When a child is chronically ill, the whole family feels the pain, particularly the parents. Regardless of the condition, the stress families suffer is remarkably similar. Here, JoAnne Colucci talks about the love, worry, and sheer exhaustion and the joy Rosie has brought to her life and the lives of others.
By Mary Beth Sammons
When JoAnne Colucci hears other parents complaining about their child’s behavior, or other discipline problems, she almost can’t relate. It’s not that she has the perfect kids by any means, but that she has been given a totally new perspective. It’s not one of her choosing but one forced on her, loud and clear, awaking her to the realities of life and death.
The Palatine, Ill., mom speaks of daily injections, intravenous tubes, the lasting side effects of chemotherapy, possible long-term secondary cancers, multiple medications, and facing the mortality of her youngest child. What she doesn’t share is the anxiety she feels watching her 8-year-old daughter Rosie suffer.
I sat by her bedside alone in the MRI suite, knowing what they were looking for a brain tumor and I knew what could be coming next, Colucci recalled. But nothing could have prepared me for the wall of emotion that hit me when a team of three doctors approached me.
I tried my best to digest the diagnosis, take it all in, wrap my head around the fact that my daughter had an inoperable brain tumor, she said. Being thrown into a situation where all I could do was sit by and watch as my precious child changed from a healthy, normal kid, to sick, thin, hair falling out, grayish in color, laying in a hospital bed, hooked to IVs with machine alarms buzzing around me I was frozen, just paralyzed. I felt like I had woken up in a bad dream, in another world. I was in shock.
Colucci’s circumstance illustrates what it is like for parents whose daily lives revolve around caring for children with chronic illness.
Rosie was 3 when she was diagnosed with multiple conditions: neurofibromatosis (NF), a genetic disorder that causes tumors to grow on the nerves anywhere, internally or externally. Her brain tumor is a direct result of the NF. The tumor’s location, in the very center of the brain, is the reason Rosie has a second life-threatening condition: acquired obstructive hydrocephalus. She has half a dozen other chronic conditions.
In the past five years, Rosie has had 142 highly toxic intravenous chemotherapy treatments; 16 surgeries, with another one planned soon; and more than 2,000 injections. She sees 13 specialists and has missed well over 70 days of school in first and second grades alone. Rosie has endured more than most people will ever have to in a lifetime.
Colucci said it was brutal when she began giving Rosie growth hormone suppressant injections for a condition known as pituitary gigantism. Every eight hours for almost a year, she had to poke her 3-year-old with a needle full of a painful push of medication that burned going in. No one else did the shots, just JoAnne, who remembers crying after doing it for weeks: injecting Rosie as she slept, waking her up late at night, and then giving with another shot in the morning.
I felt like I was torturing her, and no one could relieve me from the pain I had to cause my own child, Colucci said. It was agonizing, to say the least.
Lurie Children’s Hospital of Chicago, more than 35 miles away, would become Rosie and her mom’s second home.
When a child is chronically ill, the whole family feels the pain. Colucci tries not to talk about the stress Rosie’s illness has put on the family, its toll on her marriage, and her sadness and guilt about the lack of time and attention her 12-year-old daughter, Bella, has gotten since Rosie’s diagnosis. She said that constant tension, medical emergencies, and life-threatening scares has left her without time or energy to take care of herself. She has gained weight from worry, eating on the run, lack of exercise, and sitting in waiting rooms for endless hours. Some days, she said, she’s so exhausted she feels it’s an accomplishment just to get dressed.
It’s extremely difficult when you have a sick child, Colucci said. It drains the family emotionally, financially, and even physically. Some days you just feel like you can’t give even one more once of energy to anything. You are at the hospital all day with one child and then you come home to your other child who needs attention, too. Days run together, weeks pass, months and you have no idea what day or time it is. You don’t have a choice, so you just keep on going.
Bella opens up about the effect her little sister’s cancer has had on her life.
I have had to watch her lose her hair at the age of 3 and again at 5, Bella said. I have seen her so sick and weak, I thought she would die. I have seen her throw up day after day. She got to a point where she was just skin and bones; it scared me. I was really worried she wasn’t going to make it. I have waited for her to come out of surgery and have laid with her before she went in (she has had 16 surgeries already, and I know there are more to come). She is very brave.
I’ve often been woken up by my Mom running around grabbing stuff, rushing Rosie to the hospital in the middle of the night. Other times I’ve woken up to find out they had already left during the night, not knowing what had happened, were they OK? I’ve worried a lot. I have gotten home from school to be greeted by a neighbor or one of my parents friends because Rosie had to be admitted into the hospital. I never know just how long they will have to stay. I never know just what to expect or who is going to take care of me.
Colucci said her biggest challenge is dealing with the anxiety about what’s coming next.
I’ve been so focused on just putting one foot in front of the other for so long five years now. I truly just can’t comprehend the time that has passed, she said. She adds that Rosie’s condition is currently stable. For a moment, I can finally look up and see that there is a world outside of Rosie’s illness. Somewhere in the past year or so I’ve stopping thinking about Rosie’s death every waking moment and changed the focus to I have today, this moment to cherish.
For more information about Rosie, check out her Web site, Rosie’s Closet.
Colucci’s Tips for Helping a Chronically Ill Child Cope with Pain
1) Have your child blow tiny bubbles, the smaller the bubble wand the better. Blowing tiny bubbles requires focus: Kids have to do it slowly so that the bubbles won’t pop. Without them knowing it, their body begins to relax. It has a calming effect. It’s a great distraction, helping to concentrate on something else, and a great benefit. It can even lower their blood pressure.
2) Get some soft Nerf-type balls and have Five Minutes of Anger every day. Let your child throw the balls as hard as he or she can at a wall, or a specific place (like the back of the couch), or the floor, and let them go crazy. As they throw the balls, do it with them, pick up a ball and yell, I hate shots, Shots hurt, Bad, stupid shots¦ anything they want to yell about. CHEMO SUCKS! is a great one. (I got over the bad word quickly because it really does suck!) Five Minutes of Anger daily will alleviate the grumpy, complaining attitude all day long. Once five minutes is up, you can shake out your bodies and say, Enough of that, now let’s make it a great day! Letting them have a time and place to express their anger helps them manage it better. It gives them a controlled setting to get really mad! Once it’s over, move on and focus on positive statements.
3) Don’t tell your child not to cry, especially a boy. They don’t have to be a tough guy all the time. Things hurt, and crying is a positive release. Crying can help your child let go of harmful tension; it can relieve them of sad or confusing emotions. Sometimes all they need is a good cry I’m sure you can relate to that. Even encourage them, let them know you understand their pain, say something like, I know you are hurting right now, it’s OK to cry, just let it all out.
Tips for Parents
1)Â Â Â Â Learn to breathe. If you donâ€™t do some form of meditation, learn to sit and be in the moment, wherever that is, really be in that moment. Find a quiet place, even if you just close the door in any room. Close your eyes, feel the air entering your nostrils (in for the count of four), then hold your breathe for four counts. Now concentrate on blowing it out of your mouth (out for four), slowly rest for the count of four, donâ€™t open your eyes. Repeat this several times. Feel yourself relaxing? Itâ€™s the same concept as the kids blowing bubbles; youâ€™ll feel calmer and your blood pressure will most likely drop a bit.
2)Â Â Â Â If youâ€™re stuck in a hospital room, find a volunteer or ask a family member or friend to come sit with your child so that you can take a few minutes to get outside, stretch, walk around the block. It can give you a chance to clear your head, reboot. Hospital time is strange, you lose track. Days would go by, and I donâ€™t think I left Rosieâ€™s bedside except to go to the bathroom. I still have a hard time taking care of me. Donâ€™t forget: You have needs, too.
3)Â Â Â Â Start going to a support group or find a good talk therapist. Donâ€™t be afraid to step outside of your comfort zone and ask for help. When people offer, learn to say â€œYes!â€