N. Seattle infant battling extremely rare form of leukemia
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SEATTLE -- At 3 months old, Charlie Cole has already had more than his share of doctor's appointments. The infant has a rare form of leukemia called juvenile myelomonocyctic leukemia, or JMML.
It only affects three in every one million children.
At birth, Charlie's white blood cell count was sky high. He had an enlarged spleen and liver, and he was covered in bruises.
Charlie's JMML is caused by a genetic mutation. The only treatment is a bone marrow transplant.
"They're looking to see if his mutation is in all of his cells or just in his leukemia cells," said his mother Jessica Cole. "I think if it's just in his leukemia cells, that's when they do a bone marrow transplant."
Charlie's older brother, 2-year-old Henry, was recently tested for the same genetic mutation, but he has no symptoms or signs of a problem. It's likely fate just hit Charlie, who is at Seattle Children's Hospital at least once a week.
"All kinds of appointments, five different teams of specialists for all his various issues. It's a lot of back and forth," said Charlie's father Jeremy Cole.
Just half of children with JMML survive, but the odds are best for little boys.
"The doctors are hopeful. His blood tests look pretty good. Usually it's really fast moving and really aggressive," Jessica said. "So far his has not been, so they think that's a good sign."
If you would like to help Charlie and his family, there are three ways to do that. First, donate blood. Charlie has already had multiple blood transfusions.
Join us on Saturday, Dec. 15 at 7 p.m. for Miracle Season, a broadcast celebrating and supporting Seattle Children's charity care program. That fund helps cover Charlie's medical expenses.
You can also follow Charlie's progress on his Facebook page.
It only affects three in every one million children.
At birth, Charlie's white blood cell count was sky high. He had an enlarged spleen and liver, and he was covered in bruises.
Charlie's JMML is caused by a genetic mutation. The only treatment is a bone marrow transplant.
"They're looking to see if his mutation is in all of his cells or just in his leukemia cells," said his mother Jessica Cole. "I think if it's just in his leukemia cells, that's when they do a bone marrow transplant."
Charlie's older brother, 2-year-old Henry, was recently tested for the same genetic mutation, but he has no symptoms or signs of a problem. It's likely fate just hit Charlie, who is at Seattle Children's Hospital at least once a week.
"All kinds of appointments, five different teams of specialists for all his various issues. It's a lot of back and forth," said Charlie's father Jeremy Cole.
Just half of children with JMML survive, but the odds are best for little boys.
"The doctors are hopeful. His blood tests look pretty good. Usually it's really fast moving and really aggressive," Jessica said. "So far his has not been, so they think that's a good sign."
If you would like to help Charlie and his family, there are three ways to do that. First, donate blood. Charlie has already had multiple blood transfusions.
Join us on Saturday, Dec. 15 at 7 p.m. for Miracle Season, a broadcast celebrating and supporting Seattle Children's charity care program. That fund helps cover Charlie's medical expenses.
You can also follow Charlie's progress on his Facebook page.
Why to little boys have a better chance of surviving this?
As the mom of a child that survived Childhood cancer I can suggest somethings folks can do to help that made a difference when my family was facing cancer. For those that want to help those in "serious" circumstances there are practical ways you can help... If you can help in a bigger than usual way call social services at Fred Hutchinson or Childrens and see if you can pay the utility bill for a struggling family one month or many. Considering Purchasing gas, food and gift cards to Target, Walmart, etc and pass them along to the social workers at Seattle Childrens, Fred Hutchinson, etc to help families with medical crisis get to and from appt and take care of basic needs. You can also empty the trail sized racks at your local drug store, purchase ziploc bags and fill them up. Take those bags to Seattle Childrens and donate them. When a child is diagnosed with cancer that family if taken by helovac without giving parents time to stop and pack a bag. Until someone is able to go to their home and pack and ship a bag for them. The hospital provides parents with these trail sized bags to be able to clean up until they get their things delivered to them. You can also record hours of current kids tv and purchase current new release movies to donate to Childlife. Kids Tv at Chidlrens goes 5 hrs and starts over again. When you're there inhouse 5 weeks to get to a state of remission before you can commute outpatient for the rest of your care watching the same stuff over and over for hours on end is crazy making! If you have subscriptions to magazines take them to Childrens to be put in the family lounge when you're done with them. Parents can't thank you enough for providing current reading material! If you have a talent for quilting or any talent using yarn it's always nice to have a cozy quilt, sox or hat, scarf and mittens to snuggle into when you're in treatment and your body temperature is inconsistant. Many things can be done to help with minimal money but kindness from the heart!
 @GCW All this is excellent advice. After a month stay at children's I'm pretty sure I had read every single magazine that anyone had ever donated to children's in the family lounge! Plus the trial sized stuff was absolutely heaven sent! :)
***WAYS TO HELP***
Even if you are ineligible as a blood donor, you are likely OK to register for the bone marrow registry. That is how it is in my case. So please by all means sign up on the bone marrow registry!!!
There are two ways to do it, one is through www.bethematch.orgÂ
The other is through the Puget Sound Blood Center. www.pbsc.orgÂ
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Also check out Team in Training, a really great part of the Leukemia & Lymphoma Society (LLS) which trains people for various endurance events and raises money to help cancer patients and their families. This is a fantastic organization, I can't say enough about it!! If you want to help, join Team in Training. Your life will never be the same again.
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www.teamintraining.org
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This stuff drives me bananas, because I want to donate blood or otherwise but can't.Â
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I can however pray for them and send money. I guess I can help !
 @pbs7mm Me 2. I'll have to ask my doctor about the bone marrow thing. Never thought to check that. Just know I can't give blood.
 @pbs7mm I agree and am as frustrated as you. I have only donated blood twice in my life and the second time was Sept 2001 and nearly put me in the hospital. The "blood bank" checks first to see if your iron level is high enough before donating, however was sneaky in the way that they said it was fine even though my level was 1 point(can't remember correct medical lingo) above what they will accept. My central nervous system went nuts after becoming severely anemic. I was told I will not ever be able to donate blood. I get a series of 5 iron infusions every year because my body does not absorb or store it well. I pray for those needing blood or plasma and wish I could help in that way, but must find other ways to help.
 @Robinsnest  @pbs7mm Team in Training teamintraining.org is an amazing organization. It will change your life forever, as you help Leukemia & Lymphoma patients and their families.
What are the other two ways to help? The first is to donate blood...what are the others?
 @WebGirlie Join Team in Training! www.teamintraining.org to train for an endurance event and raise money for the Leukemia & Lymphoma society, to help patients and their families. It's a fantastic organization that will change your life.
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 @WebGirlie It looks like if you go to their fb page you can donate money to help with his care and you can sign up for be a match to become a bone marrow donor.
 @WebGirlie Sign up for be the match. It puts you in the bone marrow registry. If you follow the link at the bottom of the article it takes you to Charlies facebook page and there is more information there on what can be done to help.Â