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….

Kicking Cancer's Butt and Icky Chemo

Waiting at clinic

Today marks almost a year since Kennedy was diagnosed with ALL B-cell leukemia.  It was February 2, 2012, when we learned our 4-year old baby was in for the fight of her life.  Here we are, almost a year later and we are 1/3 done with treatment.  Some how we face the year anniversary of her diagnosis with dread; I don’t know if we will ever erase the feeling of that day from our hearts but we will certainly try to move past it.  So now it’s time to party, to celebrate her life and this past year of kicking cancer’s butt.  I’m not quite sure what we’ll do yet but we will definitely thing of something!

CureSearch 2013 Brochure

I mentioned in my last blog that Kennedy was being used in a video montage for CureSearch.  Well, we also found that they are using Kennedy for the nationwide CureSearch Walk brochure cover.  It’s part exciting and part sad.  It’s exciting that out of a ton of patients and pictures, they chose Kennedy to represent CureSearch in a big way.  It is sad because it is for children’s cancer and I wish from the bottom of my soul that she didn’t have cancer to be a model for.  Guess what charity is my focus this year????  Anyone gearing up for that September, CureSearch walk yet?

K and Zoe Snowball

Kennedy had chemo on Wednesday – the yucky kind called a lumbar puncture (or intrathecal).  They inject Methotrexate into her spine to prevent any rogue cancer cells from entering her brain or spinal column.  This treatment is the worst for us as parents to watch since Kennedy is put under.  This time it was particularly painful because she was overdosed with Ketamine and it took three attempts to puncture the correct part of her spine.  The procedure started with the anesthesiologist (that I never met before – Dr. Ebogi?) administering 20 mg of Ketamine.  Her normal dose is 20 mg and he pushed it in rather quickly.  Once Dr. Sarvita punctured her back, Kennedy mumbled “ow” lightly; this is typical.  Then K repeated “ow” and then added “Hi Doctor” – not good.  The anesthesiologist decided to administer more Ketamine, 10 more mg, way more than she needed.  After 2 more attempts, Dr. S punctured the correct part of her spine and we were done.  Another highlight of last weeks visit is that her 6MP dose was upped.  K didn’t gain weight but she did get taller – darn those growth spurts.

The after effects of the chemo weren’t good.  She normally handles it all pretty well but she was terribly nauseated for the rest of the day, exhausted and complained of back pain.  All of which could have been avoided.  The good part about the clinic visit that day is that we were in and out quick, under 2.5 hours, which never happens.  Also, Kennedy received a special bald American Girl Doll from Megan, K’s child life specialist and my friend.  Her new friend’s name is Zoe Snowball – aka Snowy.

Roller Skating

Skiing

Safari Land

Safari Land

Outside of an unpleasant clinic experience, all else has been going well.  Mom had the flu so we spent a week a part where I couldn’t hug or kiss my princess - masks and sanitizer were a big must in our house.  I took 2-weeks off during holiday break and spent much needed time with both kids.  We went ice skating, roller skating, had play dates, visited John Hancock Observatory, Safari Land and anywhere else we could think of.  When dad was home we did more ice skating and even went skiing.  As a crazy working parent, this time with them was more precious then I could have imagined. Going back to school and work was sad for all of us!

That’s all for now…18.5 months until we are done with stupid cancer!

Observatory

Hanging with Emma