DISCLAIMER: This post contains some language that people may or may not find offensive. I’ve censored it as much as I can without sacrificing any realness. Sometimes, the F-word is the only one that fits, and I’ve just come to accept that.
I have been meaning to get back to a more regular blog posting schedule because I’ve just got so much to say, and it’s good for me to put some of my thoughts down so I can make room for all of the other things I’m thinking about… yes, I realize that I sound like a completely crazy person. But this is my life, and it is pretty crazy…
Anyways. This has been one hell of a week. Every day was packed full of something– whether it was trying to enjoy at least one day of summer by going to a baseball game to see the eclipse (SO COOL), doctor’s appointments, medical procedures, visiting friends, doing things with friends, doing things for friends, being a friend, being a sister, being a mom, being a daughter, being a daughter-in-law, being a wife, house-building things, daily task things, shopping things, blogging things, networking things, birthday parties, residency things, responding to a million messages… every single day left me with absolutely no energy leftover. So when the boys and I were done snuggling like we do every night, they went to bed, and so did I. Being pregnant isn’t really helping with the whole energy thing either, so there’s that.
During the cluster-f**k that was this week, we did receive some pretty amazing news. Like really amazing. I’m pretty much on cloud nine, and I will probably remain there until I sort through the pile of medical bills that is sitting on the kitchen counter #firstworldproblems. Reese was supposed to have a CT scan this week to see how well or if his tumor is responding to the chemo he’s been getting. So far we’ve been through four cycles of chemo.
This CT scan was going to be critical in determining what Reese’s prognosis was going to be, so we’ve been anxiously waiting for it for months. You can probably imagine how stressful and terrifying that would be.
The day of the scan was stressful. There was a miscommunication, and we ended up showing up to the hospital late. We were under the impression that Reese was only going to need IV contrast for the procedure, but they actually needed him to ingest the contrast in addition to receiving it via IV. The stuff that he had to drink was apple juice-flavored, and he was supposed to drink half of a big cup of it. Obviously, toddlers have minds of their own, and they don’t understand that you’re supposed to follow directions, so it was quite a feat to get him to drink that stuff. Once he did, we had to wait another hour before the scan.
When it was finally time for the scan, Reese was terrified. He was crying and screaming, and he didn’t want to lay down on the table. We were hoping to do the scan without sedation since it’s such a short amount of time, but he was too upset, and his moving around would have interfered with the results. So back to the triage room we went to wait for the anesthesiologist. Once he got there and got Reese’s medical history, we had to wait to be worked back into the schedule.
No matter how many times you experience your child undergoing sedation, it never gets easier. Watching his eyes roll back and his head fall onto the pillow as they lay him on the table is an image that will bring me to tears every single time. He just looks so helpless. Helpless, but peaceful. And it scares the sh*t out of me. Every time.
A few minutes later, he was finished, and the scan went smoothly. Now we just had to wait until our oncologist and the pediatric surgeon could read the scans, and someone would call us to go over the results. And we had to wait an hour for observation– just in case there were any adverse reactions to the sedation. Because you never know.
By this time, it was well past noon, so Matt had to go back to the clinic (since he’s a resident), and that left me alone with a sedated Reese. A sedated Reese that hadn’t eaten or drunk anything (other than the contrast) since 8pm the night before. This would have been totally fine had he come out of the anesthesia on his own time.
Unfortunately, one of the nurses came in to flush his line while he was still out, and since he was laying on his side, she had to move him so she could reach the line. BAD IDEA. The motion jolted Reese out of a peaceful, deep, drug-induced sleep. And not only was he disoriented, but he was totally HANGRY. The kid starts flailing around like a rabid mongoose– clawing at my face, using his head as a weapon, and essentially beating the sh*t out of me. It took every ounce of energy and control that I had just to restrain him to keep him from squirming out of my arms and hurting himself. He was screaming and crying. And I’m the only one in the room with him. I’m pregnant, tired, frustrated, and I LOSE MY SH*T. I sit in the chair in the corner of the room, holding my possessed-by-a-demonic-force child and just sob. Why does this have to happen to him? Why does he have to go through this? Why do I have to pee all the time? Why do I have to be pregnant right now? Why couldn’t the nurse just leave his line alone until he was awake? Why does Matt have to work so much? SO MANY WHY’S. Can’t even deal.
Eventually, after some tearful pleading with and possible death threats to him (that I totally didn’t mean BTW), Matt walks in the door to save the day. I know he was supposed to be working. I know how awkward and uncomfortable it makes him feel to have to make an excuse and leave for a few minutes. But in that moment, I needed him. I needed him to be husband and father Matt, not Dr. Matt. He helped me calm Reese down, and helped me calm down, and then he was able to go back to work. I can’t thank him enough for being there for me that day.
Once Reese had calmed down, I got him dressed, and the doctor came back around to see him. He said we were good to go. So off to Chick-Fil-A we went, to drown our sorrows in chocolate milkshakes. Those always help. A dear friend met us there, and she sat and listened to me bitch and complain about how awful my morning was, while our littles played on the indoor playground. It was just what I needed.
And then I get a phone call from Matt.
He informs me that he had gotten to meet with our oncologist to look at the results of Reese’s scan. And I am still down on my knees praising God for what he said next.
For those of you who have been following Reese’s cancer journey, you know that our diagnosis was stage IV high-risk neuroblastoma. When we discovered the tumor, it extended through his entire abdomen and up into his chest and lymph nodes. When it’s classified as high-risk, there’s not usually a good prognosis, and things can really go either way. Some kids respond to treatment, and some kids don’t; but either way, neuroblastoma is an aggressive cancer.
Reese’s new scans revealed that his tumor had shrunk down so much that our surgeon is willing to go in and attempt a complete resection. There is no evidence of cancer in his chest, and what’s left of the tumor in his abdomen has some calcification in it which leads us to believe that the tumor is no longer active. Basically, we couldn’t have hoped or prayed for better results. Reese has been completely responsive to the treatment, and it is working to cure him.
Right now, that is what I am going to cling to. Because I know that all of that can be taken away in an instant. There is a possibility that he could stop responding to the treatment. There’s always that possibility. But I’m not going to think about that unless it happens. Right now, the treatment is working. Right now, Reese is kicking cancer’s ass. Right now, we are winning this fight.
We still have a long road ahead– surgery, followed by cycle five of chemo, followed by two cycles of intensive chemo (at MUSC) and two stem cell transplants, followed by radiation, followed by immunotherapy. By that point, Reese should be cancer-free. But then we will have to live scan to scan, praying that each month that goes by takes us farther away from this chapter of life. If the scans are still clear at five years out, then the likelihood of this cancer returning drops significantly. I can only imagine how much sleep I’m going to lose during that time period, worrying about whether or not the cancer will come back. But for now, I’m going to enjoy this time. This news. This incredible news. My boy is beating cancer, and I have never been more excited.