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!

Layin' Low

This week has been a game of "wait and see" on how Nonnie will respond to our platelets. Unfortunately, it looks like they are not as effective as we had hoped. The blood clinic is in the process of contacting the donor from September to check his/her availability to make another donation.

Dr. Paquette told Nonnie, "This will just have to be a week of laying low". Because of her severely low platelet counts, she is restricted to stay in her bed until her counts come up. Nonnie received 2 units of blood today and the last unit of directed platelets. She always feels so refreshed to get that fresh blood!

Nonnie told me that her Care Partner, Robert, hooked her up with a bucket of soapy water and washcloths at her bedside, so she could take a sponge bath. He also changed out her bed sheets and provided her with a clean change of clothes. He is the man!

The time is going by for Nonnie..... the hospital staff is very attentive, especially when they know Papa is not there. Derek and Tammy stopped by last night for a surprise visit, and Charlotte just arrived to spend the night when I was on the phone with Nonnie tonight. As you can see, our support group is doing a great job!

Nice Break

After being home for almost a week, Nonnie went back to the hospital yesterday morning. Blaine spent the weekend with his buddy Will and Kylie came down to our house. Papa stayed with Nonnie and even snuck in a movie while she was resting!

Lisa and I gave a "directed donation" of platelets on Thursday. This means that they are intended for a specific person. The platelets have a 5 day shelf life, 3 of which are spent processing and typing them for the recipient. If they are not a match, the donated platelets go into the system for another person. Even after this process is done, you still do not know how patients' body will respond until after they are given.

Nonnie's counts were low as expected, and she received whole blood and platelets in the afternoon. We are not sure whose they were, and the blood counts are not in as of this morning. She will likely get the other platelets today, and we hope that she responds well to one of our platelets.

Last night, Nonnie woke up around midnight to a very high fever. This prompted another "fire drill" and they were able to break her fever by this morning. She usually does this on day 14 post chemotherapy, but this time, it was on day 7. Hopefully, this means she is ahead of the game and she will be home a week sooner!

Her new room is #6153 and the direct phone is 310-267-6156.

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6153

Los Angeles, CA 90095

Momentary Break

On Saturday, Papa and Lisa took the kids up to visit Nonnie for the day. When they went out to lunch in Westlake Village, the girls talked Papa into getting them a UCLA sweatshirt. They both sported their new gear around the hospital and gained a ton of fanfare from the students and staff!

Papa spent the night at the hospital with Nonnie as she completed her last chemotherapy treatment that evening. The kids all came back to our house and rented some movies for their sleepover. In the morning, Papa had a huge surprise for the kids.... Nonnie was discharged to go home for a few days until her counts begin to drop.

She has a home health nurse coming by each day to take blood and monitor her status. She will likely return back to UCLA later in the week until her counts are at a desirable level. At this point, she is still in remission as confirmed by the recent bone marrow biopsy done last week. Praise God for the miracle He is working!

Happy New Year

Today marks the 5th day for Nonnie being in the hospital. Later tonight, she will get her last chemotherapy treatment. She is feeling well and began her walking routine this morning with her friend Tammy.

Nonnie has been reading a really good book that deals with the grieving process, and is encouraged that in time, the healing process will begin. Papa, Lisa and I are very excited, because we are taking the kids to UCLA in the morning to visit Nonnie!

Her levels are slowly beginning to drop, and will drop steadily through the end of next week. Lisa is bulking up on her iron intake, and has been eating her daily "Cream of Wheat" so she can give platelets once needed.

Round 2

Nonnie is finally all situated in her new room. The PICC line procedure yesterday went very well, and only took about 20 minutes to put in. The nurse that put it in has been working there for 30 years! Dr. Paquette took a bone marrow biopsy and they are still waiting for the results from yesterday.

She is currently halfway through the second dose of chemotherapy, which changes out at approximately 11:00 P.M. each night. Nonnie took a bath this morning and is feeling good. She tells me it is quite the process because she is connected to all types of tubing and machines. I bet it feels good to be in her fresh jammies!

Papa is on his way to pick up Blaine and Kylie to go back to Riverside. They are going to see a movie with a group of friends this afternoon. Nonnie plans on spending most of her time catching up on thank you cards and getting her rest.

Back At It

As you can imagine, this Christmas was a bitter-sweet time for our family. We all got together and went to Disneyland for the day on Christmas eve, and spent Christmas in Riverside. It was particularly difficult for Nonnie, knowing that she had to return to the hospital for another treatment.

This morning, Nonnie and Papa brought Blaine and Kylie to our house so they could get checked in at UCLA. There were several patients being discharged this afternoon, which delayed Nonnie from getting into her room until late this afternoon. She is becoming an old pro at this routine!

Within minutes, she was in a hospital gown and giving blood to check her admission levels. The team that inserts the PICC line will return tomorrow to give one to Nonnie. Until then, she has an IV that will be used for the first dose of Cytarabine starting tonight.

Nonnie told me that there have been so many hospital personnel stopping by and offering their condolences and words of encouragement. I think of them as additional "support crew members" that we all know she needs! Her direct telephone number is (310) 267-6148.

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6137

Los Angeles, CA 90095

December Update

There are no words to describe the loss and depth of sadness that our family has endured over the past 4 weeks. We give thanks to all of our friends that have overwhelmingly given their support and prayers. You will never know how much we appreciate knowing that you are with us, and appreciate all that you have done.

We are anticipating a difficult holiday season, but we know that God will give us the strength to move on. Blaine and Kylie are living with Nonnie and Papa and have returned to school. They are blessed by a huge support group in Riverside from their school and church.

Nonnie is going back to UCLA on December 28, 2009 to continue her treatment, with one more remaining afterwards. We wish you all a Merry Christmas.