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12/23/16 I should be sleeping, but my boy is on an IV drip overnight and I keep expecting him to wake up and need help getting to the potty.
It's been about 2-3 weeks for us since diagnosis. Lazlo had a lump in his scrotum. We thought it looked weird, waited the weekend and took him to the pediatrician on Monday. She was very concerned. Sent us to ultrasound, then to the lab for blood work (that IV was miserable), and we were in the specialists office the next day. The specialist turned out to be a surgeon and he was pretty serious about getting this mass out right away. He sent us to the cancer center (which I was SURE we weren't going to need and SURE we'd never be back at). They insisted we check into the hospital because CT scans needed to be done before the surgery. The CT scans showed additional involvement of the lymph nodes and spots on his lungs. I still held out hope that this was going to be a fluke. Surgery happened and we finally got out of there a day later. We went home still hoping for good news. I think it was December 11, that we first heard the word Cancer. By the next day it had a name Rhabdomyosarcoma.
The next step was a bone marrow scan and spinal tap, they were followed by a week of headaches, very unusual for my strong and healthy boy! Finally, today we went back for surgery to put in his port and his first chemo. More results: Stage 4, Group 4, Embryonal type. We have 45 weeks of treatment. The doctors say this gives us an 80% chance that the cancer will be gone at week 45.
I am the natural mom who, while not perfect, did many things to avoid this! Chemo was one of my worst fears, and yes I fear the treatment just as much as the disease. Now I am completely at the mercy of the darn medical world where it's okay that they give you this drug with horrible side effects because they have 4 more drugs to counteract all the side effects! Oh, and more drugs to deal with THOSE side effects! I glanced briefly at the stages of grief and I'm definitely having trouble with acceptance. Absolutely angry as well!
Today we left the house at 5am to be there for surgery. Finally got through the end of the chemo and got out of there around 5pm. I leaned on scripture writing (and singing praise songs) to get me through, all of Psalm 139, plus many other verses that friends and family posted or messaged through out the day. I also teared up and left the room several times. My amazing husband did the hardest parts and took care of everything when I had to just walk out and cry.
We are certainly receiving lots of support, and I CAN see God's mercies and blessings in the midst of the bad. Sweet friends, my MOPS group, people from the past reaching out, beautiful sunrises, our family, our Whitegate Community, the church staff and Elders have been to the house to pray over us twice. I am immensely grateful for all the meals, money, gift cards, prayers, thoughts, offers to help.... My husband has been an amazing rock, he is so strong! If any of his friends read this, he could use a running buddy and someone to lift (big!) weights with!
I have one more hope; to find everything natural that I can to support his body through the process and ward off as many of the horrible side effects as possible! The doctors tell us his tendons will weaken to the point that he'll likely require physical therapy and leg braces, all hair will fall out (likely after the first treatment), he will be incredibly susceptible to any cold/flu/virus, a fever will be an emergency, and he will be weakened to the point that he will require blood transfusions. Tomorrow I am meeting with a naturopath, I'm learning about Ozone therapy (which could help keep blood counts up), Vitamin C infusions (that can help his immune system function), and supplements! There are some resources at beatcancer.org that I am looking through as well, and he'll be seeing a chiropractor weekly.
I don't have time to make this beautiful and perfect, just trying to keep all our friends and loved ones informed. It is what it is.