Category Archives: Xolair journey

Another round of shots

Today is the first day of Alex’s immunology. Supposedly, the Xolair makes it possible now for Alex to get these allergy shots without having an asthma attack. As a mother I am thinking, is a week of Xolair enough? Are we going to go in today to find our that the Xolair is not working? How do we know for sure that these shots will not cause the asthma attack that we once thought they would?

Well, I guess the answer is simply this, we have faith that the doctor knows best and that God is watching over our little man. The nerves have kicked into high gear, but today will be another learning experience and we will get through this as well.

I will post later to let you all know how he does! Thanks for your continued support, prayers and love!

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First Dose of Hope

Well, today is the day. As I type we are in the doctor office waiting out our monitoring time. So far so good. Fingers still crossed but it looks like Alex is way stronger than any stinkin’ side effects!

He is amazing! This child continually impresses me and that’s pretty hard to do figuring I already think that he hangs the moon. He took his shot. Not even one tear. He is such a trooper! Not only did he not cry, he didn’t even flinch. The smile has not even left his face all day.

Thank God for the blessing of His strength that he has given Alex. This day could have gone a million shades of grey but instead it really has been a day of hope and joy. (knock on wood that it continues this way)

Thank you to all of our friends and family for your support and continued good thoughts, good karma, crystal rubbing, praying or whatever it is that you are doing on Alex’s behalf! I love you all for your gift of love! It is that gift that will get us through all the monitoring, struggles and stress that comes our way.

 


Bombshell & hope in one appointment

I couldn’t write after Alex’s appointment Friday. Just too emotional to let him go and my thoughts were just all over the place. So I will recap his first Xolair appointment now

We saw Alex’s specialist to talk about starting his Xolair treatment. We thought going there that he would receive his first injection but the insurance company specified the pharmacy it needed to come from and it’s not yet in. It was good though that it was not in because it gave us a good opportunity to spend an hour with his doctor talking about this medication.

He started by telling us that the greatest risk was an anaphylaxis reaction. Because of this he will give Alex the injection and then we will wait in the waiting room for two hours. So the treatment all together will take 3 hours (pre shot exam, shot and wait). Plus we will need to have an Epi on hand (which is always the case).

The next part of the conversation rocked me a little, or maybe a lot. He said that the second risk was an increased chance of malignancy. Jason and I knew this. We had read this online and noticed the risk is a .5% increase from the control group. We know this is a newer drug and we knew that there were many variables going into that. Were these people at a predisposition prior to starting Xolair? Were they in an age range that put them at a higher risk? Also there seemed to be many types of cancer listed so was this the drug or the patient? The doctor told us that while he is concerned by this increase he does agree that without a specific type of cancer being prevalent he is not sure it’s the drug that is causing it.

Then here comes the bomb. I ask, “If this were your child would you take the risk?” to which he replies, “If my child were Alex yes. I have never come out and said this to you before because I know you know this. But Alex’s lows are so low that I think that there is a great chance we will lose him in one of these episodes. Much higher than the chance that he might get cancer from this.”

WHAMMO! There it is. The unspoken elephant in the room. My heart breaks because he has just acknowledged my greatest fear. I have always eased this fear in my mind by telling myself that I am just being dramatic. That it’s not that bad. Denial has been my drug of choice and now denial has been called out. What do I do? Where do I hide? Now I must face this really real fear of losing my son. I must admit that this fear is not only my driving force for all I do, but the driving force of his specialist to get these meds approved. This fear is no longer the irrational thought of a mother who is very emotionally invested but also the fear of an amazing and highly trained asthma specialist.

I think he saw the panic in my eyes after this portion of the conversation. The topic changed very quickly. But at the end of it all he looked at Jason and I and said that this is exactly why we are Alex’s parents. Because we are willing to do everything that he asks without question and fight for him.

Well, A-Man , you have my word that your Momma and Daddy will always do just that!

I spent a good portion of the remaining weekend holding Alex. Trying to calm this fear yet again. Did it work. Maybe. I feel hopeful that in the coming weeks we are being proactive to making this outcome a non-option.  The weekend was tough though. After the allergy testing, spending a good portion of Saturday outside enjoying the overcast warmth and Sunday outside in the pool, his allergies were in full swing and his breathing tight this morning. But we did what we always do and took care of it.

His first injection of the Xolair will be next Tuesday the 23rd. Then the following week we will start allergy shots three times per week. We are gearing up for this journey. Making arrangements with work, daycare for the other kids, planning meals that can be frozen and reheated quickly for those nights. Things seem like panic mode right now. But I think that is just the fear of the unknown. I am certain like anything else in life a few weeks into this we will develop a routine and it will be okay.

In the mean time I will keep you all posted when developments occur, when we are having rough days and need extra support or whenever a random thought pops into my head. Love you all!


Today is the day!

So the day is here. The Xolair has been approved as a trial for Alex and at 1 we will meet with his Dr to go over the details.

I am a mix of emotion..

I am happy and excited that things may change for Alex. He deserves a turn for the better. I feel proud that we are finally doing something to be proactive instead of reactive.

And in the same breath I am scared as all get out. What if these injections are not the Great White Hope that we have been praying for? What if he has an allergic reaction to them? What if he completes them and nothing happens?

I am trying to convince myself that I cannot worry about the what if’s. The only thing that we can do for Alex is something. Today we do something. I cannot do let fear keep me from taking action.

So today we, despite our fear, choose to act. We are so thankful for his doctor and nurses who have worked so hard to give us this option and we will make their hard work be for not.

Keep your fingers crossed!