A couple things were hard to navigate through, but I am prayerfully faith filled for the coming month. Because his counts are still high, and they wanted to increase his dosage to 125%. This is the same dosage that wiped him out last March and put him in the hospital. This was what I was afraid of, and so I was quite apprehensive about agreeing to this. I felt the strength and courage to push back and question this while trying to respectful to the Nurse Practitioner. We came to an agreement to increase his dosage with a count check in two weeks to make sure this dose is not too high, instead of waiting the whole month to check his counts again.
The second issue, was that since we came in a week early this month, they wanted us to come in 5 weeks from now, putting us at December 20. If you do the math, that puts Jack smack dab in the hardest point of steroid week on Christmas day. Nice right? Not ideal to say the least. I asked if we could move this around at all, and our Nurse Practitioner was very hesitant to say yes. He did not think we should move things around too much, and so my heart was beginning to fill with dread as I contemplated this being a major difficulty on such a special time. I asked him to speak with our Sr. Oncologist for a second opinion, as I just felt there had to be something they could do.
Turns out, the Sr. Oncologist was a little less concerned with a week change to his scheudule. So his next appointment is December 13! Praising God for that one. We go in for labs in two weeks.
All in all, the visit was smooth. Jack did get his flu shot, which he did NOT like. Because he cannot get a live virus, he cannot get the inhalant flu inoculation, but has to get a shot (as do all of us). He really hates those needles, but who doesn't. He was a trooper all day. We were gone from 9:30-4, and he just was a snugly sweetie the whole time.
Unfortunately, the steroids are already making him quick to be angry, emotional, hungry and more aggressive just on day 2 of the 7 days that he experiences effects. So the next week is going to be a lot more of that. I feel my need so desperately during these weeks. When he is sobbing and laying on me one minute begging to be carried everywhere (all 40 lbs of him), and then hitting me and yelling at me the next, it is hard for me to not get angry at him or impatient with the constant tears. I have to fight for compassion at some points, which is so sad to admit. But that is the reality. Steroids stink. I am a sinner and respond sinfully. But I know that it is something we have to endure.
Sometimes I want to stop giving him the steroids, or cut a day out of the dosage. Sometimes I wish we could just stop all this right now. Obviously, I know that we must see this to the end, but if I honestly consider where I am in regards to this whole ordeal, I really just want it to be over.
But I know that, not only do we all have to endure it, but we can anticipate grace to have joy and peace in the midst of it. I have to remind myself, that the Lord has a purpose to the process. That each month on steroids, each visit to the hospital, each tear shed and chicken nugget cooked, well they are not without purpose. Even in the mundane, and in the heat of the trial. If the Bible tells me that all things are from the Lord's hand, then I want to embrace even the most difficult with faith. I am grateful I can look back and recall time after time the Lord's help was very real in those wearying moments. And it is in those wearying moments I have to fight the hardest to believe the truths I know in my head. They have to become heart knowledge.
Anyhow, those are the ramblings of a tired momma who only got a couple hours of sleep last night! Thank you for the prayers. We felt them acutely at the hospital. If you see my posts on Facebook, you have seen these iPhone snapshots from yesterday and today already, but I thought I would post them here as well. The last two are of him groaning and waiting for pizza to be finished cooking.