Updates from Jacob Hill's Grandmother today bring a flood of emotions. Today I find myself feeling many different feelings as I read Jacob's Grandmother's words from her updates she has tried so hard to keep up with for all of his very caring and supportive friends and family. These feelings are so hard to write and be able to express just how strong they are, from Hope and Relief to Sadness and Hurt, but then one little smile from this very strong and brave boy takes all those emotions and pulls them together and inspiration takes over and you just know he is going to get through these sessions and be perfectly healthy and happy!
I still feel the same as I felt the first time I wrote about Jacob and that is that I can not even begin to know what he and his family are going through and I would not try to express those emotions, I am going to let his Grandmother tell his story in her words with her updates as only a Grandmother can tell them.
Jacob's Journey, updates by his Grandmother Lynda Pray Phelps:
Jacob update - Shannon and Jacob had a pretty rough day and are pretty worn out so here's all the details I know. Jacob developed a deep dry cough this past week. Most likely a side effect of the HU3F8. After being heavily sedated and the infusion started, Jacob began to cough uncontrollably. They were working to get the coughing under control so that he could breathe and his heart rate went over 200. He couldn't talk and tell them about the pain, because he couldn't stop coughing so they had to guess that it was the pain causing the rapid heart rate and gave him dilaudid. They used up the limit on the benedryl and codeine cough medicine and finally after the infusion he was able to rest a little. Since this is a new treatment, they weren't sure what the side effects would be - Coughing apparently is one of them. Round 2 down - 22 more to go ! Just sitting at home waiting on news from Shannon about Jacob. The second infusion is about to start. She said he is still having leg pain from last week and he has a deep cough that I can hear in the background.
Last night, I was sitting and thinking about when this all started. Just an ordinary day until I got a call from Shannon saying that Jacob said his tummy hurt and she found a lump. A few hours later our lives would change forever when at Children's Hospital a doctor comes into the room and says that the CT showed tumors that were likely neuroblastoma. Neuroblastoma? What is it - Cancer? No No - it couldn't be cancer - Not one my grandkids - Not healthy, happy, sweet little Jacob who loves dinosaurs and robots. Cancer is something that other people's grandkids get - People you just read about, not anyone you know and certainly not that little boy you love so much. Suddenly we found ourselves looking up medical terms and searching treatment options and knowing that life would never be ordinary again.
Fast forward 18 months. You see your daughter going through a hell that nobody deserves. You find yourselves standing countless days by the bedside of a very very sick little boy. You watch helplessly as he recoveries from more major surgeries in one year than most people have in a lifetime. You find yourself almost wishing it was a cancer that had better odds and less lethal treatments - you're willing to trade neuroblastoma for another cancer if it will only give him a better chance with less pain. And you meet people who share your story - a grandmother from New Jersey with a little granddaughter with sarcoma - still fighting bravely. A little girl with leukemia named Penelope who liked to play with Jacob in the playroom and had a baby brother during her treatment. - Grandparent's of 5 year old Dylan who shared Jacob's first room at Sloan in NYC. He had just been diagnosed with ALL leukemia - There was a lot of brave talk about how they were gonna "kick cancer's butt" - Yeah - I said those words too. We are both a little more humble now.
Cherish the ordinary - never ever take ordinary for granted.
If you would like to follow Jacob's Journey you can by visiting his Facebook page at: http://www.facebook.com/JacobHillsJourney?ref=ts
Please visit his blog for many more photos and updates at: http://www.jacobhillsjourney.blogspot.com/