Superheroes

The idea of a "superhero" is that they do things that most normal people cannot do.  They have super strength, x-ray vision, speed, determination...

My "Christian" is a superhero. 

As I write this he is lying asleep in his hospital room...a deep sleep because of the pain medications he is taking.  He has a hand that is black and blue and looks as if a truck rolled over it and a knee swollen to at least twice the size of his "good" knee.

He hurts.  He has pain I cannot begin to imagine.

He has endured more pain and trauma than many adults and he is seven years old.  He is not able to run well, needs a wheelchair to get down the hall at school (or risk starting a new bleed) and he has been poked by needles hundreds of times.

Despite all of the "yuck," he always seems to have a smile on his face.

He defines strength.  He defines love.  He is my superhero.

Our children with bleeding disorders are special.  For some reason they have this condition to live with...we will never understand "Why" and we will never be able to take it away.  All we can do as parents and caregivers is love them, advocate for them and ooze compassion and understanding as they struggle.  We need to help them struggle well.

And the tears came

Getting ready for church turns into a day in the emergency room.

Another day of plans put aside….a party cancelled, some needed work put on hold again…

A hand swollen, digits full of blood and a little boy who doesn't understand why.

Passing the time watching movies...praying for results that make sense and medication to work.

A moment of joy at not having to spend the night in the hospital.

Back home to the reality of school projects and heaps of clothes to be washed.

A quiet moment in the kitchen as I try to get back into the pace of a Sunday evening and the tears start to fall.

 

Tears that have been building up over time.

Tears from uncertainty.

Tears for the pain my son endures.

Tears that I cannot take the hemophilia away.

 

 

Monitoring Anxiety

I have struggled with anxiety for as long as I can remember.  It took me years before I realized what it was and that it was real.  My mother also lived with it, but our family did not realize it until after she passed away.  It is a condition that can be handled in many ways; however understanding is half the battle.  I can usually control my anxiety with deep breathing and prayer, but there is one thing in this world that sends my anxiety to paramount levels:  the sound of the monitors in the hospital.

To read the rest of this post visit  http://www.hemophiliafed.org/news-stories/2013/12/monitoring-anxiety/.

On the Verge....

For the past five weeks hemophilia has been the focus of our lives.  Yes, I have two sons with hemophilia and it is in our lives everyday, but when your son has an active bleed that will not get under control and you are in the hospital, it becomes your life.

My "Christian" was discharged yesterday after a lengthy stay, and to say we are joyous and full of thanks is an understatement.  But this evening he looked at me and said "my knee hurts."  My blood pressure went through the roof and my heart is still in my throat.  I jumped into action with a dose of pain meds, ice and elevation and his scheduled infusion is running as I am writing.  I called his doctor and he wanted to increase his factor a bit so that is what we are looking at for now.

When my son is recovering from a bleed it's like watching a pot of water and waiting for it to boil.  I know I can't live like that, but right now that is where I am .  I am making myself crazy!  My anxiety is taking over and I truly feel sick.  I just can't breathe.

I've been living with a bleeding disorder in my home for over 17 years and for the first time ever I feel like I can't go another step.  I know I have to….but it's how I feel. 

I don't want to melt down but I think for the first time I've understood how people do get to the point of breaking down. 

I'm embarrassed to feel this way.  I am a pastor's wife, have a ministry of my own, am a cheerleader in the corporate world for the team I work with and am known as an encourager and one who champions hope.

But the bottom line is...I am human.

When the Lights Go Out

Tonight my sweet "Christian" had some trouble with his infusion of factor and needed a dose of IV Benadryl.  Unfortunately he developed a pretty serious headache and was in quite a bit of pain, so he took some Tylenol and we turned off all of the lights and electronics in the room.

The only sounds were from the sterile water for the oxygen bubbling in the background.  And the only light was shining from the pump and monitor.

I didn't know how to help him with his pain but knew I needed to distract him so I started to talk about my trail riding adventures with my friend "M".  I told Christian about the skull of a dead animal we found, how the dog that accompanies us chases the rabbits and I went into detail about each of the horses at Ms. "M"'s corral.  He was engaged, asked questions and is looking forward to meeting the horses and feeding them carrots.

Nighttime can be scary.  It's when you watch the oxygen and heart rate numbers on the monitor as your child is sleeping and you wonder why the numbers fluctuate...your anxiety can consume you. 

Nighttime is also a time when your mind can wander and you start to think the worst...I mean the absolute worst.  You go places in your thoughts that you have no business going to and you work yourself up into thinking about the worst case scenarios for your child.  Then you lose sleep and feel yucky the next day.

Nighttime can also be a time when you get filled with questions and you want answers and you are not able to meet with the doctor until the next day. 

But what I am grateful for is that the morning will be coming.  Things will look fresh and hopefully we will be blessed with another day filled with continued healing and answered questions.

Most importantly we have the chance to see our child in a "new light" and we continue to do everything we can as caregivers to make sure that the most is made of each day in finding a solution to a bleed and provide some well needed relief...even if it's through a story.

Thank you for asking

My "Christian" has been in the hospital for 17 days as of today.  It's been a long, extremely difficult haul this time.  Family and friends are constantly calling, texting, and "Facebooking" to check on him.  But today someone actually asked, "How is 'Lance' doing?"  My 17 year old Lance also has Severe Hemophilia and has been extremely blessed to not have complications.  But he struggles with the family through Christian's bleeds and hospitalizations.

My husband and I try to keep life as normal as possible for Lance by keeping his school and rehearsal schedule as unaffected as possible.  And for the most part it is uninterrupted. 

But what most 17 year old young men do not have to do is help hold their little brother down as his port is being accessed. 

Most 17 year old young men are not carrying their brother up and down the stairs because his little brother can't walk because of a bleed. 

And most 17 year olds are not nearly as compassionate as my Lance because when his little brother hurts, he hurts too.

Our children with chronic illnesses grow up at a different rate than most.  Maybe it's not obvious because they truly are goofy kids, but when it comes down to what matters most, they are heads and shoulders above most.

Thank you, for asking about my Lance.  He matters too.  Don't leave out the brothers and sisters, they are also on the journey.

Mama Bear...Part 2

The day was winding down, day 10 in the hospital, and who walked in the room?  The resident and her attending.  I was quite stunned to be honest.  The day before I spoke with the Patient Advocate for the hospital and explained what happened and wanted to make sure that my voice was heard and most importantly that another patient was not treated as poorly as we were.

The resident walked in and I could see that it was probably the hardest thing she had done to date.  I could see she was on the verge of tears.  She was very apologetic, never intended to come across the way she did and was almost beside herself that it had happened.  Of course, I accepted her apology, made sure I told her how she made me feel "dismissed" and that the "pain program" at the hospital did not meet our needs.  It was obvious that there is a component missing for patients like my son and the attending and I had some very good discussion.

I was gracious, but firm and ended with hugging each of them.  I can sometimes be a little too passionate for my own good.

The truth is (and I told her this) that I had absolutely no idea what her day had been like when she came in our room that day.  I knew she had many other patients and fires to put out but I made sure she understood that my main concern was my son.  That I would do anything in the world for him, that I would leave no stone unturned to find a way to ease his pain and help him improve.  And that despite her day, he was my ultimate concern.

Things on day 11 are improving.  And I am praying day 12 will bring better things.

Mama Bear

I really don't like to "stir up trouble."  It's not my nature, but when my children are involved I become a Mama Bear.

 

My "Christian" is having a very difficult hospital stay right now.  He has a terrible knee bleed that is causing him to not be able to extend his leg at all….and it's been in the same position for a week.  His pain has been crazy and we finally were able to get it pretty well under control.  His pain breaks through from time to time but overall it is much better than this time last week.

I asked the doctors to consult the pain management team here at the hospital to make sure there was not anything else we needed to be doing in regards to his pain.  I mean, why wouldn't the "pain management team" not be a good resource?  Right?

The pain management team consisted of an anesthesiologist who came down for a few minutes and said we needed to take my son off all of the meds he was getting continuously through his pump and leave him with the on demand dosing he would receive from pushing the button on his pump.

Are you kidding me?  That's your recommendation?  I was so stunned that I didn't know what to say.  Then when I asked how long she would be in the hospital to see if we could call her later so that my husband (who was on his way up) and I could talk to her together she said, "my consultation is now over."

Are you kidding me?  So basically she said she was done and wasn't coming back.

I asked our hematologist to come in and he said they would not be taking her recommendation and that it was not even close. 

 I cannot let this go.  This pain management doctor obviously has not a clue about hemophilia and the pain that a person can endure.  Her demeanor was not appropriate and she made me feel as if I was an inconvenience. 

I am reaching out to the hospital patient advocate in the morning as well as the head of the hematology/oncology department.  I have to do what I can to make sure I have tried to educate so that another person is not treated this way.

Living with a Chronic Condition

When you live with a chronic condition you have to be hopeful and positive.  I find that if you don't try to find the positive despite your situation, things will always look bleak.  And when you have a child with a chronic condition you not only have to keep your chin up for yourself but for your child so that they will have the best attitude possible about their condition.

My "Christian" is not your typical child with hemophilia and an inhibitor.  To top it off he is allergic to factor VIII, the clotting factor he needs in his body.  His inhibitor levels are finally low enough to start Immune Tolerance Therapy (ITT), but because of the allergy situation, it is impossible to start ITT.  He has been living with this inhibitor for over 6 years and when he has a bleed it takes much longer to heal than a person with "just" hemophilia and no inhibitor.

We are in the hospital again for a bleed and not having a product that truly works for him is exhausting.  Here we go again with tons of pain meds to keep him comfortable.  Many days missed from school because we cannot control the pain and the bleed at home.  Cancelled appointments, missed days of work and an upheaval of routine for the entire family.

But this is one of those times I just want to crawl under the covers and cry...

....for the crazy, awful pain my son endures

....for the lack of a proven protocol (product) that will work for him.

....for the fact that he feels different than the other kids.

....for not having my mom to call.

Guest Posting....Bullies

I am blogging over at the Hemophilia Federation of America today.

Stop by :)

http://www.hemophiliafed.org/news-stories/moms-blog

Catching Up

My "Christian" has missed quite a bit of school already this year.  We rejoiced because he recently completed 8 days in a row!  Then his port site was yucky and we had to go to the HTC and another day was missed.  Ugh.

What I am coming to understand is that 2nd grade is not what it used to be.  The requirements are just absolutely ridiculous!  Gone are the days of "review" at the beginning of the school year.  We have a tutor working with Christian twice a week to help him make up the time he has missed.

Unfortunately when you have a chronic illness and you miss many days of school (but not enough to qualify as "homebound") getting caught up is difficult.

My son struggles (at times suffers) from his bleeding disorder.  All he wants is to "be like the other kids" and it breaks my heart that the regular things kids are doing is sometimes almost too much for him.

I never thought we would be struggling to keep him caught up with his education.

Looking Back

When I look back at this picture knowing what I know now, it breaks my heart.  I couldn’t tell my "Christian" then what  I know now about how he would struggle and suffer with his hemophilia...that his journey would be filled with hospitals and pain.

Some people would even go so far as to say that I was irresponsible by bringing another child into the world with hemophilia...that I had my hands full with one child and another would be a mistake.

What I do know for sure is that my Christian is here on the planet for a reason.  He came to me ten years after his brother...ten years as I was an "older" mom.  His timing was perfect.  Actually it was God's timing.  Christian's struggles and pain are not without purpose.  He may be the next researcher to find a cure for cancer, or a Nobel Prize winner.  He could be a gifted teacher touching the lives of thousands of students or a musician writing music that touches peoples lives.  He could even be the example another young man with hemophilia needs to move on with their lives as they struggle in pain and wonder why they have been afflicted with this horrible disorder.

I have never doubted why my son is here.  What I struggle with is seeing his pain and not being able to take it away.  It destroys a part of me every time. 

 

But he is here to teach me how to love. 

Minus 5

Typical.  School has been in session for 9 days and my "Christian" has already missed 5 of those days.  Such is life for a child with an inhibitor.  My husband has been with him all week at appointments in Denver with an allergist at National Jewish as well as our hematologist in Denver.

Christian's inhibitor is below 10 and we have been trying to start Immune Tolerance, but he has developed an allergy to Factor 8 (the clotting factor he is missing).  Fortunately we have another product (Factor 7a) that helps him when does have a bleed, but it does not work as well as a Factor 8 product would work in resolving a bleed.

We were hoping the allergist could shed some light on this allergy and he has been working with our hematologist.  Christian was in the hospital yesterday undergoing a process where he would get a small dose of factor 8 then 10 minutes later a larger dose until we could find out what level he could tolerate (Rapid Dosing).

It did not get very far.  At 400 units he started itching.  For him to be up to 100% he would need 3200 units in his body.  This morning he received a 246 unit dose of Factor 8 and this will be what he takes daily to boost his system to recognize the Factor 8.  Slowly but surely we are going to keep hope alive that we will get Factor 8 into his system.

It's going to be a really long process, and I am trying to be hopeful.  It's just hard to be hopeful all of the time.  Sometimes you just need to be disappointed so that you can move on.

No First Day of School Facebook Photo Today

We had such a nice breather...about 3 weeks without any bleeds.  It was great, while it lasted.  The thought actually went through my mind, "The first week of school is going to be great!"  School starts today and "Christian" is in the hospital :( 

This past Thursday evening Christian's knee started to bleed.  We treated aggressively and things were looking up until Saturday evening and his knee blew up.  Ugh.  The dosing of morphine I was able to give him was finally at the point of not working so off to the hospital we went.

He is doing much better and he may get to go home in a day or so, but I am not sure if he will make it to school this week.  And to top it off, Christian will miss all of the second week of school because he will be in appointments at National Jewish in Denver as they try to investigate the reason behind his allergy to Factor VIII.

I have worked on getting the appointments at National Jewish since May...we can't miss this opportunity.  If they can find out what the problem is, then it will be time well spent.  I just want my son to be able to take Factor VIII. 

I absolutely hate seeing him in pain.  Seven year old boys should be running and playing and it breaks my heart that he can't.  And when he is well enough to run and play, it seems to not last very long until the next bleed comes.

We have to keep hope alive and continue to pray that answers are found. 

Guest Posting...Chocolate and Vanilla

I am guest posting over at the Hemophilia Federation of America today!

Stop by and visit http://www.hemophiliafed.org/news-stories/2013/08/chocolate-and-vanilla-two-brothersso-different/#.UgKUG8u9KSM to read the latest.

Socks and Shoes

 

On June 30th, my "Christian" was running around playing….it was the last day he wore socks and shoes ...until today.  Today was the first day since the 30th that my sweet, 7 year old has put both socks and shoes on and did not need the wheelchair.

He's not 100%, but he is so much better.

When I suggested to Christian that we make a SONIC run, it almost took my breath away seeing him with his shoes on.  It completely caught me by surprise. 

When your child does not have a medical condition there are things you expect:

• That they run and play without pain.

• That they can walk in and out of stores when you run errands.

• That they never grace the halls of a hospital (and know so many people on a first name basis).

• And that your worries center around spelling homework, getting to piano lessons once a week and trying to decide which sports team to participate in for the season.

We all worry about our children.  Not that it does anyone any good.  Worry does not change the outcome of the situation, it does not make the days move along faster and it definitely does not contribute to our health. 

 

But today I am extremely thankful for the little things...the socks and the shoes. 

 

A Funky Season

I admit, I enjoy Facebook.  I'm more of a "lurker" than a "poster" but I do like keeping up with folks and seeing pictures of my friends children and grandchildren.  There was a picture that took my breath away yesterday.  One of our friends, who also has a 7 year old with hemophilia and inhibitors, posted his basketball picture.  He was so handsome and looked so happy.  He was down on one knee with the ball in the other hand with a big smile for the camera and I immediately thought, "My Christian can't do that."  Christian has an awful target right knee and honestly, it has not been good since early January.  He has one struggle after the other and is trying to heal from a new bleed in that knee that started on July 1st.  There are so many things that my son can do, it's just that sometimes I focus too much on what he can't do. 

I've had people tell me that I am positive and encouraging through our hemophilia/inhibitor journey, but sometimes I just don't feel like I am.

I feel selfish because I feel "trapped" at home when a bleed is happening….but I am blessed beyond measure because I can work from home.

• I get tired of having to haul the wheelchair in and out of the car and walk Christian to class on those days...but I am fortunate to have a wheelchair that is easy to use and the flexibility for my husband and I to be able to take him to school everyday.

• I hate that Christian must wear a brace to help alleviate his ankle issues (and look different)...but I am so thankful that my insurance allows for us to have a special orthotic created for him.

• I especially hate the fact that we must travel out of state for direction on Christian's treatment...and again, I am fortunate to have the resources to be able to get on a plane and get where he needs to be.

• I am sad that Christian can't start Immune Tolerance due to his allergy to Factor VIII...but at least it is now down to 10 from 2,200.

I am just in a funky season of seeing the really yucky stuff.  I pride myself in always working to find the good in every situation, but when your child suffers and you just want him to keep up with his friends sometimes the white flag is raised and you have to surrender….to the fact that the journey is just more difficult than most. 

But there is always hope.  I have to keep telling myself that there is always hope.

In An Instant

Wham!  Our lives can change in an instant.

• When the phone rings, the news on the other end could be a terminal diagnosis or a family member could have lost their life.

• You drive to the local grocery store to get a gallon of milk and be involved in an accident.

• You get a promotion at work and you are truly working at your full potential.

• You stop and help someone in need and your day never gets back on schedule.

• A little boy with hemophilia spontaneously starts to bleed and is bedridden and on pain medication for days on end...and mom and dad have to rearrange their worlds until he heals.

It can happen so fast with no explanation.

I often wonder why people have to suffer; especially children.  The only way I can make sense of it is to believe that when a child suffers they have an amazing purpose in this world.  It may be that they grow up to do amazing things; or if their life is short they are here to help pull those around them together and heal them in a way they never dreamed.

Maybe it sounds too simple.  But what I do know is that through my son's suffering, I have become a changed woman.  I am not the same person I was before he was born in January 2006. 

I just thought my son was just an answer to my prayer for having another child (after years of infertility).  I didn't know what God was doing at the time. 

I had no idea that his hemophilia would change me into a stronger more resilient woman.

• I know what it is like to hear my son scream in pain for hours on end with IV pain meds not working.

• I know what it is like to see my son not be able to "keep up" with his friends on the playground because his ankle and knee are in constant pain.

• I know what it is like to see people stare at my son because he is in a wheelchair and he "looks okay"...they have no idea that two of his joints are shot.

• I know all too well the horror in watching my son be overmedicated in the hospital and a team of clinicians surround him to wake him up.

• And I know the fear that races through my body when my son is heavily medicated and I stay up all night counting his breaths.

My heart has stopped more times than I can count with my little one, and the crazy part of it all is that I never knew I had it in me to love as intensely as I do.  It's almost too much to comprehend sometimes.  

I can't take his pain away because I would in an  instant.

What I can do is advocate for my children, always ask questions, demand "out of the box" thinking on treatments, and never give up on finding the treatment that works best.

Hemophilia is awful...but it is part of our lives.  We do what we have to do to the best of our ability. 

I'll never give up.

Sharing Our Stories

It's funny how life works.  You plan, try to do the "right" things the "right" way, and imagine your future...then life actually happens.

I never dreamed I would live in the desert of New Mexico as the wife of a pastor with two sons with severe hemophilia.

Not exactly my plan, but I am sure glad I have the life that I have :)  I love to see how God shows up and gives us the deepest desires of heart in ways we would never imagine.

One thing I know for sure is that when I have heard the stories of other mom's raising children with hemophilia, it has done nothing but inspire and encourage me over the years.  Those stories have always given me hope when I had nothing else to hold on to.

It is my prayer that my stories may do the same for someone else.

I have been invited to join the Hemophilia Federation of America's blogging team for "Infusing Love:  A Mom's View." 

Drop on by and read the stories of mom's who live with bleeding disorders. 

You never know when you will "hear" something that resonates with your own story.

I Should Have Known

"Christian's" knee has been swollen since January.  Bleed after bleed early this year and it just never seems to get back to a "normal" size.  He has needed to depend on his wheelchair more than I have liked, but when his classroom is at one end of the school and the cafeteria at the other, his knee can't take the long distances.

He's just seven years old.

He is in summer school four days a week and has been in the wheelchair and today he wanted to not use it.  His knee looked better than it has in several weeks, so we let him walk.  I had a little twinge of doubt deep down in my gut, and I didn't listen.

And then the 891 exchange came up on my caller id...it was the school...Christian fell right on his knee.

Here we go again, infusing every 4 hours, Cryo Cuff, RICE…..we know the drill but it sure would be nice for him (and all of us) to get a break.

We just do what we know how to do.

Terror

"Christian" has been fighting his fear of needles.  But when you are seven years old, nothing seems to make it "okay" that needles must be part of your life.  We typically de-access his port on Saturday and access on Sunday evenings.  Last Sunday night he did a fantastic job!  But tonight was another story.

My husband and I take turns and tonight was my turn.  Christian just did not cooperate.  My husband had to take over because I just could not get the needle in place.  Christian's blood pressure was through the roof, tears rolling down the side of his face, and as I was holding his arms down to his sides I looked into his eyes and I saw sheer terror.

Terror.

I cant' believe I am using that word, but there is not another word to describe what I saw in his eyes.  I've seen it before and it breaks my heart.  I can't stop and get emotional about it...I just have to focus on the task at hand, which is to infuse.  To get that factor into his body.  To do what is best for him.

And the worst part of tonight, as my husband was pushing the factor into Christian's body, was hearing his little voice between sobs with his little chest heaving saying, " I hate….hemophilia."

Mommy does too.

A Lesson Learned

Living with a bleeding disorder in this day and age, for the most part, can be managed well...if you plan well.  Bleeds never happen at a "good" time and last Friday was a perfect example.

"Christian" has been doing so well with no big bleeds and his knee (target joint) looks better than it has since January.  We traveled to Clovis, New Mexico to attend the New Mexico Annual Conference of the United Methodist Church's ordination service.  My husband was being ordained.  It is a moment we have worked together for as a family for several years and the time was here! 

We arrived Thursday evening and as he was going to bed Christian said, "My knee feels funny."  I infused an extra dose and tried to ignore what I knew deep down was a sign.  By noon on Friday, his knee was huge and I did not take enough factor to treat an acute bleed.   And I did not bring his pain medicine! 

At 5 pm I took him to the emergency room to get help with pain, we left and went to the service.  Before the service was over I had to leave and go back to the emergency room because his pain was crazy out of control.  And the hospital in Clovis only had 4 mgs of Novo Seven.

My husband was tied up and I was on my own and let me tell you something, if the mental beating up I was doing to myself could be seen, I would be black and blue.

"What was I thinking?  I have a child with a severe inhibitor and I am four hours from home (with nothing in between)!"  I even called my homecare to see if we could get factor on a plane and it did not work out.  It would have made more sense to go home.

Fortunately the ER was able to get his pain under control, gave me liquid morphine to take with me and I rationed out the last 4 mgs of Novo Seven that I had until the morning. 

Friday night was one of the most stressful and most glorious nights I've ever experienced.  My husband fulfilled his dream of becoming an ordained minister in the United Methodist Church and I was caught unprepared with my son and I could not take his pain away.

I know, without a shadow of a doubt, that I will never leave home unprepared again.  I will plan for the worst and hope for the best. 

So many people around me tried the best they could to help us out and knowing they were there made all the difference in the world.

I felt completely defeated, broken, irresponsible….the list goes on.  But what I do know is that I would do anything in the world for my children and if going through this experience has taught me a lesson and all is well today, then I am a blessed woman.

Ronnie Was Here

Fifty one years ago today a little soul left this world.  His life was short and he struggled, but he lost his fight.  He had hemophilia and back in 1962 in a rural, Texas town, hemophilia was not a disorder that brought a great deal of attention, so I don't know if his life was short because of lack of medical treatment, or even lack of the parents and medical professionals even knowing he was afflicted.

 

To read the rest of this post, visit http://cazandramacdonald.com/2013/05/ronnie-was-here/

 

 

Caller ID

Remember when caller id was futuristic?  I remember thinking how cool it would be if you could see who was calling before you picked up the receiver and if I would ever be in a world where you could make a phone call and see the person while you spoke (Skype). 

Being able to see who is calling is the norm these days.  If I don't recognize the number 9 out of 10 times I will choose not to answer the phone.  And sometimes if I do know who is calling I still won't answer the phone :)  But some numbers make my heart race. 

When I see a certain "891" exchange, I know it is the elementary school.  I have a great relationship not just with "Christian's" teacher, but with the ladies in the front office and the clinic.  They all know that if they are in doubt about whether or not to give me a call regarding Christian that I would prefer them to call.  I would rather drop in to the clinic, check him out, infuse if necessary and send him back to class.

Fortunately I have a job that allows me the flexibility to run to the school when I need to.  My husband too.  Between the both of us we are able to check on Christian regularly and this has empowered the staff at his school to feel good about his care.

This week has been a crazy week in going back and forth to the school to check on Christian and give extra infusions.  We do what we have to so that he can stay in school.  We have a half day to go before he becomes a "big second grader" :)

You never know when that phone call is going to be a "little" something that you can treat with factor and a hug and a kiss, or if it is a "big" something that will change your entire day (or week) by needing to go to the treatment center or the hospital.

I hope that as school ends and summer approaches that we all get a little break from the running back and forth and get a chance to breathe.  The new school year will be here before you know it! 

Kites and Play Days

"Christian" finally made it to a field trip!  His class went to a local park to fly kites and have a picnic and he didn't have any issues.  I am so glad he made this trip since he missed the previous three.  The great thing about seven year olds is that they don't dwell too much on the past, they are into the "here and now."

But now I have to weigh whether or not Christian should attend "play day" tomorrow.  Bouncy house (yikes) and games.  His ankle is swollen and even if I send him in the wheelchair, I think it would not be in his best interest.

He misses another day and another event, but the beauty is that he is looking forward to Daddy being home from his trip and going to a birthday party this weekend.

I love my son's spirit.  He is resilient, tough as nails, and the sweetest, funniest kid you would ever meet.

It's been a heck of a journey with him, and I can't hardly wait to see what the future holds for him.  It's going to be pretty wonderful :)

Great News!

I received an email from Webicina, a free service that curates medical social media resources and selects the most relevant ones focusing on various disease states, and my blog is one of their featured blogs on hemophilia!

I would love your help to get to the top of the curated lists that are featured on Webicina by clicking the green thumb up button on my blog name.

This is truly an unexpected surprise!

The Playground

Last week I went to "Christian's" Spring BBQ at the elementary (where 1st graders eat lunch at 10:45 am) :)  I sat with him and his friends and enjoyed some great conversation followed by the playground.

The doors from the cafeteria opened and the kids raced off to the jungle gym and the ball courts.  But something was not able to happen...Christian could not run with them.  Even if he had not been in the wheelchair, he would not be able to keep up.  It took my breath away for a moment.  My son was not able to run and climb and enjoy his classmates.  I started to feel really sad and then Christian says "Come on Mom, let's go around the track!"  He excitedly takes me around the perimeter of the playground (his very familiar route) and keeping up with him was not as easy as I expected.

Something beautiful happened during that recess time.  Occasionally a friend of his would find him on the track and walk and talk with him.  Two really cute little girls came up and said "let's race", as they walked quickly beside him.  And then a little boy came up to him and started "dodging" him making Christian turn his wheelchair around in circles to find him...it was like hide and go seek :)

Those children included my son and expressed a love only a child can express to one another. 

The wheelchair was not in the way, they saw past it.  He was just their friend.

My eyes were opened that morning.  I have a deeper appreciation for what my little one has to accept. 

I will be with him every step of the way.

Embracing

Our family had a great vacation to Colorado.  My "Christian" did not have any bleeds, just a horrible cough, "Lance" had no issues and the most exciting part of the trip was that blizzard like weather hit in the middle of the week and we did not have heavy coats :) 

The main reason for the trip was to see our second opinion HTC regarding Christian's inhibitor.  Not great news as of now.  His level is down to 11.9 but the doctor is truly stumped.  Christian is allergic to the Factor 8.  The avenue we are investigating is "desensitizing" him to the factor.  This would mean an extended stay in the hospital (in Denver).  But there is too much we do not know (and the doctor agrees as he is reaching out to colleagues across the country).  It's a little too much to even think about right now. 

We are reaching out via social media to see if others have endured this type of complication and will be attending an Inhibitor Summit this July armed with questions.  We are planning on taking it slow and getting our ducks in a row.

And yes, today was our first day back to work and school and the elementary calls...Christian has twisted his "good" ankle.  In the wheelchair he goes and is home with a bleed.  And yet again, another field trip is tomorrow and it looks like we may not make it.

There are many things in this world that are worse than missing his third field trip of the year...Boston, a wreck on I-40 yesterday killing a 7 year old child, losing a job, losing a spouse....but it still hurts that there are times when my son has to step back. 

It all depends on how we, as parents react.

I just pray that he eventually embraces his bleeding disorder. 

I know that sounds strange, but we all need to embrace ourselves just as we are, don't you think?

Ready for a Break

We have been enjoying a little respite from the craziness "Christian's" inhibitor brings to our lives. His knee is doing much better, but is still swollen. I looked in his infusion log and the first knee bleed of the year started on January 5th....and it is still not healed.

 

His classroom is very far from the cafeteria, library and the front of the school, so he has been using his wheelchair (in the hallway). I hate depending on the wheelchair, but it sure has helped him. We are anxiously awaiting his new custom chair to arrive! It was a pretty penny, but I think it will be well worth the investment.

 

Our family is looking forward to Spring Break next week. We will be traveling to Denver for a follow up appointment at the HTC and are hoping to get a new plan of action for this inhibitor.

 

You just have to move a day at a time when you have the craziness of a chronic condition in the mix. It's so easy to get overwhelmed and find yourself worrying about what has not even happened. Be thankful for the calmness when it is present and enjoy the moments.

 

They just go by too fast.

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So Incredibly Disappointing

Even since "Christian" was diagnosed with an inhibitor back in December of 2006, we have waited for the Bethesda units to drop low enough to start Immune Tolerance Therapy to eradicate the inhibitor. On March 8, 2013, we were going to finally start!

 

Our entire family was thrilled beyond belief that this day had come. Christian and I changed our travel (as we are in Denver for his HTC appointment) and were admitted to the Children's Hospital in Denver. Friday was the day. We knew that the possibility of a reaction was a concern so the doctor had Christian admitted mainly for observation.

 

The infusion of Advate caused a reaction. Christian began itching uncontrollably and broke out into hives on his upper body. So Advate was out of the question. Saturday would bring an infusion of Alphanate. This was going to work, I just knew it! I'd heard nothing but positive, did some homework and was ready for this to be the answer.

 

His reaction to the Alphanate was worse than the Advate. He broke out head to toe. It was a really severe reaction. He is feeling much better and we are being sent home Sunday (unfortunately we could only get a really late flight due to the weather in Denver) and will regroup with the HTC next week.

 

Nothing has been "easy" with Christian and his hemophilia. I guess I shouldn't be surprised that the road to getting rid of his inhibitor is going to be any different.

 

It's just more emotional and upsetting than I had ever imagined it would be. It's something I can't fix and want nothing more in the world than for my son to simply need Factor 8 to treat a bleed. The day will come...it's just going to be a while longer.

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Another adventure

"Christian" returns to school tomorrow after yet another knee bleed.  He fell at school right after returning from a previous knee bleed and it started again.  He just never quite healed so we were cautious in sending him to school too early.  While we were in the hospital last week, I called the HTC in Denver and told them that we could just not wait until April for his next appointment.  Denver is our "second opinion treat our inhibitor" treatment center.

How many more bleeds would he have to endure if we waited?  This has been a very difficult time as it seems he is bleeding once a week to a week and a half.  We are treating each bleed aggressively with NovoSeven, but we need a plan.  An aggressive plan.  His inhibitor is down to 17 (hopefully its not crept up any higher) so maybe at this point Immune Tolerance is an option...I will consider just about anything because doing nothing is not working.

On Thursday we have an MRI followed by his appointment at the HTC and finally an appointment to be fit for a new brace….he has just grown out of his other one.

Flights are made, hotel and car are reserved and we will be off on another adventure.  An adventure that will hopefully help to make my son's life better. 

Everyone is Different

Several people in the bleeding disorder community don't understand why some people are hospitalized so often for bleeds.  "Why can't you treat the bleed at home?  Why do you go to the hospital so often?"  Honestly, those kind of comments make me doubt my instincts.  They upset me a bit.

Often times my "Christian", who is a frequent guest on the 6th floor at UNM Children's Hospital, has to be admitted for bleeds.  It's not just the bleed that is being treated, but the pain.  We cannot control the pain at home and the only way to give him relief is by IV Morphine that can be administered at the hospital. 

There is nothing worse than hearing your child scream in pain and not being able to help him.

If you were to look at him lying in bed playing the iPad, you would never know he was hurt.  But when you pull the covers down and look at his knee and you realize he has not moved positions on the bed for hours on end, you begin to understand.

People don't understand what our children go through.  They assume that if you can't "see" the condition, it really can't be all that bad.  A cancer patient who has lost their hair is a visual testimony to what they are battling.  The same for a person with a missing limb or someone with an oxygen tank by their side.

Truth is, I can't imagine what my son feels when he has a bleed.  It's a pain that takes him to a different place. Sometimes I think he is out of his mind for a brief few moments, and it is heartbreaking.

If it means coming to the hospital to treat bleeds and pain, then that's what we will do.

Everyone with a bleeding disorder is unique in how their bleeding disorder "shows up".  As a community, we need to remember that we are all different and sometimes what works for one person does not work for the other.  Let's continue to be passionate about the care we give and receive for our loves ones...and be passionate by reaching out and offering a lifeline of support to each other.