Category: Serenity

Curiouser and curiouser.

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! 😉

An update

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.

Long term maintenance

We are in the final phase of treatment for ALL and it is so hard for me to believe. Maintenance lasts approximately 2 years and she will be getting daily chemotherapy for all of that time. But here we are at the point that I could not even imagine 6 months ago.

Last week Serenity had another lumbar puncture where she went under anesthesia and had methotrexate injected into her spinal column. She did well and woke up quickly. At the time her ANC and platelets were high, and her hematocrit was bordering on low but not quite low enough to transfuse. (I think it was in the low 30’s, if I remember correctly.) The doctor said that with the drugs she is on they usually don’t see the kids’ numbers crash like they do during Delayed Intensification. However, Serenity will need a CBC in another week so that we know whether her hematocrit has dropped, and if so she will have another transfusion.

If things go well we only have to go to the clinic once a month now! This is wonderful because for the most part we have been going once a week (or more) and a clinic visit is an all day excursion.

She is taking 6MP again every day, dexamethasone (steroid) for 5 days out of the month, and gets oral methotrexate once a week except for during the week that she will get it in her spine. This cycle repeats over and over throughout maintenance.

Serenity is doing well. She is walking again, albeit slowly and carefully. She has stopped throwing up and only needs Zofran on some days. Her eyelashes and eyebrows are just starting to grow back in. She has lost some weight, but not too much. She hasn’t complained about any pain for several days now. She has been running a low fever today, so we are just praying we don’t end up in the hospital over the holidays.

I am nervous about taking her out all day tomorrow and having her around a lot of family members. I know that I don’t have to worry most likely. Her ANC was very good (for a cancer kid) when she had her blood draw last week. But the last time we did a big thing with extended family she ended up in the hospital that night and we stayed for over a week. So yes, I am a little anxious.