This has been a couple of days for us. Yesterday was her long day of chemo. That is in addition to radiation. Also, every Monday she has her port "accessed".

In short, there is a port surgically implanted in her. This is a small disc with a bump on it. During this radiation period there is a tube (or tubey as we call it here) attached to the port all week. A needle (it looks like a super long thumb tack) is directly in the port and the needle is connected to the the tube. Meredith calls the needle a butterfly because in Denver it looks like a butterfly. Here it is flat so sometimes she calls it a ladybug. Which kind of stinks because that is one of my nicknames for her. This is all covered with gauze wrap so you can't actually see the needle, just the tube sticking out. The tube goes down to her waist. When she is accessed, she can't get it wet, so no beach, pool, shower. We have devised a system so she can take a quick bath at night. She gets quite dirty at the hospital, so some kind of washing is necessary. She has to be accessed all week because she is sedated for radiation each day. They put propyfol in her tube, she goes to sleep, they put a mask on her, she has radiation, wakes up and eats. From there we usually go to a doctor appointment or we go home. On Mondays she has to have chemo. Accessing the port is usually pretty traumatic. So, put that all together and Mondays are super hard.

Yesterday, after the port access, she had radiation, then we come to the Pediatric Day Hospital and get a little room so she can have her chemo. We spend the whole day here and yesterday Jennie, my bestest friend came to keep us company. It was wonderful to have her here. Both Meredith and I loved her company. We got home and had a nice dinner, compliments of Bette and Meredith went to sleep. That is where the hard part started. Most of the chemo day is actually hydration, and therefore she had to go to the bathroom all night. In fact, in NY, they send us home with a "backpack" full of hydration, so she is hooked up overnight. They are trying to move the chemo through her body, which is great, but it makes using the bathroom difficult. She woke up several times, with an extremely full, painful bladder. Also, because the radiation, she has sores in her mouth and nose. Her nose is bleeding a lot and it is painful, so that keeps her up quite a bit. Needless to say neither of us slept very much last night. This morning, we woke up, came back to the hospital, had radiation and now we are back in the Day Hospital for more hydration. It is pretty mellow, just a lot of trips to the bathroom.

Because of the sores, trying to find food for her to eat has been quite a challenge. It has to fall in three three categories: it can't hurt her tongue, it can't make her nauseous and she must have an appetite.

Tomorrow should be more of a normal day - radiation and a doctor appointment, and then we get to come home. Our next long chemo day should be in Colorado, fingers crossed.

Luckily for us, we had a very nice weekend, which made yesterday a little more tolerable. My dad and Robin came in for a visit and we stayed in NYC with them. We walked for miles and had a great time finding food for all our food restrictions. It truly was a nice vacation from the day to day monotony of this experience.

We can see the end of this part. If all goes according to schedule, we should be done by Wednesday. We cannot wait to go home and see Zack, Steve and Stanley. I can't think about it too much.