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!