Delayed Intensification Is the Worst

We are currently four days into Delayed Intensification and already we have experienced a few very unsettling setbacks.

Day 1, Tuesday started off with a lumbar puncture with chemo, a dose of Vincristine and a dose of Doxorubicin. Easy enough, except it took 7 hours of waiting to be done with our scheduled appointment. By the time we got home we were both physically and emotionally drained.

She's been receiving medication four times daily at home. The very first morning, she promptly threw up all of her meds. Today I looked at her prescription and found that I have actually been erroneously under dosing her steroids by half! The nurse had told me to give her the same amount I gave her in the beginning of her treatment, but it turns out they actually doubled the dosage for this one week pulse. I seriously hope this doesn't have a negative effect on her treatment.

THEN!!!!!

Today her dad took her in for a dose of Peg Asparaginase. A drug that has to be given on day four. A drug that she has taken in the past. A drug that the moment it hit her IV today caused this to happen:

My husband sent me this picture in a text message starting with "First of all, she's okay...". Apparently her body built up antibodies the from the first dose of Peg so now she's developed an allergic response to it. The solution? Because it's a drug she absolutely must take, they will give her a modified version. Asparaginase without the Peg, is how it's been explained. The unfortunate bit is that instead of one dose, she'll need SIX! One every other day for the two weeks.

I feel terrible that my little girl went through that and even worse that my husband had to watch it happen. He said that one minute she was just sitting there coloring and then a split second later her face washed out, her arms and legs turned bright red and she was gagging for air. Within seconds the room was filled with a dozen people including three doctors. They gave her an epi pen, IV benadryl and made her sit under observation for the rest of the day.

We were lucky that her medical team was so quick to act, but I think it has shaken us a bit. I thought to myself throughout the afternoon that I had only briefly said goodbye to her when she left for a seemingly routine visit early this morning and all of the "What If's" began to flood my mind again.  Brooklyn is sailing through her treatment, but from time to time we are reminded of the reality of what has happened to our child and how scary this disease truly is.

The Incredibly Anticlimactic Start of Delayed Intensification

Well, today did not go at all like I thought it would, and really, has it ever? I don't even know why I act surprised anymore, it's all very par for the course.

As we were driving into Children's today, I received a phone call from the clinic. Brooklyn had been scheduled for a lumbar puncture with chemo. It was news to me, no one had even mentioned such a thing at the last appointment. For those who don't know, a lumbar puncture with chemo requires at least 8 hours of fasting followed by anesthesia. I, of course, had just fed Brooklyn a gigantic plate of bacon and eggs thinking that it would be the last thing she'd ever willingly eat for the next two months. Apparently, our oncologist had ordered the LP two weeks ago. An order that disappeared into a black hole the moment it was written. Then yesterday they came across the misplaced order and put her on the schedule last minute. Except that no one ever called to let us know that this had transpired.  Lots of finger pointing took place and finally the doctor threw up her hands and said fuck it, lets just try this again on Tuesday. So that is what is happening. Tuesday.

I did get to take a look at the next road map. Its a doozy, but still not nearly as craptastic as the first month was.

Six weeks. It looks like this-


-1 dose of Peg asparaginase and an LP with Chemo in Week 1

-Once weekly doses of Vincristine and Doxorubicin (I've been informed that this new drug is nicknamed "Red Devil", which, really is quite comforting)

-Steroids, 7 days on, 7 days off and 7 days on again. (I'm currently stocking up on Avocados and frozen pizzas)

-An antacid once daily to counteract the steroids

-An anti-fungle FOUR TIMES DAILY!

The doctor says we can expect her to be pretty sick and tired, and the rest of her hair could fall out (there isn't much), which, honestly, is the least of my worries at this point. Also, this Red Devil shit is supposed to turn her tears and urine red. Look out for Brooklyn's debut in the next big Korean Horror film.

 What is left of BK's scraggly head of hair.

This is the home stretch, we are so close to long term maintenance I can almost taste it. Hopefully, by July we will not only be celebrating our sweet girls third birthday, but also celebrating the close of this chapter in Brooklyn's fight.