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!