Today is Felix’s 1 yr cancer diagnoses day. It’s feels like yesterday I was looking up his lab work wondering why is his WBC count so high and his hemoglobin and platlets so low?I remember calling the Dr to tell her I think something is off in his blood work. I remember she happened to be on her lunch break which gave me more time to investigate. I remember going in for his chest x Ray and taking a picture of it knowing something didn’t look right and asking the really nice x Ray tech if he saw anything and he replied “it looks ok” and asked us to wait in the waiting room till the radiologist looked at it, knowing that wasn’t good. I remember going into the cafeteria and happen to run into the Fee’s doctor and being happy because it’s always hard to get into see her I remember pulling up his bloodwork on my phone and showing her right there in the cafeteria and her immediately taking action and ordering a CT scan so thankful for that. I also remember the doctor throwing around the C word and thinking she was jumping to conclusions. I remember going into her office and her actually saying the words it’s most likely cancer. I also remember her saying to pack my bags for 30 days that we are going to be medevac to Boston Children’s Hospital and what did I ask? I asked if we could leave the next day! I needed to situate my other 3 kids I also didn’t understand how serious it really was. Her answer was NO!! I remember after we left her office sitting in my car in my driveway in shock not even able to cry, it was just sheer blankness. I remember calling my sister-in-law and my brother and my brother coming right over I remember looking at the shock and Fear in his eyes and confirming that shit just got real. I remember calling my sister who immediately got on a boat and came over to the island I remember calling two of my best friends who dropped everything to come to my house and help come up with a plan. I remember the first couple days in the hospital the first chemo therapy the first lumbar puncture. I remember feeling so overwhelmed with how to juggle being in the hospital with my son and having three other kids at home and not knowing what the plan was or how to navigate anything that was going on. Thankfully Harris was there and has been my rock during this whole thing. I remember the long first days and nights in the hospital sleeping on plastic chair switching from the floor to the plastic chair with Harris who was by Felix I my side every second of everyday and still is. I remember constantly googling looking up medical journals that had anything to do with chemo therapy or T cell leukemia, I remember sleepless nights, constant beeping IV machines, nurses in and out through the whole day and night. I’ve learned how to hold a puke bucket while driving, administer chemo, navigate pain management. I’ve learned about reiki, cbd oil, supplements, nutrients, food, social work, research, integrative therapy, hydration, handwashing, germs, viruses, vaccinations and illnesses of all kinds,I’ve learned how to read labs results and medical records to name a few. I’ve also learned about bravery, resilience and most importantly love. I remember the sheer exhaustion Harris and I felt and still feel that first month in the hospital, where we had no clue what was happening but we were letting go and trusting the process. I also remember our family and friends love and support and unfailing devotion and kindness that carried us through that first month in the hospital and continues to carry us today. I will forever remember and always be so very greatful for you all.
So much has changed, relationships strained , friendships lost and gained expectations sacrificed, God knows my other children had suffered too. I lie awake at night worrying that I have shortchange them a good part of their childhood trying to navigate this cancer road but the hardest part is that I can never go back, never again Will a fever just be a fever, leg pain be leg pain a bruise just be a bruise. I will never again feel reassured that something terrible will never happen to us, that my child would never get cancer. I’ve learned about this whole other world where children have cancer, families are turned upside down and how childhood cancer isn’t rare. Once your in This world( and I pray you never are)your regular world you were once in seems so far away and you have not much in common with it or anyone there, it seems like it at least. Felix’s Cancer Hasn’t made me a better person I am not necessarily wiser or stronger if anything I’m harder and quicker to walk away from those that might not understand. I find I have less tolerance for the dramas of the non-cancer world. I am not more confident I need harris to hear everything the dr have to say so he can confirm things for me. I must say their is no way I could of done any of this without him. Gosh, We are tired so so tired!! So One year ago today Felix was diagnosed with leukemia and today and tomorrow we will celebrate his bravery his resilience his positive attitude and his life in general. We will celebrate how he’s gotten through 1 yr of this 2+ yrs of treatment/chemo, We will celebrate as a family together, and for Felix just being home with his brothers and sister is enough. We are so thankful for all the people around us and this amazing community. I am so grateful for all of you. So 1 yr down and 1 to go. cheers to Felix never spending another Christmas in the hospital. Have a happy holiday.
Best , Heidi