Wednesday, April 30, 2014

A Birds Eye View

I don't think mos people would say that they like to be stuck with needles on a regular basis.  I have heard stories of big, manly, tattooed men on the brink of tears when a needle approaches.......(To read the rest of this post visit

Wednesday, April 16, 2014

The Day Has Arrived

Thursday, April 17, 2014 is the day our family has been waiting for and working towards for months.  It is the day that our mighty warrior "Christian" receives his first dose of Xolair, a relatively new injectable drug that is used to treat moderate to severe asthma.  My son does not have asthma, but has developed an allergy to Factor VIII, the clotting factor his body does not produce.  Allergies to Factor VIII are not as common as allergies to Factor IX and this has been the problem.  There are not many cases that have been studied and successfully treated.

Our hematologists and allergist in New Mexico and Colorado have been working tirelessly to get the drug approved through our insurance and it finally happened. 

What if he has an allergic reaction to the Xolair?

What if after his second dose in May he is still not able to tolerate Factor VII?

What if we never try the Xolair and it actually works?

I have no idea what is going to happen and I am not going to expect the worse...only the best.

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Sunday, April 6, 2014


My mighty warrior, Christian, is doing so well.  He's been to school 30 days in a row and has not had any bleeds that have kept him down.  He has endured a couple of bleeds that we were able to control at home.  This has been a huge victory. 

But there is one thing that he continues to struggle with and it is a product of the Post-Traumatic Stress Disorder that has developed over time.  He has a huge fear of needles and accessing is extremely difficult.  Sometimes he does well and breathes and focuses but other times he is so fixated on the needle that he completely freaks out.  And getting accessed to infuse is critical so we have to hold him down and that is not the easiest thing to do.

The other night was not a good night.   My husband is the one who is sticking because he is best at hitting the "moving target" and my older son and I have a certain way of holding Christian so that he doesn't hurt himself or anyone else.  He is screaming, bucking off the table, tears rolling, his skin breaks out into hives and he is red as a beet.  And what are we doing?  Remaining calm and making the access happen. 

None of us misses a beat and then continue on with our night.  There is no crying from my husband or myself, there is no "I need to calm down"….we have just become numb to the whole process.  I often catch myself thinking about what just took place and it amazes me that it is just part of what is "normal" in our home. 

When you are in the middle of a crisis, or even a daily routine that seems like a crisis, how you handle the situation is how your children will develop their sense of acceptance of their bleeding disorder.  They feel our anxiety and fear and sometimes we are able to keep those feelings at a distance...other times we are not so fortunate.

Christian is going to therapy and whether or not it will make a difference is yet to be seen.  I just hope with every ounce of my being that this struggle begins to get easier for him. 
You do what you have to do even if it's not pretty.

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