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.
1st off I am feeling very accomplished because I have finally caught up on blogging
Thursday, April 11
Today has been a day full of drama from the moment we woke up. I woke up super excited thinking that today was the day that Ellie was going to be Medi Vacced back to Chicago. I felt rejuvenated. My Mom and I started to packing up the room. Everyone that came in knew the plan was to get Medi-vacced today. As we packed the room I realized we had gotten extremely comfortable here in the ICU. There was allot of packing to do. Then the Social Worker came in to speak to us. She said I have good news and bad news. “Good news it that Lurie Children’s has a room for you and is waiting for you. Also our Med-Vac team and Lurie Children’s are waiting to get you out of here. The bad news is that the Med-Vac has been denied by your insurance.” She then informed me that we needed to make an emergency appeal with the 399 Local for approval for them to get Ellie home. They cannot treat her tumor here with the Radiation because Pro-ton beam is not available here in Miami. Also they said she needs to be in a full time rehabilitation center eventually so they want to get her back home so they can work on treating her all around. I felt immediately deflated. During all this commotion we had a Pastor visit to say a prayer, we also had the doctors doing rounds. I immediately got on the phone to the Union and requested an emergency appeal. I felt extremely overwhelmed. The social worker said that the medi vac-team wanted to get out before the storm was suppose to hit Chicago so they could land. So we sit and wait for word on how this is going to go. In the mean time we had Ellie’s therapist come in and work with her. Ellie was very lethargic today and just not herself. At one point she was not making sense. She kept on talking about the Oregon trail and I was asking her who I was and the simple questions and she just kept talking about the Oregon Trail. I called Neuro Surgery Nurse Practitioner and the ICU Doctor to discuss this issue. First the ICU doctor came in and spoke to us for a bit but said he needs to defer to the Neuro Surgery as its their specialty. When the Nurse Practitioner came in she said that it could be all the new medication Ellie is on. They are constantly changing doses and medications as they try to figure out what is going on and how to get everything under control. About two minutes after she left the room Ellie said she needed to use the bathroom. My Mom and I started to get her up to use the Commod with the nurse and Ellie’s head tilted back and stiffened along with her arms and body. Her eyes rolled back and she would not respond. The nurse called for the other nurse and Neuro Surgery Nurse practitioner to come in. Then they pulled the code button. My mom and I where hysterical and so nervous we stepped back and just watched then nurses and doctors take over. This lasted about a minute but once again felt like an eternity. It presented as a Seizure but half of the team said it looked like something called posturing. I guess Posturing presents as a seizure but it happens when there is too much pressure in the brain. When Ellie came too my mom pulled herself together but I was still a mess so my mom told me to go down and get something to drink from the family room and pull myself together. They sent Ellie for MRI and determined that her ventricles had enlarged and her brain was once again filling up with fluid. They dropped her shunt number down so it would drain more fluid and they tapped into the Shunt to release some of the pressure. Immediately Ellie seemed more awake. They did an ultra sound to see if there are any kinks or problems in the line, they also checked the shunt in her head. They did not see any issues in the shunt or the line. At this point it was about 10:30pm. The Neuro Surgeon resident told us to keep an eye on her throughout the night and they will check her in the morning. With that being said I am on the first shift for the night and decided to try and catchup on some blogging as I feel way behind and everyday I get more behind.
Friday, April 12, 2019
The Drama continues today.
So last night I stayed up till 3:40am and then my mom took over and took morning shift. It has been a long exhausting day. The night was uneventful with just the normal with Ellie restless and up most of the night. Today was a crazy emotional roller coaster day. I’m not sure how much more my emotions can take at this point. Ellie woke up this morning very tired and in allot of neck pain. The physical therapist came in to work with her and when she sat Ellie up in bed Ellie started to have a seizure. They pressed the code button and there was a rush of doctors and nurses in the room. Ellie did not respond for about a minute or so. Right after this happened they put her on a EKG which was another disagreement among the doctors as some doctors wanted Ellie to go get the Isatop shunt study immediately and others wanted to get EKG leads on so they can try and catch a seizure. The Isatop shunt study is where they put a solution in her shunt and watch it through a machine as it goes through the shunt to make sure the shunt is working accurate. After going back and forth because the machine for the study wasn’t available they put leads on her. They then took her for the Isatop shunt study. The Surgeon, nurse practitioner, and several nurses came with us for the study. They rushed her down as quickly as possible. So as they did the study they found that the flow of the shunt was good and no issues. So then we went back up stairs they wanted Ellie to lay flat with no movement because they where thinking that Ellie’s brain is being deprived of blood and oxygen every time she makes a sudden movements sitting up and or laying down. Neuro Surgery felt it was not a problem with the shunt. They decided from here that they would up the blood flow to Ellie’s brain by raising her blood pressure. The nurse came in and we changed Ellie and she was laying flat the entire time. She was all clean along with the sheets and the nurse walked out of the room and my mom stepped out. I noticed she was having another seizure. I ran out grabbed a nurse and they called the code again and once again the room was filled with nurses and doctors. This time Ellie seizure lasted for 3 minutes and they where able to catch it on the EKG and determined they felt it was a seizure deep in the brain. They put in an artillery line to monitor her blood pressure internally. Unfortunately, then again a few hours again Ellie started presenting like a seizure but this time it was something they call posturing. Posturing happens when there is too much pressure in the brain. Once again the code button was pushed and the room was flooded with medical staff. Unfortunately, Ellie did not come out of this and was unresponsive. It was extremely scary as they tried so hard to get her awake for sometime and no response. The Neuro Surgery team tapped her shunt and drained some fluid to try and wake her up. Unfortunately, it didn’t work so well. So they rushed her into emergency surgery but they actually made her ICU room into a surgical procedure room to do it. They wanted to get this done immediately so moving Ellie would take some time. It was easier and faster to do the procedure in the ICU room. The plan was to remove the tubing that is flowing from the brain down to her abdominal and keep it external and drain that way. My mom and I waited anxiously for Ellie to come out of surgery in the ICU Family Room. The doctor spoke with us and explained that this way they will be able to monitor the flow of fluid from the brain. So the procedure was done and the flow was not very much so the nurse had to manually pump the shunt valve with her thumb every hour. So basically imagine taking your hand and firmly pressing on your side of your head every hour so that liquid would come out. Then the Neuro Surgeon tried tapping the shunt again to relieve some pressure of the fluid for the night so they could do surgery first thing in the morning. When she went into tap the shunt she could not get any fluid out and at that point they decided to take her to the OR for emergency surgery immediately. The plan was to remove the shunt completely and put an external drain in Ellie's head. So basically back to square one we go again. It feels like ground hog day around here. So we waited and waited Ellie was finally out of surgery about 1:40am and we got word everything went well. They did an MRI to double check she didn’t end up having a stroke. We where thrilled to find out that Ellie had not have another stroke. The doctor said hopefully this will do the trick and they where hopeful we would see improvement tomorrow. At this point my mom and I where physically and mentally drained. We got back to the room and had to wait outside while they did some more tests. Once we got to bed I think it was 3am we slept so well even through all the beeping and lights and nurses in the room all night.
Saturday April 13, 2019
I was so thrilled to see Ellie was able to open her eyes this morning. It has been a very uneventful day, which is perfect. Ellie has been resting most of the day. Dave flew in this morning thanks to a very generous person who booked a flight with there frequent flyer miles. We didn’t think Dave was going to be able to come but when Ellie took a turn for the worse we made a descion that it was best he was here. And when Dave came in Ellie said “Where have you been” It was very cute. She sure does love her Daddy. I fell rejuvenated having Dave here too. Best part was my mom and I got to go to a Hotel last night and get a good night sleep. With three of us here we can take turns at the Hotel. So we rested really well last night. Dave said Ellie was up from 1am on. She is very restless and cannot stay still. But I would rather her be restless than unresponsive.
Tuesday, April 16, 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 has been really high and her heart rate has been high also all day so at doctor during rounds tonight 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 its 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. 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 un responsive. 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 strike 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.
Wednesday, April 3rd
it was a rough night for Ellie. Her arteries in her brain kept contracting and her blood pressure was spiking all night long. Something clogged the external tube around 2am so Neuro Surgery came in and flushed tube. She can lift her right arm today. Every little step forward is a step in the right direction. They got her a brace for her right foot. This will help with positioning. She is really depressed. She takes a long time to answer back when you talk to her but she try’s. We are very happy she can talk, just very slow processing and not many words. It’s going to be long journey. They cannot put shunt back in until they figure out what’s going on. She is able to eat today, we just have to feed her and it’s very slow. She did get a visit from therapy dog but we couldn’t get a smile out of her. That’s when you know she doesn’t feel well when she can’t even smile for a dog. I think she is really missing her dogs as I am also. Physical therapy came and sat her up but she could not sit on her own. She has lost all core strength and its going to take allot of therapy to get that back.
Can’t sleep, wondering what today will bring, thinking of my boy back home that just wants his dad and I, hoping that Ellie’s white blood cell count comes down so she can have surgery today to put shunt back in, using this time to pray to god to heal Ellie so we can make our way back home and begin fighting this tumor with Radiation, Thinking about how we are going to have to do some changes to our house to accommodate Ellies special needs from the stroke, thinking how blessed we are to have the support of our family, friends, and community standing by us during this fight, thinking that everyday she has this open wound with tube is another day she can catch an infection, thinking how lucky I am to have both my mom and Dave here this week. Just thinking I wish I could hush my brain for a bit. We said good bye to one of our favorite nurses today in hopes that we will not be in ICU next time she works next week. She did say she will sneak upstairs to visit and see Ellie next week. As much as I love these Neuro ICU nurses I’m hoping we make it back upstairs next week.
Ming our awesome nurse is #Elliestrong
Thursday, April 4th
Surgery is a go this morning. Ellie will be in ICU for at least two days and then here for a week at least. Her white blood cells are high but they think it’s the steroids but they are taking extra precautions with not allowing extra visitors besides myself, Dave, and my mom to keep infection away. Ellie was up most of the night and just had extreme pain. We are working on getting something for her pain medication right now but unfortunately she needs to stick to Tylonol so it doesn’t mask other symptoms. Dave hugged her and was able to calm her down a little. As the pain gets higher the more she has a hard tiem breathing.
Fast forward to 12:00pm/Noon
They took Ellie into surgery about 40 minutes ago. It should only be a 2 to 3 hour surgery. Praying for successful surgery. Poor thing was so wrestles before surgery because she was in so much pain. They had to give her Morphine. This poor girl has so much going on. She was whipping her head from pain so much she has created these knots in her hair. It’s going to be a long process to get these knots out. On a positive note if anyone wants dread locks Ellie can show you the fastest way to get them. She has it down by now. Maybe she caught the Jamaica bug when she was there.
Ellie is out of surgery an she is looking amazing. Still no improvement on moving right side of body. She is really groggy, everything makes me nervous. Hoping that tomorrow we see some improvement. Said goodbye to nurse Katherine from Michigan as she is not working when we are expected to be moved out of ICU in the next few days and she won’t be working before that. She is #EllieStrong
Friday April 5th
Last night Ellie was up most of the night. I think her sleep schedule is all messed up.
This morning my mom had to get on a plane to head home. I was so sad to see her go. She giggled and said “I’m only going for two days I’ll be back Sunday.” She has been amazing through all of this and so much help. Ellie can’t sit in a chair yet or feed herself 100% yet so we need all hands on deck here. I am so blessed to have an amazing husband and mom that are both so much help.
I think its really hitting Ellie today that she is going to struggle daily to get herself somewhat back to normal. We have had doctors, specialists, and non stop tests since Ellie woke up this morning.
Speech therapy came in and did some testing and I think at that point Ellie realized exactly what she can and cannot do. At the end of testing the therapist had Ellie draw a photo of a boy she had seen earlier. Ellie started to get extremely agitated as she tried to draw the picture. Ellie has a passion for Art and for Music and its so frustrating to her that it comes to hard to her right now. It was obvious she was finished with the therapist at this point. She would not lay still and turned away and stopped to draw. She would not look at the therapist. At this point the Speech therapist decided that she was done for the day and would be back.
Saturday, April 6th
This morning was a big step in Ellie’s progress. She started to use her right arm to eat with little to no help. This was so incredibly nice to see considering that yesterday I did not notice any improvements and was feeling down.
We really need to get Ellie sitting up more so the doctors suggested putting her in a wheel chair
It took 3 people to get Ellie in a wheel chair but we did it. I have video but for my eyes only as she would kill me if I showed anyone. We took her for a walk around the ICU to give her a break from hospital bed for a bit. It takes allot to get her to walk around even for 5 minutes. They have to get Monitors all hooked up to travel around the floor even though its really not far from her room they need to be prepared if she heads down the wrong path again. She is now back in bed but her heart rate is spiking and it makes me wonder if we don’t have the shunt at the right levels. We turned shunt from .5 to 1.5 this afternoon basically higher the number less fluid drains. It is such a scary thing to have a shunt. Maybe its because I am new to this and hopefully I will become more immune to the idea. This is so heart breaking to watch Ellie struggle so much. They are keeping Ellie in ICU because they can’t figure out why her vessels keep contracting and it’s Concerning and they need to monitor her closely. I know god has a plan but wish he would fill me in on his plan because as of now I’m thinking we got the wrong plan. Ellie did FaceTime with some friends yesterday and it was first time I saw her smile all day. At same time it was heart breaking because she couldn’t come up with anything to talk about because her brain is still not functioning very well.
I spent about 3 hours today combing through Ellie’s hair trying to get dreadlocks out. I think I did a pretty good job if you look at the photos below. Although I ended up having to cut off a big chunk of her hair but it was underneath so you can’t notice. It was defiantly a labor of love. Everyone that saw it said I would probably have to cut it all off. But I wasn’t willing to do that to Ellie.
Sunday, April 7th
It was a big day. We started off by saying goodbye to Dad bright and early as he had to get back home and back to work. Also Jake needs him there too, as much as he is being taken care of he misses us very much. I know it was so difficult for Dave to say goodbye to us as he wants to be here helping out as much as he can. Dave and Ellie have a special bond and Ellie was sad to see him go. After Dave left our nurse Ashley had Ellie up in a chair. It was slightly difficult as I could not leave her side because she doesn’t have any core strength to hold her self up and her head would just fall. Ellie sat in a chair for about 3 hours. It was very challenging for her but she did it. She kept on asking if she could go back to bed. At one point I had to ask a nurse to sit with her so I could use the bathroom. As I went to the bathroom within those two minutes the other nurse told Ellie ok we can get back in bed a few minutes. I rushed out of the bathroom to let her know that wasn’t happening. Mean old mom again, or should I say the one that is pushing her because we need to get better. We don’t have an option. Our next goal was to get Ellie outside. There was discussion among the many doctors if Ellie would be released to go outside or not. Neuro Surgeon won and we got to go outside. My mom arrived just in time to take Ellie outside for the first time in 12 days. In the beginning Ellie could not hold her head up but by the end of our 10-minute stroll she was holding her head up and smiling and enjoying the nice Miami Weather. I guess if you have to be stuck somewhere at least the weather is nice here.
April 8th, Monday
Today has been a very busy day for us. Ellie began her day with a 6am MRI. The MRI was to check on how the shunt is doing so far. They think things look stable. Its concerning to me though because things also looked stable when the shunt malfunctioned. Ellie has been having neck and head pains all day today but she has been a trooper through it all. We are waiting for the Neuro Surgical team to make there rounds to discuss changing settings on her shunt to see if that helps with the pain. It unfortunately is a balancing act and there is no exact science to this whole shunt thing. 60% of Shunts malfunction. I have met several people in the ICU including a family that has had 12 Shunt Malfunctions and then there are people that live their whole lives with a shunt and never have a problem.
Today Ellie has had Occupational therapy, Physical therapy, and Speech therapy. PT got Ellie up and into a wheel chair that has head support. It was very exciting to us as It helped her feel more comfortable while working her core muscles. It was even more exciting that she stood up and pivoted her foot towards the chair. It took a few people to hold her but every little step is in the right direction. Its been a very busy day with all the doctors. Good news of the day is Ellie has been released from infectious disease. That’s one less doctor and one less medication she has to be on. Ellie had a feeding and swallowing study today and they determined that Ellie cannot drink regular liquids. She has lost her gag reflex and if the water goes down the wrong tube. If water goes down the wrong tube, then that can cause her to get Pneumonia.
We have to thicken her water or any drink she is drinking. They said it’s possible this could be temporary that it might be due to the loss of strength in her neck muscles.
Fast forward to late afternoon:
We had a visit from Pretzel a therapy dog. We also had a special visitor from another therapy dog Apollo. We gave Apollo a #Elliestrong bracelet and he so graciously took a photo with his legs crossed. It was so nice to see another therapy dog but at same time disappointing to see how down in the dumps Ellie is. She smiled a little but that was just for a photo. At one point she was not interested in the dog. Ellie had a sponge bath and her hair got washed today. Also the Neuro surgical team came around about 4pm and we are going to move the shunt setting so it drains a little more liquid to see if that helps with Ellie’s pain. They are going to watch her over night and try to get her off a few monitors and then hopefully release her to a regular Neurological floor tomorrow morning. That’s just one more step closer to getting home. I truly am enjoying the Neuro Surgeon team here but I miss ours back home. The Neuro Surgeon joked around yesterday about “no patients want my stickers, they always want the therapy dogs but not mine” I thought he was completely joking around and then today he took out his very own sticker that the nurses made him. I loved it.
I am constantly meeting with doctors, social workers, child life specialists, nurses, family services. As much as you think you have time just sitting around I often wonder where the time has gone in the day. Today I was able to take a ride to Wendy’s and pickup lunch. Its always nice to get a change of scenery. A few things I have learned about Miami since I have been here. You must be able to speak Spanish if you live here. English feels like the second language down here. Every where you go they speak Spanish to you and expect you to speak Spanish right back to them. Also traffic is horrible here. There is never enough time on the left turn arrow. If you can avoid left hand turns, then you get places much faster or you just go in circles. But the weather makes up for all of that. Ellie had a sponge bath and her hair got washed today. That was an exciting development as I’m sure she is feeling more refreshed. She just doesn’t really talk very much and seems really out of it. I pray everyday for some improvements and for my Ellie to be brought back to me. The spot she had her stroke in affects her right arm and right leg. Some people it affects your personality also. I am praying Ellie is not the part of some people. We did get her to sing to the Occupational therapist today and that was amazing to hear. I almost broke down in tears as it’s the first time I have heard her sing in weeks. It was a glimmer of the Ellie I know. Ellie is now resting comfortably.
Tuesday April 9th, 2019
Last night Ellie was up the entire night very restless. The doctors tried Melatonin, Benadryl, and even volume. Its so hard to watch her struggle.
I feel like we are taking one step forward and then two steps back. Ellie had a good day yesterday. But then was up all last night. She got melatonin, Benadryl,and Volume nothing worked she was thrashing her body around all night. Pulling off all the monitor wires. Very restless night for her. I’m drained. Ellie's sodium levels are really low and they cannot explain why her Sodium levels cannot get under control. They took down the IV fluids and we are doing our best to get Ellie to drink. We have to be careful because if she gets dehydrated she could have another stroke. When you have contracting vessels dehydration causes more issues. It is Day 11 in Miami and still in ICU, I am feeling down. We had a special surprise scheduled for her today as my sister Ellie’s aunt flew in to visit with Ellie. She could only come for less then 24 hours but it was so worth seeing Ellie’s smile when she came in. Grandma and Kelli worked very hard on therapy with Ellie including kicking.
Ellie still has no movement on right leg. But they sure did get that left leg working out. She is working hard every day and we are praying that with every new day brings brings new improvements but poor girl needs sleep and strength. Ellie saw three therapy dogs today and also worked hard for physical and occupational therapy. Since Aunt Kelli was here I get to go spend the night in a Hotel
I went to hotel while mom and Kelli stayed with Ellie. I slept really well but now I’m so tired and down. I miss home so much and just want to get back home. I don’t feel like I’m ever going to get home. We are Day 12 in ICU and Ellie is not stable enough to move to a floor. Ellie needs to be stable for 24 hours before they can move her to another floor. We said good bye to my sister Kelli Shoup and that was so hard because I was able to sit back and watch my sister and mom take care of Ellie for a bit. My MS is not having any of this. It’s been a busy morning with ultra sound of Ellie's bladder, Neuro Surgery Rounds, Neurology Rounds, ICU Doctor Rounds, physical therapy and occupational therapy. Ellie is still unable to sleep at night. They put her on a medication to relax her muscles although she was relaxed last night she didn’t sleep much so my mom and sister where up with her. Ellie forgets that she cannot stand and tries to stand on her own at night. I don’t know how much more this poor girl has to go through. It is just exhausting just to think of Managing Ellie's care at home with all of her current special needs. Breakfast of champions, BBQ chips (to help with Ellie's sodium), chocolate pudding boost, & cinnamon frapachino. Only Ellie love her.
The Social worker came in and told us the plan was to get our insurance to approve us to be medi-vacced and this should be happening in the morning. This was the best news I have gotten since I have been here. Even though they are just transferring her to another hospital it at least is close to my support team and back in Chicago with her doctors that are familiar with her.
Monday April 1st
Is this an April fools Joke? Ellie loves April Fools this would be a pretty extravigant and expensive April Fools Joke. Unfortunately its not, its our reality. I told Ellie we would celebrate May1st Fools day as she is missing one of her favorites.
Please keep Prayers going. Ellie was able to squeeze my moms hand with her left hand this morning. She is in MRI now.
They told us after MRI that Ellie not only had pressure buildup in the brain from shunt malfunction that she had a stroke due to thinning of arteries. They are guessing this is from the many years of chemotherapy. Doctors here along with doctors back home informed us that there was nothing we could of done to prevent it. Also there was no way they could have predicted this. My first reaction as a mom is “Did I do something wrong?” and it was nice to hear that this would of happened anywhere and could happen at any time. Ellie had a Echo Bubble Gram and will continue to do it to check the flow of the blood and her arteries. They plan on bringing her back in surgery this morning to put shunt in. Currently she has external drain from her head. They are concerned with open wound of an infection. Ellie was able to squeeze with her right hand which melted my heart as we where not getting any right side reactions at all. They think her hand will mostly come back they are unsure about her leg. Ellie is a fighter and we believe. We will begin heavy physical therapy, occupational therapy and speech therapy once they are able to remove the breathing tube.
Tuesday, April 2nd
Just talked to Neuro Surgery and no go on the surgery today. They need to figure out why she had a Stroke, shunt malfunction and seizure all during same time. She is going down for more tests. They see some bacteria in her tubing in lungs so goal is to get breathing tube out today and see if Ellie can talk. Fingers and toes are double crossed and constantly praying. She is such a warrier. She has a pick line and is now having a 3rd IV put in. She is like a pin cushion right now. So proud of how brave and strong she is being. She has been awake eyes open today.
Ellie has a ICU (doctor, fellow & nurse practitioner), she has 3 neuro surgeons, 2 neuro nurse practitioners, along with neuro fellows, she also has been seeing a Neuro Oncologist, infectious Disease doctor and nurse practitioner, Neurologist fellow and doctor. I’m trying to think who else is working with her here. Oh she has a one on one nurse that does not stop working. She has a list of things she has to do including suctioning Ellies throat, checking all Ellies IVs and Picu line, stop, drain, and measure brain fluids, Nasal tube drain, check and drain catheter, administer medication, check Ellies vitals, check her eyes, etc. the nurse doesn’t stop.
This is right after tubes where taken out but soon after they had to put nasal tube back in.
They took out some of the tubes including breathing tube later in the day. This gives the nurse a little break. Ellie has not talked to us yet. She seems very frustrated that she can’t move one side of her body and very confused. She won’t even look at me. She did smile when Face Timing with my sister and brother in law. Ellie has a staff infection now to add to all her other issues. They are not sure where or when she picked it up. I’m extremely drained emotionally and physically. The cafeteria is really far so the staff got me a wheel chair as my MS is acting up. I was able to get a massage in the family center downstairs for 20 minutes today from volunteer. Ellie is not able to swallow so we where kicked out of room and they are placing some tubing back in her. Poor thing, this just isn’t fair. We saw occupational therapy today. We will see feeding and swallowing expert tomorrow along with physical therapy. Ellie is so hungry my heart is breaking for her. She already is so skinny I cannot imagine her dropping even another pound.
Saturday, March 30th
We got into a room around 7am and my mom arrived shortly after this. I felt extremely happy and relieved to see my mom. Even a 41 year old still needs her mom. I was able to get some rest while my mom stayed up with Ellie. My mom went to Walmart to get some necessities for the week. It took 4 hours because the traffic is horrible here in Miami and also like my mom said Walmart on a Saturday in Miami is like Disney World on a Saturday. It is crazy how here in Miami its so different then the rest of Florida. Everyone here speaks Spanish and expects you to speak Spanish. If you don’t speak Spanish they look at you like you have two heads. The nurses and doctors also agree that Miami is a whole different world. We had a nice visit from my Uncle Terry for a few hours in the afternoon and my other Uncle Barry and Aunt Jerry came to visit us from the Keys but unfortunately it was a very short visit because Ellie’s pain escalated so fast and she was miserable. My mom and I laid down for the night to sleep and I guess in the middle of the night Ellie woke up and had a seizure again. This time for over an hour. She kept on moving her one side of her body like she was riding a bicycle and her arm kept coming up and hitting herself. In true fashion I slept through all of this. My mom was up with her. I think the comfort of having my mom here took over for me and my body knew it was time to rest.
Sunday March 31st
I woke up to a sedated Ellie and it scared me at first and then my mom explained about Ellie’s seizure and that they had to sedate her. Soon after this Ellie’s stats started to drop and they decided it was best to move her to ICU. We quickily packed up the room and headed to ICU. When we got down to ICU everything went very quickily. They had every kind of doctor, resdents, and nurses all hands where on deck. They asked us to leave the room because Ellie was unresponsive and they had to put a breathing tube in her. My mom and I where crying and so upset because it did not look good. I just wanted to talk to her again. My heart was breaking. I quickily contact Dave and told him he had to fly to Miami from Texas. He was suppose to drive the car back but the rest of the family was getting off the cruise boat today and they where driving the car back for us. The doctors checked her MRI and her ventricles looked stable which is the sign that her shunt is working and that wasn’t the problem. Next step was tap the shunt then to drop her shunt number and drain quickily and see if the pressure of the shunt changed after 30 minutes. When they went to tap the shunt again they saw that there was no difference in the pressure. At this point they said her shunt was malfunctioning and she had to go into surgery to remove the shunt. The plan was to take the shunt out and have an external drain placed so they could see the drainage of the fluid in the brain and monitor it. They don’t believe that the shunt is the only problem. We could tell this was just the beginning and we had a long road ahead. I just want god to bring my baby back to me. I just want to talk to her again.
I am so thankful for everyone that has wrapped there arms around my family. Thank you to everyone back home taking care of my house, my son, and all other logistics. This girl is a fighter and she will conquer this too.
I am 13 days behind on blogging so please bare with me. I will try and do 2-4 days at a time till I catchup. So here it begins...
Thursday March 28th our worst nightmare began. As I write this it seams so unreal and sounds like something in a fiction (horror) book. Ok maybe not Horror but Horrifying for any parent. Maybe just a drama for others.
As a family we had a Cruise planned for spring break. It had been planned and paid for over a year now. Doctors told us they felt like Ellie was good to go on the cruise so we went happily. Her doctors explained that there is something to be said for the medicine of a vacation. They did express that they could not fully guarantee that everything was going to be perfect but that they felt she would be ok.
Ellie did have some good times although she was tired and just not 100% herself. During the cruise there were glimmers of Ellie shinning through. She perked up every time she saw a DreamWorks character or got to meet the cast of the production. I want to take a moment to thank Julie Hadjioannou for contacting the cruise line so they made it special for Ellie. All and all Ellie just was not feeling good, kind of like she has been feeling since her brain resection surgery on January 22nd. We were able to bring her gown that she was suppose to wear in the St. Patrick’s day parade. We even got photos with her crown and sash. Back in early march it fit perfectly and sadly it was extremely loose because of all the weight loss she has had.
All and all as the week went on Ellie became more and more weak and tired. Me being a mom I worked very hard to keep pushing Ellie to move. My thought process was that the more you move the more energy you have. I felt that she was just weak from laying around.
Thursday, March 28th
On Thursday March 28thwe docked in Jamaica. Ellie did not have any energy or desire to leave the ship. I forced her to get off the ship and shop around just in the port area with us. We where outside for maybe an hour at the most and she could not sit up and was miserable. She kept on laying on the benches, at one point I brought her to an actual chair and had her sit there thinking she would feel better sitting up. Where there is a will there is a way with Ellie. I looked over at her and She figured out that if she put two chairs together she could laydown. At that point I decided it was time to get back on the ship. But I wasn’t giving up on her staying awake. She wanted to sleep in the room but I made her go out by the pool where the rest of the family had gathered and had her lay on a lounge chair. My sister and sister-in-law along with there families where all by her. Dave and I decided to walk inside and get lunch while Ellie hung out with them. Ellie had no desire to eat and kept complaining of neck pain.
As Dave and I where finishing up lunch my sister came to get us and told me that we really needed to come see Ellie that she doesn’t seem to be doing very well. Apparently they tried to move her because the sun was coming out and they wanted to get her in the shade and she started to fight them about moving. By the time Dave and I got out by the pool where Ellie was. There was a huge crowd gathered around Ellie along with the Deck supervisors and other workers. Ellie was having what looked like a seizure. She had never had a seizure before. Her body was stiff and she had a blank stare to the upper right of her eye Sclera. She was un responsive and there was mass hysteria as my sister was crying along with myself, they where calling the medics and my sister in law was demanding medics right away. Everything felt like it was moving in slow motion around us as the crowd around us grew larger. A very kind Doctor that was vacationing came over to assist and jump in to help until the medical team could arrive. Her and my sister-in-law jumped into action and where cool calm and collective. Me sitting next to her what was 5 minutes felt like an eternity. I was a hysterical mess the medical team arrived and rushed her strait down to the medical unit. I was completely surprised by the technology and what they had on the ship. They had her on an IV before I could fill out the paperwork and had already sent her blood for labs. She was resting comfortably as they did a bunch of tests and received the Ellie’s back history. Ellie finally was speaking to us but she was extremely drowsy and out of it.
Before long they informed me that we would have to transfer to the local hospital to get Ellie a cat scan. Once Ellie was cleared she would be able to get back on the ship as long as it was before 6pm. They took us to our room and helped us pack a bag just in case. We where then rushed by ambulance to the Hospital which was about 20 minutes from port. It was about 1:30pm when we left for the hospital.
I would have to say it was one of the most interesting rides to the hospital. First off as I got into the Ambulance I noticed that the control panel looked all broken along with the seats all ripped. The engine sounded very old like it was going to break down. Dave teased that the “Cool Runnings” Jamaican bob sled team took us to the hospital. I sat in the front seat, BIG MISTAKE. The entire ride I was deep breathing to keep me from going into an anxiety attack. The comical guy “Sanka” from the movie cool Runnings was driving. And if you have not seen the movie he was driving like Sanka drove in the pushcart race.
He played chicken with semi’s he only turned on the siren once in a while. No one moves in Jamaica for an Ambulance. The ambulance team even resembled the Jamaican bob sled team from the movie. “Sanka” or our driver looked like he just shaved his dread locks.
In all seriousness as we drove and I looked around at how poverty stricken the country was and dilapidated the houses where, I got more nervous. I wasn’t sure what we where about to encounter when we arrived at the hospital. When we arrived at the hospital it looked like a new building and this gave me some relief as it looked new and clean. It was probably the size if not smaller then an urgent care center here in the united states. They put us in one of the 4 ER rooms. Ellie was still hooked up to the IV. The doctor came in and we soon found out that they had a “a Mon, everything is going to be alright." No worries” attitude. I was loosing my mind after two hours of being in the ER and doctor would not call Neuro surgeon. I kept on asking and he kept on giving me the run around. So I spent most of my time communicating with my mom as she was speaking with the doctors back home. Ellie’s Neuro Surgeon said if Ellie can walk and is conscious to get her out of the hospital and get on a plane back home. So after my husband paid a fee of $3800 so they would treat Ellie in the first place I went to the doctor and said we are leaving. I told him “there doesn’t seem to be a sense of urgency here and we need to leave.” He then explained “oh well we where waiting for your payment before we did anything” I then explained that we paid over an hour ago and nothing was happening. I asked him point blank “Do you have access to check her shunt?”
His answer “I’m not sure, that is a question for the Neuro Surgeon”
I began loosing it, which is unusual for me to loose my cool on any medical profession “Well you have not called the Neuro Surgeon the whole time we have been here so I am assuming you do not have the ability to check her shunt. We want to discharge her now” We got a refund for some of the money and they took out Ellie’s IV and we where finally going to leave. I felt a sense of relief as I just wanted to get Ellie back to the states. I got Ellie dressed out of her gown and into clothes. We where just waiting for the wheel chair to take us out.
But before we walked out of the ER, the shift had changed and a new doctor came on for the night. He informed me that if we arrive at the airport they will turn us around and send us right back if they feel she is not fit to fly. He said this happens all the time and that if Ellie began another seizure there is a possibility she might not come out of it. I was lost what do we do? Once again as parents we needed to make a decision. The pressure of making a decision like this as a mother is nearly impossible. A nurse came in and said “have you thought about being medi vacced, out of Jamaica. She told us to talk to our insurance” so at that point we decided that it sounded like a safer option. Our insurance does not cover the charges in Jamaica or the medi vac. We fortunately bought a secondary travel insurance we where told they did not accept our insurance. It didn’t matter because our main focus was not money it was getting Ellie back to the states where the medical care is so much better. Her life is more important than money.
Once we made the decision that we would attempt the medi-vac we would have to be readmitted. They informed us that this time we would have to pay $5000.00 in order for them to admit her. Then we started over with the admitting process. Now that they took out the IV from the cruise ship they had to put another IV in. This was a very interesting experience for me they decided to do blood work again even though the cruise ship already did bloodwork. So they took the IV tube and just squeezed blood into an open tube. It was extremely odd and unsettling to watch. They had two nurses holding Ellie up to get her weight. The scale was an old fashioned weighted scale. I took as many photos as I could because it was so surprising to me. It made me appreciate what our medical care is in the States. If Ellie lived there when she was first diagnosed she would be dead now. They then informed me that the medivac team was not coming
This hospital was a learning experience for sure. They only had two nurses and one doctor in ER, 3 nurses on floor rooms and doctors on call. They had a total of about 30 rooms in the hospital and two floors. First floor was ER and lobby; second floor was the 30 rooms. The hospital room looked like
The only thing they could do is have her on an IV with fluids. Now they took the ships IV out and Ellie would have to get another IV. But before treatment we would have to go pay another fee. This time they wanted $5000.00 for admission and treatment. Once again Dave and I whip out the credit card and just pray that she gets medivac team gets there soon. Because our travel insurance could possibly pay for the medivac we had to go through them to set everything up. I thought we where set and ready to get out that night. The nurse put Ellie’s IV in and I watched so carefully and I flabbergasted at there practices. They squeezed blood from her IV into a tube. It just did not seem like a very sanitary practice. At this point I was hysterical and ready to jump out of my skin. I even took a photo because it was so hard to believe this was happening. Ellie had to go to the bathroom so they took the IV bag threw it on her lap in a wheel chair and took her to the bathroom. I went in and held the IV bag while she went to the bathroom. Every inch of my body wanted to get out of this hospital. I just kept telling Dave this is my worst nightmare. They then decide they where going to admit us to a room once again they asked for more money. I wanted to grab Ellie and run. I kept on reminding myself we are getting out of here tonight.
I will say the hospital was clean and the rooms where like a hotel. They gave me a pair of slippers and a bag of hygienic needs. This is about where the quality of care ended. I was informed that Ellie was not going to be medivaced till morning and we should settle in the room. Dave was not aloud to stay over night in the hospital with us and had to go to a local hotel for the night while I slept on the coach next to Ellie. About 10:30 in the evening we finally saw a pediatric doctor. Still no Neuro Surgeon as I requested over and over. To this day we never saw a Nuero Surgeon and per there website they had one on staff but I question if this is even correct.
Friday, March 29th
We woke up and nothing had seemed to change with Ellie. The Travel insurance company contacted me and said they had been trying to get in touch with the Doctor at the Hospital in order to arrange the Medivac and felt like they where getting the run around. They said the plan was to get Ellie out of Jamaica this morning but they did not have room on the plane for Dave and they where unsure where we where going to be taken yet. So we immediately booked a flight for Dave back to Texas so he could meet up with the rest of the family including Jake and drive our car back home. While I stayed with Ellie and cared for her. Dave had to say goodbye to us around 11:30am to get to his flight. I cannot imagine what was going on in his head. It had to be killing him that he had to leave us in a foreign country without final plans being made. There are no Doctors in the Hospital they where just on call. The doctor that came in last night called me on the phone first thing in the morning and told me that when the insurance calls, the hospital will connect her to the travel insurance company. Nothing could be setup without the Doctor speaking with the medical team with the insurance company. But once again the Travel Insurance called around 12noon and once again they said they would not connect them to the Doctor in order to get the Medivac all finalized. Then the Doctor came in right as I was on the phone and I handed the phone directly to her so that she could speak directly to them. I started to think that we where never going to leave Jamaica. The insurance company contacted me around 4pm and informed me the medivac team would be there at 6pm to get us. I felt such a sense of relief. But at same time I got extremely nervous because they informed me that they still did not know where we where being transported to and if there was room on the plane for me. At this point there where no more flights out of Jamaica and I just imagined my baby being transported to a hospital and no one being there for her. Luckily they called around 5pm and confirmed I could right on the plan with her. The cashier as they like to call them in this hospital came up and told me I had to pay them another $1800 in order for them to release her. So once again I whipped out my credit card. Between ambulance ride and this stay we where well over $5000. The care did not matchup to the cost in my eyes. But at this point I would pay anything to get her out of this hospital and somewhere safe.
Funny side note:
There was a representative from the ship that stayed with us in Jamaica and was there as long as we where there to. This was nice to have another person with us. She was quite nice young Philippine girl. This was her first time on the Job even though she had been working on the ship for 6 months. She sat at the hospital the entire time we where there. I cannot imagine how bored she was. Dave told me her name was Marissa so when I had to go downstairs once Dave had left I would ask Marissa to sit with Ellie and she wouldn’t respond. I was really confused until she told me her name was not Marissa it was Maria. Yes, that’s Dave’s listening skills for you. So for Thursday and now Friday I was calling her a completely different name. She told me she thought I was talking to Ellie every time I said Marissa.
6pm arrived and so did the air transport. They where going to fly us to Ft. Lauderdale and then take us by ambulance 45 minutes to Nicklaus children’s hospital in Miami. We had to get back in the ambulance with the Jamaican bob sled team to make it to the airport. The sunset was beautiful. My first and hopefully last private plane experience is what I was thinking the entire flight to Ft. Lauderdale. Ellie spent the entire plane ride tossing and turning. She kept on whipping her head all around. She was so uncomfortable. By the time we arrived at Nicklaus Children’s hospital in Miami it was 11:30pm. They wanted to do a cat scan but couldn’t get her to sit still. They wanted to avoid sedation because they wanted a clear read on what was going on with her. They didn’t want to mask her discomfort with medicine until they had a handle on what was going on. They also informed me that we would not be put into a room until she had the cat scan. I was so appreciative for the coffee outside. As soon as my mom heard what hospital we where going to she hopped on a plane and was in ft. Lauderdale by 11:30 she decided to spend the night at a hotel before making the 45-minute drive as she was exhausted. About 5:30am the charge nurse came and and Ellie had finally fell asleep and wasn’t thrashing her head everywhere. So the Nurse took this as an opportunity to get a cat scan. We transported Ellie as quietly as possible in hopes to get the pictures we needed. We very carefully moved her onto the table for the photos and finally got the photos. I was so relieved because I had been up all night (thank god for the coffee bar) and I was picturing getting up in a room and hopefully relaxing. They finally had a room for us upstairs at 7am. I was just hoping for some rest because I was now up the entire night……….
It has been really difficult to keep up with the blog these past few weeks as Ellie has been through hell and back. I will do my best to update the blog on a daily basis but I think it will be unfortunately one or two days of blogging at a time starting back when the drama all started. Stay tuned I am almost done with Day one and Day two of blogging. If you want quick Updates see Elliestrong Facebook page. You will see a photo of the green bracelets as profile pictures. Thank you everyone for your love and support. Ellie is still in hospital in Miami until further notice. I have a goal to get caught up as I am loosing time.
Sorry I have not blogged in a while. Its has been a crazy busy week with Doctors and caring for Ellie as its been a rough recovery again. I am so grateful that Jake has been doing amazing in school all on his own. Also grateful for my Friend Tracy that has been quizzing him while driving him to Lacrosse Practice for the constitution test. Ellie this week has been tired and still vomiting but only once a day at the most. Which is improvement but still hard to see. Since her shunt was put in she has not been able to walk strait and her balance has been a little off. Friday night she had Lemont’s Got Talent at the High School. For those that did not get to attend make sure you get tickets next year because it was such an entertaining fun night. Ellie walked on stage and as she started to sing I saw her arms shake and I think I might have held my breathe the entire time she was on stage. At one point I looked over and my grandma and my sister where in tears hugging. I didn’t have the chance to loose it during her performance because I was so incredibly nervous that she was shaking and I just wanted her to be able to get through the song. It almost looked like she was using the microphone stand to hold herself up.. Ellie won the Lemont’s Got Talent competition. Ellie originally said she didn’t want to do it because she didn’t want sympathy votes and wanted to be judged fairly. Ellie was amazing but so where many other acts so I cannot tell you if Ellie won because Ellie is a super star in Lemont or based off her pure talent. What I do know is that on all the Talent shows there is always a popularity factor and people vote for the ones they love along with there talent. Ellie was so excited to win and in my heart she deserved to win. She killed it considering a week earlier she had Brain Surgery and is not back to herself and has parolization in the one side of her face still and a severe hearing loss since surgery. I wanted to thank Nancy Urban her Vocal Coach for coming out and playing piano and for being so amazing with Ellie. I feel very blessed to have her in our lives.
Once the show was over we met with Ellie and Nancy said she was feeling dizzy. Ellie said the lights made her dizzy. I guess we probably should have held out before pushing Ellie to do anything but honestly the trophy and being crowned Lemont’s Got Talent was the most amazing feeling for her and she truly needed that. I was so proud of her, she was so brave. It was a great night for sure. Thank you for everyone that came out and supported Ellie.
My favorite part of the night was these three girls sitting in front of me about 6 or 7 years old and they where decked out in Green. After Ellie was done the one girl turned and said something like “How did that make you feel” it was so sweet. Then the girls asked if they could move in with Ellie and I. I thought for a minute and said “no, but Ellie can move in with you” These girls where amazing they look up to Ellie like she is a super star. I think they might be Ellie’s biggest fans. They even took photos with Ellie after. They where such sweet girls.
Since Friday Ellie has been laying around allot not feeling well. We did get her to my Step-Sisters house for a night of fun and that was great. I feel like Ellie is probably bored with me since I have been with her almost 24/7 for two months now. I feel like I’m old news and anyone new that does something with her she seems to have more energy for. Glad she was able to get out a little bit but it did wear her out and she slept most of Sunday.
Today we went down town to Lurie’s for a MRV test. Ellie started a new medication today and it seemed to wake her up a little more. I have prayers that we just keep moving in the right direction. Tomorrow we meet with Ellie’s Neuro Surgery and Neuro Oncologist for results of the MRV and a checkup. I’m sorry I have not blogged like I said its been so busy around here. Hoping for things to slow down a little. Thank you for everyone’s love and support. Today I went and got a coffee in Homer Glen and the guy working there was wearing a green bracelet. Its so cool to see the green everywhere. I hope we can keep spreading the word #EllieStrong as we start Radiation on April 1stwe will need all the love and support we can get.
We were released Saturday but after several drama filled days why wouldn’t this day be any different. We saw Dr. Dipatri nice and early and he gave us the thumbs up to go home on a new medication to help with the Nausea. Ellie pepped up a little when he said we could go home. Ellie then Ellie threw up a little but they still felt comfortable to sending us home because she was eating and drinking fine. Her head is still getting used to the shunt and her brain is settling down. But when the nurse came in with the discharge paperwork and to take her IV out Ellie took a turn and started complaining of pain. So we decided to hold off on going home until she was comfortable. Which meant no St. Patrick’s day parade. It was probably for the best but still disappointing. From all the photos and from what I have been told Ellie was well represented in the parade. I cannot thank the town of Lemont for taking her under there wings and making her feel so special. My family along with Jake marched in the parade in honor of my sweet girl. Once Ellie’s pain was under control around 6pm we where released to go home.
We spent the night relaxing and enjoying family time. Sunday, I went to a St. Baldrick’s event. I was invited to several this weekend but I had already made commitments to the one in Frankfort earlier. Unfortunately splitting myself into two is just not an option, although it would make my life al little easier if I could. Jake shaved his head at the St. Baldrick’s Event in honor of his sister. While I was not home I was wondering the entire day how Ellie was doing at home with Dave. When I got home Ellie was laying around. Her Grandma & Papa took her for a very short walk and it wore her out. We had plans to go to my sisters and celebrate our Bithdays. It was the first time I saw Ellie with an appetite in days. It was nice to have the family back together. Unfortunately, Jake did not do so well as he was emotionally struggling from the past week. He struggles with the idea that his sister is not doing anything around the house and that he has chores. Sometimes Jake masks his feeling and thinks he is upset about one thing but in reality he is struggling with something completely different. When we got home we talked for a bit and realized he is just really worried about Ellie as she is just laying around, not feeling good, and not herself. Cancer not only is hard on the person going through it but it makes it really hard to be a family unit as you are pulled in several directions.
This morning we woke up bright and early to bring Ellie for her Proton Beam mask/neck fitting and consultation. Before we left the house Ellie started vomiting again. Everytime I feel like we take a turn for the better we get brought back down to what feels like our new reality. Ellie then continued to vomit on the way to the Proton Beam center. When we arrived we checked in and I noticed the worker had an #Elliestrong Bracelet. And it surprised me and she informed me that a bunch of the nurses and workers have them on. It gave a boost of feeling of comfort. We then met with the child specialist to speak about the procedure. Everyone was so nice. Ellie didn’t have the energy to lift her head. She is so weak its hard to see Ellie weak as before all of this she was so athletic and strong. I know we will get to that point again I just wish it was a faster process. I need to take my own advice that I give Ellie not to rush recovery that it takes time.
Tomorrow is Audiology and we get to see if Ellie’s hearing has improved at all. Praying for improvement on her hearing. The Proton Beam Radiation will affect her hearing also but I am hoping for the best. She does a pretty good job compensating for the most part. There are several times she hears nothing when you are talking if you are on her bad side. Just another learning curve until her treatment is finished and we can figure out what her new hearing baseline is going to be.
St Patrick's Day Parade..
Going Home Finally...
Proton Beam Mask Fitting..
Thursday after work Dave came by to visit with Ellie for a bit. She is a total Daddy’s girls. At one point Ellie fell asleep and Dave went to get dinner for us. She woke up while he was gone and was concerned that he left without saying good bye. She said “Make sure you wake me to say goodbye to Dad before he heads home please.” I was so happy and my heart was full having him here even for just one night. He has been pulled in so many directions juggling work, Jake and the hospital. Ellie was really lethargic and just in so much pain yesterday. She kept on vomiting and could not keep anything down. They put her back onto the IV for fluids. They reprogramed her shunt hoping this would do the trick.
Fast forward to this morning….
So today went pretty smoothly. I was woken up by a message by the person who plays George Washington in the Hamilton play with a very nice message and a video of the entire cast. I was so excited and couldn’t wait to show Ellie but she did allot of sleeping this morning. My mom showed Ellie while I was gone and Ellie was excited but I think she will be even more excited once she sees Hamilton. I left for home early this afternoon while my mom sat with Ellie so I could get a shower and more clothes. Ellie facetimed with her dogs while I was home. The dogs where so excited but confused as they kept hearing her voice and could not figure out where she was at. It was very cute and it gave Ellie some joy. She loves dogs so much and especially her dogs.
When I got back my mom told me Ellie had been up walking not really eating much. Once I got back I started pushing the fluids. Luckily Ellie was hungry and was eating lots of crackers. That is all she has eaten all day. This evening I was able to get her to eat two breadsticks. She has kept everything down today and has not thrown up. She is still uncomfortable when laying down but she is night and day from yesterday. She even had enough energy to played cards with me and kicked my butt in Connect 4. We did work her hard today so she was exhausted this evening and went to bed early. We are trying to stay in front of the pain with meds. Dr. Dipatri and the team came in around 6pm to let us know that we will be spending the night but they will be in at 7am and if all remains the same they will release us in the morning and Ellie would be able to go to the Parade. As of now we are not holding our breathe because Ellie has had good days and then woke up the next day super sick. Lots of prayers and fingers crossed that we get to go home tomorrow and Ellie is feeling good. So for now the plan is to wake Ellie up at 6am try to get her out of bed and see how she feels. It should be interesting waking her so early as she has not been up early since her before her January surgery. Dave is going to head down to help out tomorrow morning. Ellie has lost allot of weight and strength so we will need to work on her stamina and strength once home, but for now we are going to focus on the positive that there is a possibility we could go home tomorrow.
Tomorrow the Parade and festivities start at 1pm in Downtown Lemont.Bracelets and 50/50 raffle at Hughie McClafferty’s Beer Tent in support of Ellie in Downtown Lemont Tomorrow from 11-2pm. I hope everyone comes out for a good time in Lemont. If you have yet to be to this Irish Pub you should try it. I was there once before Ellie had surgery and it was fantastic.
Since I have an early morning I will be going to bed. I hope to see a sea of #Elliestrong green in the crowds at the parade tomorrow. Thank You
Thursday Night Visit with Dad..
A mother with a battle ahead of her.