Taking each day for what it is…

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.

Taking each day for what it is…

“The majority of my days are spent in the bed with Isabella.  I try to lay with her in the morning until around 4 each day.  We don’t do much in the bed.  Occasional meds, back rubs, small conversation.  I’ll get her up and put her in the bath with me to make sure she at least feels clean every day.  But with each bath, I look at this girl and can barely see my Isabella in there.  Her stomach is sunken, ribs showing every bone.  Her shoulder stick out like they want to punch through the skin and her spine shows each vertebrae.  I can no longer carry her with my hand on her back because it just upsets me too much.  Her pain comes and goes and when it comes, it seems harder to get on top of.  We have increased her pain patch and the nurses are coming out tomorrow to show me how to push meds through her line.  I think it’s my last step in becoming a full nurse for her.  It’s what I want though.  I feel like I want zero help from the medical profession going forward.  It just is too personal to me at this point so I’m starting to even close them out.  I know I am driving them crazy but they deal with me the best they can.  I know they mean well.. but it’s just hard.  We have days where the pain is so intense that she starts vomiting over and over.  We wonder if things will start to turn for the worse, then the next day is quiet and she sleeps all day.  One night this week she started to become disoriented and had trouble speaking.. but then cuddled up and slept through the night.  It’s hard because we come to peace with things and what is going to happen, and then she walks downstairs and eats a bowl of ravioli.  But just as quickly as she appears, she disappears yet again.  Her counts are sky high so we aren’t needing transfusions.. which is odd because we were told to expect transfusions because the neuroblastoma and radiation will start to knock them down considerably..  But that is not happening.  We think she will only make it a couple of days and then a week goes by.  A horrible night followed by a day up and chatting with me about how my birthday gifts for daddy are “not fun” and she wants to get him something fun so we search the Internet together. Really???  I honestly don’t know what in the hell we are doing.  Stuart is trying to stay busy with work or the house, Grant is in camp, Mom is entertaining Phia, Stuart’s Dad is helping him with whatever is bothering Stuart and Katherine is organizing my pantry.  It’s honestly a very weird house right now.  But, we are just taking each day for what it is.. another day with Isabella.

While we are all trying to come to peace with things, Grant is beginning to struggle.  He is having moments of tears that come from just seeing a picture of them together.  Nightmares, night sweats and the constant need to be right next to me, let me know that he is grieving.  He misses her.  He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”.  Even today he came in and sat next to the tub while Isabella and I took a bath.  Just talking about whatever came in his head.. but it just felt normal to him for a minute.  They talk as if nothing is going on.. he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book.. whatever.  He just wants to be there.  I’m amazed he doesn’t mention the look of the body he sees in the water.. he notices it I’m sure.  I know the key will be keeping him active when this process comes to an end.  I’m looking forward to giving him the attention he deserves and getting to connect with him again.  Right now the kids get me in doses of when I’m downstairs for a bit.  They light up when they see me like it’s been weeks since I was there.   I sit on the couch with Grant and Sophia and they both take my arms and wrap them around their bodies.  It feels wonderful.”  – Isabella’s Mommy, June 21, 2012

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.