Hadley, enjoying her 'Magic Days" in great style. =) 7/6/08
For I am conscious of my thoughts about you, says the Lord, thoughts of peace and not of evil, to give you HOPE at the end. Jeremiah 29:11
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Hadley's Diagnosis:
Frontal Lobe Brain Damage
Hemiplegia
Diffuse Bilateral Thalamic Glioma (Brain Tumor).
Hadley's Treatment to date:
2 12-hour brain tumor resections, 4-27-04 and 10-13-04
4 Broviac placements
1 Medi-Port placement
3 units of donated blood...THANK YOU!!!
Countless MRI's
Countless hours of physical and occupational therapy
4+ months of chemotherapy (TPCV trial for low grade gliomas - failed to stabilize tumor)
Carboplatin and Vincristine chemotherapy from 11-5-04 to 3-1-05 (ANOTHER chemo failure)
'Chronic Low Dose' Schedule Temodar failed after 2-3 cycles...but, is still slowing growth slightly.
One Cycle of Chronic Low Dose Temodar (higher dose over a longer period of time than the standard dosing schedule)Temodar and added Thalidomide.(FAILED)
Currently on a Phase 1 clinical trial (PBTC 018). The chemotherapy is named Lenalidomide (the new generation/more 'powerful' Thalidomide). Thalidomide is an oral drug...taken in capsules that at THIS point cannot be opened and compounded.
***Hadley has COMPLETED the Leanlidomide trial and has remained stable since completion (3/16/07)
~Relapsed 2/08...new tumors found.~
06/08~ Hadley's family and Medical team made the heart breaking decision to end treatment and live life 'the Hadley way'.
Worrying about your children is SANITY, and sometimes being that sane can make you CRAZY. - From Spanglish
I'll still post stories and stuff here, but, it's a lot easier to keep track of everything and post pictures there. =)
Hadley's Magic Days Spending!
$50~Lelli Kelly Shoes on eBay.
Thank you to Amy for setting up a Tupperware Fundraiser for Hadley. 40% of sales will go directly to Hadley's Magic Days Savings Account! Click on the picture or go to: www.Fundraising4Fun.com/AmyNeff and click on Hadley's Magic Days. =) Thank You!!!
SAVE THE DATE! Hadley's Royal Birthday Ball Saturday, September 27th 2008. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Journal
Wednesday, August 6, 2008 8:15 am
***Finally posted Thursday at 10am***
Hi all,
Just a quick note this morning because our internet is pretty spotty for a few more days. Our things were delivered on Monday morning! =) Brandon had to work all day yesterday but, I've been working really hard to get things unpacked so we can get settled in. The kids are all really excited to see their things again. Hadley just about hugged the mover when he carried in baby Lola's crib. She screamed and got very excited and then said "Yay, Baby Lola's crib. Now she doesn't have to sleep in her invisible crib anymore! Yay!" =) She's so funny. That's the first I'd heard of an invisible crib. The boys were very excited to see their bikes and all their toys.
We haven't heard from the doctor's office about the referral back to Doernbechers or from Make-A-Wish yet. I'll let you know when we do. There shouldn't be any problems with either referral, it just takes time.
Thanks for checking in and continuing to pray for our girl. Don't forget to email me with your address if you'd like an invite to the Royal Ball! FoxiFamily@yahoo.com
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