When this journey began 2 months ago (it’s only been 2 months? Really? Wow, it sure seems longer than that!), we knew we were headed for a New Normal. But we really had no idea what that New Normal would like. Nor did we know what adjustments we would have to make, what battles lie ahead, what obstacles we would encounter, what victories we would enjoy. In short, we didn’t know what we didn’t know!
I think we are finally beginning to get some answers.
Now we know that clinic days are long days. We know the night before clinic day, Lizzy gets very nervous and anxious thinking about what’s going to happen the next day. We know that means one of us (usually Lori) is going to sleep with Lizzy the night before to comfort her and help her be able to get some sleep.
We know to drive to level P2 for parking, take the elevator to A1, and walk into the Cancer and Blood Disorders clinic where we will check-in and Lizzy AND Teddy Weddy will get arm bands.
We know we will check Lizzy’s height, weight and blood pressure then go to our “room for the day”. We know to get settled in and get ready for the parade of people who will knock and enter the room – a continuous stream of people over the next 3-4 hours.
We know the most difficult part of the whole experience is when it’s time to access the port. We know Lizzy gets very nervous, her giggles and smile turn to worry and tears, and we know Lori is going to put her in her lap, hold her tight and keep her from turning her head and watching.
We know once the port is accessed, she immediately relaxes and starts talking a-mile-a-minute! We know the doctor is going to come in, exam her, tell us everything looks good, and then give the order to release the chemo. Then we know we wait.
The next we know, the nurse knocks and enters, pushing the infusion pump and holding a plastic bag with big red letters that say BioHazard. The chemo has arrived. We know the nurse will get gowned up, including face mask and gloves – this is dangerous stuff.
We know there is 30 seconds of cleaning the end of the access tube, then 30 seconds of drying time. Then its time to hook everything up and let the infusion begin. We know when it’s one drug, infusion time is 5 minutes; when it’s two drugs, infusion time is 8 minutes.
We know when the infusion finishes, it’s time to de-access the port. We know once all of the tape is removed and it’s time to pull out the needle, I will hold a picture of Lizzy’s 4th birthday cake right in front of her face and count to 3. When I get to 3, Lizzy “blows out” her candle at the exact same time that the nurse pulls the needle out. Lizzy never feels a thing and just like that, it’s over.
We know it takes us several minutes to pack up all of our stuff, say goodbye to everyone, get the parking ticket validated, and go back down to P2 and get in the car.
We also know that we are going to stop for some food, and that Lizzy gets an infusion of energy from the chemo, so there will be lots of talking and singing and other interesting moments as we drive home.
And finally, we know when we get home, Treasure will be there, anxious to tell us about her day. Often Colson is there and many times so is Grandma and they fill us in on the days happenings. Then it’s on to dinner, bathtime and bed time and life moves on.
In the big scheme of things, I don’t think having a 4 year old receive chemo therapy is “normal”. But for us, it has become the new “normal”, and what we’ve come to expect. So when everything happens just the way I described it, we consider it a good day – a normal day.
Today was a good day! Lizzy’s hemoglobin stabilized at 8.4, she actually gained 0.3kg and the rest of her blood work is trending in the right direction. We are truly thankful and blessed because today was Normal.