Sunday, May 31, 2009

Thinking positive!

I'm still in the hospital, but am feeling much better than I had in previous days. My fever has been gone for two days in a row, and they determined the rash on my arms is from a Latex allergy. Now that they have been using different tape, the rash has almost cleared, except where my old IV line had been removed yesterday. The headaches are gone and my open sores on my mouth are healing. So things are slowing moving in the right direction.

As for my neutrophils, they remain at 10, which is better than zero, but not the 300 I need to bust out of here. So if you remember how to do it, please do the ANC (Absolute Neutrophil Count) dance for me! The doctors say my other levels are spiking which indicate I should have a big burst in neutrophils any day. I'm also good on blood and platelet transfusions, thank you to all that have donated. That means so much to me.

As for Jenelle, Brett is convinced that the women in our home want all the attention. Unfortunately on Friday Jenelle suffered a 20 minute grand mal seizure which required the use of Diastat to stop it. Brett was with me in the hospital, and we both felt completely helpless that we couldn't be by her side. Grandma Curran and Aunt Nicki met Jenelle at daycare after she had her Diastat they took her to Nicki's home. I was much more relieved when Marianne and Nicki told me that after a while she was wiggling and giggling like her usual self. Brett's biggest fear is both of us being in the hospital at the same time, and fortunately we kept Jenelle out of the hospital. Not sure why she had this seizure, but I will be emailing Dr. Shields to get his thoughts.

And just so you know Jenelle is doing fine after such a big seizure, here are some photos of Jenelle playing in her Challenger Championship game that were sent to me because I couldn't be there. She was clearly well enough to walk to first base on her own, when usually she is "out of it" for a day after Diastat. Great news.

Thanks for the continued thoughts and prayers. Please keep them coming and please keep doing the ANC dance for me so I can go home to hold Jenelle (and Jack and Brett). KCA!

Thursday, May 28, 2009

Turning the corner

Early last week, a friend from the Internet who had a blog I often read passed away. Her name was Deb, and you can read all about here at her blog, Debutaunt. I knew Deb had cancer, but didn't know what specific type of cancer. Then a friend told me it was Leukemia. It hit home a little bit. Deb was diagnosed with Acute Lymphoblastic Leukemia in 2005, had a bone marrow transplant, but relapsed right around the time I was diagnosed with AML in November.

Last week, I went back to read some of her blog entries, where her last post was in February. When she relapsed, her last posts pleaded with friends and readers to donate blood because she was unable to get transfusions she needed due to low supply. I mentioned this to Brett and talked about how fortunate I was to have so many donors when I was going through induction, and it seemed UCLA never ran out of blood.

Now you understand my shock when they had to delay my platelets the other night because they they didn't have my blood type. Thank you all who made the drive to donate, especially Michael Allen and Kim Estrada, who missed our boy's Championship Game to donate. Blood supply is critically low here in Southern California, so even if you aren't my blood type, please consider donating in my honor. I'd hate to think that someone in a more serious condition would be denied such a life saving thing.

As for an update on me, I've gone a whole day with a fever around 99.8. The doctors still consider that a fever because I do not have an immune system. The good news is I have 10 neutrophils today, so with the fever passing and signs that my blood levels are going in the right direction, I should recover in a few more days. I still have open sores, so outside visitors are still to be kept at a minimum.

As for that Championship Game, the boys won with Jack making the last two outs. He has a couple more tournaments coming up so hopefully I can catch some of those last games. He is doing well but misses me, and Brett says Jenelle is her usual "cute."

Thanks for the thoughts and prayers, please keep them coming! KCA

Tuesday, May 26, 2009

Need Blood and Platelet Donations

If you are in Southern California and your blood type is A Positive, I could use your platelets. I was supposed to get Platelets today but the blood bank was out of my type. I need type specific platelets as O negative gives me a rash. The nurse told me that the bank is critically low right now on blood and platelets.

To donate to me specifically, you have to donate at the UCLA blood bank on Galey. I'm sure they can use any type to help increase the bank, but it you donate and you are A positive, please ask that the blood/platelets be used for me at Santa Monica.

For more information, check out UCLA's Blood Bank website.

My fever is lower today, around 101.8, and I'm starting to get a rash on my arms, possibly from one of the new anti-biotics. I am getting two different IV antibiotics, one IV anti-fungal and one IV anti-viral. They are pulling out the big guns to get me through this. My neutrophils are still at zero so my body isn't helping much. I feel pretty crappy and am enjoying the Benedryl naps I get. I still can not have visitors.

Thank you for the continued thoughts and prayers. KCA

Monday, May 25, 2009

MRI Results

I got the results of my second MRI and it was clear for encephalitis. The doctor thinks my headaches are deferred pain from my mouth sores. The good news is that my white blood count went up slightly. I got some blood today and they added another medication to my routine. I still have a high fever (102 again today) and they are watching it closely.

Thanks for the prayers - please keep them coming.

High Fever and Infection

Just a quick update on me. It seems it was a good idea to admit me to the hospital on Friday, because I started spiking a fever Saturday evening. It's the kind of fever that starts with chills, then goes really high. Yesterday it hit 102.8. An Infectious Disease doctor was called in and she requested a second MRI and some tests, and also added a second anti-biotic and an anti-viral.

My first MRI from Friday was to make sure my mouth sores were not solid abscesses. Thankfully they aren't because I didn't like the idea of having to "lance" them if they were solid. The second MRI is to rule out encephalitis as I've been having horrible headaches.

I haven't been as stir crazy this visit because I've been feeling pretty lousy. I sleep most of the day. The doctors have advised as few visitors as possible because of my open sores on the outside of my lips. Right now we are fighting a raging infection and we don't need to add to it. My neutrophils are still 0 so my body doesn't have much of an immune system to help the fight.

If you wish to pray specifically, please pray that my fever subsides and that the antibiotics start to work. Thank you for the continued thoughts and prayers. I'll update more when I can. KCA!

Friday, May 22, 2009

Mommy is in the hospital

On Thursday, I had my blood labs drawn. Earlier that morning, I woke with some horrible mouth sores, something I hadn't expereienced with the past chemo. My Home Health Nurse was concerned, and said she would call me with my numbers later in the day. As it turned out, my blood levels were really low - I only had 8 neutrophils, and you remember from the past that isn't a good number.

This morning, the mouth sores were much worse and the left side of my face is swollen and painful. After consulting with my next door neighbor (who is an oncology nurse) I called my doctor and she wanted to have me admitted for IV antibiotics to treat the mouth sores and the swelling. With my low white blood cell count, a simple thing like mouth sores can get out of hand easily. I'm in a lot of pain so this time if feels safer to be here because I know they can give me the good drugs. Also, better safe than sorry.

Unfortunately they did not have beds at UCLA campus, so I am once again at UCLA Santa Monica. The nurses all remembered me when I arrived, and I got the biggest room with the best view overlooking the ocean. We hit Memorial Day Traffic driving up here and it took two and a half hours. As you can imagine, things work slowly in a hospital. I checked in at 5:30 p.m., and am still waiting for IV antibiotics at 8:45 p.m. I found out the delay is because they want an MRI of my mouth sores. Apparently I should be going any minute, which means another hour.

If my numbers start to rebound quickly as my doctor predicted they would with this round, I should be realeased after a few days of IV antibiotics. Not exactly how I wanted to spend Memorial Day Weekend, but at least I'm on the road to getting well, and I know this is the last chemo until I'm on maintenance meds.

Thanks for the continued thoughts and prayers. Please pray for a quick resolution to this infection so I can go home soon! KCA!

Wednesday, May 20, 2009

Video and KCA update

Wanted to share this video we took of Jenelle this afternoon playing in the back yard. She really seems to enjoy the slide.

As for an update on me, it has been more than a week post chemo and I'm doing OK. I was really exhausted last week and stayed in bed mostly from Wednesday to Saturday. Sunday was the first day I started to have some energy again. My home nurse says my counts are low, but not critical yet. We'll see how they do with tomorrow's blood draw. Also, for the first time I am experiencing mouth sores. That makes it difficult to eat. Oh well, soon this will be a memory. Thanks for the continued thoughts and prayers - KCA!

Tuesday, May 19, 2009

The Silence

The last two nights, I dreamed that I was having a conversation with Jenelle. Even though I can't remember the exact details of our conversation, it was beautiful dream.

In the first dream, Jenelle was older. We were sitting on some bleachers at a football game for Jack. I think it was high school football. I was so worried and scared. We were sitting really high in the bleachers, and I feared Jenelle would get wiggly and fall. Sensing my worry, she spoke to me and told me that she was going to be OK, and that she would sit quietly and watch the game. She really wanted to concentrate on Jack's game, to watch him make a touchdown. She kept reassuring me that she was OK. After a while, I realized she was older, and calmer so I let the worry fade away. I wondered if the ability to now speak and communicate with us helped to calm her.

In the second dream, Jenelle was the age she is now. We were in Arizona, visiting our friend Lily, and it was hot. Jenelle was very cranky, and was yelling at me that she was very hot. I was amazed that she could talk as was Kim, Lily's Mom. Kim and I decided that she had the ability to talk all along, and the cranky brought it out of her.

I know why I had these dreams, specifically the first one. The other day, I was sitting with my Mother in Law and Jenelle at Jack's baseball game. I was very tired from the chemo, so my Mother in Law was keeping Jenelle occupied. Jenelle is very strong, and when she gets excited, it takes a lot of strength to keep her contained. She was giving my Mother in Law a real work out. My Mother in Law said, "Oh Jenelle, what are we going to do with you when you get even bigger?" That thought has been a reoccurring theme all her life.

When Jenelle was a floppy baby and much like an overweight blob, I worried so very much about having to lift her dead weight in the future. But every time I would fear that once she reached a certain weight I would reach my limit, I became stronger. As did Jenelle. And as I grew stronger in my ability to lift her, Jenelle learned to sit up and walk. And with that ability to finally control her body, she helps us help her. Each time I fear the next stage with Jenelle, it has always worked it self out.

I know in my heart that even though Jenelle is silent today, that someday soon we will communicate. If she can master the word "mum", I know she can have more words. It will work itself out just like it did before. I think my dream was trying to tell me that once we find a way to break the silence and communicate with Jenelle, she will calm down and things will be OK. Speaking of silence, please go check out a recent post from Dr. Danielle where she talks about a different sort of silence we all fear as special needs parents.

It was a beautiful dream. And in my heart, I know it can happen someday.

Wednesday, May 13, 2009

Photos of Jack's First Holy Communion

Well, because we delayed my chemo for this special occasion, I thought I'd share the photos from Jack's First Holy Communion last Sunday. It was a really fun day because after the mass, Jack went to play a Little League game for his team which would help decide first place. His team won, and I told him it was because he went to mass! Anyway, here are some photos - enjoy!

Here we are with Jack in the parish hall waiting for the mass to get started.

This is the only photo we were allowed to take in the cathedral during the ceremony, after it was all done of course. Jack was front and center!

Here is Jack with Father Bill after the ceremony.

Here I am with Jenelle as she tries desperately to lead me into another direction.

This is a very excited Jack when he found out he had presents waiting in the car!
It was a wonderful day, and I was so very happy not to have missed it!

Tuesday, May 12, 2009

All Done with IV Chemo!

This afternoon I finished my final dose of IV chemo. Everything went really well, and the nurse got an IV into a good vein. I got to keep the IV site overnight so they didn't have to poke me again today. My doctor says I should feel OK in the next few weeks and hopefully avoid the hospital again. Keeping my fingers crossed that is the case. Once my numbers rebound, I will then start chemo maintenance pills. I'm told I'll be on those for two years.

Thanks for the continued prayers. We are finally seeing the light at the end of the tunnel. I'll keep you posted. KCA!

Wednesday, May 06, 2009

The Final Round of IV Chemo starts Monday

UCLA called yesterday to inform me that my final round of IV chemo was approved by my insurance and scheduled to start on Monday, May 11. This time I will be getting Idarubacin (the red devil) in a much smaller dose for two days. We're hoping again to allow me to stay home in isolation as much as possible as opposed to another hospital stay.

My home health nurse came by on Monday to draw labs. The infection around what was my PICC line site is clearing up, but it took quite a while. The nurse said she left my house that day feeling like we had done the right thing. I agree. She said that if my counts had been low, I most likely would have had a blood infection landing me in the hospital for weeks, or even dead. My body is still really itchy, especially around the old PICC line area. The nurse and I think this is just a reaction to what happened.

And now I have another photo to share on the hair growing progress. I think you'll be impressed ...

Hee hee, just kidding. This is my new wig which I finally got from my hair stylist last week. I wore it to Jack's Little League game to try it out and the wind kept blowing it in my face. It will take some getting used to, but will be nice to have when I feel I need more hair.

That is all for now! Thank you for the continued prayers - KCA!

Friday, May 01, 2009

Blogging Against Disabilism Day 2009

This is my 4th year participating in Blogging Against Disablism Day. Disablism is a term used to describe discrimination against persons with disabilities. The main focus for Blogging Against Disablism Day is to point out some of the challenges that face individuals with disabilities, as well as to raise awareness about various disabilities. To find links to read and enjoy the post from others in support of Blogging Against Disablism Day 2009, please go here. Click on the year to read my previous posts from 2008, 2007 and 2006 . To understand more about the term "Disablism", please read the piece, "One in Seven" by Lady Bracknell.

On November 26, 2008, the word "disability" took on a whole new meaning for me. On that day, I joined the ranks of the disabled when I was diagnosed with Acute Myeloid Leukemia/ Acute Promyelocytic Leukemia. Up until that time, when I thought of a person with a disability, I thought of my daughter, and others just like her. In the past I've written about how disability from the point of view of seeing its affect on my daughter. How her seizures often scare people, and the difficulty in finding normalcy in our lives. Now I have a greater understanding of how a disability can effect everything about a family in a very sudden and different way.

Disability for me right now means no work. No pay. State Disability pay. Paying more money for medical insurance. Lengthy hospital stays. Isolation. PICC lines. Bone Marrow Biopsies. No hair. No strength. In many ways it is different from Jenelle's disability, and in some ways it is the same. At least with my disability, there is the promise that it is not forever. My cancer is in remission. Once I finish chemo in a few weeks, I will return to work. Soon life will return to normal for me, or as normal as it can get as the parent of a child with special needs. My small glimpse of being a part of the disabled community has changed me for sure. I know that I will leave it with a better understanding of Jenelle.