Lifting Up Serenity

I have an confession to make.

We haven’t always been giving Serenity’s 6MP the way we are supposed to. Actually, I do not think that the clinic gave us any instructions aside from not combining it with dairy or citrus products. But I knew from my friends on the ALL list that it is supposed to be given 2 hours after a meal or 1 hour before (always on an empty stomach).

We tried. We tried hard. In the beginning we would wake Serenity in the night to give it to her and she did NOT like it. She would kick and scream and spit it back into our face and we quickly decided that trying to get it in her at night was pointless.

So we switched to just before bed. I should mention here that she usually nurses to sleep, but I consoled myself with the knowledge that breastmilk is not the same as cow milk, and honestly, getting her to sleep without nursing is near impossible. (Actually it IS impossible if I am also trying to get the other little ones to bed.)

So I had gotten a little lax and there were even a few times that she ate before taking the medicine, but she is so thin that I wanted to let her eat whenever she was willing.

So lately on the list there has been some discussion of just how very important it is that the 6MP (which she takes daily, by the way, and will for 2 years) be taken on an empty stomach, at night, and especially not combined with dairy or citrus. And I started to worry and feel guilty and I followed the links and started looking at some of the research.

From what I can tell the compound in cow milk that interferes with the 6MP absorption is also found in breast milk. And it really IS important that she take it on an empty stomach. So I feel horrible, knowing that I should have been more stringent about all of this.

So I’m working on getting her to take it after she goes to sleep. She still doesn’t like this, so what I’ve been doing is giving it to her before bedtime, but then waking her up a few hours later and giving her a small dose of water. That way it doesn’t matter that she spits it out and gets upset. I’m hoping after I’ve done that for several nights, I can transition to just flavoring for a few nights, and by then maybe she will be accustomed to it and fight less. At that point I can start giving the medicine along with the flavoring.

I’ve explained to her that she can’t eat after she takes the medicine, and she understands and is being a good sport about it. It’s still hard to get the timing just right, because she still expects and needs to nurse at bedtime. Phil & I think that getting a timer will help so that we can “show” her when she can eat or drink again. And from here on out, I’ll just do better.

After the last time I posted I came to the conclusion that Serenity was probably having an allergic reaction to her Septra. I didn’t / don’t know that for a fact, but I was pretty sure of it.

On Monday she was due for a CBC and Home Health informed us that we now have to pay out of pocket for home visits. So on Tuesday we took her up to Primary Children’s for the blood draw. Her legs were bruised and she seemed less energetic, so I was fairly confident that she would need a transfusion of something. As it turned out she did not; her numbers were fine.

I think the doctor and the nurse were a little impatient with all our questions. It was a busy day and they had worked us in and I kept explaining over and over that something was not right and that her symptoms didn’t make sense. The nurse insisted that it is not uncommon for the kids to get rashes that come and go during treatment for no apparent reason. I did not mention that I hadn’t given her her Septra that week because I wanted to see what would happen to her rash.

I mentioned in passing that we had not given her her dex yet because of the rash. The nurse just about fell off of her chair. Apparently when they said “hold everything,” they meant her chemo but not her steroids. I didn’t know at the time that the dexamethasone is timed to coincide with the day she gets IV vincristine and the 4 days that follow. (She had received her vincristine a few days previous.) There was much discussion about what to do and the doctor ended up coming in to see her and tell me to go ahead and start the dex.

We also resumed giving her Prevacid, which I think is what’s helped keep the vomiting at bay. I told the nurse about her bone pain and she said it could be a side effect of the vincristine, along with jaw pain. That made sense because she had complained about her mouth also and it did happen about the same time she received the vincristine.

Serenity is doing well and back to taking her oral chemo as well (methotrexate and 6MP). Her rash has gone away again. She is due for more Septra tomorrow and the next day, so we will see what happens when I give it to her.

We have so much else going on right now. Life is crazy and it is such a relief to see her doing so much better.

Serenity threw up several times during the night and neither of us got enough sleep.

This morning she seems to be feeling better but her rash has worsened. She has even more spots and they are red and very painful looking.

Serenity has been feeling pretty good, aside from throwing up every once in awhile (for no apparent reason).

Today we had a clinic visit and her spots are back yet again! It is possible to scrape one of the lesions and test for varicella (chicken pox) but none of hers looked especially “juicy” and since she has already had a course of the acyclovir the doctor decided to keep holding her chemo and see what happens in the next few days. She did get her vincristine today, but hasn’t had methotrexate or 6MP since this all started, and he is particularly leery of putting her back on the steroids if she is fighting something. (She was due to start steroids today.) So the plan was to wait and see and check with the clinic Monday.

Serenity got a huge stocking at the hospital today, filled with candy, a Barbie, art supplies, and all kinds of other goodies. The stockings had been donated by students in the University engineering department. She also got a new hat, and received so many compliments on it! We think she looks especially adorable in it.

We were in and out very quickly but did get a call when her labs came back that her ANC is 0.1 (very low). It means she is very susceptible to illness right now. So instead of resuming treatment on Monday, she will be getting another CBC and then decide what to do.

Her appetite hasn’t been much this past week. She weighs the same that she did last month, and her weight for height is good, but the dietitian did want to speak to us because she would like to see her weight trending upward over time and instead it has been constant.

I’m a teensy bit nervous about her getting hospitalized during the holidays, and the day after Phil and the 3 kids are going on a 5 day camping trip. So think positive thoughts for us! 😉

I’m too tired to write a long & detailed post, so instead I will cut & paste part of an email that I sent to the ALL list I am on.

Last week Serenity woke up covered in bumps. Some looked like pox and others looked like bug bites. After a few calls to the pedi and the onc clinic I took her in where the pediatrician diagnosed her with chicken pox. We went to the children’s hospital and started IV acyclovir. The first day the spots were increasing like crazy but once we started the acyclovir some of them started to fade and she didn’t get any new ones.

They let us go home on IV acyclovir every 8 hours and told us to call the clinic after a week & see whether to discontinue or switch to oral. I got the feeling that there were a few docs who weren’t convinced it was chicken pox (they saw her when it was getting better) so we were told to hold off on all chemo just in case it was the methotrexate causing the problem.

Fast forward to today, day 9. She has been feeling fine, and actually only a couple scabbed over which led me to wonder if maybe it wasn’t the CP after all. Or maybe the acyclovir just did an awesome job clearing them up. She has one more dose of IV acyclovir & hasn’t taken anything but Septra & Zofran for over a week. Now she suddenly has spots all over her legs and stomach again! It makes no sense to me. Shouldn’t she have had them earlier in the week instead of on the last day (but before we’ve stopped meds)?

Then later after talking to both the oncology nurse and someone from the pediatrician’s office:

Well…I got 2 different answers but at least we didn’t have to spend the weekend in the hospital.

I called the pediatrician’s office, who called back and said they thought it was still the chicken pox and to keep taking the acyclovir.

Then the oncologist’s nurse called back and said that they were not convinced it had ever been chicken pox, so stop taking the acyclovir and see what happens.

She still has the bumps but no fever. We have a clinic appointment next week so I guess we will watch and wait.

Last night and this morning Serenity threw up several times. She’s also had some diarrhea so I hope she is not coming down with something. She is still taking only Zofran and Septra and we have an appointment at the clinic on Thursday. I worry a little bit about taking so much time off of the chemo but I understand that we need to not tax her system when she is fighting illness.

Lately she has been extremely clingy – more than ever before – and very very angry. I’m sure it’s due to all we’ve been through lately but it’s hard to handle sometimes and even harder to watch.