Fever is back down to normal (9:30 AM). Counts are going the wrong way! Down again today. Just had a discussion with Dr. B. We are switching Mollie to clindamycin, although I think Dr. B thinks this is viral and has a longer course (5-7 days). The clindamycin is because it still looks like Mollie might have some sinusitis and the clinda is better for that than the vanc, but still provides broad spectrum coverage. She thinks Mollie looks good, doesn't want to do a flu test because if they do it, they have to move Mollie out of the oncology hallway and into the main hall (without the benefit of the positive pressure rooms). Also, Mollie got her regular dose of Septra yesterday, which can suppress counts, so we are now holding that as well as the chemo. So, we wait and hope the counts start going up. We are all encouraged that there is a longer time between fevers. I wish there was something else we could do to bring the counts up!
Mollie seems well. I stopped and got her a bagel with cream cheese on the way to the hospital this morning and she had the biggest smile and scarfed it down! And she had already eaten her breakfast. Right now she's up drawing on the white board in her room and we're tied after two games of Pretty Pretty Princess. We've been working a little each day on making a haunted house out of a cardboard box, so we'll probably work on that a little more today and just try to keep busy.
Thanks everyone for all the encouragement, cards, etc. It really helps keep our spirits up!
Dr. S just came by. Mollie's WBC are the same as yesterday (0.5), and her other measurements (HgB, Hct and platelets) are roughly the same as well. No ANC yet (I hate it when they come in here without it). She had tylenol at 9p last night and had slept well since then. Cefepime at midnight, then normal temps at 1A and 4am, vancomycin around 5am. He also mentioned that her IgG levels were low, but not so low that they would need to transfuse her. I was happy to hear that, Mollie had an infusion to bolster her IgG level during her December stay and had a reaction to it - one of the scariest moments we have had during her treatment.
So, at this point we are at 10 hours and counting with no fever. Need to get to at least 24 before we go anywhere.
Update (1:30 pm) and FAQs:
We missed the doctors rounds this morning because Matt and I were doing the "Lucy exchange" downstairs. Mollie reported that Dr. B told her to keep blowing her nose. I'm sure if there was a change in "the plan", Dr. B will come back and let us know.
Mollie's temp was 37.8 @ noon; now she feels warm to me so I wouldn't be surprised if it is higher.. She just had a session with the school teacher, Ms. Pam. They did a lot of the make up work that her teacher sent last week and she enjoyed being out of the room and getting attention from someone else! Mollie didn't eat any of her lunch (don't blame her- it looked unappetizing) and doesn't want the bagel I got her (they didn't have plain, ugh) so she's grouchy and hungry. She only wants french bread and cheese or a bagel from Einsteins or vanilla yogurt. I'm going to try to get her to eat some cereal.
A few people have asked about blood counts and ANC. Every time they draw "labs" the blood is sent for a CBC (complete blood count). This measures the number of red blood cells (RBC), white blood cells (WBC) and platelets in the blood sample. Neutrophils are a type of white blood cell that is the body's main infection fighter, but only a percentage of white blood cells are neutrophils. The ANC (absolute neutrophil count) gives the total number of neutrophils and is a measure of infection-fighting ability. To get the ANC, they have to do a differential count, where they look at all the white blood cells and then calculate the percentage that are neutrophils, lymphocytes, monocytes, etc. They multiply the total white cell count by the % neutrophils to get the ANC. An ANC below 500 is considered neutropenic and requires special precautions to reduce the chance of infections.
Another question is why the temperatures are reported in Celsius. I think most hospitals now use the metric system exclusively. Pediatric medications are usually dosed in mg/kg body weight, so for consistency, I think they measure everything using the metric system.
Julie, we don't have a printer here, but Matt and I are switching shifts at least 2x per day so we can print things from home and bring them here.
Update @ 4:30 pm: The fever continues (38.4 @3:15). She got some tylenol about an hour ago, so hopefully that will bring the temp back down. Dr. B says keep waiting- she may have a virus that won't respond to antibiotics and just has to run its course.
Mollie is in a good mood though- she's been using the nurse-call button as a microphone!
Updates from Matt
Fever is back (38.4 C). Mollie has been given Tylenol to knock it back, and they will be switching the antibiotic regimen to Vancomycin as soon as the pharmacy can get it up here. Mollie has had this medicine before, last year in December when she had the long hospital stay. I am optomistic that this will work but concerned that her fever has persisted this long and that the docs are bringing out the heavy hitter. Despite all of this however she is in a good mood and is resting well in between wakeups.
The resident, Dr. S, just came by. Mollie's ANC is up to 126 and her cultures are still negative, both of which are very good pieces of news. The vancomycin drip is going now, and as of 3:15 her fever had subsided (Tylenol helps). So far so good.
Back at home... Lucy isn't feeling too well either. She keeps giving lovely hugs, which would be very sweet except that you come away from them with snot all over you. This is especially unfortunate for me since I really only have one pair of maternity pants that fit comfortably. And while I'm complaining, I bought a bunch of groceries the day Mollie went into the hospital and was planning to make at least 5 or 6 different meals to freeze. Of course, I haven't had the opportunity to cook anything, so all the veggies are starting to go bad. I guess I just needed to vent about the little things.
I sure hope both of my kids feel better soon!
Update from the hospital, 2 PM: Mollie spiked a fever again, 38.5. They just drew blood to check her IgG levels, cultures are still negative. She is resting in bed now, but two therapy dogs just came to visit and that got her to smile! One of them bowed down to her and danced and the other one hopped up into her bed! Her school sent her some lovely pink flowers- that got her smiling too! And she just got a huge Pooh and Piglet balloon from my parents- another big smile!
Update @9:45pm from Matt: Fever is back again, now at 38.2 C and headed the wrong way (was 38.1 an hour ago). Mollie got some tylenol and has fallen asleep. Plan for tonight is the same as last night, lab cultures around 1:30 and vancomycin drip now, with cefepime around midnight.
Mollie and I watched part of an old Don Knotts movie, "The Ghost and Mr. Chicken", on DVD before she went to bed. It used to come on TV every year around Halloween and I was telling Mollie how it was one of my favorite movies when I was her age. She liked when he would do his karate moves but for the most part I think there is a generation gap there!
The hospital is full; normally neutropenic patients would be placed in rooms "behind the glass," in a hallway that has positive pressure rooms with a separate airflow, but none of those rooms are available. The last time we were in the hospital, I think we were the only ones in that hall.
Mollie is sleeping soundly, at least until the "team" comes in to check her out.
Update from Matt : Mollie is awake and in a good mood, Ms. Kym brought a huge bag of toys and I have been defeated twice in Pretty Pretty Princess. Ate some Froot Loops for breakfast and eating lunch now. Dr. B doesnt think it is a UTI after all, at this point the cefepime seems to be addressing whatever the issue is and we will be waiting for her counts to rebound.
Tmp 37.8 C, bp 130/59.
Update from Sarah (3:30 PM): Fever is back up to 101. Lots of crafty supplies were just delivered so Mollie is keeping herself busy doing some cool artwork. We were going to make a haunted house out of a cardboard box, but I couldn't find any black paint. Have to save that project for tomorrow.
8:30 PM Update from Sarah: Mollie's fever came down with Tylenol and the course of treatment hasn't changed- watch and wait. They may give her some claritin and will consider switching antibiotics if the fever spikes again. Mollie is in great spirits- we did a lot of artwork, played some games, and she spent a while playing games online (PBS Kids and Nick Jr.). She shas a good appetite and wanted to go for a walk (but couldn't because of the low blood counts). I hope she has a good night tonight and tomorrow continues to improve.
Update #1: We are still waiting on counts, but the doc says it looks like she will be admitted. Mollie is really, really bummed out. She keeps asking how much school she will have to miss and making up little songs about how the doctors are good but she doesn't like coming here. I'm worried about my sweet little girl.
Update #2: It looks like she has a UTI and will definitely be getting admitted. She is sleeping on a cot in triage right now and waiting to be transferred upstairs. She already got a dose of cefepime (antibiotic). Hopefully that will start working right away. It's kind of lonely here and I'm not looking forward to sleeping on the uncomfortable couch in the hospital room. But, maybe we've finally gotten the answer to what's been making Mollie feel so puny (as nurse Kate would say) for the last week or so.
Update #3: We are now "settled" in to the room. Mollie's ANC is very low (I still don't have a number, but her white count is 400 and the ANC is only a fraction of that). The medical team is pretty sure this is a urinary tract infection and are treating it as such for the moment. They are doing blood and urine cultures so we might know something more tomorrow. They will not release her until she has been fever-free for 24 hours and her ANC is trending up. At the minimum. My guess is that they will hold her chemo so that her counts start to rebound. Cefepime, do your stuff!!
Thoughts from me at 3 AM: Man, this sucks! Matt was supposed to go out of town this weekend to run his first marathon, and it looks like Mollie is going to be in here for at least a few days. Plus, with the "flu policy," we aren't going to be able to bring Lucy to the hospital. That bites on so many levels. It is going to be extremely hard logistically, because we don't have anyone else to care for Lucy. And even worse, Mollie and Lucy are going to miss each other!
Hopefully, she will continue to feel better, despite the cold weather, and will be ready for her flu shot next week. Lucy was supposed to get her flu shot this week, but she woke up with a fever today! We think it is from teething, or maybe she's just getting a cold. I took her to the pediatrician to get checked out and I wanted to run out of the building because of all the sick people in the waiting room! I hope we didn't catch anything while we were there.