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.

Week 3 Complete!

Today is Sunday, August 14. I actually had to check the date on my computer because I find that I am in a total time warp here. The time warp becomes really bad when we walk into the hospital. Even though, out of habit, I must check my watch throughout the day, it must not register. I am always amazed when we leave and I figure out the time. Sometimes I am surprised at how late it is, sometimes how early, but either way, I have no feel for the time.

We have crossed the halfway point which is very exciting. I have always felt that the second half of anything goes faster than the first. As of Friday, she completed 15 sessions of radiation. She has 28 total. If she stays on schedule then we should be done by September 30 or August 1. Some things that might through off the schedule is pain or sickness. She has been in some pain over the weekend - her nose has been bleeding, her eyes hurt and her throat hurts. Finally she agreed to take some tylenol. We have stronger stuff if she needs it, but thankfully, she doesn't seem to need it yet.

It is a rainy New York day today. We have seen more of these days since we got here than we see all year in Colorado. As a former New Yorker, I love days like today. It started around midnight and includes thunder and lightening. In order to get to the hospital every day, I wake up at 5 and get her up at 6. On the weekends we still tend to get up early because our bodies are used to it. Today we slept until 7:30 because of the rain. It was amazing to sleep that late.

On Thursday she complained of blurry vision so on Friday we went to see an opthamologist. I really like that they take care of her complaints right away. The doctor checked her out and thinks it is from the chemo and not any damage from the radiation. It was traumatic because they had to put all sorts of drops in her eyes, but it was worth it.

Tomorrow is a short chemo day. They will check her blood and make sure she doesn't need a transfusion and she is not neutropenic. They checked on Friday and everything looked great. My dad and Robin are coming for a visit next weekend and we are beyond excited about that. We spent some time with Aunt Cathy and Uncle Rich this week, which was wonderful. We are hoping to see Andy, Laurie, Ben and Jordana today. We got to speak with Zach yesterday and he is very excited to start school.

Much love to everyone and your support is unbelievable. Thank you, we could not do it with out knowing you are there.

Week 2 complete!

Steve and Zack just left to head back to Colorado so Zack can get settled in before school starts. Steve took the kids to the Bronx Zoo to see the LEGO exhibit. An awesome time was had by all.

We are done with another week of radiation and she has 10 down and 18 left to go. She is doing great and this week should be easier than last week. Last week she had a long day of chemo and a second long day of IV hydration. On Tuesday night she got a low grade fever but even low grade is very serious for kids with cancer. On Wednesday they gave her some IV antibiotics and ran all sorts of blood/urine cultures. By Thursday she was back to her spunky self and Friday we picked up Steve at the airport and took him to the hospital to see everything and meet (almost) everyone.

More later in the week. Lots of love and thank yous.

Week 1 complete

So one week of radiation is complete! It is Sunday night and this weekend might as well have been a vacation to Hawaii. We did not have to go to the hospital all weekend which really was amazing. Meredith did need a shot on Saturday, so we thankfully had Dr. Uncle Andy come over and administer it. I know I could do it if I had to, but thankfully, I didn't have to.

She needed a shot because her Neutrophils are too low and she is more likely to get an infection. If she gets a fever we have to bring her to the hospital for IV antibiotics. Obviously, we are hoping that this won't happen. In the mean time she is doing all her regular kid stuff. Yesterday we laid low, but today we had an awesome day at the beach with all the New York Yachts and some Hochmans. It was a perfect day and I am so thankful for days like these. Seeing my kids playing in the ocean was amazing. I am sorry Steve was not here to enjoy it.

Tomorrow is a big day for us. We start at 7:30 with radiation then 8 hours of chemo. We received an incredible basket from Aunt Laurie and Uncle Andy's friends and she has picked a few goodies to pass the time tomorrow.

Thank you for all the support. We absolutely could not do it without you.