Round 3

I just got off the phone with Nonnie, and she told me that she just started the third round of Cytarabine. She sounds very positive and feels absolutely great! Nonnie became so accustomed to being home and staying active, it sounds like she is a little bored. She has continued her walking routine around the floor, and Papa is back doing his walk around the campus as well. We have to get her well soon so they can go up to Oregon and enjoy the fall colors!

Familiar Faces

After being home for 10 weeks, Nonnie and Papa returned yesterday to UCLA to begin the consolidation treatment. It was very comforting for her to see all of the staff that had been so supportive and reassuring during this entire journey! She had a PICC line re-inserted in her arm to begin the chemotherapy treatment last night. The chemotherapy drug is called Cytarabine and is used in a lower dose than the last time. This will be infused continuously over a five day period, and so far, she feels completely normal. The length of their stay will depend on her body's ability to get her counts back up to acceptable levels.

The Oncologist I have made reference to over the summer is Dr. Paquette. He was Nonnie's doctor while she was home and when she went to the clinic. He is still assigned to the clinic, but he came by to visit Nonnie this morning to check on her. He told her that he wants to "adopt" her as a patient. This means that he will be her primary doctor, even though the attending Oncologist will still help out while she is in the hospital. It is to no surprise that these doctors have made a personal bond with Nonnie!

Papa is also back to his normal routine.... he went home this morning to tend to the house and get Brennen off to the golf course. As long as Nonnie feels good, he will go home on Tuesdays and Fridays to rest his back from the couch that he sleeps on while at the hospital. Her direct room phone number is (310) 267-6152.

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6145

Los Angeles, CA 90095

Shocking News

Over the past couple of weeks, Nonnie and Papa have been anxiously awaiting the phone call to return back to UCLA for the cord blood transplant. Finally, all of the authorizations were taken care of so we could move forward. Her doctor conducted all of his tests, and decided that the best possible cord blood match was the unit in Spain. It looks like she will go in on Monday to begin her next treatment.......

If you remember back a while, her sister Carol was tested to see if her bone marrow was a match, and unfortunately, she was not. Carol would have been the best possible match, but to be sure, he requested that Mike and Lisa give a blood sample last Wednesday to double check their compatibility. Lisa had the opportunity to see what it was like to be Nonnie for a day. She was poked and prodded by what may be UCLA's newest student! After several unsuccessful attempts at drawing her blood, another nurse came over and drew 4 vials of blood. Lisa is hoping that she will be the "perfect match" so she can take over Mike's position as "Nonnie's favorite".

Earlier that morning, Nonnie and Papa went to get a bone marrow test to get her final blood counts as protocol to start up again next week. The doctor was joking around, and said "wouldn't that be funny if your blood samples returned, and your platelets have gone up"? That evening, Lisa called her mom to tell her about the experience, and that she had a bad feeling that her blood was misplaced by the scattered nurse. Nonnie called her doctor to let him know that all 3 of their samples were completed and asked him to verify that all of the samples were labeled correctly.

It typically takes up to 3 days to complete the blood tests, but he obliged, and went to the lab to put Nonnie's mind at peace. When he called her back later that evening, he had some news that shocked even himself! Up until now, Nonnie's white and red cells were virtually non-existent, and her platelets were at dangerously low levels. This is why she needs the stem cell transplant via cord blood. The doctor told her that her white and red blood cells are in the "normal" range and that her platelets count is at 75,000! What does this mean? It means that she does not need the transplant, and that she will begin her consolidation treatment as planned on Monday! This is by far the best possible news and this procedure not only gives her the least amount of side affects, but is also the safest and has the best long-term outcome. There is no medical explanation as to why her counts went up as they did. Praise God!

Cord Blood Meeting

Yesterday was the long-awaited day we have been waiting for....Nonnie and Papa finally met with her main Oncologist and the representative from the Cord Blood Registry. It sounds like within 2 weeks, she will be back at UCLA to continue her treatment. Until then, she is awaiting the necessary authorizations from her insurance company, while the registry continues to work on getting the proper match.

The registry goes through a database of potential donors to find a match for the recipient. If you think of a scale of 1 to 10, 10 being a perfect match, they have found 4 potential donors that have a 6 of 10 match for Nonnie. That is a perfectly acceptable number for these type of transplants, whereas bone marrow transplants require a 9 of 10 match. Typically, the recipient will require 2 cord blood units due to the size and volume of the cord blood. Because Nonnie is over 50 years old, she will only receive 1 cord unit due to her age. 

Although there are only 4 cords that match Nonnie throughout the registry, they need to examine each one individually to find the very best match. We have learned that 1 of the cords is in Spain, and could take up to 2 weeks to get to UCLA. The other 3 are located in the United States and could be shipped the next day. Nonnie always wanted to be bilingual, so don't be surprised if she starts speaking Spanish after the transplant! 

Something Missing

Last week, Nonnie and Papa traveled to Los Angeles for an afternoon filled with doctors appointments. Prior to receiving a cord blood transplant, it is necessary to have a full physical to see if she is strong enough to continue the current treatment plan. Nonnie met with a Cardiologist to have an EKG, a Pulmonologist to check her lung function, another doctor to check her liver and kidneys, additional tests for her blood, and of course, another bone marrow biopsy. We are still awaiting the results and expect a meeting with her primary treating physician in the near future.

Lisa and I brought the kids up here to Oregon to check on the house. Nonnie and Papa have not been here since late last year, when she began to start feeling some of the symptoms of her leukemia. Several neighbors have stopped by offering supportive words and a gift that we will bring back later in the week.

We have seen a couple of deers on the property and have all of the family memories, but there is something missing that just can't be replaced......it is the love and happiness of Nonnie and Papa that we miss the most!

Change In Plans

The results from the bone marrow biopsy are back, and there is a new plan for Nonnie starting next week. There is a mix of news to share regarding the results......there is no sign of leukemia in her blood, but her bone marrow is no longer producing platelets. This is one of several things, including both red and white blood cells that are produced in the bone marrow.

Instead of undergoing chemotherapy next week, Nonnie will most likely get a cord blood transplant. As more information becomes available, I will update you on that process. Until then, keep those prayers coming!

Still Waiting

Well, it has been a while since the last update, and I hope everyone is having a great summer! Can you believe that Nonnie has been home for 7 weeks? As last updated, Nonnie has continued with her twice a week in home health nurse and staying busy spending time with family and friends. 

Last week, she went in to get a bone marrow biopsy, and they are expecting the results early this week. If all goes as planned, she will return to UCLA to continue her consolidation treatment. 

The whole gang came down to Huntington Beach for a BBQ and swim party for Mike's birthday. If you ask Nonnie, she will tell you that she feels better than ever. Although she is not looking forward to going back in to the hospital, she is ready to continue her battle. Stay tuned for further updates later in the week.

Progress Report

With the exception of knowing she needs to go back to UCLA for further treatment, Nonnie and Papa are back to living their normal lives. They have been busy spending time with the grandkids, attending sporting events, dance recitals and all of the typical fun summer activities. She is still having the home nurse come to the house to take blood and clean the PICC line twice per week. 

On Friday, they went to meet with the doctors to discuss the upcoming treatment plan. Her platelets are lower than they would like, so she will be at home for two more weeks. At that point, she will return back to the hospital and undergo the same chemotherapy treatment as the last time. If you have not had the chance to talk to Nonnie, her spirits are high and she remains extremely positive.

Relay For Life

Hello everybody. No need to panic, I needed to take last week off to rest my fingers! Everything is going just as expected at this point. After the visit to the clinic last week, Nonnie got some good news, which made being home more enjoyable. Her doctor told her that she could go out in public and "live it up". Of course, Papa did what you would expect.... he took her shopping, went out to dinner and even went to the movies. It is like they are dating all over again!

Last weekend, the Huntington Beach Firefighters Association participated in the American Cancer Society Relay For Life event held in Huntington Beach. This is an annual race held in cities all over the United States to raise money for cancer research, etc. It is a 24 hour race, in which teams gather to walk the course to raise money from donations. We brought our BBQ trailer and cooked breakfast, lunch, dinner, smores and a midnight snack for over 600 participants and volunteers. 

Our team raised $13,000 this year to give to the organization. At night, the course was lined with personalized paper bags, each with a candle inside illuminating the path. The coolest thing was when one of our firefighters' daughters cut and donated 12" of her hair for "Locks of Love". Allison is 9 years old, and she donated her hair in tribute to her grandpa. He too was a firefighter and passed away from cancer 2 weeks prior.

Updated Game Plan

Nonnie and Papa went up to Los Angeles this morning to meet with her doctor. He is very proud of her for facing this challenge head-on, where most people would have ducked and covered. He told her that her counts are doing very well, and at this point, she has no limitations. This means she can go out in public places like restaurants, movies, etc. She will have to listen to her body and be careful not to overdue her activity until she is back to full strength.

The doctor told them what the game plan will be starting in a couple of weeks. The best treatment that she can receive will be identical to what she just finished.....repeated multiple times. Starting in 2 weeks, Nonnie will return back to UCLA for a consolidation treatment, which will be much like her last visit. The treatment will be a strong dose of chemotherapy, followed by several weeks in the hospital. After that, she will go home for 2-3 weeks and repeat all over again for a total of 4 more times.

This treatment will give Nonnie the best possible chance of staying in complete remission. She is willing and able to continue the fight as long as it takes. All she needs is the continued love and support she has received throughout this process. For now, she is enjoying being in the comfort of her own home and being surrounded by loved ones.

Reasons To Celebrate

As I sit here tonight reflecting back on yesterday's news, I am finding it difficult to articulate the emotions felt not only by myself, but everyone following Nonnie's journey. This news could not have come at a better time in our family's lives! Yesterday was a cause for a triple celebration. Brennen graduated from the 8th grade, Shannon turned 30+10, and to top it all off......Nonnie learned that she is in remission. 

Within minutes, the news spread like wildfire. There were countless phone calls and e-mails made across the United States to share the good news. If only we could have reclaimed all of the tears of joy throughout the day, I believe that the water crisis in California would have come to an end! 

Nonnie and Papa are going to visit the doctor first thing in the morning. We anticipate learning what the next steps are going to be over the next weeks and months to come. Thank you for all of your continued support and prayers. 

God Is Good

There is no way I could have waited until tonight to share this information with all of you. I got a call from Nonnie this morning, and I could tell she was extremely emotional. She told me that she was going to try not to cry, but the emotion poured out before she could speak. Her doctor called her this morning, and said he was not sure when he was going to meet with her at the clinic. He wanted to make sure she knew that the induction chemotherapy treatment was very effective. In fact, Nonnie is now in remission!

The next step will be the consolidation phase of treatment that will be discussed at a later date. Nonnie has proven again that she has the strength and courage of a warrior. Thank you all for the continued support and countless prayers.

The Magnet

As you could imagine, Nonnie and Papa are really enjoying being back home! The home health nurse came by yesterday to clean the PICC line, take vital signs and blood samples. When the nurse arrived, he was not sure who the patient was. Papa was in the back yard washing windows, where he slipped and fell to the ground. He narrowly missed injuring his eye when he got a close up view of the freshly pruned Oleander. 

It is no surprise that Nonnie was going to draw many visitors while back at home. Papa has given her a new nickname......."The Magnet". Since she has been home, Nonnie has had quite the social life! She has been busy getting caught up on the phone with family and friends and reading the messages left on the blog. Today, she had visits from Pam & Diane, Charlotte and Mary. In the morning, they are expecting Buddy & Kris to come by to visit and give Papa a hard time. 

When I spoke to Nonnie tonight, she sounded absolutely great! She told me she feels strong, both physically and emotionally. There are no test results available yet, but we expect to hear from the doctor later in the week. For now, she actually prefers to be removed from all of the doctors and nurses while she is at home. 

Welcome Home

No matter who you are, a person develops a routine around the responsibilities or activities in their life. For Nonnie, it has been developed around a physical exam every 4 hours, 24 hours a day. Fortunately, it looks like she won't have any problem getting situated at home! She had a great night of uninterrupted sleep and was able to relax all day. Nonnie stayed busy today unpacking and organizing all of her gifts that she has received. Mike & Mary came over for a visit this afternoon, and then Papa topped it all off with a fillet mignon and mashed potatoes dinner. Welcome home Nonnie!

Home Again, Home Again, Jiggitty Jig

Finally, the day we have all been waiting for has come! The only thing holding Nonnie back from going home this morning, would have been a fever. There was no way that was going to happen, judging by the amount of prayers that went out for her this week! Papa returned back to UCLA at 9:30 A.M. to help get packed up and checked out of the hospital. They returned back to their home at around 1 P.M. this afternoon.

The bone marrow results will not be ready until next week, and for now, they do not want to think about the results. She will have a home health nurse stop by twice a week to change the dressing on her PICC line and take blood, vitals, etc. Nonnie is going to meet with her doctor at the clinic later next week to discuss her case and then go back to UCLA for the next treatment after 2 weeks. 

Today, we all went out to Nonnie and Papa's house to spend the afternoon with them. You can tell that she feels very strong and is thankful to be home. It is so awesome to see her watch every move that her grandkids make, and just sit there and smile. The blog title is what Nonnie used to say to the kids when they returned home. What an incredible way to start out the summer!

Need Proof?

If any of you would have asked me earlier in the year, "What is AML?", I would have told you I have never heard of the term. Over the past several months, we have all learned about AML and the effect it takes not only on the patient, but also on the family and friends of the loved one. This disease does not discriminate and has no boundaries, as evidenced by Nonnie being dealt this horrible card.

I spoke with Nonnie tonight, and she told me that she met with the nicest Indian lady who is a Chaplain at UCLA. For the last 2 days, they have talked and prayed together, and formed a very special bond. Nonnie told me that she feels very strong and surprisingly at peace with her progress to date. This seems to be the "jumpstart" she has been looking for, to continue the momentum until Papa comes back tomorrow morning.

Thank God for answered prayers! How is this for proof! Nonnie woke up this morning with no fever and feeling incredibly strong. The results from the upper abdominal CT came back completely negative. Her blood counts are still on the rise and her Neutrophil levels are at 600. The staff took a new bone marrow sample, and they expect to get the results sometime tomorrow. 

Tomorrow morning is going to be very busy for Nonnie and Papa meeting with the doctors and nurses. It will all be worth it, because this time, Papa is bringing his bride home for a 2 week stay! I vote Nonnie for the "most inspirational" person of the year.

Getting Closer

Well, it has been 3 months since Nonnie has begun this physical and emotional journey. Today was another informative day at the hospital, but there are still some unanswered questions. Nonnie woke up this morning with another low-grade fever. Her nurse gave her Tylenol and she went back to sleep. When she woke up today and yesterday, she was completely drenched from the fever breaking. 

The doctors on Nonnie's floor rotated again today, and she really likes her new female doctor. She is very informative, and has excellent bedside manner! Nonnie is still on 2 different antibiotics that may be causing the fevers. The doctor told her that they will begin to ween her off of those to see how she responds. 

Nonnie's counts are still on the rise, and we need to pay special attention to the Neutrophil counts in the white blood cells (reference Neutrophil 101). These counts were at 400 today. To give you an idea, she was able to go home last time when that number hit 500. I am not sure how long it will take to rise, but she is definitely going in the right direction!

Information Overload

When Papa got back to the hospital today, he didn't know how much information he was going to learn today. First of all, the CT results from her upper chest and abdomen were all negative. They started a temporary PICC line in her right arm to inject the contrast. Today, she got a second CT scan of the lower portion of her chest. Let's hope for the same results.

Next, he learned that a possible reason for the recent fever is because of her low white blood count. She may always have something in her body that is being fought off by her white blood cells. The chemotherapy obviously kills off these cells, making her susceptible to infection/fever. Once the white blood cells begin to climb, the fever goes away, and you may never know what the source was. Pretty interesting!

Papa then inquired about trying to become a bone marrow donor. This is something he had always wanted to do, but regretfully never did. Unfortunately, he is not a candidate because the age range is 18 to 60. I am sure some of you might be disappointed to learn this, but now the rest of us have no excuse. We can make a difference!

Lastly, Nonnie's counts are continuing to climb! Her white blood cells and platelets have doubled in the last 24 hours. As long as she continues at this pace, it may be real soon that she is able to go home. For this to happen, we need her to keep getting stronger and avoid a fever. Most importantly, we need to pray that this treatment has put her into remission! That test will be performed prior to her going home next time. 

Typical Tuesday

There was no interruption in Papa's Tuesday routine today. Thanks in part, to the fact that Nonnie woke up without a fever this morning!  Her doctor was concerned about her recent fever, and he ordered a CT scan with contrast to rule out a respiratory infection. The results were not available as of this evening. 

Papa had an interesting day at home today. After paying his bills and doing chores, he went outside to notice Police cars in front of the neighbors house. He left his garage door open and found that both of his cars had been rummaged through. There were multiple cars in the area that had been broken into during the day. Fortunately, Papa does not keep anything of value in his cars and the Police had the person in custody. What a bummer thing to go home to!

Stay Strong

For whatever reason, this darn fever just won't go away for good. While not one of her worst fevers, Nonnie is still battling a mid-grade fever that literally drains the energy from her. The staff informed Papa today that the "Fire Drill" tests were all negative, but there is still little explanation as to why she is feeling the way she does. 

Unfortunately, Nonnie has been getting sick for most of the day. They are unable to give more Zofran at this point, but she has received Ativan which seems to take the edge off. Hopefully by morning this will all be behind, so that she can work on getting strong enough to come home!