Monday, December 29, 2008

Time to wear my hat

Nick will be having his 90 day scans next Monday, Jan 5th. I've allowed myself to be mentally unstable for the week prior to scans so to warn those I love, I have put on my anxiety hat (I probably should have a sign on my car, too). No one else is worried even a smidgen, so I'll take it on for them; I'm the mom, after all, and it is my right. Lee reminded me of my favorite quote by Corrie ten Boom, "Worry does not empty tomorrow of its sorrow; it empties today of its strength." I know that, but... It's not really worry I feel, just a dull sense of unrest - the wanting to protect my child, but can't.

Some may wonder of the impact of keeping track of all the other children with rhabdo, but these aren't statistics suffering, it's our own babies, daughters, sons, grandchildren, nieces, nephews, neighborhood kids, teenagers, cousins. I think we try to stay united for support for we truly know what we are going through as mothers; more importantly to make a united front in getting this monster of cancer eradicated, if only one child at a time. I think it is equally important for me to offer words of comfort as well as words of celebration in declaring what worked for Nick.

I just received an email about President-Elect Obama and how we can get some attention. Please read:

Obama is again taking questions to the Transition Team. The questions are then voted on by the public. Below is the question that was submitted by the founder of PAC2 (People Against Childhood Cancer). Please vote for this question. Do not submit the question again.

Childhood cancer is the #1 killer disease of our kids: 46 are diagnosed & 7 die each day. Additional funding is needed for research into better treatment options. Will you include funding in your budget to prioritize research to save our kids?

To vote it to the top,
1 - go to:
2 – register (if you haven’t already)
3 - search for “childhood cancer 46”

Vote for the question submitted by AJs Dad. Choose the check mark, not the X.

Please vote for our question. Let's get it in the top spot. Tell everyone you know to vote for it.

YOU DONT HAVE TO COPY AND PASTE THE SAME QUESTION. Because of duplicate postings last time, we lost out being in the top ten! We can do it this time.

Thank you! Pass it on!

Nick is doing incredibly well; he passed ALL his classes - engineering, calculus and chemistry - simply fantastic! He had his wisdom teeth pulled a couple of weeks ago and is healing slowly. He is loving his job at Deer Valley and has seen a few celebrities. He is eating like a typical college kid and at this moment, entirely independent! I am incredibly proud of him.

Happy New Year and many blessings of health and happiness to our wonderful network of family and friends. Your power and reverence has been undeniable, thank you.

Love Lori

Saturday, December 27, 2008

Please pray for...

As our family celebrated the birth of Christ and our own miracle in Nick's continued remission, I received some very sad news. Our favorite rhabdo warrior pirate, Diego - age 5 - suddenly passed away on Christmas Eve He had been in the hospital with various ailments the past month and he was getting ready to go home; he was called home to be with his Heavenly Father, instead.

There is another 5-year old I've grown fond of, actually two - twins Caden & Coleman. These two are a pure delight to know through the wonderful writing of their mom Coleman also had a serious setback on Christmas Eve.

I realize this is Nick's site, to post about his journey, but I can't help but feel that while we embrace his victory in this particular battle, we have a fierce responsibility to continue the valiant fight in the war against cancer. I ask, once again, for you all to pray for these two little boys and their families. We have had an enormous outcry from many rhabdo parents in wanting to make a difference. I have re-posted some important suggestions to anyone that is considering making contributions.

To the list:

It is extremely important to make sure that our fundraising really accomplishes something. Here is an incredible example:

A family on this list raised a considerable amount of money and donated it to CureSearch specifically for rhabdo research. Part of this money is going for the purchase of special (and expensive) packing tubes that will be included in the "rhabdo kit" that goes to every Children's Oncology Group hospital. The tubes specifically protect RNA in tissue samples as RNA deteriorates very quickly. These samples will then be available to researchers who are trying to understand more about the biology of rhabdo. RNA will tell them what genes are being turned on far in excess of normal cells. These genes then become the targets for new, more effective and less toxic treatments. A directed donation to CureSearch can help fund more of these sorts of widespread benefits for rhabdo research.

Here is another example:
Private funding has partly supported two recent international rhabdo conferences. One was held in Bristol England in November, the other will be held in Seattle in February. These meetings are intended to pool international research information and to gather together basic researchers who work on rhabdo biology and clinical researchers who design new treatments. These meetings are expensive to put on, but the benefits of getting numerous researchers together face-to-face can't be measured in dollars.

However, no matter how much money we raise privately, it will never be enough. We also need to raise awareness of the toll that childhood cancer takes on society. Here's a good and easy way to do so:

I was very excited about the passage of the Conquer Childhood Cancer Act of 2008, but in this economy with so many competing demands, it will be important to make sure that Congress appropriates the $30 million intended for childhood cancer research that the Act permits. One way to make sure that it happens is to join the advocate network that pushed for this Act:

The more Rhabdo families advocating on this group, the better. Research might help kids in the future, but families struggling with rhabdo need help and support right now. I have two suggestions for donations to support organizations:

First, ACOR, which makes this list possible. It's easy to take this list for granted, but please don't! Even though the list managers are volunteers, it takes money to keep the hardware and software running for the lists to work properly.

Second, the Sarcoma Alliance The Sarcoma Alliance is the only national organization whose mission is solely education, information, and support of people with sarcoma and their families and friends. Peer-to-Peer matches people with similar diagnoses for support; Hand in Hand is the assistance fund for seeking second opinions; the Discussion Board provides additional connections for people with sarcomas.

Remember it doesn't have to be dollars you donate; it can be your time. There are lots of opportunities to help. If anyone needs ideas, please let me know and I can suggest an endless supply.

Joan, mom to Ali, dx stage 3 alveolar 9/96 list co-owner, Rhabdo-Kids (also Patient Advocate with Children's Oncology Group, and board member of Sarcoma Alliance)

Thanks, everyone, for caring.
Love Lori

Monday, December 15, 2008

Christmas Story

As you know, I follow many other children online in their journey with cancer. I came across one from a sweet little 6-year old named Ellie; her mom writes a beautiful site with updates (

I don't know the specifics about the following story posted Dec 4th on Ellie's journal site (date, etc. - but I don't think it really matters) - you can visit her website to look at the photo. I got chills reading it and wanted to share it with all of you. Here you go...

This is a truly inspirational story. Blessings to all the parents I have met through this devastating journey called 'cancer'... your children who are in pain or suffering are in good hands. We must believe. Let's just pray together - God will hear us, his will will be done.-------------------------------------

So many of you have heard me tell the story, but I wanted to pass it along anyway to those who didn't hear it and for those who wanted it in email.

A couple of Wednesdays ago, I got an evening phone call from the pediatric ICU at Presbyterian Hospital, where I work as a child life specialist. Usually when they call at night, it means something bad has happened. This, however, was different. My coworker told me that the most amazing thing had just happened and she just had to call to tell me.

We had a patient who has really grown up in and out of the hospital. All the staff knows her and her family. She had been in the Pediatric Intensive Care Unit (PICU) for about a month, and had been intubated - on life support. She was not doing well. The doctors had approached mom about taking her off life support the Saturday before. Mom was okay with it, and said that she'd been through so much and if was her time to go she wanted to honor that. So they had taken her off.It was Wednesday and she was still alive. Amazing. The doctors approached mom about taking off her oxygen mask. Mom was supportive, and began praying over her daughter. The mother of another young patient who was in the bed next to her began praying with her.

The nurse practitioner went to the nurses station to chart that she had taken off the oxygen mask. While doing so, she looked up at the security monitor that videotapes the double doors leading into the PICU. It records anyone who may be waiting outside the doors to get in since it is a secure unit. She saw a man standing there, and it looked a little funny to her, so she decided to walk down the hall to open the double doors personally. When she opened them, no one was standing there. She walked back down to the nurses station to finish charting, assuming he had walked away, but saw him still standing there on the monitor.

So she opened the doors with a button near the nurses station and leaned over to see him walk in, but no one was standing there. She pulled over another nurse and both stood staring at this man on the monitor and opening the doors to find no one there. The nurse practitioner leaned in closely to look at the man on the monitor and said, 'Oh my gosh. That's an angel. You can see his wings!'

They said that the sun starting shining so brightly and the whole PICU was strangely filled with light. They said he was a tall man and you could see wings behind him.T hey pulled over all the staff of the PICU and the two praying mothers and everyone was staring at this man on the monitor and opening the doors to find no one there.

Crying, everyone pulled out their camera phones to take pictures, but no one could get it to show up on their camera. The mother of the girl pulled out her camera phone and finally got a picture of the angel who was guarding the doors to the PICU. He turned out as a man of light.

I have attached the picture from her phone.The girl was later discharged from the hospital to go home. A Miracle.

This story makes me so grateful for the way that God reveals himself to us, and the how Great He is really is. We have much to be thankful for this holiday. :)--

Katy L. Field, CCLSCertified Child Life SpecialistPresbyterian Blume Pediatric Hematology and Oncology ClinicCharlotte, NC

Merry Christmas
Love Lori

Thursday, December 11, 2008

Finals Week

This past week I have seen more of the library than I have of my apartment. Final are next week and will basically determine if I will pass the class or not. I have already taken my photography final and will easily pass with a B and two days ago I had my last exam for Chemistry which worried me because I knew I didnt do well (like I have on every chemistry test). I was able to look at my scores for the year and see my final grade, since the final for Chemistry is optional and will replace my lowest exam score, and I have somehow passed with a C. I have never had a class that required so much studying and time put into it. I have to be honest, I was not sure I was going to pass this class, but because of the grading curve I guess I am one of many students who doesn't do so well on the exams.
However, my Calculus class has also been tough this year and I am not so sure if I will pass it either. My Engineering class I have done well in and probably have a B in it as of now. But it will all depend on how I do on the final.
So untill Tuesday of next week rolls around, it looks like I will be seeing a lof of the library again. I cannot wait for christmas break to roll around!
Also, First Descents is accepting applications for camp in 2009! So if you fit the age criteria and are a cancer survivor definitely give it a go. They have two new camps this summer! I believe they are in Wisconsin and Oregon. I am leaning on going to Idaho because it is said to have the best whitewater and its warmer. Key word there is warmer. No more dry suits for me, ha even though I loved Montana.
I send my love to everyone!


Thursday, December 4, 2008

Im a working man now

So this past Tuesday and Wednesday I have missed school due to mandatory job training at Deer Valley Ski Resort in Park City, UT. I was hired on about a month ago and have been looking forward to working as a Lift Operator ever since. I only work weekends do to my school schedule so I will be busy everday now.
Training was pretty fun and pretty easy. Deer Valley has been named #1 ski resort in North America for the second year in a row because of its 5 star qualities. I believe a seasons pass is about 1700 dollars their. Crazy huh! So half of my training was on how to be the biggest suck up to the customers and give them anything they want. We'll see how that goes.
Another crazy thing is I am one of the very few Lift Operators who is a Utah native. Most of the people hired on are from out of state and even out of country. And most of them aren't experienced skiers which really shocked me. Which is why I have been stationed to one of the main lifts on the top half of the mountain, because you have to ski from station to station and my lift doesnt really have any easy runs on it so its kinda nice. On my hour break I can ski wherever I want, which will probably be tree skiing in the powder. I love that.
I start work this weekend where Deer Valley will be hosting a Celebrity Ski Race. I dont know who is going to be there but I hope it is awesome.
Alright got to go..... Sorry for not writing in a long while.