mare
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Posts: 2,517
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Post by mare on Aug 21, 2020 7:02:49 GMT -5
I'm sorry. Please let us know if we can do anything.
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Post by maurinsky on Aug 21, 2020 12:27:58 GMT -5
Thank you everyone for your good thoughts and prayers. She is in the oncology unit on beta blockers right now - she had been in the ICU. The tumor on her adrenal gland is very large, and they can't biopsy it until they can ensure the biopsy won't trigger adrenaline to be released. She is uncomfortable but has refused any sort of pain medication. She looks good and has been chipper when we have video chats - lots of giggling with her sister.
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Post by villanelle on Aug 21, 2020 18:55:13 GMT -5
Can you remind me how old both girls are, please?
I think of you and your family every day.
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Post by maurinsky on Aug 21, 2020 21:21:03 GMT -5
Can you remind me how old both girls are, please? I think of you and your family every day. They turned 4 on July 16. She had a rough day today. Her oxygen levels were dropping, and she said she wanted to go home. They do think her BP will be in the right place on Monday so that is when they are planning to biopsy.
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Post by Sprockey on Aug 22, 2020 6:32:16 GMT -5
keeping you all in my thoughts. I would also like the link to her Fund account ❤
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Post by jen on Aug 22, 2020 13:54:58 GMT -5
My mind boggles at how scared you all must be
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Post by niccikatie on Aug 22, 2020 14:05:18 GMT -5
I'm sure this is very scary for her, too. My nephew had an extended hospitalization for a critical illness when he had just turned 6 and it was so difficult for him. You all continue to be in my prayers.
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Post by Eli on Aug 22, 2020 19:09:01 GMT -5
I have been keeping you all in my thoughts. Please post a link to the go fund me if you wish.
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Post by maurinsky on Aug 22, 2020 21:46:29 GMT -5
Thanks everyone - we haven't set up the Go Fund Me yet, but I will share it when we get there.
Fionnuala has a lot of fans in the hospital. They are trying to get her to eat more protein and she told them "protein is tricky for me", but they figured out a solution: egg drop soup, which she eats for breakfast in the morning now!
They have brought her BP down but not quite enough yet - they are currently aiming to do the biopsy by Wednesday. Doug went home yesterday because he has to physically be at his job next week, but Maeve and I are still here, and we decided we're going to stay until we get the results of the biopsy and the plan of action that will follow. Siobhan said the medical team are divided about whether it's pheochromacytoma (which would be unusual for a child her age) or a neuroblastoma. Oh, what a team! They have nurses, nephrologists, a social worker, a family therapist, endocrinologists, oncologists, surgeons...
Ceilidh makes it easier to stay chipper - she misses her sister and they video chat every day, but she is delightful and we're having fun with her. She has had one on one time with Jason and Siobhan (one of them comes home every day to get food, clothes, anything else that might be needed) and to play with/read to/snuggle with Ceilidh. But it's hard. She is especially happy to have Auntie Maeve here.
ETA: They are not going to do a biopsy, because if it's pheochromacytoma, they must remove the tumor regardless of the status of the tumor. So they are giving her the meds to turn off the receptors so they can remove it safely.
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Post by maurinsky on Aug 23, 2020 13:34:20 GMT -5
They have postponed surgery again. Her BP is still not under control. This is a catch 22 situation - they have to remove the tumor to get her blood pressure under control, but while it's still in place it's firing off adrenaline and bumping up her BP. She is on meds but it's going to be a while still.
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Post by kimbelina on Aug 23, 2020 13:49:14 GMT -5
I'm keeping you and your family in my thoughts. I'm glad you are able to be there for them in person (hugs)
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Post by Sprockey on Aug 23, 2020 17:51:37 GMT -5
thanks for the continued updates. i keep checking ((hugs))
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Post by stellarfeller on Aug 23, 2020 18:52:43 GMT -5
Thinking of you all ❤️
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Post by justthinking on Aug 24, 2020 8:27:19 GMT -5
I only just saw this. I am so sorry maurinsky! Praying for all the best possible outcomes for every single procedure and treatment. ((Hugs))
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mare
Full Member
Posts: 2,517
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Post by mare on Aug 24, 2020 10:44:16 GMT -5
I hope things stabilize soon. *hugs*
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Post by maurinsky on Aug 24, 2020 16:27:44 GMT -5
She was moved from ICU to PIC-U, but I think she's going back to ICU - Siobhan is okay with it, because she said there was a distinctive change in quality of health care service when they moved. Her BP is down but not low enough yet.
Siobhan came home today and we had another hug and cry session, she, Maeve and I all together. She is currently napping with Ceilidh before she goes back to the hospital tonight. She said Fionnuala is developing an attitude because she feels fine and she's tired of being poked and prodded. The tumor is really big - bigger than her liver - and is pushing her other organs out of the way. It is also wrapped around an artery, so when they go in to remove it, they will need to "debulk" it so they don't cause more problems.
I'm trying to will the universe to lower her BP.
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Post by Eli on Aug 24, 2020 19:12:19 GMT -5
Ugh, Maur- will send all the good thoughts I can to lower her BP. I keep checking in and thinking of you all.
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Post by niccikatie on Aug 24, 2020 19:38:42 GMT -5
That's so much. Poor kiddo. Praying for lower BPs.
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Post by maxmammy on Aug 24, 2020 21:50:00 GMT -5
I’m so sorry your family is going through this 😞. Please share the go fund me link when you can. I’ll continue to send peace your way ❤️
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Post by Sprockey on Aug 25, 2020 12:37:23 GMT -5
this is all so dreadful 😭😭
Thinking of you all and waiting on that good news!
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