I have never heard the word scanxiety before until I started looking up hashtags on Instagram. My last post was on the day of Thomas’s follow up scan. We were called by our pediatrician the following day to give us the results. They were not what we had been hoping for. The original cyst grew, but not by much and now there was another one that had formed. It was their recommendation that we go for an MRI to get a clearer picture. I couldn’t stop crying. All of these thoughts went through my head and of course none of them were good.
We had an appointment to see a Urologist the day after Mother’s Day. We had thought that we were seeing them for a different issue. When the Doctor came in she pulled up Thomas’s last ultrasound images and proceeded to tell us that the smaller new cyst that just formed looked like it was on his kidney and was quite possibly Wilms Tumor. Umm…what??? Are you telling me that you think my baby has kidney cancer?? I honestly am not quite sure what was all said during this appointment. I do know I asked what we would do if it was shown on the MRI to be Wilms. The Doctor said that he would have surgery one to two weeks after the MRI. They would remove both cysts and send them off to be evaluated to confirm what they were. We were told that they don’t do a biopsy since it can cause the cancer to spread so completely removing it was the best option.
I managed to not cry until we got home. I just kept thinking that Thomas has cancer. How is this possible? My heart hurt, my stomach hurt, my whole body hurt. Every time I looked at him I cried. I couldn’t stop the tears from falling and I couldn’t stop googling. Crying for all the children that I would come across and for Thomas.
That night every time I woke up from sleeping I would have a little chat with God. Asking him to please be with Thomas and not take my baby from me. I think I repeated this process at least ten times.
The next morning when Thomas woke up I put him in bed with me to stretch and kick around and he kept giving me these big smiles. It reminded me of when I was pregnant with him and we found out that he was going to have BWS. I cried and cried, it seemed the more I cried the more Thomas would kick me. I think it was his way of telling me, “Mom I am ok, don’t cry.” His smiles made me feel this way too.
I managed to not cry all day until Máté got home from work. Then I couldn’t stop. He suggested that we go for a walk. I don’t know how he knew but that was exactly what I needed. There is just something about a walk.
We had a camping trip planned for that weekend. Our very first one with Thomas. I had been so excited to go on it, but after the news from the Doctor, I honestly didn’t want to go. My parents were so excited and they had just bought a bigger camper for all of us to fit in. I just couldn’t let them down, so I put a smile on my face and got us all packed up to go.
We went to a state park that was right by Lake Michigan. While my Dad was finishing setting everything up I took Thomas for a walk. There was a path not far from our site that went right by the lake. It was cool and windy, but I bundled him up and off we went.
As we were walking I told him that I loved him very much and I would do whatever I could for him. That I was going to give him the best life I possibly could. It was such a great moment for the two of us.
The weekend turned out to be a good distraction. The internet was spotty so no googling. We took a lot family walks and had such a nice time.
Thomas’s MRI was scheduled for Tuesday. Thomas had to have a six hour formula fast and a two hour clear liquid fast. This meant that we had to wake Thomas up at 2:30 am so we could feed him since our appointment was at 9. Well, in true Thomas fashion he ended up waking himself up at 1:45! This hasn’t happened in weeks, why did he have to do it this morning? Máté did a good job of holding him off until 2:15, when we fed him. We ended up giving him an extra ounce of formula since this would be it until after his scan.
We had to be at the hospital at 8:45 so 7 was the last time he could have clear liquids. We gave him some at 6:45 and he took it well. I thought we were going to be ok. He sleeps in the car and we would get to the hospital and they would get him going and all would be ok.
Boy was I wrong! Thomas was perfect on the way down, slept and didn’t wake up until we got to the MRI area. We changed him into the smallest hospital gown I had seen. They called us back and put us in a small room with a set of glass doors that led to the MRI area.
Thomas wasn’t taken back until 10! An hour late they were running. Poor Thomas was crying his head off. How do you explain to a four month old that he can’t eat because he has to have a test?? My Mom heart was hurting so much for him. Máté was holding him and trying to do the best he could consoling him. When the nurse came to get him I had the hardest time giving him to her.
The nurse told us that the scan would take about an hour, so we should go to the cafeteria and get something to eat. Then we could come back to the room and wait for Thomas to be brought back to us.
As soon as she walked out with Thomas, I collapsed into Máté’s arms a hot sobbing mess. I knew that they were going to give him some gas to make him sleep before doing his IV. So that did give me some comfort, but not being able to be with him hurt me so bad.
We went down to the cafeteria, but they were closed for an hour so it was slim pickings for eats. I had a Diet Coke and a yogurt parfait and Máté had a coffee and a cookie. Great breakfast. We stayed there for about 35 minutes and then went back.
Being back in the cafeteria reminded me of when Thomas was in the NICU. I am lucky to have two friends who work for the hospital and everyday that Thomas was in the NICU they would meet me for lunch. I would feed Thomas at noon, and then around one, go and meet them for about an hour. It would give me a nice re-charge, plus it is always good to be surrounded by your people!
When we got back to Thomas’s room it was a waiting game. The minutes went by so slow and family and friends kept texting us asking if Thomas was back yet. Finally they brought him back. His body was so limp in the nurses arms and he wasn’t moving too much. He still had his IV in and they had a board strapped to his arm to keep his arm from moving. As he was waking up he kept hitting himself in the head with it so the nurse took it off.
She told us that once he was more away she would come back and tell us that we could feed him. I think we maybe waited about 15 minutes.
Máté fed a very sleepy Thomas, but he ate really well. They wanted to keep him for a little while longer just to make sure that he was ok. His heart rate and oxygen levels were also being monitored. Just like in the NICU, Thomas wasn’t a fan of the pulse ox on his foot. It kept coming off. Around 12:30 we were given the ok to go home. We were so happy. I don’t think that I ever pushed Thomas out of there so quickly. Ok, maybe one other time when we were discharged with him from the NICU. I didn’t want anyone to change their minds.
We were told that the Doctor would have the result the next day. As much as I wanted to know the results I was terrified. We had an appointment with Urology on Thursday to go over the results of the MRI. The hospital uses an online system that we can log into to see appointments, test results, schedule appointments etc. The day before I saw that not only were we meeting with the Urology team, but they had an oncologist scheduled to meet with us too. Once again the tears flowed.
At one point I was exchanging texts with my Mom and finally had the courage to write the words that I kept thinking. “Mom I don’t want my baby to die”. The entire week from the time of the initial Urology appointment to the night before the scan I just kept thinking that I didn’t want Thomas to die. The internet is a scary place especially when you look up cancer. I was looking up everything and anything that was about Wilms. I wanted to have lots of information so that when the time came and the words, “Your son has Wilms” came out I would be prepared to ask intelligent questions.
On Tuesday night, the night of the scan, we were getting Thomas ready for bed when my phone rang. It showed that it was the clinic. I honestly thought that it was going to be a pre-recorded message reminding us of an appointment so I almost didn’t answer it. I was shocked to hear Thomas’s pediatrician on the other end. He had the results of the MRI. The MRI showed that the cysts in question were actually part of his spleen! WHAT THE WHAT??? I had put the call on speaker when I heard the Doctor’s voice so that Máté could hear too. Honestly the call was really a blur, because all I was focused on was the fact that Thomas didn’t have cancer.
We still met with the Urology team, but the oncologist doctor was cancelled. We met with the head of the Urology department and liked him from the start. He told us that he can actually order all of Thomas’s scans. Then on the day we have them, we can come to his office and he can tell us the results right away! No more waiting and wondering. He told us that our next scan would be in August.
That means for three months we get to be “normal” again. If I am being completely honest I have major scanxiety. I know it took awhile to get us back to my original intent for this post but bare with me. If you don’t know what scanxiety is, it is the anxiety that is associated with cancer-detecting scans.
I thank God that he watched over Thomas and brought us through this first scan. While I want to be happy, I have this looming anxiety over the ones coming up. Realizing that this is how the next eight years of our life is going to be overwhelms me. Knowing the feelings that I had over these last several weeks, it is hard to just have them leave. I do a lot of writing in my journal. Just trying to sort through everything.
I keep reminding myself that I need to live one day at a time. Don’t focus on what could happen, just focus on the here and now. So that is what I am doing. Focusing all my energy on making great memories with these two. One day at a time!