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| chase6 |
 Posted: Tue Jan 01, 2013 3:23 pm |
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ORDER OF THE SKULL
Joined: 20 Feb 2010
Posts: 211
Location: San Diego
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Happy Holidays, Merry Christmas and Happy New Year! Thank you all for your support over the last year. It is truly appreciated by my family and I.
Lyla is doing awesome! She had her port removed at the end of November with no complications. Her MRI and chest X-ray (also from November) both came back clear.
We have the results back from her December blood work. Her AFP is up a little (16 in Nov. 20 in Dec. ). Doc said a slight rise and fall is ok.
It was nice to be home for Christmas and New Year! We were in the hospital for 30 days this time last year our families brought Christmas to us. Our Christmas this year was a simple one surrounded by family and good friends.
Hope 2013 brings you all health and happiness! Thanks again for all the positive vibes and prayers,
Lyla's family
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| nick1572 |
| Posted: Thu Mar 14, 2013 10:16 am |
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ORDER OF THE SKULL
Joined: 19 May 2011
Posts: 1229
Location: Lexington, SC
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| Late on this...but wishing you and your family and Lyla a healthy year!! |
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| chase6 |
| Posted: Thu Apr 11, 2013 12:31 pm |
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ORDER OF THE SKULL
Joined: 20 Feb 2010
Posts: 211
Location: San Diego
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Hi all,
Our little Lyla is doing so awesome! She has been hitting all her goals and her test results look great! So much so that her Doctor has backed off her testing to the next level. We will start coming in for blood draws quarterly instead of monthly and MRI / CT / X Rays will be every 6 months rather than every 3 months.
Lyla will be celebrating her 2nd birthday on the 19th of this month. She has been officially in remission for over a year and we are so grateful. It does not appear that the whole ordeal has slowed her down one bit. She is on target on her developmental and growth charts.
Thank you all for your positive vibes, prayers and donations. My family and I are truly grateful.
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| blaze |
| Posted: Thu Apr 11, 2013 12:35 pm |
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ORDER OF THE SKULL
Joined: 01 Mar 2008
Posts: 2531
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| Awesome news!! |
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| Flex your head |
| Posted: Fri Apr 19, 2013 6:44 pm |
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ORDER OF THE SKULL
Joined: 27 May 2011
Posts: 1057
Location: West Oz
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Happy birthday Lyla!
Great to see you doing so well.
Mark and Family. |
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| hotrod |
| Posted: Wed May 08, 2013 3:25 pm |
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ORDER OF THE SKULL
Joined: 01 Feb 2006
Posts: 8515
Location: The Grid
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chase6 wrote: Hi all,
Our little Lyla is doing so awesome! She has been hitting all her goals and her test results look great! So much so that her Doctor has backed off her testing to the next level. We will start coming in for blood draws quarterly instead of monthly and MRI / CT / X Rays will be every 6 months rather than every 3 months.
Lyla will be celebrating her 2nd birthday on the 19th of this month. She has been officially in remission for over a year and we are so grateful. It does not appear that the whole ordeal has slowed her down one bit. She is on target on her developmental and growth charts.
Thank you all for your positive vibes, prayers and donations. My family and I are truly grateful.
Reading this has really put a smile on my face.
Happy Belated birthday Lyla and all the best to you and the rest of the family Chase6. |
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....but I can skate for Bacon wrapped hotdogs with pulled pork and Glass bottled Dr Pepper! |
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| Dai-mond |
| Posted: Wed May 15, 2013 3:32 am |
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ORDER OF THE SKULL
Joined: 06 Aug 2002
Posts: 325
Location: London UK / Wellington NZ
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what an incredible story.
its not often i get the chance to read lots on the site with work and a growing family but tonight i have and ive just seen this thread.
With two daughters of my own and the youngest the same age as Lyla i know what its like to be a dad. But i have no idea what it must have been like for you and your family over the last 18 months or so.
Im so happy to hear that she is doing so well. I send love and cool vibes across the seas not only to one very strong little girl with fight way beyond her years but also to one AMAZING dad (And Mum of course) who must have been through hell and back and so far are coming out the other side smiling.
Huge respect to you.
Love and best wishes of continual health to you all.
Dave, Jo, Jaya(4) and Lani (nearly 2) Wellington. New Zealand |
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| chase6 |
| Posted: Thu Aug 15, 2013 3:27 pm |
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ORDER OF THE SKULL
Joined: 20 Feb 2010
Posts: 211
Location: San Diego
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Hi all,
It's been to too long. We are extremely grateful to have so many of you sending possitive thoughts to our little Lyla from around the world. Here's a quick copy of an update from the wife's FB page:
From Aug. 2nd:
"Lovely Lyla on the second floor HemOnc park at her routinine appt. today at Radys. Wearing her mask like a good girl protecting her fellow HemOncies from a bit of a cold she has right now. Today's appt. included a physical, urine analysis and chest x-ray. Her physical and x-ray she passed with flying colors but her urine analysis showed up as having a bit of blood. Dr. says it's very minimal and they will retest her in a couple weeks when we come back for her MRI and blood draw. Lyla is doing great and thriving in every way! We are staying positive and know that her urine analysis result in a couple weeks will come back clean. Today's appointment went really well. She is so brave! Smiling the whole time when they put that big ol X-ray machine over her oh so wittle body. We are so lucky she chose us to be her parents:-) Love xoxoxo"
It's so cool that Lyla used to have to wear that mask to keep her own immune system protected. And now she wears it to protect others.
Lyla's MRI appointment was yesterday and it went really well. We have the gas mask at home that they use to sedate her for the MRI. We practice with it so that she won't be so afraid when they place it over her face. She's cried the last few times and its really sad. But not this time! Her mother was allowed to stay with her while the Anesthesiologist did his thing. And Lyla was smiling and breathing deeply into the mask just like we practiced at home. The whole process with the mask takes all of ten seconds but what a difference it makes.
We should have some results from yesterday's visit next week.
Thanks again for checking in and all your possitive vibes,
Lyla's Dad and family |
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| Indy2992 |
| Posted: Tue Aug 20, 2013 2:27 pm |
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ORDER OF THE SKULL
Joined: 22 Apr 2004
Posts: 1701
Location: That empty pool off La Tuna Canyon
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| Awesome! |
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| brokenorderband |
| Posted: Tue Aug 20, 2013 2:38 pm |
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ORDER OF THE SKULL
Joined: 29 Oct 2009
Posts: 6560
Location: West of Mordor
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| nice to hear good news...thanks for the update! |
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