My Son Learns Why It's Critical To Rely On Others

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days a week until he moves. It’s been a big commitment, but he is looking forward to the next phase in his life. I am excited for him.

Last week, he called me during his shift and told me he was having a bleed. It was a significant one in his arm. He had not told his employer about his bleeding disorder, and when they saw his arm they were concerned. He had hit it hard in the stockroom, and I could hear the concern in his voice.   To read the rest of the column click here.

The Comfort of a Port

Originally published March 20, 2019.

The unimaginable has happened. My youngest son, Caeleb, had his port removed.

Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had a port in his body since he was 11 months old. With a nasty inhibitor (that is still active) and poor venous access, a port has been part of his life. A part of our family.

In my home, a port has provided a sense of comfort. My adult son, Julian, had a port for five years starting at the age of 1, and it was a lifesaver. Going on trips was not a problem because infusing had become much easier with a port. It gave my husband and me the freedom that we had not experienced with a hemophilia diagnosis. A port helped me feel like I had some control over this crazy, rare blood disorder. It brought a sense of comfort knowing that I could administer factor quickly.

While Julian never had a single infection or any type of complication with his port, Caeleb experienced every kind of complication possible. That is why he had numerous ports over the years. But despite the problems with port infections, a cracked port, a port that worked its way out of Caeleb’s body, and ports that flipped over, I still had the hope that if I needed to get factor into my son, the port would help me get the job done.

Caeleb has not had a bleed in over four years. During that time, my husband and I were accessing Caeleb’s port daily and infusing. It was great. His quality of life improved, his inhibitor came down, and the factor was helping Caeleb lead a “normal” life.

A year ago, we moved to a new treatment that called for a simple injection rather than an infusion. It has been life-changing. When the hematologist told us it was time to consider removing the port, it almost sounded like an idea to dream about rather than something that would actually happen.

The surgery lasted all of 30 minutes. The port slipped out without a problem, and Caeleb is now port-free. I kept waiting for post-operative bleeding to begin, but it didn’t. My son was cleared to go home on the day of his surgery. The day of his surgery! No morphine needed, just Tylenol post-op.

It’s funny that I still have anxiety running around in my body. The port (aka Jim Bob) is gone forever. If Caeleb has a bleed, my husband or I will need to rely on a peripheral stick. I know this is how many people with hemophilia handle their disorder, but when you have lived with a port for 12 years, there is a strange sense of loss that comes into the picture.

My level of control (like I really had any to begin with) has changed. I never believed our community would be in this place of groundbreaking treatments during my lifetime, yet here we are. My mighty warrior Caeleb is reaping the benefits, and for that, I give great thanks.

One-word Resolutions for the New Year

I am already looking forward to 2019. The first half of 2018 was not filled with joy, but fortunately, the last six months have been pretty wonderful. Part of this has been Caeleb’s new treatment with Hemlibra (emicizumab-kxwh). It has truly changed our lives. His quality of life has improved by over 100 percent. It is a miracle.

How in the world can 2019 be better? I do not believe in New Year’s resolutions. I have tried too many times to better myself, only to fail by Jan. 5. So, I’ve adopted a new way of approaching the New Year. I select a single word as my focus. Some of my previous words have been “intention,” “hope,” “joy,” “enough,” “change,” and “flourish.” I find that having one word as my focus gives me many different ways to be successful.

Consider where you are in the midst of your bleeding disorder. How can things be better in the near future? Are you looking forward to a change in your treatment? What about your quality of life? Maybe you are about to embrace some activities as a catalyst for bigger changes to your health. This is the time of year to start considering how you can move toward having a healthier year.

To read the entire article, click here.

PTSD Will Not Define Us

My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit in and make friends. He comes home most days with a tale of mistreatment or insensitive comments directed at him. It breaks my heart, but the situation is improving. However, last week he told me about one child’s comment that hurt me deep in my soul.

“You walk funny,” the child said to Caeleb as he mimicked his limp. Caeleb replied, “Yeah, I’ve had some problems with my knee.” They went back to playing ball after lunch.

My son, in his retelling, did not seem to be bothered by the comment. Of course, the Mama Bear in me wanted to find the kid and scream, “You have no idea what he has been through! You will hopefully never understand the pain my son has endured that’s caused his limp!”

It sounded like the kid meant no harm; he was merely being observant and asking a question. Regardless, the story sparked a flashback to painful times for me. The question raised out of curiosity could have triggered memories in my son of the long days and nights with a horribly swollen knee.

The question took me back. Some would call it mere memory, but I know it as post-traumatic stress disorder (PTSD).

PTSD heavily affects war veterans, but it also affects others who have had traumatic experiences. When I take my mighty warrior to a treatment center to have blood drawn and a nurse walks in the room with a bucket of gauze, tubes, alcohol swabs, and needles, he tenses up and his entire personality changes. I sometimes have to snap my fingers to get his attention and bring him back to reality. It is frightening to see him regress to the scary moments of the past.

My husband and I feel the change in our bodies when we walk into a hospital and encounter the familiar smells and sounds. We can’t get out fast enough. Trauma changes a person’s life. My two sons are victims of the genetic bleeding disorder inflicted upon them.

My sons are, wonderfully, encountering few bleed episodes. However, it doesn’t take much to flash back to the painful times. It is not healthy to live in the past. Instead, I focus on what is yet to come. While learning from mistakes is a good thing, I refuse to let hemophilia define my sons.

It is my job as Mama Bear to keep my cubs moving forward as they learn how to take care of and advocate for themselves even when it is uncomfortable.

Invisibility, Not the Easy Way

I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?” I immediately answered, “Yes, it would be cool.” But sometimes being “invisible” is not beneficial.

In the bleeding disorder community, there was a time when having hemophilia was an obvious, physical limitation for many. Damaged joints caused people to limp and often rely on walkers, crutches, and wheelchairs. Joints that bled numerous times would never be the same in function or appearance. It was obvious that something inhibited the person from being mobile. There was never doubt that the individual had a physical impairment.

Fast forward to 2018, and many with hemophilia are living lives the older generations could only dream of. Factor products are much safer and more effective, which leads to less bleeding and joint damage. Many with hemophilia play basketball and soccer with ease (and continued precaution). And the “hemo swagger” of the past? Many never experience it. Yes, this is fantastic. However, when our community fights for insurance coverage, choice of factor products, funding for hemophilia treatment centers, and even 504 plans in our schools, the unaffected world does not see an impairment.

The uneducated world sees a little child playing and running with ease. What they do not see is the port in their chest or the needle marks at the sites of regular infusions. They do not see how a child must learn to accept needle pokes as a way of life. And they surely do not understand how a 12-year-old boy can have arthritis.

My 12-year-old has arthritis and the “hemo swagger,” neither of which are always easily seen by those who do not know his hemophilia experience. When he suffered from constant bleeds and could still walk, we would park in an accessible spot at the store. The stares and comments from onlookers were horrific. They had no idea that my son suffered more than they probably would in a lifetime.

We no longer need the handicapped placard, but there are hundreds of thousands of people who do need that placard. On the outside, they are seen as physically able, but before you judge them, stop for a moment and consider that they may be fighting a battle you could never comprehend.

Invisible Disabilities Week is Oct. 14-20. Rather than judging someone as they leave their car in the accessible parking spot, take a moment to give thanks for your health. You may need that spot one day, and you will hope that those walking past will not be filled with judgment, but with kindness.

Chronic Illness and Depression Often Go Hand in Hand

I have suffered from clinical depression most of my life. Five weeks after my eldest son was born over 22 years ago and diagnosed with hemophilia, my mom passed away. It was not a good time. I had planned on taking maternity leave until after Labor Day, but after Mom’s death, I knew I had to go back to teaching as soon as possible. It was those events that launched my depression into a new realm. However, once I saw a psychiatrist and a therapist, things were much better.

After my second son was born 10 years later, I experienced a terrifying condition: postpartum depression. If you ever hear of someone suffering from postpartum depression, please do not ignore it. It is hard to understand if you have not experienced it, but it is real and frightening. Fortunately, I had the help I needed, and after several months the depression lifted. But it was time stolen away from me and my mighty warrior.

Over the years of suffering from depression, I also developed anxiety, which is also another condition that is hard to understand. I get it. My mom suffered from depression and anxiety, but in her day, it was not discussed or even given a diagnosis. I wish I had known then what I know now about anxiety and depression.

Many people in our bleeding disorder community suffer from mental health issues. Depression and chronic illness go hand in hand for many of us. The pain and suffering caused by a bleeding disorder (or any chronic illness) can sometimes be too much to bear. One of the giants in our community, Barry Haarde, lived with depression. He rode his bike around the country raising money for Save One Life. And even his closest friends had no idea how deep his depression went into his soul. He ended his life earlier this year with many left behind wondering why. “What could I have done? How did I not know?”

Sometimes it is hard to know if someone is suffering. Many of us function beautifully, we have a smile on our faces when we’re with others, and the minute we are alone, or in the comfort of our homes, the weight of the depression takes over. It looks different in everyone, and when you are especially close to someone it can be difficult to see.

If you have a problem, find someone close to you and have a conversation. It is amazing how confiding in a good friend can help your spirit. Maybe you are the person who is being present and listening. Open your ears and your heart to truly “hear” a friend in need.

If you need help from a medical professional and aren’t sure where to begin, talk to your Hemophilia Treatment Center. They will help refer you to a mental health professional.

It’s not anything to be ashamed about. Reach out. It could be a life-changing moment.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

Lessons Learned, the Hard Way

Wash your hair. Brush your teeth. Please, for the sake of the world, put on deodorant!

Hundreds of times I have given those commands to my sons. Well, not so much “commands” as directives. I know I taught them basic hygiene at a young age, but why is it they insist on not complying? Is it a boy thing? I would never have dreamed of not wearing deodorant or not brushing my teeth before leaving the house. I think it’s simply because they can, and they know it will drive me nuts. At least my 22-year-old is past the “stinky” stage.

One son (who shall remain nameless) went to a recent dentist appointment and was shocked by the findings. “I didn’t know flossing was such a big thing,” he said. Yes, I wanted to do the “I told you so” dance, but I had to keep my anger in check. It’s one of those lessons that need to be learned the hard way. Yes, there is still hope, and their teeth are not exactly rotting out of their heads, but I get so frustrated. So many times I have said, “Son, you don’t want to have dental problems with your hemophilia. It’s just not worth it.” But my words have fallen on deaf ears.

The crazy part of this is that I immediately blame myself. Maybe I didn’t teach the importance of dental care the way I thought I had? Did I nag too much? What could I have done differently? I’ll go crazy with those questions and need to let them go, but I still feel like a failure as a mother.

Don’t we do that too often? If our children are not performing to a high standard and struggle with math, or are not athletically gifted, or don’t have college offers to pick from before their senior year in high school, then point the finger at me. I have failed.

I was a straight-A student, always turned my work in on time (if not early), and excelled in school. My husband was the same. I always expected my sons to have the same standards. But it doesn’t always happen that way.

I wanted for both of my boys to enjoy school and thrive, and at times they do, but there is an important lesson I have learned: My journey and theirs are completely different. I did not have a severe, chronic illness with which to contend. Not to excuse things, but they have each had significant struggles due to hemophilia, which affected their schooling.

My kids are in good places right now, and I do not take anything for granted. Their hemophilia is managed well with no significant bleeding episodes, they are both in school, and life is good.

I invite each day as a fresh start. As long as I have breath, I will do everything possible to help my sons succeed. There will be more bumps along the way, that is for sure. Right now, I give thanks for this season. My family is in a place that fills our needs. We are happy.

I think a cavity or two can be handled.

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.

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.

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. 

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.

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.

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.

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.

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.

7 Tips for Holiday Travel Success

When you have a bleeding disorder and you are traveling, there are many things to remember. Forgetting factor or Huber needles can leave you in a bind, because these are not items that are easily found at your local drugstore. Making a list and keeping it handy, regardless of how experienced you are with your bleeding disorder, is always a great tool.

To read the rest of this post, click here.

Mama Bears and Warriors: Tears and Joy

Buckets. Buckets and buckets of tears. That’s the only way I can describe the tears I have shed over the years because of living with hemophilia in my home. Both of my sons have had their own struggles with hemophilia and inhibitors, and the tears I have shed have been a response to the various aspects of what hemophilia and an inhibitor can do to a person’s life. I would never wish an inhibitor diagnosis on my worst enemy.  To read the rest of this column, click here.

Something New: Welcoming a New Product to the Family

The hemophilia landscape is much different today from 21 years ago, when my first son was born. There were not many choices in products and they all seemed to do the same thing — help with clotting when the body needed it. Over these years, we even went through a factor shortage. I remember hearing stories about people not having enough factor when it was desperately needed. Fortunately, we had what we needed and were not affected. But when I think back to that time, I was naïve about the enormity of the situation.

Read the rest of the column at Hemophilia News Today.

How Our Family Regained Control

There have been seasons when hemophilia became the center of my family’s universe. A bleed would start and before it healed completely, it re-bled, or a new one began. Visits to the clinic for appointments, timed blood draws, unpacking factor and supplies, phone calls about co-pay assistance, factor orders, authorizations … it seemed to never end.

Yes, hemophilia needs to be the focus when bleeds ravage your child’s body. Click here to read the rest of this story.

A New Opportunity

I started blogging in 2006 out of loneliness. My family moved from Houston to a small town in New Mexico and one night I was completely overwhelmed by the fact that we actually moved! It was a good thing, but a little shocking because it happened in such a short amount of time.

In 2011, my head was reeling from the craziness of hemophilia with my mighty, warrior Caeleb. So much was going on that the only way I could deal with my emotions was to blog about it. I started this blog simply because I needed to express my emotions and keep a record of everything that was happening with my son.

Writing has given me an outlet that I never realized I needed. It has saved me from myself in the worst of times. An online publication, Hemophilia News Today, sought me out to write a weekly column! My column is published on Wednesday's and like my blog, I hope that my thoughts and observations from raising my sons with hemophilia and inhibitors can bring some hope and encouragement to someone else.

You aren't alone. The bleeding disorder community is not really a community...it's a family.

If you need something, reach out in a Facebook group! These groups will always have someone with some good advice and encouragement.

Keep reading, asking and educating yourself.

The worst of the worst will not stay the worst of the worst...it will get better.

To read Cazandra's latest column, click here.