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12 Days of Giving
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If the walls of OSF HealthCare Children's Hospital of Illinois could talk, what would they say?

They would tell stories of four-year-old heroes and disease villains. They would start a slow clap for every staff member that, day after day, gives everything they have to make a difference. And above all else, they would spread the message that when WE all come together, the impossible is possible.

To see all of the 12 Days of Giving stories as they’re released, follow us on the Children’s Hospital of Illinois Facebook page.

 

12 Days of Giving

Karlee

Patient

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My family calls me chickadee because when I was a baby, I had no hair. They said I looked like a baby chick with just a few pieces of hair sticking up. It’s always been hard for me to grow my hair out, but this year I finally did it. My hair reached past my shoulders. It was long, and I loved it. Then I got diagnosed with Acute Myeloid Leukemia, AML. I knew the day would come that I would lose all of my hair. The day I shaved my head has been one of the hardest so far. I don’t cry that often, but that day was tough. I couldn’t keep it in.

-Karlee

The day Karlee was diagnosed with Acute Myeloid Leukemia, I was in shock. You never in your wildest dreams think your kid is going to be sick like this. We had a couple choices on where to do treatment, but we wanted to stay here in central Illinois with all our family and friends. Karlee has to be inpatient for close to five months for treatment. Being admitted to OSF Children’s Hospital was our best option. They had the right treatment plan for us and we could be close to our home in Washington. I’ll never forget the first day of chemo. She kept getting sick. She looked at me and said she didn’t think she could do this. I told her that she’s a fighter, and yes she can. There is no other option. From then on, we chose to be positive. We are so grateful for the care she has received here at this hospital. Each week, one of our family or friends brings in a meal or snack for the staff, just to say thank you. Our family and friends are our support system while we are here. Karlee might actually already have the record for number of visitors. That is what keeps her going and positive. We all fight for Karlee now because we know she can do this and she will kick cancer’s butt.

-Krista (mom)

I’m grateful for the nurses and doctors here at Children’s Hospital of Illinois that have helped me stay positive. Most of them get it. They get that I’m old enough to understand what they are talking about. They walk with me to get a frappuccino from the café or help keep me busy. I’m one of the oldest kids here right now, so it’s hard sometimes to see all the young kids and babies on my floor getting treatment because they can’t always communicate what they need or what’s hurting them. But I stay positive and keep focused on finishing treatments so I can go home. My aunt and mom decorated my hospital room with pictures, decorations and plug-in room fresheners to make it feel more like home. My mom has been right by my side this entire time. We usually are always on the go, so it is a big change to be stuck in this room, in the hospital. We are learning patience.

-Karlee

My friends and boyfriend all started college this fall. My dream since forever ago was to go to school to be a nurse. That’s on hold while I am at OSF Children’s Hospital getting my treatments. I keep telling myself only a few more months, and then I can concentrate on getting back on track for college. My nurses here have been so inspirational. It’s been cool to see them do their job first-hand. I hope one day to be doing the exact same thing as them. I can’t wait. I can’t wait to meet my friends at Dunkin’ Donuts for coffee and homework study dates. I can’t wait to get my nails done again. I can’t wait to just get in my car and drive, whenever I want, wherever I want. I can’t wait to be a nurse and help sick kids, just like me.

-Karlee

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12 Days of Giving

Julia

Patient

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The day of Julia’s birth was surreal. At 20 weeks we’d found out that she had a rare birth defect where her small intestine was completely separated from her stomach. They told us she would need surgery within hours of being born. The doctors had so many percentages and chances for things like heart defects, kidney defects – even survival. We did what we knew best, we prayed and put everything in God’s hands. My wife, Meranda, was life flighted to OSF in Peoria after going into labor early. She spent five weeks on bedrest. I’m not usually a very emotional person. But when I saw Julia for the first time it hit me – I’m a dad. Thank goodness, everything went well with her surgery. While we had amazing care, our time in the NICU, was hard. I was driving back and forth from our home in Bloomington after work. But it was comforting to know that both of my girls were in one place being taken care of. They told us Julia would probably spend three months in the NICU recovering. But she’s a fighter and she came home in three weeks. It’s been 13 years since then.

– Jermaine (Dad)

Julia had her second major surgery at OSF Children’s Hospital at five years old. Her intestines were twisted in several areas, kind of like a garden hose when it gets a kink. She was in a lot of pain and we feared there had been permanent damage. The doctors were able to correct the intestinal malrotation and she healed wonderfully. When she was 10 years old she had her third, and most serious surgery. She had a large intestinal blockage and a tumor had been found on her spine. She had to have a full, open abdominal surgery. Recovery was hard this time and very emotional. She didn’t eat for 17 days. It’s gut-wrenching to see your child feel hungry and not be able to give them anything. I found myself stepping out of the room for a cup of coffee, parent meal or snack from the nourishment room in order to keep my energy up. Waiting for results was emotionally challenging, but we were kept informed. Even though her tumor was benign, it required two years of monitoring until she was given the all clear. At OSF Children’s Hospital, she truly found healing not just physically, but emotionally.

– Meranda (Mom)

Hospital life is hard. Most people don’t realize that one day in the children’s hospital actually feels like seven. Kids aren’t like adults, even though they are sick or in pain, they still need to be kept busy. You add all the worry, fear and not sleeping on top of that and it’s mentally and physically exhausting. You’re away from all the comforts of home. But OSF Children’s Hospital knows this. Their Child Life staff is amazing. They are miracle workers. The little “extras” like receiving handwritten letters, doing craft time, having toy rooms, an in-room movie streaming service and special visitors make a huge difference. We have had life changing encounters with so many staff members from housekeeping, nurses, student nurses and doctors—each of these individuals have an extra special place in our hearts! During our last visit, one of our favorite staff members came running towards me asking how big my car was. They wanted to surprise Julia with a giant stuffed bear. I couldn’t believe it when I saw it. “Caitlin Danielle” as Julia named it, has become a legend both at the Children’s Hospital and our home. When I ask Julia what she remembers about the hospital, it’s more of the “fun” times rather than the bad days, which is pretty incredible. I don’t know what we would have done without this hospital. They are a part of our family and we are forever grateful.

– Meranda (Mom)

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12 Days of Giving

Joe

Patient Care Liasion

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Everybody here calls me the baby whisperer because I’m really good at calming the little ones down, but my official title is Patient Care Liaison. Basically, I do my best to be as helpful as possible for the patients and their families while also keeping the behind the scenes of the unit running smoothly. It’s hard to list what I do because every day is something new. I’m either running between pharmacies or other departments to get the staff and patients what they need or sitting and playing with the kids when the parents need to step out. My favorite part is getting to know the kids and watching them change as they get better from day to day. I get to see their true personalities come out. My sister has worked as a nurse here for a long time and used tell me about the busy seasons, but I didn’t realize that patients and families come here from all over the world just to get treatment. If I can put a smile on their face for just one day while they’re here, then I’ve done my job. I grew up in Peoria so I’ve known about OSF my whole life. To be part of something so huge in the community is a great feeling. It’s easy to drive by the Children’s Hospital of Illinois and not realize everything our families are dealing with. I never knew how many sick kids are actually here. It’s amazing though, how far a smile can go for somebody experiencing one of their worst days. I love my job because I get to help everyone, every day.

– Joe

Joe is fantastic and truly selfless. He goes above and beyond what is expected of him in his role. He’s always willing to go the extra mile to get things done and puts the needs of others first when our unit gets busy or hectic. Joe makes sure that each family and patient has what they need to feel comfortable. I don’t know how he does it, but he makes them all feel special. He was even here on one of his days off a few weeks ago to bring a family one of those bumbo seats for their baby. He knew they needed it, so he brought them one his family wasn’t using anymore. Joe knows someone from every department and builds a relationship with everyone he meets. It’s how he can always find what our patients and families need. Every holiday he also decorates our floor to get staff into the spirit and brighten the unit. It is those little things that make a difference not only for the people admitted, but all of us working here too.

– Nurses in Joe’s unit

 

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12 Days of Giving

Ish Jr., Italy and Indie

Patients

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I knew very early, she was THE girl. I love how genuine and honest she is – how passionate she is. The day we met, she was coaching her teenage son’s basketball game and I was there to see some of the kids I do personal training with. We’ve been together over two years now. I knew I wanted to propose in front of both our mothers. This past May she thought we were going to my birthday dinner at her sister’s house. When she walked in, all our family and friends were there. Then I came around the corner with a ring. We knew we wanted to raise a family together. One day we were working out, one of our favorite hobbies, and Cia said she was exhausted. She thought she might be pregnant. We went home and took the test. During our first sonogram, I think we both thought it would be routine. Right away Cia noticed two sacks – and then another. Very quickly the tech turned the screen away from us. I’ll never forget the moment when she said there were three babies.

– Ishmael (Dad)

At first I thought it was a joke and then I went into shock. Triplets conceived naturally are rare. Obviously God wanted us to have three babies. But I won’t lie, we were scared. I didn’t know if I could carry them, if they or I would be healthy. So many things swirled around my head. You hear so many stories of things not going well. Ishmael immediately began researching triplets, potential complications and milestones we needed to get to. At first, we just wanted to get to 24 weeks. When I did, we moved the goal to 30. But it wasn’t easy. I had preeclampsia and was admitted to the antepartum unit on bedrest for a month. By the end, I was gaining 10 lbs. a day in water weight. I kept getting sicker and sicker. Then at 31 weeks and 3 days, I delivered our babies, two girls (Italy and Indie) and a boy (Ish Jr.).

– Cia (Mom)

I thought everything was okay so I went with our triplets to the NICU. I didn’t even realize what happened. But after Cia delivered, they couldn’t get her uterus to contract. There was so much blood. It turns out she had a bleed in her abdominal wall but we didn’t find it until days later. For that first week, she would bleed all night and then need units of blood in the morning. But I would still wheel her to the NICU to see our babies during the day. It helped knowing that even though they weren’t together all the time, Cia and the babies were in the same hospital.  It was excruciating though, watching Cia suffer. She kept saying, it was better something was wrong with her then them. But by the end of the week, she was showing signs of sepsis. I was so worried. Our family needed her. They gave her a heavy dose of antibiotics and somehow not only did the infection go away but the bleed stopped itself and her hemoglobin level stabilized.

– Ishmael

Having three babies in the NICU has forever changed our lives. For the most part our babies were healthy. They were just very small and fragile. The care we received there was amazing. The nurses are so knowledgeable. Over the course of a month, they helped us figure out the best way to do things. We’d obviously dealt with babies before, but never babies this small. They reassured us every step of the way. I’m not sure what we would have done without Children’s Hospital. I would have been separated from my babies. I wouldn’t have experienced those first skin-to-skin moments. The babies are 3 months old now and we are excited about what is to come. We’ve got them on a strict schedule and right now they are sleeping four hours during the night. We never leave this couch though. They haven’t even seen the upstairs yet. So short-term, I’m just looking forward to sleeping in my own bed again.

– Cia

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12 Days of Giving

Crosby

Volunteer

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This is Crosby. At home, he and his brother Cramer, are just like any other dogs, running around and barking at everything. But the minute I put on this volunteer jacket they know it is time to go help people. At least once a week, I bring one of them to the hospital. We are part of the volunteer group, Paws 4 Healing. It’s an animal-assisted therapy program designed to treat both the emotional and physical needs of patients. Crosby has a knack for picking out the people who are the sickest or just need some extra attention. I could tell so many stories about him. One time this little boy who hadn’t walked in days crawled out of bed just to see him in the hallway. Another time, Crosby was pulling on his leash which he never does. We came upon a man with his face buried in his hands, distraught. Crosby got right next to him and started licking his hands. He was trying to comfort him. He poured his heart out to us. His little girl was fighting for her life in the intensive care unit. He told me that Crosby had given him hope and helped him relax. That is the magic of dogs. They help people forget just for a minute what they are going through.

– Joy, Crosby’s Mom

I love when I get to come to the hospital. Everyone always stops to say hi and pet me. I love going into the rooms. Today I even got to snuggle on this little boy’s bed. His mom said he hasn’t smiled in over a week. I tried my best to make him laugh and get him to be happy. My mom and I will go around and see all different kinds of people who just need a friend. I do my best to make them feel better, even if it is just for a few minutes.

– Crosby, volunteer

I love when I get to come to the hospital. Everyone always stops to say hi and pet me. I love going into the rooms. Today I even got to snuggle on this little boy’s bed. His mom said he hasn’t smiled in over a week. I tried my best to make him laugh and get him to be happy. My mom and I will go around and see all different kinds of people who just need a friend. I do my best to make them feel better, even if it is just for a few minutes.

– Crosby, volunteer

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12 Days of Giving

Remi

Patient

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When Remington was born, the doctors at OSF Children’s Hospital didn’t even know if they had equipment small enough to stabilize him. I was only 24 weeks along and he was measuring even smaller. His lungs were underdeveloped, his skin was paper thin, his breathing was labored – he was so small. His hand was the size of my fingernail. But our baby boy is a fighter. After four days in the NICU, I was able to hold him. He was no bigger than my hand, but he was so active! I couldn’t believe it. It was awesome. I remember the NICU staff sitting our family down and telling us this was going to be a rollercoaster. They told us about the honeymoon period where everything seems great at first and then you have to weather the dips as he grows. Just like other families, we underestimated that rollercoaster. Remi has been here at OSF Children’s Hospital for almost a year now. We’ve only had one night at home with him until we were back in the NICU. There have been a lot of dark days, times where it felt like a glass house was shattering inside my heart, days I thought we would lose him. But there have also been beautiful days, where he opens his eyes and smiles at me or does something new. Those moments take my breath away. Through every single obstacle, every good or bad day, every moment of uncertainty, the staff at OSF Children’s Hospital has been with us. They care about Remi just as much as we do, many of them have become our family. They are fighting for him too. There are so many unknowns for Remi and what our future holds, but we wouldn’t want to be anywhere else. We wouldn’t know what to do if OSF Children’s Hospital wasn’t here for us.

– Brittney (mom)

I don’t get very emotional about things. I’m the calm and steady one, while Brittney tends to be the emotional, worry wart type. When Remi was born, I wasn’t sure he was going to make it at first. Things were so different compared to the birth of my first son. There were so many people in the room working on Remington. It is still amazing to me that they had the technology and equipment to care for him. The entire thing was surreal. It was almost like I was watching one of those medical TV shows. But I know that Remi is here today because of OSF Children’s Hospital, they kept him alive. Every day is different and brings new challenges or small little wins. But he is a fighter. It is hard sometimes to think if he is behind on things compared to other kids his age. But we just tell each other that he will get there in his own time. I do my best to hold it all together for our family, for Brittney. But sometimes when I’m driving and a certain song comes on the radio, I just can’t hold it in anymore. I have to pull over to the side of the road and break down.

– Justin (dad)

We’ve spent so much time at OSF Children’s Hospital this past year. It’s become a second home. I think what’s surprised us the most is how taken care of our whole family is and how people in and outside the hospital are rooting for us. One day, I was riding up the hospital elevator with one of the men in maintenance. He said it looked like I was having a long day. He reached into his lunch box and pulled out some trail mix for me. He said he hoped my day got better. I mean who does that? Our entire community has really rallied around Remi and our family. They have held fundraisers, put signs in their yards, and made t-shirts – really anything you can think of. When we are in the middle of a tough time at the hospital or we get down, they always pick us up. Brittany and I read all the comments on Remi’s Facebook page. It really has made a difference in our lives. Looking back on the past year, this whole experience has brought our family closer together. We’ve spent a lot of time up here going through every emotion imaginable. But we are still fighting and we are hopeful, that is pretty amazing. Grandpa and I even got to hold our sweet Remi for the first time in months a few days ago.

– Sherrill (grandma)

A little over a month ago, things were as bad as they could possible get. Remi was getting worse and worse. He had been in a paralyzed state for almost four months. We were planning his funeral. We’d go home at night and see the high chair and crib we have for him and I would just cry. And then, like a miracle, another mother reached out to me on Facebook and told us about a clinical trial that was working for her son at another hospital. We were desperate. Right away I told the OSF staff. At first they were hesitant. To do something completely new that was just a trial was risky, but they also knew they needed to try something different. The doctors got on a call with the other hospital and talked through everything. And in less than 24 hours, they started Remi on a new protocol. It was amazing, things immediately turned around. Remi came back to us. I will never be able to tell you how grateful I am for that mother and for OSF who listened to me and did every single thing they could for Remi. It speaks volumes. Now we are celebrating Remi’s first birthday in just a few days. He has spent almost his entire first year in the hospital, but we are grateful. He is here and doing better each day. We don’t know what the next year will look like for Remi, but we are hopeful. Remi has changed me, being in this hospital has changed me. I have learned patience and to smile and laugh more.

– Brittney (mom)

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12 Days of Giving

Anthony

Patient

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The hardest part is not knowing how long I’ll have with him. Anthony has CF (cystic fibrosis). It is incurable and progressive. A lot of people don’t understand CF, even some of our friends and family. They don’t get how severe it is, how we constantly have to work to keep him from getting worse. CF affects every part of his body – his lungs, his organs, his digestive tract, even his energy level.  I was young when I had him and it was overwhelming. I thought I had this perfect healthy baby and then when he was two months old, I found out he had CF and was legally blind. I was so scared and had a million questions. But Anthony’s care team at OSF Children’s Hospital walked me through everything. They gave me books to read and taught me how to do his treatments. Those first few years are a blur. But having a CF clinic where we live is amazing. I don’t know what we would do without this place. I can call anytime and know that someone is going to get back to me quickly. They reach out to tell me about new treatments or equipment we can try. Anthony is 18 now. We’ve spent a lot of time in this hospital every year. The people here – the nurses, the staff – they always remember him. I never worry because they always take great care of him. They make the hospital special and fun. We’ve been on vacation before and had to use services other places. I can tell you, nowhere is like OSF Children’s Hospital.

– Brandy (mom)

My dream is to be a Catholic priest one day. I love to spread my faith and help people. I even met the Holy Father, the Pope, in Italy. It was my Wish. I wasn’t always Catholic, but the more I read and connected everything together, the more it made sense. When I am sick and going through illness, it brings me closer to my faith and strengthens my relationship with the Lord. I offer my hardship up to bring Grace to those who don’t know the blessings of the Church. When the nurses at OSF come into my room I always pray for them. They have a hard job. When I see that one of them is overwhelmed I pray to Saint Raphael who is patron saint of modern day healers. Most days I battle this illness, but one day I’ll reach paradise and be free of this worldly pain. Right now my biggest issues with my CF (cystic fibrosis) are weight loss and respiratory. But I am still happy. I’m not afraid for the end, I’m joyful for what is to come in paradise after.

– Anthony (patient)

As I’m getting older, my hospital stays are becoming the new normal in my life. A lot of people assume it gets easier, but it is the opposite. The last time I was here, I stayed for about 2 weeks because I was so sick. I was losing weight so a gastronomy tube (G-tube) had to be inserted to make sure I was getting the nutrients I needed. I didn’t realize how difficult this was going to be. It effects everything in daily life, I was struggling. Bobby, one of the counselors at OSF, came to my room every day to check on me. He helps talk me through the changes and gives me coping mechanisms when times get too tough. One of the OSF Sisters also came to my room every morning to share communion with me. She’s from the Philippines so every day she taught me a new word in Filipino. Afterwards, we would sit together and pray the rosary. It meant the world to me.

– Anthony (patient)

This kid is not like any other kid. He amazes me. His life has so many struggles and so many unknowns, but he stays positive – always. Whenever I’m working at the hospital during one of his stays, we joke and laugh a lot. Every nurse loves him, but he says I am his number one favorite. The last time he was here, he told the charge nurse not to give me any other patients so I could just hang out with him. Sometimes he calls me into his room. When I ask what he needs, he says he doesn’t need anything, he just wants to say a prayer for me. His heart is so big, he only wants to give to and pray for others. It just blows me away every time.

– Lyndsi (nurse)

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12 Days of Giving

Kaylee

Patient

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For weeks, I didn’t tell anybody – not even my closest friends. I didn’t want anyone to feel sorry for me. I just wanted to finish my senior year of high school like any other normal kid. The other people in my family who have had cancer died. That is all I knew. I was just about to start my life and then it felt like it all came crashing down. I had received an academic scholarship to Illinois Wesleyan University and was accepted into the nursing program. I was also offered a spot on their softball team. After I was diagnosed in April, the hospital in our hometown of Champaign didn’t have any answers for us, no treatment plan. We just waited. For over a month, I could feel the mass in my chest growing. I was having worse and worse pain. Finally, we were transferred to OSF Children’s Hospital. Right away it felt different. I had a whole team of people to treat my Hodgkin’s Lymphoma. They knew exactly what we had to do. I told them right away – I need to start school in the fall and I want to play softball.

-Kaylee (patient)

In one way, I felt lucky that I was old enough to understand everything during treatment. I see these little kids and they don’t know. But it’s also hard to understand everything, to have the constant fear. So I mostly kept my feelings to myself. I was trying so hard to be strong for everyone but inside I was terrified. And keeping it all in just made the times I broke down that much worse. For a while I couldn’t play softball because my counts were so low, I lost my hair, my body became weaker, and it became overwhelming going to school and doing treatment. But my team at OSF Children’s Hospital was amazing—all the nurses and staff. Laura, the counselor at OSF’s Heller Center for Kids with Cancer, really helped me open up. She got me to talk about things I normally wouldn’t. She helped me process all the changes and uncertainty I was feeling. It never felt like she was prying. She just helped. When I would get down and overwhelmed by all that I couldn’t do, she always reminded me that our main goal was getting better. I had to beat Hodgkin’s first. Now that treatment is over, I feel like a stronger person. I can do more, I have confidence, I can assert myself. Cancer took a lot, but it also made me tougher.

-Kaylee (patient)

You never think it’s going to be your family. Kaylee was never even sick before and then to find out she had cancer, we were numb. Being stuck without answers or a plan was excruciating. We saw so many changes in her both physically and mentally. But coming to OSF Children’s Hospital changed everything for us. I don’t want to even think about what would have happened to her and our family if they weren’t here. This diagnosis changed so much. Laura, the counselor, also checked in with me and my husband during treatment. I don’t think people realize how a cancer diagnosis impacts the whole family. My husband and I, Kaylee and our other children all had struggles. Having a counselor was huge for us. It’s been a long seven months, but we are finally at the end of treatment. We’ll never be the same, but we are forever grateful to the care and love we received here.

-Deb (mom)

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12 Days of Giving

Kyra

Night Shift Nurse

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When I was just 15 years old, my mom suffered a ruptured brain aneurism. I spent three months in the hospital with her. While she was admitted, we experienced amazing care from nurses and staff, but we also had some experiences that weren’t so great. After a particularly bad incident, I decided right then and there, I wanted to be the one to help people, to do a good job, to get them through the worst times of their lives. After my mom came home, she required constant care. I was still just a teen and had to balance being the primary caretaker of my mom as well as my younger brother. This time made me who I am today. It helped me become the nurse who not only helps people with their medical needs, but thinks through what the caretakers are going through as well. Working at Almost Home Kids at OSF HealthCare Children’s Hospital of Illinois is the perfect fit for me. The kids here have medical complexities and often times have various pieces of equipment or new specific medical needs for at home care. I know what that feels like, I’ve been there. It’s exhausting and overwhelming as you try to figure it all out. This home is devoted to patient care and caretaker well-being and that is what I am passionate about. I am so proud that my work with OSF has brought me here.

Kyra (Night Shift Nurse)

Almost Home Kids is an amazing place for this community. The families receive unique, individualized care you simply can’t get in the hospital. Part of my job is to show parents and siblings what their new daily life will be like when the child goes home. I get to sit with families one-on-one and show them what to do if their child’s machine alerts them in the middle of the night, or how to properly dress and position the child for best comfort if they have limited mobility. Right now, we have a little boy who has spent most of his life at OSF Children’s Hospital. Now he is in our home and everything is much more relaxed. He can play, his family can come in and get one-on-one time and can even throw him a birthday party. It’s amazing. For the first time, his mom is gaining confidence caring for him, doing feedings and operating his equipment. His sister is learning safe ways to play together. It’s so rewarding to see the families grow and progress in their confidence. But this home is more than just helping families navigate daily life. It’s reminding them that they too, as the caretakers, are important. It can be mentally and physically exhausting being a caretaker, I know firsthand. It is okay to admit that and know that self-care is important. That is why I love that Almost Home Kids also offers respite care. Most people can leave kids with grandma and grandpa or a babysitter. But many of these children require the daily care of a nurse. With respite care, families can take a break, go on vacation, or have sick days without worrying. Here at Almost Home Kids, their child will be well cared for and have fun too. I hope I can make a difference in these families’ lives, even if it’s something simple like reminding them to take a deep breath when they feel themselves getting overwhelmed.

Kyra (Night Shift Nurse)

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12 Days of Giving

Zeke

Patient

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Zeke can’t fall asleep without me holding him. I haven’t left his side since we got to the hospital. He has Nephrotic Syndrome. My husband and I decided that I would come here and stay with Zeke and he would stay in Champaign with our 6-year-old son Auggie. We are trying to keep things as normal as possible, but it is hard. I’m exhausted, my husband is trying to do it all at home, our other son is struggling with all the changes and Zeke is in pain. I try to be strong for Zeke though. I figure if he can get through it I can too. Sometimes after he falls asleep, I sneak into the bathroom and just cry. I don’t want him to see it, but watching your child suffer, not being able to help, is awful. You are here days on end, just hoping things get better. It seems as if every day something else goes wrong for him. The other day my husband’s aunt came to see us. I didn’t realize how much I needed to see someone from our family. She’ll probably never know how much I needed that hug from her.

-Bobbi (mom)

Because of his diagnosis, Zeke’s veins are hard to get a needle in. He has to get poked so many times each day. He holds out his little arm and is so brave. But I finally hit my breaking point yesterday. He was screaming and crying and I just couldn’t watch it anymore. The doctors and staff came in to work with me on trying to do things orally to give him a break. I am so grateful for the nurses and Zeke’s team here at Children’s Hospital of Illinois. Up until 18 days ago, we had no idea anything was wrong with him. Now all of this happened. The uncertainty is the hardest part. We don’t know what next week looks like for us. We hope this diagnosis can be managed and one day maybe he will grow out of it. But we just don’t know right now.

-Bobbi (mom)

Zeke has been tough as nails, but Bobbi, my wife, has been beyond tough. I’m in awe of her. It’s so hard being separated from them. She’s taken on so much. She keeps a journal to track what he eats, how much he drinks and when he uses the bathroom. Controlling his sodium is critical. The doctors look through it each day. She stays on top of all the medical terms and explains it to me. I know she is mentally and physically exhausted. She has to watch Zeke endure so much. When I do get to come here and walk through the doors and she breaks down in my arms, it’s hard. Seeing your child and wife in pain moves you. Bobbi and I are here for each other though, it’s a give and take on picking each other up. I try to be strong for her. I’m doing my best to step in at home with our son Auggie, but I know it isn’t the same as her being there. She gave me this list of low-sodium items Zeke needed from the grocery store yesterday. I never knew how hard grocery shopping was until now. I ran around two stores, walking every aisle three times before finding what I needed. She’s the mom at the grocery store who helps others find things – she knows where everything is.

-Jeromy (dad)

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At times it will be hard to read, because childhood illness and disease is one of life's greatest injustices. But keep reading - because it is important that their voices are heard. As we learn these stories, we are trying to raise funds to help the team at OSF HealthCare Children’s Hospital of Illinois as they work tirelessly to help patients and their families.

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