Category: Serenity

Serenity’s appointment last week went well. She had lost a bit of weight, but not as much as I’d thought (0.4 lbs). Her ANC was 0.9 and they like it to be 1.0 so she did not get her last dose of IV methotrexate. She still got IV Vincristine, but didn’t need any platelets or whole blood so it was a fairly quick appointment. We were one of the only people in clinic so she got her choice of toys and we were seen quickly. It made me wish we could always come on Fridays!

This week she gets a break from chemo but we do go up on Thursday for an echocardiogram. The new chemotherapy that she will be getting in the next phase can cause heart damage so they like to have a baseline so that they can monitor for any changes. She will probably have to be sedated for the test so we are going up really early on Thursday. We will have to leave around 5:30 – 6:00 a.m. to be there by 7:00.

Other than that all is well.

I spent some time this morning reading all my old posts about Serenity’s leukemia. It made me a little sad. I miss the sweet happy child she used to be. I miss her cute long thick hair. But I was reminded how far we have come since those first days. It’s just like I’d been told; life goes on and leukemia just becomes a part of it.

I realized that I haven’t blogged for awhile and I feel a little guilty. There is a lot to say, but I haven’t had much free time.

This past weekend we went to a family camp put on by Candlelighters. It was just amazing. We spent the night in a cabin near Snow College and spent the entire time interacting with other families touched by childhood cancer. We played family bingo, hiked, did crafts, made a family flag, competed in family olympics, ate good food and watched movies. It was everything I had hoped for. It was so nice for the other kids to be around new friends and everyone had fun and didn’t think about cancer, all the while being with people who know exactly what it is like to think about cancer all the time. Most of the other children were cured and off treatment and it was a wonderful thing to see them. In fact with a few of the families I wasn’t sure which child was the “cancer kid”. We came home with extra food, beautiful quilts for each child, matching T-shirts, and knitted caps. It was really, really neat.

I have been trying for a few days to get a good picture of Serenity that depicts how sick she looks to me. She has done surprisingly well since our last clinic visit, considering how much chemo she is getting. But she looks so very sick to me. I had her in the grocery store the other day and the checker said to me, “She either just woke up or she is getting sick.” I just smiled; it is easier sometimes not to explain.

She feels so thin to me. I am anxious to get her weighed at the clinic on Friday because I’ll be shocked if she hasn’t lost weight. She isn’t eating very much, but she is making up for it by nursing. She is nursing almost around the clock. I am so tired, and I feel like I’m not giving the twins enough of my attention.

Serenity’s hair is growing back in and she reminds me of a fuzzy little bird. She touches her head a lot and tells me, “My hair!” as if she is proud to have it. I expect it will fall out during this next phase of treatment, which is supposed to be the most intense. I am a bit concerned that she will be upset by it.

We have our visit on Friday at the clinic and if all goes well, she won’t go back until the end of September.

Serenity clowning around with her new dress and sunglasses, a gift from our awesome doctor.

What a goof.

The day she broke her wrist and got her temporary cast.

She loves this little toy.

I mean really loves it.

She didn’t seem to mind her cast too much.

At the clinic getting intravenous chemotherapy.

I haven’t blogged as steadily as I should and I am sorry for that. For some reason it is hard to make time for it lately. Here’s a quick update:

Serenity went to the clinic on Thursday. Once again her numbers looked good and so they increased her methotrexate to 200 (milligrams squared I think). In 10 days she is due to go back and have another increase and a lumbar puncture. I asked the NP whether it’s common for kids to make it all the way to 300 mg without crashing. He said it happens, but most crash in the 200 to 250 range. So we will see. I keep thinking she is a little warm but when I take her temp she’s ok.

She has had a little rash on the inside of her thigh. I think I mentioned it at our last visit although I don’t remember. This time when I pointed it out the oncologist said it looked like ringworm, and prescribed a cream for it. The funny thing is it wasn’t circular that morning but had changed by the time we got to the clinic.

Serenity is also due for a dental checkup next week and so her doctor prescribed her an antibiotic as a precautionary measure.

She got her cast off! She wasn’t sure she wanted to say goodbye to it and she screamed the whole time it was being cut and removed but then she settled down. Her arm is raw and irritated from the cast but she is pleased to have the use of both hands.

I’ve done pretty well at staying off caffeine. My goal was 7 days (and then we’d see…) Yesterday I remarked that Phil that it was surprisingly easy and I hadn’t even had a headache. Also I seemed to crave sweets much less than before. Today was day 6 and I woke in the night with an awful headache. Advil through the night and all day didn’t touch it and I had to work on my lesson. I decided to get a Pepsi but it didn’t help as I had hoped, so I didn’t finish it. But man, it tasted good. I had kind of hoped and expected that it wouldn’t.

Week 3 of my new eating plan has me giving up sugar for 7 days. I feel like I can do it, since the cravings have decreased, but I’m not sure whether I’m going to. I have tried so many times and failed, I just don’t know if I want to try again. I’m still thinking about it.