Another transplant recipient, at the Gift of Life House, has been feeling pretty run down. She received her transplant two days ago.

Tomorrow (September 4) is a big day. It is Sharon's new birthday. Please keep Sharon, Bob and family in your thoughts and prayers.

If you would like to learn more about the procedure, below is a link to some information provided by the Mayo Clinic.

http://www.mayoclinic.com/health/stem-cell-transplant/MY00089

E-mail from Bob

Chemo must be doing its thing. Sharon had 2 units of blood and 1 unit of platelets today (September 1). Sharon's nurse said people who have transplants consider that day their new birth date. Sharon's new birthday is 9/4. How ironic......Her old birth date was 4/9.

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.

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.

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.

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.

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.

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

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.