Miss Ella Claire
 
June 7th, 2018 Ella Claire was diagnosed with Stage 4 Alveolar Rhabdomysarcoma (ARMS). She went through her 54 weeks of treatment, and just as we were hopeful our ending was near, the cancer returned. August 27th, 2019 we found out that Ella Claire now has tumors in her right lung. She is now starting a new treatment. We will use this blog to help keep all her family, friends, and loving support system updated.
 
 
If you would like to give to the family, you can do so by going to the “Give” tab above through the Secure Online Portal (You can give as GUEST) or give through PayPal, please put Ella Claire in the notes section. You can also use their personal PayPal, lorilykennedy@gmail.com.
 
 

Thank you ALL for your Prayers, Love, and Support you have all shown to this Precious family thus far on their journey!

 
If you would like to signup for Email Updates for Miss Ella Claire’s Blog, you can do so here or at at the bottom of this blog page. Also, please click on the title of the blog post for the full post, as well as being able to leave the family a word of encouragement or comment.

Princess Warrior

It is with heavy hearts that we share that Ella Claire passed away this morning  (Feb 13).

Her trademark statement- “I want something that I want” still makes us laugh. And now we realize she has everything that she needs!

Her sweet spirit has made a mark on us all. Her fighting spirit which earned her title, “Princess Warrior” is an example for us to never give up.

Our forever gratitude to friends and family who joined Team Ella Claire on her journey.
Much love to each of you!


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Day to day

Even though we have seen several physical changes, there are still some constants that we hold on to.

 

Ella Claire is still the boss! Her favorite statement: “I want something that I want!” and then it becomes her ‘people’s’ job to discover what she needs.

 

The world is on Ella Claire time! If you are visiting, you leave when she wants you to leave.

 

Ella Claire ALWAYS ALWAYS wants to help the nurses. She has such a helpful spirit even when feeling so bad.

 

Ella Claire has made her mark on so many hospital employees! She gets visits from all over, coming to check on her and give her a smile, a hug, a pat.
So much love…

 

Ella Claire has begun sleeping more; her body is so tired! She is on maximum oxygen and the presumption is there is no function in the right lung which makes breathing harder. They have reduced fluids to relieve the work of the kidneys.

 

The amazing and caring medical staff continue to find solutions to keep Ella Claire comfortable, a wonderful example of teamwork for the care of a child. So. Very. Grateful.

 

We covet your prayers and love over the next few days, prayers for Ella Claire’s comfort, for her to feel the love and care of her family and friends, for strength and wisdom and courage.
 

“Love bears all things, believes all things, hopes all things, endures all things.” I Cor. 13:7
 
To veiw previous post, visit Miss Ella Claire’s Blog.
 
Many have asked about helping the Kennedy family financial, to do so, please visit CV Online Giving or CV PayPal Giving. Be sure to notate Miss Ella Claire.


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Hamburger Noodles!

“Every day may not be good but there is good in every day.” Today? Noodles! Miss. Ella Claire requested noodles and she received a double portion! She continues to enjoy watching Sing!, Aladdin, and Mickey Mouse Clubhouse, often on a loop. She is surrounded by her unicorn collection, her “corn’corns.” When she feels like it she colors or does stickers. But mostly, watches her favorite movies.
 
 
The medical staff have had to consistently increase her pain meds as well as her oxygen levels. Their goal is to find the best comfort level for Ella Claire. We don’t have a time frame, so every day is taken as it comes. For these reasons, we are asking for visits to be limited to family only right now. Our family is so very comforted by the outpouring of prayers and texts of concern and love; they are our sustenance. We love you all in ways we cannot adequately express.
 
 
As always, we covet your prayers for: God’s presence to be made real; strength for today; for His guidance for the medical staff; for Ella Claire’s comfort and peace,

 

From Pastor Andy ~ We have had numerous request on how to help the Kennedy family financially. You can give online at {http://cvcog.church/give} or {http://cvcog.church/PayPal}. Make sure you choose ‘Miss Ella Claire’ or notate ‘EC’. Monies given will go towards anything Miss Ella Claire needs, food and snacks, as well as utilities and other financial needs for the family as well.

 

To view previous blog post, click HERE.

 
 
 
Ella Claire and her PaPa
 
 
 
 
 
 

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Make Today Count

“Make today count.” Each day brings new mercies and new challenges. The continued care from the staff at Children’s is simply amazing! We are so grateful for all they are doing to help and love Ella Claire and all her family as well.

We are having to drain her lung twice each day which is not a fun thing for Ella Claire. Her pain has increased tremendously and a pain drip has been started, which will hopefully enable us to keep her as comfortable as possible. She tires out easily and so watches a lot of movies. She has enjoyed visits from “my people” (family and hospital staff) and enjoys telling them all what to do. She even asked the oncology chaplain, aka, Man, to pray with her. Ella Claire is keeping her world in order!

These days are precious and hard, full of love and tears. Thank you for your continued prayers – for strength, for comfort, for peace.


From Pastor Andy ~ We have had numerous request on how to help the Kennedy family financially. You can give online at {http://cvcog.church/give} or {http://cvcog.church/PayPal}. Make sure you choose ‘Miss Ella Claire’ or notate ‘EC’. Monies given will go towards anything Miss Ella Claire needs, food and snacks, as well as utilities and other financial needs for the family as well.

Thank you for your continued prayers for the Kennedy Family. May God Bless you!!!

To view previous blog post, click HERE.


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