What an incredibly long day. Feels like its midnight at 6:30pm. Ellie is in a room and visitors are extremely limited as hospital policy’s have changed. It’s sad but it is for the protection of the kids. Also we got to our room and found out flower are not aloud on this floor. We already received flowers and Dave is going to take them home I have not seen them yet but thank you to whoever sent them. Any other deliveries can be brought onto the floor. This is a learning curve with all these new policies. So appreciative for Dad for making me laugh all day while waiting for Ellie to get out of surgery. The on going joke is that I don’t answer my phone, so I told him to text me. So we sat next to each other in waiting room while I texted him he was calling and leaving messages. We have so much fun together. Look at Jake’s smile with his childhood Babysitter family friend, Kasey, who took time out of her schedule to take him Bowling tonight while we where in the hospital. Jake’s smile is the best gift I have gotten yet. Ellie is having extreme nausea and has not been able to keep even a sip of water down. She is resting comfortably. Its too soon to tell the side affects of the surgery yet, right now we are noticing weakness on her left side, and weakness on her right side of her face. She is one strong cookie and actually formed a sentence to us tonight before going right back to sleep. Dr. Goldman her Neuro Oncologist stayed late to visit her in the hospital. He came in with her neuro surgeon and a bunch of residents to check in on Ellie. He did his normal cracking of jokes. His on going joke is that Ellie and him are going onto Americas got talent as a duet. He had us all laughing, Ellie not so much right now. We also had visits from nurses that have known Ellie since she was six and we reminisced about the old hospital and the last brain surgeries Ellie had. I am feeling extremely blessed right now for an amazing support team that is standing behind us. I can’t believe the love and support we have gotten, Thank You!
Ellie is out of surgery. It seemed to go really well. He said they got a big chunk of the tumor. It was a little bloodier then normal due to all the vessels going through it but she didn't need a transfusion. She has weakness, he woke her up for a second and was able to get a squeeze on her left side which is a good sign. Now we just can't wait to see her and we are onto a long recovery process.
Got an early start this morning. Ellie was taken back and surgery is guessed to start at 9:30am and last at least 5-6 hours. It was a rough drive down this morning, as we got closer I got more nervous. I practiced a lot of deep breathing. I did my best to hold my emotions back not to worry Ellie. Ellie did a fantastic job holding back her stress and nerves. It was a lot different then last time. They spoke to us about the proceedure. Ellie also had to sign consent forms for some stuff. I am so proud of her and how strong she was/is through all of this. She was amazingly strong as the she really understands more now that she is older and the Doctors spoke directly to her. I brought with the amazing blanket made out of my Grandma’s shirts, Mrs. Zafar we truly love these and I feel like a part of my grandma is with Ellie. Also the Pillow made out of my Grandpa Georges shirt from my Aunt Becki. If anyone is watching over Ellie, its my Grandma and Two Grandpas. They loved her so much and at both of there funerals I asked them to watch over her. Thank you everyone for all the love, support, & Prayers. Its going to be a long day.
P.S. Does anyone know what the LIVE THE DREAM on the building is for?
What was suppose to be a relaxing nice family weekend has turned into a very stressful weekend of my thoughts taking over my brain. First off I am giving a very short brief summery of how we discovered Ellie had a brain tumor when she was 6 then the stress will become clear.
When Ellie was in 1st Grade she used to wakeup and cry she didn’t want to go to school every day. She would then proceed to the bathroom and throw up maybe once a week. (I did this when growing up also so I thought nothing of it).
Over Christmas break she had a few headaches during the night and that caused us to call the doctor and make an appointment. She had a catscan and she was sent immediately to the Children’s Hospital downtown. They then immediately started monitoring her till the next morning when emergency surgery was scheduled. During this less then 24-hour period we where told that Ellie’s brain was filling up with cerebrospinal fluid due to her tumor obstructing the fluid from draining. They informed me if I waited even another day before brain surgery Ellie would have died. Fast forward 7 years to the past few weeks. Ellie has developed symptoms of being fatigue and headaches that have been progressively getting worse. Saturday morning, she threw up what I believe is cerebrospinal fluid. I immediately paged the surgeon on call and started hospital packing. Needless to say there where lots of tears in our house while we waiting for the phone call. And then the On Call Surgeon called me back to discuss what was going on.
I explained what Ellie’s Symptoms and background and his response was we will not be changing Ellie’s surgery it is scheduled for Tuesday unless there is an emergency. He then said I don’t believe this is an emergency because she has not had the symptoms long enough. Then once again the choice was ours to make (BTW I’m tired of making choices) He said we could bring Ellie down to the ER they will exam her do a quick MRI but then they would monitor her in the hospital until Tuesday morning. (In short he said she would just be laying around in the hospital and that would add onto her stay) or If I felt comfortable enough I can just monitor her at home and if things got worse I would bring her downtown. He recommended in a non lawsuit kind of way that he would choose to stay home. I can guarantee that 90% of parents would say we are heading down to the hospital and would say your crazy if you don’t go. Well I am the 10% and I am crazy parent, or just a parent that has been through an incredible amount with her child and understands way too much about my daughter and brain tumors. I decided to keep Ellie home and commence family weekend. If Ellie went down to hospital she would have to go through ER and who knows what she would be exposed to and then if she got sick surgery would have to be put off even longer. But not only that we are being selfish as a family. It’s a hard thing to swallow but you never know if this could be our last weekend as a family and we are going to make it count. Another factor was Ellie begging me and crying that all she wants to do is snow board before surgery and spend time with family. Well guess what this crazy Mom has taken her daughter with a brain tumor Snow Boarding.
I am sure I am the topic of many conversations and being critiqued right now but please do not judge unless you have lived a day in our shoes. I obviously would cancel everything and head to the hospital immediately if things where getting worse or if we could not manage Ellie’s headaches. Ellie and I had this conversation and I informed her how serious it is to tell me of any changes.
Ellie had a burst of energy and excitement Friday Night and again Saturday morning that has been missing for about a month. It was so nice to see. She has gone through so much and one day of care free fun, no Medical talk, just being a normal kid is exactly what the doctor ordered. When Ellie was 6 my decisions would have been completely different. She did live in a bubble for sometime but as we have done this for 7 years I have realized over time that Ellie needs to live her life because there are no guarantees. Although it seems that I am taking this very lightly I promise you the lack of sleep and my brain have NOT taken this lightly at all. Every scenario has run through my brain, my job to worry, but it is also my job to keep it to myself and let Ellie open her wings and fly. And just have fun.
We had a fantastic time at Wilmot for the day, then we got back to my parent’s house and later that night Ellie was laying around again in pain, Ellie decided to spend last night at my parents with her cousins. I received a phone call from my mom this morning that Ellie was lethargic, had a bad headache, & threw up again. So the call began again to the hospital as I prepared to meet my mom at Children’s for an over night stay. Once again a different Doctor on call called and he was not too concerned because we are scheduled to be in so early tomorrow. He said since we would be in the hospital within 24 hours he would not recommend coming down, let Ellie enjoy her last night in her bed for a while.
Some of you might not be aware that I have MS and a trigger is stress. Tell me how I am supposing to keep my stress levels down. I am hoping that my adrenaline kicks in like the first time Ellie went through this and I just get through this without a MS flare up. We leave at 5am for the hospital, I’m fortunate enough to have family close by to be at my house to take care of Jake and the Dogs.
The only thing with Ellie feeling so lethargic and having headaches it reaffirms that we made the right decision to have surgery.
Thank you for letting me vent, this blog helps me so much through everything. I will try and put quick updates as tomorrow goes on. It’s going to be a long day and I appreciate all the prayers. Keep the prayers coming we need all of them. I added the photos from Snowboarding this weekend and time with Ellie’s cousins. It was so nice to see her smile and having a good time.
Please make sure to read this whole post as Important information about her hospital stay is below.
First off we received word that Ellie’s tumor has not spread to her spine and surgery is scheduled for Tuesday Morning. I feel extremely relieved and thrilled but now onto the next step and stress, the surgery. I had a great day today with friends who let me vent and talk about what is going on. The reality of Ellie’s surgery has really hit home today. In 4 days the doctors will be cutting into my babies (ok not so baby anymore) brain. They will do there best to remove as much of the tumor as possible. There are many possibilities and factors and no guarantees. The only thing we know for sure is that they will not be able to remove the whole tumor. There is a possibility of them opening her up looking at the tumor and closing her back up as they don’t know what they are looking at until she is opened up. It’s a Pleomorphic Xanthoastrocytoma (PXA) which means It can transform into a different tumor but they don’t know what they will be looking at until they open her up. Last time they went in there where major veins running through the tumor and it limited how much they could remove. So at this point we wait and pray that it is a successful surgery and that they can remove a huge portion of the tumor with no side affects.
This weekend we are spending the weekend as a family as much as possible before Tuesday. I made a promise to Ellie last year that I would put her in Snow Board School this winter. Well no time like the present since this will be her last chance to go snow boarding this season. We are going to take her this weekend for a day trip, its going to be a cold one but she is excited. Ellie’s headaches have gotten worse over the past week so I am praying that it does not keep her from having a great time.
I wanted to once again say how impressed I am with the amazing love and support we have received from our family, friends and the Community of Lemont. Jake came home to tell me that the whole school made cards for Ellie that just warms my heart there are are so many people in Lemont supporting and cheering for Ellie. Thank you so much.
Ellie’s hospital Stay: I am going to try an answer the most asked questions I have gotten over the past week.Do they have to shave Ellie’s head? No, her bald doctor made a joke that even though he doesn’t look like it he is great with hair. They will part her hair and then open her up. How long will Ellie be at Lurie Children’s Hospital? The estimate is 4 days but it could be longer depending on her recovery.Can her friends visit her? Lurie Children’s has a new policy which if you ask me sucks. No one under 18 can visit her so we will be doing as much facetime as we can to keep her spirits up. Also only 3 visitors will be aloud at a time so its very limited. Much different then the first go around. Once we are home we will control the visits to a minimum to keep from spreading of infection and sickness to Ellie. What do we need at this point? I really can’t tell you my head is spinning and I am living one day at a time right now I am so focused on the surgery and getting Ellie through that I can’t even tell you what we need. The one thing I ask is that you spread the word of this webpage LoveforeEllie.com as it is the easiest way for us to keep everyone up to date and lifts our spirits when we see how many people are visiting Ellie’s site and cheering for her. She had 3,000 website visits this week alone.For now, my next update might be Monday before surgery if not I will update before, during, and after surgery on Tuesday. For now, we are enjoying our last few days of fun before we are stuck inside for a while.
We had a very busy and exhausting day. Ellie went to Dentist, Eye Doctor, we picked some PJs for Hospital, & Completed her 2 hour MRI of her Spine. We arrived home at 5:30pm to very nice surprises from Friends. We do not have any word on Ellie's MRI yet but should know something tomorrow. For now we are thinking positive thoughts that the cancer has not spread and we are full steam ahead for Surgery on Tuesday. I will update the blog tomorrow as soon as I get word from the hospital with the results of her MRI. Thank you everyone that helped brighten her day today and as always thanks to everyones love and support. I am so grateful to have such a great Community, Friends and Family all here supporting and cheering Ellie on as she fights this.
First off I wanted to thank you for giving us our space this past week as we had tons to think about.
I cannot tell you how many times in the past week I have sat down to write this update and have stopped and shut the computer. I am finally going to muscle through this and complete this update once and for all and get it off my plate, my plate is over flowing and I could use a Jumbo size plate at this point to keep everything from spilling over.
First off its hard to explain the emotions that have gone through my head over and over since we got the news that Ellie’s tumor has grown on Dec. 28. I know I have told people the chances of it growing again where very high. But saying it and actually believing it are two different stories. In my heart I was thinking ok we are getting through at least high school with no chemotherapy and no brain tumor growth. So when we heard it had grown my heart sank and that dream flew out the window.
Last Wednesday we met with Ellie’s Doctors Teams and they gave us some options. Options that no parent should ever have to make I knew it could not be good news when we where in the exam room and we had a visit from both the Nurse Practitioners, Art therapist, the Nuero surgeon, and the Neuro Oncologist all at the same time. And to make things more obvious that the news was no good Dr. Goldman had the most serious face I have ever seen on him. The room was crowded as my Husband, Mom, & Step-dad all joined me for this meeting. Ellie said this must be really serious If everyone is here. Dave has probably taken off 5 days total off work since Ellie was diagnosed 7 ½ years ago. That includes all three of her brain surgeries. He is doing his best to support our family by working while I manage the medical aspect.
I really didn’t know what was about to be told to us. Then they informed us that Ellie’s tumor has grown 40% and they cannot tell how many months it has been growing. We do know its less then 6 months but could be as little as one month. I cannot even begin to describe how I felt in the moment. It felt like someone took the breath completely out of my body. The doctors gave us two options and we had to make the decision as her parents.
Ellie’s team explained our options.
Option 1: Ellie goes back onto the Chemotherapy Study she did in the past AZD6244. This would be chemotherapy everyday for two years’ strait. This is not the very last chemotherapy she was on but the previous one. We know that it kept her tumor stable but did not help shrink it and as soon as she went off the Chemo again her tumor grew. So after the two years the likelihood of having to have surgery would be extremely high.
Option 2: My most feared option
Ellie would have brain surgery the sooner the better. They would remove what they can as they can never remove the whole tumor due to it being located on her brain stem. Then after she healed she would then have to go onto the AZD6244 Study. Now the kicker of this choice is that there are only 3 slots nationwide of this study and there is no guarantee those slots will be available to Ellie when she is ready.
We sat with the doctors for Hours and discussed pros and cons of each option. You can tell both the Neuro Surgeon and the Neuro Oncologist where leaning towards surgery now. But with that comes much time off school and brain surgery is no walk in the park so the decision is not cut and dry. We went back and fourth for hours which one is the right decision. As Dr. Goldman said “Years ago a doctor would just tell you what you would be doing but now days it is more pressure on the parents to make the decision” He wasn’t kidding as the question was posed from someone in the room “You have to think of if there where complications in surgery and you chose to do surgery, and on the flipside how would you feel if it grew and became a bigger issue and her life was on the line” So as you can see there was no good option if you ask me. Her life is on the line any way we decided.
We finally left and had dinner and discussed it as a family with Ellie. Ellie, said I want to do it and get it over with. I’m tired of these headaches and not feeling good. That was the deciding factor. I never dreamt we would be at this stage where Ellie helps make the decision on her health.
So with that being said Ellie is scheduled for Brain Surgery Tuesday, Jan 22nd to remove a portion of her brain tumor. But not to make things more complicated we go in for a MRI of her Spine on Thursday and if her Cancer spread to her Spine we will have to go back to the drawing board how we will fight this battle. For now, we are thinking positive thoughts that it did not spread and are planning on Surgery Tuesday. It has been an emotional long draining couple of weeks. I truly appreciate all the love and support and again apologize if I do not respond to your messages as I am just trying to get through my day to day life at the moment.
I am asking that you get updates from this blog and not from us in person. As being asked all day long just stirs of feelings and makes us want to keep to ourselves. And if you know me keeping to myself is not an option. I am an open book but this tumor does not define our family. We have another child in several sports. Ellie loves act, draw, and sing. We are still focusing/praying that she makes to the next step for AGT. She is so much more than the girl with a brain tumor and I ask that we focus on that aspect. I promise to do my best to update this blog as much as possible.
Thank you again for the love and support as we embark on a very rough and bumpy road ahead of us.
Sorry this is so late, it was a very long draining day and we rolled into our driveway at 7pm from the Hospital. We met with the Doctors today to discus Ellie and what the next steps will be. Two things where dead give away that it was serious. First the Neuro Oncologist, Neuro Surgeon, two nurse practitioners, and Art Therapist joined us to discus Ellie’s MRI. It was a very crowded room. Second Doctor Goldman had a very serious face on. Ellie’s tumor has unfortunately has grown by 40% in the past 6 months. We where given some options. We spent several hours asking questions weighing the pros and cons of each option. We shed some tears and spoke again about options. Then Doctor Goldman told us to go home and discuss it some more, watch a cartoon decompress and discuss it some more before making a decision. There are many moving parts before we can even finalize a decision. Ellie has to have a MRI of her spine and we need to make sure her tumor did not spread. They do not believe that it did but before we can move forward we need to ensure it has not. So as much as I am an open book I am keeping our options to ourselves at the moment. I ask that you respect this and just pray for us to make the right decision. I do not want to hear about any all natural medicines or anything else at this time. We just need time to process and time to come to a decision that works best for our family. Ellie now being 14 is a huge part of this discussion also. We are taking her thoughts into consideration as we make what could be a life changing decision for her. I cannot thank you enough for the texts, messages, and calls, I’m sorry if I have not been responding because we just need some family time right now to figure things out. As soon as we figure out Ellie’s Next Chapter we will inform everyone.
The New Year always bring back memories of Jan 4th 2011 the Day Ellie was diagnosed with a Brain Tumor. She underwent more than 6 years of Chemotherapy and three brain surgeries. We where extremely blessed that the Summer of 2017 her tumor stopped growing and Ellie was able to go off Chemotherapy. It has been an amazing year and half of watching and seeing Ellie grow and enjoy life. She has since Graduated 8th Grade & began High School. Ellie had a MRI last Thursday and It is with great sadness that we received word on Friday that Ellie’s tumor has grown significantly. Her Nuero Oncologist is meeting with the Top Nuero Sergeant at Children’s to discuss options. We unfortunately do not know what the future holds and will not have any answers until January 9th. We decided to wait till closer to then to tell Ellie but as everything in our life goes, things don’t always work out as we would like. Ellie asked me the other night if I have heard from the doctor on how the scan was. When Ellie was younger it was easy to push it off and lie a little but now that she is 14 in High School I felt I had to tell her the truth. We really tried to put a positive spin on this tragic news but unfortunately you can only put so much positivity on this. I held back my tears as I told her that she would have to begin Chemotherapy once again. Her biggest concern is missing school and keeping up. My biggest concern is if she has to have brain surgery again, what does that mean? She was so young the first three brain surgeries and her brain could adapt. I worry about her bouncing back quickly. I am hoping and praying that we will not have to go down that path that just Chemotherapy will be the answer this time. I know god has a plan but I am hoping God has a plan for Ellie to live a full amazing life. Please keep Ellie in your prayers as 2019 will be a very challenging year for her. I pray every day that Ellie’s dream of going on Americas got Talent comes true and that she can follow her dream of being a singer. It would be awesome to have a glimmer of excitement in this very sad time.
Its been a long while since I have written but so many fantastic things have come about for Ellie this past year and half. Ellie has had a break from Chemotherapy, she has graduated Junior High and began High School. So hard to believe that my little six-year-old is already 14 and is an amazing beautiful young lady. The most amazing thing that happened in 2018 was Ellie Auditioned for America’s Got Talent in Detroit, MI. It was an amazing experience and I am hoping and praying daily that she makes it onto the show. She has an incredible voice and I couldn’t be prouder of her. I am going to try and post video of her singing for a voice recital. This is not what she auditioned with I want to save that one if she actually makes it on the show. But this is a fun Christmas one for you all.
By the way I will be posting a Ellie update tomorrow. Enjoy your New Years Eve and stay safe.
Ellie's Christmas Song is on the right of the webpage.
A mother with a battle ahead of her.