Today was the last day of Round 2. This round has been very rough on Logan and the rest of us for that matter. Round 1 was only 75% of the recommended chemo dose (they do that for all babies under 6 months old) and they bumped him up to 100% for Round 2 because he handled the first round so well. One of Logan’s incisions from his shunt surgery got infected and he spiked a fever. So, between the increased dosages, a corner of the incision re-opening, and his counts being down, unfortunately infection and fever is a risk with a compromised immune system.
Each round of chemo is 21 days. He receives 3 different kinds on day 1, 2 and 3. Then he receives a small dose on day 8 and again on day 15. Day 21 is when they would start the next round, following the same schedule, as long as Logan’s counts come back up.
Logan was okay the first week, with chemo on day 1, 2 and 3. Day 8 wasn’t bad but that’s when his counts started to drop. We noticed the area around his incision red and swollen on day 10. Not to mention, when they changed his bandage they had his port line rubbing on it….ugh!!! By day 11 it looked worse and I had to be crazy hospital mom and demand an ultrasound after they (the doctors) were back and forth as to whether or not to do one. Thankfully the ultrasound showed that it was just superficial; cellulitis was the diagnosis. They put him on two different antibiotics and Tylenol when needed. Day 12, Logan was in so much pain, he slept pretty much all day. I was heading home that night (my mother was staying with him) and wasn’t feeling right about it but went anyway. Before I went to bed, I made sure my ringer was up, normally I turn it off. Thankfully I did because I got a call at 2am from my mother that Logan was having trouble breathing. That was the scariest call of my life. Kevin and I immediately drove to the hospital. They had to call a ‘Rapid Response’ on Logan, which is a step down from a ‘Code Blue.’ They determined his breathing difficulty was because he was in so much pain. They had to give him morphine, and he slept through the night. Kevin went home around 3:30am and I stayed at the hospital with my mother. Of course, not sleeping, just watching him to make sure he was breathing okay. I finally went home around 11am Saturday, getting only about two hours of sleep. I was able to get a few hours’ sleep during the day, but that definitely wasn’t enough; I was completely exhausted. Kevin had gone to the hospital around 3pm to see how Logan was doing, and every time I was on the phone with Kevin, I could hear Logan in the background crying. My poor baby was in pain and I wasn’t there to help him. Thank god I was able to text Ali, who works in Dr. Adamo’s office and she was able to get a hold of the Neuro doctor on call to go see Logan. That definitely made me feel better, but I was still a wreck! There is no worse feeling in the world than feeling helpless when your child is in pain. I wanted to go back to the hospital but I was beyond exhausted and would have done Logan and myself, no good!
Day 14 was better, he finally ate, after not eating for almost 3 days. He still wasn’t eating as much as he normally does, but a little is better than none. Because he wasn’t eating for a few days, some of the doctors suggested to put a feeding tube (NG tube) in, which I refused each time. Why would I put a foreign object down my child’s throat when his immune system is compromised, when I know he just doesn’t feel well and will eat again in a few days? Same thing happened during Round 1.
That brings us to today, day 15. He got his final dose of chemo for this round. His incision looks worse but because his counts are going back up, they said it will look worse before it gets better because all of the good cells are attacking that location. He has had to have 3 platelet transfusions and 1 blood transfusion this round. His incision looked good, then bad, then ok to worse. I wasn’t there for him for over 24 hours, and I am going back to work tomorrow.
Let me now share with you the emotions I have felt over the past few weeks, some of which I have experienced in the same day….
I’m sure there are more but that gives you an idea.
I do not wish this experience on ANYONE. I do, however, still believe with all my heart that Logan is meant to be here and we are meant to be his parents and to face this. We will NEVER know why or how but Logan WILL ALWAYS know LOVE! That is all that matters. Kevin and I, as difficult as this has been between us as well, will ALWAYS support and do what’s right for our son.
This is the worst rollercoaster ride I have ever been on. There are days where I just want to cry, but know that I must stay strong for our son. I give him pep talks every day and I swear he understands me.
So, now we just wait for Logan’s counts to go up. Once they do, hopefully by early to mid-next week, they will do an MRI to see what the tumor looks like. Best case scenario, the tumor has shrunk enough to be removed. Worse case, we start Round 3. We are all hoping for the retraction of the tumor because this little guy needs a break from chemo!
And the emotional rollercoaster continues…