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!
SAVE THE DATE! Hadley's Royal Birthday Ball Saturday, September 27th 2008. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Journal
Tuesday, August 26, 2008 7pm
We made an unexpected trip to our family doctor today. Thank goodness for last minute appointments! Hadley woke up with a swollen bottom eye 'lid' yesterday and complained of pain all day. She rubs it pretty regularly because of her vision and ocular muscle issues so I thought she'd just irritated it and it'd go away. Well, today she woke up and it was even worse and she was even more insistent that it hurt. So, I decided to call the doctor's office instead of waiting for the hospice nurse on Thursday. Her appointment revealed that she has some kind of a weird infection in her right bottom eye lid and her right ear. ??? Her left ear and eye are fine. Mysterious? Yes. So, the doctor was a little baffled...and put her on 10 days of a sulfa antibiotic. There was some mumbling about MRSA infections...but, from what I gather it was just her thinking out loud about which antibiotic to choose. Oy. This girl...it's always something.
When we stopped at the pharmacy to pick up her antibiotic I actually remembered to ask the pharmacist for a supplement recommendation to try and prevent the accompanying yeast infection (which Hadley is prone to for some reason and antibiotics just make it even worse). I usually forget about it until she is miserable and I feel like a terrible parent. Anyhow, for those of you who don't like yogurt or want to be extra certain to get enough of the probiotics to try and prevent yeast infections there is an Acidophilus supplement! Hopefully it works so my sweet girl doesn't have to be any more uncomfortable than she already is. Urgh.
So that is today's news.
Tomorrow afternoon we have testing for the boys at their school. Thursday we have a couple hours with the hospice service for intake in the morning. Then in the evening we have parent info night at the boy's school. Friday afternoon we have a special VIP night at the zoo through Doernbechers. =) *YAY* We even get to get into the Dinosaur exhibit for free. The boys are going to flip their nuggets!!! =) Saturday we may be going to the beach with some friends. Brandon has duty so it depends on how Hadley is doing etc. I'm not sure wether I want to try it on 'my own' with all three kids or not. The beach would be super fun though. =)
The boys start school a week from tomorrow! Where did the summer go? Seriously.
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