Documentation to remember that I didn’t try and off myself.
7:00AM: Jacob wakes and plays
8:00AM: Jacob asks for food. We tell him he can’t eat until after the procedure
8:15AM: Jacob begins to scream. I WANT FOOD. I’M NOT GOING. Over and over. He screamed this for an entire 30mins. Finally coaxed him to get into his stroller, which then he slams his feet down and wont let us move it. Another 20mins of screaming.
9:15AM: Arrive at the hospital. Jacob screams that he wants food.
9:45AM: They tell us that the person going to give him his cardiogram is not there yet. We tell them to go forward with procedure and do that another day. He needs to eat. Whining but not screaming.
10:15AM: Filps out again. Screaming and throwing things in waiting room with all the families and chidlren. I WANT FOOD. He chants over and over
10:20AM: I lose it on receptionist. How can he wait longer? He needs to eat. For freaking sake he has cancer. Please! Our appointment was for 10:00AM
10:35AM: FINALLY brought back for anethesia, but Jacob won’t go without food. Screams and requires three adults to get him in the room. Then 5 adults to hold him down as he kicks and screams “I want a pretzel” until he goes under. I’m escorted out.
12:30PM: Procedure over and we send Jacob home so Steve and I can meet with doctors.
We learn that Jacob’s bone cancer is still in 19 places. Only down from 24 since diagnosis. That 80% of patients at this point are NED, but we are in the 20% that are not. I become a mess. I ask about Halloween, which I promised Jacob he would be able to do. Nope. Can’t do that. He will have immunotherapy that day and will be sick. I ask about his birthday party that I was attempting to plan for Jacob. Nope. Steve yells that this isn’t important. I become hysterical.
1:00PM: Steve checks his phone and sees that Jacob’s labs are in. We notice that hemoglobin is down. That is a first at this phase of the cycle.
1:30PM: We point out hemoglobin to care team and they say he can’t have surgery tomorrow without a blood transfusion. FUCK! He needs it for his therapy the following week.
2:00PM: Steve tells me to leave as I’m not helping things. I can’t stop crying and screaming. I go home.
2:30PM: Cry in my room for 30mins.
Get email from Benno’s school that at meeting to talk about the death of Eve, head of school, who died from cancer, Benno raised his hand to share his brother has cancer.
3:30PM: Get call from Steve that I need to bring Jacob back to the hospital for blood transfusion. I lose it. How am I going to do that? He’s going to flip and I know it will be an 8-hour event. I Spend an HOUR of Jacob screaming at the top of his lungs that he is not going. We try everything. He is on his bunkbed saying he just wants to rest. “I’M NOT GOING.” When I go up there he kicks and punches. I have no way of getting him down as he just had surgery this morning so can’t pick him up. So I just cry and beg. I threaten to give him a shot. He finally comes down.
1:35PM: 3 escape attempts in our building hallway. He is screaming and crying and trying to run back home. I have to block him.
1:40PM: Finally outside the apt building when a construction tool falls from the sky and almost hits Jacob in the head. I LOSE IT. I fire all of them on the spot and tell them to get the fuck out.
2:10PM: Get to hospital. He seems calm. Grandpa comes with some of the bribes from toy store.
3:00PM: Jacob gets upset that his robot (just bought) is not working. He starts throwing things. Screams. All the nurses try to calm him down he kicks all of them.
3:30PM: Needs to get vitals down to start transfusion. He refuses to even allow a thermometer to touch him. He kicks, screams, and shouts “NO MORE. I’VE HAD ENOUGH. THIS IS NOT FAIR. I HAD SURGERY THIS MORNING AND NOW I’M HERE AGAIN. NO. I HATE YOU MOM.” The nurse tells us that if we don’t get vitals, the blood will be bad and we will have another hour waiting for blood. Jacob refuses. We call in the doctor and they make an exception and start the blood. But now we need to watch him as he could have a reaction and we have no metrics.
4:00PM: I cry and scream in front of Jacob. Mourning our lives. Mourning our reality. Mourning it all. I know I’m supposed to be strong, but I agree with him. It’s unfair. He’s not asking for an extra cookie. He’s not asking for anything, but to not spend his days at the hospital and I know he will be here tomorrow and all next week.
6:00PM: Dr. comes in. I cry and ask questions. I ask how much longer does this need to be Jacob’s life. 2 years. 1 year of this next phase and then the 1 vaccination phase.
Next hours Agenda:
8:00PM: Take Jacob home
5:30AM: Take Jacob to the hospital
6:00AM: Pre op
7:30AM: Surgery for new port