This blog post is about our personal experience in hopes that it will help some other parents experiencing this rare situation of childhood cancer. Each year in America, an estimated 15,780 children (age 19 and younger) are diagnosed with cancer, which, out of 330,000,000 people, is only about 1 in 21,000 people. You might go your whole life without ever meeting someone who is a child with cancer or a parent of a child with cancer, so how are you to know what to expect?
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Thomas, age 4, a couple weeks after diagnosis but before chemotherapy |
Our son was four years and eleven months old when diagnosed with inoperable Stage 3 neuroblastoma, an 11-centimeter tumor sitting on his adrenal glands and encapsulating four major abdominal arteries. Our story of hair loss is Thomas's own story. Having gone through this as a mother just one time, I can envision that this experience would be different depending on at least four factors:
Our son Thomas has no concept of teasing, ugliness, or meanness from his peers. He has five siblings and has grown up homeschooling, not even attending a weekly classroom-style co-op (just because I've been too busy these last few years!). I really think he has (at time of this writing) never experienced being teased in his life, so he has no idea about "needing to fit in" or "what will other people think?" or wanting to dress and look like other five-year-old boys. I believe these circumstances helped Thomas be comfortable with his hair loss.
- the attitude of the parents projected on the child
- the age of the child
- the child being a boy or a girl
- the social background of the child
Our son Thomas has no concept of teasing, ugliness, or meanness from his peers. He has five siblings and has grown up homeschooling, not even attending a weekly classroom-style co-op (just because I've been too busy these last few years!). I really think he has (at time of this writing) never experienced being teased in his life, so he has no idea about "needing to fit in" or "what will other people think?" or wanting to dress and look like other five-year-old boys. I believe these circumstances helped Thomas be comfortable with his hair loss.
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| Thomas, age 4, a couple weeks after diagnosis but before chemotherapy |
We were told by his oncologist to anticipate hair loss starting between Days #18 and #21 of the first chemotherapy cycle (based on the particular drugs our son was receiving, as the various drugs differ in their effects). That's pretty much all the information we were given and I wanted a lot more. I searched high and low online and came away mostly having read about adults losing hair and only knowing that the hair loss pattern was "highly variable."
Note that not all chemotherapy drugs cause loss of hair! Your oncologist will tell you if your child's drugs are going to have that effect.
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| Thomas, age 4, a couple weeks after diagnosis but before chemotherapy |
When Did We Prepare our Son's Siblings About Hair Loss?
We told the other children (ages 13, 11, 9, and 7--did not tell the 2-year-old) before Thomas went to the hospital for his chemotherapy and then we asked them to keep it secret from him. In retrospect, I think we should have waited to tell them only because it wasn't fair or easy to ask them to keep it secret for a couple of weeks.
Each child processed their brother's hair loss differently. The seven-year-old was too young to care. The nine-year-old was probably the most upset. They all needed reassurance as we waited for it to begin and during the process.
When Did We Tell our Son He Would Lose his Hair?
When we went to the oncology clinic to prepare for chemotherapy, the Child Life Specialist came in to help us talk to Thomas about chemotherapy. We as parents had prepared him over the last couple of weeks at home, but were still so grateful to the Child Life Specialist to make sure we covered the bases well. I pulled her aside and asked her to tell Thomas about upcoming hair loss and she advised not to at this time. A little fellow this age has virtually no concept of time and it would be overwhelming and confusing to him to hear about hair loss that was three weeks away. Also, it could build up fear about having that needle inserted and medication injected: there was already enough to be nervous about without adding hair loss to it. This worked well for us and fit well with Thomas's age of only four years. I could anticipate that the older the child, the more one would tell him ahead of time out of respect for his understanding the global picture.We ended up telling Thomas about his upcoming hair loss while in the hospital for the initial induction of three days of chemotherapy. I (mom) really wanted the help of the Child Life Specialist in telling Thomas, while his dad felt quite comfortable that we parents could manage it. In retrospect, I do wish we had waited because the hair wasn't going to come out that soon. We could have waited till we were in the comfort of our own home, his personal surroundings. Alternatively, I still could have gotten the Child Life Specialist's help a week later on clinic day.
While in the hospital, Thomas attached to an IV pole, we met with a Child Life Specialist in the play room. While Thomas was stringing beads and making art, the Child Life Specialist told him about the upcoming hair loss. Thomas, who rarely stops talking, was silent and would not make eye contact. The Child Life Specialist did not push the matter, but told me quietly that some children need to hear the information multiple times and in multiple settings before they are ready to talk about it.
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| Doing art while ignoring the Child Life Specialist |
Later that day, while I went home to visit our other children, my husband stayed with Thomas and talked to him again about the upcoming hair loss. Thomas was profoundly and quietly sad. This was hard on our Mama and Daddy's hearts and we would have had an easier time if he threw an angry tantrum. Him being so deeply quiet and hiding his tears from us was so hard to watch.
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Thomas awake and silently sorrowful after his dad told him he would lose his hair |
Signs That Hair Loss Was Imminent
In the days or maybe a week before Thomas's hair began falling out, his hair became dry, brittle, stiff. It felt to me like he had hair product dried in his hair, so I gave him two baths that week in order to wash his hair, in hopes it would feel soft and babyish again . . . but it did not. I would run my hand through his hair and it would stay mussed, be stiff and standing upright, instead of falling easily back into place. It was then I searched on Google and read that hair becoming dull and brittle, losing its luster, was a common effect of chemotherapy.
How Did Mom and Dad Handle It?
Mom and Dad had a lot of strong emotions about the imminent hair loss! Of all the information the oncologist had to tell me about inoperable stage 3 cancer, his confirming that yes, Thomas would lose all his hair, made me burst into sobbing tears. It is ridiculous to admit that, but the doctor nodded and said yup, all the mothers react that way. A bald head on someone not elderly is such a sign of illness and death for humans. Luxuriant hair is a sign of beauty, of health, and is valued more by society than we know until it is gone.
We two parents were not always in sync about the process. When would it happen? Would it really happen at all? Maybe our boy would be an exception and keep his hair! Should we shave it early? (Strong feelings back and forth about that option.)
It was just a lot. All I can say is to keep talking to each other as parents about your feelings. No feelings are too stupid to talk about.
Chemotherapy Cycle #1 / Day #16 / Day of Hair Loss #1
On Friday, I was working at my computer when Thomas walked up to me and I ruffled his hair, as per usual. A cloud of hairs puffed off his scalp in a manner that I can best describe as a cat shedding its fur at the beginning of summer. PUFF!I took a deep breath, smiled, and walked Thomas to the bathroom. I did not cry in that moment, but told Thomas calmly, "Look, honey, it looks like your hair is starting to fall out now, like we talked about." He looked in the mirror, mussed his hair intentionally (more of which puffed all over), then ran off to play with nary a word. Did he not care? Was he upset and hiding it? I wondered and worried.
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| Thomas's hair was starting to stick out in a mussed way, brittle and stiff. |
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| I brushed Thomas's hair at bedtime. |
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| Hairs in the tub after washing his hair |
Chemotherapy Cycle #1 / Day #17 / Day of Hair Loss #2
On Saturday, we took the children fishing in the morning. Thomas's hair was thinning, made most obvious when his hair was sweaty or, in the photos below, wet from the swimming pool.
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| Hairs falling out and sticking to his neck |
Of note on this day was that in the evening I was helping Thomas into his pajamas and he told me out of nowhere, "Mama! I'm not sad about my hair falling out anymore!" What his deep thoughts were, I don't know, but he was not feeling sorrowful at that time.
Chemotherapy Cycle #1 / Day #18 / Day of Hair Loss #3
Sunday was Thomas's fifth birthday and we had a drive-by celebration (due to his compromised immune system and ANC numbers of only 200) in which 60 loved ones drove by and dropped off cards. Meanwhile, his hair was falling out all day. |
| Thomas's pillow case in the morning |
When he had woken, I had realized I would have to wash his sheets and pajamas, as they had a patina of itchy hairs on them.
I gave Thomas a bath that night and hair was coming off in my hands in significant amounts. Hair was swirling all over the bath toys.
From the front, Thomas's hair might look a little thin and fluffy but almost normal at a glance.
However, a bird's eye view revealed it was very thin with completely bare patches forming. The oncologist had said that some kids lose all their hair on top first while retaining a corona, like a monk with a tonsure, and it looked like Thomas's hair might follow a similar pattern.
While I was reading aloud to the children at breakfast, Thomas interrupted with a bit of exasperation and said, "Mama! My hair is falling out all the time!"
I responded, "Yes, honey, it is falling out faster today, isn't it? Is it bothering you?"
"Yes!"
I offered, "Thomas, I was reading an article that told me an idea that might make you more comfortable. Do you want to hear it? I read that I could give you a bath once or twice a day right now and rub your hair with conditioner, then rinse it, and the hair will fall out much faster so the itching stops sooner. Would you like me to try that?"
He exclaimed, "Yes!" and ran away from the table. I called him back and said we weren't even done eating. He wanted his bath that very moment, but I did convince him to give me five minutes to eat.
Then I walked him upstairs, without even cleaning up from breakfast for our family of eight. When we got there, I paused before the bath and sat on Thomas's mattress on the floor of our master bedroom, where he began sleeping when diagnosed with cancer and where he has declared he is going to sleep "until my lump is gone." On the bed with him, I said, "Now honey, a few days ago, Daddy offered to shave your head to make you feel more comfortable, but you did not want that. Do you want that now?"
Immediately Thomas said yes. He had never had a buzz cut as I had given him only scissor cuts, so he asked to watch a video. I pulled up a video on YouTube of a little boy (not a boy with cancer on chemotherapy) receiving a buzz cut. Thomas wanted to confirm that it would not hurt and then he was ready to go.
In fact, he was so ready that he wanted me to buzz his hair immediately. Yet his Dad was at an appointment and I knew he would want to be present for this symbolic event! I called his dad and asked how far away he was and was grateful he would be home in ten minutes. I could get Thomas to wait that long.
Our oncologist had told us not to use the bare metal but to use a clipper guard, "at least a size No. 1." A very helpful article written by a hairdresser of 25 years (click here) suggested using a No. 2, so we decided to go with a No. 2 out of an abundance of caution.
The after photo shows the spots where Thomas still has denser hair and the patches where it is already very thin or bald.
After buzzing his hair, I used a lint roller to remove more hair. I continued to wash his hair nightly for a few nights to help the process along gently.
My husband and I have loved watching Thomas take the lead with his feelings and our trying to avoid him having preconceived notions about hair loss. On the day he wanted his hair buzzed off, I bathed him again at night to encourage the loose hairs to fall out. He stood in front of the mirror laughing and said, "Mama, look at me! I look so different!"
"Yes?"
"My hair is lighter. I like lighter hair. I don't like dark hair."
Soon after he was with his dad looking in a mirror and told Daddy, "My light hair makes me look fancy."
"Oh yes, Thomas, I think so, too. I think your new hair looks handsome."
Thomas looked thoughtfully at his reflection and concluded, "I agree."
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| Thomas's sheets in the morning |
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A blurry photo showing the degree of baldness on top with hair still thick around the corona |
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| Sweaty hair at his birthday celebration |
I gave Thomas a bath that night and hair was coming off in my hands in significant amounts. Hair was swirling all over the bath toys.
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| Hair in the tub during bath time |
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| Hair coating the tub after bath time |
Chemotherapy Cycle #1 / Day #19 / Day of Hair Loss #4
On Monday, hair loss accelerated exponentially and there was much hair on Thomas's pillow case and sheet. I would wash them again before bedtime.
From the front, Thomas's hair might look a little thin and fluffy but almost normal at a glance.
However, a bird's eye view revealed it was very thin with completely bare patches forming. The oncologist had said that some kids lose all their hair on top first while retaining a corona, like a monk with a tonsure, and it looked like Thomas's hair might follow a similar pattern.
While I was reading aloud to the children at breakfast, Thomas interrupted with a bit of exasperation and said, "Mama! My hair is falling out all the time!"
I responded, "Yes, honey, it is falling out faster today, isn't it? Is it bothering you?"
"Yes!"
I offered, "Thomas, I was reading an article that told me an idea that might make you more comfortable. Do you want to hear it? I read that I could give you a bath once or twice a day right now and rub your hair with conditioner, then rinse it, and the hair will fall out much faster so the itching stops sooner. Would you like me to try that?"
He exclaimed, "Yes!" and ran away from the table. I called him back and said we weren't even done eating. He wanted his bath that very moment, but I did convince him to give me five minutes to eat.
Then I walked him upstairs, without even cleaning up from breakfast for our family of eight. When we got there, I paused before the bath and sat on Thomas's mattress on the floor of our master bedroom, where he began sleeping when diagnosed with cancer and where he has declared he is going to sleep "until my lump is gone." On the bed with him, I said, "Now honey, a few days ago, Daddy offered to shave your head to make you feel more comfortable, but you did not want that. Do you want that now?"
Immediately Thomas said yes. He had never had a buzz cut as I had given him only scissor cuts, so he asked to watch a video. I pulled up a video on YouTube of a little boy (not a boy with cancer on chemotherapy) receiving a buzz cut. Thomas wanted to confirm that it would not hurt and then he was ready to go.
In fact, he was so ready that he wanted me to buzz his hair immediately. Yet his Dad was at an appointment and I knew he would want to be present for this symbolic event! I called his dad and asked how far away he was and was grateful he would be home in ten minutes. I could get Thomas to wait that long.
Our oncologist had told us not to use the bare metal but to use a clipper guard, "at least a size No. 1." A very helpful article written by a hairdresser of 25 years (click here) suggested using a No. 2, so we decided to go with a No. 2 out of an abundance of caution.
The after photo shows the spots where Thomas still has denser hair and the patches where it is already very thin or bald.
After buzzing his hair, I used a lint roller to remove more hair. I continued to wash his hair nightly for a few nights to help the process along gently.
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Watching TV with big sister |
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Napping with Daddy |
My husband and I have loved watching Thomas take the lead with his feelings and our trying to avoid him having preconceived notions about hair loss. On the day he wanted his hair buzzed off, I bathed him again at night to encourage the loose hairs to fall out. He stood in front of the mirror laughing and said, "Mama, look at me! I look so different!"
"Yes?"
"My hair is lighter. I like lighter hair. I don't like dark hair."
Soon after he was with his dad looking in a mirror and told Daddy, "My light hair makes me look fancy."
"Oh yes, Thomas, I think so, too. I think your new hair looks handsome."
Thomas looked thoughtfully at his reflection and concluded, "I agree."
Chemotherapy Cycle #1 / Day #20 / Day of Hair Loss #5
Thomas was so much more comfortable after buzzing his hair short. I used a lint roller once during the day and washed his hair at night.
In Conclusion
In the following couple of weeks, Thomas's hair remained like peach fuzz without falling out completely. He did his second cycle of chemotherapy, so it may fall out all the way two to three weeks after receiving that chemo, in which case I will update this blog post. The oncologist did say that some children retain some hair, either because of their particular hair type or because of their lower dosages of chemotherapy.
Thomas does not seem to care on whit about his hair loss and he tells us that his hair is "fancy and handsome!" He does not feel a need to wear hats, except for fun, unless I tell him that we will be out in the sun and he has to choose between sticky sunscreen on his scalp and a hat: then he chooses the hat!
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Receiving his second dosages of chemotherapy |
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Receiving his second dosages of chemotherapy |
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| Thomas grinding up his own pills |