Last update for the night, they have started his second round of steroids tonight, and upped the dosage to 1300mg, which is crazy to me (he was on 120mg a day here at home). They are trying to hit his system hard, so it will stop working against him, I sure hope it works.
They will run some bloodwork at 4AM, Brian says; and that will tell us what the plan is for the rest of the day. If they are higher than what earlier todays was (Hemoglobin 6.8 and Platelets 96K), then they will give him one more round of IVIG (takes about 5 hrs), draw bloodwork one more time to check counts, give him his third dose of Vincristine, and discharge him to come home (then do a CBC either Friday or Monday again, and go from there); which would put them at home by 4-5PM; which is fine, I will have Christmas dinner done and ready for them, so we can enjoy it as a family, then Jordan can open up his gifts. If counts are still low, then more than likely they will do two more units of blood, IVIG, and then Vincristine. Which means they would not be coming home for Christmas at all, because doing two units of blood takes 4 hrs, and then they would have to start the IVIG, which takes another 5 hrs. So if they were to start at 7AM as they said they wanted to, they wouldn't be done until 5-6PM, then they would have to draw blood to recheck his counts, and it would be after 6PM before they got discharged, depending on the blood work results from that, and that would put them home around 9:30PM. Sigh.
Having a real hard time, I have no family here (been estranged from my immediate family for over 5 years-other than my brother, who I see once every few months). Its Christmas, so the close friends that I do have, are with their families as they should be. No support system really, Brian is my support system..my best friend, and he is with Jordan (again, as he should be). So I feel completely alone, and have to keep myself from breaking down in front of my kids (although I did have a good cry tonight once they went to bed).
It was really tough putting on a smile this evening, and going through the motions with Conner (our 9 year old who still believes in Santa). Baking cookies, making reindeer food, watching Christmas movies (Frosty and Rudolph), putting out the milk & cookies for Santa, leaving out the reindeer food in the yard for Santa's reindeers.
He went to bed around 9PM, I had Brittany help me bring down his big Santa gift (air hockey table); she went to bed shortly after 10PM (not sure if she is asleep yet-its past 11PM now). And I am just sitting here...alone, in my house, complete silence around, trying to enjoy a glass of wine. I still have to set up the rest of Santa for the kids (even Jordan, although he isn't here); and I am struggling to find the willpower to go upstairs, get everything down here, and put that up for my kids that are here.
If this is a test from God, I sure hope I am passing with flying colors, because I definitely would like to be finished with this test now, and go back to our normal routine life. As a mother, you want to do everything in your power to make your child feel better, and I feel absolutely helpless that I can't do anything for him. I only hope and pray that when he does go into remission, that this makes all of us a stronger family, especially him; because its been very overwhelming and frustrating for not only us, but him also. I am thankful, however, that this has not strained my marriage at all, it has only brought Brian and I closer together (if that is even possible, because we are very close already). So for that, I am grateful.....
Merry Christmas everyone, I do hope you all have a wonderful time with your family, and your children. Please keep your thoughts and prayers with my family as we continue this journey with Jordan. <3
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