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Madeline’s Toy Box: A story of a Hemangioma & Phoenix Children’s Hospital

madelines-toy-box-fund

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A toy box: Just a simple way to ease the fears of children going in for treatment at Phoenix Children’s Hospital.

My heart breaks every time I take my daughter to PCH and I see all the hundreds (and thousands) of innocent children getting treated for conditions that are serious and many who are terminal. I see the children trying to be children, watching Disney movies while they fight their sickness. I see the parents trying to keep a smile on their face while hiding their fears and heartbreak. My goal is to raise $10,000 by Christmas for a toy box at check-in, so in-patients and out-patients alike can pick out a toy while their parents check them in for their appointment. Just a little toy to show cheer and ease a child’s fear. This fundraiser is my way of saying Thank You to PCH for easing my own fears as a new (and scared) mom. If you would like to donate, please visit this link.

The story behind Madeline’s Toy Box.

It started as a scratch. My daughter was born with just the smallest of red marks in between her eyes. It was so small, we didn’t think twice. The first few weeks went by and it slowly started to get a little redder by the week, but still barely noticeable. Then week three hit and it started to grow. I asked our pediatrician and he brushed it off saying it would go away. It kept growing. I asked again and I got the same answer. It continued to grow, getting redder by the day. I asked about it a third time and this time, I asked if I could see a specialist, but the answer was still no. Finally, I asked my own dermatologist and she gave me the name of this red growth taking over my sweet newborn’s face.

Hemangioma. Just the word sounded scary. I anxiously did the one thing they always tell you not to do. I Googled it. I had no other choice. With tears in my eyes, I spent hours and days reading every article imaginable. I learned about the condition. I learned that it wasn’t done growing, it was only just getting started. I learned that it could get bigger, redder and more protruded by the day. I saw pictures that made me cry. I read stories that made my heart ache. I learned that it takes a year to finish growing and years after to fade, or maybe not at all.

I decided to take action. I called Phoenix Children’s Hospital and asked to make an appointment to see a dermatologist. They found an opening the very next day. I drove across town to the Mesa location and I sat in the room anxiously waiting and hoping to learn the unknown. We met with Dr. Gildenstern who walked in with a sweet temperament, a cheerful smile and a beautiful heart. She saw the fear in my eyes, she heard the desperation in my voice and she gave me the comfort, support and knowledge I had been praying for. “We always treat hemangiomas when they are on the face.” I will never forget those words.

The wonderful team at PCH dermatology proceeded to treat our daughter and continues to do so. The treatment has worked wonders. Her hemangioma has faded and reduced drastically in size. After a year of being treated, she is now off the medicine and now we wait to see how much will fade on its own. We are one of the lucky ones. Our daughter’s hemangioma is nothing compared to what it could have been. We caught it early enough to slow and eventually stop the growth. I am so grateful to PCH and to Dr. Gildenstern and her team. Although very visible to the world, our daughter’s condition doesn’t affect her health or her overall well being and for that I also thank God every single day.

This situation has taught me to never question my instinct, to always get a second opinion and to always fight for my child’s well being. Do Moms know best? Depends on who you ask. But do Moms fight the hardest for their child’s well being. You bet we do. You bet we always will.

What I’ve learned about Hemangiomas

(in my own words. I am not a medical professional in any way, so please consult a medical professional if your child has this condition).

  • What is it? A Hemangioma is a benign tumor that’s built of cells that line the blood vessels that keep reproducing. For whatever reason, they think they need to grow in one area of the body consistently for upwards to a year. It looks like a big blood blister. They vary in size and shape. A Hemangioma can appear anywhere on the body, but many appear on the face.
  • There are two types of hemangiomas. One type is flat and only on the surface of the skin. It’s very dark red in color (the color continues to darken over a year and then begins to fade). The other type lives inside the skin and protrudes out. The growth of this one makes it puff out so that it looks like a very swollen section of your skin (or a very big bug bite). Many children have both types (like our daughter).  
  • Treatment – most doctors will not recommend treatment unless the hemangioma is on the face or unless it’s located somewhere that gets wet or can affect a child’s spine (or is internal).
    • Two Medicine Treatments (our daughter was on both, first the Timolol and then the Hemangiol)
      • Timolol – this is a topical gel that treats red, surface Hemangiomas. The goal for this gel is to stop the color from darkening and to even potentially fade it. Randomly enough, this is a beta blocker used for blood pressure and because of this, a baby has to be closely monitored and must eat every six hours until six months and every eight hours if over six months of age.
      • Hemangiol (also known as Propanel) – this is another heart medicine used to treat blood pressure, but it also helps internal Hemangiomas that protrude out. The goal of Hemangiol is to stop the growth. However, other positive benefits of this medicine is that it lightens the hemangioma drastically and also shrinks it. Similar to Timolol, a baby has to be closely monitored and must eat every six hours until six months and every eight hours if over six months of age.
  • It looks a lot scarier than it is. Children don’t feel pain from it, it doesn’t randomly bleed and it is just a part of them.
  • Always see a specialist – my personal recommendation is to always see a specialist. While most hemangiomas are visible, many are internal so if your child has multiple ones, they may need to be checked for internal ones that live on the organs. Even if it’s hidden on your child, it’s best to have it checked and monitored over time. Our insurance covered her medicine and our insurance would also cover any procedure we would do to get it removed if we decide to ever go that route.
  • What caused it? Nobody knows. All that’s ever been figured out is that it typically happens to caucasian females and especially to children born prematurely with a low birth weight.
  • Will it go away? That all depends on the child. They say it fades/shrinks 10% a year after the first year. Some fade away completely and others have to be lasered/removed by a doctor if that’s what the child/parents decide they want to do.

I had never heard of Hemangiomas until my daughter was born with one. Many pediatricians aren’t educated on hemangiomas because they are rare. The support system for hemangiomas is extremely limited and the general public knows nothing about this condition, which leads to looks, comments and opinions. My hope is that one day we can educate parents on this condition so that if it happens to them or someone they know, they know what to do and how to proceed. The growth period for a Hemangioma is fast and it can triple in size within days. Parents have a very short window to get treatment and to stop the growth. Asking questions and dealing with medical roadblocks won’t help.  Please share this post with your family and friends in hopes of spreading awareness for this condition.
Click here if you would like to donate to the PCH fund for Madeline’s Toy Box.

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