#IndyStrong

 

GOAL IS $4,000 BY MARCH 11TH, 2018

SO FAR WE'VE RAISED....

$2,248

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Charity- An organization set up to provide help and raise money for those in need.

We can’t believe Londy is already almost 1! Londynn has taught our family a lot in just one short year. She has shown there is still such a bright light in this world, with this being said I know she’d want to celebrate her birthday by giving back to a family that would never ask, yet could really use the help at this time. With saying this we feel so honored to announce we have chosen to celebrate Londynn’s first birthday by donating to a special little girl close to not just our families hearts but also the hearts of the Down Syndrome community. Miss Indy Llew was recently diagnosed with Myelodysplasia. This is a disease of the bone marrow which may eventually lead to leukemia, if left untreated. Myelodyplasia is usually treated and responds best to chemotherapy. If you know Terah and B you know their whole life revolves around little miss Indy. She is their entire world. We are asking that for Londynn’s birthday celebration you don’t shower her with gifts yet we would love to have you donate to Indy’s family in this time of need. We understand we can’t take away all of the pain yet we would like to help relieve some of the financial burden. We will be celebrating Londynn‘s birthday event March 10th, 2018. This event will be a charity event for the Jones Family! We will have raffles, yummy food, bounce houses, and lots of other fun stuff. If you’d like an invite please let us know. You will be able to donate at the event to receive raffle tickets as well as on here. Once again we feel so honored and can’t wait to celebrate Londynn turning one in the best way yet!

TO DONATE TO INDY LLEW PLEASE CLICK HERE


UPDATES

You can follow Indy's journey on either Instagram or Facebook.

 I’ve been staring at this screen for a while now, trying to type my thoughts into words. What do I share, how do I share it... Our baby girl did great during her MRI today. Our preliminary results were positive- nothing urgent or obvious. But 30 minutes later we got a call from the doctor, asking us to bring Indy to the hospital for admission. The last few days we have seen the muscles and nerves of her eyes being negatively affected by the swelling, preventing her from focusing well and causing her to be cross eyed at times. What they found in addition to the swelling, is pockets of atypical cells in her facial tissues and the marrow of her facial bones. This is consistent with MDS & leukemia. In order to prevent permanent damage to her eyes or face, treatment needs to be started immediately. Indy will start her first round of chemotherapy in the morning💔. She will have several procedures first. I am scared and heartbroken. But we have felt a strange sense of peace & an assurance that we are doing the right thing for Indy’s current situation. We have done EVERYTHING in our power to get a hold of this at home. I have put all of my energy, heart, and soul into helping her heal. Some things are out of our hands though. So we have to just turn it over and trust the process. I know so many of you genuinely love Indy. I know this is going to be a hard road to travel for more than just me & B. Our miracle will be for Indy to be healed entirely and make it through chemotherapy safely. Please pray for that with us. Faith and prayer have carried us this far & we know it will continue. we will update as much as we can. Much Love ❤️  #indyllew   #weloveyou  #prayforindy   #amillionprayers   #Heislistening

I’ve been staring at this screen for a while now, trying to type my thoughts into words. What do I share, how do I share it... Our baby girl did great during her MRI today. Our preliminary results were positive- nothing urgent or obvious. But 30 minutes later we got a call from the doctor, asking us to bring Indy to the hospital for admission. The last few days we have seen the muscles and nerves of her eyes being negatively affected by the swelling, preventing her from focusing well and causing her to be cross eyed at times. What they found in addition to the swelling, is pockets of atypical cells in her facial tissues and the marrow of her facial bones. This is consistent with MDS & leukemia. In order to prevent permanent damage to her eyes or face, treatment needs to be started immediately. Indy will start her first round of chemotherapy in the morning💔. She will have several procedures first. I am scared and heartbroken. But we have felt a strange sense of peace & an assurance that we are doing the right thing for Indy’s current situation. We have done EVERYTHING in our power to get a hold of this at home. I have put all of my energy, heart, and soul into helping her heal. Some things are out of our hands though. So we have to just turn it over and trust the process. I know so many of you genuinely love Indy. I know this is going to be a hard road to travel for more than just me & B. Our miracle will be for Indy to be healed entirely and make it through chemotherapy safely. Please pray for that with us. Faith and prayer have carried us this far & we know it will continue. we will update as much as we can. Much Love ❤️ #indyllew #weloveyou#prayforindy #amillionprayers #Heislistening

 We had a few good hours & smiles today 💗. Indy had several surgical procedures Saturday morning so the last few days have been spent recovering. They took a biopsy of a bone in the left side of her face, so she has this cute little lop-sided chipmunk smile going on. She is being a very strong girl, but things have been a little rough. Her pain & nausea are breaking my mom heart. At times I feel sostrong, and other times I feel so weak- and wonder how we are ever going to make it through this. Me & Indy are so lucky to have B. He is always strong for the three of us. We should know more tomorrow, but so far the plan is about 6 months of inpatient chemotherapy. *we can do it we can do it we can do it*. Thank you for your continued prayers on our behalf. Indy is such a special girl, I wish she didn’t have to go through this. But here we are.... this is happening, so we need to face the storm and hold on tight until it passes. Praying for strength. Praying for Indy.  #indyllew   #weloveyou   #prayforindy  #ourbravegirl

We had a few good hours & smiles today 💗. Indy had several surgical procedures Saturday morning so the last few days have been spent recovering. They took a biopsy of a bone in the left side of her face, so she has this cute little lop-sided chipmunk smile going on. She is being a very strong girl, but things have been a little rough. Her pain & nausea are breaking my mom heart. At times I feel sostrong, and other times I feel so weak- and wonder how we are ever going to make it through this. Me & Indy are so lucky to have B. He is always strong for the three of us. We should know more tomorrow, but so far the plan is about 6 months of inpatient chemotherapy. *we can do it we can do it we can do it*. Thank you for your continued prayers on our behalf. Indy is such a special girl, I wish she didn’t have to go through this. But here we are.... this is happening, so we need to face the storm and hold on tight until it passes. Praying for strength. Praying for Indy. #indyllew #weloveyou #prayforindy#ourbravegirl

It’s been a really good 24 hours ❤️. I want to document this experience & my feelings well- so I will try to post as much as I can. After a heart wrenching & very hard day Monday, these 24 hours have given me strength to keep going. A little recap 🤗 Indy can’t leave her room without a mask on due to risk of infection. She is such a sweetheart & doesn’t seem to mind at all. This morning we took a walk around the unit & she walked so far! Showing off for all the nurses I’m sure. She has been energetic, happy, playful... so energetic in fact, that she wanted to play all night long instead of sleep. (See attached video...😍 my girl. The way she says Daa-EY! [daddy] & that crazy hair). She is the star of the unit- nurses coming in just because they heard how cute she was & needed to meet her 💗. Every person that walks in the door comments on her adorable pony tail, then my eyes fill with tears because that adorable ponytail won’t exist for much longer 💔. But until then, we are living it up & even wore a bow today. We are getting more comfortable here, our new home away from home. [Watch our Insta stories for more of the day to day.] I truly feel like we are being lifted up by the thousands of prayers being sent to heaven on our behalf. Our capacity to handle this seems beyond our own ability. We are so thankful ❤️. I know we will have good days and hard days, but we will live in every good moment & find joy. It’s Hard not to be happy around Indy Llew 😇. #indyllew#weloveyou #prayforindy #ourbravegirl

 Time for our happy news!! Indy Llew finished her first round of chemotherapy last night 🎉. The happy part is that she has tolerated it very well for the most part, and seems to be feeling great. She is so happy and full of energy. Still so much energy that she thinks she doesn’t need sleep 💁🏻‍♀️ chemo is supposed to make you tired.. not this girl! Now we wait. We have to stay here for 2-3 weeks to watch her & make sure she doesn’t get an infection, because her cell counts will all be dropping very low in the next several days. We are praying for a very BORING stay (no infections 🤞🏻🙏🏻). Otherwise we plan to have a very fun stay- discovering every single thing we can do inside these 4 walls. Things will go like this- here for 3-4 weeks, home for 1 week, Back for 3-4, home for 1, x 5 rounds. So we will get a little break in between each round. Still so much to wrap my head around. BUT. I could not be more thankful that she has tolerated everything so well. Happy tears ❤️. I know with all my heart that the thousands of prayers being offered on her behalf are being answered. Not in the way I originally hoped, but having them answered this way is our new miracle. I could not be more grateful today. {((Thank You))} ❤️.  #indyllew   #weloveyou   #prayforindy  #ouramazinggirl

Time for our happy news!! Indy Llew finished her first round of chemotherapy last night 🎉. The happy part is that she has tolerated it very well for the most part, and seems to be feeling great. She is so happy and full of energy. Still so much energy that she thinks she doesn’t need sleep 💁🏻‍♀️ chemo is supposed to make you tired.. not this girl! Now we wait. We have to stay here for 2-3 weeks to watch her & make sure she doesn’t get an infection, because her cell counts will all be dropping very low in the next several days. We are praying for a very BORING stay (no infections 🤞🏻🙏🏻). Otherwise we plan to have a very fun stay- discovering every single thing we can do inside these 4 walls. Things will go like this- here for 3-4 weeks, home for 1 week, Back for 3-4, home for 1, x 5 rounds. So we will get a little break in between each round. Still so much to wrap my head around. BUT. I could not be more thankful that she has tolerated everything so well. Happy tears ❤️. I know with all my heart that the thousands of prayers being offered on her behalf are being answered. Not in the way I originally hoped, but having them answered this way is our new miracle. I could not be more grateful today. {((Thank You))} ❤️. #indyllew #weloveyou #prayforindy#ouramazinggirl

 Earlier this week B & I were talking about our future for the next 6-12 months. B says, I think I should learn to play the guitar. I’ve been feeling that way for a few weeks now. It was one of those “I was thinking the same thing!” moments, because I had just had that thought. We decided that we are going to learn to play the guitar together while we’re stuck in here. Let me tell you the awesome parts of this story though: we went for a walk one evening in the hospital. We stumbled across a studio room where people were playing the guitar. They were volunteers, who come to play, entertain, or teach music lessons to patients & families! No way right? So B & I have already taken our first lesson 🎼. Even sweeter though is that when B went to buy our guitars, the shop owner inquired about our story- and gifted us a baby guitar with a case for Indy Llew 💕 I guess we are officially a guitar playing family. Indy plays the best by far.... (see next video post) we didn’t even teach her what to do! She grabbed the guitar pick & started strumming & melting our hearts. You can tell she is just so proud of herself. Can’t wait to see where this goes... maybe the three of us can go on tour after this is all over 😉.  #indyllew   #weloveyou   #prayforindy   #ourlittleguitarplayinggirl  #guitarplayingfamily

Earlier this week B & I were talking about our future for the next 6-12 months. B says, I think I should learn to play the guitar. I’ve been feeling that way for a few weeks now. It was one of those “I was thinking the same thing!” moments, because I had just had that thought. We decided that we are going to learn to play the guitar together while we’re stuck in here. Let me tell you the awesome parts of this story though: we went for a walk one evening in the hospital. We stumbled across a studio room where people were playing the guitar. They were volunteers, who come to play, entertain, or teach music lessons to patients & families! No way right? So B & I have already taken our first lesson 🎼. Even sweeter though is that when B went to buy our guitars, the shop owner inquired about our story- and gifted us a baby guitar with a case for Indy Llew 💕 I guess we are officially a guitar playing family. Indy plays the best by far.... (see next video post) we didn’t even teach her what to do! She grabbed the guitar pick & started strumming & melting our hearts. You can tell she is just so proud of herself. Can’t wait to see where this goes... maybe the three of us can go on tour after this is all over 😉. #indyllew #weloveyou #prayforindy #ourlittleguitarplayinggirl#guitarplayingfamily

 Indy Llew was feeling pretty nervous about all the people coming in to check on her. Any time someone walked in the room wearing scrubs or carrying a stethoscope she buried her face in our chest & started crying. Bless her sweet heart 💕. A child life specialist came in & helped Indy see that there was nothing to be afraid of, letting her play with the stethoscope listening to her fuzzy buddy and mom & [Daa-Ey!]. She has been very brave ever since. I am so proud of my girl. She greets everyone with a smile, gives bones, and waves bye when they leave the room 💗. We are getting more used to our tiny temporary home. Mostly I am SO so grateful that Indy is tolerating things so well. Her doctor today said he anticipates she will tolerate every round well because the first is usually the hardest. 🙏🏻 so much comfort to my heart. She is rocking this. We love you guys, thank you for your supportive comments & prayers!  #indyllew   #weloveyou   #prayforindy   #ourbravegirl

Indy Llew was feeling pretty nervous about all the people coming in to check on her. Any time someone walked in the room wearing scrubs or carrying a stethoscope she buried her face in our chest & started crying. Bless her sweet heart 💕. A child life specialist came in & helped Indy see that there was nothing to be afraid of, letting her play with the stethoscope listening to her fuzzy buddy and mom & [Daa-Ey!]. She has been very brave ever since. I am so proud of my girl. She greets everyone with a smile, gives bones, and waves bye when they leave the room 💗. We are getting more used to our tiny temporary home. Mostly I am SO so grateful that Indy is tolerating things so well. Her doctor today said he anticipates she will tolerate every round well because the first is usually the hardest. 🙏🏻 so much comfort to my heart. She is rocking this. We love you guys, thank you for your supportive comments & prayers! #indyllew #weloveyou #prayforindy #ourbravegirl

 I took this picture the day before Indy got sick, 10 weeks ago. These 10 weeks... oh boy. The emotional pain, the fear, the exhaustion- they have been immense. But that is not where my mind goes when I look back at what this experience has brought us so far. What I see is people coming together by the THOUSANDS, to love & lift a little girl who needs it. Thousands of people from all around the world. People of every faith, religion, non-religion, culture, & continent- coming together in love to support one little girl. It has been incredible & extremely humbling to witness. I have never lived anything quite so tender and powerful. It leaves me in awe, B & I feel absolutely privileged to witness such a compelling kind of unity and love 💗.  This beautiful sweater that Indy is wearing was made for her by one of our followers all the way in Iceland. She has never met Indy, but fell in love with her through this online space like most of you here. Since Indy became sick we have received so many thoughtful & heartfelt gestures. Indy has been sent pendants from Rome that were blessed by the Pope. A bottle of Holy Water straight from the grotto in Lourdes, France. Her name was placed in the Wailing Wall in Jerusalem 🙏🏻. She has been placed on many Parrish prayer rolls, every LDS Temple prayer roll in the state of Utah and more across the world, prayed for at Mass, prayed for to Allah, prayed for in bible study groups, prayed for by people who normally don’t pray, and more. I can’t stop tears from filling my eyes as I write this. Indy’s impact is greater than I can even understand. She is a beautiful & powerful spirit that radiates so much Love & Light throughout this world. And we get to be her parents 💗. Thank you- all of you- for coming together to love and pray for our little girl. It means the world to us. Much love 😊  #indyllew   #weloveyou   #prayforindy   #ouramazinggirl  #thislittlelight

I took this picture the day before Indy got sick, 10 weeks ago. These 10 weeks... oh boy. The emotional pain, the fear, the exhaustion- they have been immense. But that is not where my mind goes when I look back at what this experience has brought us so far. What I see is people coming together by the THOUSANDS, to love & lift a little girl who needs it. Thousands of people from all around the world. People of every faith, religion, non-religion, culture, & continent- coming together in love to support one little girl. It has been incredible & extremely humbling to witness. I have never lived anything quite so tender and powerful. It leaves me in awe, B & I feel absolutely privileged to witness such a compelling kind of unity and love 💗. 
This beautiful sweater that Indy is wearing was made for her by one of our followers all the way in Iceland. She has never met Indy, but fell in love with her through this online space like most of you here. Since Indy became sick we have received so many thoughtful & heartfelt gestures. Indy has been sent pendants from Rome that were blessed by the Pope. A bottle of Holy Water straight from the grotto in Lourdes, France. Her name was placed in the Wailing Wall in Jerusalem 🙏🏻. She has been placed on many Parrish prayer rolls, every LDS Temple prayer roll in the state of Utah and more across the world, prayed for at Mass, prayed for to Allah, prayed for in bible study groups, prayed for by people who normally don’t pray, and more. I can’t stop tears from filling my eyes as I write this. Indy’s impact is greater than I can even understand. She is a beautiful & powerful spirit that radiates so much Love & Light throughout this world. And we get to be her parents 💗. Thank you- all of you- for coming together to love and pray for our little girl. It means the world to us. Much love 😊
#indyllew #weloveyou #prayforindy #ouramazinggirl#thislittlelight

 This little love... she is capturing the hearts of everyone who sees her in this hospital. She draws a crowd as she cruises down the hall in her bright purple walker. Her doctors all love her, asking if they can take her home & “man I’m going to miss seeing her everyday when I’m off next week”. Nurses come in just to see her so they can get their dose of happy. Her therapists have all said they’re not going to share her with the other therapists. It warms my heart 💗. If we have to be here, I’m glad Indy gets to share her light with the wonderful people who work here. She is such a radiant bundle of joy. And her piggies yesterday had me just 😍. Living up every second we have with her darling head of hair. Today we had appointments with PT, OT, speech therapy, and music therapy. Indy did amazing with each visit. The joy in her face during Music therapy though was precious- and her dance moves were pretty stellar too. We get all of these services three times a week while we are in here! What a deal. She’s gonna be killing it in all arenas by the time this is all over 💪🏻. Good job baby girl, we are so proud of you. #indyllew   #weloveyou   #prayforindy   #ourbrightgirl

This little love... she is capturing the hearts of everyone who sees her in this hospital. She draws a crowd as she cruises down the hall in her bright purple walker. Her doctors all love her, asking if they can take her home & “man I’m going to miss seeing her everyday when I’m off next week”. Nurses come in just to see her so they can get their dose of happy. Her therapists have all said they’re not going to share her with the other therapists. It warms my heart 💗. If we have to be here, I’m glad Indy gets to share her light with the wonderful people who work here. She is such a radiant bundle of joy. And her piggies yesterday had me just 😍. Living up every second we have with her darling head of hair. Today we had appointments with PT, OT, speech therapy, and music therapy. Indy did amazing with each visit. The joy in her face during Music therapy though was precious- and her dance moves were pretty stellar too. We get all of these services three times a week while we are in here! What a deal. She’s gonna be killing it in all arenas by the time this is all over 💪🏻. Good job baby girl, we are so proud of you.#indyllew #weloveyou #prayforindy #ourbrightgirl

 I think sparkly tassels are a must ✨ One of our followers messaged me tonight and said “I look for updates every day, so when you’re silent my heart breaks a little. I hope you had a good day.” ❤️ seriously, the love we feel from you guys... today was a good day. Indy needed a platelet transfusion this morning, which she had an allergic reaction to and broke out in hives. All of these experiences are just overwhelming to me still. I have been here so many times as the nurse- the one giving the blood & platelet transfusions, the one telling the mom “everything’s fine, this happens a lot” when the child has a reaction- but being the mama... boy it changes everything. Indy is so amazing though. Not a single complaint from her about any of this. Just a chill little smiling pill making everyone around her happy. NO MATTER WHAT. I have so much to learn from her 💗. Her hives went away & all is well.  We are going to do an Instagram live tomorrow at some point (I will share it to our Facebook page after), straight from our little hospital room. If you have any specific questions you would like me to answer write them below 😊.  #indyllew   #weloveyou  #prayforindy   #ourbravegirl   #indy500

I think sparkly tassels are a must ✨
One of our followers messaged me tonight and said “I look for updates every day, so when you’re silent my heart breaks a little. I hope you had a good day.” ❤️ seriously, the love we feel from you guys... today was a good day. Indy needed a platelet transfusion this morning, which she had an allergic reaction to and broke out in hives. All of these experiences are just overwhelming to me still. I have been here so many times as the nurse- the one giving the blood & platelet transfusions, the one telling the mom “everything’s fine, this happens a lot” when the child has a reaction- but being the mama... boy it changes everything. Indy is so amazing though. Not a single complaint from her about any of this. Just a chill little smiling pill making everyone around her happy. NO MATTER WHAT. I have so much to learn from her 💗. Her hives went away & all is well. 
We are going to do an Instagram live tomorrow at some point (I will share it to our Facebook page after), straight from our little hospital room. If you have any specific questions you would like me to answer write them below 😊. #indyllew #weloveyou#prayforindy #ourbravegirl #indy500


EVENT DETAILS

Location: 439 S Pleasant Grove Blvd, Pleasant Grove, UT 84062

TIME: 1:30PM - 5:00PM

DATE: MARCH 10TH, 2018

RSVP: LIVINGWITHALITTLEEXTRA@GMAIL.COM

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EVENT SCHEDULE

1:30PM - 3:30PM

3:30PM - 4:30PM

CATERING/FOOD

4:30PM - 4:45PM

CAKE SMASH

VIDEO

4:45PM - 5:00PM

RAFFLE/DRAWING

 

 

 

 

 

THIS EVENT IS SPONSORED BY

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