Priceless Moments

Since UCLA is a training hospital, the "fellow" doctors are regularly reassigned to new patients. This is a term used when a doctor is continuing his/her education to specialize in a certain field while doing a "fellowship". They work under the primary doctor who in Nonnie's case, is Dr. De-Vos. Today the new fellow would give her some good news...... no need for any transfusions. This meant that today would likely be an uneventful day, so Papa used this opportunity to go home for the day. He might even get to check out a couple of the grandkids games tomorrow before going back.

This evening, Lisa was talking to Nonnie while driving Dustin to baseball practice. She was using her Bluetooth device, and Dustin asked Nonnie from the backseat "what was their story"? She told him that she was looking out of her kitchen window and noticed a mommy deer scurry into the bushes once spotted. She continued to watch for a few more minutes until she saw the mommy deer and a baby deer come out onto the grass. The baby's legs were so skinny and wobbly, she could barely stand up. The story had to end early because they had arrived at the field.

Lisa was nervous because she thought her mom was having a moment of dementia. After Dustin got out of the car, Lisa asked "what was that all about"? Nonnie told her that when she is in Oregon and away from the kids, she tells them different stories of all of the daily activities. Apparently, since the kids won't be able to see her regularly she told the kids to pretend that she is just in Oregon for a while. If only we could look through the eyes of a child's mind more often! Priceless.

Rise And Shine

Like clockwork, the staff came in this morning at 4:00 A.M to take Nonnie's vital signs. She quickly slips back into a deep sleep as Papa stares at the ceiling. Good thing he is a reader! He just turns on his light and grabs a book to get sleepy again. The bummer part is that he keeps picking up the book that features his favorite action character and does not go back to sleep. At least he is not reading one of those books with Fabio on cover!

Nonnie's blood counts are dropping again as expected. Her white blood count is down to 0.2, her red count is 9.9 and her platelets are down from 24,000 to 17,000. In summary, what this means is that tomorrow she will likely need a transfusion of either fresh blood, platelets or both. Dr. De-Vos mentioned this morning that they will "cross-type" the platelets in an attempt to find a more suitable donor. In the meantime, she is off of the anti-nausea medication because she has not felt any signs of sickness. She is to tell her nurse immediately if she begins to feel the nauseous and they will start her back on the medication. 

Say Goodbye To Yesterday

Whew! We are all so relieved that yesterday has passed and that Nonnie was able to finish strong last night. Papa returned back to the hospital at about 10:30 P.M. and after he made up his bed, they stayed awake talking for quite a while. Dr. De-Vos did his rounds this morning, and he explained that the reaction yesterday was due to her body rejecting the donors' platelets. In the future, a completely new donor will be used to hopefully avoid this from happening again. Thank goodness for all of those people who regularly donate! I feel like a schmuck.

As mentioned yesterday, Pam and Bubbles have been working out the final details for Nonnie's new wig. When Jack Marshall got wind of this effort, he contacted Pam to offer to pay for the new merchandise. After going back and forth, Pam finally gave in when Jack insisted to do this on behalf of Thompson & Colegate. You see, this is the law firm where Nonnie worked for 38 years and where all of the names mentioned above formed these lifelong relationships. I heard that Nonnie began to literally bawl when she heard about this kind gesture. There is still one thing that is interesting to me.......Pam has not worked there in many, many years and yet she gave in. I guess we all know who is still the boss!

Bump In The Road

Today signifies the completion of the first round of chemotherapy for Nonnie. This morning, she received another platelet transfusion. Unfortunately, her body continues to have an adverse reaction to this treatment. In addition to the itching and rash, she developed shortness of breath and a low blood pressure. The staff acted very expediently by giving her IV Benadryl for the allergic reaction and fluids to raise her blood pressure. She slept most of the day while Lisa kept her company. After a full day of feeling lousy, she finally regained her energy at about 8:30 this evening. 

When Lisa got home tonight, she could not stop talking about how much love and support you all have shown for her mother. Nonnie received a nice care package from Grandma Boo (Jeff's mom) and a "keepsake" box full of goodies from Charlotte. We got confirmation today that Pam and Bubbles have ordered the perfect wig that will resemble her natural hair. Good job girls!

The Final Countdown

After visiting with the kids and grandkids for Easter, Nonnie and Papa had a chance to catch up on some much needed rest. Papa went for a long walk this morning around the UCLA campus, and found himself amongst thousands of students being let out of class in transition to their next. I can't get the image of Rodney Dangerfield in "Back To School" doing a "Triple Lindy" out of my mind!

Nonnie was feeling energetic today and gave herself a bath and put her makeup on before Doug and Annie came by for a nice visit. Papa took them to lunch at "Jerry's Deli", the place to be if you are easily star-stricken. She even received a package today from Kenny and Kathy...... a cute Easter duck. 

She is getting the last of 7 chemotherapy treatments tonight and so far she feels pretty good. A nagging cough that is deserving of some Robitussin is her only complaint today. She is gearing up for the chemotherapy to take full effect later in the week by enjoying her daily walks and reading her magazines. Lisa is going back to the hospital tomorrow so Papa can go home to tend to the house for the day. 

Easter With Nonnie

Today, our family celebrated Easter like any other year........kids wake up parents early - check, kids rifle through baskets - check, egg hunt - check, breakfast - check, put on Easter clothes - check. The only difference this year was the direction our car would travel to see Nonnie and Papa. We headed north to Los Angeles and made record time. The Asam family also made the journey to meet up with us at UCLA. This was the first time our entire family was together since she went into the hospital.

Dr. De-Vos and his fellow made their rounds prior to our arrival, and they are pleased at how her treatment is going. The only discomfort Nonnie has is the rash that she gets when receiving fresh blood. She is given IV Benadryl to help with the reaction. 

Papa somehow made time to prepare Easter gift bags for the kids. The kids got Nonnie up to speed with all of their activities - school, sports, friends and vacations. It is in these times that you figure out that it does not matter what you are talking about, it is the time you spend with loved ones that really matters. Nonnie appreciates all of the calls and comments of support she is getting and she sends her love to all of you!

One Week Down

Nonnie was able to rest well last night knowing that Shannon and Brennen had returned home from Washington DC. Of course, I am sure that it did not have anything to do with Papa coming back to the hospital! Dr. De-Vos met with them today and he was able to share some preliminary information. The final results are not available yet, but for simplicity, try to put this information into 3 different categories: not favorable, favorable and very favorable. She is considered to be categorized in the "favorable" category (this is not a clinical term). As more information becomes available, we will give updates accordingly.

When Lisa and I walked into her room today, we could not believe the IV rack and pump she is connected to. She must drag this along with her wherever she goes. Yes, everywhere. Attached were IV fluids, antibiotics, platelets, chemotherapy and fresh blood. I equate it to a 4 star General that has just returned from war wearing his dress uniform jacket. The medals and pins are attached to commemorate the battles he has won. Her battle has just begun. 

Third And Final Round

Nonnie met with her doctor this morning and he was encouraged that her body is tolerating the chemotherapy treatment. Her white blood count (WBC) has gone down significantly this week, which means her risk for infection increases. She now must don a mask when going out for her daily walk. Yes, it is confirmed.... she did reapply her lipstick prior to putting on her mask. I guess that cute male doctor must have x-ray vision! 

When looking northwest from the 6th floor, you can see the Getty Museum. I am sure Papa will plan an adventure to visit it in person once Nonnie gets well. Pam and Bubbles are conducting a recon mission to find the perfect wig for Nonnie. They even went to her hair dresser to get the color matched. In the meanwhile, Lisa has ordered 2 hats that will be cute and comfortable to wear in a couple of weeks. She is going to take this look to a whole new level with her natural beauty. 

Round Two

Nonnie had her second treatment last night and she is now 48 hours into the treatment. The anti-nausea medication I mentioned yesterday is working its wonders. Her platelet count has dropped from 24,000 to 11,000 which is expected at this point in the process. We are still awaiting the results of the detailed bone marrow tests.

One of her daily highlights is when she can take a bath. They give her a waterproof bag over her arm to avoid infection at the PICC line site. Her room was filled with lots of love today with visits from family members. Mike, Blaine and Kylie came with Derek, Tammy and Dylan (Shannon's brother and his family). Papa went home tonight to do some laundry and manicure his lawns. Lisa talked to him tonight and as you could imagine, he misses her terribly. She will be getting her third treatment tonight and hopes to get a good night sleep.

Nonnie loves to hear the comments from all of you (Lisa reads them to her daily or brings our laptop every other day for her to read). If you want to send her a card or letter, the address is:

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6113

Los Angeles, CA 90095

Round One

Nonnie received her first chemotherapy treatment last night and feels surprisingly well today. Prior to the chemotherapy, she received 2 units of fresh blood which raised her hemoglobin count. In turn, this gives her the much needed energy to help her battle. The anti-nausea medication seems to be working rather well, as she has not felt any signs of sickness from the aggressive treatment. At 8:00 tonight, she will get her second dose of Idamycin.

When I spoke with Papa late this afternoon, they were getting ready to take a walk around the floor. The reward for getting out of bed is the beautiful view of the Pacific Ocean. Ladies, you are going to love this one........ she was actually applying her lipstick prior to going for their walk! God forbid anyone seeing her without her lips on. You gotta love this woman.

The Battle Is On

As I write this entry, Nonnie is undergoing her first chemotherapy treatment. She will be receiving 2 types of medication via her PICC line. This procedure is called "induction therapy". The first medication is called Idamycin, which is a potent medication given over 20 minutes, once a day for three days.  The second medication is called Cytarabine, which will be given continuous for 7 days. She will likely feel nausea during the treatment, but they assured us that they will be giving her anti-emetic medication to make her feel less nauseous. The goal of this treatment is to put her into remission. After 14 days, they will take another bone marrow sample to see how her body is responding to the treatment. They will use these findings to help develop future treatment plans for her. I am confident that by the grace of God and the support of her family and friends, she will respond favorably to the treatment. Get well soon Nonnie. We love you! 

Spring Training

After a long day awaiting the results from the bone marrow test, we finally met with one of the fellow doctors. She was a young pretty Indian doctor that showed genuine compassion without compromising professionalism. You could see in her eyes how hard it was to going to be to inform us of the news she had to share. 

The bone marrow test confirmed that she has the AML subtype 'M5 Monocytic' leukemia. These results were taken at the cellular level, and will help the doctor decide which treatment will work best. It will be a few more days until it is narrowed down even more at the chromosomal level. The term used was "cited genetics". After these results are in, they will be able to give a more definitive prognosis. After receiving this news, Nonnie had begun her training by walking 4 laps around her floor. This will help her stay strong and active to help fight potential future respiratory infections by inactivity. Go Nonnie!

Team Meeting

This morning, Nonnie called for a team meeting. In attendance were Papa, Mike, Lisa and Jeffy. Shannon could not make it because she and Brennen are in Washington D.C. for an 8th grade road trip. We laughed and sometimes got sad as we shared our feelings about the current situation. Nonnie even modeled the cute new hat Papa bought for her. Grrrrrr! Her platelets had dropped to 22,000 which explains why she was not feeling very energetic today. She also had an ultrasound of her heart, to make sure she was able to handle the upcoming treatment. Was there ever a doubt that her heart is the size of Texas? The tests confirmed this which was great news. We all waited in angst to hear the results from the bone marrow test taken on Sunday. In the meanwhile, we got hooked up with the hospital wifi to check out the blog that is beginning to take shape.

Setting up camp

It seems like wherever Nonnie goes, she meets a lot of new friends. Today, she met with Dr. De-Vos who is a Hematologist/Medical Oncologist. He is the primary physician that will be treating her. It turns out, he is a man of few words. She also met with the hospital Chaplain who prayed with Nonnie and Papa - you can never have too many prayers! She received a PICC line (peripherally inserted central catheter) that was inserted on the left side of her chest. This will be how they take blood, administer fluids, antibiotics and even her chemotherapy. No more sticking her with needles and IV's in her arms. Darn, she was getting so good at that! Her platelet count seems to be stabilized at 32,000 which is not alarming to the staff. Nonnie also had her bone marrow test this morning and we are still waiting for the results. Once the results are available, her diagnosis will be made and she will begin treatment.

Nonnie and Papa were feeling a little tired today and they snuck in a 3 1/2 hour nap. The cool part is her new alarm clock...... every 4 hours someone comes in to take her vital signs. The worst part of her new home is the food. Today, she had to eat chicken enchiladas for lunch and herb crusted salmon for dinner. Papa is going to spend the night on the couch tonight and the staff provided him with blankets. I won't be surprised if security stops by tonight because of the multiple complaints of loud snoring. If you don't believe me, ask any of his fishing buddies! Good night.

How's Papa?

Despite the fact that his girlfriend since the second grade is in the hospital, he is doing quite well. He is thankful that she is finally in a place that can give her the treatment that she needs. Papa will be busy trying to figure out how to balance the demands at home, and giving Nonnie the support she needs while in the hospital. Last night, he commuted back home to sleep and get some personal belongings for the both of them. He will probably split his time mostly at the hospital, Jeff and Lisa's house and maybe even Rick's boat in Long Beach to be closer to Nonnie. Unfortunately, flowers and plants are not allowed in her hospital room. We will update you on the rules for visitors etc. as the information becomes available. On behalf of our family, we thank you all for your thoughts and prayers.

The game plan

On Monday morning, Nonnie is scheduled to have a new bone marrow test to conclusively determine which type of Leukemia she has. There are generally 2 types: Chronic and Acute. She is believed so far to have the acute, which explains the speed in which it has progressed. The bone marrow test will confirm the type. There are 2 types of Acute: ALL and AML. So far, it is believed to be "AML" acute myeloid leukemia. She will undergo IV chemotherapy starting as soon as Monday afternoon or Tuesday morning and will be continuous for 3 days. She is expected to feel a little nauseous during the chemo, but it will not be until day 14 that she feels the full effect of the treatment. The goal here is to put her into remission. She will stay at the hospital for a month and then return home. After that, she will go back after about a week for a second round of chemo which is a little lower dose than the first. She will be staying in the hospital for about 3 days and then returning home. She will repeat this a total of 4 or 5 times until the treatment is completed.

Nonnie goes for a ride

On Sunday morning, Nonnie was transported by ambulance to UCLA while Papa followed them closely behind. If any of you have traveled through Los Angeles on a weekend, you know how fun it is to travel the freeways! Try it in an ambulance..... 1 1/2 hours from Riverside to Los Angeles. After a mix up at registration, Nonnie was assigned a room. It is a private room with a television, sofa and reclining chair, with a bathroom and shower. Papa is so excited that he will have a cozy place to take his afternoon naps. The nurse today was very friendly and took a liking to Nonnie (like that is hard to do!). We also met Dr. Ahmad who has excellent bedside manner and was able to answer all of our questions without talking over our heads. She is getting so good at being a pin cushion lately, she even let them take more blood today. They got her started on IV antibiotics this afternoon. The nurse said she can wear her own pajamas instead of the typical hospital gown. Of course, you know what Papa did.....yep! Off to Victoria's Secret to get Nonnie a couple of cute sweatsuits. He is so awesome.

Answered Prayers

On Saturday afternoon, we learned that Nonnie would be transferred to UCLA Medical Center to begin her treatment on Sunday morning. This is a brand new, state of the art facility on the UCLA campus called the Ronald Reagan Medical Center. Her doctors name is Sven De-Vos, who is a Hematologist/Medical Oncologist. Jeff has a friend that is married to the Medical Director of Orange County, previously in Los Angeles County. Dr. Stratton made some phone calls and we learned that Dr. De-Vos was actually recruited by UCLA because of his credentials and is a master in his field. He even told us that if he or a family member needed treatment, he would seek Dr. De-Vos. In addition to Dr. De-Vos, Dr. Aribi Ahmad (fellow) will be assigned to Nonnie. He is a student, that has already finished his residency in Internal Medicine, a residency in Oncology, and now is studying Hematology with approximately 10 years of practice. Sounds like we are heading in the right direction!

The dreaded phone call

Last Friday, Nonnie was feeling very weak and could barely muster up the energy to walk around her house. She received a phone call at 2:00 P.M. saying that she needed to get to the hospital because her risk for infection or bleeding was a major concern.  Papa drove her to Riverside Community Hospital, and by 3:30 P.M. she was admitted for the night. On Saturday morning, she got 10 units of platelets and 2 units of whole blood. This made her feel soooooo much better. She was literally doing jumping jacks so well that Jack LaLane would be jealous! The preliminary report was that she had a form of acute Leukemia. The rest of the day would be spent waiting for authorizations from the insurance company to get transferred to a specialty center to begin treatment. 

Tests, Tests and More Tests!

After meeting with the Oncologist approximately two weeks ago, she recommended additional tests to help figure out what is wrong with our Nonnie. She underwent a CT of her chest and abdomen, which were clear! That was the good news. Unfortunately, her platelet count dropped from 72,000 to 32,000 (normal is 150,000 to 400,000). She went in to get a platelet transfusion that next day followed by a bone marrow test......ouch!