#Repost from @accorg
—- WE NEED YOUR HELP! ‪#‎StepUp‬ and Create Change! The Congressional ‪#‎ChildhoodCancer‬ Caucus’s annual Summit is taking place today and we ask you to rally your friends and family to reach out to Congress!! Also, today through Sunday many Childhood Cancer Organizations, families affected by childhood cancer, and childhood cancer supporters are gathering at Capitol Hill, Washington, D.C. in an attempt to create much needed change! For all of those that are making the journey to the Capitol today and for all of those at home, let’s help raise their voices even higher and further through social media. Here’s how YOU can help: 1) Share this post! Ask congress to make a CHANGE for Childhood Cancer Funding! 2) Share the SoundOff link: http://www.soundoffatcongress.org/nY2f Click on the red “Tweet SoundOff” button and enter your zip code to get the tags for your representatives. Copy and paste the tags and make a post asking them for change! 3) Share action alerts or petitions that relate to Childhood Cancer Research Funding. 4) Share a #StepUpSelfie that shows your advocacy in action, like walking up the steps of the Capitol building. 5) Use and share the #StepUp Image Bank that has graphics to utilize freely at http://stepupforchildhoodcancer.com/images.html



#gogold

#Repost from @accorg —- WE NEED YOUR HELP! ‪#‎StepUp‬ and Create Change! The Congressional ‪#‎ChildhoodCancer‬ Caucus’s annual Summit is taking place today and we ask you to rally your friends and family to reach out to Congress!! Also, today through Sunday many Childhood Cancer Organizations, families affected by childhood cancer, and childhood cancer supporters are gathering at Capitol Hill, Washington, D.C. in an attempt to create much needed change! For all of those that are making the journey to the Capitol today and for all of those at home, let’s help raise their voices even higher and further through social media. Here’s how YOU can help: 1) Share this post! Ask congress to make a CHANGE for Childhood Cancer Funding! 2) Share the SoundOff link: http://www.soundoffatcongress.org/nY2f Click on the red “Tweet SoundOff” button and enter your zip code to get the tags for your representatives. Copy and paste the tags and make a post asking them for change! 3) Share action alerts or petitions that relate to Childhood Cancer Research Funding. 4) Share a #StepUpSelfie that shows your advocacy in action, like walking up the steps of the Capitol building. 5) Use and share the #StepUp Image Bank that has graphics to utilize freely at http://stepupforchildhoodcancer.com/images.html

#gogold

Another question I see often is if I plan on writing a book. The answer to that is yes. I actually started writing when I was pregnant with Kai. The story has changed since, of course. When Kai was first dx’d, I scowered the internet in hopes of finding a blog from another #atrt #warrior parent. I hope that my words will help someone. I don’t know if they will, but I feel the need to put them out there in case there is a parent just like me, looking for answers, looking for someone who understands, looking for hope, looking for anything that tells them that their child is not a statistic. I’ve been writing this whole time. I also have dozens of drafts waiting to be finished and posted on my blog, I plan on working on them as well. Some of the drafts are nearly a year old, things get hectic and I never get a chance to finish them- But sometimes I feel that I can write those posts better now that I have taken a step out of the storm that was happening when I first started writing those drafts, to get a more clear perspective. I want to thank my friends, family, everyone for encouraging me and showing such love. It’s not easy writing about such raw emotional and trying times, but there’s purpose behind my words, & Kai’s story should be told. Thank you for everything. You guys have really helped me keep floating on. Cheers to that 💛 
Much love

#mamateal #gogold #fightforacure  #kaicanmovemountains 

"If a writer falls in love with you, you can never die."
- Mik Everett

Another question I see often is if I plan on writing a book. The answer to that is yes. I actually started writing when I was pregnant with Kai. The story has changed since, of course. When Kai was first dx’d, I scowered the internet in hopes of finding a blog from another #atrt #warrior parent. I hope that my words will help someone. I don’t know if they will, but I feel the need to put them out there in case there is a parent just like me, looking for answers, looking for someone who understands, looking for hope, looking for anything that tells them that their child is not a statistic. I’ve been writing this whole time. I also have dozens of drafts waiting to be finished and posted on my blog, I plan on working on them as well. Some of the drafts are nearly a year old, things get hectic and I never get a chance to finish them- But sometimes I feel that I can write those posts better now that I have taken a step out of the storm that was happening when I first started writing those drafts, to get a more clear perspective. I want to thank my friends, family, everyone for encouraging me and showing such love. It’s not easy writing about such raw emotional and trying times, but there’s purpose behind my words, & Kai’s story should be told. Thank you for everything. You guys have really helped me keep floating on. Cheers to that 💛
Much love

#mamateal #gogold #fightforacure #kaicanmovemountains

"If a writer falls in love with you, you can never die."
- Mik Everett

I love that I feel soft fuzzy hair when I kiss this lovely little head. 
I wish her head was full of brilliant dreams only a stoic little #golden #warrior could dream up. Kai didn’t sleep last night. And she’s not sleeping tonight so far… Her GI symptoms are causing her pain. Pain killers only further complicate the symptoms, so the days are melting into each other since she can’t sleep through the pain. She’s been vomiting a lot, I watch her carefully so she doesn’t choke on her vomit. She has to be turned every two hours to avoid bed sores, which makes it even more difficult for her to slumber. I managed to get a few smiles out of her, though. I made a little fort for her, we are pretending to camp, and I’m telling her stories about a heroic adventurer. You know the story. 

I’ve seen a lot of people asking about Kai’s weight. Kai literally doubled her weight since going in through the PICU in July. The weight is puffiness due to the medications she is on and GI symptoms. She won’t keep this weight on, but it’s nice to see her as a chubby little #cherub. She has always been in the two percentile for weight, always severely underweight which is common for #brain #tumor kids, patients going through #cancer treatment, and #22q13 kids. 

#kaicanmovemountains #gogold #graymatters #fightforacure

I love that I feel soft fuzzy hair when I kiss this lovely little head.
I wish her head was full of brilliant dreams only a stoic little #golden #warrior could dream up. Kai didn’t sleep last night. And she’s not sleeping tonight so far… Her GI symptoms are causing her pain. Pain killers only further complicate the symptoms, so the days are melting into each other since she can’t sleep through the pain. She’s been vomiting a lot, I watch her carefully so she doesn’t choke on her vomit. She has to be turned every two hours to avoid bed sores, which makes it even more difficult for her to slumber. I managed to get a few smiles out of her, though. I made a little fort for her, we are pretending to camp, and I’m telling her stories about a heroic adventurer. You know the story.

I’ve seen a lot of people asking about Kai’s weight. Kai literally doubled her weight since going in through the PICU in July. The weight is puffiness due to the medications she is on and GI symptoms. She won’t keep this weight on, but it’s nice to see her as a chubby little #cherub. She has always been in the two percentile for weight, always severely underweight which is common for #brain #tumor kids, patients going through #cancer treatment, and #22q13 kids.

#kaicanmovemountains #gogold #graymatters #fightforacure

I have boundless gratitude to the medical personnel, parents, family, and friends who go home and lose sleep thinking, “Did I do everything today that I could have within my power to help these children and their families?” 

I think that question nearly all day, every day.

You can also ask yourself this question. You can help paint this world gold. 

#gogold #childhoodcancer #awareness  #fightforacure #fbf with one of our favorite nurses, Ashley 💛

I have boundless gratitude to the medical personnel, parents, family, and friends who go home and lose sleep thinking, “Did I do everything today that I could have within my power to help these children and their families?”

I think that question nearly all day, every day.

You can also ask yourself this question. You can help paint this world gold.

#gogold #childhoodcancer #awareness #fightforacure #fbf with one of our favorite nurses, Ashley 💛

#fbf. That’s the telling face she would give me. The face telling me that something was very wrong. But I couldn’t figure it out. I was perplexed, I didn’t know where to look for answers. Everyone brushed my concerns under the rug. She had more symptoms than a #braintumor infant because of the #22q13 deletion symptoms she has. It’s not like you can go to the pediatrician and pick up a pamphlet on symptoms to look for if your child possibly has a brain tumor. #childhoodcancer needs more awareness, so parents are educated on signs and symptoms for early detection that will save their child’s life. #gogold

#fbf. That’s the telling face she would give me. The face telling me that something was very wrong. But I couldn’t figure it out. I was perplexed, I didn’t know where to look for answers. Everyone brushed my concerns under the rug. She had more symptoms than a #braintumor infant because of the #22q13 deletion symptoms she has. It’s not like you can go to the pediatrician and pick up a pamphlet on symptoms to look for if your child possibly has a brain tumor. #childhoodcancer needs more awareness, so parents are educated on signs and symptoms for early detection that will save their child’s life. #gogold

(#fbf to Halloween of last year.) This is why #childhoodcancer needs more research. Look at this little lady, smiling and care free. You wouldn’t think that at the time of this photo she had a tumor taking up a third of her brain that was slowly taking her life. She was being seen by over a dozen doctors, by several different medical teams. It took me 9 months of fighting with doctors and my insurance company, countless appointments that left me with more questions than answers. It took Kai not being able to eat, cry, losing movement in her face, and having her face and skull puff up from her spinal fluid being blocked and building up inside her brain, for me to finally get her doctor to send an urgent referral for the MRI That found the tumor. #gogold #fightforacure

(#fbf to Halloween of last year.) This is why #childhoodcancer needs more research. Look at this little lady, smiling and care free. You wouldn’t think that at the time of this photo she had a tumor taking up a third of her brain that was slowly taking her life. She was being seen by over a dozen doctors, by several different medical teams. It took me 9 months of fighting with doctors and my insurance company, countless appointments that left me with more questions than answers. It took Kai not being able to eat, cry, losing movement in her face, and having her face and skull puff up from her spinal fluid being blocked and building up inside her brain, for me to finally get her doctor to send an urgent referral for the MRI That found the tumor. #gogold #fightforacure

#fbf to when I let Kai open a present before her birthday party on her first birthday. Just look at her! Such a doll 💘 You know you get all nostalgic when birthdays start to sneak up… She will be the big TWO next month. I now know the love behind the words, “I remember your birth like it was yesterday.” I do remember everything from that day like it was yesterday. And the day she was diagnosed. And the day she was declared cancer free. #kaicanmovemountains #gogold

#fbf to when I let Kai open a present before her birthday party on her first birthday. Just look at her! Such a doll 💘 You know you get all nostalgic when birthdays start to sneak up… She will be the big TWO next month. I now know the love behind the words, “I remember your birth like it was yesterday.” I do remember everything from that day like it was yesterday. And the day she was diagnosed. And the day she was declared cancer free. #kaicanmovemountains #gogold