Today was Lizzy’s first chemo day. But before we could make the trip to Cincy, Lizzy got a visit from one of Santa’s elves (aka Big Brother Colson):
After the elf visit, we made our way to Cincy for what we thought would be about a 2 hour appointment. Two hours turned into 3.5 hours and we were told to expect visits from this point forward to last closer to 4 hours.
Since this was the first chemo visit, we had a lot to learn and a lot of questions. Turns out there is a very defined protocol for chemo treatments, complete with triple and quadruple checks on everything. Which is actually a really good thing because we are dealing with some very potent medicines (aka poison).
As always, Lizzy was an absolute trooper. The first major event was the Child Life specialist came in and had Lizzy assist her with a Line placement into “Mia”. The specialist went step-by-step showing Lizzy what happens when a line is placed into a port, and she had Lizzy perform each of the steps. It was great!
(Lizzy with her patient, “Mia”)
Next, the doctors came in and explained everything to us and answered all of our questions (and there were A LOT of questions). They probably stayed in the room 20-30 minutes, making sure they had answered all of our questions. At one point, Lori even asked “Ok, what questions do other parents ask that we haven’t asked yet?” The doctors laughed and said that was a GREAT question!
Then, the doctors examined Lizzy, and 2 nurses took her height and weight (again) to re-verify the earlier numbers. After all of that was completed to the satisfaction of the doctors, the chemo drugs were ordered from pharmacy. Today Lizzy received 2 drugs and we are hoping and praying that the treatment stays as a 2 drug cocktail. We have about another week before we know final treatment regimen.
Then came the most difficult part – placing the Line into the port. The port is a small round receptacle placed under the skin, just below the collarbone. A tube runs directly from the port into a major vein near the heart. All of that apparatus is internal. Externally, when it is time to administer chemo, a small needle is placed into the port and a tube attaches to the needle and the chemo is injected into that tube. Thus, once the needle is placed into the port, Lizzy doesn’t really know when the chemo drugs are injected. So, placing the needle into the port is the challenge.
We put numbing cream on the skin above the port so that when it came time for the needle stick, she wouldn’t feel it. The numbing cream worked, but the build up to the “poke” as well as all of the precautions that take place to get ready for the “poke” are pretty intimidating and it caused some fear and anxiety for our sweet girl.
Once we finished with the “poke”, we had time to sit and try to relax as we waited for the chemo drugs to be delivered from pharmacy. The clinic staff were great and gave us lots of ways to pass the time. We finally decided on watching “Beauty and the Beast”.
Interestingly, once the chemo arrived, it was a very short process. The first chemo drug took 5 minutes to administer and the other chemo drug took 3 minutes. Not a lot of time for such a potent mix of drugs.
(Daddy and Lizzy watching “Beauty and the Beast” while chemo is being administered)
Once both drugs were administered, it was time to remove the needle and all of the tape holding it in place. This would seem to be a relatively minor step, but the area around the port is very sensitive, so peeling the tape off wasn’t without some tears and some pain. The nurse was fantastic – so patient and compassionate – and she used some special solution to help minimize the pain when peeling off the tape. She was really good and we are thankful for such a wonderful nurse for Lizzy.
And with that, it was over. We’ve been told about potential side effects (nausea, joint pain, foot drop, hair loss), but not all patients get all side effects, so the next few days will be spent watching and waiting to see if any of those things develop. If they do, the doctors have options on how to treat the side effects.
It was a long and exhausting day and we are glad to be home for a few days. At this point, chemo treatments will be once/week and should be outpatient, but those chemo days will be full days.
As always, thank you so much for your love and support, your prayers and your generosity. It feels like the journey really started today, and it also really hit home that this is a marathon, unlike the sprint we’ve experienced the last two weeks. God has given us the strength we need each step of the way, and we know with 100% confidence that He will continue to give us the strength we need, when we need it.