Thanksgiving In Oregon

The timing of all of the recent treatments could not have been any better! Nonnie and Papa are driving north to Oregon as I sit and write this entry. Dr. Paquette removed the PICC line yesterday and gave the "thumbs up" to them leaving town for Thanksgiving. She is feeling absolutely great since being home, and is looking forward to having all of the grandkids together for the holiday.

Nonnie and Papa are going up a couple days early to get the yards trimmed and the refrigerator full. Even though the weather forecast is calling for rain, rain and more rain, all of us boys are bringing our motorcycles to go explore the best trails on Earth! Thanks to everyone for their continued prayers and have a happy Thanksgiving. I will try to post some pictures next week.

She Did It Again

This morning, the doctors reviewed Nonnie's blood tests, and confirmed that her counts have risen above the level that is required for her to be released from the hospital. In fact, her counts are at their highest levels upon discharge since undergoing the initial treatment in April. Her platelet levels were at 95,000! Of course, it took a while for Nonnie to say all of her goodbyes to the staff, but they finally got on the road just after noon.

This is the second consolidation treatment that was just completed. As you could imagine, it takes Nonnie a little while to adjust from being in the hospital room for so long, to being out on the freeways, etc. Papa took Nonnie to Miguel's on the way home to satisfy the her craving for Mexican food. He then went to the store to get a few things for the house, while Nonnie picked up Brennen and took him to Blockbuster to get a movie. Those are the things she misses the most!

The plan is to meet with Dr. Paquette on Wednesday of next week, and then pack up to head to Oregon for Thanksgiving. This will be the first time since August of 2008 that we have all been up there together. This year will be so special because we all have so much to be thankful for!

Happy Birthday

When you spend as much time in the hospital as Nonnie has over the last year, it is very likely that some of those days will be holidays or other special days. Today is Nonnie's birthday, and she actually had a very nice day today! She was moved back to the 6th floor last night, and she is feeling very well. Her counts are on the rise now, and she received both units of Mike's platelets this morning. By tomorrow morning, her platelets will be higher than they have in about a year!

Nonnie received tons of birthday cards and phone calls wishing her well today. In fact, she had to charge her cell phone 3 times because of all the activity! I forgot a cool story from last week....Chuck and Kathy Reid visited the hospital last week. While the girls talked, the boys went to the world famous Jerry's Deli for lunch. Papa always jokes about what famous person he is going to see every time he takes us there. This time, they saw Jerry West.... a Lakers basketball player and coach who is now in the Hall of Fame. Only in L.A!

Nonnie is now in room # 6143 and the phone number is (310) 267-6151. Nonnie and Papa think they should be discharged no later than this Friday. How is that for a sweet birthday present?

Goal Setting

It is hard to believe that 3 weeks have already gone by since Nonnie has been back in the hospital. The last several days have been quite busy. After her move to the 7th floor on Wednesday night, she received blood on the following day. Her platelets have been hanging in there around 15,000 up until Saturday. Unfortunately, she started a fever early yesterday morning which usually affects those numbers significantly.

I shared some bad information last week regarding the lifespan of platelets. The actual time frame they need to be used by is 5 days, not 7-10. Since Nonnie's platelets were not low at that time frame, Mike's platelets were given to another patient. At least they did not have to go to waste! Mike went back to UCLA yesterday to give more platelets that should be ready by Tuesday for Nonnie. In the meantime, she is receiving platelets from a different donor as I write this entry.

Regarding the room change, Papa learned that the old hospital had 80 hospital beds in the cancer wing. The new hospital has 41 beds, which is why the demand is so high for a room. Since her fever started yesterday, she is on a list of 10 people waiting to get back on the 6th floor. She spoke with a friend who just came back for treatment, and he is in the maternity ward waiting for a room! I wonder who is getting more rest?

The goal today is to get the fever under control, and then get Mike's platelets in a couple of days. If all goes the same as the past, she might be able to come home later in the week! She would then go back to Dr. Paquette after being home for a week. At that point, she will ask about going to Oregon for Thanksgiving with the family. Is that too much to ask? Only HE knows!

Room Change

Nonnie was informed last night that she will be changing rooms. The reason for the move, is that there are other sick persons waiting to get a room and she was the most well person on the floor. It was encouraging to her and Papa to know that she is doing well and that another patient can be treated by the awesome staff at UCLA! Her new phone number is (310) 267-6249.

Platelets 101

As a refresher, Nonnie receives platelets when her counts drop below 10,000. When she has a fever, she will get platelets when that number drops below 20,000. That is also when the "fire drill" is conducted. This weekend, she did not have a fever, but the donor platelets only raised up to 15,000 and then dropped the next day to around 8,000.

Yesterday, the doctors decided to give Nonnie the platelets that Mike had donated last week. Within an hour of the infusion, her numbers jumped from 8,000 to 44,000. Even crazier, the sores she developed in her mouth were gone before lunch! It is likely that she will need the second and last unit of Mike's platelets by the end of the week, which only have a 7-10 day shelf life. Mike is very excited that he was able to help his mom, and will likely be called on again in the near future.

Kenny and Kathy Winkler came by today for a really nice visit, and they brought a bag filled with activities to pass the time. It included coloring books, UNO, playing cards and a dice game. What great friends!

Speaking of old friends, Judge Ward stopped by the house last week and gave Papa 2 photo albums from his summer trip to Africa to share with Nonnie. Judge Ward is a long-time family friend and is the person who Papa credits his photo album expertise to. Nonnie told me she spent 2 days looking at all of the beautiful pictures and it helped take her mind elsewhere.

Nonnie has had continual support and encouragement from the staff, in fact, they have been giving her the "thumbs up" indicating that they heard about the successful platelet transfusion.

Calling All Platelets!

Last week, Nonnie and Papa were in the waiting mode, watching her counts drop throughout the week. They did not have to wait long...... on Thursday, she received her first blood transfusion, which she did not have any negative reaction to. Starting on Friday, she has received platelets daily through Sunday. Unfortunately, the donor platelets are only slowly raising her levels. The staff has put in a request to the blood bank to find the same compatible donor from last time.

Mike went up to UCLA on Friday morning to give platelets. This is a 2 hour procedure that takes the donor blood and filters the platelets, then re-infuses the blood back into the donor. I hear the time actually goes by pretty quick, because they set Mike up with a movie to watch during the procedure! Papa also sat with Mike and donated his blood that will be used for someone else in the future. What a team!

They plan on using the platelets from Mike as soon as tomorrow, and they generally know within a day how compatible they will be. Lisa is tentatively scheduled to do the same later in the week. For now, Nonnie is feeling quite well and her only complaint are the uncomfortable mouth sores called "Petechia". These are small broken capillary blood vessels caused from low platelet counts.

Nonnie and Papa spent Halloween in the hospital, but the weekend was topped off by a nice visit from the whole Asam clan!

One Of Those Days

After being in the hospital for nearly a week, Nonnie had one of those days yesterday. It began all too familiar with a poor night sleep, followed by general weakness and lack of appetite throughout the day. Fortunately, the fever that began to spike broke quickly and she did not have to do the "fire drill"!

Mike and Mary Carpenter went by this morning for a visit, and they were glad to hear that Nonnie had a great night sleep and she was able to eat her breakfast! Close one. They all had a meeting with Dr. Paquette, and it was decided to have Nonnie stay at UCLA for the rest of this treatment. Her counts are continuing their slow decent, but she has proven that she can handle anything that comes her way!

4 Down, 1 To Go!

It is Friday night, and Nonnie is almost due to get her last chemotherapy bag hung! She will be done with her treatment in just over 24 hours. If you remember prior to her going back to the hospital, her counts were higher than they have ever been throughout this process. The current treatment has lowered her counts to about half of what they were since Tuesday. What this means for her, is that her counts may not be low enough for her to stay in the hospital after the treatment (insurance issue). Usually, her counts are so low that she stays in the hospital until they come back up to an acceptable level.

This time, she may have to go home for a few days until they start to drop, or until she gets a fever. This sounds alright, but she would rather stay in the hospital for the entire time for a couple of reasons. First, there is the likelihood that there will not be a room available for her, so they would need to go to the UCLA in Santa Monica. This would be a matter of getting used to a new routine at another facility. Secondly, she is anxious about being at home and away from doctors should she have a fever or not feel well. I can certainly understand her concern!

So far, she has not had any significant issues, and she has not needed any blood products. Mike and Lisa are getting prescriptions next week to see if they might be a match.

Typical Tuesday

The kids wanted to call and talk to Nonnie this evening to get her up to date on their school work for the week. It was so cute to hear them talk to her as if she was here in person! She is doing very well, and things are going as expected. Papa went out to see a movie this afternoon, while Nonnie took her daily walk. Nonnie starts her 3rd treatment tonight and will finish on Saturday night. What an incredible woman!

Here We Go Again

Nonnie and Papa made their way back to UCLA yesterday, and were greeted by many of the same familiar faces they have become so accustomed to. They love their new room.... first of all, it is larger than the last room and it has new curtains and a freshly polished floor. The best part is the ocean view overlooking the Pacific Ocean! The weather was so clear today, that they were able to see Catalina Island from their room.

The nurse that started Nonnie's PICC line did so with precision. She started her first round of Cytarabine at 10:00 P.M. last night, and will continue each 24 hour dose for a total of 5 times. When I spoke to her this afternoon, she had just returned from a 30 minute walk while Papa was doing his loop around the campus.

Her spirits remain high and she appreciates all of the cards, phone calls and especially those prayers! She can be reached at (310) 267-6154 or at the address below.

Ronald Reagan UCLA Medical Center

757 Westwood Plaza

C/O Linda Asam, Room 6149

Los Angeles, CA 90095

Sources of Strength

The road trip up to Oregon is just what Nonnie and Papa needed! They returned last week feeling rested and re-energized in preparation for the upcoming weeks. Her blood counts remain strong, and she feels great.

When they were in Oregon, they visited the new cancer center that recently opened. A friend of the family works there, and asked if Nonnie would meet with the volunteers at the American Cancer Society office that opened that week. As you would imagine, she made a lasting impression with the staff! The volunteers directed her to several bins of reconditioned or donated wigs for cancer patients. She took advantage of a couple that look really cute on her.

The whole family spent the day together at their house yesterday for the first time since early summer. We celebrated Blaine's 11th birthday and the girls entertained us with their dance routines and cute antics. In typical Papa fashion, he made us a BBQ dinner that rivaled any restaurant!

The timing of being able to get everyone together this weekend was perfect! Spending time with all of her grand kids is what N0nnie needed to get the strength she needs to fight her next battle. Nonnie and Papa are going back to UCLA in the morning to start the next round of treatment.

Just Like Old TImes

Last Tuesday, Nonnie and Papa made it safely up to Oregon by early evening. It has been nearly a year since they were up there, when Nonnie actually started feeling some of her early symptoms. I can just imagine their emotions driving over the covered bridge and rounding the corner by the swimming hole, as their house came into view!

As if waiting, the house had all of the lights on, with the smell of home cooking as they walked in the door. Aunt Kathy (Dave's sister) went up to the house to do some dusting and light cleaning in preparation of their arrival. The crock pot was on the counter with a yummy vegetable soup and a loaf of Trader Joe's bread. The air outside was chilly, but the floorboard heaters were also on prior to their arrival. What an awesome sister!

Jack had the yard mowed before they got there and the grass is green as ever! Papa has been putzin' in the yard....which has always been his therapy. The wildlife is in full form up there. Just the other day, there were 7 wild turkeys and a mommy deer with her 2 babies that make their daily appearances. When I was on the phone with Nonnie, the 3 deer came out from the creek and before we got off of the phone, there were 8 deer in the yard as she looked out of her kitchen window. No wonder they love to spend time there with family and friends!

Exciting Results

Nonnie has been home for a whole week already, and she is doing extremely well! Besides the obvious of being in her own home and sleeping in her own bed, she has been able to get out to watch the grandkids sports. Papa went fishing on Wednesday with his buddies and will return on Sunday. Yesterday, Shannon took Nonnie to her doctor appointment, and they received some awesome news! When she left the hospital last week, her platelets were approximately 60,000. Her red and white blood counts were lower than normal, but that was to be expected at this point in the game.

Her results from yesterday have brought a complete joy to our family, that is nothing short of a miracle! Her platelets have climbed to 116,000....her red blood count is within the normal range, and her white counts are still a little low, but still gradually rising. The doctor removed her PICC line and gave the "thumbs up" for Nonnie and Papa to go to Oregon. On Tuesday, as they have for decades, they will make the 800+ mile drive back to the place where they call their second home......"The Oregon House".

She Did It!

It is hard to believe that just last week, Nonnie had the doctors baffled about her platelets. As usual, she remained strong and steadfast in her battle against the leukemia! After 26 days in the hospital, Papa was able to take Nonnie home again yesterday afternoon. As you can imagine, they are extremely happy to be home, and Nonnie is catching up on some much needed rest.

She has another doctors appointment late next week, and if she is feeling well, Papa is going fishing in the Sierras with his buddies for the weekend. On the following Monday, a home health nurse will stop by to take her blood and check her PICC line. On Tuesday, they are going to take their long awaited road trip to Oregon! Papa had a little in-service on how to maintain her PICC line while they are away. What a team!

Side note: Dustin's class is having a contest to see how many states they can get a postcard from. If anyone out there is able to help out, please send a post card to our home address. Thank you!

Dustin Nelson

19712 Ditmar Lane

Huntington Beach, CA 92646

Mr. Inventor

Today marks a full 3 weeks since Nonnie has been back at UCLA for her consolidation treatment. Fortunately, there have been many more up than down days! She is still having her low-grade fevers, but not nearly as bad as last time. Because of the fevers, her platelet counts have dropped from 39,000 on Friday, to as low as 17,000 on Sunday.

Starting yesterday, both her platelets and white blood counts have been increasing on their own! This was the case again today...... looks like her body is kicking this leukemia's booty! The doctors told Nonnie and Papa that she will likely not be in the hospital this weekend, which means she will be able to go home.

Nonnie was just thinking of putting a little color into her hair, when suddenly, it has began to fall out again. This time, Papa is her hair dresser. How is this for a visual? Papa uses a rolling lint brush over Nonnie's head to persuade the hair to come out on the tape, instead of on her pillow or into her food. I think he is on to something......don't be surprised if you him on a late-night advertising his new invention!

Some Gave All!

Over the last week, Nonnie's doctors have continued in their quest to get her platelets under control. She received platelets again on Wednesday, Thursday and Friday. The first 2 days were unsuccessful...... in fact, I learned a new word that explains why this is happening. This occurs most often in people who have had many blood and platelet transfusions, and is known as becoming "refractory" to the platelets.

In the immune deficient patient (Nonnie), the platelets can become less effective when her system recognizes the donated platelets as different than her own. The body then produces antibodies to attack and destroy the platelets quickly. If this type of reaction occurs, a blood test can be taken to check for antibodies, and the platelets you are given can be checked to make sure that they are similar to the recipients. This is known as "cross-matching", where certain proteins on the cell surface are looked at to make sure they are similar.

On Friday, the doctors began their search for the donor who gave her the platelets on Monday of last week. They had hoped that because she responded so well to that donor, they would not have to do the cross-match process. In the donor world, you never know if the donor is still able or willing to give again. Would you believe it if I told you that the donor was not only willing to give again, he/she actually works in the location where the platelets came from!

On September 11, 2009, eight years to the day that 343 firefighters gave their lives so others may live, this person stepped up and gave platelets to Nonnie. Her counts immediately went from 4,000 to 39,000! Now that we have that figured out for the time being.... we need for her fever to stop rearing its ugly head!

Cruisin' For A Bruisin'

On Sunday, our family went up to UCLA to visit with Nonnie and Papa. She was just finishing up another platelet transfusion when we got into the room. Dr. Paquette was up in Bend, Oregon running in marathon, and was expected back soon to discuss the concerns over why she was not responding to the platelets. By the time we arrived home, we got news that her counts went from 3,000 to 4,000..... this was not the news that we were hoping for!

Nonnie received another platelet transfusion yesterday from a totally different donor, and this time, her counts went up to 29,000. That's more like it! Along with the good, comes the bad..... another moderate grade fever. Like last time, this puts the staff into overdrive; more blood tests, chest x-ray's and a urinalysis looking for an infection. She had a horrible night sleep last night, but feels a little better this afternoon. The results of the tests came back, and she does not have an infection. Additionally, her body's response in fighting the fever caused her counts to go down to 17,000 today.

To give you all an idea of the affect of low platelets, Nonnie told me the following stories.... the staff takes vital signs around the clock, and yesterday she had a black bruise around her entire arm from the blood pressure cuff. She also she puts her left arm into a latex sleeve to keep her PICC line dry while she bathes. The top is held up by a rubber band, and it too, has caused a perfect bruise the shape of a rubber band. Since she has received the platelets, her bruises are now a cool greenish color!

Platelet Update

Nonnie is currently having an issue regarding her platelets..... as expected, her counts dropped again yesterday from 13,000 to 7,000 and she received a platelet transfusion. Normally, her counts rise 10,000 or more after getting platelets. This morning, her platelets were checked again, and they were at 3,000. It is unknown why she is not responding, but the likely answer is that the donor was not suitable. The danger in having a low platelet count is the threat of bleeding and not being able to clot.

She already has to brush her teeth with a sponge device to protect from having her gums bleed. Now, the doctors are concerned and do not want her to sneeze or even cough because this may cause internal bleeding. The doctors are going to conduct some tests and find a more suitable donor so she can get another transfusion. Despite the above news, she feels very good and is glad Papa is back from his fishing trip!

Gone Fishin'

I can't believe that Nonnie has already been in the hospital for a week and a half! Her hemoglobin counts have dropped, and she received 2 units of blood today. She spent alot of the day sleeping, because she also gets Benadryl to reduce the likelihood of having a reaction. Her platelet count is currently at 13,000 and she usually gets platelets when that drops to 10,000. This is all expected and part of the process. Nonnie still has her appetite and is taking her daily walks around the floor.

Papa has been so supportive and committed throughout this entire process, and Nonnie wanted him to get away while she is feeling good. Luckily, he was able to hook up with Mike and Matt Carpenter. The boys are going to San Diego for a much deserved fishing trip!