Sincere Appreciation

The services that were held for Nonnie were absolutely beautiful! Our family would like to thank everyone who helped make the the day so special. Not a single detail was overlooked, and it could not have been possible without the help of our special friends and loved ones.

There are so many aspects, including the program, flowers, pictures, music, food, set-up and tear-down that we are very grateful for. Each of the speakers did an amazing job of sharing their memories with all of us in attendance. A special thanks to The Grove Community Church and Pastor Jim Gilbreth for providing the facility and honoring Nonnie's life.

Whoever said the days and weeks following the loss of a loved one would not be easy, was absolutely correct! We have been very blessed to have so many friends and family offer their support through cards, letters, flowers and prayers that will help us to gain strength as time moves forward.

In His Hands

After a courageous and brave 15 month battle, our loving Nonnie has gone home to be with the Lord. There are few words to describe the pain and sadness our family feels at this time, but we take comfort in knowing that she is in Heaven with our Lord and Savior, Jesus Christ. Nonnie fought with such determination and grace and has been a blessing to so many people.

Nonnie always referred to our family as "Our little family". Although "Our little family" is a little smaller, we are blessed to have been able to make so many memories that will last a lifetime! She was at peace and looking forward to being reunited with Mike, Shannon and Brennen in Heaven.

Nonnie made an impact not only to those who personally knew her, but also to those who followed her battle through mutual friends and the kind and loving hospital staff at UCLA. The staff that met her could not help making a loving connection with Nonnie that people in that profession are warned not to make. I heard that the staff would actually argue who was going to take care of Nonnie on their assigned shift. She was always the favorite patient and never argued or complained, not even once!

There are so many memories that we all have of Nonnie and we invite you all to join our family on June 18, 2010 at 10:30 A.M to celebrate her life. The services will be held at The Grove Community Church located at 19900 Grove Community Drive Riverside, CA 92508. In lieu of flowers or gifts, we ask that all donations be made to the Leukemia and Lymphoma Society.

Surrounded By Love

On Thursday evening, Papa brought Nonnie home to be with family in the comfort of her own home. She was so happy to be home and loved seeing all of the beautiful changes around the house. We were able to put her in a wheelchair and show her the new landscaping, the kids rooms and the gazebo Papa built especially for her.

Nonnie was feeling quite well all day on Friday and was able to spend time visiting with family and friends. The rest of our Oregon family made it down on Friday night and her sister Carol and Tony arrived yesterday afternoon. Several families have been very generous and have provided wonderful fruit bouquets and delicious meals for us.

There have been so many heart-touching moments and conversations over the last couple of days. Nonnie had a talk with all of the grandkids and she had them promise her to be strong and to take care of Papa. She is surrounded by the love of her family and we are keeping her comfortable until she goes to be with the Lord.

Praying For A Miracle

The last couple of days have been difficult on many levels. Each day presents itself differently than the one before. With each victory, there seems to be another upsetting challenge to face. The recent neuropathy has been treated by injecting chemotherapy into Nonnie's spine. These treatments appear to make her more comfortable, although she still has the weakness and loss of sensation to her extremities.

This morning, Nonnie had a blood test and the results confirmed that she is not in remission. Despite all of the treatments she has had, the leukemia has not responded according to plan. Although Nonnie will get another chemotherapy treatment in her spine tomorrow, this does not affect her leukemia because the spine is a closed system. It only helps with the neurological symptoms.

Lisa and I went to UCLA this afternoon after the doctors had a meeting with Nonnie and Papa. Nonnie has been battling this horrible disease for 15 months and her body can no longer sustain further treatments. Together, we cried and talked about how to deal with this horrible situation. On Thursday, Nonnie will be discharged from UCLA and sent home with hospice care.

Our family has not given up on a miracle to happen. Nonnie's faith is stronger than ever, and she has put everything in God's hands. She actually had a pretty good day today, and she wants to go home to be with family while she is still feeling this way. The most important thing for us to remember, is that He is in control!

Wrong Turn

After several days of making improvements, Nonnie has unfortunately taken a wrong turn. The last two days have been a struggle for her and a source of frustration for the doctors. She has developed a case of neuropathy, which causes her tingling and numbness to her feet and hands. The left side of her body is weaker than the right. The doctors did a CT and MRI to see if there was a reason other than the neuropathy causing the weakness. The CT came back negative and the MRI results are not available at this time. In addition, she has been unable to eat because of her throat pain. As a result of these issues, Nonnie will not be able to come home this weekend as expected.

Tentative Game Plan

The forward progress is continuing and there is a tentative plan in place that will take effect this weekend. Nonnie and Papa have been faithful about getting their walks in and she is gaining strength. Based on her current status, barring any setbacks, the doctors are considering sending her home as early as this weekend for a break. Her job there will be to continue getting stronger by eating and walking. She will then return to UCLA after one week and repeat this last treatment.

A request was made by the doctors to hold off on making any more direct donations at this time. Of course, there is always a demand for blood products for other people with illnesses. After all, Nonnie has received these gifts from countless donors over the last year! Once Nonnie returns for the next treatment, she will need more donations and I will let everyone know on the blog.

What Is Pain?

The battle continues, but Nonnie is still being a warrior! Each day is still mainly focused on her counts, but there has been some great progress this past week. Her biggest physical problem is the mucusitis, which causes severe mucus build-up in the mouth. In turn, this causes her to cough which causes pain in her sore ridden throat.

We are relieved that the bleeding has resolved itself and the doctors have changed the platelet protocol. The magic number when Nonnie will receive platelets is 20,000 instead of 50,000. This will be very helpful because when she gets platelets, she also takes Benadryl. When she was getting platelets up to 3 times a day, she was sleeping most of the day. Who would want to get out of bed and go for a walk if you are sleepy all the time?

Since the change over the weekend, Papa has gotten her out of bed and they started a walking routine. Nonnie had to start walking back and forth in her room since she had not walked in over a month. Yesterday, they graduated to the halls on her floor and put down a few laps! When I spoke with Papa this morning, he told me Nonnie's legs were sore from the workout. I reminded him of an old saying......"Pain is weakness leaving the body". They both liked that, and promised another walk today.

Making Progress

Since the weekend, there have been significant improvements in Nonnie's recovery. She is finally able to get more calories down by drinking Odwalla vanilla protein shakes. She continues to receive platelets on a daily basis in order to maintain the counts at or near 50,000. Even though she is still having fevers, her counts are not dropping to an unsafe level.

As of this afternoon, we learned that both her white and red blood counts are on the rise! The doctors are encouraged by this news, which indicates that her bone marrow is starting to produce again. There are no "blasts" visible in the blood draw and a bone marrow biopsy will be taken to confirm the effectiveness of this last treatment.

If things continue to go according to plan, the doctors told us today that Nonnie will undergo the same treatment again starting in two weeks. After that, they would then go into the "transplant" mode which includes typing and finding a donor for a bone marrow transplant.

Emergency Room Visit (s)

Last Wednesday, Papa's sister Kathy DeGroot came down from Roseburg as the newest team member to help out. Papa took her around Riverside, showing her where the kids school is and where the sports fields are located. Papa spend the night with Nonnie on Thursday night and went home for the weekend games on Friday. Kathy stayed at UCLA with Nonnie until Sunday afternoon and they spent a lot of time praying and reading the Bible.

There is no new information to report at the hospital, except for the normal "waiting for the counts" routine. The counts continue to fluctuate, but it sounds like her hemoglobin is higher and has maintained over the last day without any blood. Last week, Nonnie had a flood of new platelet donors including Derek, Tammy and Shane McGowan, Aunt Carol and I by Thursday. Jennifer and my step mom Linda were due over the weekend and early this week. I have not got the update on the effectiveness of those platelets yet.

Sports update: Sydnee and I went to an All Star tournament for softball in Oceanside this weekend and her team took second place! Kylie had a softball game in which she plays catcher. She caught a pitch and the batter swung late and hit her gloved hand. Papa took her to the emergency room and it looks like she broke her left hand. Follow-up this week. Blaine played soccer and his team won with the help of the goal he shot. Dustin's baseball team won their game yesterday to stay in the playoffs. Today, Dustin had a practice for another team he is playing on for a Memorial Day tournament. He was a base runner on second base and the pitcher tried to "pick" him off and the ball hit him in the face. Diagnosis.........broken nose!

Question of the day......"How much more can a family endure?" Below is the newest contact information for Nonnie.

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6155

Los Angeles, CA 90095

Misinformation

The last several days have been challenging for Nonnie. She continues to have bleeding and bruising because of her low platelet levels. Physically, she feels very weak and tired from all of the medications. Dr. Paquette told her today that the only thing she needs to worry about is eating and trying to get some exercise. Unfortunately, she is having a difficult time doing both.

The information I gave regarding her starting a clinical trial drug this week was incorrect. That would only be a "last resort" treatment and any clinical trial therapy would eliminate Nonnie from a transplant in the future. Last night, she started a chemotherapy treatment called Decitabine. The medication is given every 8 hours for 3 days, each treatment lasting 3 hours. The results this morning already show improvement in the "blasts" meaning that it appears to be working.

Check This Out

As soon as Nonnie arrived at UCLA yesterday afternoon, the staff began the normal routine of taking her blood counts and vital signs. Nonnie has had a fever for most of the weekend, and she is taking medications including antibiotics, antifungal, diuretecs, Tylenol and platlelets. She is set to start a clinincal trial tomoorw of a new chemotherapy. NOnnie told me tonight that she is glad her sister Carol is with her and that she is beign a great nurse!

I need to share an e-mail that I received from Mary Carpenter.....yes, I did get permission:

Hi Lisa and Jeff: Just wanted to let you know that Linda was in good spirtits when she left Riverside this morning and ready to do the hard work it is going to take to get well. Linda had a nurse today who was chatting with her when she was bathing her and asked if she was Catholic. Linda said no, but said she was a Christian. Anyway, just when the ambulance people came to get her, the nurse came back and said she wanted to have moment alone with her patient (and me). She closed the door and came in, and told her story about how she was at religious pageant at a church, and she looked up and there was a statue of Christ on the cross.

As she looked at it, two beams of light radiated from His hands down onto her in audience. She was awestruck and told her sister about it the next day. Her sister asked, "What are you going to do with that power?" She decided to use it on her patients and asked if she could pray for Linda. Linda said yes. She had written down a prayer and read it. It was very moving, and emphasized for God to give Linda the power to be strong through her treatment and to heal her. Linda touched and thanked her. Just wanted to share this with you.

Love ya,

Mary

On The Road Again

Mary Carpenter went down to Riverside Community Hospital to see Nonnie off this morning. She is en route to UCLA as I write this. Her sister Carol landed at LAX this morning and will there waiting for her arrival by ambulance. Talk about loving friends and family! There will likely be many tests conducted this afternoon and I will post information later this evening. We are so happy she was able to get a bed and get back to where she belongs.

Small Delay

I am afraid that all of these changes in plans during the week are going to make you all stop trusting what is written. Here is the deal as of 9:30 Friday night.....Nonnie was supposed to have been back at UCLA last night or this morning. That transfer did not happen as planned for reasons unrelated to her condition. That being said, she should be on the road via ambulance by 9:00 A.M. tomorrow morning to UCLA.

Her hemoglobin levels are still a little low and they expect to get blood tonight. Her platelet levels are up around 72,000 after the directed platelets. Nonnie's sister Carol is flying in from Portland in the morning to stay with her for a few days. The staff at UCLA are expecting Nonnie and will take great care of her!

The Plan

Today was a much better day than yesterday. The blood transfusions from last night lasted into the morning, and Nonnie had a reaction to the last of 4 units of blood. She had a fever that did not break until the afternoon. They had to wait to give the platelets because the fever would have "eaten" them up. She had received the last bag of directed platelets by 6:30 tonight.

Nonnie got a really sweet roommate named Every last night. She was an older woman who spent most of the night praying with Nonnie! Papa and Lisa spent the day at RCH and they had a meeting with Dr. Gill regarding "the plan". During the meeting, there were several groups of friends that stopped by for a visit.

At this point, Nonnie is considered stable, even though her hemoglobin levels are low. The platelets counts from last night went from 65,000 to 20,000 which is considered "refracted" (did not hold). We have not heard the latest platelet count this evening. Once a bed is available, Nonnie will be transported to UCLA either tonight or in the morning. She will remain there for an unknown period of time until she gets strong again.

Changing The Game Plan

After a long morning of waiting for the doctors orders, Nonnie finally got admitted into Riverside Community Hospital. As expected, her counts were very low and the first order was to get her some platelets to stop the bleeding. A random donor from the blood bank boosted her from 9,000 to 65,000! This was critical so she could hold the blood transfusions that she needed to get her hemoglobin level up.

She will be getting 4 units of blood this evening followed by 3 units of directed platelets from Jennifer and I. They will check her levels in the morning and then formulate a plan to see where she needs to be.

The summons to get people rallied up to donate platelets has overwhelmed the staff at both the San Bernardino and Riverside blood banks. At this point, we do not know where Nonnie will be beyond tomorrow and any platelets donated may not be used for her. On that note.....our friend Blossom went to donate today, but her blood type was not compatible with Nonnie's. She elected to donate anyways, and her platelets will go into "replenishment" which is the blood bank. That is always a good option if you are able to donate.

I know this is confusing to keep up with all of this, but things just keep changing so quickly. Please do not attempt to make an on-line appointment because their system is overwhelmed and all appointments need to be made with a live person.

Night To Forget

Nonnie woke up in the night feeling worse than she has ever felt since starting her battle. She was taken to Riverside Community Hospital early this morning because she was having significant bleeding. It appears that the platelet transfusion from yesterday was refracted by her body.

Her counts have continued to drop which explains the bleeding. As of 11:00 a.m. she was with Papa and Lisa waiting for her blood results. The hospital staff are irradiating the blood product for transfusion as soon as it is ready. The initial plan seems to be to get stabilized at Riverside and hopefully receive the "directed" platelets from Jennifer (who has been anonymously giving) from yesterday, and then get mine before getting transferred back to UCLA.

There are no needs at time, except for this simple request.........please say a little prayer for our Nonnie.

Overwhelming Response

Remember the movie "Field of Dreams" when Kevin Costner said, "If you build it, they will come?" Well, I asked people to "come" (donate) and they did! I went out to San Bernardino this morning and donated platelets. When I was there, the switchboard received in excess of 10 calls from potential donors for Nonnie. I overheard them say that they had to forward all calls to the Riverside office.

By days end, there were 5 units of platelets collected for Nonnie. As a refresher, it takes 3 days to process the platelets prior to transfusion. The platelets only have a 5 day shelf life. That means that the direct donor recipient has 2 days to use them, or they will go into the system. This alleviates any waste of critical blood product.

The procedure to have platelets donated to Nonnie is different than when she was at UCLA. Papa has to pay out of pocket for each unit of platelets for processing and transportation ($135). Due to the high number of people asking to donate, we need to come up with a plan. Our strategy will be to avoid having multiple donors go in on the same day and to see which donors Nonnie responds to best.

All future donations will be made at the Riverside office. Please give me a couple of days to coordinate with Papa and the doctors to develop our plan. Thank you all so much for your prayers and support!

Calling All Platelet Donors

Nonnie has enjoyed being home over the last week. Other than feeling a little weak, she has been feeling pretty well. Starting yesterday and progressing through today, she has become very weak and short of breath. Papa took her to Riverside Community this afternoon and her counts have dropped significantly since last week.

The Oncologist she is seeing in Riverside is finishing up the prescription to allow people to make a direct donation. If you have given to Nonnie in the past, we are asking that you please make an appointment as soon possible. If you have wanted to donate, but could not because of scheduling or having to drive to Los Angeles, you are in luck.

We are hoping that there is no delay in getting the authorization. I made an appointment on-line tonight for tomorrow morning and will post to let you know if there were any issues. Please contact the Blood Center of San Bernardino at (909) 885-6503. The address is 384 W. Orange Show Road San Bernardino, CA. Once you go there, and are type-matched, your subsequent donations can be made in Riverside. Please pass this information to as many people as possible. Thank you and God Bless.

Look Who's Home!

Nonnie was so close to coming home on Saturday, but a fever kept her in the hospital over the weekend. As hard as that was for her to be in the hospital, it gave us the opportunity to get the kids moved into their new rooms and get things put back in order.

She received the last of my platelets this morning and 2 units of Linda Nelson's for an added boost to get her home. Papa went down to the hospital this morning and packed her belongings up to take home. Nonnie spent 34 days at UCLA this last round of treatment. The bed is freshly made and she is looking forward to being home for an uninterrupted night sleep!

The arrangements have been made to have a home health nurse stop by daily to take blood. Depending on her need for blood or platelets, she will go to Community Hospital in Riverside to their blood bank. Starting next week, she is scheduled to begin a lower dose chemotherapy. Once they get accustomed to the new routine, we will have a better idea of what needs there might be. In addition to all of our prayers, I believe by her being home surrounded by family and loved ones will help her to heal.

Unwelcome News

Yesterday, Nonnie got a blood marrow biopsy to check if the leukemia cells are still present. There were no "blasts" found as of last night. The "blast cells" are the ones that produce the abnormal cells, and those crowd out the production of healthy red and white blood cells and platelets.

The biopsy was then sent for further testing to see the effectiveness of the last chemotherapy treatment. Unfortunately, we did not receive the news that we were hoping and praying for. The leukemia is still present at this time.

Papa is going to UCLA in the morning, and she will be discharged home. The plan is to have her stay home for a week, receiving blood and platelets as needed in Riverside on an outpatient basis. The following week, she will get daily chemotherapy for five days. The treatment lasts one hour per day. They will check the effectiveness after about three weeks. This treatment will be less potent that the last chemotherapy. If there are signs of improvement, they will repeat the process a second time.

The goal seems to be to limit the spread of the leukemia cells with a less potent drug, allowing her to get strong enough to go back to UCLA for another induction round. At this point, her body is not strong enough to go through that so soon.