Days +32 - +38 Good Test Results!

Nathan slowly improves. It is at such a slow pace, it is hard to measure day by day, but his slight improvements can be seen if we look at things week by week. He has been eating more and throwing up less. When he is awake he is more himself and it has been wonderful to "have him back." We have talked more this week than we have in the last few months combined! It is such a relief and so much fun.

Nathan's counts have been incredibly low. We were lucky to leave the hospital on the day we did. They let us go because he was getting close to having high enough counts for us to leave and they expected them to be there by the next day. If they had kept us one more day we would still be in the hospital since Nathan's neutrophil counts have only been slightly over the 500 mark for one day and have mostly been in the 300's. Thursday he was given a growth factor shot and his nuetrophils rocketed to 2000 but the next day they were back down.

This week Nathan had two re-staging tests; a CT scan and a bone marrow biopsy. The biopsy showed only a very small amount of abnormal cells: 0.003%. One pathologist thought that perhaps these might not even be cancer cells but just immature donor cells! The CT scan showed a significant reduction in tumor size, a lot of which may be scarring. The results from both of these tests are very promising and we (and the doctors) are so pleased/relieved. I am thankful for the prayers that are helping this happen. If there is any cancer left the hope is that Nathan's new immune system will take care of it.

The CT scan also showed very small nodules in his lungs, that are probably nothing but will be monitored, and a blood clot. Because of the clot, we have added blood thinning injections to his morning and night meds and consequently he is needing lots of platelets. This is kind of too bad because platelets were one of his cells that were making a great comeback.

There is one more test that we are anticipating - the lumbar puncture. We NEED this to be cancer free. Cancer cells in Nathan's spinal fluid is why we were going to be sent home without a transplant. He has undergone so much radiation and chemo, I believe it is gone, but if it is not, I'm not sure we have many, if any, options left. The cranium/spinal column is a fairly closed system and the new immune system will not cross the blood brain barrier to clean up any remaining cancer cells. It makes me want to ask, "then how did the cancer cross over? How is a blood cancer surviving in spinal fluid?" The more I learn about the way cancer cells work, the more I am convinced that they are not just poor misguided cells, but pure evil. :-) This procedure was going to happen tomorrow.

It will probably still happen this upcoming week, but Nathan is now in the hospital. He has had a fever all week that would get dangerously high in the evening and climbed higher with each consecutive night. Twice he has had chest x-rays and cultures taken but nothing is showing up. The doctors are baffled as to what is happening so right now he has been admitted to be monitored and receive stronger antibiotics. I know he didn't want to go back in the hospital but I am relived. I dreaded night time and taking his temperature. It's been strange not to be his care giver today. I've gotten used to administering meds, taking temperatures, and hooking him up to hydration. I'm not staying with him in the hospital this time and it is awful to leave him at night.

Sometimes, while we are at the clinic, Nathan and I separate for a few minutes. He'll go to triage on the 6th floor and I'll pick up something at the pharmacy on the 5th. When I meet him, I love to see his smile and hear him say how much he missed me and how glad he is that I am back. It is one of my favorite things. I've sometimes wondered if I made the right decision by coming instead of staying home with the kids. Knowing he wants me here takes away some of the regret of missing out on a half of year of my kids' lives.

Emma and Norah came to visit today! Nathan and I looked forward to it like kids getting ready for Christmas. Peter keeps giving Norah love and they are playing so well together. It felt wonderful to take care of Norah doing Mom type things and to spend time playing and dancing with her. She wasn't talking much when we left in June and now she talks constantly. I love listening to everything she says. Emma spent most of the day in the hospital with Nathan playing games and watching Studio C and Korra. Nathan love it! Norah only got to see Nathan for a short time and she was a bit apprehensive at first. I've gotten used to the way Nathan looks, but to her it must be a little disconcerting. She soon wanted to give him a hug and after we left his hospital room she said she was so sad to leave. Since we are only having two kids visit at a time, the hardest part is deciding which ones can come and wishing we can see them all.

This week we moved into an apartment with a kitchen and washer/dryer! Doing the dishes or laundry has never been so much fun and Peter is able to do one-year-old activities - like empty the pots and pans cupboard to crawl inside or have a battle to see if I can fill the dishwasher before he unloads it.

Sometime I'd like to share some of the things I've thought about during this time but it seems like these posts are always too long after just recording what is happening. I need to learn to be more succinct!