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
Sunday, July 20, 2008 2pm
We're back from camping. What a great time. =) We haven't been in over 4 years. I had totally forgotten how nice it is to have no phone, no laundry going, no tv...just a campfire and the woods for the kids to discover. I love it. =)
I am asking for prayers for our girl though. She's ok right now but, she did spend more time sleeping this weekend than any kid should. She asked to nap several times and each time she went right to sleep. Then, this morning she threw up for the first time in a while. She hadn't eaten any breakfast or anything yet. We had just gotten up and were still getting things ready and she warned us that she had to throw up. She did. When I asked her if she had owies she said yes, in her belly. I asked her if she had owies in her head she said "no, I feel better now." So I asked her if she had owies in her head before she threw up she said yes, big owies. This can be a textbook symptom of hydrocephalus. Of course it can be other things...but, you all know where my mind goes. She had several clusters of complex partial seizures this morning as well. It was just a tough morning for her..but she is just such a trooper. Very little to NO complaining. She just rides it out and then goes on about her day. She's much tougher than anyone else I know. =)
Please pray that she has more great days...and that these rough days are just a 'fluke'.
We got a letter from Make A Wish dated 7/16/08 saying that Hadley had been referred and that they were starting the process of validating her eligibility. They gave me the 3-4 week time frame again. So, I'm guessing we shouldn't hear back from them until the 3rd week of August. THEN we can actually start the wish granting process. I am quite sure that this will be an amazing experience for Hadley and our family...but, I am human, and a scared mama...and this feels like it's really taking a long time. I contacted them 3 weeks ago and was expecting to be hearing from them in the next 7 days or so that Hadley is eligible and get started on her wish. Now, I feel like we're starting all over again. *sigh* Like I said...thankful isn't a big enough word for the experience I'm sure we'll have because of MAW...but, I am starting feel a sense of urgency in getting Hadley's wish granted while she's still feeling well. I hope that doesn't sound too ungrateful. =(
Alrighty...I still have more photos to get uploaded here. I'll try and work on it this week. Hopefully I can get caught up. =) Have a great week everyone.
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