01/01/2024
This year has been filled with extreme highs and lows. We started the year off with the birth of our 2nd child. The one that completed our family. The child that no one knew the gender of until he was born. The birth of a child is so exciting even when you know the gender but for me, not knowing the gender made it even more special. Jepson wanted a sister because he said there couldn't be two mommas boys, but he was so excited when he came to the hospital and found out the baby was a boy.
While we were soaking up newborn cuddles, we were traveling back and forth to a dermatologist in Blacksburg about the spot on Jepson's arm. While oral medication and topical creams seemed to be working on the spot, Jepson was barely eating his favorite meals. I kept thinking it was because of the oral medicine he was taking, but more side effects started to appear. When we brought this up to the dermatologist, he said to follow up with his P*P. So, after missing a couple of days of school, from what we thought was a bad cold, Jepson started having trouble setting up and laying down, and the lympnodes on his neck and collar bone had become very visible. I took him to his pediatrician immediately and told her something was going on. I asked her to print out his growth chart. When she looked it over and saw that he had lost over 16lbs, she did blood work right away. After we left, she called and said his white blood count was very high. She asked me to bring him in the next morning for an x-ray. The doctor called a couple of hours after he had the x-ray to tell us he had pneumonia, but he didn't have it bad enough for his WBC to be that high. She told me she called the Oncology Office at Roanoke Memorial, and she set him up an appointment for Monday morning. I thought to myself, "Did she just say oncologist, why would we need to see an oncologist for pneumonia?" That was Friday, February 10th. Our weekend was full of terrible thoughts and Googling symptoms, which did come up as lymphoma. Not his exact type, but it did come in our search.
Monday morning came, and we're setting in the Oncology office that we are now very familiar with. The doctor looked him over and sent us into the hospital to have an ultrasound on the lympnode on his collar bone. I remember watching the screen and Jepson's face. He was squirming because she kept rubbing his lympnode. They were sore. He did not want them touched. She kept apologizing to Jepson, saying she was trying to get good pictures, so she didn't have to do it again. She got what they needed because the oncologist told us they would need to get a biopsy. So then we were off to see the surgeon. At first, we were told they would operate that Friday, but after taking his vitals and seeing his heart rate was so high, she said she would have to admit him. She wanted to start IV antibiotics and fluids. She didn't want to send him home to get worse and not be able to do the surgery. So, that same day, Jepson was admitted to the hospital. That's where we would stay until Sunday. That week was filled with lots of tears. He had bloodwork done multiple times, and they put him to sleep for scans.
Tuesday, February 14th, Randi came up after work to bring Jepson a Valentines Day basket. Before she left, a team of doctors and nurses came in to speak to us and to get more bloodwork! I can't even begin to tell you what all the doctor told us. The most I remember from that conversation was that he had fluid around his heart and lesions on his spine. I have no medical background, so I was lost. I knew the fluid around his heart wasn't good, but I wasn't sure what the lesions were. I just knew they were talking about them being on his spine, and my mind began to race. I imagined something happening to his nervous system and him not being able to walk. I tried to calm myself down so I could help Jepson stay calm because the nurse was having a hard time getting his blood. I could tell by the look on Randi's face that something was very wrong. Randi has a medical background so, she understood what was happening. They moved Jepson to the PICU that night and the doctor did the biopsy the next day. February 15th, 2023, the worst day of our lives. The surgeon came up and told us the lympnode, which she removed instead of just taking a sample of, definitely had malignant cells. She looked at it on the slide before they sent it for further testing. I was numb, and after the doctor left, I couldn't even speak. I think it was hours later before I could even cry. It was just pure shock. We spent the next few days in the PICU to get him stable. He was sent back to the Peds floor, and the oncologist came in Saturday morning to tell us he had Anaplastic Large Cell Lymphoma. I asked for a referral to be sent to UVA after we found out we couldn't go to St. Jude, because they did not have an open case for his type of lymphoma. I just wanted more eyes on his scans to make sure we were not missing anything. We got to go home the next day (Sunday), and then his appointment at UVA was the following day (Monday). That appointment was scary because they did more bloodwork there and found that his WBC had gone up even more! It had only been two days since his last bloodwork was done. And, honestly, the appointment was a little bit of a letdown. We went there for some reassurance, and we wanted to make sure that the doctors there were seeing the same thing as the Roanoke doctors . They only looked at his bloodwork they didn't look at his scans. They asked us why we were there, and when I told them a second opinion, they looked at us like we had two heads! I mean, isn't that what you should do? Get a second opinion/treatment option. They did give us another treatment option, but it was a lot more toxic, and he would have been admitted to the hospital 5 to 7 days every 21 days. After just spending a week in the hospital with him, we knew we couldn't do that to him. Plus, we had a newborn at home. I couldn't stand thinking about leaving Jayton every 21 days for 5 to 7 days at a time.
So, on the way home we called the oncologist in Roanoke and told them we wanted to come there for treatment and they told us they would call us as soon as they had a room available, we got the call a few hours later to pack our bags and come back. Jepson was admitted again, and we waited to have his port put in, but first, they had to get his heart rate under control. Wednesday came, and his heart rate wasn't any better. They decided to put in a PICC line to start treatment. They didn't have to put him completely under to do the PICC line, so the doctor's felt more comfortable with that.
He slept for hours once he came back from the procedure. Once he woke up, his heart rate started to go up, and his oxygen dropped. They ended up putting him on oxygen, giving him an EKG, and taking an x-ray to check the placement of the PICC line. The PICC line was the cause of his heart rate jumping up even higher then what it had been! The x-ray showed that the line was setting too low in his heart, and it was tickling his heart valve, so back to the PICU. There was an amazing doctor there that gently pulled the PICC line out just enough so it wasn't tickling his heart valve. His heart rate went back down, but he stayed on oxygen that night and most of the next day. He was able to get his first treatment that night. Watching that orange colored medicine, the one the doctors call the red devil, go through that line into my childs body is something I will never forget. I almost wanted to tell them to stop. I had to keep reminding myself that this is the treatment thats been killing this type of cancer for years. The PICC team came into his room the next morning and replaced his line. When they took the x-ray, they could see it wasn't in the right place. Ugh! Seriously, can something just go right! They tried working it back and forth, but it just wouldn't turn the right way. One of the team members had an idea. Let me try to flush it she said. She flushed it quickly, and sure enough, it turned exactly where it needed to be. I could've hugged her! Later that day, we were moved back to the PEDS floor. That Friday, we were able to go home!
And if you've followed Jepson's Jammin' Journey, you know the rest.
I'm not sure why I decided to share this now. I guess I've just been thinking a lot today about how the year started with such a high and quickly took a nose dive. Luckily, it has leveled back out, and we are so very grateful that it has.
Happy new year everyone! I hope it's the best yet! 🎉
