Saturday, November 26, 2011

November 25 & 26, 2011 - Day 55 & 56

5 months, 3 weeks, since diagnosis
65 days away from home

Clinic was uneventful. The counts were fine - she didn't even need a transfusion. Actually, they're very happy with her counts. That's a relief.

We got to see Riker's primary oncologist today who we never get to see. I love her. She always chuckles and tells me I'm a lot like her. She must be the busiest woman I have ever known and she seems to love every minute of it. (Yes, Mina, she's even busier than you!) Despite the fact she literally runs the entire bone marrow transplant program, she always takes the time to listen to me. She addresses all my concerns and never blows me off. Even though Riker's feeling better than she has in weeks, Dr. Lehman still could see that she's "off."

In case it's an ulcer or some damage to her throat from the acid reflux, she prescribed an oral med that might help. She took the time to hold Riker and talk to her. She made me feel like she was genuinely looking at my baby like a baby not just a cancer patient. She even said the fellow should look in Riker's ears. I have been fighting so hard with the team to treat Riker as a whole child. She isn't just a cancer patient. She can still have all the normal "baby things." I am put at ease by a doctor who does all the things I am so familiar with our pediatrician at home doing.

Dr Lehman will also be the doctor making the decisions about Riker's care once we go home. She thinks will be headed home pretty soon and she also thinks we can get a lot of our care close to home, in Scarborough. She's a lot less worried than some of the doctors have been about how well Riker will do. Yea, she definitely makes me feel better overall.

So, today, the family has left for Maine again and it's just Riker and I. I miss them so much but it's also a bit of a relief when they leave. All four of us cramped in a tiny room for 3 days is a lot. Jon is going absolutely nuts by the time he leaves and Valentine's not much better. When they're gone it's quiet here and I need some quiet. Things will be different when we're all home. Being here is a lot like being stuck in a hotel room. Trapping a 3 year old in a hotel room is a disaster waiting to happen and my husband is just as bad.

So, although I already miss them, I was ready for them to head back, too. Hopefully, I'll be going home to them very soon.

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