Toxic Liver

Getting hydrated at clinic

This week threw us for a loop.  When things seem to be going well, there has to be hiccup.  We planned an adult only get away; that should have been our clue that something was going to happen.  Kennedy started showing symptoms of a cold last Friday; which kept Mom and Kennedy home from a ski getaway with Dad, Maddox and some friends. K started feeling better on Wednesday and we were all set to send her to school on Thursday - wrong.  Thursday morning she threw up.  This made me worry and I started to add up symptoms – bruising, joint pain, headache, stomachache, nausea, cough, stuffy nose, night sweats, weight loss - the same symptoms we saw when Kennedy was diagnosed.  I stayed home and called Dr. Manera and he told me to bring her in on Friday morning.  She threw up again on Thursday night and was miserable.  I did everything I could not to panic.

Friday it snowed and the world forgot how to drive.  It took us nearly 1.5 hours to go 25 miles to clinic  When we did get there, doc determined K’s counts were good but she was severely dehydrated.  They pumped two bags of fluid into her and sent her home.  She also lost some weight (3 lbs) so we were able to decrease her weekly chemo by ½ pill – which was fine because I took it upon myself to decrease it by that much the night before.  I mean, who can give a pill that causes nausea to a kid that just threw up so I gave her the smaller dose.  (She takes 1.5 pills of 6mp four times per week and 1 pill 3 times, I gave her 1 on Thursday night versus the scheduled 1.5).

Two hours after we left clinic Dr. Manera called, our conversation went something like this (of course this is abbreviated to edit out me panicking):

Doc: “We got her virus culture back and it is rino-virus, aka the common cold”

Me: “That’s great, just a cold…hmm, why is she throwing up?”

Doc:  “Lots of kids have been very sick from rino-virus, in fact, I’ve had to hospitalize a few for dehydration and fevers”

Me:  “Okay, guess we are one of the lucky ones”

Doc:  “There is another thing….her liver enzyme counts were very high, more than 20 times the normal level of toxicity”

Me:  “Well, what do we do, what causes this?”

Doc:  “It could be the chemo, we will need her to come in on Wednesday and have her blood taken again for counts, if it is still high, we will need to put her on chemo hold”

Me:  “Oh no, Gene and I will be on vacation, should we stay home?
Doc:  "No, no big deal, lets test her the following Monday then"
Me:  "But then she will have another round of Methotrexate on Wednesday night, I’m sure I can find someone to take her”

Doc:  “Just make sure they have a POA”

Normalcy - K lost her first tooth

I got off the phone and flipped out.  First, how could I send K to clinic with anyone but us?  Then, of course I played doctor by researching on the internet and learned that many docs stop chemo when the patient’s liver enzymes are 5 times toxicity.  Of course I paged the doctor back and told him we should put her on chemo hold now.  He talked me out of it - stating that by Wednesday it might go down, it could just be from the cold and dehydration.  I made him swear that her best interest was taken into account, regardless of the protocol.  He assured me her best interests were being considered first.  I can’t do anything but trust him, he is one of the best and he told me he’s seen this countless times.

Then the planning started…do we stay home?  Do we send her to clinic?  If so, with who?  No one knows where clinic is, or about how we don’t sign in, where to sit so we are away with flu-sick peds kids, how to put on Emla cream pre-clinic, etc.  I called 4 people to figure it out – Grandma and my 3 new friends that I made from clinic during the past year - Kate (Ella’s Mom who’s been through this), Donna (her son is also in treatment) and Megan (the child life specialist at Loyola).

Cookies made by K when sick

We figured it out.  Kate is going to go to clinic with Grandma and Donna and Megan will be there too.  Kate even made it one step more special by letting Ella miss school to keep Kennedy company. Kennedy is ecstatic she can sleep at Grandmas the night before and can’t wait for her clinic play date with Ella.  She hasn’t had a play date in months!

I spent the last few days scheduling every day we are gone.  Who goes where when and what meds are given on what days and who will give them.  I have a daily calendar that is structured by the hour.  For me this is huge, I am NOT an organized person.  If anything, we are 5 hours away.

Now to get on the plane tomorrow morning….