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
Ellie has been doing better but still tired since we have been home from the hospital. We have had a week full of love and support from everyone. We feel like we have been wrapped in everyone’s arms and the support has been amazing. I am apologizing in advance if I forgot anything but my memory has been a little off the past week. But Jake had an amazing day on Friday. His school Old Quarry Middle School along with St. Cyril a private school got together and raised money to make a special day for him with surprises for him. He came home and told me it was a great day. I can’t thank everyone that made my boys day so special. He was on top of the world. Then we found out he stuck an eraser in his ear and it got so deep that I thought we where going to have to go to the MRI. Most moms would panic not me I laughed. Because at some point life just is unreal and you have to laugh because the alternative is crying.
Saturday we spent most of the day laying around and hanging out. Then my girl friends took me out to get out and have a good time. I was so grateful for them to get me out and about. Jake got to go with a friend of mine to Feed my starving children. Unfortunately, Ellie was not up to it so she just laid low on Saturday.
Sunday we got to go to the Movies and that pretty much wiped Ellie out for the rest of the day. We had an amazing visit from three awesome guys who started the Weish4ever foundation who awarded our family with $5,000 with two stipulations. One they got to meet us and second that we do something fun with it. Its so nice to get permission to spend something on doing something fun to forget about the bills and the stress of life. Now Dave and I have allot of thinking to do on what to do with it. Dave has a hard time spending any money especially with all the bills coming in. I always say if being Amish with no electricity or running water was an option he would jump on it. Good think he is married to me and I draw the line at no power and running water.
Monday I had my 6 hour MS Medication transfusion and it has knocked me on my but. Tonight is the first time I actually got out of bed. I am so blessed to have an amazing support system that helps take care of doctor appointments etc. for Ellie and Jake while I’m knocked off my feet. Today was a huge day we got Ellie into School for her Studio Art Class. She slept late this morning woke up went to school and came home back to bed she went. Poor thing has no energy; it breaks my heart. I contacted doctors yesterday because she has also been vomiting. She is on a medication that this could be a side affect but also at the same time this could be an issue with her tumor. We received a phone call tonight that tomorrows big appointment has been extended and they added a Rapid MRI of the Ventricles. I am super nervous and praying that nothing is majorly wrong that this is just a simple side affect of the medication she is on. I believe if there is a blockage they would have to go in and put a shunt in and that’s the last thing we want is more surgery. Tomorrow is the day we get word if we can go on Vacation or not. My stomach as been turning for the past few weeks waiting for the final word. We will also find out the treatment plan and where we go from here. This is a huge day and it can’t come fast enough.
I wanted to take a moment and thank all the Facebook Elliestrong supporters with your photos of bracelets. It is by far the coolest thing and it reminds us daily to stay strong. Unbelievable that Brett Favre, the news anchors on NBC, Elevator man, construction workers, Firefighters, police officers, us Marshalls are all wearing them. Its so exciting to see how far Ellie’s word has spread. Thank you for your continued support. Our road is just beginning and its going to be a long one and we need all the continued prayers and support we can get.
There are several Elliestrong events coming up. Please comeout and support the events.
Wednesday March 5th two seatings 5:30pm and 7:00pm
Brave Laughter and Song put on by Allegro Dance and Music Company.
$20 Tickets for Pizza Buffet, Music, and improve entertainment by Allegro Academy Students
(I think Ellie is going to be part of this) She is going to rehearsals tonight
At Gelsosomo’s pizza 206 Main St., Lemont, IL
Get your Tickets by calling 1- 877-ULearn3 All proceeds benefit Ellie Cuiching
*See Flyer below
Saturday, March 9thSt. Patrick’s Day Parade in Lemont
Ellie will be the Princess for the Parade
Come out and cheer her on
Sunday, March 10thSaint Baldrick’s at Frankfort Black Belt Academy
They will have raffle baskets and silent auction items that will benefit Ellie along with two other children battling childhood cancer. See flyer below
Wednesday, March 13thNex Mex 319 Front St., Lemont
15% of there sales for the day will help Ellie and another family battling childhood cancer
Also #Elliestrong T-shirts will be on sale that evening at Nex Mex
Friday, March 15thLemont High School Talent Competition
Ellie will be performing in this event
50% of admission costs will benefit Ellie
Tickets will be on sale during lunches at the High School and at the door
See flyer below
April 5th& 6that Naperville Yard
Taekwondo Tournament Chi-town Showdown is now an Elliestrong event
All admission will benefit Ellie, proceeds from #Elliestrong Tournament t-shirt sales, and someone will be selling bracelets at the event on the 6th.
If I missed any March events please let me know.
Bracelet sales around Chicagoland or you can go to www.elliestrongnationwide.comand order yours
•Ats-a-Nice Pizza has bracelets now in Romeoville
Pawlak Properties (Keller Williams) will donate $500 to every house sold or bought in 2019 if you mention #EllieStrong
Call (630) 796-0199
That’s Sew Layla headbands – at Higher Ground Coffee in Lemont –
223 Main Street, Lemont, IL
you can pickup your green that’s so Layla headband and $2 will be donated to Ellie. This young lady started this headband company and is giving back. Photos below
Eich’s Downtown Lemont
Is selling #EllieStrong Tshirts and $8 a shirt will be donated to Ellie. Follow link below to order
Elliestrong Stickers are for sale at some local Lemont Businesses.
Digs on Canal
Please let me know if I am missing anything
We just got home not to long ago so I won't be updating tonight. I also won't be able to update tomorrow because its my big MS infusion day. Whenever I get this done it knocks me off my feet for a day or two. So hopefully Tuesday I will get an update on here.
A mother with a battle ahead of her.