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!

Poker Face

Last night, Nonnie finished her fifth and final round of her consolidation treatment! Her counts are continuing to slowly decline as expected, and she continues to feel well. The nurse made Nonnie promise that if she drinks plenty of fluids, she will disconnect the IV tubing from her PICC line. Having this off, she does not have to lug the IV cart and pumps around everywhere she goes.

Despite the temperature being in the high 90's with unusually high humidity, Papa is still taking a morning and evening walk around the village and UCLA campus. I heard he has already read 2 books this week and will probably need to get a few more to pass the time. Nonnie told me that she wants him to get a deck of cards, and teach her how to play poker! Watch out for the lady with the scarf at the next "World Series of Poker"!

Surprise Visit

With summer coming to a close, and school around the corner, Dustin and Sydnee wanted to go visit their Nonnie before our schedule got too hectic. It was a wonderful surprise, because Papa went home early this morning, and she was not expecting any visitors! The kids gave her their handmade cards and exchanged hugs, followed by a nice walk around the floor.

Nonnie is scheduled to start the 4th dose of chemotherapy tonight, which means she will finish the therapy on Saturday night. The staff told her that she may be able to go home for a couple of days, and wait for her counts to begin to drop. At that time, she will go back to the hospital and wait until her bone marrow begins to produce the white and red blood cells and platelets to an acceptable level.

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!