New Challenge

I noticed my last post was about Relay for Life.  Funny 'cause this ties in :)  My new challenge is to raise money for a similar walk/run for a different cause.  The new cause is the Crohn's and Colitis Foundation of America.  This is the very first organization we turned to, when Emily was first diagnosed.  Sadly diseases of this kind are not as well funded as others, and money is needed to help with researching both treatment and cures.  Currently there is no cure for Crohn's disease and other Inflammatory Bowel Diseases. 

So the "Take Steps: Be Heard for Crohn's and Colitis" event is not till September.  Gives me plenty of time to raise money right?  I hope so!  This is a more "demanding" event for me than Relay for Life. . . . with Relay, I walk the "Survivor Lap" and then the rest is fun for me.  The "Take Steps" walk is a 10 mile walk/run!  It will be good for all of us--in a lot of ways. 

You can read more here:
http://online.ccfa.org/goto/NancyPuckett

Relay for Life 2012

Relay for life time again.  Last year going to Relay for Life was a huge deal.  I had just finished 3 months of chemo and was only about 3 weeks post surgery.  Still had 3 more months of chemo and radiation ahead of me.  I was encouraged by the support I felt, and heard from others there.  

 Cancer is an isolating experience in many ways, and events like this really made the support of others real.  I felt supported by family and friends, but to feel supported by strangers is another thing.  I can't describe the feeling of attending Relay and seeing how many people are involved with the fight against cancer.  Seeing people with pictures of loved ones and family members affected by cancer somehow makes it concrete that I'm not alone, that cancer affects many, many people. 

Walking the survivor lap is something that was encouraging to me last year, and this one too.   Walking with others who have "been there" and understand all that cancer treatment entails is an uplifting experience.  The other big boost comes from all those around the track, cheering and clapping. 

I don't feel like a hero, I don't feel "brave", "courageous" or any of those other things people often say.  I didn't choose to have cancer, and didn't make any bold choices that furthered mankind.  Cancer was put in my life, and only through prayer and God's strength did I make it through--physically and emotionally.  I read a quote a while back "you never know how strong you really are, until being strong is the only choice you have."  That was exactly how I felt going through treatment.  There was only one alternative: get through treatment and put on my "brave face".  There were plenty of days that there wasn't enough "brave face" to put on.  Each day taught me anew, what reliance on God truly is.   

 So here I am one year later.  The doctors say I am "NED" :  No Evidence of Disease.  Labels are hard--I don't like the sound of "cancer survivor", because I truly don't want to just "survive".  I don't want cancer to be foremost in my mind.  I want it to be like other parts of my life. . . . it happened, we dealt with it, and we are moving on.  At the same time, I never want to forget how difficult it was, and how I grew.  Relay is important in reminding me of this, and of the fact that even with all the millions of dollars raised, there is still no cure.  For that matter, no one truly knows what causes cancer! 

I pray that I'll have many more of these pins, with numbers stretching into double digits and beyond!  I also pray for a cure!  In the meantime, I pray for kindness and compassion of caregivers, and I pray for treatment that is gentler and more humane with each passing year.

All Wrapped Up

Just wondering. . . . . 2 hours driving time, 2 hours waiting room time, 15 mins with the doc equals good parenting right?  That was our morning yesterday.  Follow up at Children's hospital.  The good news is that Emily's case is "all wrapped up", and she is doing great.  I was a little sad that after the long drive and 2 hours in the waiting room, that our time with the doc seemed to be only going to last 5 minutes.  I stretched it out a little, asked all sorts of questions, and think I made it slightly more worthwhile!  The surgeon congratulated us on not actually needing her services in the operating room, and without offense to anyone, I'm hoping we don't have to go back there--the drive is just too long!

Home Again!

Things change quick :)  Yesterday morning Emily's IV started being really painful.  I mean REALLY painful.  It appeared to be working correctly, just irritating the tissues around it, causing pain.  The nurse decided to run in the antibiotic she needed, then take it out and give her several hours rest before the next antibiotic needed to be given.  At that point they'd put in another IV.  In the mean time, the surgical GI team came and determined that they should start transitioning her to antibiotics by mouth--how convenient for us!  Emily never had to get that 2nd IV!

If you are able to take meds by mouth, you don't have to be in the hospital, so they let us go home!  One thing I learned. . . . if you are at a big hospital like Children's, where there is a 4 story parking garage, don't forget where you park.  First, you look silly, and second, you can't call anyone to help, cause there is no cellphone service down there!  Ironically it was Emily that remembered where the car had been parked, and the "finding the car drama" was short. 

Again, thanks for your prayers, we are so grateful to be home.  Several follow up appointments to wrap up this current "flare" but Emily is doing much better and we both are SO happy to be home in our own beds!!

The waiting game

So we are playing the waiting game again.  Waiting to hear if the medical docs want to change anything with her treatment for the Crohn's, waiting to see if the antibiotics will help, and waiting to see when we can get home!! 

On the positive side, this is truly a hospital FOR children!  Emily has a computer/TV that she can pull down when she wants to use it.  Touchscreen of course.  She can watch TV (cable!), use the internet, play music or video games, or pull up the menu to see what she wants for lunch.  When she wants food, she picks what sounds good, we call it down, and voila: room service!  The curly fries are awesome by the way.  Yesterday we investigated the teen lounge complete with a Wii and fusball table.  Today we got to go outside to the patient garden.  Amazing to me, the docs ENCOURAGE her to leave the floor and take a walk around when she feels like it.  Tomorrow we are walking to McDonalds (ironic that they have one in the hospital, right?). 

Having listed all that stuff, it's too bad that Emily isn't feeling well enough to really enjoy it.  She would love to get home.  Hopefully that will happen in the next few days, but we don't have a timetable yet.  Visiting is much more restricted here, but would probably do a lot to lift her spirits.  She is expecting visitors tonight and that has made her feel better. 

Thanks for your prayers for us!

In the hospital again

so much for the family rule. . . . "no more going in the hospital".  It isn't me this time, it's Emily.  She's been having complications with her Crohn's all week, and it only took 4 ER visits (a record for us!) before they finally admitted her last night.

As I look back over our tough week, I see how God was at work to have the right people in place when we needed them.  Example: the pediatrician on duty last night, was our "favorite" doctor from last summer's admission.  She knew Emily and her history.  A beautiful "coincidence"?  Her husband was the surgeon subspecialist that Emily needed to see :)

The short version is that Emily is now at Children's Hospital Los Angeles.  She is getting excellent care.  We are hoping she responds well to treatment and can be home early in the week.  Please keep us in your prayers!

He is Risen!

Embarassing

How embarassing that I've neglected this blog for so long!!  Just busy thankfully :) 

Three of my 5 are in a musical in just over a week, and that seems to be taking so much time--rehersals, costumes etc etc.  Can't wait to be a part of it this year instead of just watching like last year. 

Other big news is that Relay for Life is coming up again!  It is much earlier this year, but thankfully all the conflicting activities got moved, and I'll be able to participate.  Excited to be able to participate again.  There is a link to my "personal page at the top of the blog--take a look!