Kayden, my 6 year old, is home sick. For the third day in a row. He has the plague that is going around, with a fever off and on, aches, pains, and a cough that doesn’t allow him to sleep as well as he needs. Chris has had it. Jeff has had it. Spencer has had the cough. Austin and I seem to be the only ones that have managed to escape it. So far.
After a lovely two week break from treatment, Spencer and I were back at Maine Medical bright and early yesterday morning for a Lumbar Puncture to add some chemotherapy to his spinal fluid to keep the cancer cells from playing hide and seek in there. When he woke up from that procedure, we went right over to the clinic to have chemo through his port. He is remarkable about doing that. He does a wonderful job when they access him (which means when they put a needle into the port they have inserted under his skin on the left side of his chest.) In order to prevent him from needing to be accessed again on Friday when we go in, I decided to keep him accessed until that appointment. As great a job as he does when he is getting accessed, any time that I can spare him that particular trauma I will. I numb his skin with numbing cream and I am sure he doesn’t feel it, but who wants to have a 3/4 inch needle coming at them repeatedly? If keeping him accessed this time works, maybe this batch of chemo will not be as difficult on him as it could be. If this works until Friday, then I am hoping to keep him accessed through the weekend because we have treatment on Monday. In February, he has a batch of treatments that are four days in a row. If we don’t need to keep sticking needles into him for that, I will be a happy mumma. Trial and error, right?
What this means for us, daily, is that I am back to flushing his line to keep it clear. Once a day, I push some saline and some Heprin (an anticoagulant) through the tube that is attached to the needle that is in his port. It keeps the line clear and unclogged. Spencer is not at all bothered by having his line flushed, though. He actually helps me push the fluids in with the syringe. He loves to do that.
The port, a catheter, is connected (under his skin) to a line of tubing that runs directly into his heart. All the chemo goes into the heart and any blood draws he has comes right from it. This is a better option for a busy three year old than the PICC line he used to have, that ran from his right arm, through the veins and into his heart. Unless we keep Spencer accessed, there are no tubes to worry about and clean. The PICC line had a tube coming right out of his arm that had to be flushed daily and was dangly and easier to infect. With the port, he can have baths and swim and whatever three year old boys do (not so much when he is accessed, but in general) and with the PICC line, which was less sturdy, he would have had it replaced monthly. The port, unless something goes wrong, will be the same one that he will have until the end of his treatment in three years.
Let me just say that in the last few months, I have learned more about blood counts, hospitals, nursing, needles, medical equipment, blood draws, surgeries, cancers, fevers, doctors, protocols, clinics, IVs and treatments than I have EVER wanted to know. Who wants to know that 4,000 kids a year are diagnosed with Leukemia. 4,000. When the doctor told us that, I said “How many?” he repeated the number and then added “I know that sounds like a lot…”
“No.” I cut him off. “It doesn’t.” I KNOW that out of the whole population of this country, 4,000 is not a lot of people. Not even close.
But we are one of “them”. A family that adds to the statistics that parents get when their child is diagnosed, now. We are part of the “them” that shocks people in the scarcity of the numbers. We are past the point where we are new to this situation. Not yet Cancer Vets, but not green, either. We are one of the families that, for no reason other than “bad luck” (meaning that this type of cancer is not due to a genetic predisposition, or environment, or choices or anything.) are drastically changed. There is NOTHING we could have possibly done to prevent this…or even see it coming. But we are lucky.
The cure rate (which means 5 years cancer free) with Pre B Cell Acute Lymphoblastic Leukemia is over 90%. Those are great odds. When they said “Cancer” I thought my baby was going to die. Period. By the end of that conversation, I did not. I was still terrified. I was still mad. I was still bargaining. “Give it to me. Please. Give it to me instead.” But I had hope.
I have been blessed. Because of Spencer’s journey (that is what they call it…a journey) I have come to know several families with cancer in one form or another. So many special souls that deal with worse than we do every day. I have had my eyes opened to the stories of others, seen the lives that have been touched. Seen the hope in all the eyes. I am fortunate to know these people that I never would have met otherwise.
I have seen the other side of cancer. Two amazing people, fighters, that I know passed away in 2012 because of Cancer. Wonderful, vibrant people that, had I known them my whole life and one hundred years beyond, I would not have known long enough. One of those people was two years old. I learned from him more than he will ever know. The other was 35, a dear friend and my neighbor. She knew I loved her…but that is never enough, right? I miss them every day.
I have to go, now, friends. But I will be back to add more of my thoughts. This is important to me. And maybe to some of you, too.