Closing out 2019 and starting 2020 fresh

Helping families affected by cancer
“Live on, follow their dreams”
 
It has been 8 months since Ellie earned her angel wings.  This blog has been weighing on me as I just wanted to sit and write.  Let my feelings release.  I did write during the process and saved it on my computer but I have been very hesitant to share with the world as I needed time.  Time to process, time to put my thoughts together and review those last days of Ellie’s life.  I also was hesitant because I don’t want to cause anyone pain. But I have realized this is how I need to heal.  Choose to read this or not to read this blog but for me I wouldn’t say to move on because we will never move on but to move forward, I needed to share this.
 
I am an open book and I love sharing Ellie’s journey with everyone.  With that being said most of the feedback I get from people is positive but once in a while there will be someone that wants to give me their negative opinion and I think that is why I have been hesitant from writing in the blog lately.  I don’t know if my heart can take any negativity.  The only thing I can say is that we did everything humanly possible to do right by Ellie with the advice of her world renowned medical staff.  Unfortunately, sometimes no matter what you do it just isn’t enough.  
 
I have had several people come up and ask if I knew Ellie was going to pass away.  I truly did not feel as if she was going to pass, I had faith and hope that she would fight through this tumor and live a long and happy life.  I was raised to always look for the positive and to have a positive attitude and we did just that.  I knew in the back of my head there was always a possibility but as a mother how can you not hope and wish and think there is a chance of a miracle?  As you read the last few days of her life in the blog you will see that I was making plans in my head, plans for the future, plans for Ellie to go back to school.  
 
Our lives have been flipped upside down this past year. Our family has endured something I do not wish on anyone.  We are doing our best to grieve and move forward as Ellie would say “Live on, and Follow your dreams” There is not a day I do not think of Ellie and all she had brought into our lives.  She was so sweet, kind, and determined. We are working as a family to figure out what our new dynamic is.  My heart hurts every day for my son as he is now an only child, my heart hurts for my husband as Ellie and him had an amazing bond that is now missing from our family dynamic.  We are missing a huge chunk of our family that could never be replaced.  
 
 With the help of family and friends we started the #elliestrong forever foundation.  We have have received a 501c3 status, the goal of the foundation is to help families that have been affected by cancer and to keep the #elliestrong movement going strong.  Also, to spread kindness through random acts of kindness. We have had several people step-up and do fundraisers for the #elliestrong forever foundation that has helped us get started.  I wanted to thank everyone that has helped support the foundation. We started off the school year by giving every kid in Old Quarry a #elliestrong bracelet and RAK card to go out and spread kindness.  We also gave RAK cards to the entire St. Al & St. Pats school.  We have a lot of ideas how to implement all the schools in Lemont into the #elliestrong Movement into Lemont.  We are starting off slow but we will gain momentum and the foundation will be unstoppable in the future.  
 
Mrs. Duffy (Ellie’s 2nd Grade Teacher) along with Trish Bliss with the help of Lemont Park District, created an amazing butterfly garden at the Lemont Park District in Ellie’s name.  It is located right in front of the tennis courts. I cannot wait till spring so we can once again enjoy this amazing addition to our community.
 
Ellie’s headstone was placed at her gravesite and her bench my parents gifted us.  
 
My Mom and Step Dad took our family on an amazing vacation to Hawaii in the beginning of August.  In January they asked Ellie if she could go any where in the world where would it be and her response was Hawaii.  My mom booked the trip while we where in the hospital in January.  Unfortunately, Ellie did not make her trip of a life time physically but she was there in spirit.  I cannot wait to share all the photos from this amazing trip. 
 
I will do my best to share as much as I can and try and keep updating the blog as #elliestrong journey has not ended it just is taking a different path. 2020 is going to be a new year with new adventures and we owe it to Ellie to make it a fantastic year.
 
I will be sharing photos of Ellie’s last day(s) of her life and they may be hard to look at.  I am just giving you a heads up in case you do not wish to see this.  These are not easy to look at, but it is our truth.  I only chose a few of them as the hospital offered a professional photographer to catch the last moments of Ellie’s life and I will cherish this forever. The hospital also provided other services like taking a lock of her hair and giving us a keep sake, a hand mold, and handprints. I am so grateful we opted in to have all these mementos to remember the amazing Ellie.  
 
WARNING:  This blog is NOT meant for children.  You must have your parents permission if you wish to read this blog.  ADULTS CLICK ON READ MORE TO SEE THE BLOG OF THE LAST WEEK OF ELLIES LIFE BLOG.  AGAIN WARNING THIS WILL NOT BE AN EASY READ OR EASY TO LOOK AT BUT IT IS ELLIE's BATTLE and I am sharing so I can continue to heal and move forward.
​

April 16th 2019

​We planned on today being a quiet just monitoring Ellie kind of day.  The doctors are concerned about Ellie’s neck pain and wanted to get a 3-hour MRI.  Sadly, Ellie was in the MRI for 2.5 hours and maybe got pictures for 10 min total as she could not sit still.  They decided it would be better if she is sedated.  The only problem with this is that if they do the entire head, neck and spine they will have to incubate her again.  Needless to say, they are waiting till tomorrow to make a decision.  So, Ellie’s blood pressure and heart rate has been really high, so at doctor during rounds tonight they decided to put Ellie on a blood pressure medication.  The nurse came in and told me the plan and just like that Ellie’s heart rate came down.  The nurse said it’s almost like she wants to keep us on our toes.  So, they decided to hold off on blood pressure medication because they don’t want it to get too low because that could cause problems also.  During all of this Ellie’s pic line stopped flushing.  They put a medication to try and break up any blockage in it and sure enough it started to work again.  Well that just wasn’t enough drama for Ellie so she started spiking a fever which is a sign of infection.  So, they did a full workup and checked everything.  I had to wear the full outfit along with an awesome mask during this so I could hold her hands down.  After we were done Ellie’s eyes started rolling back and my anxiety started to kick in because it was bringing back memories from previous days when she was unresponsive.  The nurse calmed me down and said she is just so exhausted from doing the full workup.  Dave and I decided it would be best around 8:30 to go to the hotel as I was just sitting there stressing.  My mom was with her.  Shortly after we left my mom called and informed me that Ellie’s temp had come down, but she also had Tylenol but at least the Tylenol was keeping her temperature down for the time being.  This gave me some peace of mind and I am thinking I will be good to sleep tonight.  My mom has strict orders to call me with any changes so I can rush back.  But I am hoping Ellie will sleep comfortably.  We have a nurse we have had in the past and enjoy immensely. 

April 17, 2019, Day 19 in ICU

​I am going to attempt to write this post with all my ability. Ellie had an MRI and was gone for 4 hours.  She came back to the room and is super agitated.  Tonight, Jake and my sister are coming, and I am hoping and praying that this gives her a boost of happiness.  It just isn’t fair this girl has been through too much... 
 
Soon after Ellie arrived back to the room the Neurosurgeon and Oncologist came in and requested that we leave the room and go into their conference room to discuss the results. Whenever you get called into a separate room and more than one specialty is there it is never a good sign.  They showed us Ellie’s scans and explained that the tumor had spread completely surrounding her brain and down Ellie’s spine and the cancer is taking over her body in just a short two weeks.  They explained that she will lose hearing and ability to walk and possibly talk.  They are going to give her steroids to try and slow down the progression.  They did not have anything positive to say about this. They want to get us home and then we need to make a decision to try and fight this tumor or just make her comfortable. They described the tumor spreading like wildfire.  I held it together and looked over and my mom was crying so at that point I yelled at her and told her she was not allowed to cry.  She pushed back the tears and became the strong one so I could break down a little. Dave was hugging and holding me as the doctors talked to us.  They explained that they felt Radiation and chemotherapy would not work against this tumor that this was very uncommon as this tumor was known as a slow growing tumor and they have never seen this. I was shocked how could there not be anything that can fix this or fight it?  I needed to speak with Ellie’s doctors in Chicago.  They have resources to studies and other treatments they cannot offer in Miami.  I really felt like I could not believe anything until I spoke with Ellie’s team.  Dave and I went to the family room and in 9 years of fighting with Ellie I have never seen Dave break down and cry until today.  He was hyperventilating crying.  When he lost it, I lost it even more how is it my rock was breaking down.   Unfortunately, we needed to pull it together and get back to Ellie.  This just isn’t fair we are losing our baby, and everything is flashing in my head right now.  I cannot function I feel like my body is shutting down.  I just want to curl in a ball in the corner and cry.  I want to sleep and wake up and make all this go away.  Have my girl back.  I need my girl back.  She is such an amazing young lady, and this just isn’t fair.  I know god has a plan, but really what is it?  I need my baby how do I get my baby and keep her. I refuse to give up.  I REFUSE…
 
So, what’s next for us?  The plan is to have surgery Friday to place the shunt back in and then hopefully get Ellie stable enough to be airlifted Monday back to Chicago. From there she will be in ICU in Lurie’s Children’s hospital

Jake finally arrived and it was so great to see him.  It was nice to be able to hold one of my kids close to me as Ellie was hooked up to so many machines you couldn’t really cuddle or hold her. Jake arrived and Ellie’s first question for Jake 
was “how are the dogs?” 
Jakes response was “Sam is lazy, and Bonnie is crazy”
 
Shortly after Jake arrived, I received a call from Ellie’s Oncologist in Chicago, and he said we could try radiation and that it’s not off the table.  But we needed to get home first. This gave me great hope.  I was so happy to hear there is a chance.  I was not getting that feeling from the doctors here in Miami.  
 
 I don’t think I can physically or mentally write any more at this point.  Till tomorrow.  We need to get back home that’s all I have to say whatever it takes

April 18, 2019, Day 20 in ICU

​As soon as my sister-in-law heard the news of Ellie’s tumor spreading, she got on a plane and flew through the night. It was so nice to have her, my sister, and my mom by Ellie’s bedside so we could just focus on Jake and do something fun with him.  Dave and I took him to the Science Museum (we only went for about 4 hours, but it was a great 4 hours) and I really enjoyed spending the day with him. After the Museum we went back to the hospital so Jake could say goodbye to Ellie as he was getting on a plane first thing in the morning on Friday.  I told Jake, Dad is going to be home on Saturday and the plan was that I would be flying home with Ellie on Monday. Jake was so excited that we had plans to come home finally.
 
The difficulty juggling two kids one that is terminally ill and another in a different state has its own challenges and stresses.  I am so fortunate to have such a huge support system with family and friends that help with this. 

April 19, 2019, Day 21 in ICU

​Surgery Day.  We dropped Jake and Kelli off at the airport nice and early and headed to the hospital before surgery.  The surgeons came in first thing in the morning to explain they will be having a whole another pediatric surgery team come in to make sure that the tumor had not spread to the stomach.  If it spread to the stomach, they would have to put the drainage in the heart.  How many surgeries can one girl endure in such a short period of time.  But no matter her pain she was willing to take photos with everyone before they took her back at 7:30am. Little did I know at the time how much those photos would mean to me today. 
 
The doctor came out to tell us that Ellie made it through and was doing well.  There was no tumor in the stomach, and all was fantastic.  They asked us to come back to recovery a little earlier than they usually do because they wanted to get a read on if Ellie was in pain as she was not speaking.  When I went back my heart was breaking for Ellie as she looked like she was in severe pain and she just didn’t look like herself.  She kept on trying to grab at me and pull herself close to me like she wanted to tell me something.  All I wanted to do was hold her and hug her and I couldn’t unfortunately, there just was too many tubes and IV lines.  They only let two people in by her bedside, so I wanted to give everyone an opportunity to see her. I decided to let her Aunt come see her and while we were switching Dave told me that “Ellie blew in his ear and then Dave blew back in her ear” they had their little interaction that was Ellie’s way of communicating with Dave in their own language.  
 
Ellie got back to the room and in true Ellie fashion she was keeping us on our toes. Ellie had a seizure and wouldn’t come out of it. So, they ended up sedating her and intubating her. She was now in a holding pattern now. They have an EEG on Ellie and are watching her for seizures. I swear Ellie wants to come home even though her body is fighting it. I am such a mess and so grateful to have my sister in law with me. She is holding Ellie and calmly talking to her.  Sitting and praying my babies head is healing while she is resting. I just showed the nurse Ellie singing and it gave her chills. They have never seen Ellie at her baseline here.  How could this be Good Friday.  Nothing Good is happening I just want to talk to my girl.  ​

April 20, 2019, Day 22 in ICU

​Today is a hard day Dave was supposed to go home but cancelled his flight as last night was a tough night.  We almost lost Ellie.  Ellie's stats started dropping and all the teams ran over to care for her.  Dave and I, where just sitting in the hallway holding one another.  Lucky my sister in law is used to all the medical lingo so she was our spy she held Ellie and spoke with her while the doctor where working and because of her qualifications they didn’t kick her out.  They felt she needed to have her shunt tapped and so they called Neurosurgery, but it was touch and go.  I have never felt so hopeless.  The ER doctors came and asked if they should resuscitate her if it gets to that point.  At this point I felt all the air in my body leave and I was hyperventilating.  What parent wants to make that decision. How could they ask that of me?  How do I answer this?  I just stared at them what felt like 20 minutes without an answer but in reality, it was only a minute before my sister in law snapped me out of it and helped me. Myrlee said “Kyle, we are not there yet” I immediately said “yes, bring her back to me.  I just felt like she needed to get home and her doctors would take care of things.  I was still hopeful that we had not tried everything.  The Neurosurgery came in and tapped her shunt they were able to get her vitals under control.  But they informed us that the shunt wasn’t the problem it was the tumor.  So, after this we all spent the night in the hospital room taking turns by Ellie’s bedside. So, one person was at Ellie’s bedside, one person slept on the upright chair, and two slept on the pullout couch.  I am so appreciative the nurses let us stay the night. They don’t normally let family do this but there was no way any of us where leaving.  It was a long night with not very much sleep for any of us, but Ellie pulled through overnight. 
 

April 21, 2019, Day 23 in ICU

Day 23 in the Hospital and no change in site. Hoping and praying for a miracle. We had to say goodbye to Aunt Myrlee today, but Papa is now here too. Ellie is just way too sick to air transport her.  It’s Easter but doesn’t feel like Easter.

Ellie kept posturing every few minutes (looks like a seizure) but looks much more painful. Ellie was not able to speak to us still but when she looks at me, I feel like she sees me and understand me.  Because of the posturing had become so much to handle for her they decided today to put her in an induce a paralyze State coma so her body can rest to help it heal. Tomorrow morning, they will take her off all that medicine and reevaluate. We did get out to a Cuban restaurant with my parents today as Ellie is resting and was in really good hands with our nurse Melinda. We would not leave without them promising if anything changes, they needed to call us.  I think this was the first time that we all left Ellie.  I have been spending most of my day praying that her brain can heal from this trauma and that tomorrow morning she will wake up and things will look better. She’s a fighter if anyone can do this it’s her.
 
The head neurosurgeon met with us and explained that we have to begin radiation right away as soon as we can stabilize Ellie enough.  He explained that if Ellie was still in Miami on Wednesday, we would start radiation.  Once Ellie began radiation in Miami, she would not be able to go back home for at least a month.  There radiation facility is about 30 minutes away from Nicklaus Children’s Hospital so they would have to have transport team take her every day to the other hospital to have radiation treatment.  So, this put a little fire in me to get her home even more.  We have to get Ellie stable and get her home.  Unfortunately, it’s not looking very promising at the moment. 
 

April 22, 2019, Day 24 in ICU

So, if you know my husband you would know being away from work this much is killing him.  He is juggling the stress of Ellie’s medical needs, thinking about work, and financially being responsible for our family.  So, we made a decision that he would fly home today and head back to work.  I wasn’t sure how long we were going to be here, and Ellie just does not seem like she will be stable enough to move anytime soon.  I'm so proud of his work ethic and how he feels the need to provide for our family, but he will be missed greatly here. He said his goodbyes and that  I'm sure was really difficult for him.  I will miss him so much but hopeful it will be only a short time. 
 
When I got back to the hospital Ellies eyes are open and she looks reactive to me like she knew I was there. They slowly started to remove sedation. Dr. Meyers (our angel in disguise) an ICU doctor was doing rounds with all the attendees and fellows.  He asked me what I wanted to do.  And I said I just want to get Ellie home.  He then said, “then we will make it happen, I’m on it.” I felt like he would have to move mountains in order to get this to happen.  He came back a little later and told us that it was about 75% there and that if it’s not all in place by 5pm that it won’t happen today. I was impressed he was even 75% there because all other avenues just didn’t seem to be happening.  The doctors decided to put Ellie back into a paralyzed and sedated state to make sure that if she was going to be leaving that nothing derailed the plans. 
(Thinking back as I read this, I wish I knew that it would have been the last time my daughter would have looked in my eyes.  The last time I would even interact with her.)
 
About 3pm Dr. Meyers came in to let us know that it was 90% in place.  I was in awe at how he was making things happen.  He told me that the issue is that Lurie Children’s would not transport Ellie because she is in such delicate condition, also that all other flight crews where not equipped to handle this type of transport.  It was a very complicated transport all around.  He then said he wanted his team to take her but wanted to add a doctor to the team. So, he came back in close to 4:30pm and informed me I would have to sign a special waiver that was not normal and say it was a heroic flight and the likelihood of her dying in flight is very high.  I of course signed the waiver as I told the doctor I don’t want her to die here.  I felt like the risk of transporting her every day to another hospital via ambulance for radiation was just as dangerous I would rather take my chances with one flight home.  Then about 5:00pm he came in to tell me that he had good news and bad news.  He was able to nail all the pieces together to get Ellie home but unfortunately, he could not get a big enough plane for me to be able to go with.  He said it could take about 2 days to get a bigger plane so my options where to send Ellie without me or wait a couple more days.  My first response without thinking was send Ellie home, Get my baby home.  I didn’t want to wait 2 more days because then she would have to begin radiation there in Miami and she would be stuck there for at least 6 more weeks.  I started to plan for Dave to land at the airport and head straight to the hospital to intercept Ellie.  While I was making plans, Dave had no idea as he was up in the air on his way home.  So, I was making plans with my Dad and sister to retrieve Dave and get him downtown before Ellie was to arrive. Then about 30 minutes later the doctor came back and said “we have room for you.  I got my hands on a bigger plane, but you cannot bring anything with you.”  I was so relieved and happy to go; I didn’t need anything.  The process was one of the most complicated processes I have ever seen.  The Doctors where discussing every scenario that could happen up in the air and making sure all medications where on board in case of each scenario.  They also needed to plan for 6 hours of the medications Ellie was on to make sure she had plenty to get her to Lurie children's in Chicago.  They began the planning of the medications around 12 noon.  They had to disconnect her from the IV pole and put the medications onto a different system to take on the plane.  I was losing my breath just thinking about how complicated this was and I kept on reminding myself we need to get her home.  
 
I took a photo of the largest IV pole I have ever seen.  I just kept on reminding myself we are taking a risk, but they would have to do the same thing every day for 6 weeks transporting her here to radiation.  We are taking one flight risk to get her  home.  
 
They had so many transport teams working on Ellie it was incredible.  I asked him if they ever have done something so complicated, they told me no.  I gave each of them a #elliestrong bracelet and they gave me patches off their flight suits to give to Ellie. 
 
We started the process heading to the Helicopter that was going to take us to the the airplane.  As we went up in the air, I watched my Mom and Stepdad watch us take off.  I was sick to my stomach it felt like someone knocked the wind out of me and I couldn't catch my breathe.  We traveled in helicopter about 15 minutes to the airfield where we were met with another team of people. Another complicated process as they had to keep Ellie completely level when putting her in the plain.  I just kept praying the entire plane ride to get Ellie home safely.  We had to fly at sea level because they had to be very careful with the pressure due to Ellie’s brain pressure. I did not take my eyes off Ellie the entire flight.  I remember the Doctor working on her constantly while in flight along with the nurses on board.  Once we touched down in Chicago the roughest ride came from there, the ambulance on Chicago Pothole roads.  My heart jumped every time we hit a bump.  I kept thinking we can make it, we can get to the hospital.
 
When we arrived at the hospital there was an entire team waiting for us.  The nurses told me they had been waiting for us that we have been on their list for a few days and every time they thought we were coming plans changed.  By the time they got everything settled and the Doctor from Miami briefed all the doctors and nurses in the ICU.  I finally was able to roll into bed or the chair to try and sleep at 3am.  Ellie was here she was safe and stable.  I needed much needed rest. 

April 23, 2019, Day 25 in ICU (now at Lurie Children's in Chicago)

​Today I woke up feeling a sense of home and hope.  I was familiar with this hospital the doctors and nurses.  I received a phone call from the news telling me they wanted to interview me and give update on Ellie.  I was hesitant I didn’t want to leave Ellie at all.  The reporter told me she would just need a few minutes of my time at the park across from the hospital.  How did I not know about this park, how did I never notice this park the hundreds of times we have been down here.  I agreed to the interview that would take place later this afternoon.  OMG I just agreed to an interview.  I have not showered in two days, I have nothing but the clothes on my back after flying over night home with Ellie, am I crazy.  I called my sister and she was on the way to the hospital and brought me a hairbrush and helped me look somewhat presentable for this interview.  Ellie was still in her coma and seemed peaceful.  I headed across the street for this interview, sure enough it was a quick interview and I headed right back to be with Ellie. Dr. Goldman came in to speak with us also the Northwestern University Radiologist to tell us the plan.  They were going to spend several hours setting up to give Ellie her first dose of radiation later that afternoon.  Dr. Goldman was hopeful that after a few doses we would notice a difference in Ellie’s status.  I was so grateful to Ellie’s nurse because she washed Ellie’s hair.  Ellie would be so upset if she knew that her hair had not been washed in, I don’t even remember the last time it was washed. My mom and stepdad arrived at the hospital after traveling from Miami just in time to see Ellie before the transport team took her.  Northwestern has an underground tunnel that is connected to Lurie Children’s for these types of instances.  It made me really appreciate the move that the Children’s hospital did years previously.  Ellie needed a transport team to take her because she was so critical.  After they prepped for hours, they finally took her, and we took a break and had Pizza at Northwestern Café.  I remember distinctly saying to my family “When Ellie goes back to school, I need to work on getting her caught up”. My family stopped me and said, “one step at a time”. I think I was in denial I truly believed this was going to be the miracle we were looking for.  8pm rolled by and we got the call that Ellie was heading back to Lurie Children’s.  We headed back over to meet up with Ellie.  The doctors decided to hook her up to an EEG to watch her brain waves overnight and see if there are any changes.  

WARNING THE FOLLOWING IS ABOUT ELLIE'S LAST DAY AND MIGHT BE HARD FOR MOST TO READ AND SEE... 

April 24, 2019, Day 26 in ICU (Day 2 at Lurie Children's in Chicago)

​At 1am I woke up to go to the bathroom and looked at the screen of the EEG they had hooked up to Ellie’s brain and it looked like her brain waves had slowed.  I kind of ignored it and went back to bed hoping that in the morning that it would be back to normal.  When we where in Miami this happened once before when she was in a medically induced coma. But the next day her brain waves where back to normal.  I slept on the chair and my mom slept on the couch bed.  I was planning on going home and getting a good night sleep but decided against it because Ellie just had radiation the night before and I wanted to be there incase she woke up and her tumor improved.  I was startled at about 6am when I woke up to all the doctors and nurses standing around Ellie and Just looking at the screen.  The doctor then told me that not in so many words Ellie’s brain waves where not existent.  My heart sank as I looked at my mom and we both where in shock.  I thought this was the answer, I thought a miracle would happen.  The night before while she was in radiation I was talking about her getting back to school. There is no way that days before was the last time I would ever speak with Ellie.  How can that be.  Then more doctors arrived and her Oncologist which asked to speak with us in another room.  Dr. Goldman is one of the most amazing doctors I have ever met.  It was not his job to deliver the news, it was not even his floor for treatment but he had such a special place in his heart for Ellie and wanted to be the one to speak with us.  My mom and I entered the family room and I already had an idea what he was going to tell us.  
 
Whenever we are pulled into a different room it usually means its not good news.  
 
He then explained in the kindest words that Ellie was so special to him and they could have never predicted this would have happened especially this fast.  Ellie no longer had brain waves and possibly could leave us at any minute or it could be days, weeks, months.  That they are happy keeping her alive as long as we would like but that we could also make the decision to take her off life support in our own time.  As I cried I just remember saying “No she has suffered so much already she would not want to be laying as a vegetable.  Let me call the immediate family and then we will decide to let go. “ 
 
I called Dave and my mom called the rest of the family to come immediately to say their good byes.  They had a Chaplin there to spend this time with us, but I told my mom she needed to call Terri O’Neal, Lemont’s Angel to be my Chaplin.  She came immediately. Terri made every aspect of this process so much easier.  She said amazing prayers with our family over Ellie. Once the family was there Dr. Goldman took us all in a room to tell us that we just need to tell him when and to share some memories he had of sweet Ellie.  Him and Ellie had a very special relationship.  He would try so hard to get her to smile and Ellie would try so hard not to give in.  He then told us to take our time and let him know.  Dr. Goldman also wanted to let me know that we did everything we could and that he was really happy we went on this vacation and gave her one last fun time.  He expressed there was nothing that could have changed the outcome. This tumor never has done this in all the studies and that once again Ellie made the record books.  Ellie always had to be special. 
 
Everyone said their goodbyes.  As everyone was saying their goodbyes I was starting to plan the funeral/ celebration of life with Terri.  I know it sounds strange to plan her funeral before she is actually gone but I felt like that was the only control I had over the entire situation and needed to plan in order for me to get through this process. Dave and I made the decision not to have Jake come to the hospital to see this.  We just didn’t want his last memory of Ellie to be of her like this.  I still to this day wonder if that was the right decision but He always expressed how he didn’t like seeing her in the hospital with all the machines so this was 10x worse. Terri said the most amazing prayer, she was my rock this day.  I don’t know what I would have done without her.  
 
After everyone said their goodbyes Dave and I spent some time alone with Ellie before we gave the go ahead to take Ellie off the machines. And then just us two where in the room as she slowly slipped away.   I was most excited to be able to get close to her and just hold her.  It had been so long since I have been able to hold her.  I just wish I could talk to her again and tell her I’m sorry and get her wishes.  It was probably the strangest feeling as she slipped away and her body became cold.  I just wanted to make her warm.  I have never felt a dead cold body like this before.  It was my first experience of this.  I was there after my grandpa passed but don’t remember cuddling him like I cuddled Ellie.  
 
During our goodbyes they informed me they had a volunteer photographer that took photos of the family and our goodbyes.  I was skeptical if I actually wanted this and hesitated said yes.  He was so good I didn’t even know he was there the entire time. We received a book about a month later with all the photos and now I am so happy we took advantage of this as it will be something I will cherish for the rest of my life.  Every time I look at it I end up in tears but I love looking at it and keeping Ellie alive in my heart.  They also made handprints of Ellie’s hand for a keepsake.  I must say the hospital did an amazing job making it a very respectable and memorable processes.  I could not imagine being one of the nurses that has to say goodbye to the kid’s day in and day out.  It takes a very special person.  
 
I watched Ellie’s heart beats slow as I cuddled her and the doctor checked her vitals and called Ellie’s time of death.  To this day I still don’t remember what time it was when she left this world because I was so wrapped up in spending every last moment with her and Dave.  I decided to help the nurse wash Ellie’s hair one last time.  It was actually a very peaceful process and as our family always does we find the laughter in every situation to get through tough situations.  I knew Ellie would want to have clean washed hair even though she was going to go under one last surgery before heading to the funeral home.  Dave and I decided to donate Ellie’s brain and spinal tissue for research.  It was so important to us to help other families so that they might not endure what we went through.  We really wanted to donate her organs but they informed us that her organs where no good as they had been so damaged through this process.  I was happy to at least help research.  
 
Slowly my family started to leave the hospital and all that remained was my mom, myself, Dave, and Ellie. Then I remember it just being my mom and myself and Ellie which was our normal at doctors as my mom went to every appointment with us.  We finally said our goodbyes right in time for rush-hour because it wouldn’t be a normal hospital day if we didn’t leave at rush hour.  I was still in disbelief on the way home.  It just did not seem real that Ellie was gone.  On the way home we received a call from hospital asking if I wanted to donate Ellie’s eyes and I just couldn’t do that I don’t know why I was able to donate her brain and spine but not her eyes.  I was actually devastated that I couldn’t let go of her eyes to help another child but my mom was great comfort as she told me we had given so much already and that I should not feel guilty.  Ellie was always part of studies through Lurie Children’s. 
 
I wasn’t sure how we where going to break the news to Jake that his sister was gone.  Every aspect of this day was hard but this was going to be the hardest for me.  No parent ever wants to break devastating news to their child.  I was so blessed that Terri agreed to come over in the evening and help me tell Jake and she also went to my sisters to help her tell her kids as our kids are like siblings.  Unfortunately, somehow word got across social media that Ellie had passed before we had the chance to tell the kids.  Sadly, my oldest nephew found out this way but the rest of the kids luckily did not know.  Jake was at Lacrosse practice so he was busy and didn’t see any social media.  
 
When we told Jake I will never forget this face, his eyes got really big and he was in complete shock.  My heart was breaking for him. I know he was not meant to be an only child and this was going to be life changing for him.  So now only did I lose my amazing girl, but I broke the spirit of my only child I have left.  As Terri was there helping tell Jake her phone alarm went off to pray for Ellie as it did every night at 8:30pm.  We all said a prayer.  Jake just wanted to be alone and I just wanted to be close to him.  We gave him his space so he could grieve in his own way. 
 
I did not sleep much that night as my brain ran rapid.
 
I am sharing some of the photos taken from Ellie’s last day on earth.  I wont be sharing all of them as some are just too personal and private. I feel so incredibly lucky to be able to have called Ellie mine. I also get many questions about Ellie and her final days and hopefully this will help answer everyone’s questions and help me heal a little.  I wish everyone a Happy New year as we are starting a new chapter and making Ellie’s life count.  

Our last family photo on the cruise.