I have nothing but good news to report. Tuesday we arrived at Primary Childrens about lunch time. I was relieved to see a security guard set up in the middle of the entrance asking people why they were there and asking them to sanitize their hands before entering the facility. I’ll admit I am somewhat concerned about coronavirus. I have been surprised by the lack of anxiety I had around having these scans but the minute I entered the hospital I was definitely feeling it. We headed up to the clinic and got checked in. The clinic was super busy but they were able to get us a room where the IV team drew labs and placed an IV that would be used later that day to administer the contrast needed for the scan the following day. Liam is so good and really when in public becomes a total observer taking everything in and I’m not sure if that is his personality or just the fact that we have been isolated for months. We placed cotton balls in his diaper so we could collect a urine sample as well. Then we headed down to nuclear medicine to get his contrast placed. Doug greeted us shortly after check in and took us into a CT scan room that wasn’t being used to give Liam the contrast. Before giving him the contrast he had to drink some potassium iodine that would protect his thyroid from the radioactive contrast. I didn’t even know this was a thing….still learning new stuff every time we go to the hospital. Liam did great but pulled some pretty terrible faces while taking it. The contrast administration was short and simple and took less than 5 minutes. Then Doug took out his IV and we were headed home until the next morning. All in all we were only at the hospital for 90 minutes.
Once we headed for home we picked Emery up at my sister’s house. I have seen my sister very little since Liam’s diagnosis and it’s been hard. She is one of my best friends. Quarantine can be very isolating and hard. I wanted to stay and visit but noticed I felt very anxious after leaving the hospital. As I was driving I was thinking through why I felt that way and realized that we haven’t taken Liam to another person’s home in months. It has nothing to do with how clean the person is or anything like that. If I occasionally take him to the store he wears a mask and I wipe the entire cart down with clorox wipes when we finish I wipe down his hands and sanitize them...its for the most part a controlled environment and even though Liam is doing well my protectiveness hasn’t changed. I was relieved when my sister said they were playing in the backyard. It was so enjoyable to watch Liam play on the grass, on the slide, and just be a kid. I loved visiting with my sister and having some in person adult interaction. After we returned home I changed his clothes and wiped him down from being at the hospital. And went throughout our day until we had to go back the next morning.
Wednesday we had to be at the hospital at 9:30am. Kerry came after I got the two older ones off to school and to be with Emery while I was at the hospital. I checked in at the procedural center and to my surprise they were ready early for him. For all of his scans he has to be sedated at this age so he can’t have anything to eat after going to bed the night before so getting in earlier is always a good thing. They placed a new IV, did vitals, and had the nurse practitioner (who does the sedation) come talk to me. Shortly after we arrived Joy was able to join us.
Tuesday night I felt like I should ask her to come with me to the hospital. Matt was out of town so I was planning on going alone. I was grateful she was able to make arrangements to be with Liam and I. The hardest part of all of these visits is when I have to leave him. Once he starts to fall asleep I have to lay him in the scan table and trust that the team will take good care of him. I really like the procedural center and the way they handle things. They all seem to know him and I have at this point met most of them so they are familiar. They said the test would take 40-60 minutes so Joy and I went to grab some lunch at the cafeteria. I called to update Matt and waited. After we finished lunch we headed back to the waiting area and before we had even sat for 5 minutes they called us back...he was done. She said he had done great and was just waking up. When we got back to him he was crying but once I took him he settled right down and went back to sleep. I haven’t seen him this sleepy after a scan ever but it also was naptime so they said that had an effect as well. We let him sleep for almost an hour before he was awake enough to take a bottle before falling asleep again. It was coming up on our appointment time so we used a cool washcloth to try to get him a little more awake then headed upstairs to meet with Dr. Fluchel.
When we got upstairs to the clinic we visited with a couple of the nurses and gave Liam another bottle. Then as Joy and I sat visiting Liam went back to sleep. When Dr. Fluchel came in, he did a fantastic job going over everything. The MIBG had come back with virtually no glowing(no active cancer) it appeared to be slightly smaller than when we had scans in New York just a couple weeks prior. His lab work showed everything coming back into normal range. And his urine showed no signs of the tumor markers that were previously there! Dr. Fluchel explained several things that, had they been explained initially we may have never felt the need to go to New York. Several things that had been said along this journey now made way more sense. I was so appreciative that someone had finally taken the time to care about our son. We cover what life off active treatment looks like and what we could expect for follow up. We will do follow up every 6 weeks. Scans will be every 12 weeks and a urine test every 6 weeks so we would only have to go to the hospital every 12 weeks. We no longer have to call for fevers and they encouraged us to see our regular pediatrician for no cancer related issues. I felt very reassured as the conversation continued...this Dr was just what we had been looking for. Liam slept the entire visit but woke up just as we finished so he could be assessed and then we headed home with nothing but good news. As I drove home I tried to process everything that had happened not just in the last couple days but over this entire journey. I felt gratitude, so much gratitude but at the same time it all felt surreal and I cautious to not feel too excited like it may be taken away at any moment. I also felt guilty that so many struggle with this much longer than us and how did we get so lucky/blessed. But even with all the emotions Im grateful for the love and support for all of our family and friends. Because of you, all of your prayers, we have felt so much peace through this entire process. We hope the worst of this is over and we can slowly start to figure ]out what our new “normal” looks like.
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