Sooner or later things are going to begin to feel routine, for now each day is full of new information. As much as time stands still as you wait for news and improvement it also races by at the speed of light as we try to process all that is happening and has happened.
Today was filled with lots of information and many new people. We are coming to the end of our time with Dr. Vassilyadi (hope I spelled that right) our neurosurgeon. We have begun to meet the next round of doctors. I had my first consult with Oncology.
Oncology- the study and treatment of cancer. Cancer…another word parents never want to hear.
Joel’s tumor was a Medulloblastoma which is malignant. If there are cancer experts out there reading this please be patient with me as this is all new to me. I will try to explain what we have been told. I met with an Oncologist and a neurooncologist and several other people in oncology. I got to see Joel’s MRI imaging. They showed me the tumor it looked huge. It was 4 centimeters by 4.5 centimeters.
Joel is going to need radiation and chemo. They are waiting on the final pathology report and they will also do a lumbar puncture to rule out cancerous cells in the spinal fluid. If the Lumbar puncture comes back positive or the final pathology report comes back irregular then Joel’s status becomes high risk. We want Joel to fall into the standard classification if he gets labeled high risk then the chemo is much more aggressive.
For standard he will have 6 weeks of radiation Monday -Friday and then he will have 9 months of chemo with 3-5 day hospital stays followed by 3 weeks at home, and then back in for 3-5 days etc. For high risk he would still have 6 weeks of radiation but would have 4 months of intense chemo in Toronto where he would be hospitalized for the entire 4 months.
So please please pray that he will fall into the standard treatment.
Oncology has already begun the ball rolling and over the next while he will see so many different people, speech, hearing, ophthalmologist, neuropsychologist. Tomorrow he is having a GFR test which has something to do with kidneys. I am feeling like we have been tossed into a foreign land and I am desperately trying to learn a new language.
Remember my mixed feelings well that may continue to be a theme in my life. I am further amazed by our incredible God. Yes, I have concerns… when? how? what do we do with our other kids? how do we homeschool? I don’t want to be on this path I don’t want my precious little guy to loose his hair and long eyelashes. I don’t want him to be scared. I don’t want him to throw up, I don’t want to wonder what side effects he might experience. I could go on and on. Yet in all this there is still God. He hasn’t changed. The God of last Thursday before all of this started is the same God as today. And He is good all the time.
If you know me than you know I am a worrier…when I was in school I worried about tests how my hair looked, what those girls thought about me, that boy was looking at me why was he looking at me, what are we going to do this weekend etc. Now I worry about if the kids are getting enough vitamins, their schooling, if they will remember to be polite, did they wash their hands and brush their teeth etc. Here I sit, still in the hospita,l with the news today that my son, my 4 year old little Joel is a cancer patient, and I am not worried. That is a peace that comes only from God. I have questions so many questions I have concerns but I am not carrying fear and that is a rather new feeling.
Psalm 94: 19 When anxiety was great within me, your consolation brought joy to my soul.
Do I want this path for Joel? Absolutely not. Can there still be joy and hope? Absolutely yes!!!
For along time I have felt that there is no randomness that things do happen for a reason. Sometimes they are way beyond our comprehension. Joel has had 3 different roommates so far all so different some serious some not so serious. While we are here we will love those who cross our path and try to share the hope that we have.
I do again greatly covet your prayers for Joel that he would not be classified as high risk but as standard.
The LORD is my light and my salvation; Whom shall I fear? The LORD is the strength of my life; Of whom shall I be afraid?
Shall I fear cancer? No the Lord is my light and salvation, and the strength of my life!!!
Joel had an okay day, he is still not talking much and is very sad (understandable so) but he did walk with assistance to the bathroom each trip he was improving. His meds are slowly being weaned out. He is progressing well. Today my cup is more than half full. We have hope.Pin It