One of these days I know my posts will be brighter, but for now I write the truth and the truth has been dark.
The Past couple Days
Thursday night was awful. We knew Lincoln would have to go under anesthesia for his biopsy Friday morning and couldn't eat past midnight. So we woke him up at 11:45 to try and feed him. He was so mad at being woken up that he only ate half a bowl of cereal and went back to sleep. Two hours later he was up screaming for food. For an hour and a half he begged and cried to eat. Ryan, my parents and I all tried to distract and console him but he was hysterical. Finally I asked my dad to give him a blessing. He blessed him to relax and be calm. Shortly after Lincoln fell asleep on my lap. I thought it was over. An hour later he was up screaming for food again. After another hour of hysterics he feel asleep again, and then woke up again crying at 6:30. I decided we just needed to go to the hospital early to get out of the house and maybe that would calm him down. He cried off and on until they finally put him under at 10 am. He hated the process of accessing his port, although I don't think he could feel it with the numbing cream. He just didn't want people touching him. Everything is so out of his control and so traumatizing. The procedure went fine and then they gave him the chemo. We should have gone home around noon but his hemoglobin was too low so he had a three hour blood transfusion and we left the hospital at 5. After literally no sleep the night before I was exhausted.
Friday night was bad, but not as bad as Thursday. Fragmented sleep for us all, but at least we could feed him. Then last night might have been as bad as Thursday. He was over-tired and felt crummy from the effects of the chemo. He woke up every hour crying hysterically. He would scream "mommy hold you", so I held him. But then he'd hit me in the face and didn't want to be held. He lost his voice he screamed so long and hard. At 4 am after sleeping and waking so many times we gave him a small dose of benadryl to try and deepen his sleep. It worked and he slept until 7:30. He's off the steroids now so I'm holding on to the hope that the nights to come will be better.
Side effects of the Drugs
In general I think he feels pretty bad. On Friday they gave him Vincristine and Doxorubicin. The common side effects include constipation, stomach pain, hair loss, irritation of nerves: numbness and tingling of fingers and toes, muscle weakness, nausea, vomiting and mouth sores. There are less common side effects including jaw pain, seizures, double vision, drooping eyelids, and heart damage. I'm certain he's experiencing the muscles weakness because he's barely walked since then and when he does he's shaky and unsteady. He also definitely has mouth sores. This is part of the problem with his sleeping because he wants to suck on his pacifier but it hurts his mouth. The rest of the common ones I think he's probably feeling but not sure. His hair is starting to fall out.
My Parents Took Sawyer
Friday night my parents took Sawyer and drove to visit my sister Wendy and her family in DC. My dad had gotten a cold and we felt like he shouldn't be around Lincoln, plus it was the plan all along for them to visit her at some point. They took Sawyer with them. It was kind of a last minute decision. While I'm absolutely positive it was the right decision, I really miss him. Ryan and I have our hands so full with Lincoln and it would be so much harder with Sawyer to take care of too. He is having a great time with his cousins. So much more fun than he'd have here with us. They will all come back in about a week.
Giving Elmo Medicine
We have a new medicine for Lincoln's mouth sores we're supposed to give him FOUR times a day. Yesterday we made a little progress. We let Lincoln give the "medicine" (water) through the same syringe to his Elmo doll. He thought that was great and it made him smile. Ryan did his high pitched Elmo voice and Elmo validated to Lincoln that is was kind of yucky but not so bad and over fast. That time Lincoln took the medicine with out a fight.
Tomorrow Ryan goes to work and my parents are gone. Just me and Lincoln. Maybe it will be warm and I can take him on a walk. We should also get the results from his bone marrow biopsy tomorrow. Please let all these treatments be working.