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
HOW TO REGISTER AS A PART OF A GROUP To receive the $4 discount for registering as a group of 4 or more participants age 13 or older, one person must be designated as the "Group Leader." That person should register first and list the "GROUP NAME" and "GROUP LEADER" when prompted.
Both the GROUP NAME and GROUP LEADER must be given to all members of the group so they can complete their registration by providing that information when prompted.
Today marks six months since Hadley's death. I have tried and tried to put my heart and experiences into words. There just aren't any yet. My heart aches for my girl. My whole body aches for her.
We are trying to pick our lives back up. We will never move on but, we do have to keep moving. I have applied for a part time job on the Coast Guard base and should hear by Monday if I got it or not. Brandon's work schedule is crazy. When I say crazy I mean crazy even for a Coastie/MIlitary man. It's been nuts. The boys completed the school year. They are officially in Kindergarten and 2nd grade. Liam is very excited for Kindergarten and all the challenges ahead. I think he, too, will be a Kindergarten reader. He is so jealous that Keegan is a totally independent reader now. He tries and tries. Poor boy. His handwriting is coming along quite a bit more naturally than Keegan's did. He loves to write words and people's names. Like I said, Keegan is an amazing reader. Not only are his reading skills fairly impressive but, he actually absorbs everything he reads. He can read a non fiction book on just about any subject/person once and 2 days later recite all kinds of facts and trivia. He's such a little sponge. He definitely gets this from his father. The boys are attending a summer camp for children with and siblings/bereaved siblings of children with cancer. They are so excited! I know they will have a blast and not have any time to miss mom and dad but, this mama is a nervous nelly. They will be swimming and going on various outings during the week they are there and my head just starts getting all kinds of paranoid. If you can even be paranoid once you've survived the loss of a child.
Thank you for checking in. I know it's been quite some time since I updated last. Like I said. There really just aren't any words to describe our broken hearts...and if there were you certainly wouldn't want to hear them over and over again. =)
Here is a poem another Brain Tumor Angel mom shared.
I know your names
You were here for hours, days, months or years Too young to die Too young to leave your parents, who will never be the same Your names are written on their lives forever They will remember your birthdays, with "if only" and "would have been" They will count the years and measure you by your friends They will mourn your graduations, ball games and marriages They will hold you in their dreams They will cradle your teddies and sleep with your blankets They yearn for the scent of you, long gone from your clothes They will walk into your darkened rooms and hope that tonight you will be there They fear they may forget your faces, your smiles, your voices They hold onto the grief that binds their love to you They will remember the insidious unknowns that stole your breath, stopped your beating hearts They will relive your last days, last touches, and last breaths And rewind them again and again until they are tight in their mind’s eyes I weep for your mothers, your fathers, your grandparents, your siblings, your friends And all those who will never know you And when time silences the voice of solace I will say your names and remember
Author Unknown
With Faith, Hope and Love, Angela and the Fox Crew
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