Author: Adria

Serenity has done well this week after the IV vincristine and methotrexate. She has asked for Zofran a few times but hasn’t thrown up. She does have a couple of mouth sores, but I’m not positive if they are from the chemo. She isn’t eating as much as I’d like. She nurses a lot through the day & night so I know she is staying hydrated. She will often eat without complaint but just as often she will decline to eat anything. She doesn’t act like her mouth hurts, and the sores seem to go away quickly. She has only had 3 so far, but I will mention it at our next visit.

Her eyelashes have almost completely fallen out and her eyebrows have thinned considerably. It surprises me, because she still has stubble on her head and I had thought that lashes and brows fell out much later than the hair on her head. She doesn’t complain of leg pain anymore, although she still moves very slowly up and down stairs. She doesn’t seem to mind her cast at all; it’s become part of her. It was cutting into her hand and arm a little bit (where the edges are rough) and causes several sores and places where the skin rubbed off. We put Moleskin on the edges of her cast and that seems to help.

Our next clinic visit is on Monday and they will increase her dose of chemotherapy. Phil will be out of town, so I am really hoping that she does ok so that our household will run smoothly in his absence. I’m more than a little anxious about having him gone for 3 days.

Serenity started Interim Maintenance this week. The hospital has reverted to an older protocol which has us going in every 10 days for intravenous vincristine and methotrexate. Although we had originally been told that most kids don’t get nausea with vincristine, it is one of the medications that Serenity was taking during Induction and she was quite sick. So we are not sure what to expect during this phase, as far as side effects. The good news is that she won’t have to take any oral meds at home, except as needed to manage side effects. This is a huge relief. I would much rather drive up to Primary Children’s 3-4 times a month for IV meds than have to try and force her to take them each day at home.

During this phase her chemo dose will be increased at every visit. At some point her blood counts will drop, and then the chemotherapy dosage will be dropped a little bit too. They want to give her the maximum dosage they can without causing her hematocrit, platelets, and ANC to drop too much. What this means is that we’re expecting her numbers to drop, we just don’t know when. I know this isn’t a huge thing, but it’s kind of scary to me. In the beginning her numbers were frequently low and she had to have many blood transfusions, and we couldn’t take her out in public places. With school starting up I worry about what she will be exposed to through the older kids.

Yesterday’s blood drive was a success. The people at Twelve Horses are awesome. Not only did they allow us use of their office space, but they provided food, drinks, and a complete Rock Band set up.

We had quite a few people show up and so there was a steady stream of donors. It was fun to hang out and visit and even Serenity had a good time. I’d been afraid she would get bored being there for 5 hours but she really enjoyed it.

THANK YOU to everyone who blogged, twittered, and spread the word. We got 23 units of blood, which ARUP says can save up to 69 lives. I was very impressed with the number of first time donors that showed up, and people who’d had a bad experience donating in the past, and people who saw our signs and walked in off the street. There was even one wonderful girl who let them stick both arms trying to get a good vein.

We plan to do another one in October, in multiple locations. You might not think donating blood could be “fun” but it really was.

Serenity got a purple cast today.

We took her in Friday but her wrist was too swollen to cast. We didn’t expect that. It wasn’t swollen on Wednesday when it happened and we hadn’t unwrapped the temporary cast that Insta-Care had given her. According to our pediatrician it can take 3-4 days for it to swell.

So this morning we took her in and she loves that it’s so colorful.

The twins also had physicals this morning. They are healthy and growing well. We asked for the lab to run a blood panel on both of them, just in case. We haven’t got the results back but I think if something was amiss we’d have heard.

Taking the 3 kiddos (3 and under) to the doctor at once was an adventure. Phil and I both were there and spent our time chasing babies and answering questions and trying to distract little ones and rolling our eyes at how hard it is to keep 3 little ones contained in the same room when they’re tired of the toys and they don’t want to be there.

On Wednesday is our blood drive in Serenity’s honor, and on Thursday we go back to the oncology clinic to start interim maintenance. Other than that not a lot is going on. Our oldest is watching 4 kids this week so they came over here today and our kids loved having playmates. When they were all in the van I thought to myself, “This is what it would be like to have 10 kids.” (Two of ours are staying with family members for the summer.) By the end of the day I was feeling a little frazzled so Phil gave me a break for some mommy time. It’s not often that I choose to spend my mommy time tidying up the house, but it desperately needed it.