Wow! This is the 2nd week we are home as a family and it is nice! The weekend was rather interesting. On Saturday night we took a drive around the area to look at decorations for Halloween. For some reason being at home was the worse thing to do - and going out was much better. For the entire drive - the kids were playing continuously. Jonathan and Arielle decided to play the "knock, knock, who's there" game and they would laugh and laugh and laugh. I think they were being a bit too noisy for Gabby but since I am not with the kids 24 / 7 - it was easier for me to tune them out. It's amazing to see how close Arielle and Jonathan are - but it's also frightening because if Jonathan doesn't recover from this disease it will be a huge loss for Arielle and I'm not sure how we will handle it. I know this will be a big issue for her because whenever Arielle finds out that Jonathan has to go to the hospital, for example to do a test, she gets upset and doesn't want her brother to go.
On Saturday night I decided I really didn't want to be home on Sunday - so we called up our uncle and aunt and 'invited ourselves' over : ). I don't think they minded - but I know it's not a good practice : ) and I know my uncle is reading this too (lol). My uncle was kidding with me by saying that we now had too much free time and didn't know what to do with it : ). Maybe that is true - but I think being at home is a bit depressing. We have all the cleaning up and other chores to worry about - plus - when I'm home I'm either thinking about work, or going on the computer and not really spending time with the kids. When we go out - then it becomes more of a family event. So we ended up spending the entire day out on Sunday. Arielle went to Sunday school - she had missed the last three sessions - and the coordinator was not pleased - saying that there are other people who are on the waiting list, etc., but I told her about our situation and she was cool. Initially, Arielle didn't want to go, but afterwards she was so happy that I really think Sunday school is a good fit for her. I cannot wait until she starts pre-K next school year as I know she'll do very good.
Onto a different topic. Jonathan had a bone marrow aspirate and biopsy yesterday. This test takes a sample of his bone and some bone marrow to measure for tumor cells. Because they only take two samples - it's a hit and miss because sometimes the sample area could be free of tumor cells when in actual fact he can still have tumor cells. He also had a bone scan yesterday - couple with his CAT scan about two weeks back - makes it three out of his four tests required for a complete reevaluation of his cancer. The fourth and final test is the MIBG test and it's what I consider the most important one - because it was this test that showed that he has some update (cancer cells) by his left leg. I'm hoping that his MIGB test gets scheduled towards the end of the week or early next week which would mean we'll have our consult towards the end of next week.
It's not a consult I'm eagerly looking forward to - because I don't know what I'll do if I find out that he still has tumor cells. Gabby thinks that if I find out that he still has tumor cells that I'll want to do comfort care - but I'm not so sure I'll want to do comfort care as yet. With Jonathan being home for the last week and a half - it's been hard for me to come to grips with the possibility of losing my son. What makes it worst is that he has reverted back to be a daddy's boy : ) and it makes our bond stronger. My take is that I'll wait until I hear the news and then think about it for a while and then make a decision. The disappointing thing was that his auditory results came back last week and Jonathan's hearing loss got worse after the stem cell transplant. He has lost a lot of the ability to hear in the higher frequency ranges so some letters like S and such he cannot hear too well. They have recommended that Jonathan gets hearing aids - and although we knew about the possibility - I guess having it confirmed was like being hit with a brick.
I warned Gabby this time - that the way I react to things is different now than in the beginning of Jonathan's treatment. I'm not as reactive as I used to be. Now, I listen, digest, research (if necessary) and then decide on the course of action. The difference between how I behave now and then was that my digesting period is much longer : ) - it's been five days and I haven't even called the insurance company to find out whether they will cover the cost of the hearing aids. I've heard that they don't usually and that hearing aids are expensive - about 3k for each side!
So - what will I do when I hear the news? Good question! Amazing the idea is that I should go to church just came into my head - I clearly didn't think about that before - but what I do know will happen is that we will be taking a holiday in Trinidad. So here is the plan - if Jonathan is NOT free of disease - we WILL be making a trip to Trinidad. We figure it will be his last Christmas and his quality of life is worth the risk vs the suffering he will have to go through. Don't ask me how we'll get to Trinidad - because I'm not seeing any sales to Trinidad on AA website - but I figure all will work out. If Jonathan is declared free of disease or no evidence of disease (NED) then we will NOT be flying to Trinidad because it will be an unnecessary risk. In that case - we were thinking of taking a holiday in mid-February. Originally we were thinking that he could do his Make a Wish trip in February - but I think that will be too soon - so we may probably take a vacation in southern California - where we could drive instead of going in a plane - and enjoy ourselves at one of the theme parks.
Other than that - work continues to be interesting. There are new developments - not good ones - but I'm hoping it works out for the better over the next couple of months. I'm trying to figure out how to slow down time so we can try and enjoy the Christmas season. Someone pointed out to me that by taking paid family leave for one day a week - I was taking a 20 percent pay-cut - but I refuse to think about it. My main thoughts are - what are we going to do this weekend!!!
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