Wednesday, March 1, 2017

Numbers...ugh


When you live with an inhibitor you often wonder what life would be like if you "only had hemophilia."  In our case, Caeleb, who is 11, has lived for 10 years with an inhibitor.  Shouldn't it be gone by now?

Our oldest son, Julian, who is twenty, also had an inhibitor when he was one year of age.  It lasted for two and a half years and when we finished Immune Tolerance, he was successfully tolerized and has not had a recurrence.  Accessing a little boy's port daily for two and half years doesn't sound "normal," but it was for our family and it paid off.

Fast forward to his brother, who is ten years younger, who was also diagnosed with an inhibitor when he was eleven months of age.  Nothing was remotely similar to his brother.  His extremely high titer (>2,200 BU) made attempting Immune Tolerance Therapy (ITT) impossible until the past couple of years. 

Caeleb's bloodwork came back today and his Bethesda unit (BU) is .43 with a half life of 3 hours and 47 minutes.  Ugh.  I know tracking his numbers is extremely important, but sometimes I just don't want to know.  I get my hopes up that maybe, just maybe this is the time that his half-life will be better than four hours (the goal is 6+ hours).  But it just hasn't happened yet.

What I do give a great deal of thanks for is that Caeleb is not bleeding regularly, his port is working and accessing daily is part of our routine.  I remember not too long ago that daily accessing at home was not possible.  Getting into his port was a nightmare as he fought every step of the way. 


I am grateful for so many things and today I give thanks for the blessing of my mighty warrior, Caeleb, who has brought an enormous amount of joy into my life.  

I am  not the same person I was without him…I'm better.
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Wednesday, January 18, 2017

Eleven years

My mighty warrior, Caeleb turns 11 years old today.  I lived for 37 years without him…how in the world is that possible?  I have always said that I felt like my life began on June 23, 1996 when my Julian was born.  For at least 5 years my husband and I tried to have another child.  We considered adoption, underwent some infertility treatments, and when we finally accepted the fact that another baby was just not possible, we grieved and moved on…and then I needed a pregnancy test :)

Caeleb was not a surprise.  He was my heart's desire.  It just wasn't in my time, but God's.  I have often thought about God getting a good laugh at me and my husband as we started over with an infant when our oldest was 10.  I was potty training at 40!  But I will say that I have loved every minute of it.  I am usually the oldest mom in my son's class, but I am definitely not worried about what others think the way I did when Julian was little.

It's amazing what can happen in eleven years.  We left Houston, the only place we ever lived, and stepped out in faith by moving to New Mexico.  In eleven years we have lived in five different houses, served at 4 different churches and dealt with medical issues that many people will never deal with in their lifetime.  The struggle of being called to a certain place and having a sick child was almost too much at times, but to have gone through everything we have gone through and be in such a wonderful place in our lives is nothing but for the grace of God.

The sparkle in our home is packaged in a little 5th grade boy.  He runs and plays with a passion that warms a person's heart.  You would never know he lived in a wheelchair for a year.

He has a compassionate heart.  You cannot imagine the physical pain he has endured.

He loves with his entire soul and his laughter and giggles are heartwarming.  You would never imagine that he spent weeks at a time in a hospital bed, pale as a sheet.

My mighty warrior is one of a kind.  I am so incredibly blessed to be his Mom.  He has changed me from the deepest parts of my soul.  I know how to love and fight because of this amazing little boy. 

I can't wait to see where life takes him.



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Friday, January 6, 2017

Smells and Sounds - Guest posting at HFA


The senses of sound and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding doors of the hospital can take you into a place where nothing but painful memories linger.

To read the entire post click here.
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Tuesday, November 1, 2016

On this day...

I love when I look at Facebook and the "On This Day…." reminder comes up.  A familiar photo of a special time with family and friends, a post about the events of a fantastic day…but when October/November comes, those posts are often ones I would rather not remember. 

It was only three years ago when my Caeleb was in the hospital constantly.  Bleed after bleed, pain that would linger for days and days on end…the memories flood back.  Halloween decorations covering a sterile hospital room would mask what would be a very painful time of year for Caeleb.  But last night he took to the streets dressed as Darth Vader walking on his own, no wheelchair in sight.

My husband and I were talking about the Halloween nights we would take Caeleb trick or treating in his wheelchair and help him "hop" to the door.  We also remembered how we never really saw how steep the driveways in our neighborhood were until we had to use that wheelchair :)

It still amazes me how those times of living in crisis can come flooding back in an instant.  Sometimes it’s a smell that brings back those memories.  Other times it's a holiday or birthday when we reminisce and realize, "Oh yeah, we were in the hospital that year."

I have seen Post Traumatic Stress Disorder (PTSD) in my son.  For the longest time, after his long stints in the hospital were done, we would go into the clinic and his behavior would revert back to that of fear.  The scary part is that I have seen it in my husband and in myself as well.

I know that time heals and sometimes complacency helps, but when you live with a rare, chronic disorder, you just never know when something is going to happen and crisis mode begins.  I can either live in fear of the next crisis or live in gratitude that all is well.  I choose gratitude every time.




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Thursday, August 25, 2016

Little Reminders

I love when life is going well, no complications, food in the pantry, work is good, the house is somewhat clean and my sons are in good health.  With the start of a new school year, I haven't thought much about Caeleb's starting 5th grade because he has been bleed free for over a year.

Over a year!

Right before school started, our hematologist wanted to take blood from Caeleb for a half-life study.  Knowing that with his inhibitor registering zero, the fact that it is still floating around is fact.  The last time we checked his half-life it was about 4 hours and to be tolerized he needs to be around 6 hours. 

When the nurse called and said that his inhibitor was now registering .65, my heart stopped for a second.  I know numbers aren't everything, but I do hate that it is actually registering again.  Nonetheless, he is doing great.

Caeleb has always wanted to ride the bus to school, but with his mobility issues it has never been possible.  This year we decided to give it a try.  The bus stop is only 2 houses down the street, so off he went on his first day.  I stood in the front yard watching as my husband, Joe, went along with Caeleb to make sure all was well.  When Joe came back he said, "Those steps are a little steep and it took him a minute." 

It's one of those subtle reminders that yes, the damage to his knee and ankle are real.  He adjusts to whatever is thrown his way physically and does it so well that our family doesn't even notice. 


Little reminders of things in the past are good.  They keep us "honest" and help us to not forget about what is important.  I believe it is important to remember where we have been no matter how painful.  It helps to appreciate how good things are now and how much better they will continue to be.

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