And we begin...

I had another follow up yesterday at UCLA with my oncologist. Things are going well with the rash, so she has started me on my chemo maintenance drugs. The course is so confusing, I'm going to need one of those pill boxes my parents use! One pill one day, two the next, one pill the next day and one every ten days. Oh my! I'm confused already! I will be on these drugs for the next two years. I'll have my labs done in two weeks, and she wants to see how my blood counts do with these meds. If things stay the course and I remain stable, she may approve me to go back to work soon! Things are definitely on the right track!

In other good news, she gave me her blessing to drive again. Brett is finally free of being my personal chauffeur. To celebrate, I drove to Starbucks this morning and got my car washed. I'm so excited to say that I'm on my second tank of gas for the year! ;)

Brett and I will be celebrating 11 years of marriage tomorrow. I can't help be think of all the trials we've been through (sickness and in health, but mostly sickness). He is amazing, and I'm so thankful for all he has done during this time.

That is all - I'll keep you posted! KCA

School and Summer Fun

Anyone who has been around Jenelle in person knows that she gravitates to anyone with food. She may stumble and walk slow when we try to change her diaper, but if it's meal time she can walk to the table with grace and ease. So imagine our laugh when this photo came home from school last week.



At the start of the extended school year in July, Jenelle was promoted to 1st Grade, and thus has been moved to a new classroom with new teachers. She is still with the Orange County Department of Education program and we couldn't be more pleased with her new teachers and the overall setting of her classroom. There are more age appropriate things for Jenelle, and as her teacher says, "it is time for her to grow up a little!" I can tell you, many in our family have that same expression on our face when Jenelle sneaks up on you when you have food! That is why we had such a good laugh. The teachers are still getting to know Jenelle and her many unique characteristics. Jenelle is doing well with the change in environment, and we think it will be very good for her.

The county's program has undergone a lot of changes due to budget, and a lot of kids are now missing out on the expertise of the county teachers. It is very sad to see this happen. There is a lot more I could say but I will bite my tongue for now. ;)

And of course, Jack is not having any fun at all this summer. Here is photographic evidence as Aunt Nicki dragged him to Disneyland last night.



See, absolute torture! ;)

Follow Up at UCLA

We made it safely to UCLA and back today without any celebrity deaths! Thank Goodness!

I had a follow up with my oncologist today and things are going well. She finally gave me a proper weaning schedule for the Predisone, but it looks like I will be on it at least another month. I will be glad to be done with it. She does believe it is helping the rash, so I need to stay on it.

Speaking of the rash, it is resolving, and is not as painful, "flaky" or raw as it once was. I am however spotted where the rash was. The bad news from today is that my doctor said it could take months for the spots to go away, and I could end up with some scarring. The funny part was that she warned me not to use any "skin bleaching" products until she approved. I had not heard of such thing, so when both Brett and I said "bleaching?" she said, "you know, like Michael Jackson!" Which gave us all a chuckle remembering our last visit. (Oh yeah, I was correct and a paparazzi pulled the fire alarm -what a mess!) I'm also still pretty fatigued, and she said part of that was the Predisone, and part of it the chemo recovery.

The best news is that my blood levels were great and I am still cancer free! I see her again in two weeks and at that time she thinks we may be able to start chemo pill maintenance with the ATRA (Vitamin A).

I did not intentionally leave Brett out of the last update. Blame it on chemo brain. Brett is doing well. Brett is starting to return to work more during the week as he feels more comfortable leaving me alone at home. I think that is a fantastic sign that we are finally starting to get back to normal. For all that we've been through, it has absolutely been rough on Brett. I feel bad because there are many people taking care of me, but not many to take care of him. We are looking into some local cancer support groups, and we are surviving day by day. Brett has been my absolute hero, and I know we will survive.

Thank you all for the thoughts and prayers. I'll keep you posted! KCA!

More Hair

I was waiting to update on Monday, but realized it had been a while since my last update. Things are going well for all of us and we had a wonderful 4th of July. I rested most of the day and we spent the evening at a friend's home enjoying food and fireworks. The good news from the 4th is that Jenelle enjoyed the fireworks and didn't have seizures - Yay!



Jenelle has taken her door knob turning talent to daycare and has "snuck out" the front door at daycare twice now! Thank goodness they have a gate! The second time she did it, we're told the sprinklers were on, so Jenelle got her own little bath in the process. She is quick!



Jack is having a great summer and really enjoys having me home. He has mostly been doing baseball camp during the day and playing with lots of friends in the afternoons. He is very busy, but loves to tell me goodbye in the morning before he heads out.



I am doing well, but am still shedding a lot of dead skin. A lot of the pain is gone but I'm still really tired and weak. The doctor still has me on a very high dose of Predisone, and that just makes me shaky and tired. I can't wait to see her next week to hopefully start coming off this drug!



And finally, I took a new photo to document my hair growth. It is really coming in now, and is soft, full and curly. I have no idea what to do with it so I mostly wear baseball hats all the time. I think I need a trip to my stylist soon. Here is a photo for you to enjoy - notice there is no gray! ;)

And just because he's so cute, here is Jack at an Angels game enjoying summer!

Thanks for the continued prayers. KCA!

More Baby Proofing Needed...

Well, Jenelle gave us a little scare the other night when she locked herself into the bathroom. Until then, we had been getting by with closing doors to keep Jenelle out of certain places. The beauty of course in that is that Jenelle has learned to "turn" door knobs (and round ones at that!) Brett had to use a screwdriver to take the door knob off the door to get her out. A great milestone for sure, but now we definitely need to up the pace on the baby proofing.



Also, I wanted to share two beautiful candid photos taken of Jenelle and me by our cousin in law, Alain Chapuis at Easter this year. Thank you Alain, these photos are just priceless.





We hope you all have a wonderful 4th of July weekend. We are going to take it nice and easy and stay close to home. Enjoy!

Jenelle & Mommy Update

Jenelle had an appointment this morning with her G.I. doctor to check her g-tube and nutrition needs. Jenelle is doing very well weighing in at 50 pounds, 48 inches tall and the 50th percentile for both height and weight for her age. Dr. Idries was very pleased with Jenelle's growth and accomplishments (yet another doctor who hasn't seen her walk - that happens when you only see that doctor once a year.) She is cutting her back to two cans of formula a day since it appears that Jenelle eats so well now on her own. We will keep giving her the formula to make sure that Jenelle gets adequate vitamins and minerals and things she needs but might be missing from the diet of mostly pured veggies. We will see Dr. Idries again in another year.

Also, last Wednesday, Jenelle's school had their annual Awards and Promotions ceremony. I made it to the ceremony and got to watch Jenelle win an award for "Improving her Ability To Use The Bathroom Consistently and Chew Harder Foods." As always, the ceremony was sweet and emotional.

And, it seems I've been paying the price for over doing it these days. After the awards ceremony on Wednesday, I had enough energy to want to go to Tustin's concert in the park with some friends to listen to the music and celebrate a friend's birthday. That made for a full day, and then the next day of course we were at UCLA for my follow up, and well, you have the update on that. I'm still a bit sore in my knees from where I took a spill. On Friday, Brett and I decided to see a movie. After the movie, I was done. It was like I'd hit a wall. The weekend and most of today have been spent going from my bed to the couch and back again. I'm tired of being tired and can't wait to have some energy again.

Jenelle is doing well and I'm recovering still very slowly. Thank you for continued thoughts and prayers. I'll keep you posted!

A very interesting follow up at UCLA today...

PLEASE READ: If you have made your way to this website via "Michael Jackson Death Hoax" dot com, please know that the administrator at that website has used this post to support incorrect information. The fire alarm that is discussed below was for the 200 Medical Center Building in the Peter Morton Center. This building is next door to the Ronald Reagan UCLA Medical Center Hospital where Michael Jackson did in fact die on June 25, 2009. The hospital did not have a fire drill, nor was it ever evacuated during the time that the Jackson family was there. It was later determined that the fire alarm at the 200 building was pulled by a paparazzi to create a distraction so he/she could sneak into the hospital. I have tried to find a contact or an e-mail for the administrator at the Michael Jackson Death Hoax website but conveniently for him or her, one cannot be found. If the administrator reads this, please correct your post and remove your link to this website. If you don't, I will make a formal complaint to Wordpress about your site.

Today I had another follow up appointment with my oncologist at UCLA, and while there, Brett and I got caught in the middle of the Michael Jackson media frenzy regarding his death in the building next to the one we were in. What a sad loss at only age 50.

The day started routine, I arrived a little late for my 12:30 blood draw. Because the results take an hour, Brett and I walked into Westwood to Chili's for lunch. This was a good 3 block walk for me and I'm getting stronger. Apparently, while eating at Chili's, Michael Jackson, the King of Pop, was brought to UCLA Medical Center by ambulance in Cardiac Arrest around 1:00. As we walked back to my 1:30 appointment, Brett and I noticed a helicopter that was hovering the hospital and seemed out of of place since it wasn't landing. Once we got in and into our waiting room for my doctor, we jumped onto WiFi to read in the news what was going on. We couldn't believe we were right there. As we waited, we heard the news of Michael Jackson's death via Twitter. The helicopter sounds grew, and we were curious what was building outside. The nurses weren't really confirming anything, but it was obvious some were in the know.

After waiting almost two hours (my oncologist was fitting me in) we finally got to the exam with my doctor. My rash is healing, and the pain I am feeling and describing is my entire body growing a new layer of skin. She said two more weeks and I should be through the worst of it. She was very pleased with how I was healing, and my White Blood Cell counts, Hemoglobin and Platelets couldn't be more normal - I could donate platelets now if they'd let me! And then as we were about to get to some bigger questions, a fire alarm went off. We had to evacuate the building with the doctors and nurses and stand outside as the media frenzy was growing regarding Michael Jackson. I think a Paparazzi probably pulled the alarm as a distraction. Still, we had to wait for the fire truck and the all clear, within yards of the entrance to the hospital where Michael Jackson was.

In fact, after the little fire alarm, we found out that one of the nurses (the one who takes my vitals) was approached by a young black man as we were waiting for the all clear. He told her his name was Jermaine Jackson, Jr. and he needed help finding the entrance to the hospital, so she escorted him. She was just a few feet away, and we missed it! Once we got the "all clear", we went back in to finish my appointment. At that point, a lot of the nursing staff was confirming that Michael Jackson had indeed passed away. Not sure if we knew ahead of everyone else, but it was still shocking news to say the least. The good news about the rest of my appointment: I am still cancer free, and I no longer need to have blood draws at home! Yay!

Once our appointment was done, it was around 4:30, and Brett and I started to leave, hearing that streets had been closed and we may run into problems. When we got outside, we couldn't believe the change. Seven satellite TV trucks lined up and thousands of people with flowers, signs, etc. We decided that since we were thrust into the middle of it, we may as well get a couple of cell phone photos. It was amazing, it was almost like within an hour, thousands of people were there at the hospital. Here are the two photos I managed to take on my cell phone:





And of course, we had some more drama. As we tried to cross the street to take photos, I tripped over my flip flop and skinned up my arm and leg. It happened right in front of two paramedics and they did nothing. They must have thought I was some Michael Jackson fanatic. Brett was hoping to get interviewed so he could say, "Michael who?" He has such a sense of humor! We went back to oncology where they patched me up, and then we were finally on the way home.

We made it out of the parking the "back way" on Gayley very easily and hit some traffic on the way home. It was a long, strange day. But lots of good news amongst the sad news in Hollywood with Farrah and Michael. I hope they rest in peace.

My next appointment is in two weeks - I'll keep you posted! KCA!