This photo breaks my heart. My heart breaks so often. Meredith told me her dog is not feeling well. As you might imagine, Meredith has not been feeling well. I haven't written in a little while, so I will back up and catch up and then tell you more about her dog.
On Saturday, September 3rd, we left New York and traveled home. Meredith wore a mask for some of the trip. Thankfully, it was uneventful and we both were able to sleep. We were warmly welcomed by Steve, Zach, my mom and her friend. It was joyous and a little overwhelming for both of us. We had a nice trip home and when we opened the door, the house was busting with balloons. Steve and Zach had blown up a million balloons and it was a wonderful way to come home. Stan was also excited to see us. We spent the whole weekend in the house, doing laundry, catching up. All weekend long I would hear Meredith say: I forgot about this, or I really missed this. It is so great to be home.
On Tuesday September 5 we went to her first day kindergarten. The other kids had started about two weeks earlier. She had a short day of chemo on Wednesday, September 6. She tolerated that well, but as usual hated the butterfly (port access). She went to school for half days on Thursday and Friday. She seems to like school, but it is definitely hard for her. We walk Zach to class first and walking down a hallway full of first, second and third graders is hard for anyone, but for us, it is heartbreaking.
On Monday, September 12, she had another big day of chemo. It is definitely taking it's toll on her and we didn't even make it to the playroom this visit. We did a lot of television/movie watching. We also went to the eye doctor so they can check out her drooping eyelids. The doctors think it is from vincristine toxicity. Vincristine is the main chemo drug they give her and it is not unusual to have toxicity. The eyelid drooping seems to be an unusual side effect. The left eye, which got more radiation, is dropping a bit worse than the right eye.
On Tuesday, after her big chemo, she napped in the morning, which is pretty unusual for her, we went to the hospital for her gcsf shot. This shot is also called nuelasta or a g-shot in NY. This is a shot that she gets about 24 hours the big chemo day or any time she is needing more white blood cells. This is my understanding on how it all works.
Each kind of cancer has its own recipe. These recipes include options for surgery, radiation, chemotherapy. The type of chemo varies, the duration of the chemo varies. The radiation amount varies as well depending on the particular recipe. So, for instance, Meredith has a recipe of the following items: 43 weeks of chemo (of which we are on week 14), 28 days of radiation (which Meredith has just completed). She also had surgery to remove her tumor. A kiddo with leukemia might have 2 months of intense chemo and spinal taps. Other kids might not have any radiation, especially if their affected area has been amputated. Some kids have radiation 2 times a day for 14 days. Those poor kids can't eat until after 1 or 2 in the afternoon, maybe later. Some kids have bone marrow transplants every day. Some kids have to get shots everyday for a month, usually from their parents.
After her gcsf shot, we picked up Zack, went to chiropractor, karate and home. At all those places she did great. By the time we got home, she did not look good though. She fell right asleep on the couch and had a 102 fever which is a big deal in kids with cancer. We spent the night in the hospital. She was hydrated all night and most of the day. She slept most of the morning and finally started eating and drinking around lunchtime. We left and she has been doing really well since then. She even went to school on Friday, i picked her up right after lunch. Lunch and recess are a little overwhelming for her. There are at least 100 kids around. She is not used to that many kids. A lot of those kids are looking at her. She has at least two adorable friends.
Zach has been taking karate since he was 4.5. He is a blue belt right now and slowly but surely he will earn his black belt. He likes to dress like a ninja, which is any outfit that he can wear a black shirt and black pants. Black underwear makes it even better. Meredith likes to dress like a ninja too. On Friday, her only day of school that week, she dressed like a ninja.
We had a long week last week and this was even longer. My fingers are crossed that this week will be easier. This is the first time in 3 months that she will not have to have chemo. The way our recipe works, she has no chemo for the next two weeks. She has a couple of other breaks like this. Our recipe has potential vincristine toxicity break built in. Which is good, because. She is starting to experience this.
Which brings us to today. She has been doing a lot of medical play, as it is called. Both Steve and i have had our imaginary "ports" accessed. Most of her dolls have had to get shots, blood pressure take and medicine.. This time, her dog was nauseous and was preparing to throw up. Last night that dog slept on her floor all tucked in, with a baby blanket, just like Meredith. I didn't know a heart could be broken so many times. My poor baby.
I can't say it often enough, but thank you all so much. All the support we are receiving is so very appreciated. The cards, the prayers, calls, texts, meals, small smiles, gentle complements to Meredith, love, hugs, calls. I am constantly overwhelmed by the love around us, I can never express it properly. But thank you. I hope to never have to make it up to you, but I will, or to someone else. Over and over, I am graced with acts of kindness great and small.
