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.

Moving Forward

Nonnie has been on an upswing over the last several days! Her levels are remaining steady and she has not needed blood in at least 3 days. The doctors still want her platelet levels to stay above 50,000 until the GI issue is completely resolved. She has had some very effective platelet donors this week.

Papa spent the weekend at the hospital, while the kids went to Disneyland on Friday and a sleepover on Saturday. The house remodel is near completion, with carpet installation today. Nonnie told me that her mouth is getting much better, and even started eating food last night. If she ever sees another Ensure, I think she will throw it out the window! Lets pray she continues this trend throughout the week!

Rollercoaster Ride

Nonnie has been in the waiting mode all week long. Despite getting platelets and whole blood throughout the week, her counts continue to rise and fall like the tides. Other than a couple of mild fevers, this has been a pretty good week. She has been able to take her baths on her own, take walks around the floor, and she sounds much better that last week!

Papa went to the hospital yesterday and today. He is finishing up the remodel at the house, and is putting the finishing touches on in preparation for Nonnie coming home. Dr. Paquette is thinking in another week or so until she gets discharged. Yeah!

I was up there last week, and Nonnie got a stack of fan mail! There are so many people out there who love her and have been faithful with their prayers. One of the hand made letters was from a high school friend who has been following her story since last summer. This goes to show you that once you meet Nonnie, you are lifelong friends!

Weekend Update

Over the last several days, Nonnie has continued making small improvements. She has not had a fever to speak of, and she has taken a couple of walks. Her energy is low because she cannot eat, due to the painful mouth sores. The staff taught her a little trick....she uses Lidocaine to swab her tongue, which causes numbing like when you go to the dentist. This way, she can at least drink her 3-4 Ensure drinks that Dr. Paquette wants her to intake each day.

Lisa spent most of the afternoon, and into the evening with her mother on Friday. Yesterday, my mom (Kathi) and Diane visited with Nonnie before Papa went up for a sleep over. Poor Diane went to her scheduled platelet appointment, and was turned away due to a paper cut (sorry for the HIPPA violation)! I guess they are just being ultra conservative?

She is still getting her twice daily blood and platelets and they think the bleeding is resolved. Nonnie misses the kids terribly and cannot wait to get home to be with everybody.

Gaining Momentum

Nonnie has finally strung together a couple of days without a fever. The fevers were likely due to an infection she had, in which the antibiotics were resistant to. Once the antibiotic was changed, she began to feel much better on Tuesday evening. When I spoke with her last night and this afternoon, you can tell she feels 100% better than earlier in the week.

She got the first of two units of platelets that I donated last night, and it boosted her counts by 18,000. This put her well over the goal of 50,000 that Dr. Paquette is trying to maintain. The normal range is between 150,000 and 450,000. My stepmother Linda Nelson drove down from San Luis Obispo this morning and made a donation, followed by a surprise visit to Nonnie.

Papa is bringing the kids down to our house after their games on Saturday, so he can spend the weekend with his beautiful bride.

Donor Information

Several people contacted me regarding the last post with platelet donation questions. Based on the questionnaire I filled out on Monday, here are several of the requirements in order to donate: good health (no fever, cough, etc.), over 110 pounds, no recent tattoos (sorry Buddy), no international travel in last 12 months and of course the obvious related to promiscuity and drug use, etc. Some of you may be happy to hear there is no age maximum!

There is an extensive list of prescription medications that are not allowed, but I recommend calling if there are any concerns. Most importantly, due to the short 72 hour lifespan of platelets and the transportation costs associated with getting them to UCLA ($1,000 and up), all donors must go directly to UCLA to make a "direct donation". As previously mentioned, if you live further away, there is always a need for other sick people in those areas.

Fighting The Fever

Nonnie remains steadfast in her battle, and continues to amaze me with her strength and perseverance! I went to visit her this afternoon, and was heartbroken to see what she has to endure each time a fever spikes. For over an hour, her entire body was shaking.... trying to regulate its temperature. In addition, her breathing becomes very rapid in an effort to blow off the excess heat. By the time the fever breaks, she is exhausted and has no energy to do anything other than fall asleep. She has 2-3 of these a day, everyday for the past 8 days in a row.

While I was there, she just finished getting her second unit of platelets and blood for the day. She was given Ativan to help relax her so she can breathe more calmly, Oxycodone to treat the painful tongue and mouth sores and Tylenol to help break the fever. Despite all she was going through, she still managed to ask how our family is and wanted to know how our vacation was. Talk about being selfless!

The kids are back home with Papa and they are getting ready for a busy week with sports and school. Nonnie has had lots of company over the last several days, starting with Derek, Tammy and Dylan McGowan on Thursday....Kenny and Kathy on Saturday, and Charlotte all day yesterday. Many of you are far away, but her room is filled with beautiful cards and pictures of her grand kids. I am confident that our prayers and these gestures of support are what gives her the strength to fight!

I was asked by several people about the requirements for platelet donations in your areas, and will attempt to find the information tomorrow.

Platelet Donations Wanted

These last few days have been very difficult and challenging for Nonnie. She continues to have fevers every day, which significantly affect her counts. Papa told me that she goes through the "fire drill" every third fever. The abdominal pain she was having is gone, but the doctors are still trying to find the source of the GI bleeding. They cannot do an endoscopy because of her platelet counts. In the meantime, they are giving her a medication that is designed to assist in the clot formation.

Nonnie has received upwards of 14 units of platelets and the same number of blood transfusions. Typically, she does not get that many combined over the 3 week process! What the means, is that she is "refracting" the platelets and blood transfusions. In simple terms, her body is rejecting the donated transfusions. The doctors went back to check the prior donor compatibility, and the platelets I donated in January were effective.

I am going in on Monday morning to give more platelets for Nonnie. If anyone is healthy and willing, they could always use more donors. It is a very easy process that only takes about 2 hours. If you would like to donate, please call the UCLA Blood and Platelet Center at (310) 825-0888. Ask for Brian and he can get you scheduled to do a "direct donation" for Nonnie.

Toughest Woman Contest

There has been so much happening at the hospital over the past 5 days....Nonnie started the first of two chemotherapy treatments (5 days) on the first day at the hospital, which will finish tonight. The second chemo treatment (3 days) was a crazy blue color that was given on the second or third day. Due to all of the fluids they pump into her during the chemo, she has retained 19 pounds of water. The doctors have been giving her Lasix to remove the fluid, and it is already starting to work.

Early in the stay, she developed a bleed in her gastrointestinal tract. The doctors explained that this was due to her low platelets. She has been getting blood and platelets on a daily basis, and it seems that the bleed has resolved itself. Unfortunately, that did not come without any pain! She was on Morphine for several days to manage her abdominal pain.

A quick recap....On the first night, she had a fever...another night, she developed some respiratory distress which they made her wear a heart monitor that she held in her pocket that was monitored by the nurse station, the GI problem seems to be resolved and she is hours away from finishing the chemo treatment!

Papa went home this morning to deal with a few things at the house. We all spoke with Nonnie this morning, and she sounds great! She had already taken her bath, and was getting ready to take her walk. Keep up the strong work Nonnie!

Ready To Battle

Nonnie and Papa went back to UCLA yesterday morning to begin the next round of chemotherapy. As soon as they checked in, she got 2 units of blood. This made her feel better than she has felt all week!

Last night, she began her chemotherapy treatment. She was unable to get a PICC line because her platelets were so low. They were able to locate a donor, and her counts went up to 44,000 from a random donor!

Lisa and I brought all of the kids to Maui for spring break. We got a laptop for Nonnie and Papa, and have been able to "Skype" them. If you do not know what that means, it is a built-in camera that allows the users to see each other while they talk. This has been really helpful for all of us to stay connected.

They got moved to a new room today, which has an ocean view! When we talked to them today, Nonnie sounded positive and ready to battle! They would love to hear from their friends and family.

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6147

Los Angeles, CA 90095

Unwelcome News

On Wednesday, Nonnie and Papa went to the clinic to get her blood "type matched" in order to get a blood transfusion. They also took blood and did a preliminary test and found that her white counts have doubled in just one day to 22,000. Just last week, her white counts were as low as 3,000 and have been on the rise ever since.

Yesterday, she spent all day receiving 3 units of blood, which definitely gave her a little more energy and she felt less short of breath. Based on the symptoms Nonnie has had over the last several weeks and the preliminary blood tests, Dr. Paquette believes that the leukemia has returned.

Next Wednesday, she will return to UCLA and begin another chemotherapy treatment. Until then, she is taking an oral chemotherapy medication to stop the white counts from getting any higher. She will be getting a blood test this morning and on Monday to make sure the platelets do not get dangerously low.

The goal of this treatment is to put her back into remission, so she can get a bone marrow transplant. Dr. Paquette has been searching for any studies that Nonnie may be eligible for, but she does not meet the criteria for any of them at this time.

Resume Building

The fevers have been an ongoing problem for Nonnie this past week. Dr. Paquette told her this morning that as long as they are controlled with Tylenol, he is not overly concerned. She got a blood test this morning and is authorized for a bone marrow biopsy. The staff at the UCLA clinic is working to get her scheduled for that over the next couple of days.

In the meanwhile, Papa continues building his resume for "Husband and Papa" of the year! He is doing such an incredible job with Nonnie and the kids, let alone all of the other things on his plate dealing with the probate and selling the Asam house.

We need tons of prayers!

Blood Transfusions

Nonnie got her blood tests back, and her levels have continued to drop over the last several weeks. This explains why she is feeling so weak and short of breath. She was at a blood bank all day yesterday waiting to find a type match for a transfusion. She received 1 unit of blood last night and is scheduled to get another unit this morning. It takes 2 hours to get each unit! The next thing that will be scheduled is a bone marrow biopsy to further check her levels.

Adding On

It has been a few weeks since Nonnie has been home from the hospital. She is still having a hard time getting her energy back to where it was before she got the viral pneumonia. Papa took her to the doctor today to get a blood draw to send up to Dr. Paquette for review.

In the meantime, the kids are back at their normal activities.....Kylie is playing softball and Blaine is playing soccer. Papa has been staying busy overseeing a remodel that will provide 2 new rooms for the kids. This last year has been so crazy for all of us, so we booked a vacation to Maui for Spring Break!

Goin' Home

Within hours of my last post, Nonnie met with her doctor and received the long-awaited news. She was "Goin' home"! While the staff was preparing the discharge paperwork, Papa drove to UCLA to help pack up her belongings. By the afternoon, she was finally back at home with Papa, Blaine and Kylie. What a team!

The Fighter

Nonnie has been at UCLA for the last 11 days fighting an infection in her lungs. She has undergone countless tests and exams to figure out what was causing her fevers and respiratory distress. She has continued to improve dramatically since the weekend, and is hopeful to be released some time in the next couple of days!

During her hospital stay, she has been on a high volume of oxygen, and she is being "weened" off over the last several days. During all of her tests, we learned a lot about what is "was not", i.e. (bad stuff). The most conclusive result came back yesterday as being some type of bacterial infection. She is increasing her respiratory volume and exercise program and eagerly awaiting her discharge.

Prayers Needed

Last week, Nonnie began having night time fevers and feeling a little weak. As the week progressed, so did her symptoms. By Friday night, she began feeling short of breath along with her fever. Papa called her doctor, and he had them go to the UCLA Emergency Room. They ran a battery of tests to find the cause of her symptoms.

She has undergone multiple blood tests, CT's and MRI's in an attempt to find the problem. In the meantime, she is on an antibiotic to fight a possible infection. They have also tested for an embolis, pneumonia, H1N1, leukemia and cardiac function. She is on continuous oxygen because her O2 saturation drops. The cause of that problem has not been diagnosed.

A fluid sample was taken from the pleural space of her lungs for testing. At one point, she was in an isolation room because of her suppressed immune system. At this point, there is no indication that the leukemia has returned. We hope to have some additional news by tomorrow.

The Rock

The day has come that all of us have been waiting for.....Nonnie came home from UCLA yesterday afternoon from her last treatment. As you can imagine, she is extremely happy to be home, and our family is looking forward to a new year. As I understand it, she will be required to go to the clinic for a check-up every 3 months.

This has been an incredibly emotional and challenging ordeal, and Nonnie wants to thank all of her friends and family for their prayers and support. In addition, a huge thank you to the Doctors, Nurses, Care Partners and staff at UCLA. They always treated her with the utmost respect, compassion and professionalism.

Nonnie is, and always will be the "Rock" of our family and we are so proud of her for her strength and positive attitude. All of us that have been following this blog have witnessed something very special. The power of prayer.......... it really works!

Getting Closer

As I sit here writing this post, I can't help but to be thankful for all of the blessings and answered prayers in our life. I spoke with Nonnie this morning, and she told me that she started making her own platelets last night! This means that her bone marrow is working properly, and the chemotherapy did not do any damage. She will be getting some whole blood today and is expected to be home by the weekend.

The doctors are considering this to be her last treatment because there is no significant information available to suggest that another treatment would be beneficial. If fact, the potential for damage to the bone marrow could potentially increase with each treatment. For now, she is doing quite well and excited about the great news.

Fire Drill, HLA, Pizza and Friends

The last post mentioned that Charlotte was going to spend the night with Nonnie on Tuesday night. She did not know what she was bargaining for, because Nonnie spiked a fever that night. Charlotte witnessed first hand the "fire drill".

In the morning, and after the excitement, Nonnie received another unit of platelets. This time, they were able to do an "HLA match" to better predict the compatibility. Her counts went from 4,000 to 38,000! Now that her counts are up, she will finally be able to start taking her walks.

Yesterday was Brennen's 15th birthday. Papa and Blaine went to Woodcrest Christian High School, where all of the Freshmen had pizza and cake. Lisa and I took our kids to the beach at 15th street in Huntington Beach, and tied a card to a bunch of red (Brennen's favorite color) helium balloons. After a short prayer, we set them free and watched them rise up into the heavens.

Nonnie had a great visit today with Christie, Marcy, Carol and Miriam. These are the mothers of the kids who are best friends with Brennen, Blaine and Kylie. Afterwards, Chuck and Kathy Reid stopped by to spend time with Nonnie. Late in the afternoon, she mustered up the energy to take a walk around the floor. It sure must have been nice to get out of that bed!