I've sat down to write this post several times & been too emotional to even know where to begin. But, many of you (family & friends) have asked about Jude's diagnosis and prognosis and I figured the best way to answer all the questions was to just write one post about it.
I'll start back at the beginning & try to go from there... this may get long winded & I may bounce around, so bear with me.
Back in February we took the boys to our local barber for a haircut before our upcoming trip to Disneyland to celebrate their birthdays. The barber is Russian and there is a language barrier between us at times. I noticed while he was cutting the back of Jude's hair there appeared to be two little bald spots about the sizes of dimes & I assumed at the time the barber had nicked him by accident. I paid & left feeling incredibly frustrated & swearing I would never go back there again. That night I took pics & sent them to my mom and close friends bashing this poor Barber.
Fast forward to June & we take the boys to a new barber shop to get a trim (I love this place & we have continued to go there since). I had assumed the nicks from the barber had grown back (Jude's hair grows so fast & was long enough that it was actually covering the spots). Once his hair was trimmed short enough in the back I noticed one spot had filled in, while the other appeared larger. The owner of the shop saw the spot on the back of Jude's head & said "That's not from a haircut. Do you see the lack of stubble & how it feels like a forehead. I hate to tell you mom, but that looks like Alopecia. I had that in my early 20's and a few steroid shots to the scalp & it grew back. You may want to take him to his doctor to get it looked at."
I'll save you the boring run around it took to get an appointment. How we first saw an adult dermatologist who dropped the "C" word and then quickly took it back. And us calling several times to get squeezed in to a cancellation appointment at Phoenix Children's.... and cut to the part where we see a pediatric dermatologist (FINALLY) and she (plus her 2 resident students) confirm that it is indeed Alopecia.
They looked at Jude's hair follicle under a special light, magnifying glass thing & described his hair as "typical Exclamation Point Hair". At the time he only had that one patch so she diagnosed him as having Alopecia Areata. She wrote up a prescription for a topical cream and said to use it sparingly and return for an appointment in 3 months. She also ran a bunch of blood work to calm my spirit and all results came back normal; no cancer, no iron deficiency, no thyroid problems, nada. He's healthy as can be. As a mom, I wasn't hoping for a negative result, but I was sort of hoping she would come back saying it was some specific something or other that had a definitive treatment plan. But as I'm finding out more & more, Alopecia is not black and white. It's all shades of unknowns and uncertainties.
We left that appointment feeling disheartened. Yes, we finally had a definite diagnosis, but the prognosis was unknown...
He could have just that one spot forever, it could grow back. It could grow back & then fall out again. He could have other triggers that cause him to lose all his hair, body hair included. He could lose it in perfectly symmetrical circles or in patches. Only time would tell.
It's been almost 2 full months and sadly, Jude's hair is falling out and thinning at warp speed. Not only has that spot continued to spread like wildfire, but he's since accumulated several other bald spots. He's even lost the majority of the hair on his arms and legs (which would then throw him into the Alopeica Totalis, meaning loss of total body hair as well). It's at the point where if you even touch his head, your hand is covered in hair. It's all over his pillow and covering his car seat. He twirls his hair to fall asleep & will stop for me to wipe the hair off his hand before going right back to twirling. He's even started twirling my hair for comfort before nap time and bed time. And a few times we've found him snuggled up in August's bed, playing with August's hair.
We've been pretty diligent about applying the cream each night. We have to do it after he's asleep because it does sting (I've tried it on myself|). It's meant to irritate the skin so the T-cells stop attacking the hair follicle, allowing the hair to re-grow. But a side effect is that it makes his scalp sensitive and the skin much thinner (you can now see a bunch of little veins on the bald spots). If I'm completely honest, Jeff applies it most nights. It breaks my heart to have to do it & luckily he has offered to be the stronger parent in that regard. There are a few areas where there is stubble of re-growth, but the hair is really brittle and crumbles, similar to hair after you've used Nair.
I have had this lingering hope that he will be healed.
I feel myself obsessing over his hair. I'm constantly checking him for new spots and taking pictures to document the hair loss changes. I even catch myself checking August's hair for spots. It's probably borderline unhealthy the about of time I spend thinking about his hair and imagining him bald. I stay up late at night looking at pictures of his curly hair. I'm grieving.
I know it's "just hair" but to me its soooo much more than that. I look at this handsome boy, with the sweetest little heart and I just worry about him being teased or even having a hard time getting a girlfriend. And I try my best to not get emotional in front of Jude or talk about it in front of him.
I did speak with a child psychologist at my work and she had some wonderful advice for me on how to handle this with him as the hair loss becomes noticeable to him. She loved the idea of Jeff shaving his head and said that will be helpful to tell Jude he just has the same hair like daddy. We're currently on the hunt for a book featuring a bald super hero or a story to help him understand that even though he's bald (er, will be soon) that he's still just as special and as important as the next kid. Most of the books I'm finding are geared towards little girls. (Blonde today, Bald tomorrow. The bald Rapunzel, etc.) And the only bald cartoon character I've found completely annoys me! Haha. Other parents truly understand my distaste for watching Caillou. The kid just whines non-stop. Not exactly the "hero" I want Jude looking up to. Even though my research revealed the shows creators left him bald on purpose for children with childhood cancer or Alopecia to be able to relate.
We've already had a few odd incidents with strangers in public that have gotten this momma bear a little fired up. One lady pointed at Jude and joked "oh, did someone get a hold of the scissors?" to which I simply responded, "No, he's actually going bald". The poor lady looked mortified and embarrassed and as she walked away I was kicking myself. I felt like I was too rude & should have just said "Yes. Yes, he cut his own hair" and left it at that. While at the Mall playground 2 weeks ago Jude & a little boy accidentally collided and both tumbled to the ground. When the mom was helping up her son she said "Be careful, that little boy is sick. You don't want to hurt him". Then later on I heard her say to a few other women she was sitting with, "I can't believe they have him out in public, I wonder if its ok for him to be playing while he's going through chemo." I don't want people to assume he's sick and coddle him. I want him to be strong and an athlete and I want everyone to treat him just like any other little boy. Is that too much to ask?
On the other hand, I the most amazing thing happen at work the other day. I have a student with Alopecia and she took the time to sit down and talk with me about her experience and what to expect. I call these little moments a "God wink". I promise He put her in my class on purpose. Out of respect for her privacy I won't share much of what she shared with me... but I would like to brag that she is an amazing athlete, going to college on a FULL scholarship and she is just darling!! She has the prettiest smile and most adorable personality. In all honesty, when talking with her I completely forgot she was wearing a wig and just focused on her pretty eyes and smile. She was encouraging saying she has never experienced any bullying from her peers about her hair (granted she was older when she lost her hair and past the name calling and teasing age). She said the hardest struggle is finding the words to say to people when they ask her about her wig or assume she is ill with cancer. Although she's never been teased by peers, she is hard on herself about it. She just lit up when talking to me & expressed that sharing her story with me was very cleansing for her. She shared the pain of losing her hair at 13 and how sometimes she looks in the mirror and doesn't think she's pretty. That hurt me the most. She joked "you've met me at a really good time, I've come really far the past few years and now I'm done searching for a cure and just switching my focus to trying to be an advocate and a voice for Alopecia that little girls can look up to and realize they are beautiful even without hair & eyelashes". I broke down crying when she told me it was okay to grieve and cry and offered her moms number for me to call as support.
Talking with her gave me a strange sense of peace and acceptance.
I've been pleading with God to just heal Jude and let his hair grow back. But after talking with her, my mindset has completely shifted to now focusing on how can I build up this beautiful boy so he grows up a confident man who never doubts himself.
While I do appreciate all the outpouring of support from friends on social media and all the suggestions of how to fix Jude, I feel in my heart like it's time I just stop obsessing over "fixing" him and just start appreciating him for all the other amazing things that make him Jude, besides his curls.
My current struggle is weather or not we should just shave his head or let his hair continue to gradually fall out. The child psychologist suggested we just let it be. She thinks if we cut it, he might end up "blaming us" or associating us with "taking" his hair. But it breaks my heart to see Jeff break down in the mornings after frustration over trying to get Jude to sit still so he can style his hair in a way to try and hide his ever growing bald spots. He just noticed the large spot the other day in the bathroom mirror & was rubbing it. When I asked him if he knew what that was he said "You cut my hair mommy. Bad mommy using scissors". He's remembering the home haircut/trim I gave him back in February. Before we knew about any of this & I was trying to style his longer hair. I tried explaining it was just like Daddy's hair & he said "no, I don't want Daddy's hair, I like my hair. See its Brown like yours mommy." I hate to think that as he continues to lose it he will continue to blame me, but then again, I already blame myself.
Tonight I told Jeff I would like to cut part of it to save in a baggy in his baby book as his "last hair cut" and put it right next to his "first haircut". Does that sound completely nuts? Jeff thinks so, Ha! But, the thought of having that last ringlet saved is oddly comforting to me. Jeff's also on the side of let's just let it naturally fall out, vs. cut it all off so I may just need to sneak a ringlet while Jude's sleeping one night.
If you've got it in your heart to pray, please pray for our sweet boy.
Pray that he finds a new source of comfort once he's lost his hair.
Pray that he has the right, sweet, response for any kid that may question why he's bald.
Pray that strangers are kind.
Pray that when he looks in the mirror, he thinks he's handsome.
Pray a prayer of thanksgiving that it isn't something that causes him physical pain, while praying it won't cause emotional pain.
Pray for us as his parents that we might have the right words of encouragement and strength when he needs them.
Pray he makes some wonderful friends in school.
Pray for my adorable student that she can follow her hearts passion of using her disease as a stepping stone to offer encouragement for other's with Alopecia. And pray that when she looks in the mirror she sees the beautiful girl I saw when I was talking with her last week.
The stains on his pillow case are from the greasy cream we apply to his spots each night.
