Wow! It's a week since we first got the news that Jonathan had a mass by his adrenal gland! It's amazing how things have changed including my perception of my son's life. It's amazing how we are (still) worried about the small things in life even though I don't know the outcome of my son's treatment plan. We wonder about trivial things, such as, what will we do about his schooling, would he have to skip a year or even whether we should hold a spot?
The news we got yesterday from the Oncologist was absolutely devastating. The doctor managing Jonathan's care had gotten a chance to review the results from the bone scan and the picture that was painted to us was very frightening. They confirmed that Jonathan has a tumor growing out of his adrenal gland and it goes around / over his kidney and surrounds the main artery from his heart. The tumor is also starting to invade his liver. There are also two small tumors on his right leg and one on his left leg. There are two other areas under suspect but the doctors are not sure. Jonathan is definitely a stage 4 category cancer patient. He has a 40 percent chance of survival - given his age, the stage of the cancer and the possibility that it is Neuroblastoma.
I've always thought that the more I talk about something or journal it the easier it is to handle it. Generally this is true ... but the other piece of information we got was a high level overview of Jonathan's treatment and talking about it gets worse each time. The general treatment for high risk cancer patients such as Jonathan, is that he will get about six months of chemotherapy, surgery to remove the remaining growth, intense radiation to make sure there are no more tumor cells and then stem cell replacement. For the chemotherapy, the treatment is generally every three weeks with Jonathan having to stay in the hospital for about three to four days at a time. For the surgery and maybe the stem cell replacement - he is expected to stay in the hospital for a period of a month and will be in an isolation chamber - since he'll be susceptible to any disease - and simple disease like the cold or flu will easily kill him.
Unfortunately my theory of, "the more I talk about something the more it helps me" does not work in the case where I have to think about his treatment. I am really afraid. I'm afraid I could lose my son. I'm afraid for the long treatment - of not being there for him and what he'll have to go through. I don't know what to do.
The frustrating thing is that I still have to work and go on with life. It's unfortunate that the cost of living is so high in California because it demands that every individual MUST work and for me the option of no pay leave just does not make sense. At the back of my mind I'm thinking that going back out to work might be a good thing - but I don't know how I will manage working and at intermittent stages taking time off while Jonathan is receiving chemotherapy. I'm guessing this is a discussion I'll have to have with my employers when I return. I must say though - that my employers have been very great, very understanding and very accommodating.
I woke up at 6 am on Saturday 22nd January not by choice but because I forgot the alarm on my watch on. It's probably a good thing too because I wanted to talk to a (priest) friend of mine and I had promised him that if I didn't call last night, I would call in the morning. I've been having trouble putting this experience with my son in terms of my religion and I wanted to hear the opinions and advice of someone I trust and someone with authority. I know what other people thing I should or should not be doing - but I wanted verification that what I was doing was right. There are members in my family that think my (or our) actions should be more pronounced, more "fanatically" as I so commonly like to put it and that is not me. My problem was to figure out, "what if I am not as prayerful as they are" or "what if my thoughts are not as positive" does that mean my son is not entitled to a divine experience? Does that mean he will not have a recovery, that he will die if I don't do what the other people do with regards to praying to God as regularly as they do or in a certain (formal) fashion? This was another pressure I did not want to have, but in this situation was creating another type of stress.
Fortunately I had a priest who I grew up with and whom I trust. I wish I had a priest in the US to discuss this with but the one priest who was my spiritual direction has moved and I have not really built a relationship with any others. My phone conversation with my priest friend went extremely well. I was really happy to get a chance to speak with him. I feel more at ease on the way I do things but I'll also motivated to do more.
It's 7:15 am and I've just finished my international long distance call to my friend. I've decided to check e-mail and noticed another friend, who was my best man at my wedding is online. As I prepare to type him an instant message - he send me a message. I give him a call and update him with the news. My friend is a doctor as well and what is good about talking to him is that he helps put things into perspective. Sometimes the perspective includes other information that our doctor has not told us but I'm not sure how to put it all into perspective with regards to Jonathan. For instance, when they say Jonathan has a 40 percent survival rate, they are talking about a 40 percent survival rate during the first five years - since for cancer patients, things are measured in five year periods.
The future is so unknown, so unclear, that I have my moments of complete and utter despair and moments of not complete and not utter despair. I have to start looking forward, of figuring out how to plan for this and making it all 'work'. One thing I know for sure is that we have to look at Gabby reducing her hours completely - so instead of working five days a week - from Tuesday to Saturday, she will only work on Saturdays. That's going to be a financial hit but my plan is to use this weekend to figure things out.
Looking forward ... Jonathan has another long day on Monday. Actually I should probably stop saying a long day because from now on, all his days are going to be long. He has an audiogram test at 8:15 am otherwise known as a pre-chemo baseline audio test. Apparently when chemotherapy is administered ... one of the side effects is that hearing loss occurs and this allows them to establish what was his hearing before his chemo treatment has started.
At 1:10 pm on Monday, Jonathan will start getting prep for his surgery. There are two biopsies that will be done, the first is to take a piece of the tumor, while the second is to take some bone marrow and bone. Jonathan will have to spend at least one night at the hospital and depending on if they have to cut instead of using Laparoscopy ... he could possibly spend more than one night. The plan is to start chemotherapy as early as next Wednesday or Thursday.
Jonathan's pains have also return. He complains about both legs hurting and we have to be more careful when lifting or 'rough housing' with him. He is definitely not the 'rough and tumble' boy that we knew just months before. The plan this weekend is to go Chuck E Cheeses tonight and the aquarium on Sunday. We think this is going to be our last weekend as a somewhat 'normal' family before everything changes.
No comments:
Post a Comment