I just figured out that Nathan I spend only 3 nights a week in the same place. Two of those nights are after one of us has pulled an all night hospital shift. To say that cancer is tough on marriage is an understatement. We pass like ships in the night and when we are together we are exhuasted physically and emotionally. Tonight I ask for prayer for Nathan and I. We need grace for this new life and the battle we find ourselves in.
Phoebe seems to be doing well so far with this round of chemo. We are just coming in to the scary part of her chemo cycle where all of her blood counts drop and her neutrophils get squashed so the next few days we will really be watching her closely. She is doing well with her new bi-pap machine at night. This helps expand her lungs beyond her limited ability and gives her a break from having to work so hard to breathe. We have also noticed a small improvement in her muscle strength since she has been on the machine, presumably because she is conserving her energy by not exerting herself so much to breathe. She seems happy and playful and is doing great with all of her therapies. Her sodium levels have been high and she has had some vomiting, but on the whole, she look good. She spent an hour and a half in the playroom today and has been asking to use the “big-girl-potty” and those two things tell me that her energy level is great!
Today, as part of her chemotherapy she was scheduled to receive a drug called Vincristine. Vincristine takes a big toll on muscle strength and since her respiratory status is so weak and her diaphragm muscles so puny right now, we held off. Neurology is going to assess her to see if we can pinpoint the origin of her muscle weakness. It is typical for chemo patients to be weak, not typical to lose their entire ability to walk and breathe well. In other words, the Vincristine does not usually cause this degree of atrophy and her respiratory status in particular is very concerning. Please pray that we would be able to get to the bottom of this. We do not want to deviate from her chemo protocol, but we do not want to give her a drug that will completely knock out her ability to breathe on her own lest we find ourselves back in ICU with Phoebe on a ventilator again.
The boys are doing well. Today it was Averic’s turn to go to the hospital with me and he climbed in bed with Phoebe and played games and watched Veggie-Tales with her all morning. It was sweet to watch. I think it’s less overwhelming for her to have only one brother there at a time and it also allows them to have some special one-on-one time together. Nathan is with Phoebe tonight and I am with the boys. The weather has been beautiful lately and it makes me want to go on vacation. It has been difficult to have a very small radius of operation…I get nervous thinking about being far away from the hospital and yet I wish we could all just go away somewhere together and have fun. Fun is not the same now because life has an under-current of constant concern that dogs me constantly. The only time I am free from that is when I sleep, and even then my dreams are often cancer ridden. This is another area I need prayer for.
We trust that we will see His goodness in the land of the living, we see it all the time, we do not doubt Him, we just grow weary in this stretch and need a new way to navigate this treacherous landscape.
Thank you all for coming in to the trenches with us,