Category: Serenity

I think maybe I whined a little bit too much in my last post. Thanks for putting up with me.

Serenity has been ok with the increased dose of methotrexate. She has been grumpier than usual, and there are times when she cries and cries and I can’t figure out what is wrong, but they are short lived. I am assuming and hoping that her numbers are still ok. (They were on Monday.) Because the kids and I have been going a little stir crazy and so we’ve left the house a bit. And we went to Arctic Circle. And I let her play in the children’s play area. Hopefully it wasn’t too tremendously germy.

Normally she doesn’t ask to go over there and so she and I just sit and watch the other kids. It’s a small restaurant and usually pretty empty. But this time she did demand ask and I gave in and said yes.

She was wearing her little Cancer Chic shirt and someone came over and told me she reads the blog. It totally made my morning. And I was distracted and didn’t even ask her her name or say anything much so if you are reading…Hi! I’m sorry I wasn’t friendlier!

That evening I had Serenity with me at Walgreen’s and a woman came over to me and said how much she liked Serenity’s hair. She asked if “he” had been born with hair, and did we buzz it or what. I explained that She had cancer and understanding dawned on her face as she said, “She has leukemia!” Yep, that’s what she has. The sweet woman then proceeded to tell me that Serenity will be just fine because the treatments for leukemia are so remarkable. And she is right. They have come far; they are remarkable. Not a day goes by that I don’t think about how fortunate we are that Serenity is low risk ALL.

ALL has about an 80% cure rate. That is really awesome. It also means that 1 in 5 children die. And while I know that people are trying to say the right thing by being so positive, sometimes it feels like they gloss over the fact that this is really hard. I had an acquaintance tell me a few weeks ago that cancer is really no big deal anymore (speaking of Serenity) because of how far the treatments have come.

Let me assure you, it is a big deal. A little boy close to Serenity’s age died from ALL recently. We know people who have dealt with AVN (where the bone tissue actually dies), mouth sores so bad that the child could not eat and had to take oxycodone for the pain. We know of a little girl who has had multiple brain surgeries, several children in wheelchairs, many, many children who are repeatedly spending weeks in the hospital because of infection or low counts or fever. All of these kids with ALL. Every day that goes by I worry what might happen, or wonder whether we will really come through this unscathed.

Please don’t tell me that I have nothing to worry about. Please don’t tell me that this is no big deal. And for heaven’s sake please don’t tell me about the person you know who had leukemia and died, but I don’t need to worry about that because it was a long time ago and they’ve come so far since then.

Just tell me that you care. I promise that is enough.

Having a cancer kid is our new normal, and most days it’s not something I dwell on. We’ve been incredibly fortunate that Serenity’s side effects have been manageable, and at times it’s easy to look at her and think she is not so different from a healthy kid.

Then there are other times when it all feels very surreal. Those are the times when I think about picking my baby up, leaving the hospital, and proclaiming to the world, Enough! We are not doing this ANY MORE. It feels like if I try hard enough, I can ignore the whole thing and pretend we are back where we were before she got sick.

I went alone with Serenity to her appointment today. I was a little nervous, because it’s become very routine and there are certain things that Phil does each time. They’re his job, and I don’t do them the same way, and I was afraid I would forget something and she would become upset. But it went ok.

Parking was horrendous. I have never had to park far away and today I had to park on level 3 because the parking lot was so full. Serenity wore her mask into the building and was a good sport about the fact that I can’t put it on her face quite like Daddy does. The oncology clinic was crowded and we had to wait longer than normal. She allowed the nurse to weigh and measure her without complaint, which has only happened one other time. We sat at the craft table and did stickers.

When we were assigned to our room she didn’t want to sit in the rocker, like she normally does. We sat side by side on the bed and a woman from Child Life came in to say hi and bring Serenity some toys. It wasn’t the Child Life person that she always sees, so she was a little bit wary. She held perfectly still while they accessed her port, another thing that she has only done once before. She winced a little, which made me wonder if it hadn’t numbed enough.

Her numbers were good so she didn’t need a transfusion. I pointed out her peeling hand and foot to the nurse who said that it was probably a side effect of the methotrexate. She allowed the nurse practitioner to examine her but when he tried to look at her mouth she burst into tears and sounded very frightened. I think she had been nervous all along, and suddenly it became too much.

She didn’t want to sit on my lap when it was time for the chemotherapy infusion, so I had to do some convincing. She decided she wanted to watch her little DVD player and the big TV in the room simultaneously, which made it impossible to hear anything. Every couple of minutes she would yell, “Push pause!” and I would pause her movie. She’d immediately push the play button, wait a minute or two, and then yell for me to pause it again.

On the way home I thought about the fact that everywhere I look, there is something to remind me of the overwhelming support Serenity has received. She watched her movie on a DVD player that was a gift. On the drive up she played with toys that she has received over the past 2 months. Her dress and shoes were purchased with money that had been donated. The stuffed animal she brought and the blanket that she used were gifts. It is easy to feel frustrated and overwhelmed because the novelty of her diagnosis has worn off and sometimes it feels like the world has forgotten her. Today I was reminded that she is loved by many.

Last week all of the kids got a present in the mail from someone who doesn’t know us, but heard about our story. It was a good day and all of my kids were happy.

Serenity has complained about her tummy hurting since our visit, and I’ve given her some zofran. She hasn’t thrown up but she also hasn’t eaten. Thank heavens for nursing. She’s had some diarrhea so I am trying to keep her well hydrated. She has been cranky and short tempered which is so unlike her. I hope that it is just because of a long day, and not because of the chemo.

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.