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.

Half Assing it Through Phase III

Well, we are three weeks into Interim Maintenance and I wish I could say it's gone smoothly thus far, but then I would be lying.

Here's how things should have gone; Brooklyn would receive a dose of Methotrexate and a dose of Vincristine every ten days. The doctor would raise the dosage on each visit until Brooklyn began show side effects from the chemicals so that by the fifth dose she would be at the highest dose her body could tolerate.

What actually happened; Brooklyn received her first and very lowest dosage of Vincristine and Methotrexate and her immune system immediately collapsed.

What does that mean exactly? I can't really answer that questions because even her oncologist is perplexed. In the short term, it means we are officially delayed...er, half delayed, I guess, because they gave her the vincristine but not the methotrexate. They won't really be playing around with her dosage until her immune system is back up. It also means that we are in an isolation bubble again until I here otherwise. Bah!

It's ridiculously frustrating, tonight I spent the entire evening taking her temp every 10 minutes like a complete nutjob because I was certain she was on the verge of spiking a fever. It went from 99.9 to 100.3 to 100.4 then back down to 99.8. I checked before bed and it was all the way down to 98.9 so I guess she was just running warm? Anyway, being neutropenic is no bueno and it turns me into a neurotic mess. We are supposed to head back into clinic in 10 days and lord help me if her numbers aren't back up I might just have tantrum right then and there.

In the mean time, let me tell you about little miss Brooklyn. My daughter. I have never, ever seen Brooklyn behave as normal and happy as she has in the past three weeks. Not only has she been completely free from side effects (no vomiting, exhaustion, or temperament issues), but she's doing things that actual normal two years do. The kind of crap that would otherwise annoy the shit out of the parents of a healthy kid but absolutely thrills me.

Yesterday I caught her rooting through my purse and when I asked her what she was looking for, she stuffed her hand in her pockets, batted her lashes at me and said "chocolate."

When I ran into the living room the other day to a screaming baby and Brooklyn huddled in the corner "sweeping" with a broom I shouted "Brooklyn! Did you hit you sister in the head with that broom?!"  She turned to me, grinned and shouted back "No! In the nose!!!"

She's walking, talking trouble. Feisty as hell.  and I can' say I mind one little bit.

The Start of Interim Maintenance

I've been fretting since the beginning of this week.

Here's why.

Look familiar? Yeah.

I was tempted to write a blog post about these new bruises I recently discovered on Brooklyn's shins last Sunday, but held back. In the past this blog has served as an excellent source of foreshadowing and I thought it best not to create a potential guessing game of whether or not we were looking at the R-word. It's better if you don't allow your mind to take you there.

Anyway, you'll be happy to know that Brooklyn's blood work came back perfect. She remains in remission. Of course I was a gigantic ball of nerves as we waited for her oncologist so when she finally walked through door I practically shouted "IS HER BLOOD WORK OKAY?!". She assured me it was, and that the bruises likely have less to do with the fact that she has cancer and more to do with the fact that she's been trying to keep up with her five year old half brothers hard playing ways.

So today begins phase three, also known as Interim Maintenance. It's supposed to be easy, but I suspect it will be hard on poor Brooklyn as one if the chemo meds she'll be receiving is the same one that caused her jaw, knee and back pain during phase one. I'm walking out of this clinic armed with painkillers just in case she responds the same way this time around.

This is interim maintenance-
Two shots every ten days for 6 weeks
Antibiotics on the weekends

You are reading correctly. No more chemo home care for the next 8 weeks! I could jump up and high five the air right now. So here we are,  just plugging right along. As per usual, Brooklyn is kicking cancers ass like a champ in the iconic pink headphones, striped beanie and hello kitty tee-shirt that has become somewhat of a uniform these days.

We are Lucky

I had a moment, sometime shortly after the beginning of Brooklyn's treatment, when I was hauling ass between her oncology visits at Childrens, Indie's early term pediatric visits in the Valley and my OB postpartum appointments in Pasadena, where I thought-

"What if we didn't have this beautiful system of support made up of our friends and family? What if we didn't live in a community that offered us not one, but perhaps five different treatment facilities that offer pediatric oncology services? What if we were not a young couple working to make our baby healthy again, but instead a single person struggling to figure out how to both save their child and feed their family at the same time? What if we had shit insurance? What if we didn't have transportation, daycare, money for prescription copayment or hospital parking?'

There are thousands of "what ifs". They are all terrifying to think about, I promise, the most terrifying of which is- 

"What if I were doing this alone?"

Enter The Andre Sobel River of Life Foundation (Andreriveroflife.org). This group has earned mad respect within the juvenile illness world, and why not? Look that their mission statement!

When no other resources are available, social workers at our affiliated children’s hospitals send us urgent requests on behalf of single parent families in financial crisis. We respond immediately and without additional paperwork, because their social workers have already verified their need. The variety of requests range from essentials, such as food, transportation, utilities, and medications not covered by insurance to funds to protect a family from eviction or foreclosure.

We respond in 24 hours “when compassion can’t wait.”

Our River enhances and sustains lives in many other ways. We will advocate for airline tickets for a grandparent coming to help, or buy a wig for a self-conscious teenager returning to school after chemotherapy, or pay for ballet lessons for a neglected sibling. Instead of restriction, we give as freely as our River will allow. Contributions keep our River flowing. Please click below to make a gift.

I can not tell you how dark the days leading up to, and following Brooklyn's diagnosis were for us. Doing it alone would be completely unfathomable. Organizations like this exist for the soul purpose of helping single parent families. There are very few government resources available for parents of sick children who are forced to give up their jobs as a result. I would know.

(Now it's time for me to give you the shake down) Give your money to this Andres River of Life! I swear I have no horse in this race. Donations made to these people will not cure childhood cancer, nor will it pay my bills. It may, however, spare someone the heartache of having to choose between their sick child or a job. It might prevent a single parent from going into full on panic mode when their kid spikes a fever in the middle of the night and they have to rush into the ER. This organization can not run without donations. This organization helps people in dire straights.

OH LOOK, I FOUND THE DONATION PAGE FOR YOU! 

 https://app.etapestry.com/hosted/AndreRiverofLifeFoundation/OnlineDonation.html

You can make a donation in our sweet Brooklyn's name or you can make one for yourself, either way you'll feel awesome, and someone will be eternally grateful for you. Do it!

About Last Week...

Well, we made it out of the hospital in one piece, but it was no easy feat. It took the entire weekend to fully recover from Brooklyn's 18 hour ER stay followed by a night spent in the Hem/Onc ward. They finally released us on Thursday night after it was determined that Brooklyn was pretty severely dehydrated. Her stomach had stopped functioning entirely so she refused to eat or drink anything. This in turn caused her heart rate to be as elevated as it was. We still don't know what caused the fever, be it viral or bacterial, the antibiotic kicked it somehow. It's really bizarre, the cultures and blood tests came back negative for every common illness. We will likely never know what caused her temp to spike like that, but I'm glad it happened because I would have never known her heart was working overtime if we hadn't had to rush to the hospital.

So. Several bags of saline and many doses of laxative later, Brooklyn's heart rate went down. She was on the mend and headed home. I really have to stay on top of her about pushing fluids which has become a full time job these days.

I wish the drama ended there. It didn't. The next morning we returned to Children's at 5:30 am for Brooklyn's weekly lumbar puncture. When the nurse went to access Brooklyn's PICC line, she found that she was unable to flush it with saline. Three more nurses tried unsuccessfully and finally the hospitals "Central Line Guru" was called in. She did all sorts of voodoo on the damn thing and finally determined that the line was clotted and needed to be removed. She then called up our oncologist, Dr. Baskin and announced in her thickGerman accent "This child needs a chest port!" I guess Dr. Baskin approved because the Guru hung up without saying another word. Without hesitating, she walked over to Brooklyn and pulled out her PICC line. You could see the blood clot extending through the entire length of the 12 inch tube that once led directly to her heart. It was clear that the nurse the night before had failed to flush the line with Heparin, the one thing that keeps the PICC from clotting, when she unhooked Brooklyn's saline lock.

This frustrates me for multiple reasons. Mainly because I have spent the better part of two months OBSESSIVELY taking care of that stupid PICC line to make sure something exactly like this didn't happen and all it took was one overextended nurse to undo my weeks of fastidiousness . Additionally, it means that Brooklyn will now have her new central line for the entirety of her treatment as opposed to the 4-6 month timeline we were given in the beginning of all of this (the port sits under the skin in the chest and requires surgery to remove). On the bright side, I will no longer have to do PICC home care because the port is maintenance free. Plus she can bath and swim now, which I know makes her happy (bath time had become quite miserable since the PICC could not get wet).

Anyway, we are back on track following a couple of speed bumps. I have no intention of ever returning to the ER again. I hope that Brooklyn's treatment continues on an incident free path after this last week.

What's Going on with Brooklyn?

I really just need to learn to keep my mouth shut. Last week I sat in front of our oncologist and actually said "knock on wood, but we've just been sailing through treatment with very little incident." Foolish me. So it's only natural that we should land our asses smack dab in the middle of the ER at 9pm last night. I had mentioned before that Brooklyn's appetite was virtually non existent since she started consolidation. Well yesterday she began acting strangely. In the late morning she was sitting next to me on the couch and suddenly started shaking. When I went to pick her up she pushed away from me screaming "no mama!". I took her temp, it was normal. I gave her a bit of anti nausea medication hoping that she was just feeling a bit sick. She seemed to pull out of it.

After nap time she woke up screaming bloody murder. She told me her knee hurt, so I immediately took her temp. 99.5, which is her typical baseline, so totally normal. Then I gave her some Tylenol and called the doctor for the second time in two days. They told me she was probably constipated and to give her a laxative. I remained unconvinced, but followed their instructions anyway. I know this child better than anyone else, I know when something is wrong and I was 100% certain that this time there was something else going on here.

Fast forward to bed time. As I'm tucking the kid in for the night, just before I pour a second glass of wine for myself I think "I should probably take her temp just to be certain". And so I do. 101.2. The hospital guidelines say to call in anything over 101.3. I knew we were headed there. Five minutes later I take her temp again. 101.5. Fuuuuuuuuuuck. So I call the on call oncologist.  I am told to come to the ER immediately. So I pack up the kids, cork that bottle of wine and speed the whole family to the emergency room in the middle of the night. The place is pack. I mean, like no standing room packed. So I immediately put a mask on my little chemo kid and begin frantically searching for a safe corner. Apparently, cancer is serious to these people because I never even had time to sit down in the waiting room before they called Brooklyn's name. We were ushered into a room where the nurses did her vitals and blood draw. The doctor saw us almost the moment we settled in and announced they were setting her up for admittance just in case.

At this point Avi arrived from work to take the baby back home for the night. We were told that everything looked good and they would probably give her an antibiotic and send us home. Again, foolish thinking. An hour later they were hooking her up to a heart monitor, sending us for chest X-rays and an EKG. She came in with a heart rate of 200 and it had settled to 180. They would love for it to be down to 120. What could be causing this issue? They have no idea. Everything came back normal. The labs, the X-rays, the EKG. Her heart is just racing for some reason.

The most infuriating part of all of this is the fact that the hospital is completely full and there is not a bed to be found. Brooklyn and I have spent the past 15 hours camping out in the ER. We may be here for hours more. At least she has a private room. But it's not the most comfortable situation in the world. I'm beginning to wonder if I'll ever sleep again, I'm so exhausted. We still don't know what's going on with Brooklyn, and I'm not leaving until we find out.

If I've learned anything from this incident, it's that I should always follow my gut when it comes to my kids.