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!

 
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Clinic Visit

Overall Ella Claire’s clinic visit went pretty well. She had a few of the normal tests done and her regular chemo meds taken. She’s still having some pain with there area where her tube is, it looks a bit pretty aggravated. Her doctors looked at the site and decided to go ahead and culture it just to be safe, as well as send the fluid that was drained from around her lung to be tested again. She had 150mls drained and it just looked a little different than it has been so once again, just to be safe! We also spoke with the nutritionist and have a plan for trying to make sure she’s not losing too much weight. She’s the “Milkshake Queen” so I’m sure that will not be too much of a problem 🙂 
Please just continue to pray for our little Princess Diva. She doesn’t like her “new noodle”, but she is still just trying her best to go about her day as if all is OK! Love to ALL!

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Sunday events …

Just to update everyone on the events of the weekend through Sunday. Miss Ella Claire hasn’t felt very good and was nauseated most of the weekend. This morning we noticed that the site her catheter enters her side for her lung was red and irritated. After talking with her nurses, we took her to Children’s ER and with antibiotics given, we are back home. We have to go back on Tuesday for her regular weekly check up and chemo. She has finally ate a grilled cheese and some french fries as well.

To view previous posts, visit Miss Ella Claire’s Blog Update.


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Weekly Update

Just wanted to give a little update 🙂
Ella Claire has really had a pretty good week. Her nurse is WONDERFUL and comes to see her twice a week. Both times she said that Ella Claire sounded great. Her clinic visit Tuesday went well also. They did not drain as much as we had drained at a time last week, they did an x-ray to make sure nothing was clogged and all was great. She was able to make it half way through her dance class this week before the drain tube started to bother her, that’s actually a plus. She’s learning how to maneuver with it and it is not slowing her down much at all! I’ve learned to just wake up each day not expecting anything and taking it all just one day at a time.

If you would like to view previous post, click Miss Ella Claire’s Blog Update.


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Saturday

It has been so nice being home from the hospital! Ella Claire was still pretty tired yesterday but that was to be expected. This morning she woke up super happy and was in great spirits mostly all day. Ella Claire has laughed and played and enjoyed some visitors as well! Thank you all for your prayers! I know I myself could not make it without,


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Late Thursday Update …

Wanted to let everyone know, Miss Ella Claire is now at home! Thank you again to everyone for all the prayers this week. Please continue praying for her, pain from the surgery and still a slight cough. We will have comfort care nurses coming to help keep a check on her in between Tuesday Children’s Hospital visits.

We can’t thank everyone enough for all the prayers and love shown to our family during this past week and throughout this past year. Please continue to hold us up in your prayers.

If you would like to view previous post, click Miss Ella Claire’s Blog Update.


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Mid Week Update

Just wanted to give an update on Miss Ella Claire. She slept much better last night and woke up on her own this morning a little happier, more like her usual self. Dan and I did learn how to and actually did the draining yesterday and it went well. We will have someone come and “oversee” us doing that again today as well. For now our plan is to make sure her pain is kept under control and spacing her pain meds out farther today and to make sure we are both comfortable with the fluid draining process. She is napping now, we are just letting her do her own thing of what and when she’s wanting to eat, sleep, and play. Just help us to continue to pray for her and that she can come off of the IV pain meds soon for us to be able to go back home.
Love to All~ Lori 🙂

To view previous posts, click Miss Ella Claire’s Blog.


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Tuesday Morning …

Just ordered breakfast and did chest X-ray. Watching Mickey Mouse. We’re alternating her pain meds and Tylenol every 2 hours to help with pain today. She’s really hurting this time. Which she had two pretty big surgeries on the same side and area pretty close together. Today’s more of a learning / pain management / resting day as far as a hospital goes.

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Late Monday Post …

Was not much to update throughout the day, other than it was a long day of waiting. We don’t know what all the reasons for the wait may have been, emergency that may have come up or other issues, but none had anything to do with Miss Ella Claire. They took her to surgery around 3:30pm and she was back in her room around 6pm. The surgery went good and she has rested since. They did drain more fluid off her right lung during the surgery. The Pleurxcatheter was placed and now we start the process of learning how to use the catheter.

Please continue to pray for Miss Ella Claire and her family.

To view previous posts, click Miss Ella Claire’s Blog.


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Monday Update … One of several

Miss Ella Claire slept ok last night, she had to get Tylenol around 4:30 this morning.

She is having a procedure this morning, originally scheduled for around 7:00am, but has been moved to around 11:45am. Please continue to pray for her.

We will post updates as we are able.

To view previous posts, click Miss Ella Claire’s Blog.


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Sunday Evening…

Ella Claire had a pretty good night last night and thankfully no oxygen was needed. She had her x-ray this morning and we found out that the fluid around her lung was already back at 25%-50%. She is being worked into surgery tomorrow to have a Pleurxcatheter put in for us to be able to drain the fluid at home. Please help us pray for her and all of her medical staff and this will provide some answer of help as well. As for now, she is eating M&M’s and drinking as much as she can before being cut off for the night 🙂

To view previous posts, click Miss Ella Claire’s Blog.


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Saturday, Sept 21

As you know from a previous blog post, Miss Ella Claire had to stay overnight at Children’s Hospital Friday night. As with any usual hospital visit, she runs the show at Children’s. However, during the night Friday night, during her sleep, she had to have some oxygen put on her due to her oxygen level dropping. On Friday, even sitting down at times, her oxygen level was getting lower. On Saturday morning, they drained fluid, approximately 23 ounces, from her right lung and took an x-ray immediately afterwards. They will be taking another x-ray on Sunday and then again on Monday to determine the amount of fluid, if any, builds back in her lung. There are other tests and procedures that may take place during this time as well.
 
As of now, she is back in charge and running the hallways as usual.
 
Please continue to keep Miss Ella Claire, her parents and her family in your prayers. Also, be in prayer for the wonderful doctors and nursing staff that are caring for her at Children’s Hospital.
 
To view previous blog posts, click Miss Ella Claire’s Blog.

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Fun pictures…

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Evening Update

Well…. back to the clinic today!

Ella Claire woke up yesterday morning (Thursday) sounding a bit worse so they wanted to have her checked out before going into the weekend. After some tests and an x-ray her Dr. decided to have her admitted for the weekend. They found that there was more fluid in her lung just since this past Monday and her oxygen level was down to 85 while walking around. Tomorrow she is going to have the fluid drained from lung and then more tests Monday to make sure the fluid doesn’t come back too quickly. Thank you ALL for all of your prayers and love!

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And on the sixth day…

As with the entire treatment for Miss Ella Claire, things don’t always go as planned. She started coughing Sunday evening and woke up this morning (Monday) still with the cough. So, mom and dad contacted their wonderful medical team at Children’s, which decided to get her on into clinic today, instead of waiting until Tuesday. This was being done out of extreme caution. Miss Ella Claire is being treated with some allergy medicine and was able to go ahead and get her chemo treatment today. As of now, she doesn’t have to go back any this week.

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Three Days In…

Well after three days of being on the new treatment/medicine, so far so good. She does not like taking the medicine, but what two year old does right?! HA! Our little Warrior Princess is still her sassy, fun, energetic, DIVA self! We are so thankful she’s still acting like herself so far and we are just going to keep taking it one day at a time and LOVING EVERY precious moment we can!

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