Bleeding Disorder Awareness Month

March is BleedingDisorder Awareness Month.  It is a month when our community puts their best efforts forward to spread awareness about the disorders that our community live with every, single day.  Personally I don’t do anything different during the month of March except change my Facebook profile and cover photo.  I write and share my stories and struggles often and when I do I am making people aware that hemophilia is a chronic illness that brings a lot of struggles.  When your child is doing well, walking and using their limbs without problems, people don’t understand that they can still be in pain.  I think hemophilia is definitely an “invisibleillness.” 

My ten year old son, Caeleb, has significant joint damage in his right knee and right ankle.  If you watch him sit on the floor, you will notice that his leg doesn’t quite straighten all of the way out.  When he walks, he has a subtle limp that becomes more pronounced the faster he walks or runs.  And during the winter months, he aches.  He has pain that a ten year old should not have. He compensates and gets around very well, but I also wonder what kind of pain he has that is part of his normal.

If we go to a mall or a place that has a significant distance to walk, we will often use the handicapped placard to park.  Whenever I have the chance to cut down on some walking to alleviate achiness and soreness for Caeleb I will.  You should see the stares we get!  They are almost as bad as the stares we would get when he was in a wheelchair in the airport.  Once we arrived at the gate, Caeleb would get up from his wheelchair and walk in the waiting area.  Of course people thought, “There’s nothing wrong with him!”  I guess I should carry his MRI films with me to show them different. 

It’s no one’s business.

You just never know what someone is dealing with.  Everyone has a struggle that you know nothing about.  And often times an illness that can’t be “seen” causes individuals to need assistance that is not obvious.  We need to stop judging others and worry about ourselves.  When we do the right thing that’s all we need to worry about.

Easier said than done. 

I don’t want anyone to feel sorry for my sons or our family.  I want them to see that the disorder they struggle with is real. It is serious and I want people to know what hemophilia is so that they will be aware and pass information on to others.  We never know when a little piece of information can be lifesaving for someone else. 

I want people to see how strong and amazing my boys are as they live and thrive with hemophilia and inhibitors.  They could have easily given in and been scared to try new things, but they are both well adjusted and living with passion.  

Small changes hoping for a big difference

Caeleb has had a zero inhibitor titer for 15 months, but his half-life is just over 4 hours.  It needs to be at least 6 hours to consider  him "tolerized."  He's doing great and we have to stay the course with big doses of Factor VIII.  As for his Xolair, the drug that changed our lives by allowing his body to tolerate Factor VIII, it's time to decrease his dose.  I'm actually not too nervous about the change, but a seemingly small change can turn into something big.

It's possible that the Xolair has done everything it needs to do for Caeleb's immune system and the only way to find out is to decrease the dose.  It would be fantastic if he did not have to have these injections any longer.  The drug mixes with 1.4 mls. of sterile water which is hardly anything, but the clear, reconstituted liquid is deceiving because it is so thick.  He gets an injection into each thigh and it used to be a horrible experience because it is so painful.  Now he takes a deep breath and plays his Nintendo DS.  He's such a warrior.

Time will tell.  Our first dose of 150 mgs instead of 300 mgs will be in two weeks.  I am praying that the right decisions are being made and that all goes well.

More to come :)

The Honeymoon is Over

It's been 14 months since my warrior has been in the hospital and it has sure been nice…almost like a honeymoon from hemophilia.  Sadly, the honeymoon is over.  Caeleb had a bad fall on the stairs Sunday evening that warranted a bleed dose of Novo Seven.  All was well as he rested and iced his leg. 

2 am comes and he wakes me up because he is itching.  I wish I remember what his skin looked like because I was pretty bleary eyed.  As he gets ready for school I thought all was okay because he wasn't complaining.  I called the HTC just to let them know about his fall and they wanted to see him.  It was a good thing because his hives were getting worse.  He was admitted and has been getting Benadryl and other meds around the clock.

Because he has an allergy history to factor VIII the doctor wanted to see if we could find out why he was breaking out.  At this point we have no definite answer.  It could be that the Novo Seven was a bad lot number.  Today we are drawing labs for a half-life study to see how all is going.

One thing I know how to do is "live in the hospital."  I could get us packed in a moment's notice to get to the hospital and handle the next bleed.  Coming back for this visit has been different.  We haven't had to deal with pain meds and a bleed and that has been great, but coming back into this environment has been really difficult.  I knew it would be a matter of time before we would get back on the hamster wheel, but I just wasn't ready. 

I have been knocked out of complacency and back into the reality and ugliness of hemophilia.   Caeleb's zero inhibitor titer has meant that our family routine has not had hemophilia as the main attraction.  Our lives have been our main attraction and it has been wonderful!  My heart just hurts being here.  All of the painful memories from our past visits have come flooding back.  It seems like a lifetime has passed.  Almost as if hemophilia was gone.

I loved the honeymoon.  It was a beautiful, much needed time away from hemophilia.  It's given me a greater appreciation for the times when all is well.  

What's a Mom to do?

When you have a young "adult," there are certain things you have to let go.  Prophy is one thing.  My 19 year old, Julian, believes prophy is not necessary since he always infuses when he feels something coming on.  I finally had to let that go and accept it.

He asked me to specifically buy him a leather Medic Alert cuff.  I did.  And where does it live, next to his computer.  This is one that I'm not letting go of.  I keep telling him (without too much judgment) that I worry about the other drivers on the road.  One wreck when he has no factor in his system....I don't even want to imagine.

Last Thursday he came home with both knees bothering him.  He said he was going upstairs to treat.  I went to check on him and he looked at me and said, "I don't have any factor."  I can't believe I didn't go ballistic.  Never mind that since December I was dropping hints to remind him that he needed to order before insurance changed.  And here he was without a drop.

We called his pharmacist and she stayed until 8 pm trying to get his factor through.  He got his bleed doses the next day.  I explained to him all of the steps that were involved to get his factor (with new insurance changes) and he actually teared up and said, "Tina is freaking awesome."

I don't think running out of factor will happen again because he saw that the worst case scenario was having to go to the emergency room.

Sometimes you have to let your kids made their own decisions and suffer the consequences.  Some may think I was pretty harsh because he could have had a major bleed.  It would have meant a trip to the emergency room, but this was one that he had to learn on his own.

What can we do for our teens and young adults?

1. They need to order their own factor.  Some pharmacists use email and texts if you child is busy at school.  Encourage them to take responsibility.

2.  They need to keep an insurance card with them.  Explain copays and deductibles.  You'll have to do it over and over, but our kids need to know about insurance now.  It's not like when we learned about insurance as adults or even when our clotting challenged kids came into the world.

3.  When they are at the doctor's office, they need to fill out their own forms.  Have them be responsible for filling out documentation.

4.  Make sure they know what product they take and their dosage (Amicar included).

5.  Do they know the difference between their homecare and pharmaceutical companies?

6.  Make sure they have the names and numbers for their HTC, homecare and nurses in their phones.

I am sure there are many other things, but these are some of the basics.

Transitioning is tough, but we need to help our kids be ready to take control of the health.

What other ideas do you have for transitioning?

A Wave of Gratitude

A special thanks to my husband for this beautiful post.

This season is very special in our family for a number of reasons. We look forward to time off work, to being together, to play in the snow. It is a very special time when we give thanks for the incredible gifts that the year has offered each of us. We can’t help but feel incredibly blessed.

Today, I was made aware of a special blessing. A year ago, my youngest son looked at me and assured me that he was ready to step out of his wheelchair and go to school on his own two feet. While he walked with a noticeable limp, he has yet to sit in that wheelchair again. It has been an amazing journey to be an eyewitness to his progress.

Flashback to Christmas 2013, two years ago. Caeleb was in the hospital struggling through a very difficult bleed. While it was awful to sit in a hospital room during the holiday, I am very grateful for my wife for making it a holiday to remember; complete with a tree (it was tiny), a projector to watch our holiday favorites, and presents from Santa. The goal was to preserve and celebrate our family traditions, in spite of where we might be.

All of these memories hit me as I took my son to the Carrie Tingley Rehabilitation Hospital to begin physical therapy. We had not done physical therapy in a year. This time would be different. There are no longer issues regarding how much weight he could put on his leg; we would truly be developing muscles that had suffered as a result of being in a wheelchair. This was a different ball game.

When I took Caeleb into the facility, I was overcome with emotions. I remembered that the last time that I brought him into the building, he was in a wheelchair. What a difference a year makes. He and I practically ran into the center as we played one of those daddy and son racing games. We play those well.

As a wall of emotions seemed to pour over me, I saw our physical therapist. To my surprise, I started to break down in tears at her reaction to Caeleb’ s progress. The impossible truly became the possible. My son, once confined to a wheelchair, walked without any assistance. I took this moment as a miracle.

This Christmas, I really didn’t need a present under a tree, because the gift of gratitude was so incredibly powerful that I wanted for nothing. I could only respond over and over again how blessed my family is this year. We are all healthy. We all slept in our beds without hospital monitors beeping in the middle of the night. My son went outside and played in the snow.

This is what I know, the situation in which we currently find ourselves can change at the drop of a hat. What matters is what we share in the moment, knowing that with each passing day life can change on a dime. This year, I am grateful for Caeleb’s health. Last year, I was grateful that we left the wheelchair. The year before that, I was grateful for being together, even in the worst of circumstances; and the year before that I was grateful…