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