Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Maddox, Happy Birthday to you. A milestone birthday we have been waiting for since… you were born, to be honest! Not when you turn 16 and get your driver’s license, not when you turn 21 and can’t remember the night and not when you turn 25 and have a discount on your car insurance. But when you turned 6.
When we found out about Maddox’s diagnosis, I called an acquaintance and asked, “is this what your spouse has?” they replied, “yes”. I told them that Maddox has it and I will never forget the next few words as they have stuck with me for the past 6 years. “Within Maddox’s life time, there will be a cure, you just wait and see”. Here I am, 6 years later lost. (I’ll explain why a bit later – keep reading).
Here is how the last few weeks went. Rewinding back, we had our last CF appointment and Billie stated that all we needed to do was wait for Maddox to turn 6 and she would work on all the insurance paperwork for Maddox.
Maddox turns 6. I take the following week off and… no Trikafta. We had an original denial from the insurance/pharmacy companies instead. Thank goodness for Billie as she was all over the paperwork to get the appeal and next set of papers sent in. So, Maddox and I had a stay-cation. Packer’s training camp, trampoline park, mural searching, Kiel picnic (yea, he went on the round up), fishing with Grandma Karen, Grandpa Dave, cousins, all kinds of fun before school starts.
Then, it gets approved!!! Next I have about a hundred emails and phone calls to get an account set up with Vertex, the Trikafta maker and with our new specialty pharmacy provider. We go through all the possible side affects, how to properly take the medication, how to re order, what to do for missed doses, etc. The day finally comes that I have a delivery date scheduled for his Trikafta, to arrive on our door step during the first day of school! One thing I learned in all my conversations is that this pill can’t be crushed or broken up and it’s not in granular like his enzymes. Which means, we need to teach him how to swallow pills. LOL.
I quickly reach out to the CF moms facebook group to see how big these pills because his enzymes are huge pills – which is why we still pull them apart. A mom said they are about the size of a pistachio and another suggested applesauce packets. Maddox doesn’t like pistachios (and doesn’t like M&Ms either). We set out on an adventure to the grocery store to find something about the size of a M&Ms and Pistachio and came to Tic Tacs and more applesauce packets.
With practice and determination, Maddox was able to learn how to swallow pills in a matter of a few days. We are ready for this medication, whenever it gets here.
Guess what!? Its here!
The day arrived and we had this medication in our hands! We waited until the weekend to start it for ease of keeping track of when to order and just in case he has any negative reactions we were home to see and help if needed.
Just in case anyone is wondering they are about the same size of a Tic Tacs.
Vertex, the maker, sent Maddox an introductory kit with a ton of phamplets on side affects to watch out for, what to do when missing a dose, medication/food that can’t be taken with this (thankfully we doesn’t like grapefruit) and introduced the mascot for Trikafta, Cybark. Within the kit was a calendar with little magnets of all the days that Maddox has taken a full day of Trikafta.
We are so early into our journey and we really haven’t noticed any major changes with him yet, other than his nose isn’t running nearly as much. We are watching for the signs of concerns, keeping an eye on his eating habits, his mental stability, mood, energy – yea ok -mom is in true helicopter mode watching his every move.
This is why earlier I mentioned that I am lost. I really should be ecstatic that we have this life changing medication in our hands and have heard very positive feedback from other CFers. But as mentioned earlier, I am in hyper sensitive stage and really watching, waiting for something to happen – good or the bad and nothing’s happening yet. Which I am blessed that we haven’t had any known side effects and waiting for his body to adjust to start adding weight and to grow. My friends, his grandparents and even some of my co workers were way more excited for this to happen. I told them I needed them to be happy and excited to help me as I am just watching his every move. LOL. I know I am over reacting but when you have been waiting this long for something, you become cautious. I’ll feel a lot better at our next CF appointment, after our big annual blood draw and the numbers are starting to improve.
In the meantime, it’s high fives at every dose he takes it as he knows how important this medication is to him. In theory, if this medication works, all he will need to take is these 3 pills a day for the rest of this life. Cross your fingers, send your positive thoughts and say a prayer that this is exactly what he needs to live a normal life.