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………..
A mother with a battle ahead of her.