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"!
Sunday, August 30, 2009
Thursday, August 27, 2009
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.
Wednesday, August 26, 2009
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!
Tuesday, August 25, 2009
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
Friday, August 21, 2009
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!
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!
Thursday, August 6, 2009
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!
Sunday, August 2, 2009
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!
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!
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