Carli's Page

Welcome to our webpage designed to keep people updated about our daughter/granddaughter/niece/friend Carli Newman. Carli was diagnosed with lymphoblastic lymphoma on December 3, 2004. The tumor around her heart has responded well to chemotherapy, and she completed her clinical trial chemo December 1, 2006. Carli is officially in remission--woohoo! On December 6, 2006, Carli was diagnosed with PCP pneumonia (Pneumocystis carinii), which is extremely rare in children, more common in immune suppressed adults. She was admitted to Children's Hospital for four weeks and spent her 6th birthday as well as her 4th in the hospital. She made it through 2007 monthly followup cancer free! May she continue to be blessed by all the well wishes, prayers and thoughts sent her way. She and her mom can be reached at PO Box 1191, Langley, WA 98260.

Organizations that have touched our lives and so many others with childhood cancers:
www.rmhcseattle.org, www.candlelighters.org, www.curesearch.org,
www.leukemia.org,
www.terryfoxrun.org,
www.caringbridge.org,
www.livestrong.org,

Carli's dad started a nonprofit Children's Hospital Guild called Children's Air Corps to direct funds to neuroblastoma cancer research
Contact: Richard Newman, http://childrensaircorps.org/

We invite you to contribute a great gift!

love builds up the broken wall
and straigtens the crooked path.
love keeps the stars in the firmament
and imposes rhythm on the ocean tides
each of us is created of it
and i suspect
each of us was created for it
—Maya Angelou

Journal

Wednesday, September 3, 2008 9:27 AM CDT

I spoke too soon about Carli being a team honoree for Team in Training. Turns out they have 3 honorees already for Winter season, so she will be able to do so in 2009. However, she is excited about volunteering at the water stops for the Winter season to mix Gatorade for those training (and help eat the bowls of treats). In 2006, every time I passed the booth, she yelled "Run--Mom you should be running!" so this time, even though I am training to walk the marathon, I plan to run past the water station like the champion she thinks I should be.

Carli and I have been doing some pre-school cleaning. We actually cleared out drawers and closets of stuff and papers dating back to 2005. She met a sweet girl at Camp Side by Side named Chloe who is 1-1/2, and Carli still feels such a strong "older sister" bond with her that she made a bag of her 'baby' toys and books for Chloe. Now all we have to do is make sure Chloe visits us.

I stocked up on school lunch items, and we think Carli is ready for school tomorrow (except for the waking up on time part).

Yesterday, we discovered one possible silver lining to Carli's chemo. I took her for allergy testing for pet dander and all nuts that I have anaphylaxis to, and it turns out she is not allergic to a single thing!! This is a first for my side of the family. Something I had not known prior, the allergist told me that chemo can negate any tendency the DNA might have had to produce allergic reactions (she would have otherwise had a 50/50 chance of inheriting my allergies).

I feel like I pick up pieces of information about cancer just like a crow picking up shiny bits of metal. I receive the Fred Hutchinson Cancer Center journal among others, and it turns out federal funding is so threatened that even though Fred Hutch is at the top of the federal NIH grant list, the 3 Nobel Prize winning scientists among other top innovative scientists in our area are likely to move to other locations outside the US if grants are not funded at greater than the current 1:8 ratio. Currently, Fred Hutch needs to maintain current researcher salaries, but is restrained from recruiting more. The article describes how in the 1970s the "war on cancer" started with as much investment and energy as putting a man on the moon, but now has dwindled down to an amount that does not support the solutions researchers know they can reach if given the chance. Since so many of these treatments benefit people around the globe, I continue to be motivated to doing whatever is in my power to support the nonprofits like LLS and CureSearch to fund research.

Which leads me to my link: http://pages.teamintraining.org/wa/pfchangs09/ewaterman

Thank you!

Hospital Information:

Children's Hospital
4800 Sand Point Way NE
Seattle, WA 98105

Links:

E-mail Author: lmnop66@gmail.com