Monday, June 29, 2009

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!

Thursday, June 25, 2009

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!

Thursday, June 18, 2009

What a long strange trip it's been...

Kelly here. We had a follow up with my oncologist today. She really wants to watch this rash to make sure things don't get out of hand. I really don't remember a lot of what happened in the hospital, but my doctor said it was quite serious, and I'm very lucky.

As you know, I was admitted on May 22 for infected mouth sores. When I started to spike a fever of 104.8, I was very scared. Scared for my life. They threw a lot of meds at me, and it worked and the fever went away. A few days later I started to get a rash, which they assume was from one of the many drugs they had me on. And then I hit a fever again of 104.8. We found out that I'm very sensitive to drugs, and we now know I'm allergic to Latex. Brett and my Mom tell me there was a point when my sodium level was down, and my kidneys were not working well. My heart rate also dropped very low. I was hallucinating, and I really don't remember any of it, but my Mom says I didn't stop talking. At that point, I was moved into more of an ICU type room for a few days. My fever was gone for a good 4 days, but the rash (as you've seen in photos) was worse, and is very painful in my joints. I am using morphine every 4 hours for the pain.

The hospital decided with my fever gone, it might be best to rest at home with the rash, so as not to risk any infection I could get at the hospital. My biggest motivator in agreeing to go home was that they would stop poking me for blood draws. Remember, I don't have a PICC line anymore, and they had to change my IV site every 5 days to avoid infection, and of course I was poked every morning for labs, cultures, etc.

I'm doing well at home. Still in a lot of pain, but resting and eating better.

Thank you all for the prayers. This last hospital was frightening to say the least, but at least now I know I will survive. I'll update again when I can. KCA!

Tuesday, June 16, 2009

Kelly is home..

Kelly got home late last night and went straight to bed. She is still very tired. She is walking much better. The kids were very excited to see her. Jenelle saw her and had the giggles for 10 minutes. She was very excited to see mommy. Jack really enjoyed saying goodbye to mommy this morning. The smile on his face was priceless. He couldn't be happier. We have an appointment next week to see if the cancer is gone. We still have a couple more big steps. Thank you to everyone. You thoughts and prayers have been very helpful. KCA/KRA

Sunday, June 14, 2009


Kelly's fever went back to 103 on Friday and has been back below 100 since. So we do have some progress. Kelly is starting to eat a little more, for Kelly that isn't saying much. She still gets tired walking to and from the bathroom, which is about 6 feet from her bed. The rash seems to be getting better. I do have pictures of the rash that I will try and post when I get them off my phone. Not sure you want to see them. I don't. But it will give you an idea of what she is dealing with. Jack really misses his mommy. Asked me every day when she is coming home or can he call her. My guess is she can come home by the end of the week. YEAH!!! We will KCA!!! Now we just need to kick the rash's... And she will. Go Kelly, go Kelly, go Kelly...Below is the picture. Keep in mind she has this rash from head to toe.

Thursday, June 11, 2009

Fever down..

Kelly's fever has been below 100 for 36 hours. That is great news. The doctors have said the rash is not chicken pox. They believe it is a drug allergy. Then why do they keep giving her drugs? The rash is still nasty. The biopsy came back negative. She still can't walk without help. She is sleeping most of the day. Her sodium, potassium and magnesium are still low. At least her fever is down and if it stays down she should start to rebound quickly. On a side note Jenelle has had a couple of really bad seizures. She had to be sent home from school today because she had a 5 minute seizure. I don't think she likes mommy getting all the attention. But the fever being down is good news. And we will take it. I found a Cold Stone within walking distance. So Kelly wants ice cream for dinner. Sounds good to me.

Tuesday, June 09, 2009

Kelly update..

Daddy here, Kelly asked me to give everyone an update. There is so much to cover I don't know where to start. Over the weekend the hives got worse. They have covered her entire body. Her fever got worse. It got as high as 104.8. The fever went up and down between 104.8 and 100 for the past 6 days. She had the shakes so bad they gave her morphine and Demerol just to get her to relax. Then they gave her an overdose of narcotics over the weekend when they added adavant. Which put her into a kind of mental coma for 4 days. She was very incoherent. Not completing sentences and talking in a strange language. She still isn't sure what day it is. They put her on 4 different types of antibiotics. They don't know what they are treating. Her sodium & potassium levels got so low they got concerned about her organs failing. Not sure if that was a possibility. Over the weekend her heart rate dropped to 65 over 40. I think. I was scary low. That combined with everything else scared me to death. Her heart rate is back to normal as are the other things. They did a biopsy of her rash to see if it might be chicken pocks or shingles. They started treating it and she started to have a reaction to that medication. They have done 3 x-rays, 3 CT scans and an MRI to see what is wrong. Nothing so far. Sounds like our daughter. She is speaking much better today. Still very tired. The nurses have been incompetent to say the least. There have been more screw ups then I can count. She is constantly talking about her death and funeral. I miss my positive wife. I am sure she will be back to bossing me around telling me what I am doing wrong in no time. The normal wife I know and love. Sorry to be such a downer, but I thought you should know what is going on. We need a break here. Thank you for all the thoughts and prayers.

Wednesday, June 03, 2009

High fever and hives

In the last two days my fever has been as high as 103.8. Today it is a little lower around 101. Unfortunately, I started getting hives this morning - not fun. Needless to say, I'm miserable, and still in isolation.

Please keep those prayers coming! Who knew this last round would go with a bang!

Monday, June 01, 2009

Spoke too soon!

This morning I woke with a low grade fever of 100.8. At the last vitals, it was 101.8. The doctors ran some more blood cultures and want to watch it for now. The good news is that my neutrophils are at 200, but they won't release me now until it hits 500 and the fever subsides. The doctors think I just need the boost of my immune system to help get rid of the fever.

So please keep doing the ANC dance, and pray for this fever to subside. Thanks for the continued thoughts and prayers. KCA!