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..
Yesterday was probably the most up and down day so far. I was on the edge of my seat waiting to hear if Ellie would be able to go home. Ellie started the day slow and not feeling well. She did some vomiting after eating a little cereal. The Neuro Surgery Team did a catscan and decided to readjust her shunt. Last night about 5pm we got word that they where keeping Ellie another night. Although it was devastating to hear that Ellie was not going to Hamilton you know it was the best decision when she agreed. Ellie told the Doctor “She wanted to do what was best for her health” I am so grateful she made a very mature decision. She hadn’t felt well all day so I know it was for the best but my heart was breaking that she wasn’t going. We already purchased the tickets so Myself, my mom, Sister, and her family where still going to go while my stepdad was going to skip and sit with Ellie in the hospital. The money we loss on Ellie’s Ticket was the farthest from my mind I was just hoping that I would be able to even enjoy it knowing Ellie was not by my side and this was for her. My heart was heavy because there was a limo setup, a nice dinner, the Play, and going onstage after to meet the cast, this was all for Ellie and she was not feeling up to nor could come to enjoy this.
I was extremely grateful that my sister bought tickets for herself, my brother in law and nephews to go along. They made the night enjoyable for me. They had never road in a Limo so seeing them so happy made me happy for the evening. I wanted to thank Liz Tomala and her daughters Girl Scout troop for providing the limo, it was fantastic. It gave me such great pleasure in seeing the joy on my nephews faces. My nephews are like brothers to Ellie and this has been a huge struggle on them emotionally also. Jake had no desire at all to see Hamilton so we left him and my niece Kaylin at home with Dave. Dave took them to do something super fun instead. They got to go to Dave and Busters and Jake was very happy with that. So grateful that Dave and I have become so good at dividing and conquering. He handles the home front and Jake while I handle the hospital and Ellie. Although this is awesome Jake does not handle change very well as he has sensory integration and any change in his daily life sometimes throws him off. I was able to spend a couple minutes with him yesterday and he seemed sad but when I told him he was going to Dave and Busters he got excited.
My mind is wandering so I am going back to Hamilton. I was super concerned during dinner that I would not be able to enjoy it and I would be spending the night thinking of Ellie or worse sleeping through the play because I was so mentally and physically exhausted. My mom sent us a text during dinner that Ellie had a visit from Larry the therapy dog and was super excited to see him. This gave me a little more sense of piece that she was happy and she wouldn’t want to miss seeing Larry. Also during dinner our connection to get on stage informed me that he would still leave us on the list along with my sister’s family. The excitement from the boys really brought my spirits up. So after dinner we needed to do a swap at the hospital, Papa for Grandma as my mom was with her during dinner and then my step-dad was going to sit with her during the play. It was so fun pulling up to the hospital in a limo. I’m pretty sure people where wondering who we where pulling up.
We got to Hamilton and you can feel the excitement building in the theater. The lights went down and then the musical started. I could not take my eyes off the stage as it was so intergang and so good. Can I just say Hamilton was the most amazing musical I have ever seen? I cannot wait to bring Ellie back when she is feeling up for it. I know she will LOVE it when she gets to go. What was a three-hour musical felt like it was over in an hour it was so good? After the play finished we went on stage and got to meet Miguel Hamilton Himself. How incredibly humble and kind he was. We also got to spend time talking to the drummer for the show and met a base player. They where all so amazingly kind. We gave them all Elliestrong bracelets and took photos. I wanted to thank everyone that made this possible. I want to give a shout out but I know they do not want recognition so you know who you are that made this possible Thank You for your help.
At the end of the night we had to go back to the hospital again in the limo. This time I was being dropped off at the ER entrance around 11:30pm and we where picking up my step-dad. Once again I wanted to thank Liz Tomala and the girl scout troop for arranging our ride. It was so helpful to be picked up and dropped off at the door and being able to do the shuffling of our family to stay at the hospital. When I got the room Ellie was resting soundly she didn’t even look up as I entered and moved around. Hannah our night nurse was telling me how cute Ellie and her Papa where. She said they walked the hall holding hands and talking. I was so grateful that he stayed with her while I was out and about. I was also told that the doctors felt we would be released this morning.
Well in true Cuiching fashion we like to cause drama. And the Drama is always saved for the Mama. This morning Ellie would not really wake up. Once we got her up she was crying in pain which is not like her again. She started to vomit and has not stopped since. She can’t keep anything down. We tried to get her to a chair for a bit but she was in just too much pain and kept vomiting. They took her down to catscan and again she started to vomit in the machine. I am so worried about her she feels so much better laying down and we are praying the doctors can figure this out. For now, I’m pretty sure she will be staying the night. We just re hooked her up to the fluids to help her get hydrated. We are waiting for approval for some Zofran to help her with her nausea.
I was talking to the charge nurse and telling her Ellie is supposing to be the princess on Saturdays parade and she told me she thinks we will be able to figure this out and she will make the parade but as we have learned this week nothing is a guarantee so we wait and see how she is doing. I wanted to give a huge shout out to my sister who got us an amazing massage chair for at home for both Ellie and I. I got to sit in it for a bit when I went home yesterday and I didn't want to leave it. Even though we have not really been home Thank you, thank you, thank you for all the love and support you have given Ellie and our family.
For now we wait, pray and hope that Ellie Kicks Ass.
Hamilton Night minus the Ellie.
Yesterday Ellie had a busy day. Ellie ate a huge lunch; it was really excited to see her appetite back. Because I was so excited I didn’t slow he down or stop her. We then got up for a body shower. Still can’t wash hair but she is doing a great job sporting an eighties high pony tail. During our shower the ophthalmologist popped in and so I had to quickly get her out and dress her, got her back in bed. While the Ophthalmologist was doing his exam Ellie began to vomit. She vomited her entire lunch. Then I realized I should have slowed her down so I felt bad for not slowing her down. I was actually surprised by the Ophthalmologists reaction. This obviously is the first time he saw vomit from a kid up front. He couldn’t get out of the room fast enough. He was like ok we are good no tape during the day anymore, bye. So out of all that the most exciting news that Ellie doesn’t have to keep her eye taped all day, only when she is sleeping.
Then she rested a bit and we ate a much smaller dinner. Ellie even got up and did her walk. As we walked past the nurses station I told Ellie
“slow down I can’t keep up with you”
She told “Don’t worry mom I got this”
Then I said “I know you got this, but I don’t. I can’t keep up”
All the nurses where laughing at us.
Ellie sat in a chair for a long period of time.
Ellie had the nurses cracking up with her smart remarks all night.
We also had a visit from a magic group that showed Ellie some magic tricks and it was awesome seeing her facial reactions as she was shocked and didn’t know how they did the tricks. Before they left they showed her a card trick to do for her cousins and brother and left her with a deck of cards. It was so nice to see her in great spirits.
We also got to watch the live feed of the Allegro Ellie Benefit. Chanel 9 news was there so if you see the EllieStrong Benefit on the news let me know. I cannot thank the Kids from Allegro and Lori Gardner for putting together the show. My family went to support the show while we Sat in the hospital. My nephew filled in for Ellie and I must say he had me in tears during his performance, especially the second. The kids created the show and I felt did an amazing job. You can see the feed of the first show on Elliestrong facebook page.
At the same time Ellie was being honored and awarded a check at a Action Sertoma foundation on Southside. So luckily my dad was able to attend that for me. I am so blessed to have so much love and support. I cannot thank them enough along with all the people out there that have stood by us through this and have shown us that we are not alone in this fight.
Ellie slept ok she said it was hard to get comfortable. This morning the Neuro Team came in and told us if she gets up eats and walks they didn’t see why we could be out of here by 12noon. Then they left Ellie woke up and complained about head pain the most she has had yet. Dr. Dapatri came in and we now are going to get a scan and see what is happening. So for now I am waiting for my Mom to get down here, I am going to hop in the car while she sits with Ellie I will go home and get ready just in case we are stuck here until just before the show. I need lots of prayers that everything is good and we break out of here early enough. I figured if I get in my car and go home to get ready then she will be released. That’s how life works right. This has been a roller coaster of emotions. Just waiting for the adrenaline to stop and my MS to kick in again. For now, we are grateful that a glimmer of my Ellie is back she has energy and is a crazy speed walker. It warms my heart because it reminds me of both of my grandmas when I see her walk so fast. My Grandmas therapist in rehab said my grandma is walking too fast and loosing her balance. So for now we wait. We wait for Ellie to wake up, get a scan, Eat, & Walk.
BTW I did get to visit my favorite place in the hospital and the busiest morning place. I got me some of my favorite Ice coffee to get me through the day. I took a photo but I don’t think you can get the idea from this photo how incredibly busy this DD is.
I am praying so hard because we have Hamilton Tonight.
What a world win of a day/night. Yesterday Ellie hit an all time high of lethargic. She woke up again and threw up. It has been so exhausting watching my daughter disappear as her health has dwindled. She has lost so much weight from the lack of eating and the extreme vomiting. It was so concerning yesterday as I watched her leggings that use to cling to her legs look loose. Watching her walk she was so weak. We contacted Ellie’s surgical team and they told us to come down to the ER. My anxiety was through the roof being so concerned about Ellie. I just did not see an end in sight, was this our new normal? Ellie not having enough energy to do anything. She has only had enough energy to do maybe an hour of laying and watching TV at a time. She sleeps till 12noon only to get up and move to the couch and sleep on the couch as I force her to get up.
We arrived down in the ER by 2pm and the Neuro Surgery team told us they were pretty sure Ellie was going to have to have a shunt put in. This is something we have been trying to avoid if possible, they where hoping the drainage of the spinal fluid would regulate and she wouldn’t need a shunt. As we sat in the ER Ellie began to cry and said “I don’t want surgery I’m already in pain and don’t want more pain, will I ever not be in pain again” this poor girl this is not the way to live. This was the first time Ellie has cried about her situation she has been such a strong person throughout this process. I have to say I had several breakdowns myself yesterday because I was wondering the same thing.
They did a Catscan and informed us that Ellie’s surgeon is coming in from clinic at a different location just to do her surgery. I felt a sense of relief knowing her surgeon was coming and having complete trust in him. A shunt would be placed in her brain and a tube will run down to her stomach to regulate drainage from the brain. They told us to give her hugs and kisses as they rushed her into surgery around 6:00pm. Although I was stressed, I felt a sense of a relief knowing that this could help Ellie feel like herself again. It was the first time I have smiled in days knowing that this could be a solution. Even though I felt a sense of relief I also felt a sense of sadness knowing that Ellie will most likely live with a shunt the rest of her life. With a shunt brings new dangers and precautions to her life but at least she will be able to live again. I spoke with my sister-in-law as she does shunt surgeries daily in California and she put me at ease as she told me there are so many people that live with shunts including adult athletes.
We went and got a bite to eat and closed down the surgical waiting room as we watched it dwindle to just us. Even the concierge left and the cleaning crew came in. Then Dr. Dipatri came in a little after 9pm and informed us that Ellie did well and can move all her extremities. He informed us that there was pressure buildup from the spinal fluid in the brain and this was for the best that we did the surgery. He informed us that he was getting ready to go home and that he would be back to see Ellie tomorrow. I was so happy he came in and did the surgery instead of admitting us and waiting till today. This gives her a jump on the recovery. Once we went back to the surgical room to see Ellie, although I was relieved I felt a sense of anxiety because I am used to a recovery from a brain tumor resection and this was a different surgery with different incisions to care for. She has a new incision in the back of her head where they shaved her head a little to place the shunt and also an incision in her stomach. They informed us that Ellie would most likely wakeup with pain and stiffness in her neck and stomach. Ellie did wakeup to tell us to let her sleep that she was good. By the time we got to a room and got settled it was 11pm. The nurse informed us that they will be waking her hourly to do neurological tests. Ellie was in some pain but fell asleep quickly for the night. I wish I could say the same for me, I didn’t get much sleep throughout the night. I did get a bit here and there but for the most part I was half asleep. Ellie woke up at 4:30am and got up to use the bathroom with the nurses help but this gave me a great sense of relief as I saw a glimmer of my girl back. I then had a smile on my face as she actually ate a bite of cracker and asked if she could watch TV. This was a first time she has even had interest in TV in a long while. It is now 5:30pm and Ellie is sleeping and moves around every so often to try and find a comfortable position. Last night they said they might even release Ellie later today or tomorrow morning depending on how she does. I have told them Ellie has a very important Date with Hamilton Wednesday Night and her surgeon did not see any issues with Ellie going. Now I actually am thinking that she might enjoy it even more. Ellie has been listening to the music everytime she takes a bath at home and has been looking forward to this so I was a little nervous about if we would be able to go or not, so I was happy to hear them tell me they didn’t see why not. I have my fingers crossed that we get to make it home tonight so we can get one good night rest and back to relaxation.
Thank you for everyone’s love and support. Tonight is the fundraiser at Gelsosomo’s, there are two seating’s 5:30 and 7pm. Please consider getting tickets. It is $20 for all you can eat pizza and entertainment put on by the Allegro Dance and Music Academy of Lemont. All proceeds will benefit the EllieFund to help with medical costs. The kids have been working very hard to put this together to show there support for Ellie. If you live afar you can get a virtual ticket for $10.
You can call Allegro Dance and Music Academy for tickets. They might be selling at the door too, not sure. I have had my plate a little full so have not kept up like I should. Call Allegro at 630-257-6964 for tickets or details. It warms my heart to know how hard these kids have rehearsed and worked to put on a show to help Ellie and our family. Please Please show them your support.
Its been a long and exhausting weekend and its only Saturday night. Friday was my birthday, I was able to get breakfast with some friends then spent most of my day cleaning up vomit from Ellie. I was able to get her to one activity, rehearsals for the Gelsosomo's fundraiser coming up on Tuesday night. Ellie will have a solo, please consider coming out and showing your support. It’s $20 for all you can eat pizza and improve from the Allegro Dance and Music studio, two shows 5:30 & 7pm including Ellie. After her rehearsal she then threw up again so we left her at home while we went to the rehabilitation home to have dinner and celebrate with my Grandma, and some family. When we arrived back home about 8pm Ellie was still just laying around and then began to throw up again. We contacted the Neuro Surgery Team at children’s and they told us to come down.
My friend came and got Jake for the night, we packed a bag, just put our coats on and received another call from Children’s. During all this Dave, Ellie, My Mom, & Dave sang happy birtheday to me and put candles in for me to make my wish. Bet you can guess what wish I was making. They got ahold of Ellie’s surgeon and he wanted Ellie to stay home restart the medication that makes her tired ALL the time, but empties the access water and see how she would feel by Mid Saturday. A dear friend of mine came by to give Ellie a massage this morning and after that Ellie basically has been sleeping and laying on the couch since. Luckily she has only vomited once so we are waiting it out another night.
I’m just so tired, I can’t describe the feeling but the emotional roller coaster has my MS acting up today. I feel like I am constantly nagging Ellie to drink more, eat, or wake up for a bit. She has started snapping on me and I don’t blame her. Who wants to be nagged when you don’t feel well, but on the other hand everyone is telling me I need to ensure she doesn’t get dehydrated and I get that. I am just so tired of being the bad guy. The one that has to keep on her. I just need a vacation from the reality we call our life. As I write this my eyes fill up with tears because I just don’t think its fair. Ellie has been through so much already and has so much more to go through and now this.
Every time I get in a funk, like today, I go on Facebook and go to the Elliestrong page and it reminds me to keep strong. Thank you, It is incredible seeing all the people, animals, Brett Favre, Theater Groups, Las Vegas National Friends, Sister Jean, Kids in other areas supporting the mission, Andrew McMahon, Fire Departments, Police Departments, Businesses, Phil Vassar
NBC News Cast, Ashley McBryde& Colton the Bachelor wearing an Ellie Strong Band, the list can go on forever and its so exciting everyday to see how many amazing people #EllieStrong has reached. Driving around town and seeing Green Ribbons and Green Lights are another pick me up when I need it. Green Light bulbs are at Lemont Ace Hardware here in Lemont and they will donate $2 to Ellie for everyone sold.
We have a huge week ahead of us so I need prayers once again that Ellie feels better and can get moving and grooving this week. Tuesday is the Allegro Studio Fundraiser at Gelsosomo’s Pizza, Wednesday we have an important Eye Doctor Appointment and then we get to go see Hamilton, Friday is a very important appointment with the Proton Beam facility & Ellie has a school dance depending on how she feels, & Saturday is the Lemont St. Patrick’s Day Parade Ellie will be the Princess in the Parade. On top of these busy appointments and adventures Ellie will have some school, tutoring, & Therapy.
I don’t know how to thank the thousands of people who have loved, prayed, and supported us through this journey. I always feel like I need to do more to thank people and hopefully at some point Ellie will get a little better and our schedule will open to give me more time to thanking people. For now, I hope and pray we can keep Ellie out of the Hospital because some of her friends planned a fun night tomorrow for her that she is excited about.
I included a few photos below of the upcoming fundraisers including Gelsosomo’s, St Baldricks, then also the Allegro group when Ellie went for rehearsals this week, And Ellie currently how she is feeling, and a collage of some of the facebook EllieStrong page supporters. Also updated lists of places you can purchase your #EllieStrong Bracelets. You can also get them online if you do not live close at www.elliestrongnationwide.com
Thank You Again
What a roller coaster of emotions kind of day. I barely slept last night thinking of the worst case scenario. Ellie has been laying around sleeping so much and throwing up every so often. My mind races right back to her original diagnoses when she was six and her brain was filling up with fluid. Last night the doctors contacted us to let us know that they wanted to add a Quick MRI of the ventricles but we would have to go to the outpatient center in Lincoln park prior to our appointment. We left the house this morning at 8am and made great time. We arrived really early to her appointment and they took us immediately. I was so excited thinking ok we can find out even sooner what is going on here.
We picked up a quick lunch and headed over to Lurie Children’s Hospital. When we arrived up on the 18thfloor Hemo/Oncology floor it was packed in the waiting room. It soon became apparent that we where not getting any results early. I was so sick to my stomach with every scenario running through my head. What are they going to tell us where do we go from here?
We where lucky enough to run into old friends from over 20 years ago that are going through a similar situation with there daughter. It was so awesome catching up and helped me forget about what was to come for at least a little while. As much as it was nice to see our old friends its so sad that we had to catchup in a children’s oncology waiting room.
Finally, we where taken back to a room and we got to see both Dr. Goldman and Dr. Depatri. I was jumping out of my skin and quickly jumped to “We have several people waiting for a phone call so I am really anxious.” Dr. Goldman figured I was referring to the vacation with the family. He told us as far as him and Dr. Dipatri are concerned we are good to go. There is no overly concern with her scan. A deep breath of relief as finally some good news. Then the news continued to be good well as good as it gets when you are battling a Brain Tumor. We will begin Radiation for 6 weeks’ strait, Monday through Friday starting April 1st. We then met with the Proton Beam Radiation Oncologist to discus long term side affects and short term side affects that Radiation has to the brain. Who would of thought this would be the best option we have for moving forward. The good news is that Ellie does not have to do Chemotherapy at the same time as radiation. This is very good news for us. Ellie will complete the Radiation and then we will scan and if the tumor shows growth we will continue to chemotherapy.
In the process of all the genetic tumor testing they found the BRCA1 Gene, which is the breast cancer gene and could also cause childhood brain tumors. So we met with a genetic counselor to go over my side of the family and Dave’s side of the family’s history. Between us both I think we have hit every kind of cancer in both families except breast cancer. Needless to say we need to move forward with more testing. First they will be testing Ellie's bloodwork after they get approval and see if this Gene was mutated from her tumor or if it is in all of her blood. If its all in her blood, then Dave and I get tested and we see if the genetic testing shows for both of us and go from there. Just another thing to pay attention to and monitor. At this point I really think I need a frequent visitor punch card for doctors.
For now, we are taking the win today. Vacation is a yes we have one more check for approval before we leave but we are pretty sure there should be no problems with this check. Ellie only has to start with radiation, and the headaches and vomit they believe is caused by a medication she is taking so they will discontinue the medication and monitor her. After such a stressful day I have hit a wall and will be resting for now until tomorrows full day of appointments. Ellie also has school to squeeze in tomorrow. Thank you for your continued, love, support ,& Prayers #EllieStrong
A mother with a battle ahead of her.