Things You Would Never Expect

“Our son played travel soccer during his last year on maintenance. He still had his port in and a bit behind on his foot work but it was a great season.”

” Our son has grown so much through this experience.  He is so responsible and mature, kind and empathetic. This horrible thing has helped to shape him into an amazing person”

“We are closer now and even happier than before this happened. I can’t believe that one myself.”

“One unexpected gift I have received in this ordeal is the realization of the kindness of others. I have been amazed at the concern and compassion complete strangers have shown when they discover what my daughter is going through.”

“How strong my little daughter is… yes, she has a life threatening illness, yes, she has to endure treatments that I would not wish on my worst enemy, but she is so full of life and laughter and enthusiasm that my heart is filled with awe and I am humbled. If she is able to be strong enough to deal with this, so can we.”

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How I Got Through It

“One of the hardest things we learned to do that has turned out to be one of the best: live in the present.  Enjoy this moment with your child.  We learned to live life to the fullest.  This disease brought us to an awakening to fully realize how precious life is.” 

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Parking

Parking is one of the many hidden costs of treating childhood cancer.  Circle of Care provides free parking passes at CCMC. Ask your social worker for a daily, weekly or monthly pass.

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Hair

“At first our daughter was very self-conscious about losing her hair so we got her a wig. The Hair Club for Men provides wigs to children being treated for cancer. Our daughter got the wig. It looked very nice on her but after a few occasions she decided she was happier without it. Having the wig was very important however, because SHE got to decide whether she would have hair or not. That meant a lot to her.”

“Our daughter really liked getting and wearing different hats and scarves. It was a great gift to give her. We had fun making scarves at home and decorating them with diamonds and rivets.”

“My son lost all but about 30 strands of hair; he brushed it every day and was very happy to have it.”

“When the hair was falling out fast and furiously I suggested to my son that he show his dad by pulling it out, in front of him, just as he walked in. It helped us all to laugh.”

“My son said that once he lost his hair no one in the elevator or walking through the halls of the hospital would look at him. I learned to always look at the children, say hello and treat them as normally as possible.”

“A lot of friends and family sent hats. It was a great gift and much appreciated.”

“We had a hat party and everyone had to wear one.”

” Address the obvious. When our daughter’s gorgeous hair started falling out, we were all in denial at first. When it became obvious that it was indeed coming out, we casually mentioned it to her, to see if she noticed! Of course she had! She was waiting for us to tell her why! Again, we stressed it was only because of the medicine that was helping her to get better and stay better”

“Let your child decide how to handle their hair loss. My 3½ year old was very nonchalant about her bald is beautiful look. We always accentuated the positive, talking about how now we could see her beautiful eyes so clearly, how soft the new hair growth was, and I always made a point of kissing her on the top of her noggin!”

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What You Can Do When Their Counts Are Low

“There were many times when our daughter wanted to go out but could not because her counts were too low. One thing she really enjoyed was shopping on-line. Some of her friends gave her gift cards to stores and she could use them on-line. She had fun ordering the stuff and then would look forward to it coming in the mail.”

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Side Effects

” It surprised me to learn that there are some good ones. I spent more time with my son than I ever would have and got to know him and enjoy him in a whole new way.”

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Germs

“Though all of our friends and relatives were aware of the need to limit James exposure to germs, I was shocked on several occasions that people (even folks with medical experience who should have known better!) would visit with a sniffling child or worse.”

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School Issues

“The Leukemia and Lymphoma Society have an excellent “Back to School ” program they provide for free. It is incredibly helpful no matter what your diagnosis is.”

“There is a woman at our hospital that arranged a meeting with my son’s school, to explain to his teachers/principal/classmates about what he was going through and showed them a video. He still has kids ask if his cancer is gone (he was diagnosed 2 years ago with Leukemia). ”

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How To Help Them Day To Day

” I always kept a hospital bag packed with special toys. So when we needed to go in the middle of the night we were already packed.”

“Bring toys, pillows, etc. with you – anything and everything that will make you and/or your child more at home in the hospital. I brought Luke’s 2-3 favorite toys with us every time we went to the hospital.”

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How To Get Them To Take Their Meds

“Taking medicines is usually a big fight, but once you convince him that that the medicine needs to go down one way or another – for his body to heal, he’ll be more cooperative. Of course, I’m referring to a child old enough to comprehend the whole concept. My son was 7.”

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