Alopecia. What? Why? How?.... The Journey of Haley

Our youngest daughter, Haley, the Cheerleader, the Gymnast, the American Girl Doll lover, an all around cool little DIVA, was diagnosed with Alopecia about eight months ago. Keep in mind, we never knew what happening when it started back in 2011 (December). I initially noticed a very small bald spot in Haley's head (near the top on the right side) but "assumed" I'd pulled her hair too tight in that one spot. That was not the case; my baby's hair continued to fall out. Bald spots began popping up up everywhere. I sought advice from her hairdresser who braided her hair for me, from my hairdresser, from my mom, mother-in-law, blogs, etc. You name it, I looked it up!

I have to be very honest and say that going through this with my baby was very challenging. I think my kids re the best things since sliced bread and I invest all of me into raising them and making sure they're "good". To know that my baby who is known for her energy and enthusiasm was feeling sad watching her hair fall out and not having answers was very difficult. Not to mention, my vanity was at stake as well. (I'm being honest) I was like..."what am I going do? my baby's pretty hair is falling out!"

Haley's hair has always been fine and thin (like Ed's hair) but their were never any issues with it, it was always healthy like her sisters' hair.
Haley has always had a head full of hair..

The following photos were taken around March/April 2011
 Haley's hair several months after finding the first bald spot
 I washed it...
Here, I had her hold it just so we could see the actual size of the spots
They grew bigger and bigger...

I began trying different products like Dr. Miracle, Shea Moisture, Olive Oil, Baby Don't be Bald.... the list went on and on. I even tried home remedies that were suggested like: warm olive oil in the microwave and use a cotton ball to apply it to the bald spots, Glover's Mane, etc...
Just a "few" of the products used...

Although her hair was falling out, it was only falling out in the middle so I could disguise it. Haley was really worried about being made fun of and I was worried about her self-esteem taking a dive. I had to do every and anything in my power to make sure my baby knew that she was still the same remarkable girl before these bald spots began to appear. Boy, did I have my work cut out for me and I didn't even know it yet!
 Cheering for several months out of the year, Haley's hair is REQUIRED to be in one ponytail.
 This made disguising the bald spots a breeze.
 She didn't let those bald spots stop her from doing what she loves: CHEER
I made sure she knew she was still as Glamourous as ever. I told her: "True divas can make any hairstyle work!"

Even on picture day of the 2012-2013 Season, we pulled off disguising those spots because Haley wanted her pictures to be Big Girl pictures since it was "officially" her first season cheering as a NON-MASCOT!!!!
I think we did pretty good! She looks just like a BIG GIRL :-)
After a FULL day of traveling to her own game, she came home, changed, and went out to support her Sister-Friend Boogie at her game! This little girl eats, sleeps, and breathes CHEER. It was important for me to make sure things stayed as normal as possible. Check out her leopard boots! Get it Haley!!!

Eventually, we could no longer disguise the bald spots. We had to start explaining; that was so difficult. Haley did not want me showing or telling anyone but I had to talk to her and explain why we needed to let her Coaches know, her teacher know, and even family who lived outside of our home. My baby was so worried what people would think about her. The HARDEST part ever was weekly washes became a horror. Every time I'd wash or comb my baby's hair, it fell out like pulling a cotton ball apart. She would cry and I would want to cry with her, but I couldn't. I had to remain strong and tell my baby that everything would be okay; that no matter what, she was still as gorgeous as ever and that we would find a way to fix this. My heart ached for my baby. The truth is, I didn't know why this happening. 

The Dermatologists she was regularly seeing, kept prescribing all sorts of medicine (topical). I took my baby to about four (4) different dermatologists and I demanded that she an endocrinologist to cover all bases and find out if it was something internally wrong with my baby. Ed and I both never said it out loud until one day he couldn't hold it in any longer. He said, "I'd hate for this to be something bad..." I finished his sentence with, "I don't want my baby to have cancer". We sat there in silence for about 2-3 minutes (literally) and immediately got up and reached for the laptops! He began doing extensive research and so did I.

My next email to Haley's primary care physician was VERY specific and I demanded tests which Ed found online. Also, during his research, he came across ALOPECIA. I'd heard of it, but never took an interest in it. Why? Because it wasn't knocking on my front door until NOW! He found this wonderful site about Alopecia Areata . When I clicked on the link he sent me... I could not believe my eyes! There were so many babies like my baby who were suffering from this disease. 

We read and researched, and read and researched. I became very proactive for my baby in regards to doctors. I specifically asked for a Black dermatologist because I had doctors telling me that "WE" put too much fake hair in "our" kids' hair and "we" comb it too tight. Haley would get hair braided on occasion but not always with synthetic hair; even when I used synthetic hair, it never caused balding. I wanted someone who understood Black hair to talk to us about our Black hair. If you know me, you know that I will travel to the ends of the earth for my Precious Cargo, all four of them. So, asking for I wanted was no problem at all.
There was no more hiding it...
 We needed to share with those closest to us and...
 We needed answers. IMMEDIATELY


Haley visited an endocrinologist to ensure that everything on the "Inside" was working and functioning properly.
 No matter what, I made sure my baby was always in good spirits.
I reminded her to be thankful for life and everything else she was blessed to have. This journey with my baby also taught me something about myself as well...

The hardest part about the doctor visits came when she visited the Dermatologist and we learned that she needed injections in her head. OUCH! The first time Ed took her because I was working and he phoned me to tell me she had received these injections in her head. My stomach turned flips at the thought and I vowed to never miss another appointment with her no matter what.

This is what Haley's head looked like after receiving injections in her head

When I say holding my baby down (which was very necessary) and watching her get these injections and begging me to make the Dr. stop made me cry... I shed a few tears. Not where she could see me but I held my baby and I prayed over her right in my arms. I felt dizzy and lightheaded as if it were happening to me. However, when I looked at my baby's hair and saw this....



I knew we had NO OTHER CHOICE.

Haley endured about three different injection sessions. Each visit was more difficult because she knew what was coming. To make it somewhat better, I promised American Girl Doll clothes and accessories. No wonder her collection is so huge!
Haley underwent various treatments such as steroid prescription, topical prescriptions, and Ultra UV Ray treatments four days a week. Whatever it took, we did it. In the meantime, Haley had to wear hats. Ed went online and ordered her all sorts of hats; shiny ones, plain ones, fancy ones. Prettie purchased several fedoras for her and shipped them here from AZ. My sis in law Mia purchased hats for her as well. Picking outfits for her was no longer complete without a hat! The Dr. gave us a note for school so Haley could wear hats to school as well.

The Mindless Behavior Concert...and a hat!
 Cheer 2012-2013 Christmas Party...and a hat!
 Cheer Competition in Vegas...and a hat!
 My Baby still performed her heart out...with a hat on!
 Just let me say that our Cheer Director, Charnetta, her Coaches Rickeita and Kenyatta, and the parents of her teammates were so, so supportive of Haley. I asked if she could wear a hat to competition and they said, "If SHE wears a hat WE wear a hat. The entire team wore hats to competition to perform in, in support of Haley. Ed ordered the hats for the Cheer performance and I had them blinged with the word JETS on front. For the Hip Hop performance, the coaches ordered hats as part of their routine costume so it all worked out perfectly. For that, we will be forever grateful.

Haley is learning to adjust to her new look. There was a time when she refused to leave the house without a hat on her head. Look at her now...

Her hair has began growing back. For one week, I experimented by styling her hair in a DIVA MOHAWK. She left the house five days with no hat on!!!
 The following Monday, we headed to the Barber Shop and made it official!
I LOVE my BABY and I LOVE her Mohawk!!!!!

Also, Prettie researched and found this shampoo on Amazon. I've only been shampooing her hair with this. It's amazing!!!
 What I have learned through this journey with Haley is that there is no ONE specific way to deal with Alopecia Areata. You have to keep trying and never give up. You have to pray. You have to have excellent support in and out of the home. You have to know that no matter what, true Divas shine! My baby is one Glamourous Diva and she refuses to let anything (including Alopecia) stop her SHINE!!!!

Thanks for taking time out to read this. I asked Haley if she approved before I wrote this and shared it publicly. I explained to her that some people, like we were, have no clue what this disease is and this may help them. She agreed, and so it is...

Until we chat again...

Don't forget I'm on FB as well at NickiesNiche

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Comments

  1. This has truly been a long journey for Haley as well as the rest of your family. I'm so happy that this experience has come full circle and you were all willing to share thus experience with others. As you mentions people may not be aware or know what do if they find themselves or someone they love in this predicament.

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  2. Wow! I can't imagine the roller coaster you and your family have been through. I was almost in tears when you and your husband thought it was cancer. That had to be the scariest silent moment ever! I'm so happy you are making it through and you have an amazing community to support you. You're a strong mother! I salute you!

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  3. Wow Darrylon!! What an amazing story and so brave of your Diva to let her story be heard and shine!! It's the hardest job in the world to be a parent, and even harder to find a village to help in your journey in raising a child! The support you received brought tears to my eyes and made me even more proud of my family; my cousins Rickeita and Kenyatta! Let me tell you, that Haley never let it show....she is truly one in a million and by far stronger then she should ever have to be at her age! I love your strength, your honesty, and your support system! I must say, Haley rocked her new haircut, made me think about cutting mine.....but I want her to know that with or without a trendy hairstyle she was already Beautiful!! Keep inspiring others! Your Cheer Family Coach Tonika

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