Learning The Parameters

by Julie
Published on: November 16, 2011 11:29 am
Comments: 9 Comments

Sometimes it’s very hard to write a blog post, especially when it involves a lot of detailed terminology but not a lot of answers.  But here we go.  I’ll wager that you may be qualified to go to medical school by the end of this post.

So, Tim posted about neutropenia the other day.  Neutropenia is determined by checking ANC levels – ANC stands for Absolute Neutrophil Counts.  Neutrophils are a subtype of white blood cells, and they are your body’s first line of defense in fighting infection.  Nurse Allison reports that the average ANC they expect to see would be about 6,000 (Medicine.net reports that counts from 1500 to 8000 are considered normal).  Chemo kills cancer cells but also your neutrophils, and this is why they give the colony stimulating factor shot during chemo (which I posted about over the weekend) – this shot encourages your bone marrow to make a bunch more neutrophils.  If your ANC falls below 500, you are considered neutropenic, which means that your body can’t fight off infections and you are in danger of very serious infections that your body is usually able to fight off with ease.

Alright, so enough of the general lesson.  Phenon’s ANC on Monday morning was 8,800 – above the average range, likely due to the inclusion of steroids in her chemo regimen.  But the steroids ended Sunday night.  Monday afternoon, Phenon got a low grade fever, felt extremely weak and shaky, and was unable to hold down any food.  A low grade fever (100.1 to 100.9) sustained for one hour buys you a 48 hour hospitalization. We got to the hospital at 5:45, and saw Phenon’s fellow (Payal).  She assured us that it was EXTREMELY unlikely that Phenon was neutropenic because her ANC had been so incredibly high that morning.  Oh, if only.  The ED lab results came back, and Phenon’s ANC had dropped to 250.  This is apparently an incredibly rare single day drop.  Our girl is once again unique and outstanding. (Ahem – might I suggest that you be boring, for once, my girl?  Just a suggestion.)  Anyway, since we weren’t admitted to the oncology floor until about 1am Monday/Tuesday, the earliest possible discharge is 1am Wednesday/Thursday.  But seriously, we all know they’re not going to discharge us at 1am, regardless of the circumstances, right.  So, realistically, the best case scenario would be discharge by noonish on Thursday.

Phenon’s attending doctor (Shana) said that what they need to see for discharge is a steady climb in ANC levels – they can be as low as 200 for discharge, as long as they are climbing.   When they re-tested her on Tuesday morning, they had dropped further, to 60.  I just now got today’s results – they have climbed to… (drum roll):  70.  Sigh.  That’s not climbing enough.  This makes is unlikely she will be discharged before Friday.  (I’m not feeling super optimistic about Friday at this point, but maybe that’s my defeated attitude this morning…)

In the meantime, there are other things happening.  When they did a “smear” (looking a Phenon’s blood sample, smeared on a slide, under a microscope), the few white blood cells she had showed signs that they were working hard to fight off an infection.  So, the hypothesis is not just that she’s neutropenic, but that she has something that her immune system is trying to fight with very few resources.

The doctors disagree about what this infection might be.  We are witnessing a power struggle and “polite debates” between doctors from different parts of the oncology floor, and I am finding them incredibly entertaining – like watching a soap opera, except with important outcomes.  The attending and resident for the inpatient unit think that she might have typhilitis.  This is a very very scary infection that it is important to kill right away because it is bad.  Google searches on this infection make me feel sick to my stomach and a deep kind of terror.  They are treating her with massive amounts of antibiotics to kill this and other related types of infections that can infect the gastro-intestinal tract.

They are also giving her a broad spectrum antibiotic to kill any other possible infections.  On the other hand, her usual doctors (Shana and Payal) do not think she has any symptoms of typhlitis, and think that what the inpatient docs are interpreting as stomach pain is actually a problem with listening skills – they think that Phenon is reporting discomfort in her stomach only when it is being pressed on hard by the many people obsessively checking her stomach.  She does not have any pain in her stomach when it is not being pressed on.  They are obviously having all of these discussions politely, but the undercurrents we are watching are really entertaining for a psychologist looking for a good distraction from the helplessness of not being able to stop my child’s suffering.  If her “symptoms” of typhlitis increase, she will require more xrays and CT scans in addition to the constant flow of antibiotics.  If they do not, she keeps getting the antibiotics, but then gets sprung from the hospital when her ANC levels show progress.

Because of this mess, Phenon has not been able to eat.  When she shows she can hold down clear liquids, they authorize her to try bland solids.  Then she eats bland solids, feels AWESOME for about an hour, and then feels horrid for about an hour, then vomits it all back up.  When she can’t eat, she feels hungry and MISERABLE and angry.  There’s been lots of anger and lots of outrage.  When she starts to feel sick after eating, there’s misery and hopelessness and a sense of outrage that she feels bad when she doesn’t eat and feels bad when she does.  They’ve stepped up the anti-nausea medicines like crazy, but with sadly limited results.  She’s tired of feeling like crap.

So now we sit.  Phenon has been invited to the teen room for a Harry Potter marathon, but was unable to go because she was vomiting yesterday.  The teen room person (another Zoe!) brought her movies 2 and 3 (Phenon asked to start at number 2) to watch in the room yesterday.  The art room art therapist also came in yesterday to invite Phenon in and to offer her art materials for bringing to the room.  Phenon rejected those options – no interest at all.  Child Life also came by and offered entertainment options.  Phenon rejected those too, but did talk to the Child Life specialist (I can’t believe I don’t remember her name!) about both Harry Potter and the Hunger Games, which the Child Life specialist is reading right now.  The music therapist just left for a conference, but we witnessed her working with occupational therapists in the hallway yesterday helping a girl re-learn how to walk after brain surgery.  The music therapist was playing guitar to help set a rhythm for taking steps.  Children’s really is an exceptional, amazing place that works HARD to help youth deal with this misery in a resilience-promoting way.

I slept at home last night.  Rowan missed school Monday and Tuesday not feeling well.  He went to the doctor yesterday, and though there were not clear signs of either pink eye or strep or any other bacterial infection, they decided to treat him with antibiotics and eye drops to be sure there were no infections in the house.  My mom came over this morning to spend the day at home with him, but at the last minute, he opted to go to school after all.  (He’s been on 24 hours of antibiotics, so he’s not contagious, if he ever was, but I decided to let him stay home if he felt the need for a break and some extra TLC.)  I’m going to make some calls to see if he can have a play date with someone this afternoon, then Tim will pick him up and spend the evening and night with him.  I’m back in the hospital today.

While Phenon sleeps, I’m writing this post, then finishing up the grading and paperwork I need to do in order to officially hand over my classes to the long-term substitutes they found for me.  I have been insufficiently gushing in this forum for the incredible bosses I have at both of my jobs.  Both have generously offered me long-term leave that I don’t actually have at either job, and both have held my jobs for me to return to when this is done.  Neither is obligated to do that.  Both have also been incredibly compassionate, and warm, and generous with their time and understanding throughout this process.  That’s what you get for working for psychologists, I guess, but I still feel incredibly, incredibly lucky.

Phenon has also been assigned her teacher for home-hospital teaching.  But her teacher can’t come to the hospital this week because it is outside of the county.  This is frustrating.  But, Bobby and Tania are coming today to get her started on Spanish tutoring, so at least she can start catching up on that.  Everything else will have to wait a little while, it seems.

And that, I suppose, is that. I imagine that this post may leave you, dear reader, feeling exhausted.  Perhaps head swimming with details about ANC levels, thyphlitis versus not, hospital drama, and thoughts of what counts as bland food.  Or maybe I’m projecting what’s in my head.

 

 

9 Comments
  1. Maureen says:

    Thinking of all of you! Hopefully Friday will be the magical day for Phenon to come home. Please let us know if there is anything we can do for you!

  2. Len and Amy says:

    Hang in there guys- we’re thinking of you all.

  3. Zoe says:

    I hope Friday Will be lucky. Thinking of You!

  4. Gabbie says:

    Same. I miss you!!! <3

  5. Cheryl says:

    Oh, i am so sorry you have to go through all this. “through” is the opeerative word, though. You will make it the other side. When you do, you,ll look back and marvel at how awesome you are. Still thinking positive thoughts and sending love. Cheryl

  6. Rich Reilly says:

    Have been through something like this with someone very close to me. It’s a rollercoaster ride, albeit a bit longer. There’ll be ups and downs, scary parts, good days and bad. But when the ride stops, you unbuckle your safety belt, get off and scream and laugh your way to the next big thing in life. And, by that, I don’t mean cotton candy. Who knows what they really put in that?

  7. yael aka Mrs. Faleder says:

    I am so sorry you are going through this , all the while educating us beyond belief..your words are profound. We continue to think about you and send lots of love.

  8. Aliza says:

    Yeah same as zoe and gabby and manpreet I really hope you get better soon!!!!! I miss you sooooo much!!!<3<3<3<3hearts<3<3<3<3<3<3

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