See next blog post for update on Ellie...
If you live local here are all the businesses that are selling #EllieStrong Bracelets
If you live in another area and would like some shipped please follow this link. I have two dear friends organizing this project.
We started the weekend off by going to my parent’s lake house to enjoy some relaxing family time. Ellie was pretty tired and has been sleeping quit a bit. Poor thing, her neck and head have been hurting constantly. She woke up on Sunday and vomited and then went back to sleep. We where able to get her out to get pizza for dinner at Buddyz and where able to get her to actually eat. Then Monday she slept until we begged her to go out in the snow and play. We thought maybe the change of scenery would help make her feel better. She went out and played for about 45 minutes. This made me so happy because she has been so miserable and lethargic. Ellie did not eat very much again Monday and on the way home she vomited again. Its not food vomit its fluid vomit. I immediately contacted her doctor team and they told us to come down to the ER. We arrived in ER about 5:30pm and they ordered an MRI. They decided to admit her and monitor her through this. We did not get to a room until after 1am. Ellie’s MRI results came back this morning after everyone was able to read them. They are seeing enhancement of the tumor but this is something to be expected after surgery so they are not too concerned about it. They are still stumped on what is going on with Ellie. I feel like these days in the hospital are here to remind me how much I love my home and my bed. Ellie has been laying and sleeping most of today its hard to say if its because she was up late last night or if its because she doesn’t feel well. We did narrow it down that its not the stomach flu because the pain is in her neck and head and then she vomits. Her Ophthalmologist came in and did some tests on her eye and said that the infection is gone but her eye is dry and is not producing the proper wetness. She was going back to speak with the team to determine what the next course of action is and will get back to us. But for now we keep taping. I am struggling to even function and type this post today but I wanted to get back to everyone who has been asking how things are going.
They put Ellie back on steroids to try to help her headaches and pain. For now, we wait for Dr. Dipatri to get out of Surgery and decide what the next course of action is. On a positive note we where able to get Ellie to a store to get her St. Patrick’s Day Parade Dress yesterday before all the drama began. She found the dress she will be wearing as the St. Patrick’s Day Princess in Lemont on March 9th.
For now we wait and rest. Thank you for the continued support and prayers.
BTW: Ellie did spend about 30 minutes today looking through all the photos on the Elliestrong Facebook page and she was smiling and laughing at all the cute photos. Thank you keep the photos coming she is really enjoying them.
This week Ellie has had so many amazing adventures. I spent most of my days between driving to visit with my Grandma in Indiana and taking Ellie to appointments. I wish I could of spent more time with my grandma but my time is really limited with all the appointments and home schooling for Ellie. But even though we could only stay for a few hours each time it was a great couple of hours. My grandma is pretty amazing. Ellie saw the Neurologists this week along with did her speech evaluation. I was very nervous because Ellie has been having really terrible neck pain and also headaches. But he put my mind at ease by explaining that Ellie is very sore from laying in the same position during surgery and that she will need to do some therapy on her neck. We are lucky enough to have an amazing Medical Massage therapist that came over to work on Ellie’s neck tonight which gave her some relief from the pain. We are also now doing more taping to work the muscles in Ellie’s face to help bring back the motion and feeling. Ellie also was able to take a Math test this week and get really close to catching up in at least one subject. I am looking forward to her getting back to school but it is so hard with so many doctor appointments. This upcoming week is going to be a jammed packed week of doctor appointments but I am hoping in the next few weeks Ellie can slowly make it back to school. Her energy level is really low at the moment and she struggles to stay awake as her body is still recovering from surgery and all the therapies take allot out of her.
Now we are moving on to more exciting things. The past few days have been filled with so many exciting adventures and news.
Ellie was able to go to the Blackhawks game on Valentines day with Dave thanks to the Lane Family who donated their season tickets to us. They then ran into some of our family at the game and where able to sit front row to the ice during the half of the game because the people next to them didn’t show up. Ellie was so excited to tell me all about the Hockey game. She said how much she loved dancing whenever they scored and how they won. Thank you Sarah and Bryan for hanging with Ellie and Dave they had a blast with you guys. She also got to take a tour of the locker room. She didn’t run into any players but she was super excited that the locker room was clean and not smelly lol.
We also have been overwhelmed by the amazing support from the community with all the green ribbons that where started by the Lemont High School Baseball and Football teams. How amazing it has started a trend of ribbons all around Lemont. My heart feels so full when I see the Green lights, the Green Ribbons, and #EllieStrong bracelets everywhere. It is by far the coolest feeling when I open my facebook and see green everywhere. It gives me chills knowing the love that is pouring out for my girl. We also got some exciting news this week that due to overwhelming show of support, phone calls to the city of Lemont, Ellie will be the St. Patrick’s Day Princess for the Parade here in town. As the village said she has stolen the hearts of the community. I know she has stolen my heart. We also got amazing news tonight that we are all set for house seats to see Hamilton in March. I can’t thank the people that made this happen enough. So many exciting things that have happened and are coming up in the upcoming weeks. I wont be updating this page for the weekend as we are going to spend some quality family time together.
My heart is full with love and generosity that has been shown to our family through this tough time. Thank You.. Thank You.. Thank You..
Today was a one of a kind, kind of day. I am speechless by the amazing love and support that we have gotten from Lemont and the entire country.
Today I had just gotten to Indiana to visit my Grandma in the ICU when I got a phone call from Lauren Petty NBC news. She said we heard about your story and are planning on attending Lemont High School today and would like to speak with you also at 12noon. It was shortly after 10am and we had just drove on side roads through this horrible ice storms to see my grandma all the way in Indiana. There was no way I was going to make it back and honestly It was really important for me to spend at least a little time with my Grandma. So I got her in touch with April Rita the wonderful person that began this #EllieStrong Campaign in the first place and then contacted my mom that had Ellie and asked if Ellie would meet with Lauren. Ellie agreed and that was the story. Crazy to think this happened so quickly. I got home and my Mom told me how incredibly impressed she was and my sister told me how she cried the whole time. I have been really good lately and have held myself together like a rock. Well not tonight. I cried when I watched Ellie on the news. I cried for so many reasons. I cried because I was so touched by the community and schools and by the outpouring love, I was also cried because I was so proud of Ellie, and proud to call her my own. I also cried because I am heart broken. Heart broken that she is going through this.
Tonight Ellie and I where sitting in the kitchen and Ellie said mom “why is god giving our family so much right now, you know, you have MS, Great Grandma is in the ICU, Grandpa has cancer, and me.” I thought for a second and responded “Because we are lucky, we are lucky because we have the best support system in the world. Many people do not have the love and support like we have. God knows we can handle whatever he throws at us because we have family, friends and awesome people helping us along the way” I have always hated the saint god will never give you more than you can handle because I have always felt like he has way out done himself with our family. But for the first time tonight I realized that we got this we have thousands standing behind us and supporting us. What an amazing feeling. Today was a good day. Even though it was hectic and I had several moments of wondering what is going on with my life. At the end of the day just watching Ellie on TV and thinking how darn lucky I am. It was a good day. All the yucky stuff can go to the waste side because nothing can tarnish this day.
I also was opening and doing bills and Ellie said to me “Mom, I need to get a job so I can help you. I have to be sixteen right?” I said “Yes” before I could say anything else she said “Ok when I am old enough I will get a job and help you with the bills” I feel like Ellie has matured light years since her surgery. Crazy awesome and so proud.
P.S. We had a viewing party of my little star at my moms house last night..
So we met with Ellie’s Radiation Oncologist on Friday at the Proton Beam center. The plan is for Ellie to have 30 – 33 treatments for 6 consecutive weeks Monday through Friday. As of now the plan is to start radiation once we get back from Vacation. But we will go in within the next few weeks and get Neuro Phycology testing done hopefully. And then they need to fit her for a mask that she will wear during her radiation. Ellie is holding an example in the photo. I tried to make light of it and told her she can use it as a Halloween costume. She didn’t find it too funny but I do find myself pretty funny at least. We will have an MRI and if the tumor shows growth our vacation will be cancelled and we will begin immediately. We are still waiting for Ellie to heal a little from surgery and also waiting on the molecular testing before the treatment plan is official. They are not sure if Ellie will be treated with chemotherapy at same time as radiation or after radiation until that testing comes back. So for now I need the world to pray that her tumor does not grow within the next few weeks because Ellie really needs this vacation and so do we.
So Saturday was a casual neon dance at Ellie’s High School called “Morp” (prom backwards) and she was really disappointed she couldn’t go. One of her friends along with a few other girls put on a Mini “Morp” Dance on for Ellie Friday Night. Ellie was so tired from the long day at the Doctors and a little depressed, last minute said she didn’t want to go. I didn’t give her an option and sure enough she had a blast. She came home laughing and smiling from ear to ear. She is one lucky girl to have some amazing friends. This group of friends made her a scrapbook and told her every time they get together they are going to add photos. It makes me so happy knowing Ellie has some amazing friends along with an incredible support system in place.
Also on Friday Night I went with Jake to the Wizards fundraiser at there school. We had a great time the PTO gave Jake and I tickets right by the court. Jake really wanted one of his cousin to sit with him so I sat with my other niece, nephews, and sister. It was really difficult being out in public but everyone was so awesome and they just gave me hugs and wanted to say hi when I walked in. It was a fun night but I was exhausted and to be honest I wanted to sneak out before the end so Jake and I left a little early. Thank you so much to School 113a Foundation and PTO for arranging this event it was nice and it gave me some much needed comic relief.
Saturday Morning my Dad and Mary Kay came to visit with us. As my Dad put it “We brought the whole damn Dunkin Donut Shop with us” My dad lights up a room every time I see him. He just makes me smile and laugh no matter what the situation. While they where visiting we got word that my Grandma had a stroke in the hospital. Needless to say we all jumped in cars and went out to Indiana to go see her. When we left the hospital at 8:30pm tonight she really had made strides. She is constantly improving but she has a long road ahead of her. They are monitoring her in the ICU and we are hoping that she just continues on getting better.
I am drained and cannot tell you how excited I am about everyone going green in Lemont and all over the country. Including the Harlem Wizers that wore the bracelets. The girls at the game with the green signs. Amazing, just amazing Thank you. I am going to try and add as many photos as I can from Facebook page EllieStrong As far as twitter and Instagram I am still learning. I wanted to share what I shared on the Facebook page for those that are not on Facebook.
So I wrote some of this back while we where in the hospital but waited till today to share because we had to share the information with Ellie today. Although she doesn’t comprehend the extent of the information she is sad but optimistic.
I am writing this on Friday, January 25th, But you wont see this until we are ready to release this information so sometime in February. Today was the hardest day I have had since the first day Ellie was diagnosed. My family all left to get to work around 2:30pm and the Doctors came in at 3:30pm the doctors asked if they could speak with me. So the team pulled me into the conference room right around the corner while willow the Art Therapist came in to work with Ellie. My thoughts where this cannot be good they have never done this before when we have been in the hospital. And once again a very serious somber Dr. Goldman and Dr. Dipatri sat across from me. The preliminary Pathology report came back and they wanted to tell me right away as they know that I want the information right away as they find stuff out. I totally forgot about the pathology report I was just so focused on Ellie healing and getting better. I thought the toughest part was over. The Pathology report said that Ellie’s PXA went from a Grade 2 to a Grade 3. Dr. Goldman explained to me that this is treated very different and it is very serious. He wanted me to sign paperwork to get a few more opinions and send out for DNA genetic testing that was not available the first time Ellie’s tumor was removed. I lost it I felt so alone even though this doctor team has been like family to me it wasn’t the same as my family all being there. Dr. Dipatri couldn’t look me in the eyes and Dr. Goldman was very sad. My first question as always was “Did I do this, did this happen because she had a break from Chemo?” Dr. Goldman and Dr. Dipatri quickly said “Absolutely not that it had nothing to do with the break that they might have not caught it in time if she wasn’t on a break and didn’t grow so rapidly.” Then Dr. Goldman went on to say “I have to tell you I have really enjoyed watching Ellie become a young lady this past year and half and really blossom and grow” Then there was much discussion about where we go from here. They informed me that we would have to hit the tumor hard and fast once Ellie heals. They have not decided on treatment yet because they have lots of tests, discussions before they can decide. They also cannot proceed with Radiation and Chemotherapy until Ellie is 100% healed. We decided not to tell Ellie as she needs to focus on healing before we tell her.
They told me that Ellie will be able to read you as soon as you go back into the room and they suggested that I take a minute to compose myself. I walked down to the Family room and felt like someone had punched me in the gut. I couldn’t breath and was crying hysterically. I called Dave but he was stuck at work. I called my mom and told her what they had told me and she turned around and headed back to the hospital. Then I called my sister and step-dad and told them so they could turn around and head back. My Step-dad has done the most research on this PXA and knows more than anyone I know except the doctors in the field so I just wanted him here. It seemed like a blur what they told me. I composed myself and walked back into the room where Ellie was and sat in the corner crying quietly out of Ellie’s vision so she couldn’t see me. I went into the hallway to wait for everyone to arrive because I couldn’t hold it in anymore. Luckily Willow the Art therapist is amazing and sat with Ellie during all of this to distract her.
Fast forward to today…
I am not sure how much more I can take mentally and physically. I feel like I am drowning and can’t get up to gasp for air, every time I try I feel like someone pushes me back under. What I have kept to myself is that my Dad was diagnosed with Prostate Cancer right before Christmas and then we found out it was aggressive. Then my grandma was admitted in the hospital earlier this week because she couldn’t keep anything down. Well last night she had chest pains and they found that she had 99% blockage for her heart. They cannot do a bypass because she is too old and they don’t think she would make it through. They did send her in to put a balloon in place and are hoping this will work. We are not giving my grandma the information about Ellie’s Pathology report because we don’t think that could put her over the edge and I would hate to be the reason that happens. And then this week we got word on the beginning plan for Ellie’s treatment. Ellie will do 6 strait weeks of Proton Beam Radiation Monday – Friday. After Radiation then we will discuss Chemotherapy but its going to be a much more aggressive chemotherapy. I am so physically and mental drained at this point I can’t imagine going every day on top of all the other appointments to get Radiation out in Warrenville. But we must go on and fight. What’s so interesting is that’s going to be my Dads same form of treatment for his cancer too. I wish sometimes God would stop focusing so much on our family. I know we are pretty awesome but I am pretty sure there are other families out there that he could share the love with. Have to throw some kind of humor in because this just doesn’t seem real and if you know my dad and I, we like our humor.
So today Ellie had a very hectic day downtown in Audiology and then with ENT. Ellie’s hearing has improved she still is still in the severe hearing loss category but an improvement is great because that means we can wait and hope that it improves more over the next month. Basically we come back in 4 weeks for another test and fingers crossed they just keep seeing improvement. Then we saw ENT at Children’s and I must say I fell in love with the doctor we saw. He had us laughing from the moment he came in the room. My mom and I both agree that laughter is the best medicine. The good news but not so good news, because I enjoyed him so much, is we do not have to see ENT anymore unless things get worse. Also they are weaning Ellie off of steroids because its just not safe to be on steroids this long. So one less medicine to deal with at the moment and one less Dr. to see. As the ENT doctor joked that he got us out just in time for rush hour because they aim to please. So we left the hospital and now was what Ellie was waiting for Chi-Tung Hibachi. We where celebrating Ellie, My Nephews Karson and Kolton’s Birthdays, and my mom and Step-dads 21st Anniversary all wrapped into one dinner. My mom, myself, & Ellie where driving from downtown to Oak Lawn and I missed my exit and the GPS took us through the ghetto. Not only the Ghetto but the side streets of the Ghetto, definitely an adventure to say the least. What I have learned by driving on the side streets of the Ghetto. I learned how to make a rolling stop and speed through the streets and do not stop for anything. I did knock 5 minutes off my ETA with all my new found driving skills. I wasn’t really worried about police as I don’t think they monitor the neighborhood we where in unless they are called.
Dinner was awesome we had a fantastic time with family making memories. Oh and we have tons of left overs along with dinner that was delivered tonight so that will get us through the weekend. I cannot thank everyone enough for feeding us. We definitely are not going hungry over here. After dinner Dave and I had to have a very serious talk with Ellie about what was going to happen tomorrow. Tomorrow we go see the specialist for the Proton Beam Consultation. So it was time to fill Ellie in on her condition. I did not tell her the news about the chance of survival because we plan on beating this and what’s the point of telling her if its not necessary. I did tell her that her tumor is now a grade 3 and is more aggressive. Her response was “Oh Man” I continued to tell her we have the best team working on it and we are going to kick this tumors butt together. I also told her she would have to do 6 weeks’ strait of radiation and we will start after our Spring Break Vacation. Her first response was “does that mean I can’t go to school for 6 weeks?” She just wants to be back at school with her friends. I told her “I wasn’t sure we will find out more tomorrow” But for now we are going to focus on fighting this tumor and do everything we can to get her back to every day life. We are looking for something new for Ellie to look forward too. I think our next adventure is going to see Hamilton the Play. Does anyone have any connections with anyone that could help us with this. Please reach out to me and let me know at KyleCuiching@gmail.com.
I don’t like leaving on such a down note so I wanted to thank April Rita, the schools, and businesses that are helping the town turn green with #EllieStrong bracelets. Every bracelet photo I see gives me strength and reminds me that we are not alone in this fight that we have such a huge backing of people who care and support us. I have copied and pasted the post she has going through the town with information on where you can get your #EllieStrong Bracelet.
💚 BRACELET SALE LOCATIONS 💚
(sale officially kicks off Monday 2/11)
$2 donation per bracelet, additional donations also accepted. All proceeds will go to Ellie Cuiching and family.
River Valley - during lunch Monday-Thursday
Old Quarry - during lunch Monday/Tuesday
Oakwood - at the Family Fitness night 2/15
St. Als/St Pats school has purchased one for EACH student. Parents can purchase at various other locations.
St Cyril - Bingo Night 2/7 and school pickup as well as other points - school will notify students.
Everest Academy has purchased one for EACH student. Parents can purchase at various other locations.
LHS - during lunch Monday/Tuesday as well as the home boys basketball game on 2/12
DR32 Girls Basketball - see Sam Rizzo
LAC has purchased one for each athlete.
Lemont Bears Wrestling has purchased one for each athlete and coach.
LHS Dance has bracelets for sale - see Coach Purcell
LHS Girls Track - see Maddy Horn
LHS Girls Basketball - see Emmy Horn
Lithuanica has bracelets for sale - ask coaches or Robyn Horn.
Happy Hands/Girls Scouts - see Jodi Stood.
Allegro has bracelets for sale during business hours.
ATI - see Peggy Grubb at front desk during business hours.
Christine Wilczek & Jason Bacza Brokers
Gelsosomo's has bracelets for sale during business hours.
Digs on Canal has bracelets for sale during business hours.
Lemont Natural Healthcare c/o Tim Filippini has bracelets for sale during business hours.
Mama D's has bracelets for sale during business hours.
State Farm (Caryn Montalto, by McDonalds) has bracelets for sale during business hours.
Terri ONeill has bracelets.
Covington Knolls - msg Shannon Phelan
Woodridge - msg Jeanine DeMaio or Michelle Morris
Fordham Estates - msg Marni Meloni
Kensington Estates - msg Amy Scoville
Kettering Estates - msg Lisa Bernas
Mayfair Estates - msg Joann Barton
Old Derby - msg Julie Hadjioannou
Abbey Oaks - msg Jane Woytek
Thank you to Nationwide Rail (Joe Barton), Gladys Smith, Jane Vitro, Sally Stotler for buying/selling at your places of business.
This community is #elliestrong ! 💚
Don't forget to take your pics and tag the pages:
Facebook - @elliestrongIL
Instagram - @elliestrongIL
Twitter - @elliestrongIL
Not sure how to get on Instagram or Twitter so Facebook is my old person way of life so please tag the facebook page.
I also wanted to thank RegionATA, Ann Coglianese and her team for giving us so many uplifting cards. Especially the two cards that I put below. One of an amazing artist and the other was Nathan Coglianese for making me laugh and smile. No Nathan is not a small child he is a 21-year-old big kid. Every time we even bring up the picture it puts a smile on my face. Laughter is the best medicine and we are working hard to keep our spirits up. Thank you so much for that. Till tomorrows update some of Ellie’s friends planned something amazing and fun for her I will share tomorrow night.
Thank You, Thank You, Thank You………..
Today was Ellie’s Eye Doctor Appointment which took up a big chunk of our day. They did several tests on there eye and determined it is slowly improving but she needs to continue taping her eye all the time. I did ask the Ophthalmologist if she could just have an hour break a day. He said he would prefer not but I can give her a break if I feel she needs it. Ellie’s skin is getting really irritated from the tape but I think taping is a much better option than surgery. She still has several spots that are susceptible to an eye infection and loss of vision so for now we tape. My parents took Ellie to her favorite Chinese Restaurant for lunch Orient Café in Homer Glen, Ellie is a Pork Fried Rice Addict. She really enjoyed spending time with them after a long day of Doctors appointments. Once we got home around 2:40pm she was knocked out till about 7pm. She gets so wiped out so quickly, it makes me sad. Jake, Dave and I went to family therapy with the Social Worker with out Ellie today. We felt like it was important to talk candidly about how we all feel and we didn’t want Ellie to feel bad like it was her fault. Not only that she just wanted to rest. It was a much needed appointment for all three of us. I think it helped Dave and I so much. Sorry I didn’t take any photos today. I think today is the first day I did not take photos since surgery. I am sure Ellie is appreciative of that.
Tomorrow is another long day of Doctor Appointments but my parents are taking us to Ellie’s Favorite Hibachi grill after for dinner at Chi Tung. My parents and Sister set this up right after Ellie had surgery and Ellie has been talking about it since. She is super excited and can’t wait for the show and her favorite noodles.
Oh yes by the way Thank You for the awesome dinner whoever brought the Steak and Potatoes that was a crowd pleaser for sure. I know that put a smile on Dave’s and Jake’s face for sure. Thank you again.
I didn’t update on Sunday, I just couldn’t. Ellie’s Doctor contacted me on Sunday about the next step with her possible treatment plan. We are not telling anyone including Ellie until it is official. We don’t want to send her on a Roller coaster ride of emotions until the treatment plan is officially nailed down. Anyhow I couldn’t get myself to go to my Friends for the super bowl we just needed time to process. We just went to my Mom’s and lounged around. Ellie was happy to play cards with her cousins for a bit. They always seem to cheer her up. She gets worn-out pretty quickly though.
Yesterday was a good day. My parents had a painter paint Ellie’s room from pink to a more grownup Gray she wanted. She has been begging to repaint her room for almost a year now. Dave kept putting it off but there is no better time then the present. So everything from Ellie’s room has invaded our family room and kitchen. We keep joking that we are eating in Ellie’s room and we are watching TV in Ellie’s room. Hopefully we will be getting our family room and kitchen back by the weekend as we move everything back in. Ellie is super happy with her room color. My son Jake had his wrestling meet yesterday and I decided I should be there as he is feeling really neglected lately because I am so busy with Ellie and all her medical issues. It was an awesome meet, Jake pinned the kid in the first round. I was so proud and so happy I could be there cheering him on. It was so nice that everyone welcomed me and just had normal conversations with me. It was not easy to get out and about in public again but I really appreciated how incredibly nice everyone was to just have normal conversations with me. I was exhausted last night and didn’t blog because I went to sleep early.
Today was a big day for Ellie. She had an hour of tutoring for school and an hour of social work. She is so tired just after two hours. I hope she gets her energy back soon but I know the reality is by the time she gets her energy back we will be starting treatment and her energy will be depleted.
I know my family has told me they have had people ask questions about the tumor and treatment plan. I figured I will try to answer a few of those questions the best way I can at this time. Ellie’s tumor was not fully removed although a big amount of tumor was removed Ellie still has what some people would consider a pretty substantial tumor left. If you look at where it started I would say its very small. They cannot remove the access as it is attached to the brain stem and would cause serious damage. We do know there will be some kind of treatment and we have a preliminary treatment plan in place but we have to wait for some of the testing to come back before we move forward. So with that being said we are not ready to share the information yet. It could take up to 20 days to get the results back from the genetic testing and pathology report. We also have sent her tumor out to get a second opinion. Also Ellie has a long way to go on healing before we start hitting her with treatment.
I wanted to say thanks to some wonderful people that did fundraisers this week for Ellie. I really appreciate all the love and support.
• Thank You to Shannon Phelan for setting up the super bowl squares, and to everyone that bought one.
•Thank You to Broadway after School for donating the proceeds of the 50/50 raffle at all there plays this past weekend to us.
•Thank You to The Core Body Combat Class at the core for coming together and supporting our family. Also thank you for showing my sister so much support she really enjoys this group. My sister considers my kids like they are hers so this is a real struggle for her also.
• Thank You to April Rita for setting up the #EllieStrong bracelet movement. I can’t wait to see the town in green. I know that they will be going on sale on Friday in different places or people in town. You can get the information on Facebook at Lemont Mom. Please take your photo with your bracelets and tag #EllieStrong
• Thank You to Wendy Pawlak for setting up a food train. Having one less thing to worry about on a daily basis is awesome. (Also thank you for everyone that volunteered to bring us dinner)
• Thank You as always to Terri O’Neal who I don’t believe ever sleeps. Terri O’Neal, Hope and Friendship have arranged a few fundraisers for Ellie so far and she is always in my corner since day one. I did not know her until Ellie was diagnosed when she was six and someone put her in contact with me. What is now a friend was a complete stranger doing huge things to help our family. She has been such a great support through this all. I cannot thank her enough.
• Thank You to Lisa with Lil’ Me Photography. She is donating her time and taking photos as a fundraiser for Ellie. Please see the other page under “Upcoming fundraisers” for more details. Not sure if they have any sessions left but she is donating 100% back to Ellie. And it is a super cute backdrop.
I can go on forever because the amount of people that have stepped up to donate, cook dinner, give a card, or just show love and support is endless. What an amazing feeling it is to have so many people in our corner cheering Ellie on as she fights.
Thank You So Much.
We have a big day with the Eye Surgeon tomorrow and we could use some prayers that Ellie doesn’t have to have her eye taped 24-7 (BTW we gave her a break today during tutoring she was happy to have it off even for the short time)
Yesterday was a lay around kind of day. Ellie was really tired most of the day. My MS is acting up again so its not easy to write and type right now so I decided to just make one post for Friday and Saturday. Also because it was a lay around kind of couple of days there wasn’t much of an update.
We are still working hard on therapy at home when Ellie is up for it. We are hoping to start school bound tutoring this upcoming week. We have so many appointments coming up this week with ENT, Ophthalmology, and Hearing. And my family has a little pick me up surprise for Ellie after one of her long days at the hospital.
I have not really left the house at all. I’m afraid of people asking how Ellie is doing. I don’t have a great answer and its been a struggle. I just want to be able to give some good news. I know my family is struggling with that question also. Sometimes not even bringing it up is the best way to handle it. Or just a simple say “Ellie is in our prayers.” I started this blog so that we don’t have to answer the questions over and over on a daily basis. We are living it every minute of every day and once in a while it would be nice to just not talk about it. I was suppose to go to my nephews play today and I cancelled last minute because I just didn’t know how to face people yet. I know I will have to get myself out and about soon to set an example for Ellie but for now I am hibernating.
Last night Ellie was excited that her 2nd Cousin or what she calls her BFC “best friend cousin” came to visit. We really enjoyed our time with my Cousins family as it brought joy to Ellie, and the rest of us also. Ellie was exhausted again by 9pm but at least she was joking and having fun with other kids for a bit. Love that my Kids and my cousin’s kids are such good friends. Oh yeah and our husbands get along great too. I am very blessed with an amazing family.
Today we had a visit from Ellie’s Great Grandma, my Aunt Kyle, & Uncle Butch. They brought us lunch and hung out. I really enjoyed spending time with my Grandma, my Aunt, and Uncle. We just talked about all sorts of stuff none Ellie related and I needed that. It was a great day of relaxation for Ellie. Tonight I was cuddling with Ellie and I said “I love you, Ellie” and her response is “Yeah I just wish life loved me too” Poor thing is so sick of taping her eye shut and doing therapy. I keep reminding her that she just had surgery and healing takes time. I have to remind myself of that often also as when you have any other surgery it takes a minimum of 6 weeks to heal and I would say brain surgery is a pretty intense surgery.
All and all Ellie is spending time sleeping and laying around a lot of but she is also healing. We have plans to stop by a friend’s house for a little bit for super bowl and then we will be watching the rest of the super bowl with the family.
Thank you so much from the bottom of my heart for everyone that has donated already to the Go Fund me page. Please take a moment and share it on Facebook for me. I hate begging but I feel so hopeless and this is the only thing I know what to do to keep our family afloat during these crazy medical expenses. The Link is: https://www.gofundme.com/qdurkx-ellie?utm_source=facebook&utm_medium=social&utm_campaign=fb_dn_cpgnsharemore_r&fbclid=IwAR0_mKyhcB4F4r5bnLVqPRwu6bGmuO0GqqEEXQN9RXvQdiyVtWG5sSymB4o
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Thank you for following our journey again. The love and support is incredible.
Just another roller coaster kind of day.
We started our day off at New Lenox Lurie Children’s outpatient with OT therapy testing. I am so incredibly grateful that we have an outpatient facility so close to home. It was nice to be able to go only 10 minutes from the house. We spent about 2 hours with the OT testing Ellie. It made me so sad to watch Ellie struggle with small things that never gave her a hard time before. But we are just going to keep up her therapy at home consistently and try our best. We are now onto taping her face to help with bring back feeling and function. Ellie is very self conscious about this. The Doctors are very hopeful that she will regain function. It just is going to take time. It was very nice being close to home but we had to go downtown to Lurie Children’s anyhow for Ophthalmology appointment.
We went strait from the Outpatient Lurie Children’s downtown to the main hospital. Ellie saw three eye specialists and they also consulted with the Surgeon. The second specialist that saw Ellie two days ago started by saying that she met with several doctors/specialist and they feel that the best option is to glue Ellie's eye shut but this would be temporary until we get her into surgery to sew her eye shut. Then we informed her that Ellie will begin Chemotherapy in about three weeks. She then said when is the last time you ate or drank? She then said I am going to speak with the surgeon and try to get you in today. We need you to have surgery and have time to heal before chemotherapy starts. I feel like I got punched in the stomach. It was all moving so quickly my daughter was just here for an eye doctor appointment and we where leaving with her eye sewn shut. I thought to myself “What the the hell this is not fair. Isn’t she going through enough already”
The Doctor then said let me check your eye and see where we stand. She placed the eye drops that show the damage that has been done to the eye. She was super excited and surprised by how much Ellie’s eye had improved in two days. She said wow you are doing a fantastic job to me. “Yes, I am” I said while giggling and patting myself on the back. She then dressed in scrubs to go see the surgeon and show him the photos. She then came back and said we have discussed it and we think as long as you keep taping it shut and working on it we will continue to just tape it. I have spent so much time trying to perfect taping the eye. Ellie is miserable with her eye taped shut but she is handling it much better then I would. We have another checkup next Wednesday with the surgeon and we need to show improvement by then also or surgery will be still on the table. So for now we tape Ellie’s eye shut while putting medicine in her eye daily. We also have an appointment scheduled for the following Wednesday with a cornea specialist. I didn’t know they had so many eye specialists out there.
Ups and downs of the day have me exhausted. We got home at 3:45pm and The Meloni Family brought us dinner which really is greatly appreciated on a day like this where I am mentally and physically exhausted. I know that Wendy Pawlak said she is setting up a Food schedule for those that are interested starting Monday. I cannot tell you how nice it is not to think about dinner when I spend all day thinking of therapy, Doctor Appointments, and just getting Ellie healthy.
I am happy we do not have any Doctors appointments tomorrow and have a day off. I am going to have to revert back to a paper calendar because the doctor’s appointments are piling up and its easier for me to see it written on a calendar. I already have my Neurologist appointment and an OT appointment for Ellie scheduled on my Birthday. Ellie was really apologetic and I told her are you kidding adults don’t like their birthday and the world doesn’t stop on there birthdays. Also I wouldn’t want to spend the day with anyone else.
So to recap today ended up being a great day all and all.
A mother with a battle ahead of her.