Since you are here on our blog you may all ready know that Discovery Arts is a very special organization that brings Music, Art, Dance and Drama to children who are in the hospital receiving treatment for cancer and blood borne diseases. These very sick children all share one wish.... "to be normal". Anything we can do to make their journey a little easier or a little brighter is our greatest wish. We are honored to serve these wonderful children and their families each and every week and all year long.
I would like to share my experience, strength and hope to bring light to why this is so important to children and their families. It was under very blessed circumstances that I met Discovery Arts’ kind and loving Executive Director Marilyn Clements. It took some time for me to gather the strength to come forward to actively participate with Discovery Arts. I remained very much in the background for many years offering to help here and there when I could. You see … I had to gather up some healing before I felt strong enough to be able to give back, or strong enough to share my story. God in his mysterious way has led me full circle.
The impact of watching your child live their life in hospital rooms – takes some time to heal from, if you can call it healing. I am now convinced that there will never be total healing … just a different way of coping.
Many years ago, my first child a sweet baby girl, Ilona Rene was born in Wiesbaden Germany on January 1, 1981. It was also my first wedding Anniversary. Just days later the Iranian Hostages were released. They were brought to Wiesbaden AF Hospital to debrief before heading home to the US. You might remember on January 20, 1981 President Carter ended his Presidency and Ronald Regan was inaugurated. Within 24 hours former President Carter traveled to Wiesbaden Germany to personally greet the Hostages on their release on January 21, 1981, after 444 days in captivity in Iran.
I was told on January 1st, when Ilona was 8 hours old, that there was a problem with her heart and she was immediately transferred to a children’s specialty hospital in Wiesbaden. I was still a patient myself so I had to watch them take her away in an incubator. This was my first heart break and I was only 19 years old myself. That visual is burned in my memory bank.
When I could get to Ilona the next day she was in a shared room with a very young child who was connected to an Iron Lung. He was probably 5 years old. I will never forget walking into this hospital room – one tiny baby all connected up with her hands tied down and this 5 year old clamped down with a respirator. This young boy was fully conscious and alert. He could see my pain every time I walked in the room – yet he was the one with tears streaming down his face – and unable to speak to me. He didn’t know English and I didn’t speak his language, but we communicated a lot during those days and nights. All I could do was stroke his arm and hair and let him know that I cared deeply for him. He had long soft curly brown hair and big round brown eyes. In the days I shared with him not once did he have a visitor; no Mom, no Dad, no Grandma or Grandpa, no brothers or sisters. No One! One of the biggest regrets in life my … why didn’t I get his name? I still have a need to know.
Ilona was transferred to Wiesbaden Air Force Hospital when she was 14 days old. On approximately January 24th we were medevaced by helicopter to Landstuhl Regional Medical Center, a US Army Hospital in Germany. That’s when we were so graciously celebrated by the Iranian Hostages. They had been watching us board the helicopter; me, a nurse and Ilona in an incubator. This was all very surreal, I was buckled in sideways as we took off, looking out of the side window of the helicopter. I will never forget the view of the snow drifts around the helicopter as we were lifted up to eye level to see the hostages who were on the 3rd floor balcony of the hospital waving at us, wishing us God Speed.
Once at Landstuhl it got much more intense – long … long hallways to get to ICU. Rougher treatments, with lots of poking and prodding. Ilona had her first Cardiac catheterization (of 5 total), which is a tube inserted in her hip artery to her heart, for diagnostic evaluation. The Air Force put us up in housing, a lot like Ronald McDonald house, which was walking distance to the hospital. It’s there at Landstuhl that we met Christopher C. and his parents Lux and Craig. Christopher was a heart baby about 6 months old, in ICU in a bed next to Ilona. His Dad was stationed in Italy, and they were brought to Landstuhl to get help for Christopher. We had the same doctors and since we shared this common bond we became close friends with Craig and Lux. Christopher seemed to be doing ok. He also had big brown eyes and a generous smile to every one. His mom Lux was from Laredo, TX so you could see the fire in his heritage. He was a fighter, and he was strong. We spent lots of time with Craig and Lux supporting each other and getting to know each other well. We all decided to take a break one evening and played card games late into the night. We actually got a moment of relief and laughed a lot that night. The next morning as I walked into ICU – I found Lux who had told us Christopher passed away a couple hours before. We were devastated by their loss. They were quickly shipped out. As God would have it – they were there for us later in all places, Texas.
Ilona spent much of her life in and out of the hospital. At about 2 months old she was able to come home to Schierstein where we lived, in a suburb of Wiesbaden. Every morning rain or shine, (or snow), we would go to see her Doctor at Wiesbaden Hospital. She was teeny, only 5 pounds at birth and only 9 pounds at 10 months old when we were asked to travel to San Antonio, Texas to converge with a group of doctors who had been meeting with doctors from around the world in Dallas who were studying this type of heart defect. Ilona had Endocardial Cushion Defect; an abnormal heart condition in which the walls separating all four chambers of the heart are poorly formed. We also learned later she had Ventricular Septal Defect and a deformed left septum and her aortic valve was deformed to the point of being almost non existent and the tissue separating the chambers of her heart were actually valve tissue. All this made it taxing on her heart, which created cardiac pulmonary edema and also affected her breathing, to top it off as she grew her enlarged heart was pressing on all her other vital organs.
Before we could get to Texas she started having Tetanic seizures. Her first one threw me for a loop. I was visiting friends with her for an evening outing which we rarely got out for. As I left that evening and put Ilona in her car seat (which she hated) she got angry at me and started to cry which taxed her system – she lost air and couldn’t breathe. I could hear her struggling and turned around to see her completely purple. I grabbed her out of her car seat and ran to the bottom of the stairs of my friends apartment building and just screamed for help. I have never screamed so loud in my life. It was night and cold and snowy – another surreal moment. She was in a snow suit, I was trying to open the zipper and get to her chest to start CPR. Our friend Evan came out to find me on my knees trying to get her to breathe, and I was still screaming. All I can remember is thrusting her into his arms pleading for him to do CPR. He turned to go call an ambulance and I knew there wasn’t time. I just asked him “No, no you do it, please there’s no time”, he reluctantly gave her 2 breaths… miraculously she took a breath on her own. We were both in so much shock, its one of those moments that last for an eternity. We both wanted to be anywhere but there… anything but to be faced with the split second decision we were faced with.
Without a doubt, Evan saved her life that night.
Ilona ended up in another long stretch in the hospital after that. And before I brought her back home I was determined to know CPR. She ended up having a total of 12 Tetanic seizures. I was warned that it was a very real possibility that I wouldn't be able to pull her out of one of them. By this time there were daily cardiac meds that I had to administer and now Phenobarbital. I hated that stuff – it made her so lethargic.
As we planned our trip to San Antonio Texas to meet with the doctors, we also planned on taking a couple days to visit our friends Craig and Lux in Laredo, if we could get away, since we'd be so close. We boarded a C-140 (now called C7’s) medevac flight headed to Andrews AFB Maryland. In mid flight Ilona had another Tets Seizure, we built a make-shift oxygen tent – over a card board box - and placed her in it for most of the flight. They lowered the altitude to 10,000 feet mid way over the Atlantic and cleared all flights out of our path during that long, cold and noisy 18 hour flight. We gave everyone a scare … once landed we were greeted by an ambulance that took us directly into ICU. I later ran into some of the passengers on the flight who mentioned they weren’t sure if she’d make it. But because of the graciousness of everyone on that flight, she did make it. It took another 2 days to get to San Antonio, by way of an 8 hour hold up stuck on the tarmac in Syracuse, NY, de-icing the plane, and then an over night in Springfield, IL which is now St. John’s Hospital. We landed in mid October at Lackland Air Force Base in San Antonio, Texas and Ilona was admitted to Wilford Hall USAF Medical Center.
A couple weeks into testing the doctors informed us that they wanted to try a procedure called Pulmonary Artery Banding. They would basically put a rubber band around her artery to slow the blood flow through her heart. Their hope was to get Ilona to keep going for about 2 more years, then they would be ready for a heart transplant. At that time they had never done a heart transplant on a baby so young. So the goal was to keep her alive for a couple more years. We were also informed that she was getting damage to her lungs and that by 2 years old we may be facing a heart and lung(s) transplant.
While in Wilford Hall Medical Center we got to meet many family’s who were with their children in the hospital. One young boy I remember had his lower intestines removed – he was only 5 or 6 years old … and couldn’t eat solid food. I remember he was lively though. He was hooked up to so many intravenous tubes, but he could get around fast because he had everything on an IV pole. We were told not give him food and to “be sure to close your door when you eat cause he will ask.” So sad! The hospital room had a window on the door – and it was almost comical to watch his pole pass by the window of our room as he ran up and down the halls. We loved him because he was so sweet, he would come by and visit and share his latest adventures with us. He needed a superman costume for sure!
We had a few more days left before the heart banding procedure was scheduled, and the doctors said we could take a break, so we planned on visiting our friends Lux and Craig in Laredo. On the day we were scheduled to leave to see Lux and Craig, we had a meeting with a group of doctors who decided that they had reconsidered. In their words, “We can’t do anything for her, she will have a short life span. We will move you back to the States right now. What would you like to do?” But we wanted to go back to Germany – which really was home. They gave us 45 minutes to get ready to board another flight back to Europe. Our trip to visit Lux and Craig had to be canceled.
We left Texas on a medevac C-140 headed that night for McGuire Air Force Base, New Jersey where we spent the next 3 days in a hospital there. On November 9th 1981 we boarded another C140 for Germany, this time only 2 hours on a bus on the tarmac waiting to board. I remember it well because I was thinking this is an odd way to spend your 20th birthday. We landed in the Azores 15 or so hours later after a cold and rough flight to re-fuel and then headed home to land at Ramstein Air Force Base, Germany.
The next day we were back in the hospital at Wiesbaden, and every morning after that for the usual daily check up. And Ilona thrived! I always thought she hung on by the thread of love. Just lots of love. Then in early January 1982 Ilona got very sick. I remembered being told if she got pneumonia it could spell the beginning of the end. And when she came down this sick, I had a hard time coming to grips with it. It was right before a 3 day holiday and I was too afraid to call the doctor for fear of what he would say. Ilona’s Dad convinced me to call and get her checked out even if it was a holiday weekend. Sure enough she had pneumonia and she landed in the hospital for 2 weeks. But she recovered really well and was doing very good in spite of this bad spell. I later found out this really was the beginning of the end. This had weakened her heart and lungs.
By late January 1982 she had recovered pretty well and we were in a short uneventful phase. We had a pretty good understanding of the situation, yet she kept hanging in there, and I completely thought it was because of lots of tender loving care. Because we were told there was nothing they could do for her, short of meds and maintenance, I got to a state of acceptance pretty quick. I was determined to make every day special, and loving. I soaked in every fleeting moment. I grabbed on to every smile, hug and cuddle that I could. At least I was given the gift of knowing the importance of that. I suppose you could call it getting prepared, although I am not completely sure you can ever be prepared for the death of your child. I can’t even imagine how a parent who is faced with losing a child to an accident or sudden illness copes. That is a lesson she gave me that I have held onto to this day, to not take one moment with loved ones for granted.
I saw lots of miracles during that time, one in particular; my Uncle, (my fathers brother, my father had died just a couple years before) lived in Maryland my entire life so we really never got to know each other until we ended up living just an hour away from each other. He was in Heidelberg Germany the same exact years that we were living in Germany. He and my Aunt, and my cousins where some of the very few family members that got to met Ilona and get to know her. All of us in a completely different country... That had to be God taking care of us.
By mid February 1982 we received a telegram asking us to go back to Texas. The doctors had reconsidered and would like to try the banding of her artery after all. They had made some head way with heart transplants and felt if they could do this early enough we could get those 2 years we needed. I was hesitant and firmly declined at this point. It seemed to be harder to watch her suffer while in the hospital then to accept that we just had to make each moment count. My Mom and her Dad brought me to my senses and logically explained that this was our only option. They were right, this was her only chance. And if we didn’t take it then we’d never know and we would blame ourselves for not trying all options. But in my heart I really didn’t want to subject her to any more tests or any more procedures. I went into a strong protective stance and I know I wasn’t easy to deal with. This is where I learned that everyone in the hospital needs an advocate, and I wasn’t going to just take any ones word for anything any more. We were all in uncharted waters.
Our home was packed up and we boarded another C-140 headed back to San Antonio, Texas. For the life of me I don’t remember this trip back. Not one bit of it. I just don’t know where those memories are. Some how a couple of weeks are lost to me. Until the first week in April 1982. Since that year, this time of year is especially challenging for me.
We were back at Wilford Hall Medical Center with a few more tests going on. I recall walking down the hall of the hospital holding Ilona following her Doctor and her Dad. She had been given what they called a pedi-cocktail as she was getting prepped for another Cardiac catheterization, and she was higher then a kite. I was struggling to keep up and she was wiggling around in my arms – she bit me on my shoulder – don’t know where that came from – I laughed because she was intoxicated and seemed to be in a silly mood, it was really hard to see her like that.
That was Easter Sunday April 11, 1982.
At 5AM Monday April 12, 1982 we woke to a muggy day in Texas – Ilona was scheduled for surgery very early. We were told it would possibly be only a couple of hours in surgery. She was very upset because she was very hungry and pre-op she couldn’t eat or drink. Because I was still nursing her she was very upset with me of why I wouldn’t nurse her. She just didn’t understand why I wasn’t feeding her. After a while all I could do was lay her in her bed and just put my hand on her chest and pray as she cried and cried. She finally calmed down as I tried to speak to her to let her know it was ok. I picked her up just as a nurse came in to get her, because Ilona was upset she took her very quickly – she was reaching for me screaming. Tough... Tough memory.
Waiting room again … I was with family and we were hoping for the best. I was working on a needle point picture of a water mill (which I never finished until years later). At one point at exactly 9:01 AM I looked up at the clock and remember thinking we should be hearing something pretty soon. A few moments later the doctor walked in the waiting room and asked if we would join him in the hallway, were he told us she didn’t pull through. She died at 9:01 AM.
Two years later the first successful heart transplant on an infant was performed at Loma Linda University Medical Center. We decided to donate her corneas, which I was later told was successful.
Ilona literally died of a broken heart. And I learned to live with one. I remember being pretty angry that the Sun was shining that day. The rest of that day was spent gathering up her things from her room, and planning where to go from there. In her short life Ilona was already a world traveler, but I always wanted to bring her home to California. I just couldn’t leave her behind in Texas. I remember the flight back to California and hearing a baby cry on the flight – to this day I can hardly take hearing a baby cry. On the other hand my favorite sound is children’s laughter. The next 30 days are a complete blur except for her funeral. Everyone rallied around us and took care of the fine details. We went back to Texas and did finally get to visit with Lux and Craig, which was a very special visit. I only stayed for 6 more months in Texas. I have never stepped a foot back in Texas, and don’t ever plan on it if I don’t have to. Although a couple of years ago my eldest Son had been drafted to The White Wings Minor League Baseball Team in Brownsville, TX . I thought I might have to get over myself and make the trip. For him I would have gone. He is now moved on to other wonderful things. My youngest Son is my rock - I admire him so much, he gifted me with my wonderful daughter-in-love and a Grandbaby Olivia. Ilona also has another brother and sister from her Dad's side that will always hold a special place in my heart. All is well with the world today. Everyone is very healthy and strong. My double measure of blessing to be sure.
I wish during that short year and a half that there would have been a Discovery Arts program at the hospitals. I would have loved to have a Bedside Adventure Kit for Ilona, and would have loved to have something we could use to let our imagination soar off to some fantasy land for the young boy in ICU in Germany, or to see the young boy at Wilford Hall have a superman costume. There were many more kids I got to meet who touched my life in their own small way. I hope I was able to bring a smile to some of them too, I will never know. After all these years for everything to come full circle it is an honor and a privilege to be a part of such a heart warming organization as Discovery Arts that strives tirelessly to bring joy and relief to children that are in the hospital. From my own experiences I know what parents of an ill child are feeling as they try to come to grips with the horror of watching your child suffer. It really is heart breaking and mind numbing.
Since Discovery Arts relies entirely on the generosity of individuals, corporations and foundations, I ask you to consider becoming a Monthly Partner. Your gift of just $15 a month will bring the arts, lasting memories and a huge sigh of relief to children and their families during the scariest time of their lives.
My only other request is that you have a blessed Easter and that you strive to make the time you spend with your loved ones really special, each and every precious moment!
With Heartfelt Thanks,
Ilona’s Mom, Publicist for Discovery Arts
P.S. If you have strength and hope that you would like to share with our readers, please contact me. I'd love to hear from you so we can all band together to encourage other young families who might be facing similar circumstances.
Bringing the healing power of the arts to children who are in the hospital undergoing treatment for cancer or life-threatening illness.