June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Where she found the strength, I’ll never know…

Isabella and Daddy

“Unfortunately, Isabella is no longer getting out of bed.  As a matter of fact, she is barely moving.. or barely awake.  I know that CB could never give you a crisp enough picture of what is exactly going on here and I should do better at that.  So many of you have followed her in this journey for so long and I know you are wanting to know how she is doing.  Our nurse visit today told us that we are just a couple days away from her passing.  Her heartbeat is slowing down but sounding different because her heart is working harder.  Her oxygen is slowing down a bit too.  Her breathing is slowing down so much in fact that I just stare at her.  She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again.  She sleeps most of the day and gives me small glimpses until what is in her mind.  I lay with her so quiet and still and listen to the things that she says in her sleep.  She asks me if I see things or tells someone to wait on Mommy.  She will say Grant’s name but then it wakes her and she says that she was just dreaming.  She flinches and smiles, makes gestures with her hands and squeezes my hand softly.  It’s like she is talking to someone.  But the occasional smile let’s me know that it is not conversation that scares her or makes her sad.  Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up.  We have been told by hospice that we are lucky.  She is relaxed, comfortable and not in pain.  So many children pass in pain or discomfort or even worse.. scared.  She seems to be at some peace.  Grant misses her already.  He comes in bed and wants to crawl in next to her.  The other day he just snuggled beside her and scratched her back while they (he) watched a movie.  She didn’t moan or cry out for him to leave.  She just laid there with him quietly.. as if to give him a moment.  Sophia walks around dressed in princess outfits and opens the door occasionally to say, “Bella!” but then is quickly shooed out so Ib isn’t disturbed.  Behind the scenes we are making arrangements so that we are as prepared as we can be.  We are once again overwhelmed by the things showing up at our door.  Fruit, flowers, meals, cards, items for the kids.. amazing stuff really.  I’m picturing the mounds of thank you cards that I want to write when this is all done but I’m also scared to write them because it will mean she is no longer with us.  It is becoming a beautiful thing that I’m watching honestly.  You think you love your kids, but this is like no love I ever knew.  I feel so privileged to be hand in hand with her during this last time in her life.  She is finally allowing other people to have quiet moments with her as well.  It’s as if she is giving them some last gift to say thank you to them as well.  Even my Mom who she adores was moaned and groaned at for some time.. but she is curled up in bed with her now receiving her gift from Isabella for all she gave up in her life.  I’m so thankful that everyone who is important, gets to be a part of this in the end.