Liver for LuLu: MiLo MaN's BeNeFiT

Tuesday, February 16, 2010

MiLo MaN's BeNeFiT

James donated several gift certificates like the one above for Milo's silent auction. He teased me asking why I didn't have him pose rather than stealing an image online...time restrictions were my only reasoning...he looks great with his shirt off! Glad I didn't run into anything dirty when I Google searched "hot construction workers"

I met and grew to love MILO while we were hospitalized at PCMC and he was receiving almost daily chemo at Hunstman Cancer Institute which is connected to PCMC. We were introduced my my sister-in-law-Stacey who has been a long time friend of Milos.

Jonah happily donated his piggy bank money to Milo. He knows it will help him buy medicine to make him better, just like LuLu needs lots of medicine. I hope and pray to raise compassionate children. That is my number ONE priority in this life, more important than anything else James and myself could accomplish. I think Jonah is off to a great start. He's been a wonderful, caring brother to LULU and also donated his piggy bank back at Christmas too for a family in need.

Having a little fun with the stache and DO which is what Milo use to look like before he lost his hair due to chemo treatment.

Milo's benefit/birthday bash was a hit minus the birthday boy not being present, sicker than a dog. Worse day of chemo side effects to date. He was greatly missed but he was felt in spirit as we all wore MILO buttons with a cute little mustache on it. Apparently that and a big curly fro were Milo trademarks pre-cancer. So I thought it appropriate to get a wig and stache in memory and to serve as a reminder of what will grow back after his nasty fight with testicular cancer is won. Somehow I ended up being the luckiest girl ever and got to hand deliver the money raised, a wonderful birthday cake made by my dear friend Leslie (http://www.simplysweetsbyleslie.com)/and a few other items. Love this man, so lucky we became insta-friends.

HIS Buddies

My BUDDIES, representing...missing Leslie, Ally C., Lacey & Melissa- who were all there to support in many ways. Thank you and to Ramsi, Jayma & Allicen W. who sent wonderful contributions to the silent auction. I also met one of my Bloggin buddies Kendra (see side bar Angel Kenz) who showed up to support Milo and meet me. Love this girl. We (Hallie joined) had dinner together a few days later and talked for HOURS...but it still wasn't enough time. SHE is one heck of a lady. Love, Love, Lover her. Have I said that I love her?

This is my dear friend Allie's little girl KAIA. She's a doll. So sweet and lovely. Notice her Milo pin. It was fun to have little ones running around. I know Milo would have loved the night.

One of my "wins" from the silent auction with my friend Natalie who scored an airbrush tan.

MY THANKS TO:

Mayor Snarr (golf foursome)
Miche Bags http://www.michebag.com/

Badger Construction :) (gift certificates)

Cheryl Inc. http://www.cherylinc.com/

Bodyskape http://www.bodyskape.com/

City Sun Tanning http://www.citysun.com/

Shade Clothing (Ashley England) http://www.shade.com/

Nappi Clothing http://www.nappiclothing.com/

Red Mango http://www.redmangousa.com/

Ally Brynn Designs http://www.allybrynndesigns.blogspot.com/

Jenna Hansen (reformer pilates sessions) 801-664-9625
Schmidts Pastry Cottage (donated 200 cupcakes!!) http://www.schmidtspastry.net/

Leslie Smith http://www.simplysweetsbyleslie.com/

Josie Dellinger (hair, Taylorsville 801-631-8553)

Lisa Snarr (hair, Murray 801-455-3247)

Tabitha Rex (hair, Lehi 801232-6402) I can vouch for all 3 of these girls being GREAT!

Stephanie Wood (Avon Rep. & photographer) 801-598-5044

Preston & Nikki Price, Massage Envy (801-253-5330, 801495-4280) http://www.massageenvy.com/

My Mum Bonnie, no web site--she's just great!! Thanks MuM, you're the best.

4 comments:

Jamie said...: Ugh, Lizzie. I'm so sorry I missed it. I/we have been SICK at our house. I pretty much hate my life right now. Like I said, "ugh!". Looks like it was so fun. And what about the cake? I wanted to see pics of the cake! When are we doing dinner again? And could you be any more beautiful?; February 16, 2010 at 9:30 PM
Anonymous said...: Liz I just wanted to let you know that your family's story is amazing! I check your blog everyday! I work with a "liver mum" whose son had a transplant at 10 months and is now 11 years old and doing oh so wonderful! She wanted me to let you know if you have any questions or just want to talk I have her email and her phone number. She wanted me also to tell you how special it is that you got to meet your "angels" family. That is a side of it that she never had and has a "hole" in her heart from it. Much love and prayers to your family!

Christy Snow (Lederman); February 16, 2010 at 10:51 PM
allieb said...: so glad we were able to make it! you did a fabulous job & Kaia had a great time running around : ); February 17, 2010 at 8:34 AM
Jo Lynn said...: What a sweet boy you have, it's a beautiful thing for our little one's to learn compassion and Jonah see's it first hand, what a great thing to do!!! I admire what you do with your trials and how so much good has come from them and how you and your family have blessed the lives of so many others!; February 17, 2010 at 3:28 PM

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Welcome to liverforlulu.blogspot

Meet beautiful, brave, tough-as-nails London (aka "LuLu"). She's been fighting Alpha 1 Anitrypsin Deficiency since birth. It's a genetic disease that causes liver disease and sometimes lung disease later in life. She received a new, clean, healthy, pink, perfect, beautiful liver January 15th 2010 thanks to the generocity of a family willing to donate their childs organs to give life to others. She is LuLu's Angel. We thank every person who takes the time to look at LuLu's blog. I am so happy that many now know what Alpha-1 is. I am grateful that some may change their veiws on organ donation because of London's life that she's been living with such dignity, strength and grace. Feel free to email me, elizabethbarnum(at)hotmail(dot)com with questions or comments.

What is Alpha-1?

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a condition that is passed from parents to their children through their genes.This condition may result in serious lung and/or liver disease at various ages in life. For each trait a person inherits, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective alpha-1 antitrypsin genes. One defective gene came from their mother and one from their father.There are many types of defective alpha-1 antitrypsin genes. The most common abnormal genes are called S and Z. Normal genes are called M. A person who does not have Alpha-1 will have two M genes (MM). People identified with Alpha-1 most commonly have two Z genes (ZZ). Current evidence suggests that there are about 100,000 people with Alpha-1 (ZZ) in the United States. Another deficient gene combination is SZ, although people with this gene combination are less likely to get lung or liver problems than those with two Z genes. (lulu is ZZ)

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

The most common signs and symptoms of disease caused by Alpha-1 are: Shortness of breath, wheezing, chronic cough and sputum (phlegm) production (chronic bronchitis) reacurring chest colds, eyes and skin turning yellow (jaundice), swelling of the abdomen (ascites) or legs, vomiting blood (from enlarged veins in the esophagus or stomach) decreased exercise tolerance, non-responsive asthma or year-round allergies, unexplained liver problems or elevated liver enzymes and bronchiectasis.

Alpha-1 has been identified in virtually all populations and ethnic groups. It is estimated that about 1 in every 2,500 Americans have Alpha-1. Individuals with Alpha-1 may remain healthy throughout their lives. Early diagnosis and avoidance of risk factors such as cigarette smoking, can help prevent Alpha-1 from causing disease. An estimated 20 million people have one normal and one defective AAT gene. People with one normal gene and one defective gene (for example MZ) are called “carriers”. (james and liz) Carriers may pass the defective gene on to their children. Alpha-1 can lead to lung destruction and is often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD). Alpha-1 can’t be diagnosed by symptoms or by a medical examination; you need to get a blood test to know for sure. Alpha-1 is the most common known risk factor for emphysema and COPD. About 3% of all people diagnosed with COPD may have undetected Alpha-1. Alpha-1 can lead to liver disease. The most serious liver diseases are cirrhosis and liver cancer. The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that all individuals with COPD be tested for Alpha-1.

What does YOUR liver do for you?

How important is the liver?
The liver is a vital organ. Without it we would not be able to live. Apart from the brain, it is the most complex organ in the body. It has a wide range of functions and acts very much like a factory. One of its most amazing features is its regenerative power. Some 9/10ths of the liver can be cut away and provided the remaining 1/10th is healthy, the liver will grow back to its original size.

The liver is a processor
The food that we eat passes into the stomach via the esophagus (gullet). The food is broken down by the action of the stomach and the small intestine. The nutrients from the food are then absorbed into the blood via the vessels in the walls of the intestines. These drain to veins which lead into the portal vein which carries the blood into the liver. The nutrients are processed in many different ways in the liver. This processing of the food is known as metabolism. The final products made are used by the body for energy and growth.

The liver is a manufacturer
The liver produces a number of different substances which are vital in order for healthy growth and development. For example: 1. The liver cells produce substances which assist with the clotting of the blood, e.g.Prothrombin. 2. The liver cells make proteins which are carried in the blood. These have many functions. Albumin, for example, helps to control the distribution of fluid in all parts of the body and transports many substances to and from the liver and kidneys to other parts of the body.

The liver is a storage depot
The liver stores energy in the form of glycogen (sugar). It also stores a number of other substances, e.g. copper, iron and vitamins.

The liver is a controller
The liver plays an important part in controlling: 1. The correct level of many hormones within the body. 2. The blood sugar (glucose) levels. The liver stores glucose in the form of glycogen when there is too much glucose in the blood and releases it when the blood sugar level falls. 3. The amount of fluid the body retains and its distribution throughout the body. 4. The concentration of cholesterol which it converts into bile salts. 5. The action of many drugs

The liver is a filter
The liver removes many unwanted substances from the body. It plays an important role in controlling the harmful effects of some drugs and products of metabolism by changing them chemically before excreting them into the bile. Bilirubin (unconjugated or indirect) is produced when old red blood cells break down. The average life of a healthy red blood cell is 120 days. This bilirubin is carried in the blood stream, attached to albuimin, to the liver where it is altered into a different form (conjugated or direct bilirubin) which is then: 1. Excreted in the bile. 2. Transferred into the bile which passes via the bile ducts into the intestine and appears as brown pigment in the stool. Bile is continuously produced by the liver cells mainly by the action of bile salts. It collects in and passes out through the network of bile ducts into the intestine. Bile salts play an important role in the digestion of fats.

The liver is a defender
The liver plays an important role in fighting many types of infection. In particular, protects the body against infection which arises in the gut. With so many different and complex functions, it is not surprising that more than 100 types of liver diseases have been identified in babies and children.

Liver for LuLu

Tuesday, February 16, 2010

MiLo MaN's BeNeFiT

4 comments:

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