9/20/17 – WOW! I can’t believe we are done with the better part of being inpatient for 6 months and aggressive chemotherapy. It feels like the past 6 months have flown by but trust me, they didn’t! It was rough and still continues to be at times. Living in the hospital is the worst, having to pack a bag to stay with your baby for weeks on end is not the way any new mom expects to live their life! Thankfully I was able to come home every few days, even if it was just for a shower or to get a good nights sleep.
But now, the real work begins!
There is still no visible sign of the tumor so Logan is technically cancer- free but I am not comfortable using that term. Doctor’s call is NED or no evidence of disease. He technically won’t be fully cancer-free until he has been in remission for 5 years.
It’s actually becoming a very lonely experience. My husband is back to work. My in-laws are still around but I am starting to feel guilty asking my mother in law for help all the time. Both of my parents work. All of our friends work. So, it’s always just me during the day…alone, to not only take care of a sick baby but to also maintain a household and get some of my own work done, not to mention trying to work out and do “me” stuff. How hard is it to take care of a sick baby….well first it starts at 7am when he wakes up. He gets 4 medicines by 9am. We then do some physical therapy, stretches, sitting up, etc. We also practice the bottle. By the time we are done with that it’s typically time for his morning nap (if he feels like taking one that day). I then have at least one load of laundry to do from the morning or the day before. I try to update his followers, check both my personal and business emails then it’s time to sit him up and try the bottle again. Then on days we don’t have a doctor appointment or other places to be, I have phone calls to make for him. Whether it be scheduling a doctor appointment, an at home visits, early intervention, insurance, etc. It’s always something. I am legit overwhelmed and have a million things going on in my head at all times.
11/5/17 – So much has changed since I began writing this blog post back in September. We are now finishing up the first round of outpatient chemo, even with the hiccup we had. My in-laws left almost 2 weeks ago now, so it’s mostly just Kevin and I. THANK GOD Sari lives down the street and has been helping out A LOT!!! There are very few people I trust Logan with and it’s not because I don’t think they will treat him well, he needs a lot of work. Sari has experience with not just cancer and special needs children but she also ran a children’s play center.
I am trying to work more, as fourth quarter is the busiest time in my business. I actually have to get up at 4am tomorrow, go to an enrollment, bring Logan to clinic then head back to my enrollment. This is my life. But I will do WHATEVER it takes to not only help my son but also my own sanity! 😉
People always ask, “Aren’t you happy to be home?” And yes, I am BUT it is so MUCH HARDER at home. I don’t have a call button to push for help if Logan gets sick in the middle of the night, or if I need a break to take a shower or go get a coffee. I am “ON” ALL day long. I get up at 5am, get Logan’s meds ready, work out (if I’m lucky) and get his feed up by 6am. Then, I have to take a shower and get ready before my husband gets up to go to work, otherwise a shower doesn’t happen. From there, the day is really a blur. Between Logan’s feed going up and down about 4 times a day, he has therapy 4 days a week at home, laundry, dishes, phone calls, doctor appointments, emails, work, cleaning….the list goes on. The next thing I know, my husband is home from work and it’s time to make dinner. Then Logan’s feed goes up one last time and his nightly meds along with having to “flush” his PICC lines.
I have my moments, hard days, etc. but looking at this precious little boys face gives me the strength to keep going. I finally made the decision to see a counselor and I did like him, that’s half the battle. It’s just frustrating though because no matter who I talk to (professional or not), they all say the same thing….”you have every right to feel the way you do.” Which is absolutely true, I just wish I didn’t feel some of the ways a lot of the time. There’s times that I am miserable or cry for “no” reason. Or I am mean, just because. No one should have to live this life. The one thing I did appreciate from this counselor was that he said, I need to reach out to people more instead of waiting for them to reach out to me. He said because most people don’t want to intrude or know how to act or what to say, so I need to be the one to initiate the conversation. This was an eye opener for me because I was feeling and thinking the opposite, that people needed to reach out to me. But the truth is, the adrenaline is gone, the mama fight mode is faded and the reality of our lives is setting in. He also told me that I have every right to grieve or to not want to do certain things with friends that have “normal” children, and that it was normal to feel that way. That made me feel good. It’s hard because I want to do things but not only am I super overprotective of Logan and his immune system but I also find myself comparing Logan’s progress to friends’ kids who are the same age or even younger. And it’s so much easier said then done not to do that! I’m working on it!
I wanted to make sure I posted something before we start Round 2 of maintenance chemo tomorrow. Logan’s counts are good and he has been progressing so well that we are starting Round 2 a week early! This kid is a true Rockstar!
Oh, and he can now hold his head up and can almost sit up on his own!!!!
I’m working on getting more consistent help (thank you Sari) and getting somewhat of a schedule. So, I will do my best to update the blog more often.
But with that said….the next almost two weeks will be all about putting the finishing touches on this #TinySuperhero FIRST BIRTHDAY PARTY!!! He will be a year old on November 18th. You can mail him a birthday card to: Logan Strong PO BOX 2168 Scotia, NY 12302
Thank you all for continuing on this journey with us as we appreciate all of the love, prayers and support!