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.

The Many Faces of Brooklyn

I was looking at some photos of Brooklyn taken from over the past couple of months and I was actually kind of shocked. I guess seeing her everyday makes it difficult to see the changes that have taken place in her since her diagnosis. In retrospect I think she was very underweight in the beginning due to her undiagnosed condition and it had gone completely unnoticed by me. Now she is a solid 31 pounds which seems much more appropriate for her age and height (see last photo). It's quite amazing how fast those steroids take effect, though. Even after a couple of days on them she was already looking a little bigger.

 Just a quick photographic timeline:

                                       Brooklyn the day before she went into the hospital

                                                 Brooklyn two days after starting treatment

Brooklyn three weeks into treatment

Brooklyn on the last day of Induction

Brooklyn two weeks after Induction

This is Consolidation

Phase two. Treatment for ALL is so complex and long term that doctors typically deliver the road map to parents in bits and pieces. We really only knew what our first five weeks would look like, but after that was anyone's guess. Honestly, I don't think I would have been able to retain much more information beyond the induction phase, it was so rigorous. So, Brooklyn and I went into Children's on Friday where she had a routine lumbar puncture (watching my child get sedated and have a needle placed in her spine is now routine. I may need my empathy dial reset.) and we received her next treatment protocol. This is the consolidation phase:

1 pill per day
Antibiotics on the weekend
Once weekly lumbar punctures

It actually sounds pretty simple considering the shit storm we just came out of.  But of course, as with all things in life, if something sounds too good to be true it probably is. So naturally this daily pill is a colossal pain in the ass to deliver. First off it's a pill, a real effing pill the size of an aspirin. I thought it might be chewable, but it's not. So instead I have to crush that sucker up and place it in a syringe with  a little something. I've tried a number of suspensions, from apple juice to honey. So far grenadine seems to be the big winner. Additionally you can't give it with citrus or dairy for some unearthly reason. Lastly and most dauntingly, it must be given on an empty stomach. Which means at some point in the evening I need to cut her off from snacks.

Actually, that last bit might be okay. Because you see, Brooklyn has stopped eating almost entirely. The two weeks following her induction were fairly normal by two year old standards, but immediately following her first dose of 6MP, her eating came to a halt. I freaked out and began obsessively taking her temperature, praying it wasn't an infection. She seemed really happy, just reluctant to eat anything. I finally called her doctor and the charge nurse informed me that its pretty common for kids to go on hunger strikes following induction and to just try giving her a high calorie shake. Well, okay then.

So our next four weeks will hopefully stay relatively uneventful. It sounds like we don't even need to see the oncologist until the next phase, which makes me a little uneasy. I find comfort in the weekly reassurance I get from our doctor that things are going smoothly. Anyway, the next phase is interim maintenance aka the calm before the storm. We'll see what that brings.