Friday, July 31, 2009

hang on a second...

So, we're now on hold to start the chemo meds. On the morning of my appointment on Thursday, I woke with some itching on the inside of my arm. I mentioned it to the doctor, but we both thought it was subconscious since I didn't have any symptoms prior to this. Well, now I'm itching on the inside of both arms, and I have red bumps on the right arm. I spoke to the nurse practitioner just now, and she instructed me to increase the Predisone and hold off on the chemo meds until we could talk to the doctor on Monday. Obviously if it gets worse, I am to call her back.

I'll continue to keep you posted. Hopefully this is a minor delay. KCA

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

Saturday, July 25, 2009

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! ;)

Monday, July 13, 2009

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!

Friday, July 10, 2009

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!

Thursday, July 02, 2009

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!