For those of you who have been following us since day one, you may remember that I posted about the first family we met with whom we related to. They have a boy that is Jack's age, Julian, and a girl who was a little younger than Lucy, whose name is Mirabelle. Julian had a form of brain cancer that snuck up on them pretty much the same way cancer sneaks up on a lot of the kids we meet at St. Jude. Yesterday, in the arms of his parents, Julian passed away. His fight was a hard one all the way to the end, and as most children with cancer, his strength amazed all around him. I'm numb, sad, and can't stop crying this morning. This part about living at RMH and in the St. Jude environment is the worst. I can no longer count on one hand how many children we have met who have died. That is horrible. Before Lucy got cancer, we were oblivious to this world, and not on purpose, but because I guess I didn't think it existed, or at least I didn't want to know it existed. But it does. It is very real, very sad, and never gets easier with each passing, even though these aren't my children, but they could be. I am thankful everyday for St. Jude and the research it does to ensure that more and more children can be cured from different forms of cancer. Heck, if we were living 30 years ago, the chance of Lucy surviving from ALL was slim to none, and now its a 94% cure rate. But the brain cancers are the worst, specifically the brain stem types. And I hope that people remember St. Jude when they have a choice of where to send their money for donations. As one mother, what if it were child? Wouldn't you want the best in medical care? wouldn't you want the research to be top notch so another Julian doesn't go through what he did in the last 9 months of his life?
Zach and I are contemplating making it to Julian's funeral. It broke my heart when I read his mother's post that she will let everybody know of "arrangements" as soon as she can. Arrangements, what a funny word. What an inappropriate word for any parent to have to say for their child. We really want to go and show our support, and yet we do not plan on telling Lucy or Jack. We do not want her to know or Jack of the children that die from cancer. Some may not agree with us, but for us, it is the right choice for our family. We want nothing but positive energy and thoughts coming from Lucy and for her continue her life as a 3 year old, and Jack is a worrier. He worries about whether or not he picked out the right toy at a store when he gets to go shopping. If we tried to explain the death of a child, he would only worry that he or Lucy were going to die. And he would obsess over it. And right now, we don't need that type of energy in this house, Zach and I worry enough for the 4 of us.
I am still in disbelief that this family lived with their child for 5 years and had to let him go yesterday. I cannot imagine my life without either of my children. And I cannot imagine what his little sister thinks or feels or understands. they were like Jack and Lucy, and close. Jack and Lucy may fight a lot, but they are each other's world. And I have no words to offer Julian's mother, as there are no words. To say he's not suffering and in a better place is a lie. The best place for a child is with their parents, period. And I know people won't agree with that statement, but that is just how I feel. So in our new world, children die every day, and its something we can never get used to, and its something we wish would go away.
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