This has been one of the hardest days for me so far. The first few days were a nightmare--the beginning of everything, "De beby has blood on de braien. We are sending to MCV to see pediatrric neurosurgeon"--then--"It's a tumor, ok..."--and after that the emergency surgery and the waiting through the surgery. All that was bad. And hard. And then everything in between, a little something almost every day-- a midnight ventriculostomy, swelling, fevers, high ICPs, needle sticks over and over, seizures, repeated EEGs, CTs, MRIs, leaky head, sewing it up, leaking, sewing it up, get a shunt, a Hickman, surgery, etc., etc.,--
But this day has been, is still, totally heartbreaking. To watch the poison medicine going through the tubes into my baby's small body, knowing that this is the only choice we have, that to be certain the cancer is killed, he must endure this, and to see it happen, to stand there and be able to do nothing but watch was just heartbreaking. Our chemo nurse said that this was a good day. That it was a day his healing starts. And I said, "Then why do I feel so sad?" She told me a lot of parents feel this way on the first chemotherapy day. She said it makes it seem real. Yes. It seemed very real. To a bystander, it was fairly anticlimactic, jsut more fluids from syringes pumped through the tube, but to us, it was something else entirely.
It seems like just some more medicine, crystal clear and in a syringe, looking like so many of the others, but it's not. This is the chemo. This is vincristine and cytoxan. Group A1. The nurse, specially trained just for this, wears double gloves. The bed is draped with protective covering all around, in case the medicines leak out somehow. The vincristine, made from the innocent looking periwinkle flower, is so toxic that if it reaches the skin it will burn and blister where it touches almost immediately. The cytoxan makes the lining of the bladder hemmorhage. He must have a "rescue medicine" called mesna every three hours for 24 hours to prevent this from happening. The mesna coats the lining of the bladder protecting it from the poisonous effects of the drugs that may be this very instant saving his life. He is given fluids all throughout the day to chase the drug out of the system as soon as it does its work. His diaper must be changed every two hours to ensure that cytoxan and vincristine laced urine does not damage his delicate skin. For the next 24 hours we must wear gloves while changing him. If his tears, saliva, or other body fluids touch our skin, we must wash our hands as soon as possible. His body fluids are toxic and if left on our skin will be absorbed into our bodies. These medicines given him today cause hair loss, jaw pain, stomach pain, nausea, and may cause vomiting.
He has been very uncomfortable all day. He was given Tylenol and Zofran, a powerful anti-nausea medicine that the oncologists and the chemo nurses have told me is a "miracle drug", before starting the chemo and has received both of those several times since. The chemo drugs themselves were started at 11:00 a.m. and were finished by noon. The rest of the day has been fluid delivery, mesna every three hours and zofran, Tylenol every four hours or so. He has received morphine a couple times and benedryl to help him sleep. He has whimpered and cried and made "help me" noises nearly every waking minute and has coughed a few times (possibly signaling nausea) but he has not thrown up. It has been wrenchingly painful to watch him in pain, to see him visibly uncomfortable, inconsolable and not know exactly what is hurting, how bad it's hurting, what I can do at all to help him. He can't tell me what hurts or how he feels or what he needs or what might make him feel a little better, if anything. He napped for about 3 hours this afternoon and roughly an hour or so this evening around 8:00. He is sleeping now, it's about 11:30 p.m. A little more than 12 hours since the chemo began. His little body is working so hard to fight cancer and to get the chemo out of his system at the same time. He finally fell asleep at about quarter till eleven and I came in here to post. After I finish, here I will go check on him and I pray he is still sleeping. When he is asleep he seems to be pain free and at peace. Tomorrow, I hope will be better than today. I hope he will feel a little better and then a little better still the next day and the next. Then we will start over on day 8 of the treatment with these same two drugs. And do it all again.
Please continue to pray for him and for us. My heart feels broken tonight. I know Jamie is devastated. How my heart can feel so broken and so full of love at the same time, I don't know. I read a quote once, I can't remember by who, that said something like, "The heart is made to be broken. Once it breaks it can expand to allow ever more beauty inside".
I have nothing left to say tonight, except please keep us in your hearts and minds and continue as my cousin Penni said, "to pray without ceasing".