Author: Adria

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.

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.