Lifting Up Serenity

This is day 16 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 13 is here. 

This weekend has totally and completely sucked.  I’m sure a big part of it is the compounding effects of the events of the last two weeks, never being able to catch up on sleep, bumpy stuff with work, etc.  But the weekend that just won’t end started early Friday afternoon on a bit of a good note – I headed home earlier than planned. 

Turns out I wouldn’t have been there much longer anyway since on the way home Adria called me and said that Serenity had been completely not herself, pale, ornery, in pain.

Pain is expected – Leukemia hurts.

Ornery is expected – being on steroids just does that to a person.

But, rule 2,483,123 of having a child with Leukemia states: “If the child is not being herself and her color isn’t right, take her to the E.R. and get her blood checked.” It might be rule 2,483,122 – I’m not positive – actually, I think that one talks about never expecting your life to be normal again.

So, I cancelled my fantasy of maybe being able to actually go do something with Adria Friday night and got on the phone and started making arrangements for the other kids while I drove home, Adria packed our bags.  I got home and we loaded up Serenity and headed to the E.R..  She really didn’t look good.  By the time we got to the ER at Utah Valley, the oncologist had already been on the phone with Triage and they knew we were coming.  As we pulled up, I had my little speech prepared to keep us out of the waiting room (neutropenic means her neutrophil (a type of white blood cells) counts are extremely low and she has little to no immunity):

“This is Serenity Burns, she was recently diagnosed with Acute Lymphocytic Leukemia, she is neutropenic and is symptomatic of requiring an immediate blood transfusion.”

I spouted that a few times, feeling a bit like Jane from Firefly in the episode where they break into the hospital.  Anyway, they sent us into a room to check us in and the first question out of the RN’s mouth after hearing my little speech is:

“Has she recently been on any medications”

I was stunned for a minute, couldn’t think of anything to respond with that wasn’t just rude.  After a second I said without further hesitation, ”well, with recently being diagnosed with Leukemia, she is now on chemo, zofran, dexamethazine, prevacid, oxycodin, PEG injections, sephra on mon and tues, and has recently had about a dozen blood transfusions and as many platelet transfusions – but that really hasn’t changed in the last few days.”

Then it was her turn to be stunned and ask me to repeat the list slowly.  hehe. 

Anyway, we spent the next four hours in the emergency room.  They had to call a nurse down from the pediatric ward because they didn’t know how to access her port.  Then when the labs started coming back, we asked them for specific results.  They told us her ANC with 1.7 – it has never been above .01 since this started and we were startled.  They were ready to discharge us when I told the doctor how surprised we were about her ANC count.  As I explained the history, he nodded and then left.  A few minutes later the nurse came in and said, “umm, her total WBC (white blood count) is 1.7 – her ANC is zero and the doctor is on the phone with the oncologist”.  It would appear that we were a little more versed in blood chemistry than the ER doc, which isn’t really surprising since he’s not an oncologist. 

The good thing was that her platelets were 51 – which was pretty good for being 5 days since her last transfusion, and her red blood counts were good.  So we checked out of the ER and went home.

Now, those of you who know me well know that we are normally very tolerant, almost too tolerant, when it comes to medical situations with our kids.  After raising 8 kids you tend to get that way.  We haven’t taken one of our kids to the hospital in years and barely ever take them to the doctor.  We’ve had half of them at home, the twins have only been to the doctor once after they were first born.  The point is – we have been very clearly told that when it comes to Serenity we have to now be extremely paranoid.  Even though she was fine, we did the right thing taking her to the ER, the oncologist is the one that said we should.  We’ll probably do it dozens more times and be wrong, but on that one time we’re right it’ll be worth it.

So, that was a late night in semi-crisis mode.  She was up all night not feeling good at all.  Then Saturday everyone was really tired, Adria started getting a migraine and I had this bizarre allergic reaction to something – Adria thinks the new dryer sheets she switched to are the culprit.  So I took 50 mg of benadryll to combat the hives I was covered with and crashed around 2 pm – and woke up about 12 hours later feeling much better.

Adria woke up this morning with a killer migraine and I felt like crap.  At about 5:30, Sarek (13 year old son) walked into the kitchen and threw-up all over the place.  That was fun.  We pretty much just lazed through church – we didn’t really ever say “we’re not going”, just nobody had the energy to get up and get ready.  Serenity is incredibly needy.  I’ve thought about twittering every time she needs one of us to get up and get something for her, I swear it’s at least once every 5 minutes.  That’s fine, I truly don’t mind meeting all her needs – it’s just VERY tiring. 

This evening it was time to flush her port (she was re-accessed at the emergency room and we left her accessed since she has a clinic visit tomorrow).  When I lifted up her shirt I was shocked to find that her port dressing was full of blood!  I called the Home Healthcare Nurse and she came over about 15 minutes later.  She discussed the situation with the oncologist on call and after about half an hour they decided it wasn’t a critical situation. While there was quite a bit of blood, it wasn’t still currently bleeding.  The theory is that her platelets are low again and she probably knocked the needle in her port, causing it to bleed a bit and normally to clot quickly.  But they decided it probably just took a while to clot this time.  So I took a sharpie and outlined the blood levels so we could tell if they changed and the Nurse left. 

Tomorow we have a clinic visit in the morning at PCMC.  The weekend will hopefully end after that – but last time we were at the clinic it went unitl 8 pm.  I don’t really like this weekend.

 This is day 13 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 11 is here.

First, thanks to everyone who continues to comment and especially those that are still blogging about Serenity.  We really appreciate the emotional, financial and spiritual support that continues to roll in.  I’m preparing some stats on the chipin donations that I want to share in an upcoming post.  The amount that has come in is staggering, the number of people – especially those we don’t know – who have donated is amazing.  It’s all happening because of all the people who have installed the widget on their site and who have blogged about it, it really is becoming quite a study in internet based support.

Her Zofran, which is for nausea, ran out today – it’s only $250 bucks a bottle – so we have to get some more tomorrow.  I’m pretty sure we’ve already spent over $1,000.00 on medications.  We’re already getting bills from the hospital, it’s only a few so far – lots and lots more will come – and it already totals over $8,000.00. 

Serenity is doing pretty well, all things considered.  She still throws up several times a day but she has been eating pretty well.  She’s lost several pounds and looks frighteningly thin, but it’s to be expected.  She takes steroids to counter affects from her chemo and Perced to counter the effects of the steroids and zofran to counter the effects of it all, Oxycodin to counter the pain from the chemo and leukemia and Sephra to keep her from getting pneumonia that she is susceptible to from the chemo.  She panics everytime she sees a syringe, signs ‘all done’ (we teach sign language to all our kids when they’re infants) and says “No Medicine, done!”  Then screams as we force it in her mouth.  But, the screaming is subsiding and the panic is as well.  She now frequently says “no medicine” as a question every time we approach her (without syringes).  We tell her “not right now, but in a little bit” and she relaxes a bit.  I think she is beginning to adjust to the idea that she has to take medicine all the time although she has no idea why.  I think that’s the worst part – she doesn’t have any clue as to why all the sudden she is getting all these treatments and her parents are forcing her to take yucky medicine.  When she throws up she pushes her throw up tray away and says “all done” – at almost two years old she is already a pro at puking. 

There are happy times now too.  She frequently plays with the kids and likes to play little games with her parents.  Today she was playing “poke dad in the face” which she thought was absolutely hilarious.  My favorite times are when she finds something exciting and starts to laugh.  It’s a beautiful thing to see her laughing.  After all she’s been through in the last 2 weeks it’s just wonderful to have her with us and to have her laugh.