Just an update on some of the families that I read about every day.
Unfortunately, there's just not a lot of good news going around. If you remember the Loneliest Road campaign, of those 7 fathers, three of their children have received the worst possible news. Please keep these families in your hopes and prayers, that these children may be in the least amount of pain, and that they maintain stable disease as long as possible.
Grace relapsed awhile ago, but recently her prognosis became extremely poor. Her abdomen was described by her doctor as "a mess" and she has been sent home to hospice. Her parents wrote on her website, "If Grace is to die of cancer, we want her at our home, in our bed." This breaks my heart, this little girl is beautiful and has fought so hard. Her website is here: www.savegrace.com
Marissa was NED, and on antibodies (3f8), however, she HAMA'd recently, and unfortunately, a few days later, her family learned that she had relapsed. With this relapse comes a new chemo regimen. This little girl has a lot of fight left in her, please keep her in your hearts. It seems that when relapse happens, the families hope and pray for an answer that will "buy time" until something new comes around that may save the life of their child. Marissa's website is here: Marissa
This little boy is from England... he received his chemo and transplants in England, and then his family raised $350,000 to come to NY so that he could treat at MSKCC and receive the 3f8 antibodies. While he was here, he relapsed. He just flew home to England, as he has run out of options. In the words of Jack himself, "I just want to be at home." Jack's website: www.jackbrownappeal.org
The other Loneliest Road children are all undergoing treatment, and dealing with their own scans, tests, and chemo. All of them can be found at the Loneliest Road website.
One other bit of news - beautiful Lucas Tran gained his wings a few days ago. His father was a founding member of Band of Parents, a new group of parents who are willing to go to almost any measure to get their children the care that they need, that the government refuses to provide.
Lucas and his mommy. Visit his website here.
Finally, as always, please PLEASE keep Katie Krize in your hearts. I feel a really special connection with her, even though I have never met her. She is the very first child that I knew other than Liam who has NB. She was in a state of relapse while Liam was treated and passed away, and sadly she relapsed over a year ago.. I was devastated. Once again, Katie is at odds with this monster, but she fights each day and Em and I keep up on her very regularly. (She also sent me mail while I was at H**ver.. so that instantly made her one of my favorite people!!)
Please visit her website, and leave her some LOVE!
Please keep all of these families in your thoughts, and remember that there are always struggles going on all around you, even ones you may not be aware of.