CaringBridge Entries | May 31-July 5, 2012

Dreading for 5 years…

Journal Entry by Erin Santos — May 31, 2012

Well, here it is—the journal entry I have been dreading for almost 5 years. The day has come when Isabella’s cancer is finally winning. The scans on Wednesday told us that Isabella’s spine, from her tailbone to her neck, is covered with disease and tumors. All of this was on top of the disease that she already was fighting in her bone marrow and bones. We asked all the right questions and uncovered every stone. We were hoping that the new tumor would be able to provide us with a tumor sample that we could send to CHOP to see if she was eligible for a promising new treatment. But the amount of disease she has and the locations make us ineligible.

We knew the news was not going to be good, but we thought a good night’s sleep would help. But when Stuart came to bed around midnight, he woke me as I was wrapped around Isabella to tell me that the oncologist had sent him an email. Discussions between Charlotte and CHOP came to an agreement that our journey will be ending. They suggested possible radiation to relieve her immediate pain and then Hospice for the remainder of her journey. Stuart and I had the hardest discussion of our life at our kitchen table and finally woke my Mom around 1:30 in the morning to tell her that our fight was ending. We have been sobbing the last 24 hours, and it’s hard to pull ourselves out of the grief we are feeling. She has been fighting hard for so long that it goes against everything we are to stop.. but it is time. Her body is tired and weak, and we are up against a battle we cannot win. We have decided to do intense radiation to her entire spine over the next three days to relieve her discomfort. We are planning a family trip to Disney World that will take place this Monday, given no emergencies in the next 4 days. Our immediate family started arriving today to see her, and close friends and family will continue to drop in over the weekend to see her as well. We are hoping that she is well enough to go to Orlando because it is the happiest place on earth for her.

When we went for our Make-a-Wish trip several years ago, we stayed at the Grand Floridian Resort with a room that overlooked Cinderella’s castle so we could see it at night, all lit up with the fireworks shooting above them. Tomorrow, I will be on the phone, trying to line up the same trip in the hopes that we can give her one last gift before she passes away. Grant and Sophia will be joining us, so my Mom and Bob will come too so we can devote time to making things special for her. Stuart’s Dad and Katherine might also join for some added hands. When we return, we will line up our Hospice and settle in for an awful ride. I know it sounds terrible, but I wish that God would let her just pass away in her sleep the night we return from Disney. All I want is for her death to be peaceful and without struggle or fear.

The oncologist today went over a couple of ways that she could pass away, and every single one breaks my heart. She deserves more than this, and I’m beyond pissed that the end will look like this for her. We have not yet told her what is going on; it will wait until after the trip. Until then, we all take our moments snuggling up to her and then excusing ourselves for our breakdowns. We ask during this time that only people who are in our “inner circle” come to the house. These last 24 hours have been so difficult, and we need to do what is best for Isabella now. We know that everyone just wants to help. But I can’t do a flooded email box with questions.

So please forward anything pressing to Charlotte Shackleford at cjshackleford@gmail.com, and she can funnel things to me as needed. We are losing more and more of our Isabella every day, and I just want to spend my time seeing every last minute of her that I can. Thank you to everyone who has been a part of our journey and helping to find her a cure…I just wish it could have come sooner.

In a daze…

Journal Entry by Erin Santos — June 3, 2012

The days seem to be flying by, but in some ways, they are the longest days of my life. Each day, we watch as Isabella sleeps and withdraws herself a little bit more. She doesn’t want to be around people much and retreats to my bed every chance she gets. She still has small minutes of herself each day when she will perk up and ask for milk, corn casserole or ravioli. We mainly just lay quietly with her. Our immediate family came in this weekend and while I know the noise was bothersome to Ib, people needed to be able to say their goodbyes. It was a good distraction for Grant and Sophia as they just play like normal. People who are very close with Isabella are able to crawl in bed with her for a moment with her, and it’s become hard for me to watch how many people she has a deep connection with. I’m trying to hold it together the best I can but I’m weak, sick, shaky and tired. I feel waves of panic attacks coming over me that are only made worse by my diet and sleep patterns. Even today, just going through Grant’s drawers to pack a bag gave me such a hit of panic that I had to stop and lay on the floor to compose myself. Of course, Grant walks in while I’m on the floor and says, “Hey, Mom…” and walks back out. Everyone has been wonderful…so I hear. My besties have set up camp across the street and funneled everything through so that we have our private time. They have organized an unbelievable trip for us to take Isabella to Disney World, which they are walking us through any minute. I’m not aware of who gave what or really what we are doing. I think they are shielding me from feeling the need to say thank you to people. They are keeping a list for me, and when the time comes, I will be able to walk through it. There are friends and your life, and then there is what I have. How I am so lucky, I will never know. We are doing horrible things like talking to hospice about funeral homes, what to do if she dies in Disney, how to talk to our kids.. But I’m also getting moments last night where Isabella and I took a bath together, and I washed her up and talked about all kinds of things like what animal we would like to be.. she of course, would be a bunny. I got her out and dried her hair, and we cuddled on the couch. Hospice suggested a book called Dragonflies and Waterbugs to help talk about death to children. It’s a great book about this family of waterbugs who will occasionally crawl up a stem and not come back… even though they seemed very happy in their waterbug family. They made a pact that the next person that goes will promise to come back and tell what is up there. But when the next bug goes up the stem, she turns into a beautiful dragonfly. She loves to fly around and can see the waterbugs below. But when she tries to return, she can’t get through the water. Instead, she will have to wait until someone else in her waterbug family decides to join her as a dragonfly so they can fly around together. I’ve only read Ib and Grant the book, but will use it as an example when the time comes. So today, we leave for our last family trip at 5. I can hear Charlotte in the kitchen walking Stuart through the details. Even if Ib can’t leave the room, we can see the castle and the fireworks from the window so we can experience as much as we can. I have been blown away with the people who surround us now. The cream of the crop has floated to the top and wrapped us in their love. I know that we are being taken care of, and although I’m in a daze, little eye contact from people lets me know that I’ll be okay because they will be with me every step of the way. Now, I just hope that this trip will provide Isabella with the most magical gift we can provide while she is still with us. The next gift we can give her will be all too soon.. to never be sick again and run through a bed of flowers as fast as she can with kitties and bunnies running alongside her.

Disney

Journal Entry by Erin Santos — June 5, 2012

I’m sitting in a totally black room with Isabella. Although her enjoyment of disney has come to a screeching halt, I’m positive that this room is providing her comfort. No light, no doorbell ringing, no dog barking, no noises below. The only sounds we hear are the occasional train whistle from the magic kingdom or the toot of the boats outside. Very calming for her I would think. I wasn’t sure we were going to make it here honestly. We had an episode on the plane that made me think she was going to die right in my arms in the air. I have never been so frightened and the faces on the family members around me made me know it was heartbreaking to watch as well. We finally did arrive and to say the red carpet was rolled out is an understatement. Our rooms overlook the castle and Isabella and I watched the fireworks together that night. Yesterday morning we had a private breakfast with every character imaginable. I’m sure it was overwhelming for her but she tried her hardest to see all that she could. Her breathing was fast and she was weak but she made sure to get her autograph book out for them to sign. We were given a private tour guide to take us to the magic kingdom. Isabella loved the small world boat ride so we went to get on the boat. As we went around the ride, she told me that she was not able to see. She kept covering one eye so that she could focus but it became just too hard for her. I had the guide take us back to the room and we snuggled into our dark hole together. She wakes briefly to ask where others are, but then curls back into her Miss Chrissy blankets and pillows. This morning I got her into a warm tub and shutter at the body I see before me. It is a shell of my daughter. A sunken belly, shoulder bones, spine and hip bones protrude out so far it punches me in the gut. I wash her gently as she leans against me for strength. I carried her around the grounds a couple of moments ago, just to feel the sun and wind on her face. She thinks it is beautiful and covers one eye to look out at the castle. But her vision makes her sick so in she goes, nestled back into her dark, soft bed. My friend Angelo told me that death can be a beautiful thing if you can really see it for what it is. While I’m stricken with sadness, I see what he means now. The outpouring of support and love is like nothing I have ever seen in my life. The years I spent wondering where I fit in Isabella’s life, are finally producing answers to me. I am at a constant struggle with being her mother. I am the one who has to give her shots, tell her she can’t play with friends because she has no immune system, take her to the doctor, give her medicines, all the things she hates. I have to be her mother and keep her alive. For years I felt like she was running from me because I wasn’t the “fun” one. I’m the one who says no. But as I see her approaching death, I am who she wants beside her. I am quiet and calming to her. When she feels me beside her, she crawls into me and feels safe. It’s as if it is her last “thank you” to me for all that I have provided. Maybe she knows it’s what I need to move on after her death. To know in the end that I was her mother in all senses of the word. It was her and I in the beginning and it is her and I in the end. Now if I can compose myself for a moment, I will tell you all the wonderful things about these past couple of days. Stuart. Stuart is a rock. He can drive me crazy in life sometimes but he is 110% of what I need right now. We tag team this phase with ease and lean on each other constantly. He is amazing with Isabella and I know he is breaking inside. But yesterday I watched him with Sophia at the pool and knew that he too would be okay. He is taking Grant now to Hollywood Studios for a dream day of Star Wars. He is an amazing father and we are all so lucky to have him. Grant. Grant tells Ib he loves her before he goes out, he hugs me all the time, he takes care of Sophia. He and I watched the fireworks in Magic Kingdom last night and it was magical as he leaned on my shoulder and gave me nose kisses. Sophia. Seriously, she is a gift from God. She is by far having the best time of anyone. “Phia’s castle! Phia’s Mickey!”. She loves it all. Doesn’t know a stranger.. Hugging every character and blowing kisses. She struts in this morning in a two piece bathing suit, sunglasses and hat and gives me a model pose. I could eat her up. My mom and Bob.. Taking whoever, wherever. Keeping my kids in their room and tending to their every needs. Don and Katherine, working behind the scenes with our concierge, lining up whatever we need, being Stuart’s rock. We are all a well oiled machine, knowing that when we leave tomorrow, the real work begins. I imagine we are days away from saying goodbye and I’m confident we will all face it together as best we can. Thank you to everyone who has sent flowers, paid for rooms, flew us here, drove us and even sent gift cards. We haven’t had to think of anything these past couple of days besides our family and it has been a blessing. My besties have organized a trip of a lifetime and it will live in our hearts forever with the help of you all who follow our journey. Now…back to my sweet girl.

Cruel Games and Taylor Swift

Journal Entry by Erin Santos — June 7, 2012

We arrived safely from Disney and settled into a beautiful, quiet, clean house with a stocked fridge. It is really how you should come home from any vacation. The roller coaster that is Isabella continues to play cruel games with us. She goes through these moments of a dark hole, to a sit up in the bed with full conversation and food requests. There have been no pain complaints in the last 48 hours that have required breakthrough pain medication. She even wanted to sleep in her own bed last night. We considered the break for a moment but then Stuart ended up sleeping on the floor next to her bed just in case. This morning she slowly walked downstairs which shocked us all. She seemed to do well this morning but when hospice came to put her line in, she spiraled out of control. Shaking, anxiety, nerves.. I just couldn’t settle her. There was a small discussion that needed to be had without her in the room and she just wouldn’t let go of me. She was grasping onto me with all of her strength and would not let me go. I read into everything these days… maybe she knew what I was going to hear and didn’t want me to hear it? As heartbreaking as it was I had to peel her off of me to discuss her private matter on the porch. As she watched me through the window I told the nurse.. “She seems really good! I feel like I’m second guessing things here.. Maybe she might pull through this?”. I know that the nurse wanted to agree with me, but we were warned of this rally that she would get near the end and that we should not be fooled by this last cruel game that her cancer will play on us. I was told that most of them rally before they finally commit to the process of dying. The fact that she now closes one eye to see, indicates that the cancer has spread to her brain. She has not yet lost some of her abilities to walk, use the bathroom, etc.. but they will soon be taken from her. I think Stuart and I have just lived for so long being an advocate for her and getting her to pull through when doctors throw in the towel, that it just seems to go against everything we are to accept this. Afternoon visits from friends and a last minute request to go as a family to a Japanese Steakhouse filled the rest of our day. But as I laid her in my bed tonight, I knew that hospice was right. She is trying for the last time to live.. but her body will soon lose the fight. I feel like I’m coming to peace a bit with the fact that we are going to lose her soon. The community of people supporting us doubles daily and her reach is growing nationwide. It seems fitting for her as Isabella always thought that she was a celebrity her whole life, but just wasn’t sure why. That point was made very clear today when my phone rang with a blocked number.. Taylor Swift was on the other side of my phone and she had heard of Isabella and her fight. Isabella is a huge fan of hers and a month ago, she would have screamed bloody murder to hear her on the other side of the phone. But, this disease is taking all of the things about Isabella that made her so wonderful. It was all she could handle to just lay on the couch and listen to this woman she loves speak to her through the phone. She could barely speak, she just looked at the phone with one eye closed as if she was trying to see Taylor in the phone somehow. If you could have seen Isabella at her concert a couple of months ago, it would take your breath away to see her now. How just a couple of months and a horrible disease can steal more and more things from her every day. Makes me so sad to see it. Even the revolving door of loved ones who leave and I know they are thinking it is the last time they will ever see her. This is my day…my heartbreak, Isabella’s heartbreak, and heartbreak from everyone we come in contact with. I can only think that through her life, so many are changed that it will make the difference.. maybe even save another child’s life. Isn’t that what we all want? Our life’s sacrifice. knowing it can save someone else’s? That is an amazing gift. One death for the sake of millions? I know that is what Isabella would want in the end. To know that because of her, another little girl will not have to miss her last day of kindergarten. I selfishly wish that my daughter was the one being spared. That her last day of kindergarten tomorrow would be filled with laughing and running and playing. Instead we head to the clinic for a full day of blood and platelets. Another memory, stolen. How unfair her life has been, but how beautiful it has been as well.

Father’s Day

Journal Entry by Erin Santos — June 17, 2012

Happy Father’s Day to everyone! I am up early this morning, taking care of the dogs and about to run out for Stuart’s favorite breakfast but wanted to take a moment to write before the day got busy. The week seems to fly by so quickly. For the first couple of days this week, Isabella seemed to be getting better every day. So good in fact that Stuart and I nervously called the oncologist as we started to second guess ourselves. We knew when we placed the call that we were like every other parent going through this situation. We were grasping onto our last straw and praying that we were seeing a miracle. It was just too crazy to watch her do crafts, want to go to the pool, go to the movies… But, it was confirmed that it is just a cruel game and we were told that we are in the “honeymoon” phase of her dying process. Honeymoon phase? I think that would be the last thing I would have called it. It feels like the absolute meanest phase we have seen to date. She wakes up in the morning, walks downstairs, eats breakfast, talks with you like nothing is going on. You have to keep reminding yourself when you look at her that you are in fact in the dying process.. Which feels so hurtful. I think we had prepared ourselves for this swift death when we returned from Disney, but instead we have this somewhat normal child to look at every day. The stress of the week has been wearing down on us and once again I feel us on edge with each other and everyone around us. I know it is just the situation that is making us this way, but it becomes hard to be around each other. Stuart and I try to be calm but our frustrations are being thrown like knives at each other. We are trying hard to live better in the moment and give each other a break, but it is so hard. The doctors told us to really try and enjoy these days because the cancer will eventually break through, and they will be gone like that. Thursday was a great day for Isabella… Friday, things turned a little. Vomiting in the morning and just really not happy through the day. For about a week now we have not had to give her any medication for breakthrough pain or vomiting.. but Friday we started back on them. Yesterday was even worse. Vomiting in the morning that just continued onto anxiety for her. We had to medicate her with stronger meds to calm her down and decrease the vomiting.. but then you feel like you are just drugging her. She slept most of the day but was anxious to take Daddy to Red Lobster that evening for a Father’s Day dinner. She mustered up the strength to put on a pretty dress and comb down her bed head. We wrapped up his gifts which were a new water bottle with her artwork on it from school and a recordable story book. The book, I must say, was my last awesome thing to do when it comes to Isabella. I bought this adorable book that is about how I am always thinking of you or want to be with you when you are away. Very cute book but means even more when it is applied to Isabella. I worked with Ib for about an hour on Friday night, recording her reading each page. It is so priceless. She and Daddy went out to eat and she tried her very best to not be sick at dinner. But she struggled so much as she waited for him to open his gifts. They had to get dinner to go because she just wasn’t well and then the minute he put her in the car, she vomited. They walked in the door with a full vomit bucket just an hour later. I cleaned her up and put her to bed, giving her meds to knock her out. I feel so awful for Stuart and I know how hard that dinner was for him. He is breaking inside and sadness and pain are words that don’t even begin to describe it. The anniversary of his Mother’s death from cancer is this week and his birthday is on the 24th. I’m sick about the fact that I know Isabella is now going downhill and I just hate to think his birthday will hold this cloud over it forever. It’s like the last slap in the face after all of his hard work to keep her alive. So unfair and undeserving. But today I will do the best I can to give him a wonderful Father’s Day. We both know that it is the last Father’s Day he will have with 3 children, maybe even the last Sunday breakfast with 3 children. All we can do is hold on to every last minute we can.

What day is it?

Journal Entry by Erin Santos — June 21, 2012

I have sat down about four times to write in this journal but each time something pulls me away. The days seem so long and often I ask myself, what day is it? I seriously don’t know if it’s Sunday or Thursday. 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 shoulders 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 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.

Everyone is being so amazing and patient with us. Friends check in daily and do anything they can to help. I know it is frustrating because no one knows what to do. But sometimes just taking Stuart out for a drink, having a class or wine with me in my living room or taking Grant for a couple of hours makes a big difference. We get such great cards and letters in the mail from people that are touched by Isabella. We have had articles written about us (wonderful article by Jen Plym at Charlotte Smarty Pants Click HERE to read), spreading the word on Ib and helping raise funds for her foundation. Businesses are having “Isabella days” and donating their profits to her cause or sending things to our house just to feel like they are making a difference. We are blown away daily at how quickly the word is spreading and we are so excited to think of all the checks we can make out to fund research, grant wishes, etc. I love hearing all the people coming forward to be a part of it all.

Otherwise, we are still hanging in as best as we can. I wish there was some handbook on how to handle this or some brochure on how this is all going to happen. We just wake up each day and do what we can to get through it. Thanks to everyone for everything you do…we feel very supported and loved and it feels so wonderful during this hard time. Back to my baby.

Breathing…

Journal Entry by Erin Santos — June 26, 2012

Emails come in and it reminds me to update Caringbridge once again. Lots of wonderful emails from people who want to help. People want to bring things by that Isabella can do quietly in the house. These emails let me know that I have done a crappy job with updating you on Isabella. 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 visited today and 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 of 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 lets 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 to 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.

Sunday was Stuart’s birthday. Isabella found the strength inside her to come down and sing to him. Where she found the strength, I’ll never know. She gave him an entry to the NYC marathon this November 4th that will run right down 1st Avenue by Sloan-Kettering and the Ronald McDonald House of NYC. Stuart will be running on behalf of Fred’s Team which raises money for MSKCC’s Neuroblastoma research program. Stuart has lots of motivation for this run and he will amaze us all. She will be there in spirit cheering him on… and even in her passing, she is still trying to make a difference in the kids that will come behind her.

I’m at a loss for words. I love her so much.

Today

Journal Entry by Erin Santos — June 28, 2012

This morning, Isabella gently passed away from us.

Service details are still being determined and will be posted at a later date/time.

Thank you for your compassion.

How did this happen?

Journal Entry by Erin Santos — July 5, 2012

It was just six days ago that I lost her but it feels like an eternity. Moments go by and I forget that it has happened. I think that she is just out with someone. It all happened so quickly but the hours felt like an eternity. Tuesday night I got her up out of bed and put her in a warm bath with me. I knew the water would feel good to her and cleaning her would help her sleep. As she laid on top of me we tried to talk about things but when she would speak, the words didn’t make much sense and she was having trouble getting words out. I think that for the first time it made her nervous. She could hear herself and she knew it wasn’t right. Stuart helped her out of the bath and she was too weak to use the restroom or have her teeth brushed. We were supporting her completely. She curled up in bed and tried to watch “cats and dogs” with daddy but she was so exhausted. I was still giving her oral meds and pills every couple of hours so we were controlling pain, vomiting and anxiety pretty well. I remember giving her meds at 4 am that she took but when I woke at 6am, she could no longer take the meds. Stuart and I knew that morning that we had turned another corner and I started pushing all meds through her port from then on. When hospice arrived that morning, they confirmed that we had hours. Just the day before we were given a couple of days up to a week, and like that – we lost time. We began to allow people to stop in for a few minutes each and give her kisses and goodbyes. Each one was harder and harder. I just sat there and held her hand as the hours progressed. Her heartbeat was still going strong but her breathing had changed. The time between breaths was getting longer and longer as the day continued. I was able to curl up with her at moments throughout the day and we would nap together. It felt normal as I curled around her body and allowed myself to relax. We just laid together all day. Each time I had to get out of bed to get her IV meds together, I was scared. I knew that every moment was crucial. I remember falling asleep from midnight to 1:30 in the morning. As soon as I woke, I started to cry because I was so pissed with myself for missing that 90 minutes. She looked so different in just 90 minutes. Family took shifts with me as I tried to stay awake as best I could. Stuart caught a cat nap while my mom and I laid on each side of her. My brother sat in the chair next to us as we talked about anything to keep us awake. I would talk but watch her stomach rise. My conversation would come to a halt at times because I was waiting for a breath. I kept putting my hand over her heart to feel the pounding of it to keep me sane. By this time, her eyes were no longer closing. It made it hard to sit in front of her because they were no longer her eyes. I knew that she was gone but her body was trying to live. It was ripping my heart out that my daughter’s once beautiful face had become so painful to look at. I was able to sleep from 6-7:30 in the morning while Stuart and my sister kept watch. I knew when I woke and looked at her that it was time to close off our bedroom to family and have Stuart and I lay next to her. Her body temperature was dropping and her color was changing. I kept rubbing her hands, thinking that if my hands rubbed them enough, they would turn pink again… But they never did. I wish I could have sat behind her and just held her but I couldn’t. I had to sit facing her. I wanted her to know that I wasn’t afraid. I was going to experience every minute of this moment with her no matter how hard it was. I think Stuart thought she would go a couple of hours. But I knew by looking at her that it was time. Her breaths became scary.. Each one made me think it was her last. I could see the end of her line resting on the skin above her heart so I just watched it move so slightly up and down to assure me a part of her was still here. Stuart told me that I’m putting too much pressure on myself by not looking away. But I couldn’t. Her face changed. I don’t know how to describe it but it did. I knew that the next breath would be her last.. And it was. I sat there in silence.. Just holding her hand. I pushed away the end of her port and placed my hand on her chest. There was nothing. 9:50am. So many times in her life my hand was feeling her heartbeat and it wasn’t there. I just said, “Stuart.”. And we both knew it was over. I kissed her sweet face, her sweet hands and tears of pain were falling from our eyes.. Feeling like knives cutting our faces. We locked our door and knew that we owed Isabella the privacy she deserved as we got her together. I took off her port, her patches and her bandaids, freeing her from it all. Stuart carried her to the bathroom and laid her against him in the bathtub as I washed her body. We laid her down and dressed her in her favorite silk pony pjs and carried her back to our bed. We spread out her favorite blanket and put her head on her silky pillow as we wrapped her up nice and warm. I kept trying to close her eyes because I felt like it would scare Grant but they still wouldn’t close. Her color was changing quickly so I had to put some pink on her lips and cheeks just so grant wouldn’t notice her coloring. We brushed her hair and folded her hands on her chest. We let our family come in one by one and see her as we sat back, knowing we had truly done all at we could do. My mom picked up grant from camp and brought him home. We took him in to see her and he sat on my lap next to her and cried. He had lots of questions like how we knew she was dead, if she was just going to stay in our bed with us now that she wasn’t alive. So many innocent questions. Questions you never want to give the answers to. Sophia came in and crawled right up in bed with her. “Bye Belle” she said as she gave her a kiss and a hug and then off she went. The funeral home came quickly which was best. Of course the A/C unit on the second floor of our house went out over the last 24 hours of Isabella’s life so by this time in the process, our bedroom was 78 degrees and climbing. Someone told me that they were here to get her and I just kept thinking, please don’t be creepy looking. Please don’t have bad teeth or some cheap suit with a stain on it. Why was I thinking this? Stuart carried her downstairs and I swore I wouldn’t watch as they took her. But there I was, following behind in my pajamas watching every move. They placed her on a gurney and I kissed her head and told her I loved her. I had to turn away as they put her blanket over her face. I saw the bag underneath and I knew they were going to zip it over her. I had to turn away. When I looked back, she was in the back of a minivan driving away and I wanted to scream. I knew the cremation would be in 24 hours and I couldn’t handle knowing that she was going to be somewhere without me next to her in a building with strangers. But what could I do? Or that in 24 hours it will be like her body never existed. I wish I could tell you what happened the rest of the day but I can’t. And I’m sure you are all wondering why I am sharing such intimate details. It is because I am still blown away that it happened. You know children die from cancer. But to see it is unlike anything you have ever imagined. All the notes of “thinking of you, praying for you..” or my least favorite, “RIP Isabella”.. they all seemed like things I would have said to someone but they feel so weird to hear because the don’t feel equal to the situation If everyone had to witness what Stuart and I witnessed, there would be a cure for cancer. Instead of those comments, it feels better to hear, “I ran around my house screaming and punching walls today..”, or “I thought of Isabella and gave blood today or decided to volunteer”, or “I hit up my wealthy great uncle and he gave a million dollars to neuroblastoma research.”. Those feel more appropriate after what I saw. Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening. People say God needed another angel. If God can make giraffes and waffles and walmarts, then why doesn’t he just MAKE another angel? Don’t take mine. I know I’m in these stages of grief.. Denial, anger, frustration, sadness. I experience a new stage every hour. We had to bolt out of town for a couple of days because I’m literally tripping over her everywhere I go. Her flip flops, her placemats, her toothbrush, her book bag.. It’s punching me in the face at every turn. I need to clear a daily path when I get home so that I can at least function. So now here we are as a family of four in a hotel. The kids love the attention and excitement of a trip. But Stuart and I are so quiet. We are with them but not with them. To be honest, the kids are exhausting. We have been crippled by a sick child for so long that we didn’t go all day long with the kids. With healthy kids, who now have your full attention, it is non-stop. Talking, wrestling, cuddling, jumping.. It’s so different for us because one parent was always devoted to keeping things quiet for Isabella. Now that we are playing man on man defense, we are dying. While it’s great, we miss our quiet times because that is what we had for 5 years. Stuart and I crash in bed at night like we have just been with 10 kids instead of 2. It will take some getting used to. Grant tells every stranger that he has a sister that just went to heaven so we have that uncomfortable look at the pool from another parent, or a stranger just making polite conversation and asking how many kids you have or what i do for a living. It all comes back to her . Stuart and I are trying to be sensitive to one other, but at times we are like sandpaper rubbing against each other. When one of us is present in the moment, the other is with her and vice versa. We are feeling so out of place and empty. The blue skies and commotion are allowing me to not see her eyes for a minute so the trip is serving a purpose. But at night I am scared. Scared of that first dream when she visits me or I relive the moment. It only took 2 nights until I had that first dream and have had one ever since. I wake up exhausted because I’m fighting for her all night in my dreams. I don’t know when this feeling will pass or if it ever will. I’m floating along in space doing things, but in my mind I’m still rubbing her little hand, trying to bring the color back.. But the color is not coming back. Her service is in 2 days. I have been in the front seat for almost five years now and now I want to ride in the back. I can’t make decisions or barely give an opinion. Stuart is amazing, handling every detail of the service as all my friends around me tend to things that need tending to. My closet is a graveyard of pink dresses…Nothing seems appropriate but I’m figuring it out. Even as I type this I get the chills thinking of Saturday at 2:00 when it all starts. I’m so afraid to see everyone and have everyone see me. I have to hold it together but I’m not sure if I can. I am so broken and I feel like half of me is missing. I still just picture her a couple of months ago at the Make a Wish ball in her gorgeous fancy pink dress with a flower wreath over her head, dancing and singing and carrying her new puppy Lucy and giving hugs and kisses to everyone. How is she gone? How did this happen….