Thursday, December 24, 2009

Merry Christmas!

I sat in church tonight and said many prayers. What a year it has been, and even though we've been through hell, I can't help but be thankful.

Thankful for humility - as I lost my hair, and scarred my body with rashes and needle pokes, and as some days I struggled just to have the strength to get out of bed.

Thankful for pain - because without feeling something, the experience wouldn't be real.

Thankful for time - the added time I spent with Brett, Jack and Jenelle. The days in the hospital with my Mom, and best friend Erin. The time to realize the important things in life.

Thankful for the difficulty - because if it hadn't been difficult, I wouldn't have learned as much from it.

Thankful for health and happiness - the new look on life, and the new ways in which I appreciate my body.

In church tonight at Christmas Eve mass. We sat in one of the last rows as a family. As the church sang Silent Night, it was our turn for Holy Communion. And together, as a family, we walked to the altar. Jenelle walked to the alter - holding Brett's hand and my hand. And as I sang, I got a little emotional. We've struggled so much, and yet here we are - healthy and thankful, walking with our amazing little girl to share in his love.

Merry Christmas. Thank you all for the love and support this past year.

Tuesday, December 22, 2009

ONE YEAR~



Today is my official anniversary of being cancer free! ONE YEAR!

KCA!

Thursday, December 17, 2009

Hair... one year later

One year ago today, I looked like this...



And today, I look like this!



KCA!

Saturday, December 12, 2009

Neutrophil watch

I wasn't going to mention anything, because I assumed it would return to normal by now. Apparently, my neutrophils took a huge dive shortly after Thanksgiving when I caught that cold virus from Jenelle. The anti-biotic worked well, and I've been feeling fine with no cold symptoms, however when my labs were drawn at my last appointment at UCLA (on Dec. 2) my neutrophils had dropped to 700. Apparently the virus, along with chemo meds took a real shot to my immune system.

I had a message on my answering machine last Friday from the oncologist instructing me to stop all chemo meds. I called them back and actually got the nurse on the line. I was actually getting dressed to head out the door to go to Disneyland that night to enjoy the Christmas lights. When she told me my neutrophils were 700, I asked her if it was OK to go to Disneyland and she said absolutely not! She told me to be careful and to avoid sickies, but 700 had me concerned as anything below 500 and I'd be back in the hospital. Never mind that I had taken Jenelle to the Pediatrician the day before, or that I had just come home from my firm's Holiday party.

I had my blood re-drawn on Wednesday this past week and have been waiting for the good news. I spoke to the doctor yesterday, and my neutrophils are still low at 1,200. But they are headed in the right direction! They are going to keep me off chemo another week until it returns to normal. I can still go to work, but need to be extra cautious and avoid schools and sick people. I have to have my blood re-drawn this coming Wednesday.

Always better to be safe, and I can't imagine we've had a lapse in washing our hands this time of year. All I know, is that I am much happier and healthier than I am a year ago, and that keeps a smile on my face. No need for a neutrophil dance, but if you could send a positive thought that they keep increasing, that would be wonderful.

I'll keep you posted - and keep smiling! ;)

Friday, December 11, 2009

A new lease on life

I can't help it, but I smile a lot more these days. I smile to myself in the car. I smile at people in the grocery store. I smile on my way to the printer at work. I smiled at 10 homeless people sitting outside the County Recorder's office this morning. I even offered a cheerful "good morning" to one man who actually gave me a smile in return. I'm smiling as I type this right now!

It is said that people who survive a life changing experience such as cancer often experience what they call a new lease on life. While the optimist in me wants me to think my whole cancer thing wasn't really that big a deal, I do realize it was. And that I came very close to dying.

So without fully embracing it, I have noticed subtle changes in myself for the better. Like smiling, and laughing, and striking up conversations with strangers. I find myself being more patient and not so hung up on the little things. At work I feel much more organized. I'm even happy to be at work and absolutely love what I do. It's a fresh start. A new lease with life.

As a survivor, you want to teach this to others, and share this happiness with the world. But sometimes there are people who simply can't change. I wouldn't wish for anyone to have to experience cancer, but for those who survive, there are silver linings and hidden gifts. And for even the most positive people, like myself, there are always new lessons to learn about happiness.

Try to find a new lease on life for yourself, without having to experience cancer. Try smiling more - it helps. Always be thankful for what we have in this world, because it is so very special.

Thursday, December 03, 2009

Another follow up at UCLA

On Wednesday I drove up to UCLA for another follow up with my oncologist. Things are great and I'm still cancer free! Over Thanksgiving, Brett, Jenelle and I came down with a cold. Jenelle started first with a clear runny nose, then I started to have it as well. My cold started to look like a sinus infection by Sunday, so my oncologist placed me on an anti-biotic. It worked well and I am doing fine.

My doctor still wants to keep me part time, but was OK with my increasing my work hours a bit. I've been able to work four, 7 hour days a week with Fridays off. When I asked about full time, the doctor reminded me that I was on an anti-biotic for a cold. Clearly, even though my mind is ready to do more, my body says to keep it slow.

As you can imagine, the cold has not been pleasant for a child like Jenelle, especially when she can't blow her nose. In the last day, the runny nose got worse and I took her in this morning to see Dr. Patel. Yesterday I insisted to the nurse Jenelle only had a sinus infection and that all she needed was a Z-pak. The nurse insisted the doctor needed to see her and it goes to show me, I'm no nurse; Jenelle has a sinus infection and an ear infection! Poor thing. She is now on a more powerful antibiotic and cough syrup. Hopefully she'll be back to her happy self this weekend.

Thanksgiving was thankfully uneventful this year and we really enjoyed sharing our desserts first the night before. After my appointment at UCLA on Wednesday, I walked over to the hospital and went up to the 6th floor oncology unit where I spent most of December last year. I spoke to a nurse at the nurse's station and dropped off a Christmas card/thank you note. She didn't remember me at first because last year I had "blond" hair, but said the best part of her job was seeing patients like me return to say thank you.

I peeked into my old room, which was empty, and reflected on how different things are this year. What a blessing to have a new lease on life. Thank you all again for your prayers and support. Things are so much better this time, this year.

Sunday, November 22, 2009

I have a confession...



(I wrote this 5 years ago for my Aunt Onie)

I have a confession. I'm 35, 36, 37, 38, 39 years old, and I've never cooked a turkey. It looks like I'm not going to start this year either. I was never really the one to get up early on Thanksgiving morning and help my Mom with the bird - that was my sister, who now cooks a bird for her family. Then again, I sometimes feel like I'm missing out on something special.

The older I get, the more I feel I've become more like my favorite Aunt Onie. She is an amazing woman, but to my knowledge, has never cooked turkey on Thanksgiving. At least not for me. Aunt Onie and her family always came to our house for Thanksgiving and always made things fun. Her contribution was to buy the turkey (for my Mom to cook), bring the olives, a chocolate khaluah cake, and the Jack Daniels. Thanksgiving dinner was always early afternoon and always planned around football.

One Thanksgiving when I was about ten, my sister asked my Mom (in front of my Aunt) why we didn't go to my Aunt's house for Thanksgiving. I chimed in loudly and said, "Because everyone knows Aunt Onie can't cook!" Little did I know what a jab to her pride that was, being from the South and all! That year, we had Christmas dinner at Aunt Onie's house where she made an amazing roast and put out any ideas in my head that she couldn't cook. My sister and I decided it was easier to have everyone at our house (so we could play with our toys) and that was the last time we ever had a holiday at Aunt Onie's. Even now when my Aunt Onie sends me a card, she always writes beneath her signature, "and everyone knows I can't cook!"

So, while fearing that I've become a failure in life for never having the honor of cooking the bird, in my infinite wisdom I realized that I am now my Aunt Onie. I'm somewhat proud of this distinction because she is someone I admire so much. She taught me love, loyalty (she is to this day a die hard Rams fan, much like I love my Angels) and how to be a working woman in a man's world. I recently asked her if she was still a Rams fan, and she replied, "I'm still breathing aren't I?"

The most important lesson I think she may have inadvertently taught me is that it is not important to be the one to cook a turkey on Thanksgiving. We can add to the day with the dishes we bring, the spirits we share and the knowledge that we could make the damn meal if we really had to! And the ultimate secret that no one brags about is that when you aren't the cook, you can enjoy the day and still go home to a clean kitchen!

So, I am my Aunt Onie, and I can take pride in the fact that I have never cooked a turkey. Heaven help us all the day I do!


Happy Thanksgiving!

Wednesday, November 18, 2009

Anniversaries and Thanksgiving

Type the word "Anniversary" into the search engine for this blog and you will find many posts from the last 6 years about Jenelle. The first anniversary of the day we found out she was having seizures was the hardest, as was the second anniversary that followed. During that time we had no idea what was going to happen with our girl, and we were living moment to moment. Over time, the anniversaries have gotten easier. In fact, it wasn't until I started typing this that I realized we just passed 6 years for Jenelle's seizure diagnosis.


Next week, another first anniversary is coming. Next Wednesday will be one year from the day of my cancer diagnosis. Not only is it a specific date, it is the day before Thanksgiving, so it reminds us of a difficult time for the entire family. Last Thanksgiving, Brett and I did not attend.

People have been warning me that this anniversary was going to be tough, that everything may hit me all at once. But in all honesty, I think it's going to be OK, because it's a different kind of anniversary. Instead of a reminder of something horrible, it's a celebration because I am still here. And just when I start to think that this is all about how I'm going to handle it, I realize there are others to consider.

Recently, Jack has been having some difficulty sleeping at night. A few nights ago, I went in to his bedroom to talk to him it about it. I asked if something was bothering him and at first he hemmed and hawed and said "No, I'm just really nervous about something." After quizzing him about school, sports and other things being the cause of his nervousness, I finally said, "Jack, Thanksgiving is coming next week and we'll have some time off to be together without school and stuff. It will be fun, don't worry!" And Jack responded, "Well Mommy, that's what makes me nervous. Last year you weren't there for Thanksgiving. Are you sure you're going to be there this year?" "Absolutely" I promised.

I now realize, I'm not the only one going through this cancer thing. While I may always be positive and optimistic, not everyone else feels that way and it may be tougher for someone else. So as a celebration of my diagnosis anniversary, we're going to eat our "desserts first" the night before with special friends. Because life is too short to skip dessert because you stuffed yourself with turkey on Thanksgiving.

Happy Thanksgiving to you all. Thank you once again for your support and for the many prayers for the Curran family this past year. We couldn't have survived without you.

Monday, November 09, 2009

Photos to Share & Updates

Lots of you have been asking and wondering why I haven't updated recently. Well, life is getting busy for us in a good way. I have more energy each day, and the kids are as busy as a 7 and 8 year old can be. Things have been great. Busy, but great!

Jenelle is doing well since getting staples in her head for her birthday. We had them removed last Monday and had a delayed cry, but did well. The cut healed nicely and did not get infected. Jenelle continues to amaze us with eating and walking. It seems she gets stronger each day. Two weeks ago, Jenelle's teacher called me to inform me that Jenelle "purposefully" used her "Bathroom Switch". As you may recall, Jenelle's teacher has installed a switch button that when activated by touch says the word "bathroom." To help instill the potty training, Jenelle's teacher has Jenelle press the button each time they take her to the potty. A few weeks ago, Jenelle was sitting in circle time. She got up out of her chair, walked over to the button, pressed it, then went to her teacher and put her hand on her shoulder. The teacher then took Jenelle to the bathroom across the hall, where Jenelle went potty on the toilet! Exactly what we've been hoping she'd do! Now we need to get a potty button at home!

As for me, I was at UCLA last week for another follow up. After decreasing one of my chemo meds, my blood work numbers have been great and my immune system is stronger. I started my round of ATRA (vitamin A) and will be taking a 15 day course. This is the one I have to take every three months. The doctor still wants to keep me on a part time work schedule. She is more concerned with the flu that is going around, and feels I will be part time until at least the end of December. As for work, I am really enjoying it and getting back into a routine. Slowly I've been able to work longer days and really feel I'm not pushing myself. I think my doctor's estimate is right, and I should be back to full time at the end of the year. Oh yes, and I'm still cancer free! ;)

Now for the photos... As I told you, we've been busy! Enjoy!


Here is our new 7 year old with a small cake on her actual birthday (a Thursday this year.) As we sang to her, she smiled!

Here is Jenelle at the small party we had with family. Grandma was holding her hands so she wouldn't grab the candles.

Jenelle enjoying some special time with Poppa George as we passed around the cake. Poppa George and Nana drove down from Visalia for her party.


On October 23, Jack and I waited in line for 3 hours at Barnes and Noble in Santa Ana to meet Jeff Kinney, author of the "Diary of a Wimpy Kid" books. Jack was so excited, and really loves the books. We are excited and thankful that these books have sparked a love of reading for him.


Jenelle was Tinkerbell for Halloween this year. As Jack ran door to door with friends, Grandma and I took Jenelle trick or treating. Our next door neighbor didn't recognize with with my new hair. Jenelle walked well and did half the street without her wheelchair. The neighbors were excited to see her.



Here is our Tink cuddling with Aunt Nicki.



And this is the only photo I got of Jack on Halloween. He was a man eating shark. Because he used his sister's shoes as a prop, he told his classmates the shark was eating his sister!


Football season has come to an end and the football banquet was last Thursday. Jack and his team had an awesome year and he really improved.


Last Saturday, Jenelle and her Challenger Baseball Friends from Tustin Eastern Little League got to participate in the 4th Annual Challenger Classic at Angels Stadium Grandma came along to help me. Here we are on the field with Jenelle!


Here I am enjoying the Visitor's dug out with friends Barbara Kibby and her son David Kibby. Barbara is a die hard Yankees fan (from New York) so she was basking in the "Yankees" dug out as she liked to call it.


Here is our team posing for our team photo. We had some pretty special celebrities join us including Fox Sports Broadcaster and former Angels player Rex Hudler (bottom left) and former Angels player Bobby Gritch (last row on the far right.)



And finally... a special photo for me. All season, Brett and I contemplated trying to take my photo next to this MLB "Stand Up To Cancer" sign (which is right next to the left field foul pole), but we never got around to remembering to do it when we went to a game. Finally, I got the photo - thanks Steve Polley!
So, as you can see... we've been busy! ;)
Thanks for the continued thoughts and prayers. We'll keep you posted.











Sunday, November 01, 2009

Talk About It! NEAM 2009


November is National Epilepsy Awareness Month!
Purple is the color for Epilepsy.


According to most recent estimates, seizures and epilepsy will develop in 200,000 otherwise healthy Americans of all ages this year.

In 1995, the last year for which complete data are available, 2.3 million Americans had been diagnosed with epilepsy, had been taking anticonvulsant medication for at least five years, or had experienced an unprovoked seizure (a seizure not associated with an acute nervous system insult such as high fever, infection or head trauma).

Of these 2.3 million, 1.4 million were adults aged 15 to 64 years and 550,000 were citizens aged 65 and over.

Most poignant, 300,000 were children aged 14 years and younger-children in the prime of life and at a crucial stage in their educational and social development.

Almost 3 million Americans now have epilepsy.

~~~~~~~~~~~~~~~

Not a day goes by that I don't think about seizures. Is today the day Jenelle has a big seizure? Is today another day where she won't have a seizure? Will today be the day Jenelle's seizures change? Epilepsy is like the 5th member of our family. We live with it daily, but it doesn't control our lives or what we do with Jenelle.

Jenelle is who she is because of her seizures. Her seizures have left her mentally retarded and developmentally delayed. She has lost her chance at a normal life because of her seizures. To help Jenelle have a better life, we talk about her Epilepsy as much as we can, so people can understand why she is the way she is. We try to help parents going through the same thing. We advocate for a better life for Jenelle.

Talk About It! is a new organization spearheaded by Actor Greg Grunberg who is the parent of a child with Epilepsy. Greg has organized all of his Hollywood friends to help spread the word about Epilepsy. I couldn't say it better than the website, so please visit Talk About It.Org for more information about Epilepsy.

Wear purple, donate to your local Epilepsy group and most important... TALK ABOUT IT!

Every moment lost to seizures is a moment lost in brain development. Help us fight this monster from stealing precious moments in development from our little girl.

THANK YOU!

Thursday, October 22, 2009

Happy 7th Birthday Jenelle!

As I was uploading the video below to share for Jenelle's Birthday today, I heard a huge "thud" in the hallway. Apparently, Jenelle fell into the door in the hall, and that is not unusual for Jenelle. A few minutes later, Jenelle sat in front of Brett (who was sitting on the couch) and all of a sudden, he noticed blood running down her back. Jenelle had split the back of her head open.


Given that Brett cannot lift her right now because of his shoulder surgery, I took her to the ER, where Grandma met us to help me. It was not a good night for the ER. We signed in at 9:30, and didn't see a doctor until 1:00 a.m. I joked with the nurses that the wait was so long, Jenelle arrived when she was 6 years old, and left when she was 7!


After a lot of Lidocain, the doctor put in 6 staples. Jenelle giggled through the process. In all, she never cried or showed that she was in any pain. This child is truly remarkable.


I'm sure Jenelle didn't really want staples for her birthday, but so far that is her first gift. In honor of this special day, I wanted to share some recent video of Jenelle giggling. And just for fun, I have a photo to document her ER experience this evening. As you can see, she is all smiles. Thank you for all your thoughts and prayers.


Happy Birthday Boo - We love you!

video


Monday, October 19, 2009

Busy days and a Follow Up

Life has been extremely busy lately. Illness, sports for Jack, surgery for Brett, and a trip to UCLA for Jenelle... not to mention increasing hours at work for me.

Last Tuesday, Brett had routine shoulder surgery for a rotator cuff tear. Originally, the doctor thought his recovery could be 6 months or longer. As it turns out, the tear was not as bad as he originally thought. Brett's recovery looks to be 4 to 6 weeks now instead of months. Finally, some good news health wise. Brett did well with the surgery, other than having an adverse affect to anesthesia. He's having some pain, but is doing well.

I had my follow up blood draw last Monday. It appears decreasing the Methotrexate did the job and my neutrophils are back up to a better level. I've been doing well and am trying to fit in more hours in my work day I'm not needing naps as much, but still get tired. Trying not to "over do" gets more difficult when life slowly gets back to normal. Taking care of the kids and working is pretty much a full time job.

On Sunday, the family participated in the Children's Hospital of Orange County Walk in the Park at Disneyland. We were able to get there on time (at the crack of dawn at 6:30 a.m.) and only walked half the walk so as not to tire me out. After the walk we ate at IHOP, then went home where I took a 4 hour nap. I must have needed it.

And today, I drove Jenelle to UCLA by myself for a follow up with Dr. Shields. Jenelle's appointment was at 1:00 and we had tickets to today's Angels game against the Yankees at 1:15. Last Friday, I called to try to reschedule, but was told that Dr. Shields was going into "semi-retirement" and we had the only appointment left on his last day. Not wanting to miss seeing Dr. Shields, I told Brett to take a friend to the game and we didn't reschedule. When I told Dr. Shields that he was better than tickets to the Angels ALCS game, he told me he would have cancelled his appointments and gone with me instead! In all these years that we've been seeing Dr. Shields, I never knew he was an Angels fan! No wonder we love him so much!

Jenelle had a great follow up. Dr. Shields agreed it was a good idea to try to get Jenelle onto liquid meds so we could eventually get rid of the g-tube. As it turns out, his "semi-retirement" means that he will be taking the rest of the year off, and returning next February to a part time schedule. He would like to stay with Jenelle as long as possible, and that is just fine with us. As always, he was very proud and impressed with all that Jenelle is doing.

Traffic up to UCLA was really light. We got there early, so Jenelle and I had a slice of pizza (her new favorite meal) in the hospital cafeteria. As we walked out, we ran into my oncologist. She was confused when she saw me because my next follow up isn't for another two weeks. Once I explained that Jenelle was seeing her doctor, she was very happy to meet Jenelle. What a wonderful place this has been for our family. We have so much to be thankful for at UCLA.

Thank you for the donations to the CHOC walk, and for the continued thoughts and prayers. I'll keep you posted.

Thursday, October 08, 2009

Seven

Recently, I was playing around with the settings on this blog, and decided to change the Archives on the right side to a "hierarchy" setting (a setting that shows the years and numbers of posts instead of the scroll down menu I was using.) I thought to myself that showing the years of entries that I've typed into this website would make me look like a more accomplished writer. Like a more reputable blogger since I've been doing it for a few years. Then, I counted the years listed on the Archives section. Seven years. And it hit me. Our little girl is going to be seven years old.


As we began this journey with Jenelle when she was just six months old it was hard to imagine age seven. Instead of seeing all the entries I've made here as a testimony to my own personal writing skills, I realized that we are looking at the very seconds, minutes, days, months and years of Jenelle's life. In seven years, we have had heartache, denial, acceptance, tears, happiness and triumph. Every letter, every comma, every word and every paragraph is a moment in her life.

Sharing her life on this blog, with all the positives and negatives, has been such a blessing. Writing has always been therapeutic for me, but knowing that Jenelle's story brings hope to others makes me feel like the heartache is worth it somehow. I hope you all know that sharing her with you helps me cope, and helps me survive.

I've always been an optimistic, glass half full type of person. You can't teach that kind of attitude, sometimes you just have to be born with it. But a positive attitude helps one survive raising a child with special needs. And instead of dreading the worst, we celebrate the best. Because you have to realize that Jenelle's life is a gift to us all. She is a miracle, and I couldn't be more proud.

Monday, October 05, 2009

Another visit to UCLA

I had a follow up appointment today with my oncologist at UCLA. Jack did not have school today and decided to tag along for the ride. He wore his UCLA sweatshirt and was hoping to see quarterback Kevin Craft on campus. It sure has been fun spending time with him and I was glad he came with us, so he could see the place and meet the doctors who have helped me get better.

The visit was a good one, except that my neutrophils are very low and my white blood cell count is borderline low. Brett and I have been fighting a sinus cold that has been going around and he has had it worse than me. Last week Brett was in bed three days with a fever of 102, sore throat, stuffed sinuses and a cough. I had the sinus and cough, but no fever. The doctor thinks that my counts are low because of my chemo meds, so she wants to lower them and re-test my blood next week. Also, because of the low neutrophils and with me fighting off this sinus thing, they put me on anti-biotics.

Jenelle has been doing very well these days and is eating everything possible. It is like she finally understands that chewing will allow her to eat more interesting foods. Last week's menu included pizza, popcorn, ground beef, French toast and pancakes! She loves food! Jenelle has an appointment coming up in two weeks with Dr. Shields. We plan to talk to him then about switching to liquid seizure meds to see if she can tolerate swallowing them. If so, we may start considering removing her g-tube in June when we see her GI doctor. What a milestone that would be! Right now, we've only been using her g-tube for medicine because she is eating well and drinking most of her formula from a straw.

Jenelle had her annual IEP last week. She accomplished 8 out of 15 goals from her last IEP! she continues to improve in every area and we couldn't be more proud of her and the team of teachers that work with her every day. We love the results we are seeing.

That is all for now. I will keep you posted on my lab work next week. Thank you for the continued prayers.

Tuesday, September 22, 2009

New Normal, New Habits

With Jenelle, we've always been adjusting to our "new normal" as we like to call it. Whenever Jenelle meets a new milestone, or has a set back, it changes our normal routine. And thus, we experience what we call a "new normal. Lately she has been really thriving, and our "new normal" gets easier and easier.

During my first week back to work, the new HR manager at my firm told me to start making "new habits" for myself. "New habits" to be healthier. I've kept those words in mind each day as I slowly adjust to the new schedule. My new habits include drinking more water, eating healthier, and listening to my body when it tells me it needs a nap. I can't help but compare the phrases "new normal" to "new habits." In many ways, they sound similar, but are very different. "New habits" can be made for yourself, while a "new normal" is a change you adjust to. I think the "new habits" are easier.

Like I said, Jenelle is really thriving, especially in her eating. She is really chewing more, and able to tolerate more foods. Her menu now includes pasta, beans and rice, chopped chicken or turkey and pizza! All of these items have to be cut into small pieces of course, but she is chewing and handling it very well. Instead of pureeing lots of veggies for her, I now give her mostly what we are having mixed up in a bowl. This weekend she also grabbed my fork and fed herself. She sure loves her food!

Jenelle is also adjusting real well to first grade. She enjoys using the adaptive switches to play computer games at school, and is being taught to use a switch that activates a voice that says "bathroom" whenever she has to go! Her progress has been amazing, and each day we are so very proud of her.

Jack is doing well in 3rd grade, and is very busy with football and Fall baseball. I hope we don't burn him out, but he sure does love his sports. If there can be one blessing to come from my having cancer, it was the opportunity I had to spend the summer with Jack at home while I was on disability. There are so many times that his needs are thrust to the back burner because of Jenelle. I think he really enjoyed our special outings together. He has matured so much this year, and is such a joy. I am so thankful.

Finally, some photos to share. The first is of Jack on his first day back to school. I think he's getting too old for photos at the desk.



This adorable photo was taken on Brett's birthday. The timing of Jenelle's smile was just perfect.

Here we have Jenelle all ready for her big brother's football game! It is really cool that Jack was #1 last year because now it is the perfect jersey for Jenelle to wear to the games.

Here is a photo of Jack as he fell asleep in the living room clutching his UCLA football. He plays till he drops!

And finally, a new hair update! A few weeks ago I went to my stylist, Chaz, to cut off the fuzz and add some color. I'm learning to style the curl and like the lighter color. I just hope it grows faster in time for my driver's license photo in January!


That's all for now. Thank you for the continued prayers! I'll keep you posted!

Monday, September 14, 2009

Slow and easy wins the race!

I started back to work last Wednesday and had 12, 477 emails to sort through on my first day. By Friday, I had that amount down to 298. I am working a part time schedule of 4, 6 hour days a week with Tuesdays off. I take my chemo pills on Monday night and find that I am usually very groggy and tired on Tuesday. So far, the schedule works well. I get in early and get home in time to get a quick nap in before getting the kids.

It has been wonderful to get back to something normal. I am listening to my doctor and taking it very slow. I was tempted to take home some work last week and decided to force myself to rest. As they say, "slow and easy wins the race" and thankfully I have an employer who understands that concept.

The kids are both back to school and we are all falling back into the old familiar schedule. Brett's surgery that was scheduled for today has been postponed because his doctor has the flu. I think that is a blessing because I wasn't ready to start lifting Jenelle to much.

Thanks for the thoughts and prayers. I'll keep you posted.

Thursday, September 03, 2009

Full Circle

Brett and I took the old familiar drive up the 405 today for a follow up appointment with my oncologist. Prior to seeing her, I had to have a blood draw. Today for some reason my body and veins decided to be difficult, and it took 45 minutes and 4 pokes to find a good vein. My oncologist told me it was time for some arm exercises to help build up my veins.

While I was sitting in the phlebotomist chair, another doctor walked in with a woman about my age who was very upset. The doctor asked the phlebotomist to do a panel on her and led her to the chair beside me. She was with her Mom it seemed. Even with a partition between us for privacy, I could hear her sobbing silently and her Mom telling her it was going to be OK and she was going to beat it. All this time while she was crying, I was getting poked.

A few minutes later, the nurse practitioner walked in to ask the woman for her insurance card. As the nurse walked away, she leaned over to me and whispered, "This woman just found out she has your exact diagnosis. Maybe you could talk to her?" I nodded and the phlebotomist continued to poke me. A feeling of relief fell over me. My biggest fear when I first saw this woman in tears was that her cancer had returned, and I worried that it could happen to me. It didn't dawn on me that this was new to her.

When the phlebotomist was finished with me, I stood up and peeked around the partition. I let the woman know we had the same diagnosis and that I was now cancer free. She was 41 years old and lived in Irvine with a 2 1/2 year old. She asked me my age and if I had kids. Her biggest concern was surviving the month long chemo induction in the hospital, and missing her daughter. I told her about the nice rooms and the wonderful nurses, and how UCLA had the best treatment in the country. I emphasized that our type of cancer was curable. I didn't tell her the bad things. She had long, pretty brown hair and was worried about losing it. I told her it took my hair 2 weeks to start falling out, and that eventually it would grow back.

She thanked me and I wished her luck as we left the room. As we walked down the hall, I told Brett that I didn't remember ever crying like that when I first got the news. He laughed and told me that I cried hysterically when I got the news. I guess I don't remember it that way. In fact, trying to remember everything that has happened these last 9 months is sometimes difficult for me. I don't remember much of the bad stuff. Part of me thinks that is because I'm such an optimistic person. Then I look down at my skin and see the scars from my rashes and blood draws and PICC lines, and the lost finger nails and toe nails. I run my hand through my short curly hair. These reminders will be with me for a while.

I don't know why God has given me so many challenges in my life. Just when I think I've adjusted to raising a special needs child like Jenelle, he gives me Leukemia. They say God never gives you more than you can handle. My response is that I wish he didn't think so highly of me.

My appointment went well today. My White Blood Cell count is a little below normal, but nothing like it was when I had cancer, or when I was getting IV Chemo. My doctor approved me to return to part time work. I plan to go back next Wednesday. My doctor explained that she really wanted to stress me taking it slow because fatigue can make me more susceptible to illness (especially with flu season right around the corner!) I called my boss a bit ago because I wanted her to hear it from me first and she was very excited and agreed 100% with my doctor's recommendation.

So I guess I've come full circle now. I am a cancer survivor, and I was able to pass on my personal experience to help another who is in the same place I was 9 months ago. I wouldn't want to be in her shoes. Been there, done that. I am so thankful to finally get my life back to normal. Whatever normal means for our special family.

Thanks again for the thoughts and prayers. I will be seeing my oncologist again in one month. And of course I'll keep you posted!

Wednesday, September 02, 2009

No piggy in our house!

Finally this afternoon we got the results from Jenelle's test for Swine Flu and it was negative! Jenelle held her fever for most of the weekend and has been fever free since Monday evening. Thankfully that is one less thing to worry about - I have been healthy as well.

Brett's surgery is for a rotator tear in his right shoulder. It is an old baseball injury that has become worse over the years. Brett has been having more pain with it since coaching Jack and Jenelle's Little League the last three years so its a good time during the off season to get it fixed. His surgery has been postponed until September 15, and his recovery should take 6 weeks.

I see my oncologist for a follow up tomorrow and should know more about my numbers. Hopefully I'll get the OK to return to work! We're almost there!

Thanks again for the thoughts and prayers! I'll keep you posted.

Friday, August 28, 2009

Because we don't do things half way in this family...

So, when I got Jenelle from daycare yesterday, her caregiver mentioned that she had been lethargic all day. I dismissed it thinking it was this heat, but took her temperature anyway - 100.8. I gave her some Motrin and she was happy. This morning, her temperature was 102. No other symptoms, just a fever. Thinking I didn't want things to get worse if it was an ear infection, I called her doctor to see if they could get her in. We saw the doctor this afternoon, and Jenelle is now being tested for H1N1 or more affectionately known as the Swine Flu. We will not have results until Monday or Tuesday.

With my starting chemo pill maintenance two weeks ago, you can imagine my concerns. I had labs drawn on Wednesday, but the results have not yet been faxed to my doctor. I spoke to my oncologist about Jenelle, and she was going to prescribe Tamiflu as a precaution - but like everything else in this world, I am allergic to Tamiflu (took it once and had a severe rash and some breathing problems.) So now we are just hoping Jenelle does not have a positive result, and that she hasn't passed it to me.

I have been doing really well with the pills - no reactions so far. I have some fatigue here and there, but it comes and goes. I am getting stronger every day and really feel I might be ready to get back to work! I see my doctor on Thursday and will know more.

Brett is having shoulder surgery on Tuesday the 8th. This is something he has needed to have done for some time, and should be a quick outpatient procedure. Fortunately, Jack is well and only faking illness so he can miss his first day of school this Monday. Where did summer go?

Please keep Jenelle in your prayers. As you can imagine, any illness for her is always scary as it can get out of hand very quickly. And of course, we want some stay well prayers for me as well. I am getting so close to getting back to normal, I can taste it. I wouldn't want this to slow it down!

Thanks again - I'll keep you posted.

Wednesday, August 19, 2009

Light the Night


A very good friend of mine from many years working together is participating this weekend in the "Light the Night" fundraiser for the Leukemia & Lymphoma Society. Victoria Craig and her husband Darrell are going to be walking around Anaheim Stadium (lucky bums!) on Saturday for this event. Victoria is dedicating her walk to me.

The Leukemia & Lymphoma Society has been helpful to many families including mine. The funds raised help individuals with travel to doctor's appointments, prescription co-pay assistance, and of course research and support groups. I personally have found the on-line support group to be very helpful. And I know that without the research funds, there might not have been a cure for my cancer.

Please help this worthy cause and follow this link to donate and support Victoria's walk in my honor. Victoria's Donor Page

Thank you all so much!

Wednesday, August 12, 2009

And we begin... again...

I started the chemo pills last night and am weaning off Predisone. Other than a slight headache today (which could be something else entirely) all is good so far! I am to have a blood draw to check my counts and my immune system on August 24, and am scheduled to see my oncologist on September 3. Keep your fingers crossed that all goes well!

Sunday, August 09, 2009

Just waiting

Well, we think my rash may have been caused by the phlebotomist. It mainly stayed in the crease of my elbow where they had drawn blood. I forgot to tell him that I was allergic to latex, so we're pretty sure that was the culprit. I've been on daily predisone, and the rash is almost all gone. I am to call UCLA on Monday for more instructions and it is possible I will be starting the chemo pills soon.

I have a lot of energy now but am just waiting to see how the new chemo affects me. If I handle it well, I should be back to work very soon. My boss insists I start on a Thursday to give myself a couple of days to catch up, and we all agree I should start part time at first. So life is slowly returning to normal.

Jenelle is doing really well in her new class. In just a few weeks I've already noticed a huge difference in her. She is more patient, and she has a new word - "ba ba". Getting closer to "Da Da" which would thrill Brett to no end. Her school is teaching her to control her tantrums and I've definitely noticed a difference. She is growing up for sure!

Thanks for the continued prayers! I'll keep you posted!

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!

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

KRA..

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!

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!