As I sit here thinking about the past few months, I can’t believe all that our family has been through and has overcome already. I am so excited that we finally get to go home tomorrow for nine days, it feels so surreal!!!! I am beyond ecstatic and cried tears of joy when I found out. A break from the hospital is much needed! These past almost four months have been wearisome to say the least, we’ve only been home for five days since Logan was diagnosed on March 8. (April 4 to April 9). We’ve been through three rounds of chemo, two major brain surgeries and multiple other surgeries. Not to mention numerous setbacks, side effects and a range of emotions!
I’ve said it before and I’ll say it again, as much as this whole situation sucks, it was meant to happen, Logan chose us to be his parents for a reason. Don’t get me wrong…I HATE that my son has to go through this but WE can handle this and WE will OVERCOME! Sometimes I sit and think that it’s not fair that someone else who is not so well off has a healthy child but if Logan was born to someone like that, he may not have had as much of a fighting chance as he does being our son. Kevin and I not only have the support and financial means to be there for our son but we are also very blessed that I have the job that I have that I can take the time off work, as long as I need, to help care for our son and get him the help that he needs and will need in the future. Yes it sucks that our son was born with cancer but we truly are lucky and grateful for the means that we have to help him get better! If I didn’t work for Aflac, I wouldn’t have a flexible schedule, I wouldn’t have residual income, I wouldn’t have an Aflac cancer plan….all these things couple with my in laws being retired and able to help out whenever needed are true blessings. Logan is our miracle baby and will continue to be that as he kicks the puck out of cancer. This kid is going to have so many stories to tell. We will have to get a notebook for him to keep track of which scar is from what surgery and explain to him how much he has overcome.
With all this being said, I do have to say that this round of chemo was the WORST!!! We had so many obstacles to overcome. I hit rock bottom. Watching your child suffer the horrific side effects of chemo is heart wrenching! Logan stopped taking the bottle at the end of Round 2 then after the second brain surgery (tumor resection) he stopped taking his binky. He was being fed through an NG tube (a plastic tube through the nose, past the throat, and down into the stomach) for weeks then a few days after we started Round 3, he wasn’t tolerating his feeds anymore. He couldn’t keep anything down, he would spit up every time they would increase the speed so then they would have to stop and restart again. It was awful. They finally decided to remove the NG tube and switch him to TPN (Total parenteral nutrition supplies all daily nutritional requirements via IV).
Now, let’s take it back to the day before that happened. The doctors had scheduled an eye exam for Logan because there was concern he wasn’t tracking and hadn’t been for two days! Mind you, I was on the way to my own doctor appointment, cried all the way there, in the appointment and on the way back to the hospital as we waited 5 hours for them to check Logan’s eyes after they dilated them. Watching them pin him down on the bed and pry his eyes open to look inside them was nauseating! And guess what….his eyes were (are) fine!
Fast forward to about day 17 of Round three and Logan’s heart rate spiked to about 180 bpm while he was sleeping and morphine didn’t touch it!!! They then decided to do an EKG around 1am. Thankfully that showed no concerns but why was his heartrate so elevated?!?! We attested it to pain and just continued to monitor him. By the next morning his heartrate was normal and he was fine. A few days later his heartrate spiked again followed by a fever. It was then determined with blood tests that he had an infection. They drew labs from his central line and from his foot to see where the infection was. Thankfully the infection was only in his central line. They immediately began treating it with antibiotics. A few days later his heartrate was elevated and he spiked a fever again so they decided to remove the central line. WOW! Thankfully after the central line was removed he had three days of negative cultures. Unfortunately they had to put an IV in his foot and in his head to administer his TPN and his antibiotics. That was only for a few days then they put in a PICC line (peripherally inserted central catheter). So that’s another surgery in the books for Logan. I have lost count as to how many surgeries this poor kid has had but I will tell you he handles anesthesia like a champ (put that on his resume…lol). This infection set us back about two weeks, we were hoping to go home earlier but this was just another bump in the road!
I have no doubt that Logan WILL beat cancer and he will continue to have successful surgeries but the hardest part is watching him suffer the side effects of chemo and the surgeries…..from spitting up bile, dry heaving, muscle atrophy (he can’t hold his head up on his own anymore), he doesn’t take his binky (he LOVED his bink!), he has a hard time swallowing, he can’t suck, he won’t take a bottle. He’s seven months old, he should be trying real food, rolling over, sitting up (this makes him sound like a dog)….but I can’t compare him to other kids, he is special and has his own path!!!! He WILL overcome these deficiencies. It might take some time but this kid is definitely bound for great things!!!! It’s also scary when the doctor tells you that the more they talk about Logan’s diagnosis, the more they realize how rare his case is! However, a lot of this is because we found and treated the tumor early with no symptoms. In some cases these types of tumors are untreatable in infants. The fact that Logan’s tumor is a congenital GBM allows for an aggressive treatment. Logan has tested positive for certain genetic markers, these markers allow the Doctors to collect data which will enable the development of new treatments. So, this is ALL GOOD STUFF!!
His counts are UP and we are going HOME TOMORROW!!!! I need this time home more than anything, our family needs this time together. I will always be here for my son and support and advocate for him but when you live in a hospital 24 hours a day, 5-7 days a week on top of the emotional roller coaster, it wears on you! Now that we are going home, I am feeling much better. I need this break….I need to rest, recharge and reorganize. We have been in the hospital for almost 4 months with a 5 day break! We have two more rounds inpatient then Logan will have another year and a half of maintenance therapy. We have a long road ahead of us but we will OVERCOME! There are still so many what ifs, what’s next, etc. but we have to remain positive, we have to continue to fight and pray!
We are all #LoganStrong!