That's what we're in right now..."induction phase". It lasts 29 days. Next is "consolidation phase" for 57 days. I'm not allowing myself to think past then. That is enough to think about. The best advice I've received so far is to take it "one day at a time". I've adopted the mentality to take it "one pill at a time" because there are more than one dose of meds a day.
Oh blessid sleep...will I ever get you back? For eleven nights Ryan or I slept next to Lincoln in the hospital. The first night back he went to bed in crib like the old days and I was so revealed. Then, two hours later he was up screaming for us and we ended up on the couch. He hasn't slept in his crib since then. So, he falls asleep on the couch...with one of us next to him or at least in the room. We either move him to his crib only to have him wake up screaming a few hours later or sleep with him on the couch. We try and take turns, but the past two nights he's woken up demanding me and is only consoled when I arrive. I am grateful that I operate as well as I do with little, low quality sleep.
They warned me about the steroids.
In some ways I'm glad I have a drug to blame his behavior on...because it is bad. He is demanding and cranky and cries hysterically when things aren't exactly how he wants them. And he's starving all the time. He's gained 3 pounds in 2 weeks. Only weighing 27 pounds that's a lot. For example, yesterday morning I had snuck back to my bed around 3 am and at 5:15 he woke up screaming "want a grilled cheese sandwich!" I got up and started making it. As soon as I did he was screaming "mommy hold you! (meaning hold me)" So I sat down and held him. Then it was back to the grilled cheese. So I ended up holding him on one hip making a grilled cheese with the other hand. Five bites into it he wanted scrambled eggs. At 5:15 in the morning. So I blame the drugs and the situation and the cancer. I pray I'm not creating a total spoiled brat by catering to his every whim. But how can I not?
I still can't believe they just dropped their lives and rushed across the country at a moments notice. Actually I can. They are amazing like that. What an example of love and sacrifice. My mom quit her job that she loves. Just having them here everything seems so much more bearable. They are constantly telling us how proud they are of Ryan and I and how awesome we are doing. They are my cheerleaders. When Ryan and I grow up I hope we are parents just like them.
He went back to work yesterday. So the world continues to turn I guess. Life goes on. Lincoln's immune system is wiped out right now so obviously hand washing and cleanliness is crucial. Ryan has taken this very seriously. Every night he deep cleans the house. Last night he did it wearing hot pink cleaning gloves. I love him.
When I think about all the people praying for us and Lincoln I am overcome with gratitude. His name is one dozens of temple prayer roles, including the prayer role that the first presidency of our church prays over. A friend who comes to classes I teach at the gym is a physician who travels the world on medical service missions helping people in 3rd world countries. I received an email from him that he'd asked "His holiness, the little boy, The Chosen One" of Bhutan to pray for Lincoln. I myself have never prayed so often and so fervently. Lots of prayers all around the world are being offered up to the Lord. I know he hears them.
Today home care is coming to get a blood draw by doing a finger prick. Lincoln is going to hate it.
I should never make brownies again. He wanted the whole pan and screamed relentlessly for an hour, literally, when I wouldn't let him have them all.
Sawyer sleeps through everything - it's remarkable and another tender mercy.
There is a fine balance between too much mirilax and not enough to keep Lincoln's bowels regular on all these meds and it is a constant issue.
It's ironic that he wants me all the time when I'm the one who causes him the most frustration shoving meds down him. I am his greatest source of comfort and distress.
I feel like a big complainer all the time :( Sometimes it's not all so bad. Things could be a lot worse. Everything is relative and relatively I know I still have things really, really good. It just seems when I sit down to blog all my frustrations spill out.