Life Inside Lurie Children's

The official blog of Ann & Robert H. Lurie Children's Hospital of Chicago.

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Mind Over Gray Matter- Lauren’s Story

June 2, 2016

By Michelle, Lauren’s mom

My daughter, Lauren, began experiencing headaches in August 2015.  She had a few minor issues with allergies so we chalked it up to that.  Then the ear pain started along with a swooshing sound in one of her ears that we couldn’t get to stop.  She told me it sounded like waves crashing in her ears.  She has always had an abundant supply of ear wax so we started using Debrox and attempted to flush it out with water.  We never really got too much out so thought it was just really packed in there.  She is a straight A student who is very diligent about her attendance at school and wouldn’t miss to see the doctor so I made an appointment with the ENT at Decatur Memorial Hospital the Monday after school was out for Christmas break – Dec. 21, 2015.  

Lauren was diagnosed on December 23, 2015 with a brain tumor (craniophrayngioma). Along with the tumor she has papilladema, swelling of the optic nerves due to increased intracranial pressure. We are very thankful for the NP at Decatur Memorial Hospital's ENT department who sent us for all the testing and referrals to a neurologist who ordered the MRI that found the tumor. We went into the MRI thinking it was just routine to rule anything out so it was quite a surprise when they told us she needed a CT scan and we couldn't leave the hospital. I'll never forget that day as long as I live.

I had several days over Christmas to do research.  The Monday after Christmas, December 28, I contacted two hospitals that had extensive experience with this type of tumor.  I spoke to the nicest person at Lurie Children’s who, after consulting with some doctors, suggested we come up.  We live in central Illinois and had just under a 3-hour drive which turned in to about 4 ½ due to the snowy weather.  We spent 3 days there and saw a team of about 25 doctors – neurosurgeons, neurologists, ophthalmologists, and endocrinologists.  Every single one of them was wonderful and so good about answering my million questions.  Her tumor cannot be removed as it is wrapped around the pituitary stalk.  She also had a cyst that was pressing on the hypothalamus which had been causing some problems that I hadn’t related to all of this before.

Since that stay, Lauren has had two other hospital stays at Lurie Children’s and undergone a lumbar puncture, draining of the cyst, 2 biopsies, first an Ommaya reservoir and now a VP shunt.  She is continuing to have headaches but the swooshing is gone after the last surgery when they implanted the shunt.  Most recently she was diagnosed with IGT, impaired glucose tolerance, which we hope will not turn in to diabetes.

We have been so impressed with the care we have received at Lurie Children’s.  Whether it be the nurses on floor 19, the people taking us back after surgery, the recovery nurses, Dr. Bowman, Dr. Schwarzstein, but most importantly, Dr. Tomita and Wendy.  I had read about Dr. Tomita prior to us going to Lurie Children’s and am so glad Lauren is in his care. Those two are top notch in our book!

Lauren has just begun Proton Radiation at the Chicago Proton Center and we are hopeful of the outcome. Throughout it all, we strive to live life as normal as possible all while realizing how fragile life is and being so thankful for all that we have.

Over the course of our hospital visits, we saw many children who were being treated for conditions worse than Lauren’s or who had been there for several weeks.  We talked with families who struggled with places to stay and heard from Wendy that some could use help with gas and food.  Lauren turned to me one night and said she really wanted to do something to help others as well as make others aware about brain tumors.  We planned an event that included a 2-mile walk, kids zone complete with inflatables, silent auction and raffle and finished with lunch.  It was a huge success.  All of the proceeds are going to be donated to Lurie Children’s for family assistance and brain tumor research.  To date, we have raised over $25,000 and are so thankful for all of the donors and event participants.  Lauren cannot wait to make the next trip to Lurie Children’s and make the donation. I am so proud of her and extremely thankful for Lurie Children’s.  

Click here to learn more about Lurie Children’s Pediatric Brain Tumor Program.

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Mind Over Gray Matter - Brannon’s Story

May 26, 2016

By Kristin, Brannon’s mom

Brannon made his mark in the world since the day he was born. He has a positive spirit and determination and when faced with a challenge where one might want to give up, he is known for his perseverance and to always give it “one more”.

Brannon had some medical challenges early on including food allergies that landed him in the ER at an early age, as well as sensory processing challenges and autoimmune encephalitis.  At the end of second grade, however, things seemed to be going very well for him.  As the summer went on, Brannon started to experience “occasional” headaches, vomiting and some balance issues.  A roller coaster aficionado, he was excited to finally ride the Goliath at Great America. We waited in line for what seemed like forever, as people started slowly dropping out due to being scared.  Not Brannon!   Then the announcement came that a storm was coming in and they might have to shut the ride down shortly.  Brannon generated such a crowd with his enthusiasm that people were rallying for him to get on the ride before it shut down.  We were the absolute last ones let on the ride. As we got to the top (the one time I opened my eyes) we saw lightning flash across the sky and a huge smile on Brannon’s face.  When the ride was over, his newly formed “fan club” was waiting to congratulate the “brave kid who rode in the lightning storm” with high fives.  Brannon always showed courage and determination. However, we noticed his balance was severely off after getting off the ride and that worried us.  

Going to many doctor appointments, we looked at all kinds of reasons for his strange symptoms but were not getting any answers.  One day, Brannon woke up vomiting, said his neck hurt and his head felt like it was “going to explode”.  He asked to go the hospital and when a child asks to go to a hospital, you know it must be serious.  I put the kids in the car, bypassed our local hospital and took him to a nearby trauma center.  They got his vomiting under control and were ready to discharge us.  I asked for further testing and was told to follow up with a GI doctor.  I then asked to watch him walk a line, because his balance was off, and that we were not leaving until we did a scan and had some answers.  Well, the doc showed concern after watching him walk and agreed to the scan.  What followed was something I will never forget.  The doctor came back with a helper to watch the kids while they “talked to mom.”  I knew it wasn’t good.

They sat me in a small room and said that my son had mass on his brain. The rest is a blur.  Eventually, family and friends came to our side as we learned more, that it didn’t “look good” and required immediate surgery. That was the longest 6+ hours of our life.  The neurosurgeon came out with the news that surgery went well.  When confirmed it was cancer, we started to ask around and cashed in every favor we had to find the absolute BEST place to have our son treated. Time and time again, the answer was the same- Dr. Stewart Goldman right in your own backyard at Lurie’s Children’s.  

I will never forget the first time we met Dr. Goldman.  Aside from our amazing neurosurgeon Dr. John Ruge, Dr. Goldman was the first doctor we met who gave us hope. He shook our hands and said he is looking forward to helping us beat this.  He is a straight shooter, but compassionate.  We also heard he had a great sense of humor- Brannon is still mulling that one over (kidding!).  We hit the ground running, helping Brannon to recover from Posterior Fossa Syndrome while learning to see, eat, talk and walk again.  While doing this, Brannon underwent 31 sessions of proton radiation therapy with chemo, then six rounds of aggressive chemo at Lurie’s.  While there were many challenges, we never lost hope. With the help of friends and family, an amazing community was formed to help us through.  Each month of treatment, we had a different “theme” for our inpatient stay such as Spongebob (we turned his hospital room into “Bikini Bottom”,) and Captain Underpants (everyone decorated or sent in silly underwear that we hung around the hospital room).  We even had “Flat Superbran,” similar to Flat Stanley, a paper cutout superhero of our son that people took pictures with around the world.  We decorated his room for his last inpatient chemo with Flat Superbran, also as a celebration since Brannon was turning nine that week, which “turning nine” was his only birthday wish. A heartbreaking reality when you have a child with cancer. As a matter of fact, Brannon was treated so well by the staff at the Proton Center and Lurie’s Children’s that he cried on his last day of chemo because he didn’t want it to end.  What a testament to the good folks that helped our son, especially Nurse Katie O’Connell and Dr. Stewart Goldman.  When Brannon was feeling better, he made a sign that said “I heart Dr. Goldman.” When Dr. Goldman jokingly said that he was so happy he would wear it wherever he went. Brannon challenged him to do so.  Our next few hospital visits, Dr. Goldman came into the room wearing that sign around his neck.

Brannon just celebrated “double digits” - his tenth birthday, and one year post ending chemotherapy with a clear scan.  While we revel in his recovery, we know this is a long, scary and uncertain road. He also now deals with hearing loss, attention/memory challenges, endocrine challenges, fine motor impairments, visual impairments, etc. Times have been very challenging as we assimilate into our new normal.  One thing that keeps Brannon going strong is his hero Anthony Rizzo. While it is still Brannon’s dream to meet him in person someday, Anthony sent Brannon a letter (after we reached out to him for inspiration) telling him not to give up and took a photo holding a poster that says “Stay Strong Brannon.” Recently, when Brannon had to have bloodwork done, his dad facetimed me because Brannon was feeling apprehensive and needed a pep talk.  I reminded him how Anthony Rizzo said to never give up and stay strong.  That put a smile on Brannon’s face and he agreed to go ahead with the blood draw.  

We could never have gotten this far without the help of friends, family and the A-M-A-Z-I-N-G staff at Lurie Children's.  As a matter of fact, at a recent clinic visit, I was joking to my husband while on the elevator that I saw two of the most important people that work at the hospital- the man who valets the car (many memories of urgent ER trips and valet putting us at ease etc) and Barbara, the woman who comes around the floors with coffee.  My husband joked saying “Of course, don’t forget the doctors and nurses here who save lives too.”  Another doctor on the elevator said with a smile, “No, she is right, those are two of the most important people here.”  Truly, it takes a village, and we are so glad that ours is at Lurie Children’s and their Pediatric Brain Tumor Program.  We are grateful for all of the dedicated doctors, nurses and staff, as well as the community of parents we have connected with along the way who are also fighting similar battles.  We continue to fight, not only for our son, but for those children who are also fighting or in honor of those who we remember fondly.

Thank you for reading our story.  Brannon’s story continues on at his Facebook page “The Superbran Chronicles”.  

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Mind Over Gray Mater - Abigail’s Story

In April of 2015 Blaine (Abigail’s mama), and I started to notice that our little baby girl who seemed to be advanced in every way started to act very different. One morning she woke up with her head tilted to the right. We thought maybe she slept wrong and caused her neck to be sore but after 2 days with no improvement we took her to the pediatrician. Abigail had a double ear infection. Doctor gave us an antibiotic and sent us on our way. After 2 weeks and multiple different antibiotics the ear infection finally went away but the head tilt did not. Blaine continued to call the doctor and discuss what to check next.  The pediatrician suggested maybe Abigail had developed torticollis and referred us to an orthopedic doctor who suggested physical therapy.

We followed the doctor’s advice and met with a physical therapist. After one session the therapist did not believe that Abigail had torticollis after all.  In the meantime Abigail had started to randomly vomit, became irritable and sleepy. Blaine started to obsess over finding out what was wrong and turned to Google. Googled “head tilt & vomiting” and the first thing to come up was brain tumor. Blaine’s motherly instinct was that there was something very wrong and I now felt the same. We took her to the pediatrician yet again and demanded that an MRI be done.

May 4th, 2015 at 7:30am Abigail had her MRI at Northwest Community Hospital and by 9am, the news was in…Our baby girl had a brain tumor. The doctors at Northwest Community had already been in contact with our pediatrician and put a plan in place. We were immediately transferred to Lurie Children’s via ambulance. We meet a team of doctors and neurosurgeons that would be taking care of Abigail and they reviewed Abigail’s MRI in detail. All is a little bit of a blur as it all happened so fast.

We were told the tumor was very large and blocking the flow of spinal fluid which was causing serious swelling in her head. The doctors were unsure on how much of the tumor they would be able to remove. All was much unknown until they could get in her head and see exactly what they were dealing with.  

The very next morning at 7am on the dot a team of 12 doctors & neurosurgeons came in for a very unexpected meeting. They advised us that Abigail’s surgery was first thing the next morning, followed by the ENT and a scope of Abigail’s vocal cords and esophagus to see the post-opt condition, followed by the Child Life services that prepped us on the conversation with Noah (our soon to be 3yr.) to understand. Noah came to visit and Child Life did a fantastic job using a story book with interactions for Noah to understand. Abigail lit up like a perfectly healthy child and started to act a little bit more like herself, ALL because of seeing her big brother, he is so loving and caring to her, it melts all hearts.

Abi was able to leave the room and floor to go to the Family Life Center and play with Noah and you would have thought they were at home playing in Noah’s room as they love to do together.  Soon after we had a rough run in with the side effects of the steroid treatment being used to reduce the brain swelling, a bad temperament, added to not being able to feed because of needed second MRI, a leaky IV, and just tired of being hooked up to several machines and stuck in the room. I think Abigail knew that something was wrong. She could tell by the way everyone was looking at her. After Abigail’s third MRI in just 24 hours, she recovered quickly and we went back to her room to prep for the next day’s surgery of 6-8 hours.

Letting go of Abigail the next morning as she was taken to the operating room was what we thought was the hardest part of this journey. Quickly the 7 hours of waiting for the surgery to be completed became what was thought to be the most difficult. After the surgery was completed, we met with Dr. Tomita, her neurosurgeon, who brought us to tears with news that he and the team considered Abigail’s surgery a success with a full resection giving her a great chance of fighting this cancer. We were so excited to go see our baby girl. Here came the hardest thing for us, seeing our little 11 month girl in the PICU connected to all the machines, ventilated, bandaged up, and swollen. After 12 days in the PICU, which felt like months Abigail had made enough progress to be moved to the 19th floor to continue her recovery. Over the next two weeks we worked with many doctors and therapists to get Abigail off the many steroids, and machines that were restricting her to bed, with a goal of getting us all home together by Abigail’s first birthday. The nurses and our family did a great job of putting together a 3rd birthday party for Noah in the family waiting room, a memory of a birthday no one could image to have.  Abigail being the feisty fighting redhead she is amazed all and we were home for her birthday.

After a month home allowing Abigail and the family to recover we were back to the hospital to start the 18 month chemotherapy treatments. This of course brought us to another “worst” feeling, seeing our beautiful redhead’s hair all fall away. The illness caused by the chemo that many of us parents know all know too well, and how it changes our children and loved ones. As bad as it seemed Abigail fought through it and seemed to do well, until the fall when we had our first set back. One of the chemo meds had a side effect of causing nerve paresis, with her right vocal cord/face paresis caused from the surgery this took a toll on Abigail and while waking up from a procedure that required her to be asleep she was unable to breath on her own and she had to be quickly ventilated. An image we hoped, and prayed we would never see again, baby girl heavily sedated, restricted movement and on a ventilator. After a week in the PICU Abigail finally recovered and that drug was dropped from her protocol. 

We are now almost a year in and Abigail is doing great.  She has several side effects but overall she is a very energetic toddler that is very feisty and has no problem letting you know what she wants. Abigail and her brother are still two peas in a pod and love to do everything together!

Click here to learn more about Lurie Children’s Pediatric Brain Tumor Program.

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A line drive to the head almost costs a teenager his life

May 24, 2016

Tinley Park high school pitcher Tyler Coleman, 16, took to the mound against his school’s rival Lockport High School. It was in the fourth inning when Tyler threw a fast ball to the batter. After that, all he remembers is seeing the seams of the baseball.

“He didn’t know what hit him,” said Ken Coleman, Tyler’s dad, who rushed to the mound to help his son. “He was covering his eye and walking around in a daze. We called the ambulance and he was taken to Silver Cross Hospital in Joliet. Because of the severity of his injuries, they transported him to Lurie Children’s.”

By the time he arrived at Lurie Children’s Emergency Department, the pressure in his brain was rapidly escalating and he was immediately brought into surgery. “The ball hit him right on his frontal lobe,” said Tadanori Tomita, MD, head of the Division of Neurosurgery and one of the top neurosurgeons in the country. “He sustained a large epidural hematoma, severe bruising of the brain, frontal sinus and facial fractures.”

Although the injury was in a critical location, Dr. Tomita was able to access Tyler’s brain through a minimally invasive procedure that involved an incision along his eyebrow, avoiding a full craniotomy of the skull.

“Because of the severity of the injury, we were told that if we hadn’t gotten him into surgery that night we could have lost our son,” said Keri Coleman, Tyler’s mom. “Dr. Tomita and the staff at Lurie Children’s saved our son’s life.”

A week after the traumatic brain injury, Tyler – who plays for Victor J. Andrew High School - has made an amazing recovery. He was discharged from Lurie Children’s but not before receiving a surprise call from Chicago White Sox pitcher Chris Sale, who reached out to the 6’1 left-handed pitcher when he heard about the accident.

“When people told me I was too tall to be a pitcher, I’d say, ’Yeah, well look at Chris Sale. He’s tall and left-handed like me.’ So when he called me at the hospital, I couldn’t believe it. He told me to stay strong, sent me a White Sox bag filled with autographed souvenirs and invited me to a game. Who would ever have thought I’d get to meet Chris Sale at the Cell. It’s awesome. But for now, I just want to get back to my team and pitch again,” said Tyler.

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Mind Over Gray Matter- Mia’s Story

May 24, 2016

By Lisa, Mia’s mom

Mia was diagnosed with a brain tumor at two years old in November 2011. Due to the location it is inoperable and she has been on and off chemotherapy ever since. She is currently in treatment and we are able to administer it at home which means more days of being a regular kid.  

Although Mia is quite small for her age she has quite a big personality. She is sassy, sweet, loves to cuddle and loves being with her friends and family and really enjoys school. She has rocked full day Kindergarten this year. We like to call Mia our small but mighty warrior.  

Mia does not like needles but getting to see all of her doctors and nurse and friends at Lurie Children’s helps to make up for the sometimes yucky but important things that come with the care there. We are so grateful to everyone that has been a part of Mia's care there- big thank you's to all especially Dr Fangusaro, Dr. Alden, Nurses Katie, Wendy, Ashley and all the Ambulatory Infusion Center staff and everyone in the Neruo-Oncology and Neurosurgery departments.  

From the early days of diagnosis we committed to keeping things as "normal" as possible not only for Mia but especially for her big sister Rachel who was in kindergarten at the time. We would not have been able to do this without the love and support from our parents, family, friends, community and everyone at Lurie.  We also want to acknowledge just a few organizations that have helped to make this new normal a happier place for our family.... Cancer Kiss My Cooley, Bear Necessities ,12 Oaks Foundation , MaxLove Project and Children's Oncology Services .  

Mia recently had surgery to help allow more room for her spinal fluid to flow correctly due to tumor causing things to shift around in her brain a bit over the years.  She had to take it easy for a few weeks but just started back at dance class and her horse riding lessons. We recently learned that Mia has a gene duplication that opens up more targeted therapies for her down the road.  Mia (now 6) and Rachel (now 10) are both looking forward to the end of the school year and all that summer brings!  

Click here to learn more about Lurie Children’s Pediatric Brain Tumor Program. 

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Mind Over Gray Matter- Chase’s Story

May 24, 2016

By Ellie, Chase’s mom

Below is an excerpt from Ellie’s book about Chase’s cancer journey, Chase Away Cancer. 

A few hours later, as the sun rose over the lake, the calm atmosphere in the room became energized. Nurses moved quickly around Chase’s bed and the room: typing things into the computer, unwrapping his head, removing tubes and cords, trying to remove all the residual adhesive on his skin with warm washcloths. We were going forward into a great unknown and it produced a raw feeling of powerlessness in the pit of my stomach that only seemed relieved by movement. I wonder if this is why people pace when they’re nervous.

Bob and I worked together with Chase - distracting him from his hunger pangs, playing with him, talking to him - but we hardly spoke to each other, saying little more than “How are you doing?” answered by “Fine.” We were in agreement on the course of action and our love for Chase and that was all that we had the capacity to handle. The days in which we’d be able to articulate our feelings and grieve over the moments we were living were still weeks away. Right now, we focused on breathing. Somehow, the preparation for surgery felt like preparing for death.

We were escorted from the ICU to the surgical floor. In the presurgical area, people in mint and powder blue scrubs came in one and after another and introduced themselves while they watched Chase and compared him to their notes and charts, asking questions we all already knew the answers to.

The biggest question of the morning was whether Chase would need a mild sedative to calm him and help him forget that he was being separated from us. Two-year-olds rarely go with people they don’t know, and Chase was no exception. It was a rule that we had taught all of our children to heed. How would he react? We would not be allowed to follow him into the operating room, not even to make him comfortable.

At that moment, a short, larger-than-life personality burst in, strawberry blonde hair with just a hint of gray sticking out from under his surgical cap. His name tag said he was “Dr. Roth”, and his loud, jovial voice greeted us, or more specifically, Chase. Dr. Roth’s eyes stayed on Chase as he introduced himself as the anesthesiologist and when Chase backed away, the man folded himself down so his burly elbows rested on the edge of the bed.

“Hey, Chase,” he said, his eyes twinkling, ”Would you like to hear about the time I put a gorilla to sleep? A real, live gorilla! It’s true!” Suddenly, we were all transported to a zoo by his words. The small room we were in disappeared as we were pulled into the story of this anesthesiologist, his encounter with a large primate, and the crazy hope that the “sleeping medicine” would keep the gorilla from waking up. “After all, a gorilla can be very cranky when it wakes up in a strange place.”

Reaching into his lab coat, Dr. Roth pulled out an anesthesia mask and said to Chase, “Do you like strawberries?” He casually tossed the mask onto the bed next to Chase.

“Go ahead,” he said, “play with it. Doesn’t it smell like strawberries? Have fun. I’ll be back shortly.”

Chase only had a few cords attached to him at that moment so we sat on the bed enjoying the opportunity to hug and be close to him. I kissed his head despite the goo from the electrodes that hadn’t been totally washed off and touched his cheeks that were still too rosy from all the steroids. We played with the mask and giggled together because we were still thinking about the zoo and not about surgery. Chase held the mask up, sniffed it, made a face, and then passed it to me. Sliding my glasses onto my head, I put the mask to my face as Chase, with thumb in his mouth, giggled and Bob grabbed his phone for a picture.

That was the final moment captured before we said good-bye. What do you say to someone in that moment when nobody knows what will be coming next? I don’t know. I’ve stood there, breathed there, and I still don’t know. We talked about the sleep that was coming and taking out the big, bad ball, and other little things that you say just to fill time. Only one thing remains excruciatingly clear to me from those moments: I don’t think anyone is ever fully ready to say good-bye. Separation is painful, even if the person lived a full, long life; and I don’t believe we were ever created for separation.

The red-haired doctor was back. This time, he spoke to us over Chase’s head and said that he had something to induce sleep and lessen Chase’s anxiety about leaving us, but he wasn’t sure if Chase would need it. He told us to kiss Chase and say our words while he was still there.

Bending over, I kissed his smooth forehead, wanting to remember every second of this time. “I love you, sweet boy. I love you so much.” Bob followed, kissing and hugging his son, while I watched silently. There were so many things that we wanted to say, deep and important things, but we knew we had to keep it lighthearted. So Bob and I kissed him and loved on him as if we were tucking him into bed for the night. For Chase, this was nothing more than a magic nap to remove that bad baseball. I believe Dr. Roth could sense how lost we felt because as we finished, he quickly turned to Chase and invited him to kick his outstretched hand as hard as he could—the perfect distraction.

Chase, who’d spent nearly two days being told not to kick doctors shrieked in glee and obliged, kicking the large hand. Dr. Roth grunted in feigned discomfort, saying, “Wow, you’re so strong! Do it again!” This routine continued for a moment or two as orderlies quietly entered, unlocked the wheels on the bed, and began to move it silently forward. The orderlies looked ahead as the doctor walked backwards, one hand on the rail of the bed, one hand outstretched against Chase’s foot. And that tiny boy on the bed stayed focused on the doctor’s antics and continued to kick with all his might. As they passed through the doors leading to the operation theater, the anesthesiologist never looked up, but continued in a sing-song voice, speaking to Chase even as his words were meant for us: “We’re just fine. We’re going to be just fine now. And we’ll be back soon.”

And with that, the sound of my precious boy’s laughter faded with the sound of rolling wheels down the hall, and we were left in the empty room of baseballs, gorillas, and wishing for just one more minute.

Click here to learn more about Lurie Children’s Pediatric Brain Tumor Program. 

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Mind Over Gray Matter- Patrick’s Story

May 17, 2016

By Tom, Patrick’s dad

If you ever see people around the hospital wearing tee shirts, sweatshirts or jackets with a silly logo that looks like a leprechaun, you might wonder what does that represent? Although most people associate the color gray with brain tumor awareness, our group is often seen wearing green with gray. 

In 2011 Patrick McNamara, a long term patient at Children’s Memorial Hospital (now Lurie Children’s) participated in the first ever St. Baldrick’s Day event held at his school St. Barnabas in Chicago. The event was planned in his honor and the whole school participated. He was very sick at the time having just come home from the hospital the night before after a lengthy stay. 

As sick as he was, he still had a great sense of humor and was very excited about the event. He came down from his room dressed in a bright green tee shirt, a bow tie, shamrock sunglasses, and an oversized leprechaun hat. 

The enthusiasm at the school was on overdrive. He later told a teacher it was the best day of his life. Patrick died seven months later from the ravages of the brain tumors he battled for 11 years. 

The image of Patrick dressed up on this day became the inspiration for our foundation’s logo. Pat Mac’s Pack was founded in honor of Patrick to help fund pediatric brain tumor research at Lurie Children’s and to financially assist patients and their families fighting this deadly disease. You can visit our website for more information: patmacspack.org

Click here to learn more about Lurie Children’s Pediatric Brain Tumor Program. 

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Mind Over Gray Matter- Lyle’s Story

May 17, 2016

By Peter, Lyle’s dad

When Lyle was about 7 months old, the vomiting started.

Lyle was a completely normal boy up to that point. He was plump, full of life, smart, happy, and was just getting started with eating real foods.  

The first time Lyle vomited, we had so many questions racing through out heads.  Was he sick? Was it just a bad batch of food? Was it just some sort of fluke? Over the next 6 months or so, we would become all too familiar with the tense uncertainty we felt in those moments following his first vomit.

Lyle continued to vomit from time to time, and we could not figure out why. Some days were better than others. Some weeks were better than others. There didn’t seem to be a pattern to it. We were so frustrated and confused.

We had many friends whose children had food allergies, so we decided to try some methods to determine if an allergy was what was causing Lyle to throw up.  We painstakingly eliminated certain foods one at a time and took down extremely detailed logs of what he ate.  A few times he did not vomit for several days after we had eliminated a certain food, and we thought perhaps we had discovered the solution.  Each time we would get so happy and hopeful that perhaps this would be the end of his vomiting – problem solved.

And then he would vomit and we would be back to the drawing board.

We had been doing food allergy trials for a few months when our pediatrician became increasingly concerned with Lyle’s lack of weight gain. Up until the vomiting started, his weight gain was fantastically normal and healthy.  Since the vomiting began, he had gained no weight at all.

Lyle’s pediatrician began accusing us of not feeding Lyle enough and believed that we were actually the cause of his weight loss. We were devastated. The pediatrician recommended Lyle to participate in an inpatient-feeding trail at a nearby hospital where his feeding habits, weight, and vomiting could be closely observed and studied by hospital staff.  Our pediatrician was confident with the right experts on the case, Lyle would rapidly gain weight and stop vomiting in no time.  It seemed to him that we just needed training on how to properly feed our child.

The trial was an unbelievably frustrating experience.  The specialists tried formula after formula to try and find something Lyle would tolerate, and nothing seemed to help at all.  The formulas were so repulsive he would not even allow the bottles near his mouth after tasting them.  Lyle’s mother was not allowed to breastfeed him so the doctors could rule out any unknown food allergies being introduced through his mother’s diet. He actually lost weight the first several days in the hospital.  It was so disappointing.

Eventually the doctors felt it was necessary for medical intervention to get Lyle the calories he needed to gain weight.  They decided to insert an NG-tube into Lyle’s nose so they could pump food directly into his stomach. Over the next several days, Lyle started to gain a little weight.  We were going to be discharged, but first the hospital policy required us, his parents, to remove the NG-tube and then put it back in place.  If any parent has had the familiarity with an NG-tube, they understand it is a horrific experience to put their child through.  

The NG-tube was horrible, but necessary.  Lyle did start to gain some weight, but his vomiting was not getting any better.  He began associating eating solids with vomiting, so he zealously refused any and all attempts to feed him anything besides water by mouth.  The doctors ran more tests on his GI system to see if there were any physical anomalies that were causing him to vomit, but everything kept coming back normal.  

In February of 2015, we had to bring Lyle to the hospital due to a particularly bad stretch of vomiting which had left him badly dehydrated, lethargic, and dangerously thin.  He had gained barely any weight since getting the NG-tube nearly 3 months prior, but thankfully his length had continued to grow.  This had the unfortunate effect of making Lyle look skinnier and skinnier.  

During this hospital stay, the doctors informed us that they literally could not think of another test to run on Lyle that they hadn’t run before, from a GI perspective.  They were out of ideas.

As a last-ditch effort, the doctors decided to put Lyle through an MRI of his head to see if anything could be wrong inside his brain.

“We don’t expect to find anything”, they said.  “You’ll probably go home this afternoon.”

A child Lyle’s size & age has to be under general anesthesia and have a breathing tube inserted in order to undergo an MRI.  It’s no small procedure, and that’s why the doctors had not done it up to this point.  However, Lyle was not gaining weight, was not getting better, and they were out of ideas. So we decided to go forward with it.

It took several hours for the doctors to get back to us with the results.

I will never forget the moment they entered the room to give us the news. Their faces were grim, and solemn.  I will never forget the caring, compassionate manner in which Dr. Allan Pratt (Lyle’s GI doctor) communicated to us.

He calmly informed us:

“We got the results back, and they are not normal.”  He paused.  We were confused and said nothing.

“There’s a tumor there.  A brain tumor.”

My world turned upside down.  I was dizzy.  I was in shock.  I asked if he was sure.  He said he was sure and had spent the last several hours consulting with the experts at Lurie Children’s to be absolutely certain of the findings.

We held Lyle and cried.  We couldn’t believe it.  This is the kind of thing you see on Facebook or read about.  This always happens to some poor unknown child.  It doesn’t happen to your child.

The next few hours were kind of a blur.  We saw the MRI images.  We listened as the doctors explained that the tumor was pressing against the exact part of the brain responsible for nausea and vomiting.  The tumor was essentially causing his brain to trigger vomiting unnecessarily.

The tumor was discovered at a satellite branch of Lurie Children’s within Central DuPage Hospital in Winfield.  Lyle was transported via ambulance to Chicago, where preparations were made for him to undergo surgery to try and remove the tumor.

At Lurie Children’s, we encountered incredible amounts of compassion, support, and love from all the nurses, doctors, and family members of other patients.  All the hospital staff assured us that the pediatric neurosurgeon who would operate on Lyle was unparalleled – Dr. Tomita.  

After Lyle’s surgery was finished, Dr. Tomita came to visit us and shared some good news – they were able to successfully remove 75-80% of the tumor, and preliminary results appeared to indicate the tumor was benign (non-aggressive). It appeared to be a low-grade glioma.

It was during this time that we learned how resilient children are. After the surgery, Lyle rapidly improved and was practically back to normal within a few days of his surgery.  He even began to eat solid food. Not only did he just eat the food before him, he devoured it! It was as if he finally understood why everyone else kept putting these weird substances into their mouths. We were amazed at his tenacity.

We were discharged from the hospital a week after surgery. However, the vomiting didn’t decrease.  Neither did the nausea.  Many days were so bad that he could do nothing but lie on the couch. His sudden love of food was very short lived. It became abundantly clear that Lyle’s feeding issues were going to be long term, so we eventually agreed to remove Lyle’s NG-tube and have surgery to have a G-tube placed instead.

Over the next 11 months, Dr. Rishi Lulla of Lurie Children’s monitored Lyle’s tumor every 3 months and it was classified as stable; however, the nausea and vomiting did not subside. During this time, Lyle was in and out of the hospital several times due to severe dehydration caused by excessive vomiting.

Lyle was so underweight at the end of 2015 that his doctors feared he might suffer permanent developmental damage if drastic measures were not taken to increase his weight.  He was skin and bones.  His spine showed through his back and his rib cage was clearly visible from the front. He just couldn’t keep enough nutrition down to gain weight.

As a team we decided to put him on IV nutrition to help him gain weight. Every night a large bag of fluids, vitamins, and lipids (fats) was dispensed directly into his blood stream. Thankfully, within 4 months, Lyle had gained enough weight to decrease and eventually eliminate the IV nutrition.

In December 2015, after consulting other pediatric oncologists from across the country, we made the decision to begin chemotherapy.  Lyle would endure 13 monthly rounds of chemotherapy, ending his chemotherapy journey in February 2017.  

He has already braved 5 rounds, with little to show except a weakened immune system, allowing the occasional cold to emerge. Thankfully, Lyle even still has his full head of thick, crazy blonde hair.

Over these past few months, the chemotherapy seems to have had a positive impact, as Lyle’s vomiting has markedly decreased.  In addition,  the results of his first MRI since chemotherapy began have been very encouraging, as they showed that the tumor is shrinking! God is so good.

Lyle’s year of chemo brings a lot of uncertainty and questions. Will the chemotherapy continue to shrink the tumor? Will it completely destroy the tumor? Will the nausea and vomiting ever truly go away? Will Lyle stay healthy as he goes through over a year of chemotherapy? Will there be long-term side effects? Will he ever eat food by mouth?

We believe God has surrounded Lyle with incredible care, incredible people, and incredible love.  Today Lyle is walking all over the house, playing with his little sister, and besides occasionally vomiting, is a very happy and intelligent little boy.  He still won’t eat food by mouth for fear he will vomit, but we are hopeful and working with therapists to overcome his difficulty.

Our experience at Lurie Children’s Hospital in Chicago has been a total Godsend.  All the staff has been incredible and Lyle doesn’t seem to mind going there at all. Last time he even got to meet Anthony Rizzo, the 1st baseman for the Chicago Cubs!  We are extremely grateful for the love and support of so many awesome people who have held us, prayed for us, cried with us, and sometimes carried us through this journey.  We could not do it alone.

Thanks for reading, and God bless you all!

[luriechildrens]

An Accidental Inspiration

May 12, 2016

“What made you want to become a nurse?” Everyone has that one person or for some many people that inspire them professionally or personally. For Jossyln McKenna, it was Lurie Children’s Transport Team Nurse Craig LaRusso, MA, BSN, RN, C-NPT. In honor of Nurses Week, we share with you recent emails between Josslyn’s mom, Heather, and Craig that highlight that moment of inspiration.

 Hello –

I am sure you have had so many patients over the years, so not sure if you will remember my daughter, Josslyn McKenna. She was hit by a car in New Lenox, IL only a few blocks from our house 10 years ago. The car was going 50 mph and she flew 38 feet. She broke her hip in 3 places, skull fracture in 3 places, bleeding on the brain for several hours, few broken vertebrae, and lots of internal bleeding from the hip…the list goes on.  But she made a full recovery. Thanks in part for your help and getting her safely transported from Silver Cross in Joliet to Children’s Memorial in Chicago. She spent 13 days in ICU and came out of the hospital after 14 days on crutches. She was in 8th grade. I am attaching her 8th grade dance picture that we sent to you only a few weeks after she got out of hospital.

We also took picture for you with her before she left hospital for you to put on your “wall of fame.”  She is doing great and became a mom when she was only 19.  My granddaughter is a beautiful 5 year old now and Josslyn is 24.  She will graduate from nursing school in August from Chamberlain Nursing School in Tinley Park! You were one of the nurses that inspired her in her career! She has no family at all in the medical field and has really paved her own way and I couldn’t be prouder of her!

Just wanted to THANK YOU again for being in the field that you are in and dedicated your life to helping people and inspire people like my daughter at a very young age. 

Thank you,

Heather

  Hi Heather,

I am truly overwhelmed by your email. Couldn’t get through it without choking up. Of course I remember Josslyn and I still have the photo that you sent me. I cannot tell you what it means to me that you thought to send this note and picture.  Every now and then, I hear from a family of a child that I transported and it reminds me all over again why I do what I do. It is truly a privilege and a blessing from God.  WOW, she is 24! That means I’m really old! And a nurse and a mom...amazing. You must be so proud.  Please give her all my love and who knows maybe she’ll come work at Lurie Children’s someday. You for sure made my week…forget that…my month. Thank you so much. So kind and thoughtful. Thanks again and blessings on you and your family!

Craig

[luriechildrens]

Mind Over Gray Matter- Ross’ Story

May 13, 2016

By Ross’ Family

July 3, 2009 our family received that devastating phone call that the MRI revealed a brain tumor. For the next 1,411 days, Ross and his amazing team at Lurie Children’s gave the battle everything they had, not leaving any option unexplored. Surgeries, chemotherapy, radiation, stem cell replacement were all in the arsenal. Drs. Fangusaro and DiPatri were amazing guardians of Ross’ life. Ross & our family were completely confident that everything possible was being offered to Ross.  

On February 5th, 2013 the second devastating call came, there is nothing more we can offer to save Ross’ life.

While both of these paragraphs are deeply sad, it is this that Ross wanted us to see in his life. He never quit. He never lost his joy. He never wasted one day in the difficulty of this random, unfair, brutal diagnosis. Ross never quit playing hockey, going to school, working out with a trainer, playing with his buddies, having family time, and always with his signature grin. Pediatric brain cancer can and does take a lot of things from us, but it does not take everything!

When told that there was nothing left for us to do, Ross did not cry, he simply said to our family “thank you, I know you’ve done everything you can. Please don’t let another child go through what I’ve been through.” Those few words remains the most life-changing moment for us. We made a promise. Upon Ross’ passing May 13, 2013, that promise helped us focus on what we knew we had to do.

In Ross’ memory, we work tirelessly to end pediatric brain cancer. R33M is proud to focus our time on fundraising and raising awareness all for pediatric brain cancer research. Our hope is that you are inspired to join R33M or any work supporting pediatric brain cancer research. 13 children every day are diagnosed with a brain tumor. That must stop. The treatments and therapy must improve.  We need to save these lives. We promised. We will.

[luriechildrens]

On the Table- Child Health Policy

May 11, 2016

By Susan Cartland

On Tuesday, May 10, Lurie Children’s participated in two On the Table 2016 discussions. These discussions center on issues that don’t have an easy fix. One of the sessions the hospital hosted was a discussion with parents of medically-fragile children on child health policy. Below is one mom’s perspective. 

When was the last time anyone had an inspiring conversation about special needs children in the context of public policy, healthcare, education and in community? Most discussions- whether they are with a parent, provider, administrator or otherwise- bemoan how these systems are insufficient for children with disabilities or mental health problems.  The gist is, there's never enough resources to go around.

However, I just participated in an "On the Table" luncheon, a forum facilitated by Becky Levin of Lurie Children’s, where parents and providers shared views on child health policy: what's working, what's not, and what we would like the future to look like for special needs children and (let's face it) ourselves, the caretakers. It was a comfortable setting, with a willing group and committed facilitator. Any suggestion or thought was, true to the name, on the table.  We even got to dream a bit!

Lurie Children’s has been an active part of our family since my son Ray was born, two months premature with a mild brain bleed. Our neurologist and pediatrician suggested that we watch and wait, which we did until six months later the classic symptoms of cerebral palsy (CP) emerged: fisting with his right hand, lopsided crawling, unable to sit straight or roll to his left.  The formal diagnoses of CP came just before his first birthday, and the rest is history...or really the beginning of our journey, and the ongoing cycle of highs and lows with lots of plateaus in between. That is how I was invited to this special forum.

As you might expect here, there was an abundance of frustration with insurance companies, navigating the education system and the lack of community family support. While this was a group who persevered to find adequate resources for their children, we all agreed it could be easier, especially for children on Medicaid or in low income households.  

My son can attend therapy appointments every week, because my boss is willing to look the other way when I come in late or leave early from work. How can we help parents who work on the clock, and lose several hours of wages for every appointment...or skip appointments, because they can't afford to lose those wages? Could policy help level the playing field?

We all agreed that it would be great to have service coordinators that extended beyond Early Intervention (EI). Once a child turns 3, parents themselves become the coordinators, having to synthesize a barrage of information from a range of well-intended, sometimes inconsistent, providers. Even in early adulthood, a service coordinator could assist parents as their kids transition to more independent living. It's so hard to understand what is available between healthcare, schools and community support. Furthermore, could Lurie Children’s post these resources on its site? It'd be great to have simpler way to find information.

It's hard to access mental healthcare and evaluations, which is mystifying to parents of children who suffer in this area. Why is it different from any other medical concern? How can we improve awareness and coverage?

Regarding community support, it would be great to bring parents out of isolation and into groups. There is no reason to walk these paths alone. How can we foster networks? And could we show some love for special needs children by creating a buddy system within the community? Could an older child, able-bodied or not, be a big brother or sister to a child with special needs?  One of the largest concerns of any parent is, will my child be loved and accepted for who they are, exactly as they are?  What else can we do to foster positive relationships in the larger community?

Well, those are my take-aways from our invigorating discussion. There are more questions than answers, but the questions can point us in the right direction. I'm grateful to have been part of "On the Table."

[luriechildrens]

Mind Over Gray Matter- Dylan’s Story

May 9, 2016

By Laurie, Dylan’s Mom 

Life seemed perfect. In March 2012, we welcomed our fourth baby. Our family was now complete and we couldn't have felt more blessed, two healthy girls and two healthy boys. I vividly remembering through prayer thanking God for this life and all his blessings. Little did we know then what was ahead for our new family of six, and how quickly everything would change.

Dylan, who was 6 years old at the time, went for his routine eye exam, his eye doctor discovered his optic nerve looked swollen. She explained that sometimes in kids they develop calcium deposits that make the optic nerve look swollen when in fact it's not. She wanted to do another test to confirm it was just that. I still to this day have no idea why because Dylan was active, healthy and showing no symptoms, but the word brain tumor rolled out of my mouth. flatly asked her if she was thinking he had a brain tumor. She told me it would be rare but yes she certainly had to rule that out. The next test did not show any calcium build up, so she insisted the next step would be an MRI of the brain.

Something deep inside me felt like something was wrong, I tried so hard to ignore it but she insisted and said this scan was necessary. He rocked the MRI and we sat there waiting for results. The wait seemed like forever, and then they finally said they had our doctor on the phone. My heart was racing and I could barely feel my legs as I listened and heard the words, brain tumor, possibly medulloblastoma, possibly brain surgery tonight and Lurie's Children’s Transport Team was coming to pick us up...and just like that our ordinary day changed and so did life as we once knew it.

We kept looking at our seemingly healthy, smart and active 6-year-old and nothing made sense. I remember trying to cry but my body was in such a state of shock that I couldn't. I remember standing there with my husband, Chris, my parents and the baby as they quickly got Dylan ready for transport. Our entire world was turned upside down and this was the beginning of Dylan's journey. Dylan looked at me during our ambulance ride to Lurie Children’s and said, "Isn't this crazy, all because of my eye doctor appointment." It sure is buddy.

Little did we know Lurie Children’s would become our second home and all the amazing people inside would become our lifeline of hope and forever be a part of our family, our Lurie's Children’s family. Two days later July 19, 2012 the amazing Dr. DiPatri performed a full resection of Dylan's tumor. It was the longest 9 hours of our life as we anxiously awaited updates from the operating room (OR) through Wendy. Wendy calmly and lovingly guided us through it all, what was happening in the OR, what we could expect when he woke up and long term as well. Dr. DiPatri confirmed our worst fears. The tumor was in fact cancer. Medulloblastoma was the name of the beast that tried to take our sweet Dylan.

After the tears, sadness and grieving all that cancer would take from Dylan, we wiped our eyes and went into fight mode. With the encouragement from the entire neuro-oncology team we decided we would fight and we would win. Dylan's recovery overall went extremely well. He suffered cerebellum mutism and didn't speak for almost two weeks. We longed to hear his sweet words again, and when we finally did, it was the most beautiful thing for our ears and hearts. After 10 days in the hospital, we were all home and under one roof again. It felt strange to be home at first, everything was so different. It was like walking back into our old life. I laugh now thinking of what we used to think was stressful!

Dylan underwent 6 weeks of daily radiation to the brain and spine, followed by 9 cycles of inpatient chemo. It was quite the juggling act, managing life with four kids and now throwing cancer into the mix. With time we adjusted into our new normal, with the help of countless amazing people that helped keep us above water. It was the worst time of our lives, yet so beautiful. We learned what really matters, we learned not to sweat the small things and that each day is a gift!

This July will be mark 4 years from Dylan's diagnosis and I'm blessed to say he's doing amazing! He's 10 years old now and finishing up 4th grade! He never really got the memo that he had cancer. He’s lived, enjoyed and will never let cancer win! We still go back every four months for scans and clinic. God willing he will move to 6 months this fall as he transitions to survivor clinic. We are forever grateful for everyone at Lurie Children’s. Special thanks to Dr. Goldman, Dr. DiPatri, Katie O'Connell, and Wendy for the never ending love, support and providing hope to us in our darkest days. You all are such a gift to families like us! Don't forget to go gray this May and support all the Warriors!

[luriechildrens]

Promoting mental health and resilience in youth

May 5, 2016

The recently launched Center for Childhood Resilience, housed at Lurie Children’s, is working to address mental health needs from a public health perspective.

“We focus on helping people who work with youth better understand and use prevention strategies, early identification and clinical interventions that we know really work,” explains the Center’s Director, Colleen Cicchetti, PhD. “The primary goal is to expand the potential of these adults to promote mental health and wellness in the young people they are serving.

On average, only 25 percent of children who require mental health services receive help. This is a major problem in our country and in Chicago in particular. For over a decade, Cicchetti and her colleagues have been working hard to find ways to connect children and adolescents with needed mental health services, ensure providers are using evidence-based programming, and identify new ways to address emerging mental health needs. The Center for Childhood Resilience (CCR) will enable them to take their work to a new level and ultimately help more young people.

The Center’s School Mental Health Team, including Tara Gill, PhD, Sybil Dunlap, LCSW, and Erica Badie, LSW, trains multidisciplinary teams in schools to identify mental health issues and connect students with interventions and supports available at school and in their communities. To date, they have helped Chicago Public Schools build these support teams in more than 90 schools.

The Center is also leading work to inform educators, mental health providers, clinicians and community members on the impact of trauma, promote healing and resiliency and build trauma sensitive environments. This year, the Center’s trauma training has reached more than 1000 professionals in CPS and mental health providers across the state.

The Center’s team members, including Tali Raviv, PhD, and Rebecca Ford-Paz, PhD, have unique expertise in the evaluation of mental health programming. They are currently evaluating the implementation of several specific programs that have great potential to help young people.

The Center is committed to training the next generation of mental health and pediatric professionals as well. “We offer current psychiatric residents and psychology fellows an opportunity to be immersed in community-based work and the public health approach to mental health services,” says Cicchetti. “We plan to expand our training focus to reach primary health providers and graduate trainees in psychology and social work.”  Recently, Claire Coyne, PhD, and Cicchetti led a Trauma Workshop for 30 Lurie Children’s pediatric residents to recognize the impact of trauma and create trauma sensitive pediatric settings.

Another important goal for the Center is to lead advocacy and policy work so that lawmakers and community leaders have the information they need to make good decisions about behavioral health and youth services. Cicchetti co-chairs several city and statewide committees trying to tackle these issues.

The Center for Childhood Resilience was launched with the generous support from the Steans family. Additional philanthropic partners include Project 375, Polk Bros. Foundation, Get IN Chicago, and Illinois Children’s Healthcare Foundation.

[luriechildrens]

Mind Over Gray Matter- Max’s Story

May 5, 2016

By Leanne, Max’s mom

Max had just started Kindergarten in the fall of 2008 and was loving it.  He was learning how to read and was doing math at a first grade level.  His favorite part of the day was the social part-lunch and recess! In October, we noticed Max’s left eye began to turn in and he was having to turn his head to compensate and see well. After seeing vision specialists, we were told to seek the advice of a neurologist. After jumping through a few hoops, we ended up at Chicago Children’s Memorial (now Ann & Robert H. Lurie Children’s Hospital of Chicago) with a diagnosis...brain tumor.  Not only was it a brain tumor, but the worst kind-Diffuse Intrinsic Pontine Glioma (DIPG). One with no treatment, no cure and no possibility of removal of the tumor. His prognosis, with radiation, was 9-12 months survival. Only 10% of children with this tumor live past two years; and quite frankly, after all of the research we’ve done coupled with the number of children we’ve seen die, we think that number is generous.

The tumor was located directly on the pons, which controls all of our reptilian functions...breathing, swallowing, heart rate, everything necessary to live.   Without radiation, Max’s prognosis was 4-8 weeks...that was the aggressive nature of this tumor. Over the next few months, Max would endure conformal radiation everyday followed by experimental chemotherapy. Max’s tumor did shrink, only to return again after just three short months. Along with following an all organic, healthy diet, Max was given alternative experimental chemotherapies to no avail. On July 4, 2009 Max won his battle with DIPG and went to Heaven.

Max was an amazing spirit and one of the most loving, caring little boys you could ever meet. He encouraged others and was constantly trying to make peace with everyone. He loved Star Wars (saw every movie and could re-enact every battle scene), sushi (his favorite was tuna), and Legos (he completed over 115 sets during the nine months he was sick, some of which were well over 1,000 pieces).  He even completed some of his Lego sets with the directions upside down so his Mom could use the booklet instead! Max had a passion for life, his friends, and his family.  He always thought of others before himself. He was an old soul and wise beyond his years. Max was love. 

Max is missed by so many. His wit and charisma brought smiles to everyone he knew. Max had a brilliant future that has been taken away by pediatric brain cancer. That is why we started the Max Lacewell Foundation. No parent should lose a child and no child should be given a terminal prognosis because of lack of awareness and funding.  We are committed to funding meaningful research for DIPG which hasn't had an advancement in treatment in over 30 years.  Many oncologists believe that finding a cure for brainstem gliomas could unlock cures for numerous other cancers, both pediatric and adult. It is devastating to hear "your son has cancer." What is even more devastating is to hear, "Your son has an inoperable, untreatable, terminal cancer because it is so rare and we don't have the funds to study it."   

It is our dream that no child has to endure cancer. However, realistically it is our  hope that those kids who are diagnosed will have a fighting chance against it. We  are committed to raising the money and awareness necessary for those kids diagnosed because we believe Max would have wanted the same thing.

On Monday, June 13, 2016, the foundation will host Best Day Evuh Golf Tournament at Bolingbrook Golf Course to raise funds for Lurie Children’s Pediatric Brain Tumor Program.

Click here to learn more about Lurie Children’s Pediatric Brain Tumor program.

[luriechildrens]

Mind Over Gray Matter - Diego’s Story

May 5, 2016

By Josefina, Diego’s mom

On September 18, 2014, late at night, we took Diego who was 8-months-old at the time, to the Emergency Department at Lurie Children's because he had been vomiting for almost two weeks. He also had spent the majority of the days and evenings sleeping. That night, possibly very early into the next morning, the Emergency Department doctors discovered a large, malignant tumor in his brain. It was a horrible night. He had two surgeries following - one to drain the excess fluid in his brain and another to resect his tumor. Unfortunately due to the location of the tumor, near the brain stem, part of it was deemed inoperable. The resected tumor was sent to pathology and it came back as anaplastic ependymoma.  

Our next step was a meeting with the neuro-oncologist, Dr. Jason Fangusaro. He had an honest conversation with us about Diego's tumor and treatment options.  At one point he said something to the effect of, "It's going to be really, really difficult." He was not kidding!

It's now almost 18 months later. Diego has since been on two different chemotherapy protocols, had numerous hospitalizations and surgeries. So yes, there have been days that have been really, really difficult.  However there have been many more days that have been really, really great. We credit the treatment choices our team at Lurie's Children’s has made for Diego along the way. Although brain tumor treatment is no joke, the team has always taken the route of selecting evidence-based treatments that take Diego's quality of life into account.

We love Dr. Jason and Diego's neurosurgeon, Dr. Tord Alden, and the nurses on their staff. They are incredible! They are charged with the difficult task of treating many of the sickest children in the city and country and yet when we step foot in the hospital it feels like Diego is their only patient.

We really wish that today we could exclaim that Diego is cancer-free. Unfortunately Diego is still in treatment. We hope and pray for a miracle, a cure, more time, because in our hearts we know that until there is a breakthrough in brain tumor research, his future is uncertain.

One thing that is certain is that we are still blessed with the gift of Diego. He is super sweet, cuddly, loving, and stubborn too! He brings so much joy to our lives. His life may not be perfect but we're going to do everything in our power to make it wonderful!

Click here to learn more about Lurie Children’s Pediatric Brain Tumor program.

[luriechildrens]

Mind Over Gray Matter- Bret’s Story

May 4, 2016

By Lisa, Bret’s mom

Bret was like any other normal healthy 10-year-old boy just starting the 4th grade. He was always a straight “A” student, favorite sports to play were soccer and golf and he was a diehard Cubs fan!  Although Bret was a very shy boy by nature, once he felt comfortable with you, he loved to make you laugh with his one-of-a-kind sense of humor.  You would have never thought that this handsome little blonde-haired, green-eyed boy was about to face the biggest fight that no child should ever have to.

Bret completed a total of 13 days into the school year when he started to experience unexplainable symptoms such as, vomiting for no apparent reason, extreme tiredness, neck pain, an unsteady gait and finally double vision. About four weeks passed of pediatricians not having any answers, so we took him to the emergency room near our home in Indiana. On September 28, 2002, a CT Scan revealed a golf ball size mass in the fourth ventricle of his brain. An emergency surgery was performed that night to relieve the pressure (hydrocephalus) building up around his brain. We were told that due to the severity of his condition, Bret would need to be cared for by pediatric specialists.

There was no time to even absorb what was actually happening to our son, a decision had to be made and fast. Ann & Robert H. Lurie Children’s Hospital of Chicago (formerly Children’s Memorial Hospital as we knew it then) is known all over the country as one of the top children’s hospitals in the world, and it is where we wanted him to be.

Bret was airlifted the next day by Lurie Children’s Transport Team. We were greeted by the top physicians in their fields, Dr. Stewart Goldman (Hematology/Oncology) and Dr. Tadanori Tomita (Neurosurgery). An MRI determined our worst nightmare, Stage 4 medulloblastoma brain cancer. Surgery was performed 3 days later to resect the tumor. As if things couldn’t have gotten any worse, the tumor had metastasized to the entire surface of his brain. We were given the very aggressive course of treatment plan, but were also told that Bret was not expected to survive. How, as parents, do you even begin to explain this to your very sick little boy, when we don’t understand it ourselves? So Dr. Goldman stepped up and very graciously explained to Bret, in only words a child could understand. His response was simply, “ok”. And so it began.

Bret was to begin a six week regimen of brain and spinal radiation, followed by fourteen months of chemotherapy. All of that was halted when Bret starting seizing uncontrollably. In order to stop the seizures, he had to be put in a drug induced sleep with monitored anti-convulsion medications. It was then that he had a very dangerous allergic reaction to one of the medications and developed yet another life-threatening condition called Stevens Johnsons. He was in the PICU for about three weeks until the rash cleared up and he was finally able to begin his treatments. Because he was still considered unstable, they transported him every day, for the entire six weeks, by ambulance to Northwestern Memorial Hospital. Once chemotherapy began, it was about 4 months before Bret was finally able to go home.

He wasn’t home for more than a few days at a time, because the chemotherapy side effects were bringing him right back to the hospital. Many surgeries, line infections and low counts kept us coming for about the first two years of his illness. He was only able to complete about seven months of chemotherapy as we almost lost him twice due to the aggressiveness of the treatments. With Dr. Goldman’s advice, we had to stop treatments and hope for the best. Bret defied all odds and as time went on, he was well enough to attend a school for children with disabilities. The Special Education Learning Facility (S.E.L.F.) of Valparaiso, IN welcomed Bret with open arms. Because Bret experienced so much trauma to his brain, he was developmentally delayed, suffered apraxia (oral motor difficulties limiting feeding), aphasia (limited communication), seizure disorder, adrenal insufficiency and hypothyroidism, just to name a few. You would expect someone faced with so many challenges to be angry with everything around him, but not Bret. He walked in that school with so much confidence, joy and happiness, that he greeted the entire class with a big “hi, Me Bret”, and hugged everyone in the room. It was from that moment on when they all realized what a special young man he was. There wasn’t a mean bone in his body. He just exuded love and compassion to everyone he met.

Bret continued to thrive for the next five years or so. Throughout that time, we had occasional hospital stays for one thing or another, as well as routine scans and blood tests, but against all odds, he remained in a stable condition. Our happier days quickly came to a halt in late November of 2011. We started to notice subtle changes with his vision, like not being able to focus, depth perception and an increase in seizures. As these signs worsened, we discovered a lump on the back of his head and immediately called his doctors. His routine scan was moved up and completed in January of 2012. Our worst fear had come true, another brain tumor. A biopsy a few days later revealed that this was a post‐radiation tumor called a chondroblastic osteosarcoma, one that we knew he had a 20% risk of developing from his treatments the first time around.

We again were faced with all of our options for Bret and were advised by his doctors that given how he was unable to tolerate the treatments the first go –around, they did not want to put him through that trauma again. So we were forced to make the decision that no parent should ever have to make. We wanted to give our son the best quality of life he had remaining and to make sure he was as comfortable as possible. The doctors had expected it to be two to three months left, but once again, Bret did things his own way and fought until the very end. On May 25, 2012, our courageous young boy lost his fight and passed away so very peacefully.

Bret was truly a “Miracle Boy” in every way imaginable. The doctors never thought that he would have survived another 9 ½ years, so this is how he was commonly referred to every time  we were there. Throughout his entire journey, he never once let you know that he was in pain, or that he was angry or sad about having cancer. He always made sure to tell us “Love You More” many times throughout the day. He has touched so many lives and continues to inspire people everywhere with his strength, courage, love and compassion, that it is why we were driven to start The Bret Laczynski Brain Cancer Research Fund in his honor. It is what Bret would have wanted   to help in whatever way he could, so no child should ever have to suffer like he did. It is with great pride that I can call him my son and will continue to keep his memory alive.

“Thumbs Up” Bret  and “We Love You, We Love You More!”

Click here to learn more about Lurie Children’s Pediatric Brain Tumor program. 

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Mind Over Gray Matter- Jonah’s Story

May 4, 2016

By Stephanie, Jonah’s mom

I guess if I really think about it, our story probably begins in the spring of 2014.  Jonah was a happy, healthy, energetic, bright 3 1/2 year old who was wildly popular in preschool. He was both little brother to an older brother and sister, and big brother to a baby sister. Spring of 2014, regular waves of nausea and vomiting started to interrupt his exuberant play with growing frequency, so we took him to a GI specialist. Everything checked out, so Jonah was put on a course of antacid and everything cleared up. Jonah continued to live his life at full speed, with a bump in August 2014, when he was diagnosed with an anaphylactic allergy to flaxseed. Jonah turned 4 in December and helped to usher 2015 in with great fanfare. Super Bowl XLIX is a game that will live in infamy in our family, not because the Patriots beat the Seahawks with the swirl of "deflategate" controversy in the background, but because Jonah had another flaxseed exposure that landed him in the ER.

After the Super Bowl flaxseed event, Jonah's nausea & vomiting returned, and so we returned to GI. This time the antacid didn't seem to help the nausea & vomiting, so we loaded Jonah up for a field trip downtown to Lurie Children's in May 2015 for an upper endoscopy. The endoscopy revealed that Jonah had EoE (Eosinophilic Esophagitis), which is an allergenic condition of the esophagus that effects about 1 out of every 2,000 people. Currently, one of the best treatments for EoE is an elimination diet, so in June we ruthlessly eliminated diary, eggs, fish & shellfish, all nuts, soy and wheat from our family's diet.  Unfortunately, Jonah seemed to be getting worse instead of better.  He was eating less and less, vomiting more and more. Our bright, rambunctious, big living little boy was fading before our eyes.

By July, our pediatrician was growing concerned as well, as Jonah had grown extremely lethargic and had lost almost 10 lbs. since the spring. After a disconcerting afternoon of Jonah complaining of double vision, followed two days later by an episode of "word salad" (using proper words in incoherent order), we were sent to our local hospital for an immediate MRI.  What started out as a normal Wednesday, forever changed the lives of our whole family. A tumor, the size of a plum, was discovered in the cerebellum portion of Jonah's brain. That evening we were transported via ambulance to Lurie Children’s.  Jonah was so sick, he didn't even appreciate the ride - he was a shadow of the boy we knew.  

The following day, it was confirmed that Jonah had medulloblastoma, which had metastasized through his brain and spinal column.  Although medulloblaostoma is the most common malignant pediatric brain cancer, only 400-500 cases a year are diagnosed. The days that followed were a blur - surgery to remove the tumor, a life threatening hematoma on the brain, transfer to the PICU for two weeks, remaining intubated for 1 1/2 weeks, another hematoma, surgery to place a shunt and central line. Jonah also suffered a severe case of posterior fossa syndrome as a result of the surgery, which only occurs 20-25% of the time. That meant that Jonah's body basically forgot to listen to his brain - it was almost like he was in a coma, but he wasn't - he couldn't breathe for himself, eat, move, smile or talk. As much as we longed to allow him to recover from the posterior fossa syndrome, his cancer was too far spread and we didn't have the luxury.

Pediatric cancer treatment decisions suck. As a parent, you have to decide between terrible and horrible. There isn't a third, more pleasant option. We choose terrible, and Jonah received 5 rounds of high dose chemotherapy. On the oncology floor, they referred to his treatment as the kitchen sink and the reality is these doses could kill an adult.

In stereotypical fashion, we saw Jonah's beautiful bright blonde hair fall out, we saw him continuously nauseous and throwing up so regularly that it stopped phasing any of us. We saw mouth sores, skin rashes, hearing loss, neutropenic fevers and random infections. After that, Jonah received a 6th round of chemo, followed by a stem cell rescue that made the first 5 rounds seem like child's play. Our team tried to prepare us for the fact that this cycle would be hard, but no one can adequately prepare you to watch your child have mouth sores so bad they need a morphine drip to dull the pain, to watch your child burn from the inside out and peel head to toe, to watch your child so miserable that you can't find the light in their eyes.

Because of the posterior fossa syndrome, when Jonah wasn't at Lurie Children’s receiving treatment or recovering from a fever, he was down the street at Rehabilitation Institute of Chicago doing rehab. Jonah had to relearn how to eat, smile, laugh, talk, squeeze a finger, sit, and stand and walk again.  His hand dominance changed, as his right side longer possessed the strength it needed. A boy who had learned to ride an 20" 2-wheel bike at 4, was riding adaptive tricycles.

Today, Jonah is a 5 year old boy fighting his way back to a new normal. He has been in the hospital for over 250 continuous days, has received close to 100 blood & platelet transfusions, had 5 surgeries and countless tests. Because of the posterior fossa syndrome, many physical activities are a challenge for Jonah.  He uses a walker or wheelchair to get around and requires IV nutrition as he doesn't eat much.  Jonah wears glasses as a result of his surgery, and looks quite stylish in them and he is eagerly awaiting the return of his hair. The spirit of the boy we knew has returned - he is again silly, loving, kind, inquisitive and warm. He is also different - he is more timid, less confident, more scared.  Cancer has changed him on the inside as well as the outside.

As I said, pediatric cancer treatment decisions suck. Now that Jonah has finished his chemotherapy, we have to decide if we move onto radiation.  Radiation isn't great for a developing brain. It's so terrible actually that doctors rarely recommend radiation under the age of 3. In the window of 4-8, things are grey. Radiation destroys developing brains and most brain development is before the age of 8. Although they can't tell us how much, our medical team can guarantee that radiation now will cost Jonah IQ points that will likely effect his abilities in the future. The flip side is that radiation is currently our most effective treatment for medulloblastoma.  

A friend recently advised me to stop predicting and start living - to fight hard to give Jonah the best life we can - but to live it with him.  That is part of why we are sharing our story with you. Pediatric cancer is an uncomfortable topic, but, on average 13 children a day are diagnosed with brain tumors alone. If you don't know a child with cancer yet, it is very likely you will soon. With awareness comes funding and with funding a cure, and right now childhood cancer only receives about 4% of the cancer research funding. However you choose to engage, please consider helping change these statistics for the kids of tomorrow.

To follow Jonah's story as it unfolds, please visit thegoodalllife.com.

Click here to learn more about Lurie Children’s Pediatric Brain Tumor program.