Monday, August 27, 2018

What Is a 504 Plan and Why Do I Need It?

Special education. Those two words strike fear into the hearts of many parents. “But my son doesn’t need special ed!” I know, because I was one of those moms.
When my oldest son Julian, now 22, was in elementary school, the idea of a 504 plan — based on a federal law requiring students with disabilities to have access to educational resources — was brought up. I was incensed when I saw that hemophilia was listed under special education. Julian’s hemophilia was never a big issue. It still is not. He didn’t need a 504 plan, and he never wore a helmet. He was fortunate. But when my mighty warrior Caeleb came onto the scene, I saw things in a much different light.
To read the rest of the article, click here.
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Monday, June 11, 2018

Showing Appriciation for the People Behind the Scenes

I am a musician who has played in orchestra pits, wind ensembles, chamber groups, and orchestras. I even played antiphonal oboe one Christmas! Music is powerful. It transforms you and allows you to escape for a few hours from the regular happenings of the day.
However, most people don’t realize the work that goes on behind the scenes to produce a performance. Those people you never see set up chairs, create the programs, find advertisers, sew costumes, and run sound and lighting. Someone is always working quietly in the background for the greater good.
To read the rest of the column, click here.
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Sunday, May 6, 2018

Moving is Complicated: Here Are A Few Tips To Help You Plan

When my sons were born and diagnosed with hemophilia, we lived in Houston and had access to the Gulf States Hemophilia and Thrombophilia Center. I had access to treatment and never considered that I’d be kept from it. When my youngest, Caeleb, was only 7 months old, my husband changed careers and we moved to southern New Mexico. The closest treatment center was the Ted R. Montoya Hemophilia Treatment Center, three and a half hours away in Albuquerque. We had everything under control and took it one step at a time.
Julian did not have severe issues, so with factor and regular infusions at home, he was in good shape. But my mighty warrior Caeleb began to have issues after he was diagnosed with his inhibitor at 11 months of age. We moved to a smaller town only two hours from Albuquerque. This was when he began to have more complicated issues. After three years in that small town, my husband told his supervisors that he needed to be closer to Albuquerque. They thought that all hospitals have hematologists, so why wouldn’t a West Texas town be OK? So, we had to do some educating.
Click here to read the rest of this post. 
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Saturday, April 7, 2018

The Last Bucket

I have a few rituals on Sunday evenings. I check to make sure clothes are washed and ready for the week, I set the menu so that we have a plan for dinner throughout the week, and I fill the infusing bucket and bring it to the main floor of the house. When these things are in order, the chance of my week going well is pretty good. If one of these items is not in check … then all bets are off.
(Photo by Cazandra Campos-MacDonald)
Daily infusions have been a part of our lives for years. Caeleb catches the bus at 7:20 a.m., so having all the items needed to access his port close at hand is very important. Click here to read the rest of the column.
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Tuesday, March 6, 2018

The Hemo Mama Bear Olympics

There are some moments in my life while raising two sons with severe hemophilia that I have thought, “Wow! You, Cazandra, have just won the gold medal in the Hemo Mama Bear Olympics!” And there are other times I failed so miserably that I would not have even made the team.
When you think back to your child’s bleeding disorder diagnosis, the overwhelming grief, anger, and doubt flood your heart and soul, and you wonder how you will handle it. You start to educate yourself. The first bleed happens, and you don’t fall apart. All the firsts come and go, and you slowly get your footing. 
Click here to read the rest of the column.
Originally published by Hemophilia News Today, 2/14/18.
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Sunday, February 18, 2018

With the Second Diagnosis Came Depression

Second in a series. 

I have been on medication for my clinical depression for over 25 years. There is no other option. Even throughout my second pregnancy, I took medication under my psychiatrist’s supervision. I’ve never been ashamed to admit my need for medication, but one thing that has still been difficult for me after 12 years is understanding the postpartum depression I experienced after the birth of my second child.

To read the rest of this post, click here.
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Sunday, February 11, 2018

With the Second Diagnosis Came Depression

First in a two-part series.
I had never heard of hemophilia until the doctors came into my hospital room the day after my first son, Julian, was born. I soon learned that about two-thirds of those diagnosed with hemophilia are because of a spontaneous mutation. Simply put, a spontaneous mutation happens for no reason. It’s like being the winner of the lottery, except this diagnosis can hardly compare to winning large sums of money. I had no reason to think that Julian was anything other than a spontaneous mutation.  
To read the rest of this post, click here.

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Tuesday, January 23, 2018

Tips for Managing Your Bleeding Disorder in the New Year

When you have a year that is best left in the past, ushering in the new year is a time of celebration. You start with a clean slate and an attitude of hopefulness for what is yet to come.
For many years I based the quality of a year on how many times hemophilia and an inhibitor disrupted our lives; how many hospitalizations, days missed from school, and events canceled were significant in the lives of my family. I even thought about how many times we were infusing and how many products we would need to control a bleed. 
To read the rest of this post, click here.
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