Monday, March 30, 2009

Team in Training & Freedom Walk

When hit with a catastrophic diagnosis or illness, organizations like the Leukemia Lymphoma Society and the Epilepsy Alliance of Orange County are often the first contact families make to get information and support. These organizations cannot help families without needed funds.

I have two dear friends that I met back in 2000 when I was pregnant with Jack through an Internet Mommy Playgroup that are participating in the "Team in Training" event to raise funds in my honor for the Leukemia Lymphoma Society. Since my diagnosis, they have been training everyday, through rain and snow, to prepare for a 100 mile bike ride. I can't even imagine riding a bike a mile. Becky lives in Arizona, and has done the ride before, and Kristen lives in Colorado and is doing the ride with her Mom. If you have the means, please help sponsor these amazing women. There is an entrance fee for the ride and part of the donations help cover that expense.

Again this year the Epilepsy Alliance of Orange County is holding it's annual Epilepsy Freedom Walk in May. Because of my chemo we will be unable to participate this year in person, but we have still created a "virtual" team for donations. A few years ago we participated in our first Epilepsy Freedom Walk as Jenelle's Avocados. The name was coined after the child of a dear friend told his Mom he wanted to be "Jenelle's Avocado" meaning he wanted to be her "advocate." The name stuck and Jenelle's Avocados continue to raise funds for this worthy cause - please help us if you can.

I can't imagine how hard it must be to raise needed funds for organizations like these in an economy like this. But I can tell you personally how these organizations are changing lives. Just three years ago, my type of Leukemia was considered "terminal." Because of funds raised from events like Team in Training, they have found a cure for my type of Leukemia. That is HUGE. And of course, the Epilepsy Alliance helps families every day when they get the devastating news that a loved one has epilepsy. Support groups and advocacy are offered to these families, and we can personally attest to all that they have done for our Jenelle.

If you have the means, please help out. You never know when the next cure will be found, or when the next family will make that call asking for support.
Thank you!

Friday, March 27, 2009

Our Little Steel Magnolia

The other night, I watched the movie Steel Magnolias. For many reasons that movie has always been one of my favorites, probably because I have many amazing southern women in my life that remind me of some of the characters and many of the lines in that movie are hysterical. Those of you raised by a southern woman know what I talking about. However, in watching it again the other night I was struck with how much the role of Julia Roberts reminds me of Jenelle, which of course would make me Sally Field, the mother who vigilantly fights for her daughter every minute of her life.

Julia's character Shelby suffered from Diabetes and even though she tries to stay on top of her health, her body often gets the best of her. Her struggle to try to live a normal life with marriage, children and work remind me of Jenelle's everyday struggles. Jenelle has struggled to accomplish so many amazing and unexpected things even though her brain tries to slow her down. And each time I think of how Jenelle has overcome the odds, I am reminded that she is a special gift and that things could change in an instant. Like Shelby says in the movie, "I'd rather have 30 minutes of wonderful than a life time of nothing special." With Jenelle, we have had more than our share of 30 minutes of wonderful, and I feel so blessed for that gift.

I didn't mean to get too deep with that movie analogy, but wanted to share what I was thinking. Jenelle seems to be doing really well since we increased her seizure medication. She has been a happy little girl of late and is using her hands to play with toys. Also, she is doing more exploring of the house and is finding her way down the hall to her room to play with her toys there. Last Sunday, she made her way to her room and I caught her napping in the sunlight with a toy in her hand. She is very happy right now, and we are enjoying every minute. We are grateful for these moments with Jenelle where she has seizure control and is able to explore her world and enjoy 30 minutes of wonderful.

As for me, I am still home and am starting to worry that I made the wrong decision in not wanting a hospital admission. Last night I started to run a low grade fever, and I've had a sore throat for three days. The sore throat could be a side effect of the chemo (remember chemo attacks all living cells) but I've had a runny "clear" nose to go with. I spoke to Dr. Territo this morning and she gave me the go ahead to start oral antibiotics. She was not too concerned with my symptoms, and told me that the antibiotics should take care of it over the weekend. If not, I am to call her on Monday, or go to the ER if things get much worse. Her exact orders were to stay in bed and drink lots of fluids. That I can handle, and I have to trust her comfort level with this plan.

As for my Mom, she has been moved to a rehabilitation center where she will stay for 2 weeks. Her heart tests were fine and they found some fluid on her lungs, so it is possible she had walking pneumonia, and the shortness of breath caused her fall. Turns out she broke not just her tail bone, but the bone that protects all of the nerve endings in the spinal cord. It's no wonder she has been in so much pain.

So that is our update for now. Thank you for the continued thoughts and prayers. Please send prayers that the antibiotics start working and that I can continue to stay in the comfort of home during this chemo recovery. We're in the home stretch now and I can hardly wait to be done with all this IV chemo stuff.

Thanks again - I'll keep you posted! KCA!

Tuesday, March 24, 2009

New plan - Stay Home!

Yesterday we saw Dr. Territo, my oncologist, for a follow up. We were told to expect to be admitted if my numbers were zero. After a long wait, the numbers came back in really good shape. I am no where near zero yet, and in fact my blood is so healthy I could donate platelets if I wanted (or could.)

Dr. Territo said that it is possible that I may not hit zero with this last chemo drug. It's a slim chance, but sometimes it just does that. She is willing to keep me home for as long as possible, and said that if all goes well and I may not even need to be hospitalized. None of the protocol changes, I still need to be isolated, and still need to call immediately if I start to run a fever, or have vomiting and the like. She gave me some antibiotics in case we need them, and is planning to see me in two weeks, assuming I'm still home. Please pray it stays this way!

As for my Mom, it looks like she could be having some issues with her heart, which could be the reason she fell last week. She is still in the hospital and they are still running a lot of tests. I don't know more than that, but I'm sure she wants to be home.

So that is the plan for now. Thanks for the continued thoughts and prayers.


Saturday, March 21, 2009

Just Waiting

On Friday, I received my last dose of the chemo drug. While I haven't had any nausea, this drug has made me extremely tired. So much so I sleep a lot and my vision is very blurry. It's been hard to type to update, so this may be all you get for now. The doctor expects me to be admitted for neutropenic watch on Monday, and that could last 3 to 4 weeks.

My hospital support system took a hard hit this week when my Mom fell and broke her coxy bone. She had been traveling to stay with me in the hospital and now is resting her own injury. She is currently in the hospital at St. Agnes in Fresno and in a lot of pain. Please say some extra prayers for my Mom.

I'm taking lots of projects for the hospital and hope that things like Fantasy Baseball and the NCAA tournament keep me occupied. I'll update when we are admitted. Thanks again for the continued thoughts and prayers!


Monday, March 16, 2009

Round 3, Day 1

The photo above was taken with my cell phone today of the chemo med I got via IV. It's called Mitoxantrone (mye-toe-ZAN-trone) and yes, it's "smurf" blue. Very strange to say the least.

We drove to UCLA today to begin Round 3 of outpatient chemotherapy and we lucked out with Brett getting my appointments moved to an earlier time of 10:00 a.m. However, tonight I had a message moving my appointment tomorrow to noon, but no word on the rest of the week. Please pray it stays at 10:00 because that works best for the rest of the people lined up to drive me to UCLA and back. Tomorrow I am traveling with my Aunt Joanne and Uncle Jim. I am looking forward to catching up!

I got to see my oncologist today as she stopped by to give me a prescription. Dr. Territo thinks that my counts could be down to zero as early as Friday (meaning I will be admitted then) or Monday. We're hoping for Monday so I can have two extra days at home as this weekend is crazy busy. As it turns out, the chemo I am getting this Round will drop my counts quicker, and require a longer recovery. I'm told to expect a 3 to 4 week hospital stay. Oh joy!

Dr. Territo also got to settle an argument between me and Brett. In the last week, Brett announced that I had 2 more "rounds" of chemo after this one. I didn't like that idea to say the least, and was pretty sure I had one more round. Needless to say, always bet on the wife! I was correct and after this round, I will have one more IV round of chemo, then once I've fully recovered, I will be able to return to work (possibly late July!)

I know many of my wonderful co-workers will be happy to hear that (and believe it or not, I miss work too!) Speaking of which, last week the doorbell rang and a messenger gave me a box of daffodils that my co-workers purchased and sent to me to help lift my spirits! At least 12 vases in all with three teddy bears all benefiting the America Cancer Society in honor of their Daffodil Days! To my surprise, the daffodils bloomed the very next day and we are currently enjoying a burst of yellow in the kitchen! Thank you all for thinking of me, it truly brightened my day!

That is all for now - I will update when I can! KCA!

Sunday, March 15, 2009

Good news/Bad news

Good news is that insurance finally approved my outpatient Round 3 of Chemo to start on Monday. The bad news is that I am scheduled to get my chemo at 3:00 p.m. each day! Keep your fingers crossed for us on Monday. I have to be there at 8:30 a.m. for my ECHO test, then I have to sit around until my 3:00 chemo dose. We're hoping to talk them into changing the time to an earlier slot if we can while we're waiting on Monday. In not, we'll be sure to hit horrible traffic leaving each day at 4:00.

Thanks in advance - I'll keep you posted as we continue to KCA!

Thursday, March 12, 2009

Trip to UCLA for Jenelle

Today was our 6 month check up with Dr. Shields at UCLA for Jenelle. It was a good visit. We spoke with Dr. Shields about Jenelle's new seizures of late, and he feels they may be do to yet another growth spurt. Jenelle has gained 3 pounds, and 2 inches since he saw her last September. Dr. Shields decided to increase Jenelle's Felbatol as we have a lot of room left for an increase of that drug. Brett and I agreed with that since Jenelle has done so beautifully on Felbatol for the last 3 years or so. If after the increase, we continue to see the same seizures, we'll let Dr. Shields know and we'll go from there.

Dr. Shields was thrilled to hear about Jenelle's first word ("Mum") and agreed that we were going to see some differences in Jenelle as she reacts to what's been going on with my cancer treatment. He feels my absence in December definitely was a part in getting Jenelle to verbalize the word "Mum". Dr. Shields wants to check Jenelle's blood work again to make sure her levels are OK, and will see us again in 6 months.

As for me and the start of Round 3, no word yet on whether or not next week is approved. I spoke to UCLA this morning, and they asked me to contact my HMO to help get the authorization approved. I made a couple of phone calls, but still no word. Brett and I were thinking if I can't get approved for Monday, we may have to go ahead with a hospital admission for me to get the chemo, in order to keep everything on schedule for me to be out of the hospital for Jack's First Communion. Isn't it weird how insurance companies work? It's easier to get admitted, clearly something more expensive, than it is to authorize an outpatient procedure. It boggles the mind. In the mean time, we are working on a driving schedule to get me to UCLA each day next week in hopes that everything is approved.

The fundraiser on Sunday was very successful and many thanks goes out to my good friend Erin for all her hard work in planning the event. Brett and I attended the event and it was good to see so many of our friends and family. In all honesty, it was a little overwhelming at times. We are so very fortunate to have such a wonderful support group around us. Thanks again to everyone involved.

That is all for now. I will update when I know more. Thanks again for the continued thoughts and prayers. I will keep you posted.

Friday, March 06, 2009

Round 3 Delayed

I just got the news from UCLA that Round 3 of chemo is going to be delayed for a week. The lab results from yesterday's blood draw are not yet available and apparently my insurance has not yet approved Round 3. I received notice last week that COBRA was going into effect for my insurance as of March 1, but that I have until the end of April to start paying. I think that may be a cause for the authorization delay. UCLA decided it was best to wait another week so they could have more time to work with my insurance. I am happy with this decision as it will give me more time at home and hopefully more time for my happy pills to take effect. ;)

This Sunday there is going a Happy Hour/Silent Auction Fundraiser on our behalf at the Auld Irisher in Orange. One of my best friends since college, Erin Armstrong, approached us in January with this idea. We were hesitant at first, but Erin insisted that many people wanted to help us out and that we should let them during this time in our lives. Erin has done all the planning, and I'm sure the event will be a lot of fun. Brett and I have constantly wondered if we have done enough in our lives to be so deserving of such friendship and charity. We are overwhelmed and so very grateful at the outpouring of love we have received. We hope to stop by for a little bit on Sunday and thank our wonderful friends in person.

Please email me of you are local and would like information on Sunday's event. Thank you again for your continued thoughts and prayers. I'll keep you posted. KCA!

Tuesday, March 03, 2009

Follow Up & Round 3

Last Thursday, I had my follow up appointment with the oncologist's nurse. The good news is that my numbers are good; my neutrophils were at 1,100 - 1,500 is considered normal. The unexpected news was that they want me back to start Round 3 of chemo on Monday, March 9. We were surprised to hear this as we thought I might get a month off like last time. Of course, hearing this with my emotions being so down, I did not take the news well. I wanted to desperately be out of the hospital just a few weeks ago, and now I have to go back so soon.

And contrary to what we were told in January, Round 3 will consist of 5 doses of chemo, not 3 doses. I will also be given a drug that I haven't received, so we are not sure how I will respond. I still have the option of receiving the chemo as an "out patient", and then only returning to the hospital when my counts go to zero like last time. After a long talk with Brett, we are considering the "out patient" plan so I can have some more time at home. This will require that we drive to UCLA 5 days in a row. Brett's parents and my good friend Erin have offered to help out, so that will take some of the stress off Brett. We have until this Thursday to make that decision. The oncologists wants to see my numbers this coming Thursday. If they are still low, she may delay Round 3 another week.

On the up side, it will be good to get this done. If I start Round 3 on March 9, I will definitely be out of the hospital for Jack's First Communion ceremony on May 9. However, I will most likely be in the hospital for Easter.

We spoke to the nurse about my depression, and she put me on some happy pills. The pills have really helped me sleep, but I haven't seen much difference yet in my mood and emotions. The nurse said that I must have been a very active woman prior to my cancer - she has no idea. I've been praying a lot for more patience, as we are almost more than halfway done. I realize I've been very fortunate in all this that I've responded so well, but still it has been long and hard to endure.

Last weekend the kids started Little League again, and I got to go to Opening Ceremonies and watch their first games. It was really hot this past weekend, and I was very tired with all the events. Still it was wonderful to spend time with the kids.

I will let you know when we start Round 3 as soon as we get the go ahead from my oncologist. In the mean time, please send prayers for my patience, that I can weather these last two rounds better than last time.

Thanks for the continued thoughts and prayers. KCA!